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Hi, a friend of mine Brooke, suggested that we co-write a book about our lives during our illness's. Brooke herself has Fibromyalgia and I have Chronic Fatigue Syndrome and Fibromyalgia. What we have in mind is a book that is full of stories from those that know - YOU the ones with these illnesses. No matter the content of the story, we will attempt to print it.(My advice would be to right click and print the page out, or save it as a favourite and make it available off line, so you can read it when you have the energy).
We do not want you to hide; your individual story may be the one that helps another live. Your story is unique, your problems, worries, anecdotes are all unique, yet they, may be very similar to another's story. The more we have the more we can help to reach those affected. We could help their family's to cope, provide new information to Drs and specialists.
This book is not country wide, we want it WORLD WIDE. We want to send out a message that these illnesses are present, they are not "in our heads", and we want new information / research. Above all, we want to be a support book, not a self-help book, but a book that will be your support during the dark and lonely moments.
We would like any story however brief, I've attempted to put some ideas down, but those are suggestions, we just want your unique story, of what has happened to you since being diagnosed with CFS /M.E./ FM etc. The good the bad and the ugly. Even stories from your families, friends, your DRs anyone who knows you and who has been affected by how these illnesses literally take your life apart at times. We have also had stories from those who chose to sadly end their life.
If this book can stop one death or change one mind or give hope to one person, or even change one Drs opinion we will call that a success. Most of the money made from its publication will be given to researchers who are not sticking to the 'its in the mind theory' we want those small studies with a different focus to get help. We are also considering setting up a research fund that we the sufferes have the choice of where the money goes.
So far, we have had a good response, but we do need more stories specifically from family and friends. I'd just like to add that we have over 100,000 words but we aim to have more, the need to edit and comment on research articles is going to take a long time, so if you want to help in that way please do so, find some research read it and write an opinion about it. We do need to get the authors permission to use all of the text otherwise copywrite is infringed so a review of research papers are quicker to do.
You can send the stories to me Michelle click below.
Or you can email Brooke click here
Or you can email Phyllis click here
Just to show you what we mean by a story, I will give you a long version of my own. The amount does not matter it is your message. It may even give you a lift when you are feeling low, seeing what you have achieved. As you pass your experience on, it may be a key to another door. So please write all you can, BUT do not push yourself.
YOU DO NOT HAVE TO GIVE AS MUCH AS I AM DOING NOW.
I am 31 years old, married to James a lovely man and we have four cats. I am a nurse, stress consultant, and psychotherapist. I have always been active, I enjoyed physical activity at school, and always used to walk or cycle whereever I needed to be.College was 5 miles away from home, I use to cycle that distance plus more if I decided to go into town etc. In 1990 I became a post woman so I would cycle to work, cycle to my delivery round, cycle and walk around delivering my letters, cycle back into the office. I would then invariably go swimming, swim about a mile and if I had a partner I would have a game of squash as well, then of course cycle home again. If I chose to see friends I would get on my bike and cycle there, no matter the distance, it never bothered me even if it was raining!
August of 1996, I decided I needed to loose some weight, I was toned and fit but I wanted to loose some more weight. At the end of September, I had to go and see my Doctor because I was getting severe chest pain. It felt like heart-burn and indigestion, but the normal antacids did not work. As luck would have it, there was a consultant surgeon at the practice. My Dr asked him to have a quick examination of me and they both concluded I had an inflamed gall bladder - after he grabbed it and I went clinging to the ceiling! I was given strong analgesics and antibiotics with an instruction to stop eating Fat. Which I did - it worked wonders for my weight! Sadly for me though it did not help my gall bladder.
After an ultrasound and an endoscopy (never be awake for that)! to rule out a stomach ulcer. The finale diagnosis was gallstones, hence the severe pain and the need for antibiotics. During this time November 29th, to be exact I actually got married and had lost the few pounds I wanted to. It was a nightmare for the dress designer as each fitting was different! I was still working as a Registered Nurse/Staff Nurse, swimming, and playing squash etc. I was finally admitted for surgery in March 97 - my birthday of all days to have my gall bladder removed. The surgery was keyhole, as recovery is supposed to be quicker. I was discharged a day latter, and was re admitted one day later as I was in agony I actually asked "are you sure you took the gall bladder out" as the pain was as intense. The Registrar saw me on Tuesday morning and said they thought that maybe the space where my gall bladder had been could have filled up with pus etc; I had an internal abscess. They decided not to drain it, as they wanted to see if the body would reabsorb it, itself. A week later, I was discharged; I was told I should be able to return to work in six weeks eight at the outside. After resting for a week until the stitches came out, I decided to do some gentle walking. I used to do about 3 miles a day so I tried about half a mile, when I got back home I was shattered, I put it down to recovery and continued trying to walk and increase the distance. Instead of increasing I had to decrease it, I was finding it harder and harder to do the exercise. I went back to my Dr who sent off bloods and tested for glandular fever, anaemia etc, all came back normal, I needed to take a little folic acid. So I went home and everything just went down hill I was planning on returning to work in May, May came and went; I was still at home.
