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HELLO
My name is Dayna and I`m so glad you have chosen to read my story. I came up with the idea to put my story into words based mainly on the need to share my experience of fibromyalgia, hypermobility syndrome & chronic fatigue syndrome with others. Them who may be suffering the way I am because of these symptoms that have altered and dominate my life. I'm having to accept and deal with that and writing my story is a way to help me cope and accept it too.
ME, OUR CHILDHOOD & WHY US?
I am 23 years old and got diagnosed with Fibromyalgia in March 2001 by a Doctor Deighton but suffered at least a year before that, although my symptoms have progressed as time went on but lately I have sort of leveled out. I was also diagnosed by the same doctor with hypermobility syndrome and that I had hypermobilie joints (floppy lax joints) since birth but had now developed the syndrome . And later on it became apparent that I had chronic fatigue syndrome (M.E.) too. Suffering from these conditions is the hardest thing I`ve had to learn to deal with in my life. But I guess what dont kill us only makes us stronger! Firstly when I was diagnosed I was in denial, then angry at others who didn`t have it, why me I'd ask myself what have I done. Then I felt sorry for myself and got very depressed. Now I`m just trying to accept my life this way and trying to adapt my life to live the best way I can. Although I still have lapses of depression because im only human. But I`m handling the stress of it all much better than I used to. My sister also suffers with the same and we think that our hypermobility syndrome passed on through our genes, caused the fibromyalgia. Although we aren`t sure. As we are still young maybe the future will give us an answer. One possibility is that it came from my mums side of the family as she and my aunty and my cousins have a few floppy joints. Luckily no one else has developed the syndrome. So maybe something else triggered it off, we are not certain. The other possibilities that we can think of is that me and my sister both had a tattoo at the same time, between 6months to a year previously before symptoms appeared. I don`t know if this has any connection or not. Although there were tell-tell signs before my tattoo, but at the time you don`t recognise them. We think that there is a definite possibility that we had HMS and possibly fatigue as children but obviously to a much lesser degree. I was a very weak child who had virus after virus (I was fed up with hearing virus from the doctor) I used to sprain, strain and pull my muscles all to easily. So maybe that was a little taster of what was to come. At the time we just thought that I was a weakling and we often used to make jokes about it. My family used to call me a weakling and when I wouldn`t run to fetch the ball in family cricket, I was just called lazy. Someone used to say sarcastically "come on flash" in reference to how slow I was. No one believed my legs actually ached, even me, I sometimes even doubted myself. They also used to say I was a "drama queen" that I went over the top when I had hurt myself. I didn`t think I did go over the top when I was hurting in relation to how I was feeling, but I did think that maybe I was just someone who had a low pain barrier. I remember thinking that everybody felt ill when they first got out bed, and everyone took an while to unstiffen and get going. I thought everyone felt shaky and ached and get tired out from things quickly and often used to just tell myself I had another virus. I was a slow walker and often struggled to keep up with some of my friends and was late to some school lessons. When writing in the classroom I often got hand and wrist aches, I hated P.E and was useless at it. I remember nearly collapsing one afternoon after running around the 400m track and I had to be helped inside. I Was fine after an hour or so was just so weak and exhausted and after a rest i was fine. At the time I didn't give any of these things much thought and when I did I just thought everyone felt this way or that I was weak or I'd overdone it. I`d come up with loads of logical reasons. I was tired a lot too and often had to have days off school mainly to rest. My friends just thought I was skiving off school. It was especially worse towards the end of a day and the end of a week. And my part time job didn't help that was exhasuting too but i didnt care I loved it. And I did tend to chose my job over school on many occasions as I didnt have the energy for both. Now Looking back you can sort of see little signs. I always fractured/sprained/strained/pulled myself from doing slight things that shouldn`t affect my body in the way it did do. But at that point we were oblivious to the facts of hypermobile joints. I remember going to hospital 3 or 4 times for x-rays on my arm, fingers and ankle. Each time I was told that I had sprains, strains, soft tissue damage, pulled muscles or the ligaments, just minor things, I had never even broke a bone, even though it often felt like I did. But obviously nothing like the pain I experience now. When I used to get up in the morning I was always complaining I didn`t feel well, my mum used to say "it would be nice if you got up one day and felt well", and she also threatened a few times to send me for a medical. I insisted I was fine and fobbed people off including myself with saying I had the flu or because...and I would always think of some excuse. But my parents were like that too. If I told them about how I felt they would also do the same. So we were bouncing logical reasoning back and forth. Although thinking back now I should never have complained they were the good days and I should have been grateful I could have been a lot worse, which I soon found out. When we were kids my sister was often complaining of painful knees and used to have a water bottle on them at night. We thought that she was trying it on, so she wouldn`t have to go to school because she never did like school but now we can see it was just the start. She used to shake alot from weakness and also like me had too rest if not more than me. She had more time off school as a child but we used to blame her asthma. We all wish we`d have took more notice when we were younger but you never imagine it could be slight signs of what we have today. And At the time there seemed to be genuine reasons for these things. With me virus, glangularfever, drama queen, weakling, with my sister it was her asthma, virus, not wanting to go to school, and idleness. These excuses were normal to believe at the time and the given situations and they were mostly backed up by the doctors too. We both had countless DR's visits as kids it used to be a joke ... ANOTHER VIRUS, in the end I didnt bother going to the drs. Even if we had noticed something was wrong it wasn't affecting our lives. Back then in a way we were lucky we had a pretty normal childhood. I would have hated going to specialist after specialist as a child. For me my symptoms didn`t really progress until around 18. My sister was much younger at just 14.
