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..

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