Can I ask the community of M.E sufferers, how do other people live with this desease.

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I'm having trouble knowing how to live with this condition. I do to much and then crash,or I do absolutely nothing and then feel guilty,was I really ill? How do other people cope?

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  • Posted

    Hi Carol, it's very hard to live with. I also crash after doing too much. I am not good at pacing myself and though I know that I should take regular rests during the day BEFORE getting too tired, I never do and I find it hard to sleep at night as I am always 'wired but tired'. I don't know what to advise you as I don't take my own advice! Hopefully one day I will as it is key to dealing with this horrible condition. Have you had any helpful advice from the medical profession. How old are you and do you work? I am 61 and can't work now sadly, which I really miss as I am a very active person normally, or at least I was! Take care x

     

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  • Posted

    Wearing a heart monitor can help avoid crashes. There are now inexpensive models you can wear on your wrist. By avoiding the high heart rates, you may be able to avoid the crash.
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  • Posted

    Hi ive had me my whole adult life (20years in total) the best advise i can give is you must accept your limitations rest wen you need to! I still crash cause i do too much but its learning what is worth the crash like its not worth doing the hoovering if your pushing yourself but if your seeing a friend that might be worth crashing. You also hav to remember your normal is now completly different to a healthy persons normal. You cant compare yourself to how you used to be you have to accept your ill or you will forever be fighting the illness and it will keep hurting you. Accept it and you find how to live with it.  
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  • Posted

    I spent every hour of my spare time while I was feeling well enough researching why I was feeling this way. It took 7 months to realize it was hemochromatosis causing all of my suffering with a ferritin level over 500. I think 2 diseases that a lot of doctors overlook are Hemochromatosis and Celiac disease. honestly I feel like cfs/me is just name for a list of symptoms when a doctor is unable to identify the cause.
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  • Posted

    I'm the same! I push myself to do too much, crash then feel guilty for having to rest and do nothing. I think a lot of people with this illness had busy lives before and aren't used to doing nothing which makes it more difficult to deal with. The worst thing is people assume people with this condition are just lazy which couldn't be further from the truth. I've been ill for over 20 years now and still feel guilty that I'm unable to work now and have to ask people to help me with things sometimes which I hate as I was always a really independent person. I know we have nothing to feel guilty about as it's not our faults we're ill but it's still not easy to deal with.   

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  • Posted

    Hi there Carol I totally understand your condition as I’ve had this for 20 years at the beginning of my journey with M.E I find it so incredibly hard and felt like it would never get any better for me .... if I had a better morning or day I did everything just normal stuff house work etc etc but then went beyond and that’s when I knew I couldn’t keep pushing anymore ... my head sometimes would say push my body said different and vice versa but it just got worse to the point I haven’t worked for years now and realise after researching I had to listen to my body not my head .... because with a good healthy diet n lots of rest ...even when u get a good couple hours small things like doing some therapeutic that you love not stressful is your moment or window of happiness .... it can be achieved if you Act wisely don’t push and if your fortunate enough to be on benefits..., Acceptance n going with it is half the battle 

    I hope I don’t sound patronising but I learned the hardest by pushing to much at the beginning 

    Hope something here helps 

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  • Posted

    Hey Carol,

    Everyone is different and will, therefore, have their own coping strategies. For me the biggest learning curve was actually psychological. Learning to accept and even embrace the changes to my life made such a huge difference to how I live my life. I felt that I couldn't make plans because I will probably have to cancel them. I felt guilty that I couldn't do housework properly. I believed other people when they said I was faking or being lazy because sometimes I could do things and other times I couldn't. I don't listen to any of those things anymore. I make plans and am fully prepared to cancel them (including appointments). I do the housework that I can when I can, prioritising what needs doing most that I can do at that time. I accept that just because I can do something one moment there is no guarantee that I can do it in the next moment.

    Additionally, I would advise building a good support network and/or joining support groups like this one and the ME Society. This will give you access to some of the better research that's out there as well as other people with their own conditions. I've also found advocacy groups an invaluable resource when looking at how to get around and what support services are in your area.

    Listen to your body and do what you feel is right at the time. Only you know whether you can and/or should do something. Unfortunately this may be a little trial and error.

    I hope this helps you.

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    • Posted

      Hi there it’s so difficult and very hard to constantly deal with daily challenges and that’s just on how your feeling let alone anything else.... so true what Carole said .... people think your lazy however my friends (you do loose sadly friends) as the ones with me now just say I’m a totally different person .... a shadow but they see the difference..., I’ve lost family over this .... you DEFINITELY have to cut off anyone or anything that has a negative impact on your wellbeing .... 

      you need support emotionally n people around who say it’s ok .... ok to just be who you are until the sun comes out again.... and it does !!!! Little things when u can like a coffee with someone who understands or just sitting in a beautiful place and watching others ..... I’ve coped by trying to be positive about the nice things n find happy places mentally or by going to them park .... sea..... garden.., 

      ACCEPTANCE is the hardest thing but once you do .... u let go of something! 

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    • Posted

      Great advice Helen, I need to take a leaf out of your book as I am constantly battling with accepting the condition and always overdoing it when I'm a bit more energetic, which causes me to crash and go round in circles! 

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    • Posted

      PACE yourself u will adjust soon as you learn better do a little and often 

      Than too much overdo it and pay with great cost 

      Old saying 

      Better to be a Live Dog than a Dead Lion ! 

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    • Posted

      That seems to be a recurring theme for many people I've spoken with. I was diagnosed at 20 and before becoming ill was a real over achiever. I was definately in the camp of right lets get this thing beaten and get on with my life. When that didn't happen I became very angry with everything and what I wasn't angry with I was jealous of (i.e everyone I knew being able to get on with their lives). It took me a long time to come to terms with everything in a positive way (rather than flitting between angry and giving up). It is a gradual process, but I believe an important one. I'm not saying it won't be challenging but I am saying it's really changed my life because now, for the most part, I am happy with what I can do now and not constantly looking at what I can no longer do.

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  • Posted

    Hello Carol

    I myself do not suffer from this disease but my wife does so i will give you my best advice i have in the hope that it helps you at least a little bit. My wife like you crashes if she tries too hard or if she does nothing she felt guilty and i`ll tell you the same thing i told her. 

    You have absolutely nothing at all to feel guilty about as it is this horrible disease that is imposing these limitations upon yourself and I know for a fact that you yourself are not choosing to do nothing!. You need to find a new level of limitations of what you can do before you start crashing and need to stick to that limit, If that means you simply cannot manage to do anything then simply do not do anything.

    Set yourself small goals even if it is as simple as walking from one room to another I know that sounds small but i`ts not where this disease is concerned. And when you have achieved a small goal simply reward yourself with some rest to read a book or watch tv or something that relaxes you. 

    Keep on with this until you have found your own personal limit. I hope at least some of this reply helped in some way and sorry you have to live with this horrible condition.

    Kind regards 

    Stu

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  • Posted

    I've suffered with M.E. for 24 years.

    I live in hope of a cure but sadly I don't think I will see one in my life time.

    Coming to terms with the condition and realising you have to work hard at finding something that works for you as the doctors don't really have a clue on what works and what is a waste of time and effort.

    I found staying positive helps.

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