written by Laura.
Wow, M.E. awareness week really got off to a flying start yesterday; We got more than 6x the amount of views we get on a good day! Hmmm... i think you're all trying to tell me something. Anyway today is in fact M.E. awareness day so i am taking part in Sally's May 12 Blog Bomb, exciting right? Of course, me being me, i wanted to put my own little spin on it by writing about my illness in the form of a letter to all you other poorlies out there. Stop yabbing and get on with it.
My name's Laura and i have M.E. (jokes, we're not at an AA meeting). I've had this stupid illness for nearly 5 years now and let me tell you, it sucks, though if you're a spoonie you already know that. So, i shall tell you my M.E. journey, how it started and how it's progressed/changed.
I was at the end of year 10 at school when i got knocked out by this awful virus, basically, i was in and out of hospital for a couple of weeks with it doing things to my blood and organs yet they were never able to work out what it was. So, i gradually felt a bit better and thought things were going back to normal. But, it got to September 2009 (2 months after the virus) and i was getting very dizzy, sometimes even fainting. This was all around my 16th Birthday. My 16th Birthday was in fact when me and Michael became an item after years of being very close friends. Great timing on M.E.'s part ehh? I was alright for a week after my birthday, but then things started to get worse, so much so that i couldn't go to school (in the last year of my GCSE's, lucky i was such a swot the year before!). Luckily, i already had a hospital appointment with a new lovely Doctor who was following up after my virus who had no clue what was going on with me. So, there came the tests, i won't bore you with the specifics as i'm sure most of you have gone through the same, but basically i had an ultrasound, barium mill, CT scan (i think), bone check (weren't sure if it could be cancer, scared the crap out of me), a million blood tests (though i'd already had thousands of those throughout my childhood), you know the drill.
This is when they said there was 'nothing' wrong with me. Hmmmm. Apart from the Doc who was treating me, who was also the sweetest Doc i've ever had. He then tells me it's M.E. How many of us actually have any idea what M.E. is before we get told we have it? This is where things get a little messy. He has to send me to a pediatrician who knows about M.E., he just doesn't tell me this new Doctor's going to be an utter A-hole. I'm sure at least half of you out there have had to deal with that right? You look at them and think 'how on earth are you a specialist in M.E.?
Meanwhile, i'm missing a lot of school, though Michael would come to see me almost every night straight after school, sometimes bringing our friends. But, in November, after half term, i decided to go back to school for my most important lessons. Mr Andrews (a life saver, if ever there was one) organised it all for me so that i could choose when i came to and from school. So, i chose to try and go in around lunch breaks just so i could socialize a bit (and see my man of course) and always in my new wheelchair. Though, it wasn't exactly new, the hospital wouldn't give me one but luckily my Pamp (grandad) works for Dial-a-ride and they had a spare wheelchair they said i could have. Now, not all my teachers were supportive, if you had M.E. whilst at school i'm sure you know what i mean. But, i gradually dragged myself through school and managed to get 5 A's, 4 B's and a C! I don't mean to gloat but 'bloody hell!', and with very little help.
This is when i had to decide where to go next. So, i chose the college closest to my house (Colin Firth went there, don't ya know) and we started organising things. Around this time, i got an occupational therapist, they're bloody hard to get hold of too! We went to all these meetings with the college to set things up to be manageable for me, i can't say they actually payed any attention though. I was meant to have a reduced time table, i had the exact same timetable as one of our friends (who was fully well might i add). I was meant to have all my lessons grouped together so i didn't have to be in college all day, oh no, they spread my lessons out as far as they possibly could. My teachers were meant to give me work before everyone else so i had more time, they ended up giving it to me later, yes later, than everybody else. College did not go well for me. I was using a walking stick to get around at college but i was gradually getting more and more wiped out. It didn't help that the doors weighed a ton and nobody helped me, and that i got thrown about like a leaf in the wind. This meant halfway through my first year i couldn't attend anymore, i just went in for exams and the teachers sent me work home. I didn't do well in my exams, i took 3 subjects, i got a U in 2 and then an A in the other (which i'm very proud of).
This was half way 2011 and Michael was starting to move in with me. He'd just got an apprenticeship with an I.T company thingy and boy, he looked good in a suit ;). I wasn't doing too well on the other hand. Around my 18th Birthday (there goes M.E.'s timing again) i got a very nasty bug which resulted in my body eating itself, delish. So, i ended up bedbound for the first time with my Nan having to look after me while Mum was at work. I started to feel a little better but i had to quit college (not a choice taken lightly, i tell you) and was still house bound. I was a little depressed around here, and i know i'm not the only one who's felt that, it sucks. And this is how it stayed until the end of 2012, a very long time. In this time, i could get out of the house regularly and i could leave my room, we even went on holiday with Michael's dad (spoonie's on holiday? hard work).
Just let me tell you something quick, Christmas hates me. Yup, sad but true. Huge argument, tick. Someone ill, tick. Overdone food, tick. Christmas 2012 went the same. I woke up with a ridiculous belly ache and couldn't eat my roast dinner (though i sure did find room for Christmas pudding). This poorliness carried on until the end of January, when we decided it would be best if Michael stopped looking for work and became my carer. What girl wouldn't want ot be waited on hand and foot? Me, and most of you spoonies out there, i know. I was bedbound and couldn't do much for myself, after a few months of this is when i started this here blog. And, boy oh boy, it has been a life saver.
Basically, from Christmas 2012 i have been completely bedbound, only leaving the house when absolutely necessary. Michael now has to help me to the toilet, wash me, dress me, brush my teeth, sometimes he has to feed me, etc, you get the gist. The one thing i can do myself is our blog. And we write this blog for you. Soppy, but true. I haven't had any help apart from the stupid pediatrician for the first 6 months of my illness and a useless OT who didn't actually get me that much. I now get progressively worse every single day; I'm able to do less and less, Michael has to do more and more. My stomach will take less and less food but that's put down to the anorexia i've suffered from for 10 years, i know my body. I'm scared, terrified even, of what's happening to me. Some days I can't even breath. I know what it's like to feel alone, to have no-one that understands what we're going through. God, i'd never even spoken to someone else with M.E. until i started this blog, and now i even made a best friend through it. Which is why i'm here for you, if you need to talk here's my email: email@example.com if you need a friend anytime i'm on Twitter
So, that's my letter done. I hope it's okay and i hope it reaches as many people as possible. Personally, i'm off to read others May 12 Blog Bomb which you can do by searching the hashtag '#May12BlogBomb'. I hope you're all as well as can be and raising awareness as much to your ability.