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Living With Fibromyalgia - Online Support Group

Deena

Okay. Where to even begin.

I have a pretty stressful life in general. Happily married for 23 years to a true partner in life, we always manage to dig deep and find the strength we need when the other needs a rest. And we do need rest. We have three children. All at home with us. Our oldest is 27. Our youngest is 18. All have disabilities. Our oldest has many health issues, but we couldn’t make it without her. Even with her own problems, she is the primary care giver for her 18 year old brother, who is severely autistic and bipolar, while her father and I work. Our middle child, at 20 is actually the newest addition to our family. She is trans and grew up in an abusive household 1700 miles away from us. But the internet is an amazing thing and she somehow met our daughter on line. We invited her to come visit when she turned 18, and she just fit right in and stayed. She is profoundly deaf and is in the process of transitioning now that she feels safe to do so.

Six years ago, I managed HUD housing for the elderly and disabled and I’ll be honest, when I had a young person apply, we never asked what the disability was, because frankly it wasn’t any of our business, they often told us anyways. When they said fibromyalgia, in the back of my mind, I always thought it wasn’t a real thing. I was 38, prime of my life and invincible. To get ready for an inspection once, I spent hours every night painting every hallway and rail in this 7 story apartment building for weeks. I woke up sore, but fine.

Then I started experiencing fatigue. Not tired. Fatigued. You all know the difference. I started having pain in my joints, rashes, muscle aches that just would not respond to PT. Insomnia. Depression. The depression almost took my life. I gave up. I went from physically the best I’d ever been and in under a year, there were days I couldn’t get out of bed. I really truly believed that I was being whiny and petulant. I couldn’t get over my frustration at not being able to mind over matter my symptoms.

What followed was years of different diagnoses and failed medications. I was finally diagnosed two years ago with fibromyalgia by a neurologist, after seeing many other specialists. And even then, I couldn’t quite convince myself that I wasn’t just being lazy and self indulgent.

The truly strange this is, my sister has the exact same journey as me, we both worked in the same industry and began experiencing the same symptoms only months apart. We have all the same issues, but meds that work for her, do not work for me and visa versa.

She is the only person I feel I can talk to about this disease without apologizing for complaining too much.

I guess I just need to feel that we are not alone and that there is some sort of hope, or treatment out there that we don’t know about.

Anyways. That’s me. I’m down, but not out.

Hey Deena,
Welcome to Ben’s Friends. Having read thru your introduction I can see many parallels. I worked initially in youth accommodation and then the disability sector for many years (20+) and thought I knew all about it. Then my own situation reared it’s ugly head, ohh how little I knew. I mean I knew all the theory, but when you have to live the reality yourself, ohhh hell, that’s a learning nobody wants. Having that insight of working within the sector has given me an understanding for sure but the level of comprehension was limited to a view from the outside. From the inside, YUCK, I don’t like this view at all. Whilst working I had to do so within my clients limits, and that was OK. But now I have to deal with things within my own limits. I never had limits before, so although accepting others limits was simple, just part of the job, but accepting my own. Ohhh Hell No. I don’t want to be accepting THIS, but as time has gone by reality has set in and the fact is I have no choice but to accept. This is a reality I hate.

I too have had the revolving door of dr’s, dr’s and even more dr’s, with every alternative theory, diagnosis, treatment and medication known to mankind. But once I had exhausted every avenue (And myself) I gave up on hunting for the magic pill, that magic answer and my journey has become more peaceful with a bit of acceptance. I must admit I fought against accepting reality for a long time but I was only doing myself more harm than good by not facing it and although it has been right there in front of me, looking at it was a little, no, very confronting.

You’ll find Ben’s Friends to be a very supportive environment. I can’t tell you much that “Phew, I’m not the only one” moment has meant to me and the knowledge that there are others out there fighting very similar battles makes me feel “Ohh I’m not so isolated” and that means a lot.

Merl from the Moderator Support Team

Hi Sis! I made it! I love you so much and you are the strongest most amazing woman I know. Thanks for asking me to join.