Carole’s story
By webmaster • Aug 21st, 2008 • Category: Member StoriesI 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.
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I read your story with tears in my eyes!!!!!
What an inspiration you are !!!!!!! to us the many sufferers!!!
To have cared for a loved one when fully fit was admirable but to have been struck down with this terrible scurge M.E. is a tragedy and one you certainly do not deserve.
I personally thank you for posting your story on our website ,you are very brave.
I hope that people who have any doubts about the devastation this condition causes read your blog and in reflection change their opinion of this illness.
Hope your path to a full recovery is realised , you deserve that at least.
regards
John C Thomson
Hi John,
Thank you for your kind words John.
I have definately been a lot better the past six months or so. More ups than downs, if you know what I mean.I credit it to the Lifestyle Management Course I went on last year at the Thistle Foundation Edinburgh. They taught me to be less hard on myself and reaffirmed that I am not alone in this illness. There are so many of us. Their course included relaxation, pacing and acceptance advice. It has helped both my husband and I really, as each week I’d come home and we’d discuss what had been talked about and we both put the lessons into practice. It also helped a great deal to be with people just like me, going through the same symptoms and difficulties.
A friend and I have started support meetings in the Borders too, so we can reach out to others in the same situation. We were in the local papers last week, see here: http://www.berwickshire-news.co.uk/news/New-support-group-for-Borders.5239331.jp
Love, Carole.x
Wow. i cannot begin to think how hard it must be to have to try and look after someone as well as myself. I have had M.E. for nearly 4 years and i know how hard it is to just take as much care of myself as i can. If i had to look after someone also very ill i would find it so difficult to concentrate on my own pacing and boundaries etc. I have had to learn how to say ‘NO, i am unable to do that at the moment’ which is so hard, especially around those i love most (my family and friends). But through this debilitating and monstrous illness i have found such gratitude for little things. e.g. the sun shining, birds singing, flowers in my garden and a renewed love of water colour painting through the U3A. Keep positive and i was told once by a friend who has had M.E. for 18 years, “Choose your battles” meaning there are some people who are ignorant about M.E. and want you to almost justify being ill with it, leave them to it. My real friends and family don’t do this. I hope one day i can walk long distances through the fields again. love Mo x
Its good to hear from other people who are coping with M.E.I started to get the symptoms around 3 years ago after a long stretch of overworking late nights in a bar.The first symptoms were memory loss and a sense of confusion,embarassment socially as I couldn’t remember which conversation i’d had with who and so would repeat myself,I withdrew socially,then the aching limbs and lowered immune system started.I went to my doctor and she said I was stressed and gave me relaxation CDs!Of course I was stressed.I didnt know what was happening to me,I just knew I felt unwell and unable to cope.
After a period of a year travelling,mostly resting, in Thailand I came home.I was engaged to a Thai man but he was refused all kinds of visas to get into the UK.I flew back to Thailand twice trying to sort this out and the second time married.However on return he was again refused entry to the UK and I began an appeal with a lawyer.All in all the fight for the visa took a year and a half.My finances were seriously in the red by this time and I was out of my mind with stress and struggling to cope with official things like lawyers apointments etc.My M.E got a lot worst.Finally I had to make a decision and left to go and live in Thailand knowing the difficulties I would face with the language barrier and trying to find employment.
I found a job but on the day I was due to sign the contract as an English teacher my husband got a call from the embassy saying the decision to refuse him entry to the UK was overturned.I was so relieved as I had been unsure how I was going to cope as a teacher with my M.E being bad at the time,in charge of 22 kids in a room with no air con.
We returned to Edinburgh and I struggled on doing agency work as a carer but again overdid things as was doing 50 hours a week.I got a full time job caring and felt I had to take it in order to pay of all the debt we had accumulated.I am struggling with this job too, as I am required to work 49-56 hours in a week but cannot afford to quit.My employers are not very sympathetic to my M.E and although I have approached them about changing shift patterns etc.They are unwilling to accomodate.I’m unsure where to go from here but I do know that my health has become of utmost importance to me and although the job climate is not good just now I hope that it will be possible to find a something involving less hours so I have some chance of recovery as at the present time I am becoming repeatedly ill.
Gill
Hi Everyone,
I thought I’d drop by and say thank you to everyone for their kind words and also let you know what has been happening in our lives the past year.
Unfortunately, it hasn’t been so good. I was diagnosed with Endometrial Cancer and had to go in and have a total hysterectomy.It was such a stressful time for my entire family but I have come out the other side learning a few things along the way.
I have learned that I do have the most wonderful husband and Mother & Father anyone could hope for. The three of them have been so supportive and made the whole experience so less traumatic than it could have been.
I have learned that I am still the strong person I thought I had lost because of this dreadful illness. It is true that the difficult things in life that don’t kill you make you a stronger person. Physically I couldn’t win a fight with a five year old…but mentally I am proud of what I have managed to come through in life and I will never let anyone make me feel bad about me ever again…those people are not worth my time.
I also learned that the widespread belief that doctors and nurses do not take ME seriously is not always true. I do realise this happens a lot and I can’t imagine what it must be like to be belittled and disbelieved but when I went into the BGH last year I was treat so well and with such compassion and respect by the Doctors, Nurses and Aneastheologists. They listened to my concerns, gave me different anaesthesia and pain relief and were very supportive of me during my recovery from the major operation I had to go through. I could not have asked for better.
I have also learned that housework CAN wait and that sunshine does wonders for your soul.
Take care and stay strong Carole.x