MY SISTER
My sister Dee now aged 20 was JUST 14 when her life took a down hill decent. It started with her dislocating her knee and from then on she greatly deteriorated. We think the cause of her knee dislocation was her hypermobility syndrome as she did this by just taking off her shoe, but maybe her dislocation brought her problems on more quickly. She could no longer go to school, unless she went in a wheelchair, she progressed onto crutches and on to wheelchairs and now currently she relies on her powered wheelchair all the time, which she uses both indoors and outsoors. My sister has deteriorated more rapidly and severer than me and we sont really know as to why. She has been to numerous specialist, rheumatoligists and orthopaedics. She has been diagnosed with the same as me, And has also been told she has flat feet and knock knees and by 25 will have osteoarthritis. Along the way a few specialists have told her it was in her head or that it was growing pains or blamed the dislocation. Because she was diagnosed with Fibromyalgia as a child she had to attend the children’s department every week (similar to a pain management clinic) which was run by two specialists. They told her she would get better and that she wasn’t fighting it hard enough. Their various approach to getting better included making my sister walk around the block, go to bed early, physiotherapy, diet, along with constant questioning, non believing, and not allowing her or us to talk or say anything negative. Including not talking about the pain. Plus they even refused to use the word fibromyaliga and mainly talked about school. This seemed to be their only concern they would go on and on about school. Repeatedly asking questions like “Do you like school” and “Do you get bullied at school”. It was so frustrating like school even compared to how much pain she was in or how hard she struggled. We went with their approach as we didn’t know any better at the time, and Dee tried really hard but was just getting worse not better like they had previously said. She became more debilitated and more fatigued. The physiotherapists exercises which she had been given to do were making her hypermobility in her joints much worse and at the time we knew no better either and we put our trust in the professionals not realising they had no clue either. I particularly remember one time when I went with her to a physio appointment and watched her doing these exercises. They were half press ups and her arms were shaking so bad and she could bearly lift herself up. And the physic was shouting “come on Dionne don’t flop your arms again, your arm is supposed to be there not there” in reference to the alignment (which is hypermobility syndrome) and like she had control over this. Now looking back it was awful as to how she has been treated and humiliated. At the time she felt it was all her fault and she wasn’t trying enough. Which I now understand her feeling this way. Deep down you blame yourself anyway even though it is not your fault, so if someone is telling you it is, you begin to push yourself and end up a lot worse. Determination and pushing yourself is a good thing but there are limits and repercusiions from doing so as to which we have both learned the hard way. Since Dee’s first physio course, we have both been to different physios and treatment courses and luckily they have never treated me that bad. But still none of them seem to know enough about hypermobility syndrome and end up giving you the wrong exercises which can cause worse alignment. My sister has attended 3 different physiotherapists in total, where she has followed a fibromyalgia plan & also attended a hydrotherapy class but because of her severe hypersensitivity in her legs hydrotherapy was useless. However some of the physio made her symptoms a lot worse and her walking worse too. Weather they would have worsened without who knows? She has tried various tablets that have had no effect either.
