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M.e. going on now 22 years

Posted , 7 users are following.

Brendi
Brendi

Was wondering if anyone else has suffered with m.e. fr ths length of time.

Sheer frustration.

Least its bettr than was fr the first 6 or 7 years

Brenda x

0 likes, 17 replies

17 Replies

  • jackie00198
    jackie00198 Brendi

    Posted

    For me, it's been about 18 years. The biggest challenge is to not fall down the rabbit-hole of despair, and appreciate what I have, rather than focusing on what I've lost. Another challenge is to maintain hope after all these years.

    • linda71814
      linda71814 Brendi

      Posted

      I have had it about 30 years now.  It started back when no  one had a clue what it was.  I was bed bound for 2 years with every Dr. telling me there was nothing wrong with me. I slowly got better and had been able to manage until about a year ago when it hit pretty strong again.  But I am hopeful since I know I did get better last time.  I had a few really good years in my 40's.  At least now you have support and we know it is a disease. 

    • janet71271
      janet71271 linda71814

      Posted

      Sorry to hear of your long battle Linda. Encouraging how you did improve though. I do hope this relapse indeed a evolves and you soon feel better. Take care x
  • elaine62759
    elaine62759 Brendi

    Posted

    I've also had it 22 years. Started off really bad, improved a bit in the middle but seem to have got worse again the last couple of years. I try and focus on what I can do rather than what I can't and find keeping a diary helpful to avoid doing things that make me worse and I try and write down something positive (however small) each day to keep me sane!

    • Brendi
      Brendi elaine62759

      Posted

      GOSH...thank u

      I hv never known anyone with it so long.

      I wish u well x

  • littleme1969
    littleme1969 Brendi

    Posted

    28 years for me started when i was 20 after glandular fever. Had good periods and bad.  Just having a a rough time due to menopause flaring it all up again. I also have HYper Pots too. The 2 together makes life a real struggle at times. Like the other try and be grateful for the stuff i can do,, and for the things i no longer can.. i find new things smile 
    • Brendi
      Brendi littleme1969

      Posted

      Yes me tooo

      Menopausal stuf

      Also few months ago...diabetes. duag.

      Not helpful is it

      Xx

      Thanx fr ur reply

      Wish u well

  • janet71271
    janet71271 Brendi

    Posted

    Hi Brenda

    Yes I have had it nearly 22 years too. But I have got worse over the years. Especially the past five or six years . I know others who have had it much longer .

    • janet71271
      janet71271

      Posted

      I do try to remain positive and focus on things I can do. Like making cards . Takes me a while but keeps up my morale and self esteem. I am housebound but don't let that get to me . frustrating I can't do things how I would like to do them. I am a perfectionist but that doesn't mix well with ME ! So a lot doesn't happen. X

    • Brendi
      Brendi janet71271

      Posted

      Janet...hv u always been housebound?

      Have u tried any treatments?

    • janet71271
      janet71271 Brendi

      Posted

      I wasn't in the early days as I forced myself and tried to work through it. But only served to make me much worse. I was off sick for a year and wasn't able to do much or hardly leave the house. When the year was up I had to take ill health retirement from nursing in my late thirties.

      Such a long time I don't remember but would say I have been housebound for many years. The only thing that helped a little was magnesium injections yard ago. But stopped having them because they were so painful. Felt like they were causing damage to my leg. Felt like being injected into the nerve.

    • Brendi
      Brendi janet71271

      Posted

      Thats jyst awful

      Tell me...what treatmnts have u tried

      Over ths time xx

  • JulieBadger
    JulieBadger Brendi

    Posted

    Hi Brenda,

    ?We think I've had it since I was 12 years old, so that makes it 28 years smile

    ?There are good times and bad but I will keep fighting it to live my life as much as possible how I want it.  I have a great, supportive family and doctor. 

    One day soon I'll get rid of it for good is my motto! 

    ?Keep focusing on what you can do and try smiling as much as possible (even when it's forced).

    Another tip is not to keep track of how long you've had it, it will make time fly faster that way smile

    Juliex 

    • Brendi
      Brendi JulieBadger

      Posted

      Thank u

      Terribl how so mamy peopl dont undrstand it...i just soldier on

      I get sum days relief.

      But feel hv gone bk the way fr months now.

      Diabetic too

      Great

      Huh

      X

    • janet71271
      janet71271 JulieBadger

      Posted

      I as I'll for seven you are from around age twelve/,thirteen. My endocrine who diagnosed my ME, believed I more than likely had ME then too. But it gradually subsided and lay dormant. Then re emerged following several infections all after each other

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