A bit about me...maybe a lot about me, we'll have to wait and see how it goes

I don't really know where to start with this. I signed up to this blog about a year ago and this is my first ever post! I thought this blog would be a good outlet for me but I didn't quite know how to start it, so I just avoided using it. But now I'm starting to think I should probably start using it. So I suppose I should probably say something about myself before I start ranting on about how crap a week I seem to be having...wouldn't that be a nice start. Well I'm now 20 and in my second year at uni, studying Human Genetics. I have now had ME for almost 8 years and I have had to work my backside off to get to where I am because I refuse to sit on my backside and use this illness as a convenient excuse to do nothing and rely on others. Although that probably hasn't been the best idea I've ever had because I've made myself more ill in the process, but I want a career. I want friends. And I want a NORMAL life, or as normal as I can get anyway. I had to drop out of school at the age of 12 (as soon as I became ill) and I had to wait years before I got a diagnosis. I was first told I had hypermobility syndrome, which perfectly explained the amount of joint pain and why my joints subluxed as much as they did. But the HMS didn't explain the extreme fatigue, or the headaches, or the nausea, or the being cold all the time, or...I could go on forever here. Anyway, I went to see a 'specialist' paediatrician who I was hoping would be able to explain what was wrong with me and why I was unable to go to a school that I loved or talk to my friends for more than a few minutes without feeling sick. But unfortunately, this so-called specialist did nothing but cause even more pain. He spent one hour of a 1.5 hour appointment asking me questions like, "Do you like school?", "Has your mother remarried?", and, "Do you see your father very often?". At the end of this farcical appointment he basically told me that I was an attention-seeking little brat who was trying to get out of going to school, and that all of my problems stemmed from the fact that I was from a single-parent family. He then referred me to a psychologist. That was just the first in a series of nightmare-ish appointments with 'specialist paediatricians'. The last one told me that my mother was not only making me ill but was ensuring that I stayed ill because she had some sort of "Munchausens Syndrome" and that I didn't actually have ME (despite the fact that I had had the diagnosis for two years). She actually said that I had chronic pain syndrome and that the only way I was ever going to get better was if I became an inpatient on a very noisy children's ward at Oswestry Orthopaedic Hospital and had two hours of vigorous hydrotherapy every morning and a minimum of three sessions of physio every day for several weeks!!! Chronic pain syndrome is a very real illness, I actually have a friend at uni who suffers from it, but I know for a fact (as does she) that chronic pain symdrome does not equal CFS, which is not the same as ME. They couldn't be any further apart!! ...I'm very sorry if anyone has had to read this last, very long paragraph. I wasn't intending to write all of that in such detail and I can't imagine it is very interesting to read, but I've never really talked about that with anyone so I guess I needed to say it...or write it, at least. Maybe this paragraph can be a bit more positive. Despite being told that I was far too ill to take any exams, I managed to take 6 GCSE's entirely from home on only a few hours of tuition per week and not only did I manage to pass them but I got straight A's and A*'s (I love being able to say that!). I then went on to take 4 A-levels, again, entirely from home and on only 2 hours of tuition per subject per week. I was the first person in the whole of Staffordshire to do this so we really had to fight, despite the fact that it was my legal right to do it, and if it wasn't for my mum backing me up on every step and fighting for me when I wasn't well enough to do it, I don't think I would have got half as far as I did. I studied Maths, Biology, Chemistry and Art but I only managed to get AABb in the end, which wasn't as well as I was aiming for. I wanted AAAb at the very least, but I guess I can't win every fight :) I wanted to use my grades to get into university to study medicine, which has been my dream since I was 9 years old but my grades weren't high enough and I don't think that I am currently well enough to actually be able to cope with the course. So I am currently studying Human Genetics because it is the next best thing and it will give me a good career. I am aiming to complete my MSci HumGen and then go onto study for a counselling diploma, in the hope of becoming a genetic counsellor. This would mean approx 50% lab work but it would also mean that I still get 50% patient contact. I already have a couple of counselling courses under my belt, which I took during