Edinburgh M.E. Self help Group

I am 42 and I live in the Scottish Borders. I am originally from the North-East of England. I had a normal, happy well-loved childhood with the best parents and brother in the world! I am a Northumbrian through and through. I like to think I am open hearted, kind, a good listener, thoughtful, loving, friendly and a positive person. On the bad side I am a worrier, quick tempered, slightly moody and stubborn. I am married to my first boyfriend. I met him when I was 15 and he was 18 on leave from the Royal Navy. That was back in the 80’s and I remember it all with such vivid fondness. Those were the happiest days of my life, so carefree and fun and I was in love and we knew we were going to be together forever!

I was 18 and my boyfriend and I had been together 3 years when he had his accident. He was knocked from his motorcycle from behind on the A1 whilst coming to pick me up from my last day of work as a nursing assistant. I arrived in time to see the blue lights and the A1 closed. The ambulance men wouldn’t let me come in with them, but said he was Ok. I managed to get a lift home to my parents and they raced me up to the Newcastle General where he had been taken. Over that night, his and my whole family were there, in that horrible waiting room…the Doctor came and told his Mam something in private and then she came back and broke the news to us… he was paralysed… he would never walk again and he was desperately ill… my world fell apart.

I remember being there with him when they thought he wouldn’t last the night, I remember lying in my mother’s arms at home waiting for the doorbell or the phone to ring with someone to tell us the worst news… Thankfully it never came… he spent three weeks in intensive care and then was transferred to Hexham General Spinal Unit, where he spent a further ten months. I put my whole being into helping him regain the person he had been before the accident. I started my nurse training, in the back of my mind I knew then that it might be something I would need to care for him also, and qualified as an RGN.

We got married (The happiest day of my entire life). We bought a house (he got compensation) and we settled down to live as normal a life as being disabled would allow us. We were happy — we had each other and that was all that mattered. So life went well for about ten years: we had a lovely home, we moved again to an even lovelier home up in the Borders and we had animals galore, lots of fresh air, good friends, loving and supportive families, everything… I did get tired spells and I just put it all down to perhaps a hormone imbalance as it would come and go. Then we started to think more seriously about having children; we had everything apart from a baby… we had tried ourselves, but without getting into it too deeply, we could not conceive naturally. So our GP got us on a list and we had two shots at ICSI (specialist IVF). I couldn’t manage the third try as that is when my M.E. symptoms started. I think all the drugs and stress triggered something that had lain dormant since childhood. I’d had glandular fever as a teenager and had then what must have been the makings of M.E. but not full-blown. I do remember the tiredness, not getting over illness or viruses well, but I never suspected I was any different from anyone else… Oh, how I was wrong!

So 2000/2001 I was floored by M.E. I was ‘diagnosed’ by some specialist up in Edinburgh whom I had been referred to by my GP who did loads of tests etc to rule out everything else, said I had M.E. and sent me on my merry way! I struggled for years having this illness, life was very hard, people saw the usual, smiling, happy Carole and thought I was ok, only my husband and I really knew the whole truth…we just muddled through. Thinking back I don’t really know how one of us didn’t end up in hospital. Then I discovered the ME Recovery Group, a nutritional support group in the Borders. I began a regime of supplements and changed my diet: no wheat, sugar etc. and amazingly things started to get better. I think that period had to come for me as I needed all the strength I could muster for the coming two years.

My husband was found to have cancer in his kidney and he had to be admitted to a specialist unit in Glasgow. After lots of worry, tears, stress, travelling, money worries, he survived. He was just regaining his fitness when he accidentally spilled boiling water on himself and was admitted to a burns unit, with serious burns to his legs. That went on for months but we coped, as you do… I still was feeling well enough to cope. I think I had to be somehow — I found the energy from somewhere! He is healed now, but he has to be even more careful with that skin so it is really a daily worry, just to add them to the pile!

So if you saw me at the end of last year you would have thought I was just a normal, if not fat, person. I started walking, cycling, gardening, charity collecting, admin work…. yes you guessed it, I just did way too much all at once and my body just crashed. I have had a bad two months. The palpitations have been constant, I’ve been so very tired and nauseous and have pain that I wouldn’t wish on my worst enemy. I carry a sense of hopelessness and guilt because I am not able to help my husband as much as I need to. He helps me a lot of the time, we lean on each other! It scares me too much that I will have this awful illness forever, it’s been 8 years now and I feel so afraid of what the future will bring. With us both being so reliant on each other, what if a day comes when we are just so unable to help each other that we have to have outside help — we so do not want that— we have tried our whole married life to be as normal as we can be and then this awful M.E. has robbed us of the ability just to be happy.

I know I have heard of people who have had M.E. and regained their health. I think I am on the right path to recovery; it’s just going to take time and a little restraint from myself. I have learned now that I must not push myself to do everything at once. I must take each day as it comes and be grateful I have so much happiness in my life that it rules out the misery that M.E. brings. I am determined that I will one day be able to do all the things I dream of doing and not feel so dreadfully ill afterwards.