Friday, 31 January 2014

Gastroscopy + medical and Uni updates


Well I've survived my first (and hopefully last!) ever gastroscopy! Yayy! Anybody squeamish might want to skip the next paragraph...

I will admit that the gastroscopy was really not pleasant. Someone shoving something down your throat, through your stomach and into your small intestine and pulling bits out isn't exactly natural though, so it's not really surprising. They took a lot of biopsies (nobody panic- everything looked fine- just to check for H Pylori, the cause of stomach ulcers), which is seriously unpleasant, a kind of pulling sensation that makes your bowel spasm. Yuck. They say open (giving instructions to the person controlling the grabber) and you think urgh not again and then they say close and you wince as you feel your stomach/bowel ripple. The procedure really was quick though, although it felt quite a long time when you're going through it, I doubt I was in the room more than 10-15 minutes. They pumped quite a lot of gas in which makes you feel bloated and the anaesthetic throat spray makes you feel like you can't swallow and is uncomfortable; it really stings making you cough and splutter when they spray it on. You feel a lot of pushing and pulling and you can feel the scope moving around inside you which can be really quite uncomfortable, but I wouldn't say particularly painful as such. Not sharp pains anyway. I have been in pain since though, I assume from the biopsies, but I have also been eating chocolate which I know my body doesn't like at the moment, so that could also be the cause (gastroscopy was for nausea, weight loss and abdominal pains). They've been quite severe sharp crampy pains, but eased once I napped for an hour or so. I don't know whether it's normal to get quite such bad pain afterwards, I don't remember it being mentioned, so it might just be me..

It's been 36 hours and I'm still experiencing some abdominal discomfort (although not necessarily exclusively resulting from the procedure, it is why the procedure was being done after-all, but the abdominal pain has been worse than normal) and a really, really sore throat (which is definitely caused by the procedure); every time I swallow it's like swallowing shards of glass.

I chose to have the gastroscopy done with just local anaesthetic spray, no sedation, because I don't tolerate drugs very well, several of my medications reduce activity in the central nervous system so may well interact and it's just too dodgy to risk with my CFS the way it is. So I was fully aware throughout. It was the right decision for me. I knew it would be unpleasant- and it definitely was- but at least I felt fine immediately after the procedure (just numb and then sore/in pain- but that would happen with sedation too). If you're anxious then go for sedation, but if you think you can cope without then go in knowing it will be horrible but over quickly and you'll be fine. You will gag, it will feel horrible, but you'll survive!

Fasting for it was not fun. Ironically I have had literally no appetite at all for months, yet when I was unable to eat for 5 and a half hours (4 hours before, 30 mins being consented/having the procedure, 1 hour afterwards), it felt like torture. I have to fast for 6 hours for my ultrasounds next week but thankfully they're at a better time of day so I'll sleep through some of it and I rarely eat before midday anyway, so it shouldn't bother me. I have no idea how I'm meant to gain weight when they keep making me fast for things though?!

Thankfully everything looked 'reassuringly normal' according to the doctor doing the gastroscopy, which is definitely good to hear when the gastroscopy request was put through as 'urgent', although I never did think they would find anything seriously concerning. I was hoping they'd find something though because I'm desperate for my abdominal problems to be something fixable- I really do need to be able to eat well and put on weight, things have got pretty desperate.. I have ultrasounds next week so hopefully either my biopsies from the gastroscopy will come back positive for helicobacter pylori (which is treated with triple therapy- 2 antibiotics for a week and an acid suppressor) or something fixable will show up on my ultrasounds. I will be very frustrated if everything comes back 'normal', although I know it's a possibility, because it could be due to ME or IBS.

Medical update

In terms of a general medical update I've had a couple of appointments since I last updated you all and have a few more lined up.

I'm being referred to a falls and syncope department because of my dizziness and collapses- my consultant thinks it could be related to blood pressure problems/dysautonomia-type issues. I've been advised to increase my fluid and salt intake until then. It seemed like I'm being referred to the CFS specialist in the department so at least they'll have a good understanding of my condition. Hopefully it will be something that can be helped.

My vitamin D level is being checked by one consultant and all the usuals (iron etc) by a different consultant. I ended up being needled twice in four days, resulting in a very sore, bruised arm. Humph. I do realise it's for my own good rather than their amusement though. Will wait and see whether anything shows up. I've been off supplements for a while now so a deficiency is a possibility, although everything was still fine last time they were checked.

