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WELCOME TO THE FIBROMYALGIA(FMS), HYPERMOBILITY SYNDROME(HMS) & CHRONIC FATIGUE SYNDROME(CFS)/ MYALGIC ENCEPHALOMYELITIS(ME) SITE
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SUPPORT
SUPPORT is one of the main things that we need when we are suffering with a chronic condition. I hope that through this site we all can communicate and learn how to deal with the pains & problems we suffer every day. Shared support is definately the best way, knowing there are lots of others out their going through the same as you, you will realise that you are not alone. Below you will find resorces on finding support like a chat room, message board, support groups, letter to others, e.t.c:-
SUPPORT FROM LOVED ONES
Having support from your loved ones is definately a crutial coping techinique. Your family and friends need to be understanding and supportive and help you. But also you need to realise that their lives have changed too. The best thing to do is find out as much info you can and pass it on to others so they can read it, it might be helpful fo them and easier for you too. (having to explain is 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 or email letters to help others undertsnd explaining some things about themselves and their conditions on a more personal level. This can be helpful as things sink in alot better if someone reads them for themselves. It is your decision if you wish you can print out the letter I have written below and modify it how you wish and hand it out to your family & friends. Or if you want a more subtle way you could email it them or tell them about this website and let them read it for themselves.
"Letter to Others to try to help them understand"
Having Fibromyalgia, Hypermobility Syndrome and M.E/Chronic Fatigue Syndrome means that many things in my life have changed and a lot of them are invisible to those that don't live with me or know me very well. Unlike having a recognised illness or being hurt in an accident, most people don't understand. And most that think they do know and understand are actually misinformed due to the limited amount of information on these conditions and the false perceptions surrounding them.
So this letter is written in the spirit of informing those who desperately want to understand as it is a very hard thing to wrap your head around if you have it not too mention if you don’t.
I really do understand how hard it is for those who do not have any of these conditions to appreciate the concept and accept the facts so these are the things that I would like you to try to understand about me before you judge me by my false appearance and your pre-conceived ideas about these conditions.
When you see me I may look healthy and well and may look like I am not in pain or maybe I look like I’m not even exhausted. But everyday I am far from it. If you think about it how many people have you met that you have pre-judged on just looking at them. I know I have countless times in the past. But in every aspect of life there are many people who look very different to how they appear to be. In fact I bet you may be one of them. Hasn’t anyone ever pre-judged you? I bet they have. It is human nature, and unless we have faced or experienced something that has made us look differently at people first hand, it will always be this way. But now after reading this hopefully you will know me more so read carefully as even I don’t want to reveal everything, just enough for you to understand. After all nobody wants to be an open book. But I’ll try my best……………….
Please understand Everyday I have to spend most of my day in considerable pain and exhaustion weather you believe it or not it’s a fact. And if you do visit even though I am putting on my bravest face and I do hide my true pains, I still probably don't seem like much fun to be with, however I do try as I'm still me stuck inside this body. I still worry about normal everyday things and care about my family & friends, and I'd still like hearing you talk about yours too. In fact please treat me the same as before I am the same person as I was before I got these conditions. Talk about whatever you want to talk about. I understand that you have pains and problems too, don’t feel you need to shelter them from me or that I have enough of my own. That only makes me feel excluded and I can tell when you look at me with sympathy and upset please don’t I am happy this way, no of course I didn’t want my life to end up this way, no sane person would. But the fact is that I had no choice in the matter. And I gave up trying to figure out why years ago as I will never truly know; it will always be a mystery. It’s not like an unwanted gift I can return so I just try to live with it and be happy when I can. I know it is hard and there are days that it doesn’t always go so smooth but I hope you can do too.
Please understand the difference between "happy" and "healthy". When you've got the flu or tonsillitis you probably feel miserable with it, but I've been ill for years. I can't be miserable all the time, in fact I work hard and have practiced at not being miserable. Part of me dealing with chronic pain is to hide it by distraction. Distracting the brain helps me to deal with some of the pain however this obviously doesn’t make it go away just limit the severity for short spells of time. So when you see me and I look happy it doesn’t mean I’m healthy and when you're talking to me and I sound happy, it simply means I'm happy. That's all. Please don’t analyse it as it doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. I have just learnt to make the most of my time when I can and hide a lot my bad pains & feelings. Snap judgements only result in the wrong conclusions which just lead to me getting upset by wrong accusations causing me stress and depression. Also if I feel down my pain increases as when you feel down it becomes harder to mask some of the pain plus it is an energy zapper, so this increases my fatigue. This also applies to stress so I try to avoid being stressed as much as possible but in my life stress seems to go hand in hand with my illness and the problems they bring. As with everybody in the world stress & depression drags you down but I guess for me that down or stress directly affects my symptoms.
