My consultant discharged me but I'm still ill?

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flyyoufools
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#1
Report Thread starter 7 years ago
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I got Glandular Fever [GF] back in October/November 2012 and had Post Viral Fatigue Syndrome [PVFS] according to my GP, in January. I got GF again in Easter and again in June. At the end of June my GP told me I had Chronic Fatigue Syndrome [CFS/ME] and referred me to an endocrinologist. I've been having repeated blood tests since June to see if there was anything they didn't know about and they found nothing. I saw my consultant at the end of last year and she was really supportive and explained to me that they have no treatment for CFS but because I'm young [first got sick at 16, now I'm 18] I have a chance of recovering naturally. She warned me about depression with the illness and told me to get in touch if I thought I had it.

I thought I had been getting better because just before Christmas I felt better than I had been. I was still brain dead most of the time, had no motivation and anything slightly physical exhausted me but it was an improvement. My January exams really screwed me over as I had three within three days and I was mentally shattered with them. I'd started to feel worse again at the beginning of January due to the stress of revision and I'm now back to how I was before Christmas. I'm struggling to sleep at night, I'm struggling to wake. If I manage to sleep at all I'm more exhausted or just as exhausted as the night before, I don't feel better at all. My skin has broken down again. I'm physically struggling to stay engaged in lessons even when I really am interested. At my mental+emotional+physical lows I can barely talk, I'll be on the verge of tears for no reason and it's a physical effort to breathe so it's no point for me to be in school. On my rare good days I still zone out after 15 minutes or so then I rely on the spontaneous bursts of adrenaline I get throughout the day.

I saw my consultant last week and it was like she was a completely different person. She wasn't really interested in what I was saying. I told her I'd recently got worse again but she didn't care. I told her I'd had a panic attack and the paramedics had given me the report because they thought it was connected but she didn't care. She told me they couldn't make me better then she dismissed me, sending me for some extra blood tests and told me I won't see her again. If anything turns up on the tests I'll see my GP. If nothing turns up then I'm completely alone to deal with this chronic illness. It's **** tbh. Now I understand why people commonly get depression with it. If I had been my healthy self I would have stood up for myself more with her but my illness means I'm basically a shell of my former self and my thoughts don't process as quickly so I didn't really understand what had happened until I was outside the hospital. I'm just worried she heard my explanation that I'd been getting better and skipped over the 'now I'm worse' bit so assumed her job was done? That or she really doesn't care.

I'm just scared because my health has affected my studies badly. I was an A* student at the beginning of AS and now I'm hoping I'll get Bs, maybe a C in English Lit. The problem is, she wasn't officially allowed to label it CFS/ME until she saw me for 6 months but she hasn't seen me that long so even though I have a Dr's note for the exam board/school/universities, it just says something about concentration issues and doesn't label it as anything 'official' that they would recognise. I'm now seeing a Homeopath privately because standard medicine has failed me at this point and apparently it works for some people with CFS/ME but I don't know if the exam board/school/universities would take a Homeopath's letter as something official seeing as it isn't mainstream?

I just don't know what to do :/
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hslt
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You're angry that an endocrinologist couldn't treat depression, panic attacks and CFS, and wouldn't keep a slot open for you despite not being able to offer any treatment?

**** as it is (I've had GF and PVFS, as have many other people) I personally would never have expected any input from anyone but my GP, and there isn't any treatment she can offer you (to my knowledge) - just as she told you. If you have worries, which you evidently do, go to your GP.

Also - no your homeopath will not be able to give you a letter that the exam board accepts. But your GP will!!!!!!
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fredscarecrow
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Your best hope is to go to your gp and wait on an official diagnosis (bear in mind this took me from the age of 14 to the age of 21) and then get referred to a specialist clinic. I went to the one in Bath. I had many different gps with varying attitudes, been for heart tests, blood tests...everything. It is possible you could have 'suspected cfs' wrotten on your medical notes for exams because it can take so long for a diagnosis. I think that's what I had at university.

Go on ME support sites, they give very good advice. As hard as it sounds, mamaging your lifestyle is the best method of getting better. You say you rely on your adrenalin bursts. Thats what we call a boom and bust cycle. Youre over stretching yourself when you have energy, making your low points even worse. You have to maintain a level amount of activity and over time this should increase.

Saying that I spent 7 years boom and busting to get through school, degree and masters. I definitely got worse in that time but I wasnt one to be told I couldnt do something...
One of the best things my clinic told me is that sometimes you have to look after yourself. ME doesnt let you live like other people. You can generally maintian 2 out of 3: self, work, others.
At school/uni I did work +others, once I finished my msc I did self+others. Now at work I do work+self and when I do others, I lose self!
There isnt enough energy for everything so focus on what is important and say no if you need to. Even if you can only focus on one its better than failing at all three.
School may have to take a back seat for now, but a year can make a huge different in ME recovery and means very little in the grand scheme of life. When I was at my worst I could barely shower. I lived away from home and food was a struggle. Whwn I crash, it can take me 15 minutes to reach the bathroom down the corridor. Less than a year of recovery and learning how to manage my lifestyle and I now work 10hour days on my feet. I still have brain fog, and I manage my pain with medication but I manage. There is a light at the end of the tunnel, but you have to work with the condition not against it. Do yoga and do meditiation but also stick with your gp to go down the official route.


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