Sunday, 29 December 2013

Update: Activity Aftermath (Christmas)

I'd like to start by saying that I hope all those that celebrate Christmas had a great day; I hope readers with chronic illnesses managed to have a nice time and their illness didn't intrude on the day too much. I hope at least one thing made each of you smile.

In comparison to how I had been, Christmas Eve and Christmas Day were an improvement for me health-wise, which was great. I still couldn't do a lot, but I went to a spa on Christmas Eve for a flotation treatment and gentle massage which was lovely and to a Carol service at Church in the evening, and I got up at 8am and stayed up until 10pm on Christmas Day (with plenty of rests (..well actually pretty much continuous resting..) on the sofa in-between), so although both days were quiet and spent mostly horizontal, they were relatively good for me at the moment. Pain levels weren't too intrusive, although my headache was quite nasty by the time I eventually relented and went to bed on Christmas Day. Big events aren't easy while feeling unwell but the consequences can be even more difficult to endure.

The day after a big day is often a difficult day for chronic illness sufferers, particularly ME/CFS sufferers, as post-exertional malaise is a hallmark of the illness (feeling rough as a delayed result of doing more than their illness permits). Post-exertional malaise is believed to be as a result of failure of mitochondria (working parts of cells that generate the 'energy' that the body requires to work). If you use more energy than your body is able to produce, you have limited energy for a few days while your body catches up and replenishes the stocks. Oversimplification obviously.. It's sort of like an energy hangover.

Days like Christmas Day often tempt people with chronic illnesses to push their boundaries. They try to ignore aspects of their illness and are often a bit relaxed about sticking to their limits. Sometimes we later regret it, other times it's worth it.

I spent the 26th with chronic illness sufferers very much in my thoughts, wondering how everyone was feeling and coping, and hoping no-one was regretting their exertions the day before. I didn't feel great- I was exhausted and dizzy, and certainly wouldn't have been well enough to leave the house, but could have been worse. I was quite relieved really, because it wasn't anywhere near unbearable. But payback is often delayed by up to 72 hours, and there can be a prolonged flare of symptoms if you've really pushed things, so I wasn't out of the woods just yet.. Compared to how I was a few months ago, I'd barely done anything over Christmas, but knowing my current baseline is so low that even sitting up too long increases symptoms, I knew a further flare was a possibility.

Sure enough, the next few days were equally bad, if not worse. I was nagged by several family members to get up and dressed about midday on the 27th because the plan was to go to the pub for lunch. They assumed I was well enough. I was annoyed because it would have been so much easier for me if they had given me time to wait for my pain meds to kick in fully before getting up. Instead I ended up slumped in the bottom of the shower crying in pain trying to wash my hair. It was agony. It would have been a better idea to actually say I wasn't feeling well and work out a more suitable plan/timescale, but I just got inwardly cross and ended up in a bad mood. I then ended up agreeing to go into town (obviously on my scooter, I can barely walk at all these days) because I thought it might raise my spirits and also because they were wanting me with them to make parking easier (I come with a blue badge, it makes me a significantly more desirable outing companion this time of year); I did get them 3 hours free parking, but I didn't enjoy it. It was crowded, shops were even less accessible than normal because shops seemed to have tried to put out as much stock as possible and people made it difficult to get around. There weren't sizes on the tops of hangers and my arms were too tired to move each individual item to see what size it was, so it was pointless really. It just irritated me further. Plus, I wouldn't be pleased with how I look in anything at the moment because I'm severely underweight. I'm actually the lightest I've ever been (since I grew up, obviously), so that's pretty scary..

The 28th was awful. I was in bed until gone 7pm, lying staring round my bedroom and listening to a bit of music some of the time, drifting in and out of deep rest/fitful sleep. I then lay on the sofa in a lot of pain watching some TV until half 11, and I wish I'd just stayed in bed, where I was a bit more comfortable, because then- perhaps- I wouldn't be in so much pain now. I don't think I'll be getting to sleep for a while.

The plan is to go sales shopping (in a bigger city) tomorrow if I'm well enough. But I don't think it's likely. Plus, I desperately want to be as well as possible on the 31st because I'm going to London to see a show, so I don't want to push things too much with only 1 day afterwards to rest.

I'm also starting to get concerned about starting back at Uni. It's only 8 days until my new term starts. I'm simply not well enough at the moment. If I'm not well enough to start back as planned I don't know what I'd do, I don't know who I'd need to contact, I don't know what my options would be. I also need to be at my Uni flat to get to all my hospital appointments, which complicates things further. I just hope things pick up over the next week. I think I might be being unrealistic though to be honest, given how bad my payback is from such basic things at the moment. 

I always find it helpful to focus on the memories of the day you enjoyed to help you get through the difficult days that follow. Obviously ideally these difficult days wouldn't exist, and pacing is great to try to prevent/lessen these, but not always practical, and limits can be lower than anticipated, so I think it's important to accept some degree of payback as part of our current reality. I actually think it's perfectly acceptable to knowingly cause payback by exceeding my own limits to enable me to have a life sometimes, and I doubt I'm the only one...

Payback is just part of my life these days- I try to expect it, accept it, learn from it, and move on. Easier said than done sometimes though..



Sunday, 22 December 2013

"How did it ever come to this?"

The title is a line from a Take That song I was listening to yesterday. It rather resonates with me at the moment.

I had an absolutely horrific day yesterday. I was in bed in agony all morning and feeling too ill to sit up, eventually decided to go downstairs to see my grandparents who were visiting at 4:30pm because I was lonely and they'd already been here a while and I felt like I ought to say hello to everyone, but then I curled up on a beanbag and rested with my eyes closed anyway, so I still wasn't really 'there'. By 8:50pm I was in tears because I felt so ill and was in so much pain so retreated back to bed.

Not exactly a successful or enjoyable day!

In Take That's words: How did it come to this?
How did I end up severely affected?

I've always read about cases of severe ME in absolute horror. Now that's pretty much me. I'm the girl lying in bed most of the time, lying on the sofa most of the rest of the time, rarely able to get up before midday, only sometimes able to leave the house (and even then it's on a mobility scooter), in unmanageable amounts of pain, on a ridiculous amount of medication. Some elements of this have only been true for me for a relatively short time so far, and *hopefully* I will be lucky enough to get back to my previous level of functioning quite quickly. It's truly awful to think that this is some people's reality for literally decades.

I really am struggling/did struggle to cope with the severity of illness I experienced yesterday even just for a day, although that's partly because I've had weeks now of being really, really unwell and it wears you down. But just the actual severity of the pain and the constant ill feeling are absolutely overwhelming.

This relapse started in earnest just over 5 weeks ago, although I'd already been really struggling to cope for a week before that. Since then I've only had a week and a half of relative respite, during which I even managed to attend Uni part-time. I was having to use my mobility scooter even to get relatively small distances inside due to mobility difficulties, was needing a lot of rest and was having difficulty managing my pain at times but was feeling comparatively ok, although admittedly rough and going downhill. But other than then it's been horrendous.

I never dreamt I'd end up in this state, even as things slowly (or sometimes quickly) progressed. I assumed I would improve before my next relapse, would have got some weight on and my mobility would have improved to some extent. Then it would have been less drastic and less terrifying. I would've had somewhere familiar to drop down to.

It wasn't to be. This is something else.

I just never thought it would be like this. In the back of my mind I knew it was a possibility because I've obviously read about people with severe ME in the state I'm in now, and- worryingly- worse. There's no real treatment for ME, doctors can't really give us hope, and often struggle to even make us comfortable. They're more reticent to pump us full of symptom-relieving drugs than they would be with, for example, a cancer patient, because there's less understanding about what's going on and ME/CFS patients are also quite sensitive to a lot of drugs, so there has to be a degree of caution. I am lucky to have a number of medications that do help, but only to a degree, and I have doctors who are willing to try things with me and play around with dosages. None of my doctors can prevent me suffering when things get this bad though unfortunately (particularly as I am away from my regular doctors at the moment and wouldn't be able to leave the house to access treatment most days at the moment anyway..).

Fingers crossed I get to sleep soon and today is a much, much better day!! My heart goes out to those that have been severely and very severely affected by ME long-term; respect and gentle hugs are being sent in your direction!

Friday, 20 December 2013

My birthday, reflection & ongoing relapse

I turned 22 very recently; I had a nice birthday, but my illness did interfere with the day considerably. I was feeling unwell and exhausted, spent a lot of the day either in bed or resting on the sofa, and didn't feel well enough to go out for a meal to celebrate, but I was well enough to open and appreciate all my cards and presents, wear some new clothes, read some lovely messages I received from friends and family, watch some TV and Elf (for the second time in 2 weeks- it's mine and my brother's favourite Christmas film), blow my candles out and eat cake and other nice food. So I still had a nice day!

Now it's the early hours of the morning and I can't sleep- perfect time for a bit of reflection..

I have now turned 22. Another year of my life has been blighted by CFS. I have been ill for 4.25 of my 22 years, that's 19% of my life.. 17% of my life with an actual CFS diagnosis.. Ouch.

I struggled last year with the thought that I had been ill for my 18th (although undiagnosed at the time) and was still ill for my 21st- 2 big landmark birthdays.. This year it's not hurting because I feel like it's a particularly special birthday, it's hurting because my condition has continued to deteriorate, and it was my fifth birthday ill. I'm in a much worse state this year than I was last year. I can't help wondering what my health will be like a year from now. Things may be better, things could be worse. Not knowing and not being in control of this is difficult.

