Well I did succeed in getting my degree. I couldn’t have done it without the help and support of my family, friends, fellow students and the Prof. The day that I shuffled up to get my degree was just amazing. Despite the fact I was terrified I was going to fall there was no way I was going to miss out on this moment. Five years of hard slog and I had it, that bit of paper that justified the last 5 years of my life!
So anyway, that summer I started to get a wee bit better. I started to believe that perhaps this illness was leaving me. In fact by the end of the year I had started work as a Graduate Engineer.
Over the next two years I still wasn’t well but I was coping. I would fall asleep whenever I sat down, avoid walking too far and generally just be cautious. In that time I managed a work visit to Bath and to Berlin, I kept up my rallying although it was becoming increasingly more tiring.
Anyway, how did I get on to rallying? I do like the odd tangent I must forewarn you.
Over time I was finding work harder and harder. My brain wasn’t working as it should and my hands wouldn’t work, I spent days typing with one finger of my left hand and using the mouse with my left hand (I’m right handed). I was determined that it was just a blip and that I’d get better.
Eventually one day I had to admit defeat, I just couldn’t cope with it all and I cut down on my hours at work. My work were, and still are, very understanding. We shaped my hours to fit my health and for a while that was fine.
Ever since I left Uni I hadn’t stopped bugging the doctor. I was adamant (as was everyone close to me) that there was something wrong! I was sent to a clinical psychologist, I was put through MRI scans, a lumbar puncture, some weird test where they attached wires to my head and gave me a wee electrical shock (they assured me it was legit!), ultrasounds etc. Finally both the neurologist and rheumatologist decided upon M.E.
I remember being weirdly happy when they told me that’s what they thought it was. I know that sounds odd but FINALLY after over 2 years I had some kind of diagnosis…they weren’t just sending me off to wait it out, they actually believed me and believed in this horrible illness.
That said both of them (separately) told me that there was nothing they could do for me. You see nobody really seems to know much about this condition. They don’t know how long it lasts…some times a few years, sometimes a lifetime… They don’t know how to cure it, all you can do it “manage the symptoms”. That is one of the key things for any M.E. sufferer, it really is the only thing you can do…however I have come to hate that phrase! Those words make me cringe. I was talking to J about this the other day and I found it quite hard to explain. While I do embrace the whole “manage the symptoms” psychology and the physical aspects of it I am just thoroughly sick of hearing that phrase. It’s like the default phrase that all the docs say….. sorry there’s nothing we can actually do. You will just have to manage the symptoms. Then they look at you with this pathetic wee smile and send you home. Maybe that’s what I hate about the phrase, it epitomises the uselessness of the health professionals when it comes to this condition. Still, I live by that detestable phrase and the action of managing the symptoms helps me to get through each and every day.
So there I was, packed off with a diagnosis, some tablets to help nerve pain and told that perhaps I could try “graded exercise”…..I’ll post more about that another day but it’s fair to say I also hate that phrase!!
Plodding along on reduced hours at work was still so so hard. Some days walking from the car park to the office was enough to floor me, let alone actually switching on the computer and doing some design work. My brain wouldn’t work, my body wouldn’t cooperate and one day in 2009 I stayed off work…..I’ve not been back yet.
So there you go…..a boring, background story so you can see where I am coming from as I continue to blog about my life. I hope you’re still with me ………….