M.E. diary

How did i get here …. ?

I was first diagnosed with M.E. in 1993.

I remember taking my children to the park and being unable to get off the bench I was sitting on – I literally couldn’t move. Luckily a neighbour had passed earlier and on her way home noticed that we were still there (my toddler was still happily playing and the baby was asleep in his pram). I couldn’t speak but managed to beckon her over. She rang my husband at work then sat with me until he came to drive us all the 500 yds home.  He went straight out and spent all our money on a mobile phone. It was a brick and really embarrassing because no one else had one. I hated looking like I was showing off but he wanted me to be safe if I went out. It was pretty pointless from his point of view because I would have to look for a doorway or a quite side street if he rang to check I was ok and he would panic and imagine me lying in a gutter because id take so long to answer. But it was also freedom for me because I was allowed out even if I did have to be accompanied by humiliation! My husband was in the Navy and they were amazing. They were so far ahead of their time in understanding M.E. and realising what a serious and ‘real’ illness it is and how important my husbands physical support was for my, and our childrens, health and happiness.

My M.E.  got so bad there was talk of a wheel chair – luckily that never happened and I recovered enough to get out and about again. I had a hysterectomy and for some reason the second I came round (and my husband had persuaded them that i was quite intuitive about what was good or bad for my body and had talked the nurses into taking my word for it that the Morphine drip was making me feel really ill each time I pressed the button and was not helping at all) I felt better and more lively than I had felt for years. So well that the hospital had never seen anyone recover so fast from the operation. Ive since learnt that this is quite a common reaction with ME suffers – something to do with hormone levels being normalised synthetically after the operation.  As im writing this ive just remembered a wonderful woman I met there. My brain wont allow me to remember her name at the moment but for some reason we had an instant ‘love’ for each other. I realised in hindsight that she knew she was dying but she was just so strong and beautiful. She had come in to have a melon sized tumour removed from her stomach. I never saw her after I left hospital because she died shortly afterwards but I often think of her and our strange connection to each other. Im not sure why she had such a powerful effect on me but still feel a strong connection to her and can see her as clearly now as if it was yesterday. She gave me something – it might just have been  a stronger self image but its stayed with me – she made me feel good about myself. She was Mayoress at the time but i didnt know that until later.

In those days no one knew anything about ME and I wasn’t told that I may relapse so I just presumed that after a two year gradual recovery period it had gone. I must have got used to the residual symptoms and started to think that how I felt was normal. Its crazy what your mind and body will get used to. What I now realise is that for all those years when my skin felt tender to the touch, when even my bones hurt, the overwhelming dizzying exhausting tiredness, the not being able to get slightly cold because it would make me feel really ill etc etc was still ME and not Flu (that never came to anything) or weird viruses and that Beechams Powders weren’t the miracle cure all I thought they were – it was the fact that id taken myself to bed and stayed there a day or two resting that made me feel better. Until October 2009 it never got as bad as 1993 so I just never realised.  I can hear myself saying over and over again “I feel so tired im starting to feel like I did when I had M.E.” and then id go to bed.

I remember going to various Doctors and saying “ I feel so tired all the time, the only way I can describe it is its exactly how I felt when I had Glandular Fever or ME.” They just asked what exercise I did and told me that if ‘one’ didn’t do enough exercise ‘one’ would feel tired. Plus ridiculous advice on eating 5 a day – if my mum gave me nothing else but good nutrition (and Clarkes shoes) she did a great job. I have always eaten healthily thanks to her – she was way ahead of her time nutrition wise –  advocating brown bread and forcing us to eat fruit every day.  Since i left home ive always eaten loads of fresh fruit and vegetables with very little processed foods and as much organic food as i could afford. I haven’t drunk tea or coffee since i was 16 because i thought caffeine made me feel sick (it was milk). Ive just written that and don’t know whether to cry or scream because id been asking for help for years and no one was listening. If my doctor had just heard what I was saying I wouldn’t have had to go through all the things that happened as a result of having undiagnosed ME and  i wouldn’t have developed all the Helpful and Unhelpful strategies. Ive capitalised them because for me they are the most significant factor of ME, at this moment in time, and I want to go into more detail about them later somewhere in this blog.

I’ve learnt to manage myself rather than the ME but I don’t think my way was very successful as I’ve just been living life normally then taking to my bed for a couple of days, sometimes weeks, to recover when I can’t go on any more. When I say living life as normal it’s been anything but. As humans we are so adaptable and I found a way of pretending to myself that all was well and that I was living life.  I tried not to do anything on Sunday or Monday, id lie on the settee and made it a rule not to go out of the house.  This quickly evolved into quality time with the children which was a lovely side product.  I’d spend time just sitting, talking, laughing, watching videos or TV cuddled up on the settee with them on both evenings – it was our weekly catch up.

I got used to making excuses about not going out if I wasn’t up to it – I’ve worked from home since 2000 so I had that to hide behind. I now realise that things ive talked myself into as being normal are in fact a crazy way of covering up ME symptoms from family and friends because i won’t give in and don’t want anyone to think I’m no fun or lazy.

In October 2009 it flared up again. I had been going to the gym regularly, in fact i was really active all my life until about 4 years before. My working life got so hectic I didn’t have any time left. I was still exercising occasionally by walking and more regularly by riding my road legal quad bike which was vigorous exercise but nothing like I should have been doing. I suspect that the drop in my fitness level coupled with taking a pole dancing class is what probably caused the M.E. to flare up again. I only took 4 classes, one a week for 4 weeks, but after each one I felt more and more ill. I didn’t ache as I thought I would after the first class so I must have been pretty fit still from the quad biking. The pole dancing class was one on one and very intensive exercise involving a lot of core strength which I didn’t really have because I hadn’t gone to the gym for so long. After the 3rd and 4th classes I couldn’t drive for about 20 minutes and had to sit in the car shaking and wait to get some strength back. I thought I had some sort of virus and went to my doctors because I was getting some funny heart palpitations and feeling breathless and exhausted if I walked upstairs. Luckily my bedroom is en suite as after a month or so I ended up having to crawl to the loo. I stayed in bed for 3 weeks and couldn’t get out. I literally thought I was dying but was too ill to see a doctor and didn’t want to make a fuss. My long term partner had ended the relationship when all this started and I was also very cut up about that which didn’t help. My son made me food but I wasn’t really hungry so if he wasn’t here it didnt really matter.

Over the years friends have challenged me about being depressed, agro phobic and many other things but I wasn’t any of them so could easily prove I was ok. “But I do go out, I met you all for lunch on Cathys birthday!” “I’m not depressed, I don’t cry, I eat, im not stressed!” Long term friends just know that they have to come to me, luckily all my friends like an excuse to get out of their houses so it worked quite well. Like me they got used to how I was and how our relationships worked because it just became ‘normal’ to all of us.

I decided to see a different Doctor in my practise and she has been amazing but it’s taken a while (over a year) to get referred to Dorset M.E. clinic  as I’ve also had other problems that had to be investigated before they would accept me. In October 2010 I was put on a 12 week waiting list so I should be close to an appointment now. I just need to find a normal way of managing ME which will actually be managing it rather than my mad covering up system.

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