Sunday 27 January 2013


Hi everyone.

Apologies for me completely abandoning my blog for a while. I am not very disciplined when it comes to doing things on a regular basis haha. I thought I'd better add more detail (may end up being rants however!) about different aspects of my illness 'journey' so to speak.

I'm not sure what to think of my newest doctor. I've technically had him for at least 6 months now, although I do not see him very often as he prefers telephone consultations (and I can be a bit shy with phoning sometimes. I don't like not being able to see a person's reaction to what I say and the more I think about it, the less I can concentrate on what I'm saying; which doesn't help the mind fog much).

When I first went to see him, I pretty much had the diagnosis of M.E/CFS. Well, most of the doctors I'd seen had said that's probably what I have. They'd given me paperwork but no follow ups after my fluctuating blood test results. As soon as the results are normal (or not too abnormal) it's like they think I'm fine so don't need further tests/treatment/consultation etc. I had written down all my symptoms with annotations to say which were the worst, which were most often and so on. This doctor didn't seem to like the fact I'd written it all down and even scoffed at the M.E/CFS suggestion. He said that doctors didn't like the term M.E, preferred to call it CFS and he believed that the diagnosis was just an excuse doctors made when they couldn't find anything else! He's tried me on some diets, tested me for Lupus and so far this gluten free diet is doing naff all. I feel more tired, more achy and weaker. I really don't think it's gluten intolerance. What should I do?

I just don't know what to think about him to be honest. He's the senior practitioner at my surgery so should be very clued up on illnesses (including invisible illnesses) right? I don't like his attitude towards the condition though, and I don't like that he prefers to use the term Chronic Fatigue Syndrome. It plays down the illness so so much. It makes it sound as if the sufferer is absolutely fine apart from this fatigue they get quite often. The term completely ignores the vast amount of other symptoms that make the illness so damn debilitating (chronic pain, weakness, dizziness in some cases, mind fog amongst many others). I probably should've asked the doctor why he prefers this term (I'm saying 'term too much) over the much more scientific and, let's say, legitimate name Myalgic Encephalomyelitis. At least that name gives more of an idea of the symptoms.

It could turn out that I have something completely different to m.e. but after seeing so many doctors and having the majority of them saying m.e., this is all I can go on. It'd just be nice to at least have some consistency. I'm having such a hard time looking for work at the moment, trying to impress potential employers and convince them that, despite everything, I AM reliable and able to learn things quickly. Whenever it gets to the part of the application form that asks about disabilities/health conditions I never know what to put and end up saying I have nothing, in the hopes that my symptoms will not get in the way of the job I would have to do. For one, I don't 'technically' have a diagnosis. In that, it hasn't been written in my notes (thanks doc...). For another, despite the disability discrimination act, from my experiences, employers do treat you differently when you need sick days/do things slower because everything hurts so much/can't make some meetings because you feel too ill and being in a room you can't leave (without being rude) exacerbates symptoms.

I actually feel as if my symptoms are getting worse at the moment and I get some awful mood swings as well. This is a stressful time in my life though. I have been unemployed for 4 months now and live with my partner, who works full time. He brings in practically minimum wage (give 2 or 3p). Because he works full time I'm unable to qualify for ANY financial support whatsoever. So technically I have no income. Not even a discount from anything because I don't qualify for jobseekers. I want to do more to look for jobs but I don't feel well enough to go door to door so all I can do is give out CVs in town, apply via post and apply online. Apart from help from my partner and my family, with paying bills, I live off the money I earn from paid surveys. This is hardly a thing but it helps when I need a few pounds extra to pay pet insurance and phone bill. I really shouldn't have taken on a 2 year phone contract but at the time I had a job and most things seemed fairly optimistic. I hate the stigma that is attached to benefit claimants. The general consensus seems to be that they're all scroungers that the tabloids are waiting to catch out. In the majority of cases, they aren't though. They are people in really awful situations who need this extra help to survive. They should not be blamed for the odd time that they can go for a nice meal out or even a cheap holiday (if finances even stretch that far!), why should they have to stay at home staring at 4 walls all day, getting more and more stressed, depressed and ill as a result?

I really am rambling now, and ranting (well I did warn you!). I do feel guilty for ranting because I know of people who are literally bedbound because of illnesses such as m.e. I am so thankful I am not that bad. Practically housebound (unless someone is with me) is my situation for now. I can't remember the last time I walked out the house and got on a bus into town on my own, and I really can't remember the last time I managed it without being absolutely bursting for the loo! This stupid overactive bladder has made me fear taking a bus now. On a good day I can take a taxi but I will still have to go to the toilet just before it arrives. At least in a taxi, I can make the man wait whilst I pop to a nearby toilet if it's really urgent. If I'm on a bus I just have to hold it and hope I don't look too crazy and fidgety.

I think I'll leave this post as it is for now as I'm getting a bit worked up mentally. I can barely concentrate on reading back what I've written so I do apologise if this is a little jumbled. If anyone has any advice at all as to what I can say to the doctor next, whether I should change doctors, should I look up a different illness even? I would appreciate it so much. Mind you, I really appreciate anyone taking the time to read this at all! I do want to say a massive thankyou to those that have taken the time though.

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