MYSELF
I am now 23 years old and I was diagnosed at 18 with Fibromyalgia, Hypermobility Syndrome, & Chronic Fatigue Syndrome also known as M.E. Later on I developed TMJ Temporo-Mandibular Joint and got diagnosed a few months ago. When I first stared with symptoms that were affecting me I was afraid to go to a Specialist as I suspected something wasn't right as my sister had already been diagnosed. Deep down I knew that I had the same but I covered it up at the start and used to tell myself maybe its just sympathy pains. You know like twins have, even though we aren't twins. My mum knew there was something wrong with me and suspected the same as my sister, she tried to convince me many times to see a specialist but I refused and insisted I was fine. But like they say “you can run but you can‘t hide” In the end I had to face up to it I had no choice. Even after diagnosis I sometimes pretended nothing was wrong with me, I found it really hard to accept. After I eventually plucked up the courage to see my doctor who immediately referred me to a specialist. I only had about a two month wait to see him I couldn’t believe how fast it was, it has never been that fast since then. I remember that morning in March 2001 where I went straight in for my appointment with a Doctor Deighton as a lot of people were late because of the snow. After a chat and a physical exam including the tender point’s test He said he suspected either Rheumatoid Arthritis or Fibromyalgia and that blood tests and X rays will determine which one. He informed me I had Hypermobility Syndrome but breezed past it like it was nothing and at the time we knew nothing about it either. After the blood test and x-rays results were in I was diagnosed with Fibromyalgia too by a letter also saying the next step of possible treatment and management paths to follow. I felt a little rejected it was like this is what you have bye have a nice life. So during the next year I found information out for myself about FMS, HMS and M.E, by using the internet and going to a support group. I gathered information and learned as much as I could, lots more than I had ever been told by any doctor or specialist. I followed various treatment paths including Physiotherapy, Fibromyalgia Classes, Pain Clinics, Hydrotherapy, Relaxation, various prescribed and non prescribed tablets including Amytriptaline, Dothepin, Voltorol, Ibruprofen amongst others, herbal tablets like Glucosamine, Cod Liver Oil and some I can‘t even pronounce, and a range of self help techniques, but I was wrongly looking for a cure, which obviously wasn’t to be found.
The main symptoms I have are the constant pain & fatigue. I also swell and have stiffness in my joints with loud cracking and grinding noises that sometimes hurt. I also have muscle spasms and my joints lock up (a.k.a Sublaxtions a common symptom of HMS) However I’ve found that heat eases this lots & gentle massaging can stop it from happening. I have countless minor injuries (e.g. strains, sprains, pulled muscles, bruises) All which happen from slight activity but again this goes hand in hand with HMS along with my joints bring out of alignment. My sister has similar symptoms but a few worse ones too. Like sensitivity in her legs, she can’t even rest her hand on her legs or even something as light as a tissue or feather because of the intense pain. (We think it might be her nerve endings.) This causes extra problems her legs are quite dead and she has less strength than I do and can only manage to walk a step or two at most. Even us two vay in severity. Her days don’t fluctuate where as I have good days and bad days. Although I have to rest a lot but I have learned to plan and go at my pace. This means I have a few limits and have no choice but to have a lot of rests something some find it hard to comprehend.
As I progressed I had to stop driving my car mainly because of the pain and weakness but my concentration was poor too because I was so fatigued, it was like driving after taking sleeping tablets. I don’t think safety wise I should have drove as long as I did, i had so many dents in my car from bashes, but I was determined as it had taken me 4 tests to pass my driving test. It’s really difficult accepting not being able to do things that you used to take for granted and before I had these symptoms I was oblivious to people like me. I worked in a well known Jewellery Shop where I was a diamond advisor (just a posh title for sales assistant) and was set for a promotion to supervisor but had to refuse it as I was struggling to hang on to my job as it was, without adding workload and responsibility. I had originally worked full time but as I deteriorated I dwindled the hours down to 12 a week until I could no longer work. Friends seemed understanding and were willing to help but in the end I lost touch mostly down to me because at the time I wasn't coping too well. So I was in major depression but tried to carry on. My sister did inspire me though as she seemed to be able to cope better and it helps having someone who understands. Well as time passed I was struggling more and found myself getting worse. My fatigue had become so bad that even the slightest of things exhausted me both mentally as well as physically. I had suffered with fatigue before but not to this degree, Chronic Fatigue Syndrome (M.E) is an understatement to how bad you feel. Sometimes I am so exhausted I can’t string a sentence together and all words come out muddled up and I can’t do anything physically either until I have had a rest. Sometimes I have to sleep and sometimes I just need to lie down, although no matter how much sleep I do have I’m still always tired its bizarre. I even wake up knackered. My walking is also limited because of the pain and weakness in my legs but cos I look so well people dont realise.