Please understand that all my conditions are variable and can affect people very differently. It's quite possible for some people to be able to walk to the shop and back and even work and drive, whilst others cannot walk at all and spend 99percent of their time in bed. Please don’t get too upset if you notice that I’ve gotten worse and please don’t get too excited if you notice that I’ve improved. This will only make me feel worse and under pressure either way. Please do not bombard me with questions of “Why are they better than you “ or “Why are they worse than you” I do not know I do not have the answers of this if anyone did I would know. Please try not to compare me to others although I know it is easily done but it is just that no two people are the same even with these conditions. And one thing might work for someone that doesn’t work for someone else
Please understand that being able to do something one hour doesn’t mean that I can do that same thing the next hour. My can’s and cant’s do vary from hour to hour and even day to day. Which I know is even hard for me to understand. With a lot of diseases you either can move freely or you’re paralysed, with this one it gets more confusing. One time you see me I may be able to stand up for an hour but then the next time I may not be able to stand up for 5 minutes without flopping and needing a seat. This applies to most things in my life. One time you see me I may not be able to string a sentence together or get my words jumbled because I’m so exhausted but then there are other times you won’t be able to shut me up. One time I may be able to walk a long way the next I may not be able to walk to the top of the garden. I cannot explain this it is just the way I am and after years of trying to work out why I accept that I am just made this way. I try to take things for what they are and go with the flow I hope you can do too.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. I am not lazy and I feel like I am very active as what I do for me is a lot. Your life may be very different to mine as I have had to adapt mine to live the easiest and best way I can with what I have. But just because it is different does not mean it is wrong. Telling me what I need is not the answer. Telling me I need to see a dr or a specialist, that I need to gain (or loose) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, I’m sure you know that I would be doing them! It’s simply a matter of been there done that I have worked with doctors, specialists and physical therapist in the past and am already doing the exercise and management programme that I am suppose to do. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. I do appreciate the fact that you care and only want the best for me. I’m sorry I sometimes take offence it's because I have had almost every single person suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself suffer worse, not better. If there was something that cured, or even helped, people like me then we'd know about it, believe me if something worked we would know. All I’ve learned to do is manage not to cure. If after reading that, you still want to suggest a cure then I do appreciate the fact that you care, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. You may look at this as giving up but I am willing to try many things and always keep up to date on various treatments and management techniques. However it is about accepting it too, as being tied up in hopeless dream cures causes me more fatigue and pain, not to mention disappointment. I have now learned to accept and try to cope with various things I have learned to live my life and not waste my life.
Please understand that some statements said to me hurt and I am very sensitive to them. I do try not to be so hurt, but this is my life and it is very personal as I have to work very hard everyday just to live in it. Some statements made like "You just need to push yourself more, exercise harder..." Feel like a slap in the face. I do realise that it is just people who don’t know me or do not understand about these conditions but still it does feel very hurtful. People are so misinformed about all these conditions and because they are so obvious to me as I am living them I sometimes forget that of others. I know it doesn’t excuse their behaviour but I do understand it. The thing with fibromyalgia is it deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, often far more damage than good is done in physical activity and could result in recovery time in days or weeks or months from a single activity. And with hypermobile joints there are many simple movements that put strain on the joints and lead to further complications and injuries. And with the M.E (a.k.a Chronic Fatigue Syndrome) means any type of exercise will seriously exhaust me and leave me worse off than before, which may take days to recover from. So this combination means that overdoing it leads to consequences I have to endeavour which believe me I have learned the hard way.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten for whatever reason. My body controls me most of the time and it does not forgive. I have had to get in sync with my body fighting it makes me feel 10 times worse. I have to pick and choose the things I do as I can't do alot so I prioritise things so please forgive me in sometimes being selfish, although it is truly not my fault. However I object to being totally selfish I will do some things if I can to help and besides there are plenty of other things I can do, and plenty of other ways I can help, it just takes a few alterations and going at a different slower pace. But this does mean change for not just me and I am sorry about that. As this does not just affect me but those like you and others around me too.
In many ways I do depend on you - people who are not ill - I may need you to help me with the shopping, cooking & cleaning. I may need you to take me out, and to accompany me to dr and specialists for support. I do need you on a different level too ... you're my link to the outside world and you offer me advice and moral support, and I thank you so much for that. And although I am the one with these conditions the ripple effects that are caused by these conditions affect you directly to..
