Really struggling at the moment

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I have had ME for 2 years now, it just doesn't seem to get any easier. I'm better at pacing myself, recognising when I've had enough etc, but I am so fed up with feeling like this. I feel like half a person, and can't help thinking of who I was 2 years ago. Sitting at home by myself day after day is so isolating, but I don't have the energy to socialise, so what do I do ?  I feel trapped in a body that looks like mine, but isn't me. My GP has me on venal faxing and amatriptoline

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  • Posted

    Can you think of anything positive you have gained in anyway from having m.e.?
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    • Posted

      I can't. I'm just able to do less... anything good I've done since falling ill I'd have been able to do more easily previously.
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  • Posted

    The reality is you have no choice . 

    You have this illness for a set time and then you recover. 

    When you are recovered and you look back at your years of illness what will you have learnt achieved . 

    Maybe qualities ... Patience, endurance.

    maybe appreciation of life and health .

    strength of character to have got through some dark days.

    maybe you may of totally re thought your life and what you want as your goals .

    try to jump in time forward . 

    Out of even the toughest times little gems appear. 

    Coal turns into diamond under extreme pressure. 

    You will recover and one day all this will be a memory ... smile 

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    • Posted

      Are you fully recovered sally? 

      How long did you have cfs and did leave overnight?

      You are one of the few people I have heard recovered.

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    • Posted

      No Greg I am a Carer. But my first husband had m.e. For 7 years he was bedridden the first year couldn't go out of house . My children were 5 and 7 and then for 4 years he was severe improving after 6 years he was back to part time work . After 7 years total recovery. He was determined to recover I didn't think he ever would. . He had the mind set that good comes out of everything. Sadly my marriage ended after 20 years ..I am Now married again my present husband has it not as severe but he is unable to work sleeps in the afternoons only has energy for a couple of hours in the morning. He refused to acknowledge he had fatigue for the first two years as he didn't want me to have to cope with it again. He said it was burn out, depression , allergy etc . Now he has accepted he has CFS and is seeing a specialist he is recovering. I know he will recover . I have many friends ( which you meet when you have family with m.e,) and they all recovered some took 2 years some 5 years some longer ... But it is the toughest illness to get your head round... What causes it ????? Don't know really. What cures it ??? It just leaves as it came .. In years to come I believe they will realise it is more than one illness . And a simple cure will be found . But right now your body just has to renew itself and repair ... 
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    • Posted

      You cannot recover from just being deterrmend to. That would be really good. Who wants to have this illness!!!!!!!
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  • Posted

    Hi lisa

    I have it almost a year.life is so hard.

    Do you ever have relief periods?

    How long do they last. How do you find amiltripline.

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    • Posted

      Hi Greg, yes I have had times when I've felt better, but still only about 70% of what I used to feel. The amatriptoline does help with the aches and pains.
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    • Posted

      Hi lisa

      Did you try any other vits or meds, kidney flushes etc?

      I get relief days too to around 80 or 90 %.

      In bad periods im around 50.

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    • Posted

      I've tried cutting out gluten, sugar and dairy, I've also tried acupuncture and  bit Q10. Nothing so far has helped at all, in fact the Accupuncture made me feel worse ! On bad days like today, I can't even knit, which is kinda how I spend my days, so reliant on day time TV today.....
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    • Posted

      Yes, acupuncture made me feel worse, too. I have tried adjusting my diet by cutting out gluten, diary, eating plenty of fruit, vegetables.... staying off coffein, sugar... but although I have lost a few pounds and lowered my blood pressure, I was probably lacking something in a diet, and that got me into depression and even worse fatigue. Not sure if it was a detox crisis or what, but as soon as I re-introduced partially my old dietary regime, it got better. I found that a blended peeled raw cucumber with a bit of apple cider vinegar and a tiny bit of a herbal salt (MSG free) helps me a lot with a mood and to recover faster from my post-exertional malaise.
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  • Posted

    It is difficult. I find it helpful to just follow my instinctive preferences, and that I'm better at intuitively knowing what will be most pleasurable, rather than trying to work it out. Suddenly having debilitating health problems does undermine a lot of the ways in which one understands one's own identity, and this is made especially difficult because of the ammount of inaccurate information around for ME, much of it coming from medical professionals. Good luck trying to find your own way.
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    • Posted

      Thanks Fidd. I find just as I think I've got my head round it, I get a bad day, and everything goes to pot !
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    • Posted

      This last week I have a the odd day when felt a bit better and the next I am straight back to squre one.It is so disheartening.Sometimes I feel as if i just can't go on. I just try to rest more that is if that is possible. I find talking is the most Trying thing.
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    • Posted

      Glad you had a good day; sorry you then had a bad one. I, too, find talking extremely difficult. Especially talking on the phone. This makes the isolation even worse.
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