A short sad history of ME/CFS

7roland8

So agree - My friend's son has also had it for longer than been well - now in his mid 20s - there is no answer - but fighting it and making more stress is counter-productive.

DanE2010

Mojisola wrote: »

It is hard. My sons have been ill since they were 10/11. They have been sick for longer than they were well and don't actually remember what it was like to feel fit and active.

The only problem is that any stress makes things worse and resenting the illness and hating the loss of your dreams uses energy which makes you feel worse. From our experience - and others in our local support group - acceptance is one of the most important stages in starting to feel better.

while I agree that stress makes things worse and we would do well to just let go and accept it - in theory yes, but thats easier said than done im afraid.

Lying back on the couch and looking at the clouds isnt possible when were in the midst of a financial crisis where its getting even harder to keep your head above water, where you are sick with worry about what the future holds for you in rergards to benefits, work, pensions, healthcare, im not gonna sit back and let the goverment walk all over me, we are ill and would should be treated with abit of dignity, ive not been raised to sit and wait for things to happen, im pro active and I was always told if you want something in life you've got work hard and graft to get it, that mentality directly conflicts with this evil illness, granted I need to take care of myself and not overdo it but in my mind I will not give up and accept defeat, this illness will not beat me, eventually, in the future I will finally get the better of this illness, im not going to sit here and tell myself it has got me and this is all ive got for the rest of my days.

The illness is not only a prison sentence it makes all of these things in life ten times harder.

I am 26 years old and this illness has taken away so much from me when at my age I should be having the time of my life. I have lost a large amount of friends, I cant go out often, my social life is virtually non existent, therefore the chances of me meeting someone and settling down and having children has reduced greatly, it has ruined my career prospects, I was working my way towards promotion but thats gone out the window now, I could go on but you get the jist of it, I want to LIVE my life not watch it pass by, this illness has inprisoned me.

I wish I could sit back and relax and adjust but what life would I have? How would that help me? Id still be lying on my sofa at 65 (if im lucky enough to live that long) thinking to myself "what have I done with my life? and what do I have to show for it?" I refuse to let that happen!

mardatha

Well what good is worrying and fretting doing ? I'm 60 and I've been there. It doesnt work!

Mojisola

DanE2010 wrote: »

The illness is not only a prison sentence it makes all of these things in life ten times harder.

I am 26 years old and this illness has taken away so much from me when at my age I should be having the time of my life. I have lost a large amount of friends, I cant go out often, my social life is virtually non existent, therefore the chances of me meeting someone and settling down and having children has reduced greatly, it has ruined my career prospects, I was working my way towards promotion but thats gone out the window now, I could go on but you get the jist of it, I want to LIVE my life not watch it pass by, this illness has inprisoned me.

I'm completely with you on all this, Dan, and my heart goes out to you.

You are about the same age as my sons. One has managed to recover enough to go to uni, although he's having a very reduced "uni experience", but the other is still affected far too badly to do anything much. The social isolation is awful - lack of friends is bad enough but no chance of a girl friend possibly even worse.

He has no prospects at the moment - no secondary education, no exams, problems with dyslexia, no energy to deal with any problems.

When I was at my worst with ME, both my sons were small and every day was a struggle. I went from being in a very physical job with very active hobbies to being unable to sit up for most of the time. It's awful - your life does disappear and becomes a completely different thing. I think you actually have to grieve for your lost life as you would for a close friend or relative. That allows you to let go and start to rebuild the life you have now. People with ME - or any other serious illness - can't afford to waste energy resenting the changes in their life. I don't think I have "accepted defeat" but I have accepted the new life forced on me, the same as I would have to if I'd been in an accident and ended up in a wheelchair.

mardatha

Thats what I meant Moji, but you said better ! Energy spent fighting and being resentful is energy wasted - and we have none to waste. I suppose it is a process and we all have to go through it. xxx not fun.

7roland8

Hear Hear - by accepting the illness and things 'as they are' - doesn't mean we arn't wnating to get better and have more of a life.

However looking bleakly into the future every day doesn't help - sometimes it helps just to take a day at a time.

I know we all do it from time to time - but it gets you nowhere.

NEH

Mojisola wrote: »

It is hard. My sons have been ill since they were 10/11. They have been sick for longer than they were well and don't actually remember what it was like to feel fit and active.

The only problem is that any stress makes things worse and resenting the illness and hating the loss of your dreams uses energy which makes you feel worse. From our experience - and others in our local support group - acceptance is one of the most important stages in starting to feel better.

I think after having both conditions and going through what i have been through i have reached some kind of acceptance thank you very much I am rather concerned that you are saying if you accept it that will make people being to feel better which implies it has a psychological angle to it. I think the illness comes before any psychological issues and that you may only develop them as a casue of the physical side of the illness and the restrictive side of it.

I was trying to explain it from other people's perspectives....

To feel fustration from time to time, have regrets and miss your life is perfectly normal, we are after all human and if were thought all the time well sod it life will be perfectly alright as it is, everything will be great then that would be a more unusual reaction.....