I finally saw a GI person- at last! They think there's nothing serious going on but I've obviously had the gastroscopy, mainly to check for ulcers, and have some ultrasound scans booked for next week, mainly to check for gallstones.. We'll see.. He's said if everything comes back clear I should be referred by my doctor for a colonoscopy to look at my large bowel- nice... Hopefully it won't come to that but if it does, then I'll just have to deal with it. He came across quite disinterested, which makes it quite difficult to give a full and accurate history. I'm not sure the problem was fully and accurately understood, but we'll see- either they'll find something or they won't and if they don't then I'll try to explain further and see whether any other tests are then indicated.

I've seen my dietician recently and am supposedly on an unreal schedule of nutritional supplements- 1 VitaSavoury, 1 Fortisip and 3 ProCal shots in addition to everything I'm currently eating every single day. That's about 900 extra calories.. And we're not talking short-term; 6 months was mentioned. I was advised that even if I'm able to start eating well again I have to stay on them.. My BMI is now not much above 14 so things are getting to the point where I'm practically in the situation of having force feed myself these or get tubed. Ugh! The massive problem is that I'm really not tolerating the supplements at all. My nausea and abdominal pain flare up and they upset my stomach; I really do want to gain weight but they just make me feel really really unwell.. It puts me in an impossible situation.. My dietician and I keep missing one another's calls over the last few days but hopefully we'll manage to speak soon and discuss where to go from here.. So frustrating!

I'm still in bed a lot. I'm not actually sleeping brilliantly at the moment (sleep schedule is a mess), but am needing to rest a lot. I'm struggling with fatigue and dizziness in particular. Trying nutritional supplements and the gastroscopy has meant my abdominal symptoms have been a lot worse but hopefully they'll settle down soon. I feel really ill at the moment to be honest- I don't know how to describe it but I feel really run down and just unwell in general. It's like having a bad infection. Things are physically really difficult and I'm just not managing as well as I used to.

Uni update

I've stopped attending Uni for now- last week ended up being my last week. I just couldn't do any more, but it was basically when I planned to suspend studies anyway so it worked out ok. Thankfully stopping has given me a bit of energy to be able to say goodbye to people- I know I'll crash a bit when I get home from all the meals out etc, and my throat is worse from all the chatting today, but I really, really don't care. I've got literally months ahead of me to recover. My mum has been staying with me for a few days because of my gastroscopy so has sorted my room here out which is great- one of those jobs that has really needed doing for a long time but I just haven't been well enough, so that's 1 less thing for me to worry about. Just my room at home to sort out to fit all my stuff from here into now- almost certainly another job for my poor long-suffering mum!

I recently had a really unpleasant appointment with one person (external to the university) who is meant to support me who basically told me to just give up and not bother to finish my course- I was furious and felt very unsupported, but I did then have a very very supportive meeting with someone in my department the same day who made me feel much better about everything and I was made to feel wanted and supported. They understood that it was all difficult for me, but also understood that time out was totally the right decision. I was praised for dealing with everything in a mature and professional manner which was nice. I felt very much like they truly want me to progress and get to the end of my course which will make returning feel easier. The people who organise my disability support have been really lovely and made this difficult period easier too.

Things are being sorted for me in terms of the suspension of studies; people are talking about me in my absence which I always hate, but I'm very appreciative that someone in my department is helping to sort things out. It seemed like they're likely to allow me to do exactly what I have asked in terms of resuming my course which would be great. None of any of it is ideal, but I know it is necessary.

Over the last few days I have been saying my goodbyes before leaving my university city and moving home for a while (although I will be travelling back for all my medical appointments).

It will be a long 8 months at home but will hopefully bring about much-needed improvements in my health, which has to be my priority right now. Saying goodbye to everyone has been hard- I've had really lovely cards and gifts from my Uni friends- I've been made to feel very loved! It's been a really difficult time, and certainly not without tears (!!) but I know I've made friends for life and will keep in touch with people; I'm looking forward to being back with them all in September (although I'll be in a different group and year group *sad face*) and I will catch up with people when I'm back up for appointments which will be nice!

Wednesday, 22 January 2014

Suspension of studies due to illness

I was going to wait until after a meeting tomorrow/another meeting next week to post this, but now just seems like the right time. If I do a massive U-turn (v unlikely) then that would be brilliant, but this certainly reflects where things stand at the moment, unfortunately.

The time has come for me to accept that I've got too ill for my course right now. My body is failing- it can't cope any more- *I* can't cope any more. I'm asking too much of my body and my health is deteriorating with increasing momentum over time. I can't expect that to change without changing what I am expecting from my body.

