Saturday, 28 September 2013

Restored vision, nausea & tube feeding

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

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

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

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

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

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

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

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

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

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

Sunday, 22 September 2013

Sight problems... struggling..

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

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

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

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

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

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

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

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


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


Wednesday, 11 September 2013

Invisible Illness Awareness Week, 30 Things

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




Tuesday, 10 September 2013

Sick of being sick

It's a bit of an obvious thing to say given that I have been ill with CFS for 4 years, but right now I'm sick of being sick. I've been in bed for a couple of days now and I know that's nothing compared to some people out there, but it's getting mind-numbingly boring. I tried to get up and go out this morning and nearly passed out in the shower, and then nearly threw up, not the ideal start to the day. I've retreated back to bed, in the hope that a second attempt later on will go better!

I had a couple of very near-faints yesterday. One was trying to walk to the bathroom, so kind of fair enough, I quickly fell to the ground, put my legs up the wall, and was rather pleased to have saved myself from the nasty coming-round. Another, however, was when I was propped up in bed. I was somewhere between lying and sitting, really wouldn't have thought I could manage to pass out like that, but my wonderful body tried. At least it was easy to just slide down the bed to get flat.. The stupid thing is, if I'd fully fainted without moving anywhere, I couldn't have fallen anywhere- I was well supported- so fainting wouldn't have achieved anything anyway.

I had a dizzy, nauseous, painy day yesterday, but thankfully not as painy as the day before. I'm back to my normal levels of medications now, which is good. Unfortunately I actually felt more in need of silence and my eyes shut most of yesterday, so got really, really bored. I can always tell I'm starting to make progress when I start to feel bored. When you're desperately ill, you don't feel bored, you just feel sick, really sick. You don't care or think about anything really, just feeling less sick, you don't really feel bored. It's therefore always a good sign, even though it means you're still too ill to do stuff, it means you're getting closer. So although I hate feeling bored right now, I do see it as a positive thing.

I'm not actually sure whether this little flare was caused by a cold or not. The cold doesn't seem to have come to anything. Maybe I just overexerted. I don't know. CFS is a mystery.

Flares are always worrying times, because you don't know which ones are the start of a relapse, or which ones you're not going to fully recover from, so when you start to see improvement, it's always a huge relief. It's not the flare I mind particularly (although they're pretty unpleasant), it's the fear that comes with them, and the fact those fears quite often become the reality.

Sunday, 8 September 2013

A cold is never 'just a cold' with CFS

So when I mentioned the other day that I thought I was coming down with a cold, unfortunately it was true..

Now I'm experiencing a flare-up of my CFS as a result. This morning I couldn't straighten my arms because the muscles were so tight, it hurt every time I moved, I was tired and weak- I knew I was in for a rough day.

Viruses in particular tend to cause nasty problems with my CFS, so it was entirely predictable.. I think I've mentioned in the past that this is believed to be as a result of the stimulation of my immune system, which is involved in my ME/CFS, hence the problems.

I'm intending to take things really easy today in the hope that the flare will not result in a full relapse, because it would be really bad timing (not that there's ever a good time for a relapse..!). I'm dosed up on painkillers (well, no more than usual really, but I might take 1 extra tramadol, and I took cold capsules instead of paracetamol..) and am lying in bed watching catch-up TV on my phone, and listening to music when I'm wanting to rest my eyes.

Pillows are amazing things during flares, I have got myself properly propped up and vaguely comfortable- 1 thing that all sufferers should definitely invest in at the point of diagnosis, lol.

Anyway, I'm going to get back to doing nothing and riding out the pain.

Edited to add:
It's now the evening and I've never been so concerned about the prospect of my medications having to last me through until morning. My pain levels have been horrific today- there have been times when I have been literally writhing around in agony, but the more I moved, the more pain I ended up in.. Really awful. So the thought of taking my medications an hour earlier than planned worries me, not because the pain relief wouldn't be welcome right now, but just because I feel like I could cope a little longer, and I don't know what sort of state I'm going to be in when the next dose runs out in less than 6 hours time and I'm trying to wait it out until morning.. It's tough because I want to try to get an early night but at the same time, I don't want to take medication prematurely. But then I might sleep through once I'm comfortable and manage to fall asleep anyway, who knows, so it might not be an issue.

It's these little dilemmas that make living with chronic illness just that little bit tougher than it would otherwise be. Things are just constantly slightly less straightforward and there are always just a few more things to take into consideration or work around.

Friday, 6 September 2013

Update 6/9/13 doctors, prochlorperazine etc

Firstly, I'd like to start by saying that I'm feeling much brighter now than I was when I wrote my previous post, there's always ups and downs with chronic illness, and I was over-tired, simple as that. That's not to say that I was talking rubbish because I still agree with everything I said and those fears are still there, but I'm just not dwelling on them right now, there's no point.

I was at the doctors the other day. Again. I feel like I'm there too often, but I always have good reason to go, and my doctor is always clear that I should stay in touch, so I don't feel that I ever go unnecessarily. It just feels like I'm constantly back bothering him because I end up at the doctors so much more frequently than I used to. But I suppose that's one of the 'joys' of being chronically ill. Thankfully my GP is a genuinely nice guy, and we get on well even though I'm a nightmare and, although he claims otherwise, his heart must drop a little each time he sees my name on his list. This time it was just to get more prochlorperazine (for nausea) prescribed and to get it put on my repeat prescription, to which he agreed after a rather enlightening conversation.

