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melissawolfe1981 avatar

What to expect/do having ME/CFS?

Autoimmune Diseases | Last Active: Oct 1 7:29pm | Replies (3)

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@melissawolfe1981
I'm sorry to hear you have been so ill. When I was 31 I became so fatigued (and etc) I lost my career as an RN. This was 1990 and the very beginning of understanding there was an illness, CFS. I had friends in Canada who had treatment and more support, their diagnosis was ME. I'm thinking to tell you that despite your diagnosis, this is a time where it is not considered "all in your head." There are treatments now. Hopefully others will reply that have CFS/ME. I went to a big medical center and they told me to go home and meditate. I told them I'd been mediating for 20 years and then became ill. Within 10 years of living with an illness no one believed in, my bloodwork changed. I had RA, Sjogrens, Hashimotos thyroiditis, Undifferentiated Connective Tissue Disease. All of the autoimmune was in my future after a decade of severe disabling fatigue. I will never know if the two experiences were connected.

Here's my hopeful news about CFS; I became a person with a rich inner life. I became a published poet, creativity was key in my surviving the years of severe fatigue. Your life goes on. It is just not what was expected! I hope you find your inner strength and joy.

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Replies to "@melissawolfe1981 I'm sorry to hear you have been so ill. When I was 31 I became..."

@jw9 thank you & I’m so very sorry you had to go through so much too. It has been exhausting to go from living a normal, functioning life to a not so functioning life. I’m thankful for a diagnosis finally & have tried to start embracing & navigating this “new” life which is much slower than what I was before. I can’t believe their suggestion for you was to meditate….Im so sorry. The frustration of finding & receiving help has been insane. Again, thank you for your positive message🌻