This continued until September, my Dr thought I may have post viral fatigue syndrome, so I went to a consultant (specialist) he said possibly but I would be able to return to work in three months, that was way back in September 1997 - I'm still waiting, it's the longest three months I have ever known! I saw a physiotherapist who gave me some exercises to do but I was finding lifting my foot harder and harder to do, it was if my brain was saying lift but the message was being passed along the neurons, they were probably chatting at the synapse eat all you want café!
Eventually my Dr and I agreed I had and still have Post Viral Fatigue Syndrome / Chronic Fatigue Syndrome or more commonly termed in the UK as M.E. I also have Fibromyalgia and an inflamed carpel tunnel in my right hand. What does this mean? I get confused and place items where they should not be, such as the milk in the washing machine - I thought it was fabric conditioner! I am chronically tired even after the smallest amount of exertion for example climbing up my stairs even with assistance. This action alone causes my leg muscle to ache, go into spasm become numb yet tender to touch, I loose sensation in my legs, hence my commonly occurring falls. It is a very strange sensation and when it first started to happen I was scarred stiff! If they become 'dead', it takes James about 15mins of massage before my legs return to my 'norm'.
During the night, my legs can go into long periods of cramps. I also have a spider sensation / ants crawling under my skin, (medically termed as paraesthesia) this means my legs and arm muscles twitch. At best, this is annoying but eventually quite painful (after about 30 minuets, it is painful and I need analgesics. Sadly, the spider sensation tends to remain even with the analgesics.
I suffer with a great deal of pain primarily in my muscles, (especially my legs, arms and back), joints (especially my spine and knees). My right hand / wrist is painful to the extent that I now predominantly wear a wrist support - given to me by my Occupational Therapist. This makes any activity even reading, and writing very difficult. As for the activities of daily living, I require assistance. I have tried many treatments including TENS machine, acupuncture both were good for pain to a degree but sadly they had no long term success, they did not alter my PVFS/CFS/ M.E. symptoms.
I have very poor concentration levels and my short-term memory is a problem and is very confusing. I forget words and cannot always continue a coherent conversation, as I tend to find that it becomes disjointed. I also suffer from forgetfulness and my memory is getting worse. I find communicating on the phone difficult most of the time, not just because of my communication problem of forgetting words etc, but I find the phone heavy to hold, now I use my speakerphone. I have tried to do courses some have worked other have not. I was doing an open university course when first diagnosed, by the end of the year I took the exam, laying on the floor! As sitting at a desk and holding my head up was too difficult.
Due to the weakness in my arms and legs, I am unable to wash my hair or dry / brush it independently. My husband now has to wash me in the bath and help me in and out. My Occupational Therapist has provided me with a bath seat and a back sponge. The seat is useful as it makes the job easier getting out of the bath, and that is helpful for my husband. However, I never really feel as though I have had a bath when I haven't been able to have a soak.
My sleep patterns have become irregular, I sleep for long periods, which include vivid dreaming, or I have insomnia. However, as I have mentioned above even though I sleep I am often awakened due to pain. The sleep I have is no longer what I would class as normal, as I do not feel refreshed upon waking. All I feel is a need to sleep more. I have become aware of a heightened sense of smell; hearing and due to this, I can become nauseous when being wheeled past a person wearing a strong perfume. I can no longer go into a shop that sells beauty products, as the smell is too nauseous, It is the same if I go past the cleaning products in the supermarket.
My condition is not only variable day to day it is also variable throughout a single day. Even on a good day where the pain is bearable, I have to use my N.H.S. wheelchair. I cannot propel myself for any long periods and if I try to it has to be on a flat surface. I continue to try and have managed a couple of yards on a supermarket floor, before it becomes too painful. Every time I go out-side; I need someone to push me. My bad days consist of being in bed, sleeping, requiring full help etc
I have so many symptoms that each time I visit my Dr every month I have a new one to add to the list. I have tried a variety of treatments, sadly all of which have been useless for me. I look back on the healthy active person I once was, swimming, squash walking being a nurse, etc and now I am in a wheelchair!
As you can see this is the start of an in depth story of my life with this illness. You can go into as much or as little detail as you wish. You do not have to write a lot, just enough to get your thoughts and feelings across. Remember though that your stories when compiled together will hopefully be published so only mention things you are prepared to tell others. We have come up with a few categories, you can decide to focus on one aspect of your illness, or you can tell us your whole story. We are sure one of the categories will be of use.
If you have friend or know of people who would take part in this endeavour, please forward them to this site. There is no rush, you can only do as much as your energy reserves allow. We do not want to put added pressure on you. So PLEASE do this at your own pace. We have NO DEADLINE AT THE MOMENT AS THE BOOK IS IN THE EARLY STAGES.
Thank you.
MICHELLE, BROOKE and Phyllis
Here are a few links and any can be added.
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Click below to send an email to Tim who took the wonderful picture above.