I saw my main consultant the other day and he advised time out from Uni. I'll be honest- I was absolutely gutted. I'd been really hoping he'd be fine with the idea of me just cutting down my hours and staying a bit (although deep down I do know I'm not really well enough to even do that), but he was clear that the time has come for rest. He has been supportive of me staying until now, so I totally respect that the call had to be made at some point, and now is that time. Everything is incredibly physically challenging at the moment, my body is the unhappiest it has ever been, my condition is wreaking havoc, my body is self-destructing. I hate ME/CFS for doing this to me.

The longer I push and the further I let my condition deteriorate, the harder it will be to make any improvements, and the longer it will take to get better. I have to step away and give my body chance to heal to some extent. My consultant has said that he accepts that it's going to take me a lot longer to get to the end of my degree, and that I need to accept that too. Logically it makes sense, I understand the reasoning and I am fully aware how ill I am and how bad things have got, but emotionally it's all still difficult to accept.

Time out is going to be hard. It will be easier on me physically (although I'm doing VERY little at the moment and every day is still a HUGE challenge to cope with because of constant symptoms), but psychologically it's going to be very challenging. I will be a full-time ill person- exactly what I've been trying to avoid all these years. My life will be on pause. Life will be carrying on without me. I will be falling behind my peers. My friends will be living life and I'll be barely living at all. The thought of it scares me and is frankly heart-breaking.

I feel deeply disappointed. I feel terrified of the unknown. I'm really going to miss everyone while I'm away, it's going to be 8 lonely months, and I'm scared everything will have changed when I get back. I'm terrified of joining a new year group; just the idea of going into a lecture theatre with a whole new group of people and not knowing who to go and sit by makes me want to cry. The thought of my friends graduating and leaving me behind to face finals upsets me.

I have to do what is right for my health though, and with the state my health is in at the moment, I simply don't have any other option. I cannot attempt to keep up. It's all got too difficult. I'm just not well enough.

I feel like I'm letting go of my purpose in life. I feel like I'm just going to disappear into the shadows for months on end. I'm going to have months on end of nothingness, interspersed with random hospital appointments.

My biggest fear is that it won't help, that I won't get better, that I'll end up stuck as a full-time sick person (no offence to those that are, but I'm sure you totally understand that it's not a life that anyone would choose!). What if I'm just never well enough to get to the end and get the credit for all my hard work? What if I'm never well enough to cope with the career I'm aiming for.. Or any job for that matter?! I just have to hope my body will be able to heal itself, at least to some extent- I'm not expecting miracles, although they'd be nice- I just want to be well enough to cope with Uni again in September, even if that's not full-time and with all the support I require now. That would be ok. I just want to be able to get to the end one day. Ideally sooner rather than later. But I know I can't push.

I feel like I'm going out into the unknown. Focusing 100% of my energy and life on getting better. My illness has been an inconvenience I've tried to ignore up until now (although it's been fairly impossible), but now I'll have no distractions. I have to face my reality.

I may be really ill now but it's a starting point. It's where I'm working from. Hopefully I will start to see stabilisation and then steady improvements. Hopefully the function I've lost over the last few weeks, months and years will start to be regained. That's the aim. Now I just have to hope it becomes reality and do everything in my power to make it happen through positive inaction. Doing nothing and resting is my only weapon against ME/CFS, I admit it's a bit of a naff one, but science hasn't come up with anything better yet, I just have to hope my body has it's own resources to get this beast of an illness into some sort of remission.

The future seems bleak. The future is scary. But I am finally putting my health first and hopefully things will start looking more positive at long last.
Wish me luck people, I need it. And please keep in touch, I need that too.

I wouldn't have got this far without all the support I have had so thank you so, so much to every single person who has helped me keep going over the last few years. I really am so grateful to you all.

Sunday, 12 January 2014


I've been finding accepting my illness difficult recently. It's fairly normal for me to feel this way after a significant reduction in ability. It just seems unreal and unfair and I just can't get my head around the fact that this is how my life is for now.

I still see the state I'm in as temporary, and I mean properly short-term, not just being hopeful that things will improve in the future, which would be a helpful attitude to have. My current attitude makes it difficult for me to contemplate making big decisions about things like my university course, because I'm still thinking that there could be positive changes just around the corner. Accepting that that's now not particularly likely is really difficult. I am now living with my new level of function following my relapse, I'm not sure I'm going to come out of this relapse any further, for now. I've been significantly more ill for 8 weeks now, if I was going to bounce back, I would have done by now, judging from prior experience. I hate admitting that..