After having to stop working and driving I went to the dr repeatedly complaining of the worsening of my symptoms and continually trying new treatments. I couldn’t accept what I had been diagnosed with. Nobody had heard of them, plus part of me thought I had something worse and part of me wanted something worse something with a cure. Or something else that had different treatments because none of these were working. I got referred to yet another specialist after some blood tests my dr did that showed some abnormalities. My ESR & CRP(inflammatory markers) were very high at 46 & 20 which means there is active swelling and can also contribute to the diagnose of RA and many other conditions. So during my visit to the specialist (Doctor Walsh) where he repeated blood tests about 3 times and sent me for an isotope bone scan. All this went on over a 6 month period. And the waiting and worrying was really playing havoc on my nerves and is what caused me to tip over the edge. It was just too much for me I couldn’t handle it. So much so that I hyperventilated and had to go to hospital and had panic attacks. A panic attack sounds nothing but believe me they are not very nice at all. The very first one I had which is what caused me to hyperventilate, I was shaking, pains in my chest, couldn’t catch my breath, lips turned blue, and I didn’t know what was happening which made me panic more. I have never hyperventilated since then but my panic attacks controlled my life for the next 2 years after that. Now I have overcome them with relaxation, positive thoughts, and mainly with the fact that I have accepted my life this way. As time goes on it does make a difference you do learn to accept it. My panic attacks can still creep back but nowhere near to the severity I used to have them. The cause of them was the stress of being ill and not dealing or coping with it. Now I have to try not to get too stressed about things or to dwell on things and take each day as it comes. Which I have learned to do quite well. The outcome of my specialist visit left me with an elevated ESR and CRP and now also my blood showed a component of lupus but not enough criteria for a diagnosis. He couldn’t explain why they were showing up and said that maybe with age I will have more answers. So that was that I had been through all that for nothing but more question marks hanging over my head. So after this last visit I felt it was time to say enough is enough. I had got to get on with my life and try to manage as I could be stuck with this for the long haul and I was sick and tired of blood tests, bone scans, doctors visits, specialist visits, and most of all having to repeatedly explain how I feel. Plus I don’t think I could handle any more of it. The next couple of years my panic attacks and my depression took over a little. Looking back I realise I put my family through hell I know that and I feel bad for it. I’m not going into it too much but let’s just say I was in a dark place and I was hell to live with and still my family were so supportive. Well after a visit to a physcologist and much needed help from my mum I got through it. Gradually things got better concerning my panic attacks it was very hard work but that dark time is behind me now.
Now after all the past treatments the management approach to my symptoms the best thing for me is the following. I do physio exercises & I do Yoga which is great for mind body and soul. I eat a balanced healthy diet & basically I have a laugh and try to be positive and don’t dwell on things just go with the flow and take each day as it comes. This has really worked for me and I feel a lot happier now and have really accepted things. Although this didn’t just happen over night it took years for me to come to terms with this. I have learnt to work with my symptoms and not against them. It is no good fighting them they will win every time.
TREATMENTS & MANAGEMENT
We have been told by many different doctors, specialists and physiotherapists that "there’s no cure" and "there’s no magic tablet". And it is a difficult thing to accept and to come to terms with. But there is no choice so instead of searching for a non existent cure, we have found a few ways that help us to cope and live the best way we can do but at the same time to still have hopes and goals just not too unrealistic or it is too much of a hard blow, as we have experiences many times the hard way. But we are still open to trying things because anything is worth a try, just to try not to set our hearts on things. In the past we have both tried Amytriptaline but with no effect at all. I have also tried Dothepin, Voltarol, and Ibuprofen along with many other prescribed drugs. None helped any with any symptoms and often gave me a few minor new ones like dizziness and feeling sick. I currently take Paracetamols but they are mild and only help with my headaches and migraines. I also sometimes take Ibuprofen to help with my swollen joints. Personally I now think it is best to stay off the prescribed drugs for long term use because they don’t help any so I don’t see the point. You end up just taking them for the sake of it and it becomes a habit or a dream that one day they will work. Once I went to the doctors after taking some pain killers he had given me. I had been taking them for about 3 weeks and they had no effect at all, so I went back to see him and I asked “How long do these take to work” He replied, “About an hour possibly two hours.” I felt so stupid. Plus the long term affects of taking prescribed tablets and the side effects are definitely off putting, we didn’t want to get anything else added on top of what we already had just from taking tablets for the sake of it. And it is not like you need the medication for a day, week or even a month. It is long term, repetitive use. So after the prescribed tablet route with no joy I decided to go down an alternative route, in the form of herbal and homeopathic tablets. I took Glucosamine for over a year, I’ve tried MSM, Chondroitin, Cod Liver Oil and some other things for chronic fatigue and pain that I can’t ever pronounce or even remember their names now. But none helped me. I do keep taking cod liver oil for a months at a time but only in winter. They don’t have any effect on the outside but they are supposed to build your joints and also contain vitamin D (which you get naturally through the sunlight which you don’t get in winter) and I hope they are helping on the inside. As there is evidence that cod liver oil reduces the destruction of joint cartlidge