Why is it a crime to feel sad or angry, yes it doesn't make things better but sometimes with this illness you get those moments doesn't mean that you're somehow not helping yourself....

My mum always told me that ME and Fibro is like going through grief but just like i have lost relatives, grief doesn't go away, it doesn't get easier over time you just learn to manage it better.

and for information i am not the type to give up and dwell i my own misery. I have been to uni twice now and had to give up due to the relapses. I have just potentially lost another course and i have lost countless jobs, social life etc but you know what i keep getting back up again.

Dan you and I sound very alike....It sounds like me that you have a lot else going on in your life and that this is another worry to manage.

Mojisola

I do feel very sad for young people like Dan. I have had something of a life and have worked and travelled before becoming ill.

It must be so disheartening to see life passing you by. Dan, I'm not underestimating the extra difficulties you are experiencing because of your age. I think I would have found it much harder to come to terms with the illness if I had been younger when I'd become ill.

Despite that, I do think you have to save your energy for the fights that are really worth fighting for. You have to get into a kind of zen state - by letting go of your old life and your wishes and hopes, you make room for something else to come into your life.

Mojisola

NEH wrote: »

I think after having both conditions and going through what i have been through i have reached some kind of acceptance thank you very much I am rather concerned that you are saying if you accept it that will make people being to feel better which implies it has a psychological angle to it. I think the illness comes before any psychological issues and that you may only develop them as a casue of the physical side of the illness and the restrictive side of it.

Heavens! I hope people don't take it like that. I think it comes from a very physical cause - when we are upset or stressed, our immune system is lowered - healthy or ill, it affects us all like that. Those of us with any long-term health problems can't afford to load unnecessary stress on ourselves.

I was trying to explain it from other people's perspectives....

To feel fustration from time to time, have regrets and miss your life is perfectly normal, we are after all human and if were thought all the time well sod it life will be perfectly alright as it is, everything will be great then that would be a more unusual reaction.....

Why is it a crime to feel sad or angry, yes it doesn't make things better but sometimes with this illness you get those moments doesn't mean that you're somehow not helping yourself....

My mum always told me that ME and Fibro is like going through grief but just like i have lost relatives, grief doesn't go away, it doesn't get easier over time you just learn to manage it better.

It isn't a crime; it is normal to feel like that. Many people who have lost people dear to them will tell you that grief is just as you describe - you learn to manage it better.

and for information i am not the type to give up and dwell i my own misery. I have been to uni twice now and had to give up due to the relapses. I have just potentially lost another course and i have lost countless jobs, social life etc but you know what i keep getting back up again.

I know lots of people with ME and, apart from a few who have other problems in addition to ME, they are all like you. That's why MEers get so upset at the suggestion that they want to stay ill. They are all fighters and are valiant in their daily lives, coping with the problems this disease causes them.

DanE2010

I think were all in agreement that stress and anger will make you feel worse but perhaps we all explained it in different ways, like NEH and Mojisola have explained it well in parts so if e could just cut and paste some bits together it would come out abit better lol

Its hard to try and explain what your actually trying to say when you have M.E isnt it? What I was trying to get across is that I by no means have lost my fighting spirit and determination but accept that I had to let go of my old life in order to prevent myself going down the slippery slop even further. As it happens last year was my year where I finally wised up to that and had a complete melt down because I was still trying to hold onto my old life, ive completely turned it around now and have let go of that life (hense being sat in watch the X factor while my sisters are hitting the pubs!) its very sad and I do get upset but my health has to come first because its not worth risking getting worse and losing even more than what I have already.......................having said that though I do very much feel this illness is robbing me of the best years of my life and I think it is entirely natural to feel that way, but I dont let it eat me up inside to the point where it makes my condition worse, but at the same time having this illness naturally brings extra worries and stress into your life in regards to money work and benefits so your constantly stuck between a rock and a hard place to a certain extent.

People get this terrible illness at various stages in their life and I guess everyone will have a different perspective on how bad it can mess your life up, but being in my mid twenties I just feel it has really put a spanner in the works, but at the same time im a strong person and have got a very supportive family which I know not everyone is lucky enough to have. I have a mix of emotions but im not sat her bitter, im the enternal optimist, im not naturally a negative person and I have hopes and dreams for my future that I hope I will still achieve, and having goals and aspirations has always given me a purpose in life, I like to be organised, have a plan and work towards it. I fully understand Plan A has gone out the window, but there is always Plan B, C or even D.

At the end of the day none of us want to be ill and hopefully one day our goverment will get off there backsides and sort it out for us, in the meantime il be sat here plotting and planning for my future!

And yes NEH sounds like we are very similar, got the old fighting spirit, im sorry to hear about the uni courses, but dont give up, you will find a way, the time may not be right at the moment (I dont know how id ever have the brain capacity/concentration to do a degree now I dunno how I managed it!) but there will be a time when you can so hold onto that.