Monday, 20 May 2013

Where it began...

I can't begin to knowing, but now I know it's going strong. Sorry I couldn't resist. Could you? It's okay there is nothing wrong with a bit of Neil Diamond, he's a legend. But getting back on track...

So where did it all begin for me?


I was first diagnosed with M.E/ CFS about 2 years ago. I was having the time of my life, doing a stage management masters degree and was enjoying a good social life. It was around Easter that I started experiencing chronic pains in my abdomen, I know this as I was oooing at Kate Middleton's wedding dress and aaahhhing in pain. I had to take a month off college due to the pain limiting my movement. At first I didn't really think much of it as I'd experienced similar symptoms in the past. However I was admitted to hospital 6 times in the space of that month, each time with suspected appendicitis, I was dosed up on morphine but all the tests came back clear. Still in pain but maintaining it with a tens machine and knowing nothing serious was going on  (basically I wasn't going to explode) I returned to college and got stuck in to stage managing a production. I was working long hours and still in a lot of pain but I kept ploughing on as I was enjoying myself and proud of being a stagemanager.

Then one day my legs went from under me walking down the stairs and I was whisked to A+E with a nasty sprained ankle. Funnily I was still looking over some notes in the waiting room, in between playing "Why are they here?" I found it quite funny that out of all the people it could have happenned to it had to me.

So there I am after the weekend with my foot up, hoping along in college still laughing when the next day I wake up with a sore on my cheek and significant swelling under my eye. I was starting to think that things really do come in threes. The doctor put me on antibiotics but the next day I was well and truly walking around looking like Quasimodo with my limp and swollen eye. It's okay you can laugh, I do. I started to feel really sick and get headaches so I headed back to my favourite place (droll) A+E. Turns out I was right to, I had to spend the whole weekend hooked up to a drip because they were worried about the infection spreading any higher or into my brain. I also had a scan on my face, with a very strange looking machine. It felt a bit like being inside iron man's helmet. It did feel rather silly being in hospital with a sore face, especially when there was a family sobbing over a dead lady in the next room. On a personal level it was annoying when there was lots to do. I remember waiting for a bed to become available and having to contact the director because the fight choreographer was stuck on the motorway.It was definitely getting to the point where I was losing my humour and couldn't afford to be 'out of action.'

After that it's all a bit of a blur. I remember trying to get as much done as possible at college and feeling quite drained from the antibiotics. During this time I also had to come back home for an MRI scan of my small bowel, from the six hospital admissions I'd had previously and became quite unwell with the medication they gave me for it. Shortly after my mum also became ill with a kidney infection that got into her bloodstream and was rushed to the hospital. I hated being away from her, we are really close but there was no way I could get back home until the weekend. I felt as though I couldn't even ask for the time off with the amount of  illnesses I'd had and it was definitely not a good time to leave the team. This just made me seek solace in my work even more, so that I did not have to be alone and plagued by nasty thoughts. I would go into college for 8.30am and leave at 10pm, so that I could only be in my flat to shower and sleep. My lunch breaks were usually spent at my desk or busying myself in town looking for a prom dress. Although looking back I'm not sure how productive this was. At the time however it was all I could do to ensure I wouldn't get an anxiety attack, as I'd suffer badly from them in the past and my resolve was already low from poor physical health.

When the weekend finally arrived I managed to get home. Mum was home but still tired. Personally I was shattered too (not surprising really) and I started to having mild panic attacks. It was like my body was giving in to what I had been trying to suppress all week or possibly longer. When I went to go back I had a full on panic attack at the train station and had to go straight to the doctors. I felt like such a failure, I needed to get back, I wanted to go back but my body and mind were screaming for rest. Of course at the time I didn't know that's what I needed, back then I just thought "what on earth is wrong with me? I want this, so why is my body not cooperating?" I definitely wasn't seeing the funny side anymore.