and inflammation and may prevent and even delay joint replacemants. It is especially good for people who suffer with osteoarthritis, which is what the majority of people with HMS do develop. I have tried a Hydropool which is a swimming pool for people with Fibromyalgia and Arthritis problems with the water very hot like a big bath. The idea is to do exercises in the warm water but be warned when you get out you really suffer for days afterwards with more pain too. And when I got out I was shaking from weakness, and it totally drained me of my energy. (Personally I prefer the bath the hot water warms my joints inside as they feel very cold inside.) And the getting to the Hydropool is such an energy zapper in itself it is not worth it, but it is something I wouldn’t rule out and possibly try it again. I learned about Hydropools from a Fibromyalgia Support Group I joined and they had arranged specific times to go so that the only people in there are from that group. It is definitely something I would recommend to do, to join a support group. I learned more about what I was suffering with and all about various treatments than any dr or specialist or physiotherapist ever told me. I then got referred to a pain clinic from my Doctor but after 2 visits to a pain clinic consultant where I asked for various things including acupuncture as I’d heard that it helps some people with chronic pain, but they advised me against it. The consultant said it is only for those who suffer from pain in one or two joints of the body not all over like mine. He insisted he couldn’t help at all, which I was starting to get used to hearing. But it still hurt every time and I felt rejected once again. He passed me on to the physiotherapist department which was a 10 month wait. There I attended fibromyalgia classes. This was a group of 10 of us who did a 9 week course and assessment. They were all much older and most were able to do more than me in the terms of exercises. To be honest I felt a little out of place. Whilst they were on exercise bikes, and balance boards, I was practicing my posture by standing and sitting. At the classes we did hydrotherapy, relaxation techniques and exercises, and there was a half hour talk in each session. The exercises were designed specifically for each person, however mine made me deteriorate and suffer a lot more pain. And after 4 weeks the physio told me I was doing the wrong sorts of exercises (the ones she had given me). Apparently they were adding too much pressure onto my joints. Also they told me to lock my knees back whilst standing, then 4 weeks later she advised me that I mustn’t do that. A total contradiction to what she first said. But now it is quite obvious that they knew nothing about Hypermobility Syndrome, even thought they said they did. At the time I didn’t know any better, I only knew a little about HMS myself. So I researched more about the condition through the internet and found myself explaining to the physio`s about HMS. And with having both FMS & HMS the exercises that are recommended for FMS sufferers make HMS symptoms worse, that is why the physiotherapists gave them to me in the first place. But I now know it is very important to get a physiotherapist who knows about Hypermobility Syndrome as you must not overstretch or overuse your joints in anyway, only build the muscle up around the joint. Because the joints are obviously already over normal limits and out of alignment it is important not to increase the range even further or do too much repetitiveness. This will only cause more pain, weakness and injury and as people with HMS are already prone to a range of injuries and their sense of joint movement is impaired (something called proprioception), this makes the right kinds of exercises even more important. So I now do slight stretching and strengthening exercises once a day if I can, specifically to build up the tone of the muscles around my joints in order to tighten my joints up as much as possible. The physiotherapists lost interest in me towards the end of my course and didn’t bother if I was doing the exercises or not. The only thing I benefited from was the relaxation and the lack of understanding of HMS from the physiotherapists. Though they knew quite a bit about FMS which is at least is something. The final assessment from the Fibromyalgia class was that I needed counselling to deal with having this for the rest of my life, which was mentioned to me nearly every appointment. At the time I blankly refused and thought only mentally disturbed people went to counsellors or shrinks as I would call them. But I know different now after visiting one about a year ago. I was referred to a pain counsellor by a specialist and decided to be open minded and go. Especially after suffering worse and finding it really hard to cope with being like this. It took a while for an appointment to come through and when I got there I was really nervous. But my counsellor was really nice and taught me a few things about pain management and a lot about the stress and panic attacks I was suffering highly with. But after one visit she said that I didn’t need to go to her anymore. Which I was a little shocked by but she gave me her direct phone number and told me I could contact her anytime, which was really nice. I found some of the relaxation exercises that I had learned through the classes sometimes made me relax and calm my body and mind. But it took a lot of practice and only sometimes worked. I decided to explore more into this especially after developing panic attacks. I followed a method off the internet to help my panic attacks and it helped me to control them to a certain degree, along with determination and support from my family. But I found out that there are so many relaxation methods/exercises and breathing techniques to experiment with, which I did. And I use them now to help me to cope a little with the pain and stress. Some are simple mind focus, some are a sort of hypnosis, some are meditation, some are accompanied by music, and some are in a bath, some use colours or images, some use breathing, plus lot of other various techniques mostly involving the mind. It sometimes takes the edge off of the pain and calms my mind and body because although stress doesn’t cause the symptoms it does amplify them. So I try to keep my stress levels as low as possible, which is very hard being like this as each day is full of obstacles and hurdles to overcome. So stress is a certainty, but with relaxation & meditation it helps to reduce my stress.