I have finally dealt with some of the practicalities of chronic illness this year, now that I'm finally coming out of denial and realising I'm in this for the long-haul. I have certainly not accepted that I will be ill forever, but I'm now realising that my road to (probably relative) recovery will be a long one- I'm not going to wake up in a matter of days or weeks, or even months, completely well. This understanding has allowed me to move forward with sorting out a few necessities- I bought a mobility scooter, I got a blue badge, I've applied for PIP and I have a significant level of support at university- not that I had much choice, denial wasn't an option, my legs were giving up. These things have made life more manageable, but unfortunately none have stopped the progression of my condition. I had a couple of months reduction in pain and some other symptoms when I first got my mobility scooter which I was incredibly thankful for, but as things got worse, everything has unfortunately got just as bad (if not worse..). I'm obviously still grateful for my scooter though, because I would now be housebound without it.

I still find it all quite difficult to get my head around. The future is so uncertain for me at the moment. Right now I am incapable of living independently, and that realisation is not an easy one. I had to leave university early this term because I was burning myself out, my body was screaming at me in every way it could think of and my doctor eventually convinced me going home was the sensible course of action by saying he thought the likelihood of me collapsing again if I stayed while this ill was high, and I would be at risk of injuring myself which would put me out of action for much longer. He also said that I would stand a much greater chance of being well enough to tackle the rest of the year if I had additional time off. As it happened it was definitely the right decision, because I took another turn for the worse within a few days of coming home, and my level of health remains very poor.

I fully intend to return to university in January, partly to give me the opportunity to talk through my options with my healthcare team (and department). I am hoping I will be well enough to cope with the demands of my university course in January with no further adjustments, but I am also very aware that it's possible I won't be, given that I'm now basically halfway through my extended holiday and am so far feeling no better. I'm also aware that I will be returning having missed a lot of the previous term and am therefore likely to face difficult questions. But I have people who I know will be willing to help me fight my corner, which is incredibly reassuring. I hope to be able to stay part-time at least, because that would be a lot easier psychologically than complete time out, and would keep me in practice, in touch with friends and my medical team, and probably get me through my course quicker than if I have to have complete time out, but it just depends what I'm capable of.

So what's the situation at the moment? Well.. I'm having to be careful to not do too much, and that involves limiting basic things like sitting up some days. Things are quite physically difficult at the moment- getting properly up and dressed is just not possible/bearable some days but most days it's just a challenging, tiring, lengthy process right now. I spend most of the time that I'm out of bed on the sofa and thankfully my mum has been around to fetch anything out of reach, get me lunch, dinner, snacks and drinks. My independence has slipped away a bit at the moment, but I'm seriously hoping I'll get it back (soon please!!). I've managed to get out a few times thanks to being at home with my parents to drive me around and my mobility scooter Poppy who is getting me around brilliantly still. I get really tired when I manage to go out at the moment, and get payback so have to rest afterwards, but I can accept that. Overall I feel like I've taken a huge step backwards though to be honest.

Relapses really are vile things. They steal away abilities. Losing ability is so quick, and getting function back is practically impossible while I'm this ill, so it's really hard. I'm lucky I seem to always manage sitting up again once I've got over the acute phase of a relapse, because having to be constantly lying down is really difficult to live with. When you know you are quite likely to suddenly need to 'get flat' it's difficult to do anything really. I'm already past that phase with this relapse thankfully, although standing up is still a bit dodgy at times and I wouldn't be able to be sat up all day at the moment- I'd be shattered and ill the next day! My system just can't cope with any additional challenges right now.

I feel very 'disabled' at the moment, which is really difficult. I am really hoping I will recover further from this relapse though. It was a bit of a 'double-dip' relapse, which I've only had 1 of before, and that one took a while to get over too, so I'm hoping there's still reason for hope that I will see some further improvement. Although it seems likely I won't get back to my pre-relapse level, which was already difficult.. But only time will tell.

I still don't even know what the cause of this relapse was, and I know that's irrelevant really but not knowing is frustrating, and you can't help wondering whether there's something else going on- an underlying infection or a deficiency or something- I know deep down that I'm just wishing there was something treatable going on though.

I just want to know whether things will get better. If this illness is going to turn out to be truly progressive (very unlikely, but possible), I would rather know now, but I very much doubt anyone is going to be able to tell me. My illness has taken an unusual course so far, ME/CFS getting constantly worse year-on-year for over 4 years is not the norm, so I think it's fair to say no-one is going to be willing to make any predictions about where things will go from here. It also makes me question whether my diagnosis is the right one or whether it's something else and what my prognosis would be if it were found to be something else. At least with a diagnosis of CFS there is still hope for improvement in the future, so I do hope it's right and I do experience improvement, although obviously preferably they would find out it is actually something curable or even just properly treatable, in which case I would be absolutely ecstatic.

All I want is to get significantly better, to enable me to be independent and get on with my life.. I have a huge amount to be grateful for in my life, but the big piece missing is my health. I just hope my dream of significantly improved health does one day (ideally soon!) come true..

Thursday, 12 December 2013

My dog and a brief update

I've been having a tough time since my recent relapse; I returned to Uni part-time for just over a week, but then saw my GP and he signed me off 'unfit for work' for a month to give me time to rest and recuperate, because I wasn't going to stand a chance of bouncing back while pushing my limits, and I was in a bad way. I'm therefore now at home being looked after by my parents. Things haven't picked up in the way I'd have liked, but it's certainly nice to be with my family and my home comforts and, of course, my dog.

He's what keeps me going when life just doesn't seem fair and doesn't make sense; he loves me and I love him. I chose him as a puppy when I moved areas at the age of 16, and he brightened up my life in every way. I had a long summer between GCSEs and Alevels to get him trained and bond with him, and we certainly did both. I started off with so many rules he must abide by, and most of those have now disappeared. I love it when he comes in to see me in the morning and his joy to see me is heartwarming. However much pain I'm in, it makes me smile.

Pain. See that's something that wasn't an issue when he first came into my life..

When I first got my boy I was totally healthy (apart from allergies and mild asthma) and he was a healthy 8 week old puppy. I trained him to sit and lie and walked him on a lead round the garden which he thought was a great game. Once he'd had his injections my family and I took him out for his first walk. He was excited by everything, wasn't phased by anything, and certainly didn't stop. He pulled and I let him- it showed a zest for life that really appealed to me.

We practiced calling him between us in the fields and soon he was walking mostly off his lead. He and I used to run in the fields and have races down the paths (he always won!) and generally just enjoy being out together.

Soon I had to return to school and we spent more time in the house and garden together, with my parents taking on a majority of the walking duties, although I still often went out with him at evenings (depending on homework/clubs) and weekends. I taught him tricks and he spent time with my other pets and I. We played a lot, I chased him around the garden and threw balls for him.

Then everything changed. I got ill. My ability to walk gradually decreased. To start with I'd just get tired so I was less inclined to run around with him or walk him. Then I got slower, and he had to learn that pulling (zest for life..) wouldn't make me go any faster. Then there was a period where we rarely left the house together, and when I was home I was mostly asleep. Then I went off to Uni and walking eventually became physically challenging, so then there were occasional wheelchair rides which he quite enjoyed sitting on my lap for (not exactly exercise for him, but we were both warm snuggled up together), and then I got my scooter.

It is great, we can go out together again just me and him. We can be alone- just us- like the old days. He likes rides on my knee. He comes to pick me up from the railway station when I come home from Uni and likes riding on my knee on my scooter and going in the lift and out to the car while trying to tongue-attack me. He wiggles from side to side in excitement, which isn't great for my pain levels, but I honestly couldn't care less.

The thing is, it's not the same. The thing I miss probably more than anything in the whole world is running in the fields with him. It was special. Running alongside him with his ears flapping. And I'm not sure I'll ever get to experience that again. I hope I will, but I'm so far from being able to do that it's unreal. My walking ability had got pretty dire before this relapse, and I'm feeling more wobbly and weaker now, which may be temporary, but it might not. Getting from practically completely immobile to running in fields again feels like a practically impossible challenge, and there's a chance it may never happen, and a definite possibility it won't happen in his lifetime. That breaks my heart, it really does.

He has given me absolutely unfaltering adoration (well possibly apart from when I'm being annoying and waking him up for a cuddle etc), and yet I can't be sure he even remembers those special early days. I've been ill for 4 of the 5 years of his life.

I'm glad I've had him while I've been ill, because he has been amazing. He can cheer me up when nothing else really can. He loves me in such a simple, unconditional way. But in another way, it seems such a shame that such a massive proportion of his life is going to be spent with me not well enough to properly play with him, not able to walk him over fields or run with him. I just hope we get to spend some time together with me relatively well again before he gets old.

I'm so grateful to have him in my life. Pets offer fantastic companionship, particularly for those with illnesses/disability, but they also require a lot of care and attention. I'm incredibly grateful that my parents look after my (well.. our) dog so well. He's a part of the family. He's a 'mummy's boy' really- he does love my mum more than me, but that's ok- she does practically everything for him these days, and she does give very good cuddles (my dog certainly doesn't approve of how bony I am these days- not comfy at all! Lol).

Things feel very challenging at the moment- I don't know if/when/how much my health is likely to improve from this low-point and that's terrifying. This relapse has been very physically challenging; I've had a truly horrific day today, one of the worst of this relapse so far (and that's saying something!!), but being at home with my dog has been brilliant for my mental health- his joy is infectious and snuggling up together helps all my worries melt away and distracts me from my pain and discomfort, and for that I am so incredibly grateful. I won't pretend I'm not struggling at the moment, but those moments when I can forget about it all are therefore very precious.



