It’s taken me a week and a half to get round to writing about it as I’ve generally been making the most of feeling absolutely ecstatic and seeing all the great people in my life who are genuinely happy for me. The whole trip was pretty surreal and overwhelming; and pretty difficult. In the sense that it was just me and my mum, pretty much absolutely clueless as to what we were actually upto. I got vip treatment at heathrow because I was in a wheelchair, actually really grateful as to how good they were otherwise it would have been alot more stressful. Unfortunately I was feeling really bad by the time we got on the plane and had a fucking horrific time, fainting, blacking out, nauseous as fuck, burning up and in alot of pain, had quite a freak out and got extremely panicked, which was a fucking weird experience as I’m a sound flyer and have never had anxiety problems in my life. Anyway we made it in the end, and luckily the “hotel” picked us up from the airport and I could get straight into bed when we got there. I say “hotel” because thats not exactly what I would call it, it was more like a glorified sports centre with rooms resembling prison cells haha. Weirdest place I’ve ever been I swear, it was a volleyball center, and all these 7ft girls were there for tournaments, which we had the privilege of being able to watch from the bar/restaurant twice a day haha. The whole reason we heard about this professor in belgium was through a girl and her parents who live locally, and they recommended us staying at this place. The reason being the clinic was pretty much in the middle of nowhere and it was the closest place, and they would drive us there and back and apparently had people from all over the world coming for the same reason, so they were used to what was going down. My predictions were spot on and we couldn’t really explore or do anything exciting, we made it into the city down the road and there was fuck all to see, a really uninteresting and uninspiring place. Generally apart from actually going to the clinic I felt pretty negative about belgium, I only saw a very small part but it was really bleak and depressing, very industrial, building sites everywhere, and it seemed pretty backwards in a really creepy kinda way haha. The people were what really gave me bad vibes, I don’t wanna generalise a whole country but every person we spoke to was really abrupt and blunt, and nobody really seemed to have alot of personality. Alot of the men seemed quite sleazy, looking us up and down and weirding me out. I was seriously shocked at how people reacted to me being in a wheelchair when we went into the city. I used to get super pissed at english people and how they would stare and that but I’ve gotten used to it and it barely bothers me now, but in belgium it was on a whole other level. Pushing me through the streets 90% of people were openly staring, and yes some of it was obviously curiosity but most of it was just fucking ridiculously rude. When we stopped somewhere people wouldn’t take there gaze away, they just stood there staring till we went out of view. My mum seemed to think it was because I looked a little “different” too, dress wise yada yada, people were fucking staring me the fuck out though, glaring even, looking me up and down, some in a really intimidating way. Serious bad vibes.
Anyway it doesn’t matter that belgium people are fucking dicks and the city we stayed in was depressing time warp of bullshit, or that the hotel was like a glorified low budget sports centre with prison cells as rooms, the reason we were was to go to the clinic and see this world renowned professor that was going to potentially change my life. And he did, within five minutes of seeing me, he changed my life entirely by giving me HOPE. I literally did see him for all of 5 minutes. It was really strange, we walked in there and it was clear he was a man of few words, and had also acquired the same personality traits that most of the other Belgium’s I’d met had. He went straight to it and asked how long I’d been ill, how it started, had I been bitten by an insect, had an accident ect. He looked at my list of symptoms on the the questionnaire they’d asked me to fill out and then asked me to lie down, he went straight to my lower stomach and pressed down, hard. I screamed out in pain and cried, I was completely lost for breath, it was so fucking painful I just can’t describe. And he said “there, thats your problem”. I had a inflammatory disease that was causing my m.e. He vaguely explained what that meant, from what I can work out, its my diaphragm causing the problems, it stops my lungs from working properly and because its been left for so many years the inflammation had spread to all my organs and muscles causing the chronic pain I was in. It was so much to take in and I had so many questions to ask but he just said “I can cure it” I tried to speak and he said “within a year you will be better”. And that was that, he said he would see me in 8 weeks and I had to go and have blood taken for the tests they were going to do. Well I was fucking baffled, within 5 minutes he was able to tell me what was causing my m.e, something english doctors have never been able to tell me, nine fucking years of trying to find out and BAM we see this guy and he just knows. He knew, and he understood. It was the total fucking relief that hit me, I felt everything was going to be OKAY. I don’t think I’ve felt that since I was a small kid. No, I know I haven’t.
It’s not as simple as him treating the disease thats causing the m.e unfortunately, the disease is most likely caused by a virus. And even if it isn’t theres definitely other bad things going on and attacking my body. They took buckets of my blood and its being sent to labs all over the world to test for pages and pages of other bad shit, genetic diseases, immune diseases, organ dysfunctions, cell deficiency, infections, gnarly viruses, fucking everything. They think it’s more than likely gunna turn out I have a bunch of other stuff, but thats okay, they say that can treat it all. Maybe it turns out to be longer than a year till I’m cured, but I will be cured. I’ve never thought that would be possible. I thought I would suffer all my life. But this magic fucking genius professor is going to do it, I’m gunna be WELL. The thought of being well and healthy, of having energy, of not being in constant pain, the lists of endless symptoms I won’t have to deal with, only having to worry about getting the flu or a stomach bug, that’s a fucking INSANE concept to me. I can’t even really imagine it, but it’s going to happen, I’m going to be fucking normal. No more lying in bed, no more being in a fucking wheelchair, no more missing out and loosing friends and opportunities and having my life completely fucking destroyed by my own body. I’m gunna be in control and I’m gunna do whatever the fuck I want. I can’t describe how happy I am, and how happy I am for my parents and my boyfriend, it’s going to change all our lives forever. Only 7 weeks till I go back and get the results and start treatment and everything starts changing.
1 note, March 25, 2012