Hidden8 years ago

Hi Mark,

The simple answer is life, you fight for life, for the opportunity to watch your grandson grow The best advice I can offer is to take it one day at a time and if you get through that then you can get through the next. Don't look too far ahead as sometimes it can make you feel worse. Make a small goal for yourself and when you achieve it praise yourself and set another. The goal could be just getting up, getting dressed and walking round the room a few times

sasha128 years ago

Hi Mark. I hear your depression. I understand. My diagnosis came 22 years ago. My pain and fatigue have varied greatly over the years. Is it possible to dial your exercise therapy back? Whatever you did was too much *for you*. Finding the sweet spot where activity makes you feel better, not worse, is a big challenge, but so worth it.

rosewine8 years ago

Mark my heart goes out to you. I think if we all are absolutely honest we have felt this way at some time or another. The physio/acupuncturist was saying only yesterday to me that fibro is the thing that is diagnosed when everything else is looked at and nothing else remains as there is no blood test that can diagnose it. I think that makes alot of us feel in some way we are frauds and because something does not show up in a test there is nothing wrong with us and therefore we should be well. This can easily eat away at your mind and you start to question yourself.

I was only saying to my OH yesterday that I would hate to be like this living on my own with no support (I only have him) as sometimes you just need to talk to someone about it. I have friends but they or OH's family don;t visit and I have to go to them. Being on your own too much can make things worse so Tiredalot's advice about taking every day as it comes is good as that is how I know cope with my life.

Even though you live on your own you have a daughter and grandson to live for. I am sure she understands why you can;t help her out at this moment. This illness can cause what we call flares and these can last from a day to several weeks to months when all the symptoms seem to be against us and we just feel as though getting out of bed in the morning is too high a mountain to climb and then one day the symptoms ease to manageable and we find renewed hope for the future.

Try as Tiredalot says to get a small triump into each day. You might not always succeed but the very act of trying will lift you. Get some sort of hobby even if it is only feeding the birds and watching their antics, or reading, listening to music, watching a funny film anything to take your mind off the pain and exhaustion but try to be gentle with yourself and not get angry if it is a bad day and you have failures as we can tend to be our own worse enemies.

See if there is a Pain Clinic or Pain Management course you can go on as that could be a support network for you to turn to. With the hydrothereapy it is easy to push yourself too hard as the water seems to make exercise easier but you pay for it the next day. Try and take the exercises more slowly and have a little break in between each one so the body has time to recover. Stop before you feel exhausted and I think you will get far more out of the sessions. It is your bodies way of saying it isn't used to the exercise and has had enough.

I actually think you are very brave as you have taken the first step by posting how you feel and hopefully the kind people on this site can be there to support you. Soft hugs going your way.x

lou608 years ago

I would ask what was the motive behind your friend sending the video, was there a suggestion that you can heal yourself, believe me I have tried many things over the years and nothing works better than learning your own limitations and pacing activity. You can set small goals to aim for but even these may require adjustment as you may not feel the same day to day. xx

Hidden8 years ago

Thank you all for your replies and support. The video was not just for me. It was sent to everyone on our friends list.

Part of the reason I made this post is because I can't work and I'm almost out of money. I'm waiting and hoping I will get disability but that could take months, if I'm approved. The hard part was on Thusday I spent $500.00 US dollars for a evaluation that my lawyer suggested so to help prove my disability case. I took one about a year ago and this was almost the same but I realized how far I had fallen from my last test. My mind just could not function like it used to.

I'm trying to take it day by day but I have no security and don't know what to do when I run out of money. My family knows my situation but none has offered to take me in.

If I had the security knowing that I may not lose my house, then I would not be so worried. You see it's not just the Frbro, it's my entire life that is uncertain.

My only choice is to take it one day at a time and pray it will all somehow workout.

maxwellous8 years ago

Please stay with us on this wonderful site, you will have loads of support, & will laugh at some of the humour too. Its not all about complaining about our pains but listening to others, who can be worse off, but you maybe able to help other sufferers yourself, & it will help you feel good about yourself too. Keep tuning in mark5177, your not alone. Smiles & hope to you, xx

Hidden in reply to maxwellous8 years ago

I'll stay with you as long as I can afford my phone or Internet.

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Hidden8 years ago

Some great thoughts and advice above. I'd just like to add my support and also the suggestion that you talk to your gp re depression and counselling. It can be immensely useful to have someone to talk to face to face that can give you tools to help.

Hidden in reply to Hidden8 years ago

I'd love to see a theripist, but could not afford one and could not get assistance because I had too many access. Now that I'm almost broke I'm looking into getting some government help.