Tuesday, 26 November 2013

Benefit claimant =/= scrounger

There seems to be a constant campaign to showcase the tiny minority of cases of disability benefit fraud to give the general public the impression that most of the money for disability benefits is spent on undeserving scroungers.

The able bodied often forget the importance of having a safety net to look after the sick and disabled during their time of need and some instead see the money as a drain on resources, funding golfing membership or exotic holidays for wealthy people fiddling the system.

The reality is so different from what the government and media seem all too keen to portray.

Disability benefits such as DLA, or it's replacement PIP, are to enable disabled people to live with an adequate quality of life. They aim to pay for the difference in cost of living with a disability. They often enable people to *stay in work*. Yes, it's not true that disabled people just sit at home collecting hand-outs. I'd be surprised if there are many people out there with any sort of disability/health condition, forced to be at home through ill health who wouldn't work if they could, because working helps maintain a sense of identity and you feel more 'useful'; both of which can be more challenging as an ill/disabled person. Obviously, there are some disabled people able to work but unable to get a job- often because ill people aren't employers' first choice, for fairly obvious reasons, but people with disabilities can be a real asset.

Disability benefits have very low levels of fraud, it just makes a good story, it would seem, when someone has managed to fraudulently claim. The process is long and you are reviewed either by an independent healthcare professional (along with evidence from your healthcare team) or rarely on evidence from your own healthcare team alone if this clearly demonstrates the level of benefit to which you are entitled.

People don't claim disability benefits for fun, it's an arduous (and potentially upsetting) process. They claim them because they are entitled to them and they help to maintain or improve their quality of life. Disability benefits don't cure the person's disability or make them feel better, but they can relieve the financial pressure that can be an added stress of living with ill health/disability.

I think sometimes healthy, able-bodied people forget that this is relevant to each and every one of them. Just because you've got this far without a disability doesn't mean you won't ever be disabled. When I was healthy at the age of 17 I would never have dreamt I would be using a mobility scooter every time I leave the house at the age of 21, it would have seemed completely impossible, but these things happen. No-one is immune to disability. I think it's important that people remember that this could be directly relevant to them or a family member or a friend in years to come; this is an important system to look after the most vulnerable members of society.

Part of the reason DLA is being replaced by PIP is to reduce the number of people receiving the benefit. Do I agree that scarce resources need to be focused on those most in need? Of course I do. But do I see a problem with suggesting in any way that the change is to reduce fraudulent claims? Yes, because the amount the budget is being cut by (20%) greatly exceeds figures showing levels of fraudulent claims (less than 0.5%). If they're taking benefits away only from people with very 'mild' disabilities who could cope without the benefit, then I wouldn't *necessarily* have a problem with that on principle, but I very much doubt that is the case. Withdrawing benefits from people who are reliant on them could be catastrophic. There have been multiple cases of people committing suicide after having disability benefits wrongly withdrawn- this isn't a trivial matter.

Some people will probably have been on higher rate mobility DLA for years, and will be using the motability scheme, which allows them to be independent and have freedom through provision of a car or electric wheelchair/scooter in return for their allowance; some of these people may be refused enhanced rate mobility PIP and could end up without the transport on which they rely, particularly if they require adaptations. Hopefully this won't affect too many people and motability are thankfully offering support in the transition period, but that's not going to be much of a comfort to those who are affected, who may well have to go through lengthy, stressful appeals processes that may worsen their condition if they have a chronic illness.

I'm looking into disability benefits for the first time, and I was actually reticent to mention this on my blog, because I don't want to be judged for making an application. But then I realised that the idea that I would be judged for attempting to claim benefits to which I am entitled is ludicrous. That doesn't mean it won't happen, but I just think it's important to speak out about the real role of these benefits. They're not to line the pockets of lazy people, they're to give disabled people a helping hand to help them to remain part of society and to live without being solely reliant on the good-will of others which can be degrading and unreliable. I have initiated a claim for PIP because my ability to walk is now severely limited, and there will be days I cannot use my mobility scooter over winter because of safety, so I need the benefit to allow me to remain mobile during winter, so that I don't end up housebound and missing parts of my university course. It's to help me to maintain my independence. Filling in the 40 page PIP form was difficult, it's not something I ever imagined I would be doing at 21 years of age, but I am now relaxing in the knowledge that I have been completely honest about my abilities/difficulties on the form, so it's just a case of waiting to hear back, probably with an assessment appointment.

I used to see DLA as though the government was paying you compensation for being disabled, which I found frankly offensive, but then over time it became clear to me that not having your legs as a form of transport actually causes significant expense. I had to buy a mobility scooter (getting appropriate mobility equipment on the NHS would have been an incredibly lengthy and almost certainly impossible process), which was far from cheap, and I feel I have no choice but to regularly use taxis, because I feel too vulnerable to be out alone on my scooter if I don't know exactly where I'm going. Taxis are also sometimes necessary to save energy on bad days, because a lot of disabled people are also ill. I'm also starting to struggle to look after myself so you start noticing possible future expenses and thinking about things that might help. Many ill and/or disabled people require help with multiple tasks; there can be a need for help with eating or washing or dressing or communication or finances etc, or a combination of multiple things. People may need to buy aids to help them be independent with these things, or may need to buy things to avoid the need for certain tasks, or may have to pay to receive help from others. All these things cost money. People with illnesses are often not able to take on additional work to pay for the additional expenses. Some are reliant entirely on benefits and rely on these disability benefits to pay for these additional expenses. Just because someone is disabled, it doesn't mean they deserve a lesser quality of life. Give them enough money to be able to let them make their own decisions about how they live life and work around the barriers to independent living that their disability creates- they deserve autonomy.

It concerns me that there's such encouragement to report suspected 'benefits cheats' because it puts claimants at risk of being wrongly accused, which must be incredibly stressful. Clearly if someone is obviously misusing the system it's a good thing to report them and get the benefits withdrawn, ensuring the money is available to go to the right people, but people can be quick to jump to the wrong conclusions. A lot of illnesses and disabilities are invisible and variable. Someone very unwell can look completely well, particularly on a good day when they are out the house (which they probably are if you're seeing them). You might see them walking around doing things looking completely healthy, but you can't see their pain and other symptoms, you don't know whether they later have payback symptoms and collapse exhausted afterwards and you don't know whether they had to rest in advance to be that well. A healthy able-bodied person's understanding of the system on which people are judged is also probably limited, so just because somebody is able to do specific things, it doesn't mean they're able to physically do or cope with doing (mental illness causes disability too) the tasks on which they are judged. I'm not saying don't report people abusing the system, I'm just encouraging people reading this to think twice about the 'evidence' they have that someone is lying before accusing them.

The current welfare reforms are not in the interests of disabled people, and ill and disabled people are frankly bearing more than their fair share of budget cuts. Many of them are not well enough to voice their concerns but people's health could be at risk. It will put more stress on charities and there will be more demand for other government-funded resources. That's why I have signed the WOW Petition (War On Welfare) at wowpetition.com and would encourage all my readers to do so too (if you're in the UK and reading before 12/12/13!). It will take literally 2 minutes of your time to fill in the form and click on the link in an email sent to you, but would mean so much to a huge community of vulnerable people. We need the government to realise that the country cares about the sick and disabled, which will hopefully make them rethink some of their current policies.

Thank you for reading, and I sincerely hope if you're currently well enough that all this seems slightly irrelevant to you that it stays that way, and I hope that if you're directly affected things work out ok for you :)

Update: relapse and thank yous!

I'm still in a relapse at the moment, but am finally seeing some progress. I'm feeling less suffocatingly exhausted and am not losing my hearing or sight (a sign I'm close to passing out) when I sit up now, so they're positive signs. I've lost all the weight I had managed to put on, I'm very weak, a bit wobbly on my feet, my sleep is still a bit all over the place, I'm still very tired and my pain levels aren't great, but at least things are moving in the right direction at last. I'm intending to be back at Uni by the end of this week although it will be a week or two before I'm back attending everything.

I haven't done anything to really update anyone on.. I am coping ok emotionally, am at home being looked after by my parents at the moment and am following my doctors advice: manage pain, rest and wait. It's really boring, but I'm so grateful for the messages I've received over the last couple of weeks, they've really helped me through, so thank you so, so much!

The other thing I wanted to say was that whilst relapsing I've passed the milestone of 10,000 pageviews on my blog- amazing! Thank you so much to everyone who reads this, it helps me feel like people care, helps me feel more understood and that I'm helping others feel understood and helps me feel less alone in all this, so thank you. It mostly helps me work through my own feelings about everything and acts as a log of how my illness and symptoms have changed over time, but the fact others read it and get something from it is a bonus :)

The last thing is that my blog now has a shiny new Facebook page that I'm posting new blog posts to as they're posted etc. so head over to Facebook.com/jesscfs if you'd like to keep up with the blog or get in touch, it'd be great to hear from you.

Thanks again!

Thursday, 21 November 2013

Update: relapse and psych stuff

I know some people are wondering what is going on so this is just an update to let people know that I'm still alive!

I've been relapsing pretty much ever since my previous update. I spent the weekend in bed and then attempted uni on Monday, which resulted in me fainting mid-lecture and coming round lying on the floor in a packed lecture theatre with my lecturer and several friends around me, with no recollection of how I'd ended up on the floor. All very embarrassing. I went and got a sugary drink, convinced myself I was ok and attended a second lecture. Thankfully I remained conscious but felt increasingly unwell so spoke to the staff I was meant to have later in the day and retreated home to bed.

It soon became clear that the weekend in bed hadn't revived me to the extent I had hoped and I was in fact in a bad way. I realised this isn't a flare, it's a full-blown relapse. Exactly what I've been dreading while my functioning has been so low and had been hoping to avoid until my weight had increased significantly.