MY CURRENT PAIN MANAGMENT & COPING SKILLS
*YOGA* ITS GR8 4 THE MIND BODY & SOUL
*WALKING MY DOG ON THE BEACH*
*STRECHING & STRENGTHENING EXERSIZES to tone my muscles around my joints.
*RELAXATION EXERSICES & BREATHING TECNIQUES, calm my mind and body but it takes a lot of practice, and sometimes they take the edge off the pain. They help me to cope with the problems resulted from these conditions and reduce some of my stress. Lots of sites on the internet explain all about how to do it properly or learn by a physiotherapist or a relaxation class. Find what suits you best personally.
*COD LIVER OIL (WITH VITAMIN A & D), I take only in the winter and there are many benefits from taking it. But the main reason is it might help my joints by delaying or even reversing the destruction of joint cartilage and inflammatory pain. It is especially good for people who suffer with osteoarthritis which I have been informed by my doctor that I have a high chance of developing, and evidence has shown up that cod liver oil may delay and prevent joint replacements.
*MY SISTER, she is a great inspiration to me. She has the same things as I do and it’s great to know someone who is going through the same as you. She knows what the pain feels like and how others treat and judge you. She keeps me fighting and I don't know what I'd do without her.
*MY FAMILY, sometimes it must be really hard to live with me, but my family are a great support network. I don’t know how I would cope without them especially my mum. She so understands and knows how to support me best and knows all the right things to say, has great advice and comes to all my appointments with me.
*INTERNET is great as I find lots of information out and great resources too.
*SUPPORT GROUPS & CHAT ROOMS, I currently run an online support group. There are lots of people there who are going through the same as me. It helps me to realise that I am not alone and we give each other support and advice. But I used to go to a support group in person in my area and that helped too, but this is more exhausting and less beneficial to me now, as it helped me more when I was newly diagnosed.
*MY OWN WEBSITE & MY EMAILS, I have created this website which was very therapeutic for me and I get a lot of feedback from others. I get emails sent to me and that’s great to read other people’s stories and I talk to lots of people suffering with these conditions, some who I keep in touch with.
*GOING OUT, this can sometimes depress me when I get home because of all the obstacles and how much worse I feel after, but it is still worth it. Be it for a drink, or shopping, it lifts my spirits and keeps me going and most of all I enjoy it no matter how fatigued or increased pain I have afterwards. I go out when I can and would go out more if my body would let me.
*POEMS, help me express my emotions and feelings in a better way. Some of the things I don’t want to talk about to other people but I can write them down in the form of a poem and it releases some tension. As it is no good to keep things bottled up because the bottle can only fill so high before it overflows.
* MUSIC, is very relaxing and mind distracting for me. But I can’t always play music as it sometimes repeats over in my head and exhausts me more. But when I do listen to music I vary the style as to how I feel. Sometimes I just want to listen to quiet soft music and lie down and relax, other times I want to have the loudest heaviest music on and sing along with it, and sometimes I want to listen to music in between. This helps me to relax, cheers me up, releases a bit of stress, or distracts me.
*CONVERSATION & LAUGHTER, having a joke and conversation with family and friends that is a great up lifter for me. Although conversations do physically exhaust me I still enjoy.
*COMEDY TV SHOWS & FILMS, I watch the friends TV show and other comedy films as these make me laugh and help to distract my mind from the constant pain
*READING, a good book or autobiography distracts my mind but also exhausts from the concentrating.
*HOT BATHS, warm my joints up inside as I am extremely cold and they are very relaxing and calming.
*ELECTRIC BLANKET, keeps me warm, as my joints get very cold.
*SUNBATHING, this is very relaxing and also warms my joints up inside.
