…..and so it goes on….

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.

I remember one day we were doing a single venue event and my driver (ooh I sound posh, my rally driver, the guy I navigated for, not my chauffeur) pulled out two bikes and suggested we take a cycle round the track to have a recee. Yup sure I said and jumped on the bike. By the end of the first straight my legs were jelly but there was no way on this earth I was going to show my weakness, so what did I do? Well when we got to every corner I stopped and “wrote down some notes”. I didn’t want him to think that I was unfit let alone ill so I tried my hardest to cover it all up. Looking back he must have wondered what I was up to. It’s not like I couldn’t have told him about it, I was really close to him but I didn’t want the guys to think of me as weak so I just plodded on.

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 ………….

From the beginning…

I’m sitting here looking at a brand new, empty blog. How to start? What to say? Well I guess I should start somewhere around the beginning. Oh but how to identify the beginning?

Flash back ten years and you will find me juggling all the loves in my life. I’d be studying at Uni…in fact that wasn’t a love at all but it was something that had to be done…. sitting in the navigator’s seat of a rally car shouting commands and generally bossing folk about (I’m pretty good at that)… hanging out with friends, working on the croft with my Dad…. in truth I didn’t stop. I had an active life. I was always busy.

Flash forward five years and I was in my final year at University. I had always wanted to be an engineer so being within 2 semesters of a Masters in Electrical & Mechanical engineering I was close to achieving that childhood dream.

I met boyfriend (now husband, who will just be referred to as “J” in this blog) in the May of 2006 and was having a great time getting to know him, hanging out with him and his mates and generally falling in love. Corny as it sounds I knew that he was special when I met him….. since then he’s exceeded all previously recorded levels of specialness…. he’s my rock.

Anyway back to the story. In Nov 2006 I started to feel very unwell. I had terrible headaches (like an elephant sitting on my head), a sore neck and was so tired I just slept all the time. I got myself off to the doctors and was told it was just a virus. A few weeks later I returned to be told it was probably viral meningitis and not to worry it would just take a while to go.

Great, the word meningitis in itself terrified me but they assured me that it wasn’t serious. That was the start of it….the start of my illness and the start of many, many frustrating visits to the doctor.

After a few months it became particularly apparent that I wasn’t getting any better. I had somehow sat my January exams (to this day I don’t know how) and was into my final semester of university, but things were getting worse. I was struggling to walk, even a short walk to the end of the road was too much for me. However I am a stupidly stubborn individual so I kept trying to go to University and pretend that everything was normal. In hindsight this probably wasn’t the best idea but after five years of uni there was no way I was letting that degree slip through my fingers.

Well needless to say I couldn’t keep this up. I ended up virtually moving in with J and his flatmates (who were absolutely amazing, thank you Stevo & Fettes) as I couldn’t cope with the stairs to my own flat…or with being by myself. It was then I found myself constantly in bed, I couldn’t lift my head off the pillow. On the rare occasion I did it was to eat before going back to sleep.

The doctors decided that hmm perhaps there was more going on than just this virus and after many blood tests I was told I was low in folic acid and that was probably the cause. So I armed myself with folic acid and set about rectifying the situation…….you guessed it, no change!

There was a fear that I may have MS. You see my Mum and my aunt both suffer from this horrible, cruel disease and so I was referred to the hospital. Well I wont bore you with all the details but after all the relevant tests they said that no, thank goodness, I didn’t have MS, but they didn’t know what it was. However they suspected that it was in my head and would refer me to a clinical psychologist.

I’m not quite sure it’s possible to put into words how angry I was….and still am… about that! IN MY HEAD? Are you effing joking?! I can’t walk! I struggle to move my arms, I have weird feelings in all my limbs, hellish headaches, soreness throughout my body, not to forget sleeping all the time and you are telling me that it’s all in my head?

Now I do appreciate that there is a rather large link between body and mind, I’m not denying it. However to be told that this illness was psychological was quite frankly heartbreaking. I knew it wasn’t, why wouldn’t the doctors realise that?

I can still remember that smug bitch’s face as she told me it was probably a reaction to my Mum becoming worse with her MS and that by talking to a psychologist it would be resolved.

I actually wish now I had punched her in the face..not that I could have physically managed it but I swear if I ever see that woman again the least I’ll do is accidentally trip her up with my stick!

So there I was, living in my boyfriend’s bedroom, unable to do anything and knowing that I HAD to finish my degree.

That was when the Prof. came to my rescue. I always call him the Godfather because whatever you asked him for, it was done just like that! He was head of department and a lovely man. I had several meetings with him and it was decided that if I could contribute towards my group project I wouldn’t have to sit my final exams as I already had enough credits to pass.

It was as though the massive elephant that sat on my head has just farted. My head felt lighter….maybe this was all going to be ok?