It's been a nightmare. My weight always drops during relapses because I'm asleep or practically asleep a lot of the time (you can't eat while you're sleeping, a revelation I know), I also simply don't have the energy or the incentive to get out of bed, go to the kitchen, decide on something to eat and eat it; it just doesn't happen. Relapses are all about riding it out. I eat what is within arms reach, which means picking on biscuits and mints as and when I am awake and can face both food and physically eating. I am eating most of a proper meal every evening thanks to my awesome flatmates, who I frankly wouldn't survive without at the moment, but other than that my nutritional intake is limited at the moment, as is always the case during a relapse.

The difference this time is that I'm under psychology for assessment for an eating disorder; try explaining the above to someone who is obviously looking for psychological reasons stopping you from wanting to eat. It all gets difficult and complicated. If I'd had a few more months between finding a successful medication and this relapse things would be very different. I would have shown that with reduced nausea I can eat well and put on weight, and that there's nothing psychological stopping me. And then it would have been easier to later explain that CFS relapses severely impact on my ability to eat well, and it all would have been nice and separate and easy to decipher. As it is, she's worried about my weight and even going as far as saying that my BMI is not far off being fatal, which is frankly a load of rubbish, but it does make you think; at the same time it's also unhelpful because I don't feel able to do anything about it until this relapse passes. Although, there's a possibility this relapse could be maintained by my malnutrition, which could result in a proper mess.. But let's not go there..

I'm also working with my psychologist on coping with my condition, because, as her report states, I am 'feeling fed up and at the end of my tether with regard to coping with my CFS condition'. I've just had enough, I want it to leave me alone and let me get on with my life. We haven't really made any progress so far though, but I have only had 2 sessions, and they've been more for her to get to know my situation and for me to feel comfortable talking to her. In those regards, I suppose the sessions have gone fine. And I think the fact I was in a seriously bad way when I went to my appointment the other day probably hindered any real progress to some extent (when I'm that ill I'm pretty numb to everything, because I'm too tired to care, I just wanted to get back to bed in all honesty).

My psychologist seems aware that I don't have an eating disorder in terms of anorexia or bulimia, but she thinks I could possibly be stuck in a cycle of nausea causing lack of eating/malnutrition causing nausea etc. Obviously physical causes for my nausea haven't been ruled out yet (I have FINALLY got an appointment through- am seeing an upper GI surgeon in January- which feels like forever away), but if nothing is found we are going to explore other possible causes for my nausea. I'm trying to keep an open mind, because at the end of the day I will try anything that helps, although I don't really see my nausea as a huge issue at the moment to be honest. It was, a few weeks back, but now that I'm on the right meds, it's the relapse causing more of an issue.

I've spent so much time in bed over the last few days, and most of the time I've been sleeping or deep resting, so it's been incredibly dull. I've had a few appointments, but other than that I've just been asleep or lying with my eyes closed- not exactly thrilling! I'm hoping to return to uni for a while tomorrow, but if I take a turn for the worse I will need to be able to leave, and then hopefully I'll be well enough to return to uni properly, or to some extent at least, next week.

I don't know whether this is realistic, or wise. I've been in a cycle of pushing, causing relapses and losing function for a long time now, and there's very little function left to lose. My body is screaming at me in every possible way. Should I return to uni? I know I want to, but that's a separate matter entirely. Something has to change, I know that, I have to do something to try to prevent these horrific relapses, but at the same time I'm not really ready for change. Other options just don't appeal. I've fought so hard to get this far, walking away would be inexplicably difficult. This is my life, my future, and it all just seems to be so close to disappearing in front of my eyes, and there's absolutely nothing I can do to stop it. The harder I cling and fight to stay here, the more ill I get. It's really tricky. In a way I feel like I have no idea what to do to control my condition, but at the same time I know if I walked away from uni there's a good chance my level of health would improve- not miraculously, but I'd certainly have fewer activity-induced relapses, and the continuous deterioration might actually stop. That decision is a seriously hard one though, uni is my way of getting the career I want, rather than just a job. And I don't know that there's anything else I want to do, or that I feel able to do with my CFS. I'm terrified I could end up incapable of work and living off disability benefits, which would be my idea of hell- no hope, no future. That's not a life I like the sound of in the slightest.

I'm still young, I've got years ahead of me (hopefully), but it's difficult to decide what I'm best to do with my time now.. Is it best for me to take some time to look after myself properly, or am I best to just keep going towards what I desperately want, even if there could be implications..? It's difficult to know.

My head says leave to sort my body out and improve my health, my heart says stay to sort my life out. I want to get better, but I don't want to leave.. When will this illness stop beating up and let me finally get back on my feet (literally..)?

For now, I'm not rushing into anything. I will reintegrate into uni, taking things slowly at first, will see how things feel and how I feel about things, and then I'll see where things stand..

Friday, 15 November 2013

Update 15/11/13: in a flare and feeling lost

I'm feeling really rough. My pain levels are nasty- every time I move I wish I hadn't. I'm tired beyond belief, and also tired of the constant administrative tasks necessitated by my condition. Why is being ill so complicated and time-consuming? Why do systems not seem to work?! Why does no-one seem to tell you what's happening when it really matters?

My arms hurt, my legs hurt, my back hurts, my ribs hurt.. I don't know how I'm meant to cope with pain this bad for this long.

Every day so far this week I have considered not going to Uni because I have felt so rough. Every day so far I have then gone (apart from today, because thankfully I had a much-needed day off..). Pushing myself like that is risky in terms of a relapse, and relapsing now would be a nightmare. My current level of functioning is bad- a reduction would be devastating.

I don't know how to go about managing my pain. I don't know whether I'm developing tolerance to the tramadol or whether the pain is just getting even worse. I was going dizzy from the pain yesterday morning. That's always a sign things have got pretty bad for me.

I just don't know what to do. I'm struggling to get a GP appointment with the GP who actually knows what's going on with me, and it would be totally pointless me going to someone who doesn't know and understand my history and asking them to help, because they would simply be overwhelmed and would want me out the room ASAP, and, although I know they shouldn't, I do actually understand why they would feel that way. I think it would be unfair for me to inflict myself on an unsuspecting doctor right now, and there's also paperwork that needs sorting about an ophthalmology referral I think I no longer need (although the double vision did return for a short while yesterday when I was exhausted..), so I need to discuss this with the GP who knows what the problem was.

I have no idea what's going on with the referral for my nausea, I just get told that it's probably going through fine. But the department hasn't contacted me yet, and I just want to know when I'm going to be seen, to know how long I need to cope as things are.

The only appointment I actually have booked over the next few days is with a psychologist (an eating disorder assessment because I'm skinny). I just hope the focus isn't entirely on them trying to work out whether I have an eating disorder- as long as they listen and understand that my nausea (and sometimes also pain/fatigue) is the problem, it should be fine. If they could help me access appropriate support for the problems I'm actually facing (instead of their imaginary ones) it could be helpful. I just want someone medical to sit with me and work out a way forward. I need better symptom relief- particularly pain relief, and I need my nausea and abdominal pain to be investigated. I don't believe I need a referral to opthalmology and I certainly don't need a referral to an eating disorder service. A referral to wheelchair services might be something we ought to discuss. I also need advice about an application for PIP, so that I can actually get to any appointments over winter. Some help with coping emotionally might be worthwhile, which is where I think the psychologist referral could actually be helpful.

I have so many things I need to discuss with my GP when I finally get to see him, but then my brain will probably go mushy and I'll forget half the things I'm there about..

I feel lost. I have loads of medical people around me, but feel like none of them are taking on the whole job of working out what needs to be done to optimise my quality of life. Maybe that's my job- but I'm too fatigued to deal with everything and too tired (and to be honest sick of doctors) when I see them to actually get round to sorting everything out. I yearn to see them to get help, but then get there and am desperate to escape, or my mind goes fuzzy and I can't remember all I wanted to sort out, or they're way too busy to deal with it all..

I'm in a mini-flare at the moment, and I haven't been very sensible with activity management, which hasn't helped. I may have been ill over 4 years now, but that doesn't seem to make it any easier to just slow down when I see a crash coming (maybe that's something else the psychologist can help with).

To be honest, I'm terrified about what the psychologist is going to ask me at my assessment. I have no idea what to expect. I don't like talking about my emotions face-to-face, particularly with regard to my illness. I'm hoping it will be blatantly obvious I don't have an eating disorder because I don't want completely irrelevant treatment. I think there are ways in which I could be helped by the psychologist though, so I hope we can move forward from an awkward start and get on well. I'll just have to wait and see how things work out..

Saturday, 9 November 2013

A letter to doctors from the chronically ill

Dear Doctors,

We, patients with chronic illnesses, know we’re not easy patients. We know it's difficult for you to truly understand the full impact of our illnesses on our lives. We know you can’t ‘fix’ us. That’s OK- we understand that it’s not your fault. We apologise if sometimes we really desperately want you to fix us and put you in the difficult situation of having to let us down; I’m sure you can appreciate that living with difficult symptoms for years on end can sometimes make us desperate. As our doctors you are the ones we turn to, but we know deep down that it’s not that you’re not trying or that you’re withholding a treatment that could make us so much better, science just hasn’t provided the much-needed answers yet. We know that there are people out there working hard to solve the mysteries of our conditions- and we are very grateful to them- but when every day of our lives is difficult in the meantime, we get frustrated by the slow progress sometimes.