LIVING WITH INVISIBLE & MIS-UNDERSTOOD CONDITIONS
I could not cope without the love and support I get from my family. They understand us and are very supportive, especially as I know it must be hard to live with us both sometimes, but their support still continues. They understand to a certain degree as much as anyone who doesn’t have this can do so I know we are very lucky in that respect. But at the beginning in early diagnosis of these conditions our parents did not know much about FMS, HMS or CFS, neither did me or my sister, but they continued supporting us. It is only now since what we have all been through, learned, and experienced together, that they and we fully appreciate, the true nature of these conditions and all the problems that accompany. We are still very close and in a way I suppose suffering like we do had brought us together. We share an unknown monster. Now looking back at what we all have been through in the past 5 or 6 years, it is unbelievable, and before any of this we were totally oblivious to other people’s strife and trauma. We have encountered and still encounter a lot of people some strangers some not, who do not understand no matter what you explain to them. Which I know that they never will fully understand but there behaviour should be better. Some take to expressing this verbally where as others take a more subtle approach like facial expressions both equally as hurtful. And some people even when you do explain to them what is wrong they are listening but not really taking it in. They refuse to believe what is happening and switch off. All of us have had our feelings hurt and no doubt will do too in the future because of the sort of world we live in. There are a few reasons that contribute to why it is so hard for others to understand us:-.
The first is the most obvious the WAY WE LOOK. Commonly referred to amongst sufferers as the “invisibility” aspect.
I will never again judge a book by its cover in any situation, as things are not always what they seem. I know I look healthy and I experience people telling me how well I look all the time. Sat next to a stranger they would never have the faintest idea how I am suffering in pain or what my daily life consists of. And some people who do know me and know what I have been diagnosed with still can’t fathom it out. To them in their eyes I look fine, plus my age doesn’t help matters. They ask “how can she be…she looks too well”. The trouble is we rely on our eyes too much. We believe everything our eyes tell us, things are not always that clear cut and people are too quick to jump to conclusions on what they think they see. When in fact what they are seeing is something totally different and the truth is often hidden. Someone’s exterior is not how they are on the interior and this is the same for me. I try so hard not to let show how I really feel or moan (too much) about what I feel, because that just makes me feel worse and gets me down and the other person too. Plus I haven’t got a choice in the matter; I have got to put up with this for more than likely the rest of my life, so this is my way of dealing with it. I really hate sympathy off people and I guess we are both just that way inclined. It makes me feel like I’m dying or something, and is very uncomfortable for me and the other person involved. I would sooner just try to get on with my life the best way I can. The way I live my life may not be normal in other people’s eyes, but to me it is. It is my normal.
The second thing is that these conditions are NOT HEARD OF. The lack of recognition for FMS, HMS AND CFS is under whelmed.
Only a few people have heard of these conditions and when I have had to tell people what is wrong with me. They just look blank and I end up having to say something like “It is similar to Rheumatoid Arthritis” or “It is a type of arthritis” Just for them to have the slightest clue as to what I am talking about. It is very frustrating and I often feel uncomfortable and I know if they haven’t even heard of what I have there is no chance of them understanding or realising what is wrong with me. So this makes me feel a bit like we are the only ones but I know this is not the case.
The third thing is the NAME of these conditions. The name of them does the symptoms no justice. Fibromyalgia is not such a problem as it is a word on its own and not heard of but definitely with the other two. When people hear the name Hypermobility syndrome they begin to think it’s a good thing. They haven’t heard of it, yet they know the word hyper mobile, and they think its the same thing as hypermobile joints (also known as doubled jointed) But having hypermobile joints (double joints) is a good thing if you don’t have no pain or problems with it then you haven't got the syndrome and you’re the lucky ones. But if like us, you do develop the syndrome then this is probably because you have greater degrees of tissue laxity and fragility which leads to a restricted life. Along with a whole host of problems, limitations, injuries and pains. Other’s have a hard time differentiating between people like us and people who are great ballerinas and gymnasts, which I get a little angry when people suggest it is a good thing because no way is it a good thing. When I was visiting a physiotherapist in reference to my HMS they asked me “That must be good, what party tricks can you do?” I was really upset it is bad enough having comments from ordinary people without professionals who should know better saying them. It made it apparent to me she had no idea about HMS, once again making me feel like it was nothing and that we were the only people with it This portrayal happens all the time, from both professionals and every day people. As for Chronic Fatigue Syndrome that name is a big understatement to how I feel and to the symptoms of this illness. Chronic fatigue syndrome is also known as Myalgic Encephalomyelitis (M.E.) and still lots of sufferers refer to it as that. As the name Chronic Fatigue Syndromes trivialises the condition so much. In fact it used to be nicknamed the “yuppie flu” again suggesting it was nothing, but thankfully that stigma has gone now as cases of people severely affected increased and it became apparent that this is a very disabling condition. However the newer name CFS still does the symptoms no justice as it simply suggests you’re tired all the time, which is just not it. Chronic fatigue syndrome is a very disabling condition causing extreme life altering fatigue which not a lot of people realise. But I do understand that if you don’t have CFS it is hard to imagine fatigue to the severities of what CFS sufferers have it, even if they explain it. Even a normal person who is jetlagged, missed a couple nights sleep, or worked 7 days straight, does not compare to someone with CFS who is continuously fatigued and weak even after 12 hours sleep, not to mention the other symptoms that accompany CFS like poor concentration, forgetfulness, an intense flu like feeling, sore throats, swollen glands & lymph’s, migraines and muscle and joint pain.
