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.