CFS /ME and on my own.

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Hi, I'm not looking for sympathy! I have ME & RA with all the symptoms ever listed for 23 years. I have been off sick for 8 months now having reduced my hours over the last 2 years. I have no help on a daily basis and therefore I cope with everything (shopping, cleaning, gardening) as and when I can. I struggle more with cognitive stuff than physical stuff, but suffer with pain days later. Flare ups usually are stress related. I can usually be up and about for 5 hours a day including rest periods.

Does the fact that I cope mean I am not so ill or does everyone else just do what they have to do as well? How do other people on their own cope?

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    Hi Sellins, I have suffered with chronic fatigue for most of my adult life and have to say one of the things that makes me the most angry is how people like us are expected to assess how ill we are by what we manage to do.  

    Please don't think of it in the way that you are coping so cannot be ill, but that in the way that you are ill and still cope - that just makes you a strong and determined person.  The last 12 years were the worst for me, for 10 of those years I managed to carry on working, but literally dragged myself out of bed and dealt with it.  For the last 2 years I just couldnt do it anymore and it's not necessarily that I physically felt worse but there is only so long you can go on for without changing what you do on a daily basis.  People who are in the position like you, cope because thats what you have to do to get by.  It angers me when people ask "well you say you are tired but you manage to do blah... blah... and blah".  but would they dream of saying to a new mum "well you say you are tired but you still manage to look after your baby, so can you really feel that bad?" of course they wouldn't - it's just accepted that new mums are drained cause anyone who is a parent or child carer knows full well how draining it can be. But try and get anyone to understand that having ME is constantly draining and feels (in my experience anyway, don't want to put words in your mouth) like constantly coming down with a virus, it's just not the same as being worn down after the end of a long day.  If one more doctor tells me "we all get tired sometimes" I may just scream.  I just try to laugh it off these days when I get comments like that, but it's really not funny as you know (and yes cause I can still laugh people think there is nothing wrong with me - its truly mind boggling the way some people think).  So you can rest assured it's not in your head, you're just determined to live a normal a life as you possibly can.  We are constantly told to pace ourselves and whilst in all fairness what can they tell us when no-one has all the answers, would anyone else accept that 5 hours a day of doing things was good enough, of course they wouldn't.  You may not be looking for sympathy but as a longterm sufferer myself you certainly have mine!  At least recent research is starting to look positive and have decided there are definite biological factors involved smile  frustrating knowing we will just have to wait and see what happens from here but its better than being in the position we were previously where people were just considered not to be coping - that's still going on today to some degree I know but hopefully thats all about to get stamped out.  

    I've found sleeping elevated seems to help to a degree (by no means a cure but have more wakefulness than when i don't do it, although still quite limited on a daily basis compared to a normal person) and have elevated the head end of my bed by about 6 inches.  It won't work for everyone im sure but if it helps even just one more person that reads this then it was worth mentioning.  I think the doctors think its all in my head that it helps, but at the end of the day even if they are right it still helps so I will keep doing it.  

    Good luck and remember, think of anyone with any reason to feel drained whether it's having children or being ill with a recognised illness, people cope with all sorts of situations, because thats what they have to do, it does not mean they are not affected by what is happening, it's just what they have to do cause they have no other choice, so instead of doubting whether there is anything wrong with you just give yourself credit for being strong and determined smile

    as for how to cope, i guess everyones answers will be different. I still get days where I find it hard to accept its happening, other days I think i'd rather it was happening to me than someone else, cause I wouldn't wish this on my worst enemy.  But the first step reading above I think should be to forget what other people around you are thinking and saying and accept that you are ill, you are allowed to call it an illness and whenever you doubt that cause no-one can see whats wrong with you just ask yourself that question again - who else do you know would accept that 5 hours a day is good enough?  (especially if those hours are spent managing to cope rather than actually feeling good).  It's not much but I hope it helps even just a little.

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    • Posted

      I salute everyone who manages. The cost is enormous. The ailment real, all too real. Recovery for a person alone must be so much more difficult than for a well supported sufferer as I was.
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    • Posted

      Thank you for taking the time to write such a detailed and encouraging reply. You have given me a new way of looking at this which is invaluable to me.
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    • Posted

      I forgot to add on a more practical scale diet wise i found a high protein and good fats, low carb helpful but again far from a cure and oddly enough I still feel better sometimes after a day of eating junk food which is a little strange, but i imagine by now Sellins you have probably tried all the diets going.