Talking to my psychologist the other day, she was saying that the people who have eventually made the most progress with their condition, in her experience, were those who had learned to work with their condition instead of constantly fighting against it. It makes sense- it gives your body a bit of breathing space to be able to recover rather than it being pushed to the limit (and beyond) all the time. But to work with the illness I have to accept that it's part of my current reality, and accept it's current severity as well as it's existence. I'm finding the prospect of that hard.

I need to feel more in control of my condition and therefore I need to recognise what I can do to influence the day-to-day symptoms my condition causes. I can rest, I can take my medications regularly, I can attend all my appointments, I can make sure I eat a high-calorie high-protein diet, I can be kind to myself and focus on looking after myself. These things are things that I have control over that can help me have some level of control over my condition. Some of these are actually made more difficult by the condition itself, but I have to accept that and also accept that I will never have absolute control, but I do have some control.

I need to see that there's a middle ground between fighting this illness every step of the way and completely giving up. I need to learn that I can do some of what I want to do, but not all of it, probably only a minority. I need to learn self-control and how to say no, for the sake of my health, even in difficult circumstances. I need to accept that I need to respect the limitations this illness inflicts on me.

What I find even harder to accept than the illness' effect on me, is the effect it has on all those around me. I keep having to cancel things at Uni, which has an effect on other people, I'm having to rely on others to do things and I just can't contribute in the same way that I used to. I hate that, I feel like a parasite- living off and draining the resources of others.

I have a few appointments coming up and I'm trying to stay hopeful but realistic. I need to have reached some level of acceptance of where I'm at to be able to share my current reality with those looking after me medically. I need to get across the devastating effect this condition is having on me to the consultant overseeing my CFS care, so they can understand where I'm at, even if there may be very little, if anything, that can be done about my deterioration. I'm also seeing an upper GI surgeon for the first time- I need to not let my CFS get in the way of me getting all my symptoms and their severities across to him- I need to find the energy to write a list of symptoms in advance to jog my memory in case of cognitive problems or speech issues resulting from fatigue. I don't like hospital appointments- but they're my only way of possibly getting any answers- I need all the help I can get at the moment, so I need to accept that they're part of my current reality.

I came back to Uni after an extended break, and initially tried to rejoin my course without taking my deterioration into consideration. I pushed myself through day 1, and unsurprisingly ended up in bed, very unwell, missing days 2 and 3. I contacted people about course adjustments, realising there was a definite problem, and returned for a lecture on day 4 and an afternoon on day 5 (in addition to a medical appointment). It's now the weekend and I've been feeling really ill- I could feel that I'd seriously overdone things on the Friday, but it was still a lot less than I used to be able to do, so I have found the level of payback frustrating. Even though I know I'm significantly more ill, having it so blatantly proven to you, is undeniably difficult. The discussions about my University course are going to be very challenging, but will hopefully be the start of a change in attitude. I hope I will start being kinder to my body, fighting against it less, and will start to push it to it's limits less, giving my body a better chance of making some improvement.

That being said, I was in bed a majority of the time for 4 weeks, and it appeared to do me very little good at all, which makes the idea of taking a step back and doing less, to leave my body with some spare energy to heal, even less appealing. I need to recognise that I was quite possibly still pushing my limits while in bed though- I was severely unwell and was pushing myself by sitting up as much as possible, I was listening to music and watching some TV, I was venturing downstairs and eating. All these things are tiring while this ill, so perhaps I was still not allowing myself extra energy to improve. I had a few days where I knowingly really pushed my limits, so some of the time in bed was spent recovering from additional flares/payback, rather than the underlying relapse.

I know I need to accept this illness and my current reality, but I keep finding myself feeling cross with myself- my body and my condition- for not just getting better and allowing me to do what I want. I need to learn to be ok with being ill. It's been 4 and a half years, I need to accept that. Relapses always take me a step away from acceptance, because they're incredibly difficult- physically, mentally and emotionally- this relapse was particularly brutal, so I suppose I've still got a long way to go before reaching my goal of acceptance.

Thursday, 2 January 2014

Insights gained through Illness

Given that my last post was fairly downbeat and a lot of my recent posts have been borderline whiney due to relapse-related issues, I thought now was a good time to reflect on what I'm actually thankful for as a result of this illness. I would never have chosen to be ill, I hate this illness wholeheartedly, and am desperate to one day be well again, but I have learnt a few things as a result of the experience.