So as well as your help and support as much as it's possible, I need you to understand me.
So thank you so much for taking the time to read this letter I have wrote and from now I hope you understand me a little better and also I’m asking you to please take a deeper look in every aspect of everyone you meet and not to pre-judge someone on how they look or an action that you think you can explain. As we all have done in some time in our life.
I wrote this letter to help others understand more about these conditions on a more personal level. But please feel free to edit this to your own life or to save & print this letter and give to whoever you wish. It may help them understand you a little more.
FMS & HMS & CFS/ME Message Board
This is a place where you can communicate with others, using messages. Just read others messages, or ask others questions, or even answer questions. Learn more about others experiences through their relationship with these painful condition(s).
CHAT TO OTHERS
COMMUNICATION helps to relieve some of the built up emotions and helps us to deal and accept our problems better. Having someone who we can express all our feelings to and who will listen to is a definate must have support system. There are different ways that you can do this or all of them if you find it is beneficial to you.
>Some people prefer to chat to people who they know and who knows them best such as their friends and families.
>Some prefer to chat with others who are suffering the same or similar to them. This way you can be sure that your being understood and identify with others, to know you are not alone can be a big relief for some sufferers. You can do this by face to face such as a support group (see below) or non-face to face such as online through the internet, in either a chat room, or discussion board.
>Some prefer a one to one conversation with a trained proffessional such as a councelors.
Below you can enter my live FMS HMS & CFS chat room anytime of day. Although there is scheduled chat to enable more people in there at once. It is really easy to use, its completely free of charge, you dont have to register and bother with passwords and it loads really quickly. But please remember the people in these chatrooms are genuine sufferers or families and friends of sufferers of these conditions. So NO ABUSE or OFFENSIVE behaviour will be tolerated. If you do experience any please contact me.
>CHAT ROOM<
SCHEDULED CHAT:- (this way there will be others in the chat room)
MONDAYS 10pm-midnight (uk time)
THURSDAYS 3pm-5pm (uk time)
SUPPORT GROUPS
Locate your local support group and join. It will keep you upto date on all related events and research being done in your area. Also like mentioned above some people prefer to talk to other sufferers face to face, if that is the case then a support group is definately for you. there are different types of support groups that meet up once or twice a month at a hospital or some kind of hall, and share their experiences, swap symptoms, stories, treatments, and some have guest speakers on related specific topics but all are dedicated to making your condition more aware and better known. And basically it is just great to have somewhere to meet others who are going through similar things to yourselves, because there are many times when you really do feel like your the only one.
CLICK THE IMAGE ABOVE TO FIND A SUPPORT GROUP IN YOUR AREA
JOIN MY fmshmscfs EMAIL GROUP BELOW!!!!
This support group is mainly to help others share their experiences and problems with people that DO understand and know what it is like to suffer with FMS and/or HMS or/and CFS(ME). The good thing about email & online support groups is that you can communicate non face to face, and you will get support and advice from others who may be going through similar to you.
UNFORTUNATELY WE ALL HAVE THESE DEBILITATING CONDITIONS IN COMMON.
As a member(which is obviously free to join)you will recieve emails form all other members, and you can send emails yourself(which will automatically go to all members) You may want to ask questions, offer others advise, talk about treatments, diagnosis's, people who don't understand e.t.c, or just to let off some steam, remember that YOU CAN and you will probably feel better afterwards for doing so. As a member you can also read members own bio's and submit a bit about youself in the files menu, invite members to join, promote this site on your own website, create or take part in polls(mini-surveys), upload and share files and photos, chat online(a smiley face by the members name indicates that they are online which means that you can invite them to chat), add and share related dates & events on the online calendar. Only members have access to all these features, so things are kept private. Members are only people who have FMS, and/or HMS, and/or CFS, (or possibly carers/family&friends of sufferers who want to learn more)
Click to subscribe to fmshmscfs
DOCTORS (G.P's & SPECIALISTS)
Make sure you have a knowledgable & understanding G.P who knows all about the conditions/diseases you are suffering with. Your doctors are your link to things you might need, such as medication, information, referrals, help with benefits, and general help advice and support. You must have a good relationship with your doctor if not find one who is more supportive, you can do without the added stress of a non-supportive, non-caring or non-undersanding DR.
CLICK THE IMAGE ABOVE TO FIND A GP/SPECIALIST IN YOUR AREA
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FIBROMYALGIA, HYPERMOBILITY SYNDROME & CHRONIC FATIGUE SYNDROME / M.E