Please don’t be scared of us- you might not be able to fix us, but you can help us, so please don’t abandon us and leave us to fight our illnesses alone.  Help us with the symptoms you can help with. Refer us when you are unable to help but think someone else may be able to. Despair with us when nothing can be done, but try to help us to see a way forward.

When we come to you with a new symptom, ask us whether we think it might be related to our chronic condition, but please don’t assume. Sometimes you might need to overrule us if it seems that we are blaming our chronic condition for something it is unlikely to be the cause of, or if we develop a common symptom of our condition for the first time. Discuss with us whether we feel that further tests are necessary- we know our bodies better than anyone, so are often best placed to make the decision as to whether something is likely to be serious. We are also subjected to more tests than most, and live with more uncertainty, so unlike other patients, we might be more willing to go for the option of ‘see how things go’. It’s important for us all to remember that just because we have a chronic condition, it doesn’t mean we won’t develop another unrelated condition. Many of us are actually at an increased risk, either because our condition alters our immune function, as a result of the medications we take or because of the lifestyle changes our condition necessitates (e.g. immobility).

Medications can be a burden for us. Popping so many pills can feel unhealthy, make us feel dependent, and can be a constant reminder that we are sick. If we ask to come off some of our medications, discuss the options with us. Explain the risks and benefits.

On the other hand, if we come to you about a specific symptom, it is normally because it has become unbearable. We will probably have already tried everything we can, and have resorted to coming to you for help. You aren’t our first option (because we don’t want to constantly bother you), we come to you when nothing else is working. When we come to you in these circumstances, please don’t turn us away without giving us something different to try, because we are often at the end of what we can cope with alone. If the relevant medications have possible side effects, tell us and let us make a decision. If they would react with another medication we are on, discuss options with us.

We aren’t like your other patients. We don’t come to you to be cured. You aren’t a stranger we rarely meet. We don’t see you as some divine being who knows everything and can cure everything. We have seen you look helpless. We know there is plenty that you don’t know. We are vulnerable, because we rely on medical professionals to keep us functioning as best we can. We know that we are a currently unsolvable challenge.

We ask you to be patient with us, to work with us and to treat us with respect and dignity. We ask that you see us as partners in our medical care, but ask that you don’t leave us to deal with this alone. Please bear with us and provide information for those that need it, to allow us to continue with employment or education to the best of our abilities, if possible, with the appropriate support, or help those that need them to apply for the benefits they need, so that they can live with a reasonable quality of life.

We aren’t asking for a cure, we’re asking for care.

With thanks,
Patients living with chronic illnesses


Note: this is purely based on the thoughts and feelings of one chronic illness sufferer- me- I share this on behalf of all sufferers but appreciate that some sufferers may feel differently about some of the topics mentioned. Inspired by Dr Rob Lamberts' post: A Letter to Patients with Chronic Disease (http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease) which I think is a must-read for chronically ill people to understand a doctors perspective, plus it gives some useful tips on dealing with doctors as a chronically ill patient.

Thursday, 7 November 2013

Today. Medical stuff beginning to end..

What a weird day..

First thing this morning I made 86 phone calls to my doctors surgery in 16 minutes, only to eventually speak to someone and be told all the appointments for tomorrow with the doctor I need to see have gone. I was told to ring for a same day appointment on Monday.. But I'm not free on Monday.. (Yup- unbelievable I know- but I do still have a life outside medical appointments..!)  I have no idea when I'll finally get to see him. I'm trying to make an appointment because I've had a letter asking me to make a doctors appointment about my vision. My vision is now fine, so there's no need really, but I feel I ought to touch base with my GP anyway, knowing how many letters he's had about me recently.

Then I went to a couple of lectures (evidence of the life I mentioned earlier, see), got back and rang gastroenterology because I still hadn't heard anything. The lovely secretary offered to ring my doctors surgery for me and chase things up. She rang me back to let me know that I have in fact been referred to the upper-GI surgeons (nice of them to tell me.. I'm assuming no-one will be cutting me open...), which is why gastroenterology haven't received a referral. She gave me the number of one of their secretaries who I rang; she said there wasn't an appointment made for me yet but that didn't necessarily mean my referral hadn't been received, and that it sometimes takes a while. I asked how long I should expect to wait to hear anything and was told that it depends how urgent the surgeon deems the referral to be- helpful.. but I do understand there aren't always clear-cut answers to such questions and sometimes it's better to say nothing rather than be misleading. So I'm still none the wiser, but am assuming things are plodding along ok through the creaky NHS system. I've been advised to ring back in a week if I've still heard nothing, so we'll see..

A letter came in the post today explaining the reasons for my referral to the CFS psychologist (my low body weight and low BMI- same thing, and clearly neither necessarily mean a psych problem *rolls eyes*) and detailing the health risks of being severely underweight.. Helpful. I realise the seriousness, but I need appropriate investigations of my nausea, not people getting the wrong idea and thinking I'm making myself ill by purposefully not eating or something.. Her pointing out that I'm likely to have a weakened immune system, fragile bones and lack of energy because of my weight really doesn't make me feel any better.. The letter also suggested that it may be appropriate for me to see my GP before my psychological assessment next week in order to be considered for referral to an eating disorder service. Shouldn't she actually do the assessment before assuming I need to be seen by an eating disorder service? Isn't that what the assessment is for? Talk about keeping an open mind.. I was fuming. The letter has been copied in to multiple people involved in my care so it will now go on my health record that I've been suspected of having an eating disorder- fantastic.

Thankfully I saw my consultant this afternoon who said he's already been on the case and has been in touch with the CFS physio and psych to say that he feels it is very unlikely that I have an eating disorder. So at least one person understands!! I asked what I could say to convince them that I'm trying my hardest to put on weight and he shrugged and said he doesn't know. I'm just going to have to play along and let them work it out for themselves it would seem. He said that my blood results had also come back more normal than would be expected with an eating disorder- practically everything was fine, even my iron stores were normal which was good to hear given that I've been off iron for a while now, the only thing slightly abnormal was a high albumin which he said was probably just due to decreased intake of food and fluid at the time causing effects of dehydration. He was delighted my nausea has decreased and that this has enabled me to put on some weight. I said I was disappointed that things haven't picked up a bit now that I'm eating well and he laughed and said to give it a chance- it's only been a couple of weeks! He said it will take a while for my body to start dealing with the nutrition properly and for me to start getting more energy from what I'm eating; apparently I should be looking at months rather than days or weeks, which is still positive because it gives me reason to hope for some improvement. I was pleased he wasn't concerned things haven't picked up already. He said it's important the nausea is investigated properly though and that it's quite likely I'll be needing a gastroscopy, which came as no great surprise. I said I'd been considering applying for PIP because it's going to be incredibly difficult for me to get around over winter because I'm reliant on my mobility scooter and she's not meant to be used in adverse weather, so it's probably going to mean A LOT of taxis, and asked whether it was a horrible process. He said 'quite probably, but that doesn't mean you shouldn't apply' and gave me details of a local organisation that apparently helps. So that's something for me to give some thought, I'm really not sure what I want to do about it right now.. He wrote a prescription for another bottle of prochlorperazine for me because I haven't made it to the doctors to get a spare bottle yet and he said he didn't want me running out and losing the weight I've put on otherwise he'd be cross, lol. We discussed my diet and he was keen for me to eat as soon as I can in the mornings, even if that requires taking my medication, waiting half an hour and then eating something once my nausea has died down, because nutrition is apparently most beneficial early in the day when the body is crying out for it having been starved overnight. I've been advised to prepare breakfast in the evening and take it to bed with me for the morning, because getting around in the morning is difficult, although evenings really aren't much better..! He said to sneakily eat in my lectures, particularly when I'm in all morning, which everyone has been telling me to do, and they've all been offering to write letters to anyone who doesn't accept an explanation that it's for medical reasons, so I might give it a go. I'm seeing him again in 10 weeks time, he wanted 8 weeks and the receptionist laughed, which is actually just as well because that would have been in my Christmas holidays! I was then sent to see my dietician (I make it sound like I went miles, it was in the neighbouring room..).

My dietician weighed me, thought I hadn't put on any weight, I was adamant that couldn't possibly be right, so we went to another set of scales which gave the same weight, then realised she wasn't comparing it to the right weight and I'd actually put on 1.8kg (just under 4lbs)- yayy! Pretty impressive in just over 2 weeks. We talked about how I can improve my diet and it's mostly a case of trying to get my protein intakes up. I need regular meals, but said that cooking regularly is a problem, because I need to be well enough to be in Uni and functioning in the afternoon. She accepted that, but said that ready meals might be a good option for lunch times. Cheese and biscuits is also now on my mental list of snacks to try. I also have to have milky drinks more, which seems to be a perpetual aim. So now it's just a case of putting everything into practice and getting my weight up further! Easy, right?!

Then I headed down to the pharmacy, already armed with a handful of syringes from immunology stock (given to me by my consultant, not stolen, promise) and got a bottle of my miracle med with yet more syringes. I've got quite a few unused ones still from last time too so I've definitely got plenty of syringes!!

Then I headed home and lay in bed, exhausted from a busy day... And then ate, a lot, all evening, because I do a lot of that right now! ;) Less nausea is awesome. I SO don't want to ever go through nausea that bad ever again. Fingers crossed..

So that was a (rather medical-orientated) day in the life of a chronically ill student. A couple of lectures and a ridiculous amount of medical stuff- joy!

Wednesday, 23 October 2013

Recent NHS encounters: the awesome and the awful!

So, I feel like I ought to do an update.. I've experienced some great treatment from the NHS and some not so great over the last week or so..