my gap year, and I do voluntary work on a support/helpline when I am at home and well enough so I know that it is something that I would enjoy and that would probably give me job satisfaction. But it is stil not what I wanted. It has been extremely difficult and painful having to let go of the one thing that has kept me going over the last few years, the one thing that I was aiming (and fighting) for, but I have had to try to come to terms with it. The worst part is that I know I'm not the most academic of people and that I would have to work extremely hard to keep up, I know that I would struggle massively with the practical side of the course (I may not even be able to complete some parts because of me having to use a wheelchair all the time), and I know that my short-term memory is now so appauling that I may not be able to progress past the first year, but I do know that I would make a bloody good doctor! I know only too well what a bad doctor is like because I've seen enough to last me a lifetime, and I know that a good doctor isn't just someone who has learnt a set of medical textbooks inside-out and back-to-front. A good doctor is someone who has understanding and empathy to back up their extensive knowledge, as well as someone who knows how to LISTEN!! Despite all of this, I am now studying at one of the best universities in the UK (and the world), where I am surrounded by people who don't see my illness or my electric wheelchair. They see me and, for some strange reason, they see potential in me. They know how driven and determined I am, so they are happy to help wherever and however they can to enable me to graduate with a damn good degree and go on to get a career for myself. This illness has taken so much away from me, that I and they, refuse to allow it to take anything else. I have so much support here, which I really didn't expect especially when so many other uni's told me that I had to "know my limits" - which is code for go back to bed at home and watch crappy daytime TV, so your brain can turn to mush. My first year made me so ill that I had to go home on numerous occasions and even whilst I was at uni I had to have help with things as simple as getting in and out of the bath and blow-drying my hair at times, and for half of the year I was too ill to sit up and eat so I didn't really make the most of the fact that I am staying in catered halls of residence. This vile, cruel illness has taken far too much away from me; I have lost my friends, my social life, my chance of being a doctor, and all of my teenage years, which is the one thing that I will never be able to get back. I am not prepared to let it take this degree from me as well. I am at university to study and that is what I am doing, regardless about how ill it makes me. Some people might not agree with what I am doing but it is my choice; something that was robbed of me for so many years. I am doing something for myself and screw what people in the medical profession say, and even what certain members of my own family have said, I am going to prove you all wrong...just as I have done for the last 8 years (with an enormous amount of love, help and support from my amazing mum). I am not a lazy, good-for-nothing, attention seeking brat, as many have said, who can't be arsed to get off her backside. I am a fiercely independent, intelligent young woman who will have a career and who will not give up just because it's what other people expect. And I will become a doctor one day; it might take me a lot longer than most, but I will do it. I have to keep positive and keep pushing forward, no matter how much pain I am in or how little sleep I have had, and even when I can't even sit up because of the exhaustion. If anybody reads this and still believes that ME is "all in the mind" and is the illness of people "who sit on their backsides all day and can't be arsed to do anything" (as was famously said in the TV series 'Benidorm'), then I hope you will read any further posts from me because you will very quickly realise that this illness is nothing of the sort. It is a very real, extremely debilitating neurological illness, which can destroy lives. There are many other people like me who try to lead normal lives and try to fight this illness every step of the way, so please don't judge us because you believe the false stereotype and because you remember the days when it was called "yuppie flu", those times are long gone... Oh dear, I think I may need to stop typing now. This was supposed to be a short post so I should probably leave the rest of my rant for another time. I guess I had a lot more to get off my chest than I first thought. Maybe this whole blog/diary thing might actually be a good thing? Suppose I'll just have to wait and see. I think this post may have been quite negative but I promise not all of them will be like this, there are at least some positive things in my life! Anybody reading this who has ME or a similar condition, I hope you're all AWAP! x