It is, at best, a partial solution…but it filled a huge void for me. I was incredibly lonesome, but I was pretty much bedridden during the winter. I made some online friends that I really enjoy talking to…we’ve even talked on the phone a few times.

I tried a support group up here in Washington that I KNOW is nothing like Fibrohaven’s. I couldn’t take all the whining and carping. There was just a dark feeling about that group. So online was my best alternative, I felt.

I’m not a psychic, but I predict that there will soon be a Fibrohaven blog providing some possiblities for alleviating the isolation…

Kathy

I was finally diagnosed with both fibromyalgia and ME/CFS last year, after suffering some pretty severe symptoms for between 15 and 35 years. Recently, I joined my local fibromyalgia support group here in the UK, however:

* The meeting place is 1.6 miles from the nearest station and I’m 1.1 miles from the station at my end. Even on a VERY good day indeed, 5.5 miles is an impossible distance for me to walk (and survive to live the tale!)

* There are infrequent bus services, but this involves changes, waiting at places where there are no seats (which I cannot manage) only gets marginally closer and I find bus journeys, with all the jolting, too painful.

* I don’t drive: I was forced to give up several years ago because of the severity of my symptoms.

* Taxis are prohibitively expensive, on benefits.

* I only moved back to the UK relatively recently and don’t know anyone here who could give me a lift.

I’m not at all comfortable with my isolation and am actually acutely aware of both the need and want to break it. I’ve joined a few local activities hoping to meet new people and just converse with humans again, but this same or similar list of challenges faces me each time. So far, I’ve been forcing myself to go to as many of these things as I can and, I’ve been suffering the “boom and bust” and terrible pain of relapses and post-exertional malaise afterwards, which each time get worse.

To add insult to injury, by trying, I’m then accused of having nothing at all wrong with me because I just “lay around” (in agony, of course) lazily, but suddenly I’m “able to run around all over the place.” Stagger would be more accurate, but all attempts to break my isolation result in a new wave of abuse from those around me who choose not to understand the nature of these illnesses, adding more stress that increases the severity of the relapses.

I’ve really no idea how to combat this isolation – at least not in the long-term, because I cannot see me being able to cope with pushing myself this hard and there not be severe consequences – under these circumstances.