Firstly my fantastic, awesome consultants have been, true to form, fantastic and awesome. They can't cure me, but they help as much as they can and are supportive, which is the best I can hope for. My maxfax consultant discussed my nausea informally with me and gave me hope that further treatment options exist. My CFS consultant replied very promptly to my GP recommending that the gastroenterology referral goes ahead and also replied to my (possibly slightly desperate-sounding) email and arranged to see me in a cancellation slot. He has given me the same medication that helped before but at a lower dose (liquid so I can mess around with my dose to find one that works) to keep me going until I'm seen by the gastro specialist and is seeing me again in a few weeks. Hopefully my eyesight won't get messed up like before because it's a lower dose - I'm quite liking my working eye muscles you see..
My dietician also did all she possibly could. She was concerned because my weight has dropped to the lowest it has ever been throughout my illness but she was very supportive and said all she could to motivate me and try to make food seem appealing again- nausea is more convincing unfortunately, but as soon as it relents a little all her advice will definitely come in useful. And I'm really, really, really trying to implement her suggestions straight away- but it's HARD! The nausea has thankfully responded a bit to the low dose of prochlorperazine and I ate really quite well yesterday and am doing well so far today- I'm rather proud and am sure she would be too :) lol. We're both keen to avoid going down the route of other means of nutritional support if possible- it would be an absolute last resort- so fingers crossed and wish me luck! She is also going to speak to the dietician who works in gastroenterology who I'm likely to come across when I'm (eventually..) seen by that department.

The bad has been a bit distressing. My physio basically accused me of having an eating disorder. I'm young, female and severely underweight, so it does have to be a possibility on their radar- I understand that- but I'm fairly sure it should have been pretty obvious that I've been trying incredibly hard to turn things around. I'm not trying to get thinner, I'm battling as hard as I can to put weight on, it's just that the nausea is absolutely overwhelming. Nausea that bad cannot just be ignored! I was called immature for not continuing to eat normally despite the nausea- I'd like to see him try! He said he thought I ought to scream and cry and shout, because that's what someone in my situation should be doing. I was already on the point of tears (thanks to him pointing out all that's wrong with my health/life) and was trying so hard not to cry. Why do people want me to fall apart in front of them? What would that prove? He said he couldn't understand why I was laughing when I'm very ill, very fatigued and very underweight at the age of 21, but he knew that it was nervous laughter, he knew that I was worried and concerned, so why act like he thinks I think it's all a joke, of course it's not. He said the smile and laughter is a mask and there's something I'm not telling him, but what's the point in me telling him that I'm scared where things are going to go from here, I'm upset that my health has been declining for over a year, I'm upset that my health is an absolute mess and I'm terrified that I'm barely able to eat- it's all pretty obvious, pretty common sense, I'd be mad not to be concerned about all those things. Why can't he understand that I am trying so hard to eat, I'm eating literally as much as I can, but the nausea is overwhelming, it's literally horrific, and I just get full so quickly.
Physio has now been withdrawn because I'm not well enough or eating enough for it to be safe/beneficial- I'm on negative energy as it is, so there's no way I'd be able to build muscle. I do actually appreciate and understand what he means, so I don't disagree with him on that, but it's a bit disappointing. It was my only hope for some improvement in the short-medium term.
He said I wouldn't have been allowed into the service with my weight as it is because what's to say my weight isn't the cause of my illness? I explained that I haven't been severely underweight the whole time I've been ill. I'm not ill because I'm underweight, I'm underweight because I'm ill.
He also attacked my self-esteem even further saying things like 'you're really thin but not in a good way'. I know I'm scrawny, I'm well aware of it, and I'm conscious of it- I wouldn't choose to be this thin. My ribs stick out, my hips stick out, my arms are stick-thin - I wouldn't consider any of that attractive.
He kept asking me whether anything had happened in the past or whether I'd ever had problems with food in the past. I couldn't get through to him that I'm upset because my health is a mess, my health isn't a mess because I'm upset about something.
It all just feels overwhelming and I felt so misunderstood.. I know he means well. I know he's just trying to help and trying to make sure he isn't missing something vitally important. But it's just really hard to get across what's actually going on in my head, and convince him that he really has got me all wrong.

The other negative thing was a miscommunication. I was told last week that a referral had already been put through to gastroenterology. I had specifically enquired- twice- to make sure everything was going through fine. I was told on both occasions, by 2 different people, that a referral had been put through.. Yesterday I rang gastroenterology because I hadn't heard anything- they hadn't received a referral. Turns out the receptionists at my doctors surgery hadn't actually opened the letter showing up on their system and assumed that the letter faxed off to my other consultant regarding the referral was the referral itself. The referral didn't yet exist, and even the reply from my consultant was missing from the system even though I know he had replied, and the receptionist thinks she'd seen it at some point. I have a feeling it's probably sat in a mountain of paperwork on my overworked GPs desk- out of sight and therefore out of mind and not dealt with.. So frustrating. The other possibility is that my consultant has dictated a reply and is blissfully unaware of the weeks/months it takes for letters to get from his dictaphone to their destination, because the secretaries are also overworked. Either way, things haven't progressed as they should have done, and certainly not as I was led to believe they already were progressing!

Returning to the good- the doctors surgery is now dealing with it.. I rang again today and my doctor had written the referral letter and it was just waiting to be typed up.. It's not clear yet whether it will be put through as 'urgent' or not- I hope so, but I won't hold my breath and I'll understand if not.

Also good- everyone at the hospital the other day was lovely. As mentioned previously my consultant and dietician were great, but the receptionist was also very helpful, the nurse who took my blood was really nice, the people in pharmacy were lovely and even the porters were smiling and saying hi and commenting on my scooter. I honestly couldn't have asked for better treatment.

I believe whole-heartedly in the NHS. The system is unfortunately being pushed to its absolute limits at the moment, in part as a result of patients like me who have multiple health problems and require significant input from multiple departments long-term, I admit that. And with increasing numbers of elderly patients the problem is only going to get worse. The NHS is something to be really grateful for though and something as a nation we should be proud of and fight to preserve. It has it's faults- individual staff members and systems aren't always perfect 100% of the time, far from it, but that's life!

Friday, 11 October 2013

Gastroenterology referral

Have been really, really struggling today. Apologies to those of you who have had to deal with my moans and tears, you've all been amazing <3

I saw my doctor first thing this morning after desperately trying to get an appointment for the last 3 days.

I explained that my nausea simply isn't bearable, and from what I understand, it's most likely to be caused by 1 of 2 things:
1) my CFS directly affecting the balance or emesis centres in the brain
2) gastroparesis- delayed emptying of the stomach, which is more common in CFS sufferers

I said that I thought it made sense to test for gastroparesis given that it's possible, but said I wasn't sure how easy it was to get a gastric emptying study. My doctor said it wasn't something he'd be able to directly instigate, so he would refer me to gastroenterology, but would get in touch with my main consultant first to make sure he was kept in the loop (by urgent fax, so hopefully shouldn't delay the referral much).

This has really upset me for 2 reasons: 1) It's another department, another doctor, probably more testing etc. and 2) The referral is going to take 3-4 weeks- the nausea is *unbearable*.

I don't know how I'm meant to cope for another 4 weeks with nausea this severe. I feel like I've been abandoned to deal with it until I see the gastro specialist and I don't know how I'm meant to manage until then. I've had nausea for 4 years, but it's never been like this. Even when I do finally get to see the specialist, the likelihood they'll immediately put me on something that works is very slim. It makes me want to just march into A&E and get myself admitted. I'm sure they would- more because of my weight than because they would understand the severity of my nausea. But I don't want to be in hospital, I just want some treatment. I just want this oppressive nausea to stop.

I'm already under immunology, the CFS service, dietetics and maxfax. I have been discharged from 2 other services/departments within the last year. I'm possibly also being referred to ophthalmology at the moment (although I don't see why, so hopefully not) in addition to this latest referral. I'm sick of hospitals.

But then maybe it's a good thing. I need my nausea sorting out, and they're the most likely people to be able to help, and they may be able to explain/do something about my severe abdominal pains too, which would be fantastic- particularly if I could get off tramadol, which I'd really rather not be on. So there are positives, the negatives just seem far more obvious today. I think it's the 'straw that broke the camels back', I think I'm exhausted and have gradually been dealing with more and more and this last thing was just too much. Hopefully the next 4 weeks will absolutely fly by, or the nausea will get easier to deal with...

Thursday, 3 October 2013

Update 06/10/13: nausea and coping

I went back to see my doctor this week to explain that I've come off my nausea medications because of my vision and am therefore struggling with nausea and difficulty eating.

Unfortunately I've exhausted all options in terms of nausea medications. There was one possibility left to try but it turned out it would interact with my steroid inhaler and cause a potential heart problem, so it's just not worth the risk. The only other nausea medications left untried would have side effects too severe to be considered a viable option. I've therefore been advised to use the medication that caused the vision problems occasionally but as infrequently as possible, to avoid the vision problems, but to relieve the nausea to some extent. I feel nervous about taking something that I know causes me such a significant side effect, but I also cannot really tolerate the nausea, so it's going to be a difficult balance. The vision problem is not caused by any sort of damage, just dysfunction, so I'm not risking anything in that respect, but it was very unpleasant so best avoided if I can.