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budgiefriend8 years ago

Hello, Mark, I am in a similar situation, alone and struggling with Fibromyalgia and possible M.E. I also find it discouraging when people with other disabilities and illnesses are held up as examples for all disabled or sick people. We have our own different kinds of symptoms and challenges. It's not fair or rational to suppose that because some are able to overcome such extreme difficulties, that means not only all of us can, but that IF WE DON'T it means we don't want to get well, or that we are faking, or whatever.

Instead of people who claim they recovered from Fibromyalgia (when most of us doubt that is possible and think maybe they never had it to begin with, since it is incurable), we need more advocacy; more lifelines for doctors who treat us with respect and dignity, who believe that it is their job to educate themselves and work with us little by little to alleviate the symptoms as much as possible.

Also should willingly provide proper documentation in detail when asked to do so for disability claims, etc. If we had support like that from doctors, I think our families and friends and communities would slowly begin to take notice and not see us in a bad way. A doctor could even encourage us to bring a doubting family member with us to the surgery so they could tell that person briefly that this is a real and serious illness and that we suffer real, often very debilitating pain.

I hope you can find a way to see joy and pleasure in whatever you do have. We don't have any assurances about the future, and we can't change the past. I have gradually been able to find myself in a happy place despite my condition having got a lot worse.

I did it by allowing myself time to grieve for all I lost, including my hopes and dreams for the future. Then I started to pay more attention to the things I love and enjoy. Little things like that morning cup of tea or coffee (even if it's decaf) or fresh berries, or the feel of a nice clean crisp sheet under me and comfy nightie.

If you are gentle with yourself and don't blame, push, or demand that you change, I think you can find a happy place inside that will sustain you. It's a challenge, to be sure, but that does help.

Hidden in reply to budgiefriend8 years ago

Thank you for your kind advice. It hit me kind of hard when you said that you had to grief over the things you lost. I guess I have never looked at it that way. I have only been suffering from Fibro for about a year and a half. I still have dreams and plans for the future, but the reality is I will never get to do any of them. The hard part is being alone and I'm pretty sure my money will run out before I get any disability. So I don't where I will go. I hear from my family once or twice a month. Only a text from my daughter. My brother does call but when he ask me how I'm doing all I can do is complain, so I told him to call less because no one want to always hear a person complain. I feel like none of my family supports me. They know my financial situation but no one has even said to me not to worry, we will deal with that if it happends with regard to finding a place to live. All I get is silence.

I could go on but I feel I should stop now. I read your second post and will check if there are any charity's that might help. We go have a Fibro club here where I live (Houston TX) but no one shows up at the meetings.

Thanks again.

Mark

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budgiefriend8 years ago

There may be a charity where you could get some helpful and kind counselling to help you sort out possibilities and options. They can provide you with links and even maybe make a phone call for you to see if there are some other support avenues you have not heard about. In the UK, we have a few excellent disability charities, and also some general advocacy ones which help many people. Don't stop looking for help. I think there will be something somewhere that will be useful to you, and probably won't cost you much if any money. Even if you run out of money or transport to get to one, don't be afraid to ask someone for the money to get there and have an appointment. I've been in a situation where I had nothing at all, and I did find some good options through people who knew other people (within the various advocacy and charity organisations). Don't give up, as believe it or not, there are a lot of people in this world who would do a lot to get you from where you are to a better place... It's a bit like hitch-hiking. You may not find a ride for the whole distance, but you could get a few miles further down the road and in the process be encouraged and uplifted by some human kindness.

TheAuthor8 years ago

I am so sorry to read that you are struggling so much with your pain, and I sincerely hope that you can find some resolution and relief to the issue. I understand your post completely as at times it feels that Fibro can remove hope from your life.

Good luck

Ken

budgiefriend8 years ago

Mark, PLEASE don't take my own experience and story to mean that yours will be the same. Some people get a lot better with treatment and with time. I did not have proper treatment, and I continually pushed myself to get better because others encouraged me to do that. You must have hopes and dreams, but for the present moment, I would say that it is better to let yourself feel your feelings and be kind to yourself. You do not know what is up ahead. You must just try to live each day as well as you can without too many expectations when you are ill. That's good advice for anyone with any illness. One takes care of the body first, and tries to take care of the spirit too. The things you are feeling about negative and unsupportive reactions from your family/friends are very upsetting. But they are your honest feelings, and many of us have experienced similar or worse. It is very lonely to be treated that way. It hurts. We are with you and we are so sorry to hear of someone else being treated this way. Just know that their reactions do NOT mean you are lazy or a bad person. There will be some people who will be kind and supportive. Try to find them and try to give to others as well. When you are sick, you can do this in small ways.... to anyone you meet with a smile and a sincere "How are you?" It will make you feel better inside yourself. Take courage and I send you a hug.