I'm thankful for the insight it has given me into suffering and long-term ill health. There is a significant proportion of society that I could never have truly empathised with had I not had the experience of chronic illness that I've had. You just don't realise how hard it is to live with constant symptoms, every day, until it becomes your reality.

It's a massive cliché but it's made me grateful for the small things in life. The little things that make me smile each day. When you leave the house for the first time after a relapse you really do properly notice your surrounding- how green the grass is, the clouds in the sky, the wind on your face- just being outside in nature feels like an experience. I never felt that way before I was ill. I admit that a majority of the time I still don't now, but those moments when you really are just in awe of your (perfectly ordinary) surroundings are amazing. On a daily basis it's normally little things like seeing my dog look really comfy and content or watching something funny on TV that make me smile. Those little things really do matter.

It's made me appreciate what's truly important: happiness, quality of life, friends, family and health.
It really is true that you don't know what you've got until you've lost it- I definitely didn't appreciate my health. I actually thought I was a bit sickly because of having a few allergies and my (then mild) asthma meaning I was prone to chest infections... I don't think I once thought about how lucky I was to have the freedom that being well gives you.
It has also made me appreciate the people in my life, and helped me realise who my real friends are. I'm lucky to have friends and family who have helped me through some of the challenges I have faced as a result of this illness. My friends and family are amazing people and I'm very sorry for putting them through so much. Starting to blog and letting people into my little illness bubble that had previously been so private was a difficult decision, but I'm glad to now have more people around me who have a greater understanding of my situation. Illness can be a lonely experience, so little messages of support from real-life friends and fellow sufferers have really helped me through some very difficult times; I'm enormously grateful for that support.

It's made me realise how accepting a lot of people are, and that I don't need to hide my illness away (which is good, because I now can't, lol). My illness makes me different, but I'm lucky to have people around me who treat me as a respectable, intelligent human being but also don't ignore this difference when it needs to be worked around or try and deny it's existence, instead they accept it as part of my current reality and try to make things accessible to me, without making it a focus or a big deal. I couldn't ask for more.

I'm grateful that I have more awareness about the inequalities and injustices in society. I was- like most healthy people- ignorant to the unfairness and difficulties faced by disabled and chronically ill people. Nobody with disability or chronic illness has chosen to be in the situation they are in, and they don't deserve to be victimised or singled out as a result. They deserve to have access to all that healthy people have access to, and they deserve to be treated with dignity and respect. Reasonable efforts should be made to make things inclusive, not because disabled people should get any sort of 'special treatment' but because they deserve to be able to do all that well people do and often take for granted. We should be analysing our benefits system and checking whether the right level of support is going to the right people. We should be looking at the assessment system and evaluating whether it really assesses the ability to work. We should be looking at why so many decisions regarding some conditions are then overturned at appeal after a costly process. There should be support to help disabled people into appropriate work if they are well enough, and plenty of support available for those that are not. And we should all care about this. Any one of us could become unable to work due to illness, accident or injury tomorrow and need to claim benefits. And as a society we should want to work towards equality, want to support those most in need to be able to participate and be included. I'm glad I'm no longer completely ignorant about these issues.

Serious illness makes you aware of your own vulnerability and mortality, and that of those around you, which has made me treasure the time I spend with family and friends more. None of us know what is around the corner. I'm grateful to have realised how precious life is early on, so that it doesn't just pass me by.

I'm grateful that it's made me very aware of what I want in life but also that ambition isn't the end of the world. More than anything I want to be happy. Completing my university course and getting the career I want would be phenomenal, I want it so much, but I'm starting to realise that I would be stupid to jeopardise my health to get there. Maybe I'll get there alongside my peers, maybe it'll take me longer, maybe I'll never get there; as long as I manage to achieve a reasonable quality of life and am happy, that's all that truly matters.

It's taught me that life is very unpredictable and I'm grateful to have that understanding. I live more in the moment and appreciate the experiences and opportunities that come my way. None of us can know what our future holds (even if we sometimes desperately wish we could!!), and we will never have full control over this, so it's important to be adaptable and accepting of change.

It's taught me to be less quick to judge. When people jump to the wrong conclusions about you, it makes you wonder whether you have done the same to others. When I was invisibly ill I was often presumed healthy, now that I'm normally visibly disabled (because I'm on a mobility scooter) I'm sometimes presumed thick/mentally incapable. I'm more cautious not to make assumptions about things now as a result. It's so easy to take things at face value or judge because of stereotypes and be completely mislead. The old saying is true: don't judge a book by it's cover.