We then discussed my weight and tube feeding. He said not to be too resistant to the idea of tube feeding, because it could actually be very beneficial. It would give me some extra energy and make me fitter and healthier to some extent. He has another patient who now tube feeds who really resisted the idea, but has done really well on the feeds and now only has to tube feed when his weight slips back down. He also said it's best decided on when it's not a desperate measure, so now might be a good time really. At least right now it would be my choice and under my control, but we'll see. I need to discuss options with my dietician. We also discussed if I went ahead with it whether the tube would stay in-situ or whether I would pass the tube daily myself. That's one I'm not sure about. The obviousness of the tube does bother me. I know that sounds vain, but there's a difference between always wanting to look perfect with exactly the right make-up on and not wanting a tube taped across your face, advertising to the world that you are ill and tube-fed, I think it's a fair enough concern. Passing the tube myself would be an addition thing to get used to and would be really quite unpleasant, particularly while I got used to it. Another option would be to go for a PEG, a longer-term option, but this would involve surgery, so would be a more drastic decision, although easier to care for and much less obvious. The decision about going ahead with any sort of tube or not is the first decision to be made though, so one step at a time.

My GP then got deep with me. He was concerned how I was coping emotionally and mentally. We have a laugh and a joke and my appointments are always light-hearted, but he said he was concerned he wasn't getting the full story and I was fooling him with my happy, smiley exterior. For someone my age, I'm having to cope with a huge amount. My health is incredibly fragile and I'm on an intensive university course. At the age of 21 I'm having to get used to using a mobility scooter and struggling to get around. I'm having to constantly adapt to deteriorating health, having been going downhill for over a year. I have constant appointments and new symptoms to be dealt with. Life is pretty hard, it could be worse, but it's tough. He said some advice on how to cope with such adversity and some support might be beneficial. He gave me the details of a talking therapy organisation (an nhs service) that I could self-refer into and said to really think about it. He said it would probably be painful and difficult for me to talk about everything, but that he felt it would be a good idea. We'll see. I'm going to think on it. I'm not totally sure it's right for me. Digging over everything might just cause pain without resolving anything, and most of the time I really do cope fine.

I found it amusing that he wanted to see my vulnerability. He said he'd find it easier to understand if I went to him in pieces. But this isn't an acute illness, I've been dealing with it for 4 years. Yes I go to pieces sometimes, there's certainly evidence of that on this blog, but I wouldn't inflict that on my doctor if I could help it, he doesn't deserve to have to deal with a snivelling wreck, and it wouldn't achieve anything.

He wants to see me in a few weeks, not to review anything, just to see me. I think he wants to keep a closer eye on me and check that I really am coping. I think it struck him that we were talking about huge things like tube feeding in such a matter-of-fact way, and we just joke about my scooter, but I'm still only young, and these things are a big deal. For the first time I felt like a doctor was really trying to get inside my head, know what I was thinking and feeling, and get an understanding of my life. I appreciated him trying, and caring enough to try, but being that open with people doesn't come naturally to me. I'd rather come across as smiley and happy and jokey, with a sense of humour about the mess I'm in. He said he thinks it's a front and there's a lot going on behind the smile, but I've always been happy and smiley, it's part of who I am. But I suppose there IS a lot going on behind the smile. I do think a lot, I do get upset sometimes, I am scared about the future and I do feel vulnerable, so maybe he does have a point. I'm not dismissing the idea of getting some help coping, but I actually feel quite together at the moment so it feels a bit unnecessary.

That being said, I was struggling towards the end of the week. By Friday I was exhausted and my mood was all over the place, not helped by the fact I wasn't managing to eat much. Thankfully I've been home for the weekend, have had a restful time and am feeling much better in myself. At the moment I'm only just making it through to the weekend and am only just recovering enough in time for Monday, but I'm really thankful that I am still managing, even if it is only just!

Saturday, 28 September 2013

Restored vision, nausea & tube feeding

I can see again!!!!!! Thanks to my maxillofacial consultant, my vision problems were identified as medication-related; I came off my nausea medications and my vision is now completely back to normal. Such a huge relief!!

But yes, you read right- I came off my nausea medications.. And some of you probably remember the mess I was in before starting on these meds.. My nausea is inexplicably horrible, and I was in a bad way with it. Unfortunately it's flared up with a vengeance! The nausea meds were definitely working to some extent even though they were far from perfect, and it's tough without them. Certainly not worth the vision problems though!

Now I'm starting to think seriously about tube feeding. It's been mentioned twice now by my dietician. When it was first mentioned I was totally against the idea and found the thought of it terrifying and horrific, but I am slowly warming to the idea. It would mean I wouldn't have to worry so much about eating and trying to keep my weight up. Obviously it would be far from ideal, and would take quite some getting used to, but I'm running out of options.

Not being able to eat normally is making me feel quite low at times. The nausea is oppressive and I'm starting to feel overly-emotional because the nausea is horrible, I can't comfort eat and I'm running practically on empty. I think it's starting to make me feel even more ill. Force feeding myself is so hard and unpleasant, so maybe tube feeding would make things easier.

I just don't know how to feel about things at the moment. I feel so ill and so different. My emotions are all over the place. Distraction works well and Uni is a fantastic distraction but you can't permanently escape from your own feelings.

I am planning to see my GP this week but I don't even know what to say. I'm not even sure I can face starting new nausea meds again, but I can't stand the nausea either. I just feel lost.

My legs hurt, my arms hurt, my throat and my eyes are sore, I feel horrifically nauseous, I've been resting all day and feel no better; sometimes it's hard to look on the bright side.

Jess overly-tired + struggling to eat = not a good combination.

It's been a really exhausting week. I should be grateful though that I can see again and I'm on less medications, so there are little reasons for hope.

If anybody does have experience of tube feeding, I'd be really interested to hear what it was like to manage with. I'm still really hoping I don't have to go down that route, but it would be good to have some idea what I would be facing.

Sunday, 22 September 2013

Sight problems... struggling..

I feel like I’ve had a challenging week. I’ve got vision problems, and while they themselves are frustrating and worrying, I’m finding the chaos they’re causing even more difficult to deal with. I’ve suddenly had to make appointments and see people, explaining something I simply don’t understand. I’m scared. My vision is incredibly important for my chosen career, so it simply isn’t something I can cope with having a problem with.

I’ve already seen my doctor and an optician. The optician found a change in my prescription compared to my last eye test only 8 weeks ago. She also found weakness of my eye muscles, possibly related to my CFS. She wants me to be seen by someone who knows more about double vision to get to the bottom of my difficulties though. My doctor wants me to be seen by the maxillofacial team I am already under the care of, or neurology, because neurology would be ideal, but the wait would be significant, so if maxfax are willing to look into the problem, it would save time. The optician wants me referred ideally to an orthoptist. I just want the problem dealt with by whoever, as quickly as possible.

Life seems difficult right now. I just don’t know what to think about things, and I’m fed up of the constant challenges. I know life isn’t fair- the last 4 years has taught me that over and over- but there’s only so much an individual can take, and I really feel close to my limit at the moment.

The vision problems aren’t really stopping me doing anything at the moment, when it happens I can still see fine if I shut either eye, but it just feels like an extra thing gone wrong. I’m very likely to have another referral ahead of me, either to orthoptics or neurology. I just hate the idea of starting from the beginning with another health professional. I hate the idea of having yet another set of appointments, and having to explain my medical history to yet another person who will probably not understand what is going on. I want answers, but I’m scared what those answers could be.

I feel guilty because I know there are things much worse that could have happened in my life, and my vision problems are such a small thing when I put things in perspective, but I just feel like I’ve been pushed and pushed over the last year or so. My health has been going continually downhill for over a year- that’s a difficult thing to deal with.

A year ago I could walk fairly well- it made me sore but it wasn’t immediately painful and I could walk a decent distance. I could get around enough that it wasn’t a significant problem. The only support I had was one hour of mentoring per week to keep me organised in terms of deadlines. I had just been discharged from the CFS/ME service because my Occupational Therapist felt that I was managing my condition well. I had just started to get some facial pains, but was starting treatment and hopeful it would be a short-term  problem. Unfortunately I was about to have a huge relapse, affecting my mobility in particular, and my general health was about to deteriorate significantly over the year ahead.

Nobody teaches you how to deal with failing health. You’re not taught in school how to feel about it, or how to deal with all the appointments and everything that it necessitates. A small thing can feel like a huge addition to what you’re dealing with when you already have a chronic illness on your mind. It’s so up and down and I do cope relatively well and I put on a brave face and get on with everything a vast majority of the time, but I think sometimes you have to be honest with yourself about how you’re feeling. Right now I admit that I’m struggling. Half the time I feel upset and stressed about it all, the rest of the time I feel numb about everything.

I’ve had enough and wish I could have a break from my illnesses and everything they entail. It’s tempting to just stop taking all my medications, but that would have the exact opposite effect. I feel like I’ve got a lack of control over my illness, it’s bad no matter what I do at the moment. My symptoms have gone from being bad when provoked to just being bad. I have pain and nausea no matter what I do. There’s nothing I can do to stop my symptoms. Even lying in bed having a quiet day today I don’t feel well. Chronic illness is cruel.


I will bounce back. Physically my resilience may have gone, but emotionally it’s still there I hope. I have another appointment about my vision tomorrow and hopefully things will start to look a bit more positive, or at least it will be clearer which path I’ll be going down in terms of referrals or investigations. I’ll cope because there’s no other choice. I might be having a down day but I choose to be positive going forward and I will do all I can to look after myself and my sight.


