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!