He explained that he had never tried me on prochlorperazine because it's not something he would prescribe to a young person long-term ordinarily, because of one side effect in particular: facial spasms. He said they are like a habitual movement, but they would be noticed by the sufferer, who normally reports that the medication makes them wink. Thankfully he followed this up by saying that the effect is totally reversible IF the medication is stopped immediately, so it's just something to be vigilant for. Just thought it was worth mentioning in case it's something anyone else is thinking of trying so that you're informed!

I've also seen my maxillofacial consultant who asked quite a lot of questions about both my facial pain and my recent symptoms in general. He too said young people normally wouldn't be on prochlorperazine for prolonged periods but I think he then realised that it was non-negotiable at the moment. I'm staying on it for now if it's the only medication that helps me to eat. He has decided that, because he doesn't want to hinder my treatment by my main consultant, he is going to take a more hands-off approach, but will continue to monitor me, just less closely. He did say though that he is more than happy to see me if I'm having difficulties with the facial pain at any point and to just ring and make an appointment, so it seems ideal to me, because I don't want any more appointments than necessary, for obvious reasons, but have a review appointment back at the department in 6 months for him to see how I'm getting on. I think he feels that my care needs to be properly integrated, and particularly given that my facial pain is all part of my CFS, my CFS consultant is actually the person best placed to oversee my care. I totally agree. The medications I am likely to tolerate best are probably the medications normally better tolerated by CFS sufferers, and it's my main consultant who knows about such things. It's helpful for him to have input from the maxfax team too though, so it's not a bad thing that they've chosen to monitor me rather than discharging me.

I've got some blood tests coming up this week (even though I've already seen the vampires this week too, but never mind..) just to check on my iron and vitamin D levels because I've been on supplements for quite a while so I need to know whether my dose can be decreased yet, or whether my levels are ok at least. I also need to get back in touch with my physio now that summer is over, and am intending to speak to my dietician too, just to see if she has any further advice. I'm managing ok-ish, but my appetite is still relatively poor. I don't know whether I'll be losing weight still, but I certainly doubt I'm putting any on at this rate, and particularly given that it's about to be winter (infection-season!) I'd rather like to get quite a bit heavier just so that if, or more likely when, I get an infection I have a bit of weight in reserve (particularly just in case I relapse). A bit of extra weight would also just take the pressure off a bit in terms of eating. But obviously putting this weight on whilst my appetite is rather lacking and my nausea is randomly flaring up is seeming pretty much impossible.

I'm coping a bit better with the busy days now, although I am thoroughly exhausted and planning a couple of quiet days now to rest up. Unfortunately I feel as though I've got a cold starting, which is really worrying, as I described in this post on a previous occasion.

The weather is horrible today and I can't say it seems very sensible driving round on something electric but so far there have been no water-induced problems, other than my breaks being slightly more naff and having to slow down to go through puddles (yes that is a problem- I don't like going slow.. ;) lol)


Tuesday, 3 September 2013

Update 3/9/13 & thoughts about uni etc

First of all I’d like to thank you all for reading my blog. I’ve now had over 6,000 views which is incredible, so thank you- and sorry for wasting your time reading my moans. In real life I’m actually quite positive and upbeat- honest!

I’m sure you’re all sick of me droning on about it by now, but I’m afraid the difficulty eating/nausea battle I thought I had won is sadly not quite over just yet.. I’ve been struggling to eat again to some extent over the last few days. It’s on and off, but definitely there. It worries me because I know how bad it can get, and I really don’t want to go back there. It’s not normal to feel full before you even start your meal. Maybe it’s because I’m exhausted, I don’t know.. I’m tired, really tired. I’ve had an exhausting few days and they’re taking their toll. But I think it’s more than that. I’m really starting to wonder whether there’s something else going on.

I hate the fact that CFS confuses things so much. Nearly everything can be a symptom of CFS, so it’s impossible to know what to blame it for and what to investigate further. It’s a nightmare. I wish I had something more straight-forward that is better understood, easier to manage and has more definite symptoms rather than the symptom list pretty much being anything and everything.

My abdominal pains are also still a real problem. It’s not so much the severity; it’s the frequency at which they are occurring that’s the real problem. I can’t help but feel that it’s not normal. Not even for a CFS-sufferer.

I’m scared by it all at the moment. I’m worried how ill I’m feeling and the stresses and strains I’m still intending to put my body through over the year ahead. I question whether I’m really strong enough physically, or mentally for that matter. I’m not about to give up on my dreams- things certainly aren’t that bad just yet- but I just wonder what the future holds and whether at some point I’m going to have to make a very difficult decision.  I love my uni course, and I’m determined to get a good career in something that I really care about, and I’m still on track to do that as things stand, but it’s not easy. It’s often easy to advise other people, but looking at your own life in the same way can be difficult. I don’t know what the ideal way forward is. I don’t know whether this is just fear talking. Maybe I’m perfectly capable and just scared. I do feel that I have potential, but I also feel that my health is a huge barrier at the moment, and that’s not because I haven’t had loads of people trying really hard to make things work for me, because everyone has been absolutely amazing and gone above and beyond recently for me, which I’m incredibly grateful about.

And then I end up questioning whether I’m worth everybody’s effort. What if it doesn’t work out anyway and everyone has put all this work in for nothing? And that’s not to mention the finances involved. A lot has been invested in my education: time, effort, money, everything.  I’ll feel guilty if I don’t make it all the way through. I would feel selfish in a way. I’m carrying on because it’s what I want. There are plenty of things I could have done that would have required far less input from other people.  But I do believe everyone deserves a chance in life. Everyone should have aspirations.


I think it’s the end of a hard, exhausting day, and I am maybe over-thinking things a little. Reflection and looking at the wider picture is sometimes good, but I think maybe now is a one-day-at-a-time kind of time, and reflection might hurt more than help.