The fourth thing is the DIVERSE SEVERITIES. There is such a broad scope of sufferers, some with it very mild and some very severe and debilitating and that goes for all these conditions. Some people with either of these conditions can be slightly effected and live a relatively normal life with only a few changes. But then there are others who have lost a lot, had to change a lot and become severely disabled. So at the minor chance of someone actually having heard of it they automatically begin to compare you to stories they have heard or someone that they know with it, they don’t realise there are different severities. Like someone once said to me that they knew someone with FMS who had improved with some treatment she had tried. They expected the same thing to happen to me. This person didn‘t realise that different people have different degrees and probably didn’t have HMS and CFS too. Plus everyone reacts differently to different types of treatments depending on what causes their condition, and only a slight minority have any kind of improvements or go into remission. Plus the thing she was talking about I had already tried. Which all comes down to their knowledge of these conditions which is minimal at best but hopefully the future will make people more aware and knowledgeable.
All these reasons make it harder for others to understand us, which I fully appreciate but there are still no excuses for some of the attitudes, ignorant behaviour, and abusive comments we have to put up with and fight against. A lot of harsh heartless comments have been made, too many to recollect. But there are a few that stick firmly on my mind from people who know us and people who don’t know us. Like “Are you still a cripple” and “Have you been drinking” along with lots of disbelieving looks and constant questions and having to explain myself. One that sticks in my mind for my sister was “Get out that wheelchair I need it more than you”. Well there have been many more worse situations we have both been in, especially with some Doctors/Physio’s/Occupational Therapists and at Airports/Holidays/ and getting out of a car in a disabled space, or sitting in the only seat when an elderly person is wanting it, but I really don’t want to talk about them or go into detail because it is too upsetting to write about and I’m sure there will be plenty more like this in the future, as I am always being judged for my actions that others can’t see an apparent reason for. I’m sure I’ve had plenty of “lazy, idol, ignorant, comments behind my back too. When people say these horrible or offensive things we can’t help being sensitive as when you have had your lives turned upside down and things ripped away from you and still being ripped away it’s bound to be that way. I now try to shrug them away and “take the high road” as they say, but there are occasions when this is impossible to do and they really hurt my feelings. But I still try and I am a stronger person to what I once was, having to battle for what is rightly mine and stand up for what I have and what I am has made me this way. In fact it has made us all much stronger and closer.
But I do hope that one day Fibromyalgia, Hypermobility Syndrome and Chronic Fatigue Syndrome (M.E) become an accepted and fully recognised part of society. But until then we are battling to live in this non-understanding world the best way we can.
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Having to explain to others what you are like can be quite a headache. But it is also good if you do explain may be some of your symptoms to others and what you now can't do because of them. This will help them reliase some of your problems and maybe be more patient with you. Some people hand out letters (a.k.a. LETTERS TO NORMALS see below) explaining most things. It is your decision if you wish you can print out he letter to normals and modify it how you wish and hand it out to family and friends a.k.a. normals. It depends, letters to normals, are a good thing if your family & friends are having a hard time trying to understand what it is like for you, or/and if your having a hard time explaining.
>CLICK HERE TO READ THE "LETTER TO NORMALS"<
THANKYOU FOR READING
GOODBYE AND GOOD LUCK IN THE FUTURE
my email address is:- daynauk@hotmail.com
(feel free to email me anytime)
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FIBROMYALGIA, HYPERMOBILITY SYNDROME, & CHRONIC FATIGUE SYNDROME / M.E