After some medicated sleep and waking up to 'concerned' texts and phone calls about my whereabouts I knew I had to make a big decision. My body was telling me it needed rest and had given me lots of signs in the stomach pains, falling down the stairs, the infection and finally the panic attacks but I kept pushing through till my mind told it to shut down. I knew what was ahead of me in the next couple of weeks with the show and then going straight onto a placement. There was lots of long hours and physically demanding work to be done. Realistically I knew I wasn't up to it. No matter how much I'd prepared or absolutely wanted to be. So I decided to ask for leave. It was the right decision I know and the only one really but it broke my heart and I was crying out whilst collecting all my stuff from college and handing over the paperwork.

So by now you'd have thought that that was that, er not quite. The following weekend it was the Summer ball that I mentioned, which I really wanted to attend as it was a chance to goodbye to everyone before they went off on their placements. I had had a lot of rest that week and felt reasonably better, so I saw no problem in going back. It was a great night. However the following day I was exhausted again and experienced a very big panic attack. My body was screaming at me to do something, that I wasn't safe and my thoughts turned dark, which scared me even more. I was due to go home the following day but I knew that I had to get home 'to some kind of safety' straight away. I got on the next train and was desperately ringing everyone to see if they could pick me up. Why is it that when you desperately need to do something it feels like everything is working against you? I was phoning up my family for a lift from the station but everyone was either out or had had a drink, plus the trains were only running part of the way. Luckily my brother was free, I'm just surprised he could hear me through all my blubbering. When I got off the train I just managed to get into my brothers car before falling asleep.

I was asleep for near enough three days straight, only managing to keep my eyes open for a short time. Mainly when I was hungry, although I would normally take a few bites and then fall asleep with food all down my front. I'm still waiting for the photos to appear on facebook. So I needed help eating and going to the bathroom. As well as feeling weak my muscles ached and my head throbbed. The doctor came out and I barely registered he was there, he sent me straight to hospital in an ambulance. Needless to say I didn't see much of the ambulance but I was told afterwards that the paramedic took a shining to my Randy Orton calender.

At first they were concerned about meningitis but all the tests came back clear. They were trying to get me to open my eyes and do lots of exercises like following the doctors finger and touching their finger then my nose  but my eyes just wouldn't stay open. Well that was the reason I was there.  When the blood tests and x-rays came back clear the doctors became obsessed with telling me that I'd drank too much or had taken drugs at the ball yet I hadn't even had a drink and they could see my bloods were clear. I very rarely drink, no not because I'm boring but because it plays havoc with my stomach and it's havoc enough already, so I've found that it simply isn't worth it. After reading through my notes and seeing that I had a history of depression they became even more intent on this 'line of questioning.' I even had a psychologist shout across the ward whether I was suicidal; no I was not and I'm not deaf either. I was really weak and felt hounded; of course I did feel a bit depressed I'd just had to call time on my masters, if I didn't feel depressed about that then something would be wrong. I was the happiest I'd been in a long time, it was just my general health that was letting me down. What's more I had come into hospital to try and get some answers but I was just being treated like it was my fault and there was a woman in the next bed who shouted all the time and kept pooing herself, loudly. Once I'd explained this and they were happy with my psychic evaluation and test results they discharged me; telling me to rest and recharge my batteries and hopefully things will improve.

Well here I am two years later and  I'm still very much in the grips of the condition. In no way is it all bad but it is definitely still very prevalent. The only thing I can say is that I have a better understanding of the condition and a deeper self awareness. What's important to understand is that I'm not saying if I hadn't have had chronic abdominal pain, fell down the stairs or had an infection that I wouldn't have M.E. I think it was a combination of those things as well as the added pressure I put on myself at college and not letting myself rest and recover properly. I was living my dream and I wanted to keep it. It's no good trying to pin it on one thing or wishing I'd have done things differently, because I probably wouldn't have; that's just who I am and being who you are is the best thing that you can be.

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