Wednesday, 11 September 2013

Invisible Illness Awareness Week, 30 Things

1.     The illness I live with is: Chronic Fatigue Syndrome, also known as ME, commonly referred to as CFS/ME or ME/CFS. (+ associated problems that are occasionally listed as separate diagnoses..)
2.      I was diagnosed with it in: To be exact 01/03/2010, I think my appointment was at 8:30 ;)
3.      But I have had symptoms since: September (ish) 2009
4.      The biggest adjustment: not being able to give things my all. E.g. uni and my A-levels. Having to accept that my illness means that my best just isn’t going to happen right now, and that pushing myself will only make matters worse.
5.      Most people assume: That would probably be best answered by them. Before my scooter they probably thought I was pretty healthy, now they probably just think I get a bit tired and have some problems with my legs maybe. I don’t know.
6.      The hardest part about mornings are: waking up still feeling unwell, feeling unbelievably nauseous to the point where I can’t eat for several hours after I get up, still feeling almost as exhausted as I did when I went to bed the night before, trying to get my brain to function to some sort of extent to try and get me up and ready in a logical order, knowing that I have a lot of hours of pain and exhaustion ahead.
7.      My Symptoms: fatigue; headaches; muscle/joint/nerve pain; nausea; dizziness; strange cognitive problems at times; muscle weakness; post-exertional malaise (feeling ill after doing anything); loss of balance; sleep reversal/ strange combination of hypersomnia and insomnia; palpitations; breathing problems; cough (now only rarely- big yayy!); difficulty walking; facial pain; severe abdominal pain; randomly feeling very full; abdominal distention; slight unilateral foot drop; hypersensitivity to light; hypersensitivity to touch.. etc.
8.      A gadget I couldn’t live without is: my mobile phone. I use it to skype from to keep in regular contact with my parents. I check my e-mails, my facebook. I listen to music. Take photos. It’s my security when I’m out on my own because I know I can always ring for help if I’m taken ill or have a problem with my scooter. It is my connection with the outside world when I’m ill in bed for days. It’s light enough that I can manage it even when I’m unwell and can watch TV programmes on it when I’m stuck in bed but able to tolerate sound and light.
9.       The hardest part about nights are: lying awake in pain, feeling utterly exhausted but unable to sleep; knowing that most people are fast asleep and a majority of those that are awake are out enjoying themselves; Knowing that I’ll soon have to get up and face another day, however horrendous I feel.
10.   Tablets a day: Oohh dear. At least 22 per day at the moment. The minimum: 6 gabapentin, 6 hyoscine butylbromide, 2 tramadol, 2 paracetamol, 3 prochlorperazine maleate, 1 fexofenadine hydrochloride, 1 ferrous fumarate, 1 cholecalciferol. That’s not to mention my steroid inhaler 2 doses, twice per day, or nutritional supplements…
11.   Regarding alternative treatments: I have too much scientific knowledge to believe most of them would do any good... And my illness affects too many systems that I can’t see that they would really work. They’re not worth getting my hopes up over, I wouldn’t want to have to deal with the disappointment of some supposed ‘miracle cure’ not working. I’ve tried a few things in the past, and needless to say I’m still ill. More ill in fact.
12.   If I had to choose between an invisible illness or visible I would choose: if the question is whether I’d rather my illness was visible or invisible then I’d choose invisible illness, I think. But if it was a choice between having CFS (an invisible illness) or something else that’s visible, I may well chose the visible option, because I’m sure a lot of visible illnesses are easier to cope with than CFS. I do like the fact that if someone only sees me sitting down when I’ve rested lots they almost certainly won’t know I’m ill. It gives me a sense of control about who I tell or when I tell them (apart from the fact I now use a mobility scooter, kind of gives it away a little..). I know when my illness was truly invisible it did become problematic at times, like when people don’t offer help when you could do with a hand, or when no-one offers you a seat on a bus, or when people assume you are young and healthy so should offer your seat to someone older, or you get weird looks or hurtful comments when you catch the bus 1 stop or get the lift instead of going up one flight of stairs etc. I can see why people get frustrated by having an invisible illness- when you’re struggling like you wouldn’t believe and then someone laughs and calls you lazy..? Wouldn’t you feel a pang of jealousy that most people your age wouldn’t think twice about something that could be seriously painful or even impossible for you..? But being visibly ill isn’t easy either. People assume you need help. You get treated differently. People suddenly think you’re not intelligent because you can’t walk as well. It’s a strange world.
13.   Regarding working and career: If I get any worse I won’t get through my university course, and therefore won’t get to do the career I want to do. If this happens I will be absolutely gutted. Not massively surprised, but gutted. I’m very likely to have to work part-time if/when I do qualify- but that’s something that I could deal with.
14.   People would be surprised to know: that there is very little funding for research into causes of and a cure for ME in comparison with other illnesses. Loads of abnormalities have been found in ME patients, yet there is currently no real treatment. We’re just given a few drugs to help out a bit with a few symptoms and told to do less and rest more pretty much. Although the medical help I have received has improved now, to start with I was refused any painkillers because my difficulties were long-term. I was just basically left to get on with it- no follow up appointments, no treatment, no proper advice. I was left to work things out for myself- and make myself worse in the process.
15.   The hardest thing to accept about my new reality has been: that it is chronic. If I feel better one day than I did the day before it doesn’t mean a step closer to recovery or normality, it’s just part of the fluctuating nature of the illness. And you can’t even make the most of the days when you feel a little bit better, otherwise you risk having several unbearably horrendous days.
16.   Something I never thought I could do with my illness that I did was: Go on tour with a county wind-band. It’s not something I’d be able to manage now, but I’m proud that I did it despite my illness. Yes, it meant a lot of days feeling pretty naff afterwards, but it was worth it. I was lucky to have friends who sat on numerous benches and in numerous cafes with me; without their understanding it wouldn’t have been possible. I didn’t manage many rehearsals, and I only actually played to the end of one concert. But I was there and that’s something I’m proud I managed.
17.   The commercials about my illness: Lol, as far as I know there aren’t any. Maybe more people would have heard of it and understand more if there were.
18.   Something I really miss doing since I was diagnosed is: walking around without pain. I could walk as far as I wanted before I got ill. I could browse round shops for hours without even thinking about it, or wander around with my dog. Now I can barely walk at all. Thankfully I have got my freedom back thanks to my awesome scooter, but it’s not the same as being able to get somewhere completely unaided.
19.   It was really hard to have to give up: my life as I knew it. To start with I felt like I’d lost part of who I was. I realised that I’d always defined myself according to what I did, then I couldn’t do all that I wanted to do anymore.
20.   A new hobby I have taken up since my diagnosis is: ooo, staring at walls or lying in bed with my eyes closed.. I’ll go for staring at walls. Seriously, it seems so much more appealing when literally anything else makes you exhausted. And you can do it pretty much anywhere: sitting in bed, or sitting in your chair, or in lectures when you have lost concentration and have no idea what’s going on or how you got there! You should try it sometime ;) I’m not saying it’s thrilling, but it passes the time of day.
21.   If I could have one day of feeling normal again: feeling or being? I’ll assume being.. I’d do all the things I’d been needing to do for days/weeks/months while it took 1/20th of the time. And I’d see as many people as I possibly could and chat and laugh incessantly. And I’d run in the fields with my dog- just run and run. And I would do something nice for my friends and family for supporting me through this nightmare. And I would get loads of uni work done while I could actually think straight and concentrate. Blimey, it would be one busy day ;)
22.   My illness has taught me: that life isn’t fair + That you have to make the most of what you’ve got + That I never appreciated how much I had and how lucky I was + That nobody should  take things for granted + To appreciate normality.
23.   Want to know a secret: I’m scared I’ll never get better. I hope every day that I will, but there’s no way of knowing for sure, and that is terrifying.
24.    But I love it when people: Try to understand. Try to include me. Do nice things or send me nice messages when I’m ill in bed or have been feeling particularly rough or down. Are there for me when I need them, even if I don’t chose to talk to them, just knowing that they’re there is a huge comfort.
25.   My favourite motto, scripture, quote that gets me through tough times is: It’s not about waiting for the storm to pass, it’s about learning to dance in the rain. It just reminds me that there are things that I can enjoy even while my life is somewhat limited. There’s no point in sitting around waiting to get better before I do anything in life, it’s about appreciating and enjoying what I can do- even if that just means appreciating the normality of it rather than the activity itself.
26.   When someone is diagnosed I’d like to tell them: It won’t be easy, but you’re stronger than you think you are. Try to re-evaluate your priorities and appreciate that it’s not what you can do but who you are deep down that counts. Accept help. Don’t push people away. Explain to someone, anyone, what you’re going through.
27.   Something that has surprised me about living with an illness is:  how hard it is to wake up ill every day and not see the end in sight. How hard it is to live in the present and not look back at the past or dread what the future might hold. How difficult it is to deal with the fact that illness is unpredictable and you don’t know what’s around the corner.
28.   The nicest thing someone did for me when I wasn’t feeling well was: I won’t pick out an individual thing, because every one of my really close friends has been continually amazing, and my family have been incredible. It’s not one thing anyone has done for me that was especially nice, the thing that is especially nice is the fact that I still have such amazing people standing by me, despite not always coping perfectly through such a rough time. I’ve given you all some tough times, and you’ve done so many little (and sometimes big!) things to keep me going, either by physically helping me, or emotionally helping me through some dark times, so thank you.
29.   The fact that you read this list makes me feel: awkward. It’s pretty personal. But I hope it’s helped you understand me, but more importantly M.E. and invisible illnesses a little better. Also, it makes me feel grateful that there are both strangers and friends of mine out there who have made the effort to read this because they care and they want to understand. So thank you.
30.   Something I want people to take away from this: that chronic illness of any kind is a pretty grim experience; that they should try to appreciate the small things, and the normality in their lives; that doctors can’t make everything better- they don’t always have all the answers; that just because someone looks healthy on the outside, it doesn’t mean that they’re not feeling awfully unwell inside- don’t jump to conclusions.