      Totally agree with you georgeGG, have to admit I am luckier these days with support but was alone with it for many years so really do feel for Sellins - sounds like a total trooper!

       

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    • Posted

      you're more than welcome, I've had a bad few weeks myself so was reminded at how bad it can feel at its very worst, so when I have better days like today quite honestly people find it hard to shut me up about it, but i'm determined to keep stubborn and shouting about it until the answers are out there, keep your chin up, they are closer than they have ever been to getting the answers now smile
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    • Posted

      Hope you start to feel better soon. Keep shouting about it. I think if there was less ignorance and misinformation we would all be a little bit better.
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  • Posted

    I think that being on my own is one of the primary reasons I am having some success dealing with this condition. When there is no one to help, you force yourself to do the urgent stuff and then gradually incorporate in other tasks as you feel capable, its part of the pacing process.

    I use to really suffer with the cognitive stuff and I still find now that when I do work, if I get a day that is mentally tiring, that affects me far more than a workout in the garden.

    Does it matter whether you are very ill, ill or slightly ill, the important fact is that you are not functioning normally and therefore have a health condition.

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    • Posted

      Hi, thanks, I think your last point is a very good one. I suppose because I don't know anyone who is (and I have never been) long term confined to bed, I wonder if I have just lost the will to fight it rather than got worse. How do people who are housebound cope if they are on their own.
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  • Posted

    There is certainly a continuum of illness with ME/CFS. I'm coping as best I can but can't begin to do the stuff you do. I am pretty much housebound and get fatigues just walking across a room. I get fatigued after showering and have to lie down. I couldn't begin to do any of the tasks you mention, like shopping or gardening. 
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    • Posted

      Hi Jackie, thanks for taking the time to reply. I hope you don't mind if I ask how you do cope? I have got worse over the years probably due to age and stress. I have had single days of crippling fatigue and pain, but not long term just constant. I need to decide if I should go back to work or accept that I have given everything I can.
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    • Posted

      One way I cope is by practicing mindfulness/meditation. I took a free 6-week course online (Google "Palouse Mindfulness Based Stress Reduction"). This course is sponsored by the University of Massachusetes School of medicine and is completely secular. It was set up by Jon Kabat-Zinn, who is widely respected in the filed of meditation. I've found that if I can stay in the moment, I'm much happier. I take it real easy and get a lot of rest. I eat healthy. If you're ill, going back to work has to be very carefully considered, as it can cause a relapse and worsening symptoms. Always err on the side of being careful.
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    • Posted

      I am sure Jackie is right. It takes constant care over effort, diet and environment to maintain our recovery. The details are personal and to some extent unique. Each of us has to be our own active expert for the rest of our days.
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  • Posted

    Hi Sellins-I have been suffering from CFS for the last 4-5 years and you have your up and down days, at the moment I'm having those down moments right now. I have had full time work that is shift based which was extreamly difficult for me. I use to drag myself to work because I didn't want to be identified as being ill, and wanted to be normal just like everyone else. I would find myself delaying getting out of bed and going into work late because my back use to be so stiff and painful. I would sleep for more than 10hours but the sleep was not enough. Towards the end I was coming to a point where I was getting depressed and emotionally drained. You can force yourself to get on with things but it all catches up in the end and makes things worse than it already is. I would take far more sick days as some days I could not cope with work and the pain. Stress is a major factor in making my symptoms worse and it's difficult to juggle life and the illness. I'm seeing all the specialist and a pain management team around May, so I'm hoping to develop ways in which to balance everything and help me cope. I still don't know what works for me. Too much rest makes me ill  and too much physical activity also makes me ill. My husband sometimes may feel I'm lazy and I'm not helping myself but it can be very difficult for me to get my clothes out, iron and putting my clothes on extreamly exhausting sad.

     I'm not sure if you have ever been to theses pain management teams but I was told they do help. What you are doing is good as you have coped with it for 23 years and have managed a lot, don't give your self a hard time as everyone is different. Also do not take too many things on and don't always listen to others as they will not always understand what you are going through. I always believe you can only truly know how it feels when you are going through a situation yourself. 

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