I'm surprised by the number of things my illness has taught me. I hate this illness, but in the future I think I will look back on this period of my life and see that it has shaped me into a better person, maybe a little bitter at times, but mostly better. I've lost a lot because of this illness, and I fear that further losses are just around the corner, but I have gained valuable insights from this experience too.

Happy New Year- an oxymoron?

Happy New Year feels like a bit of an oxymoron to me at the moment. The thought of having another year of the unknown and suffering ahead of me doesn't feel like something to celebrate. The new year just emphasises the passing of time. The passing of time during which it's difficult for me to feel productive and do the things I enjoy because of constant symptoms.

Of course I start this year with the hope that this will be the year that brings improvements in my health, but that is largely not under my control, or anyone's control for that matter.

My health is a massive burden at the moment. There's barely an hour passes by that it doesn't cross my mind. How can I ignore something that is completely unrelenting? How can I forget about it when the pain and illness is constant? How can I forget about it when every time I move pain surges through me and every time I stand up I feel dizzy and sick?

I had a fantastic New Years Eve seeing a show up in London, it was amazing, and people couldn't have been more helpful- the staff member looking after me at the theatre, the bus drivers, the assistance people at the train station etc. Apart from a few hiccups with no ramp turning up to put me on one train and a bus stop being closed for roadworks everything went very smoothly. I coped surprisingly well given how ill I had been for the 3 days prior to the trip- I had been in bed a vast majority of the time and had spent the rest of the time on the sofa, with difficulty being sat up. Thankfully I was a little better the day before so able to get bathed and my hair washed giving me less to do on the day. On the day I felt undeniably unwell, but not to the extent that it hampered my enjoyment of the show (even if I was concerned I might pass out at one point), and I got through the day running on adrenaline and sheer determination (Not exactly advisable).

Having a great New Years Eve has unfortunately, predictably, meant a difficult New Years Day. I was in a lot of pain and feeling dizzy and unwell and struggled to eat much due to fatigue, but thankfully the memories of such a fantastic day have meant that I really don't mind. I have felt dreadful, but I'm well aware why and I'm definitely glad I went- I have no regrets.

It does however mean that I'm starting the year feeling very unwell, so the idea of 'Happy New Year' really doesn't resonate with me. 2014 simply follows on from 2013 and I wasn't miraculously cured at midnight sadly. I'm starting 2014 in a much worse state than I started 2013, anyone who has followed my blog for a while will know that my health has deteriorated significantly since I started blogging in February 2013. Even if things do improve this year, and I'm hopeful that they will, recovery is not going to happen overnight, and it's likely to be a challenging and difficult process, with repeated crashes in addition to any improvements, and I'm still going to be facing symptoms every day for a long while yet. Do I relish the prospect of all this ahead of me? No, not really. And that's the very best case scenario!

I would say the likelihood of me having to make difficult decisions about time out from Uni or going part-time this year is high. I'm not even sure I'll make it through the first few weeks of this term. That's not a nice way to start the year.. I'm mostly housebound at the moment, and spending significant proportions of some days bed-bound. I'm therefore starting this year in a situation I've never really been in long-term before. I don't know whether I can live independently enough to be away from home at Uni. I don't know whether I'm physically capable of my course.

I'm starting 2014 frankly scared about the future.

Most people are making New Years Resolutions- a lot of people are choosing to lose weight (I'm battling to try to keep my weight high enough to stay alive) or exercise more (I can barely walk). My only wish is to feel better so that I don't have to put my life on hold. I can't make that happen. I'm too ill and too underweight to do physio, my condition is still incredibly active, I don't feel able to increase any medications any further because of risk of side effects, cognitive problems mean I regularly forget to take my medications, I'm too tired and asleep too much to eat enough to put on weight, I don't feel hungry or thirsty so can forget to eat and drink, I'm teetering on the edge of depression so am losing motivation to some extent.. I'm reliant entirely on the underlying cause relenting. When that will happen is anyone's guess..

So of course I hope you all have a good year ahead of you, and I hope those with illnesses have positive changes in your health ahead of you, but do I think me wishing you a 'Happy New Year' will make that happen? No. I do hope everyone has a better year, but I wonder if I'm not the only one who is not relishing the prospect of 2014, despite being pleased to see the back of 2013!?