My name is Liz, and I live in Ontario, Canada. I am 69 years old. I’m not married. My last relationship ended in part because of my illness; he was very active, and I became extremely un-active. No kids. I’m retired now, although I had to go onto disability before then. I have had FMS for nearly 40 years; no one had ever heard about it when I got sick.
I first realized there was different about my health, after being moderately healthy, I became very sick after returning from a holiday to the east coast. My body was filled with pain. I couldn’t stay awake, I was so weak and fatigued I could barely stand, my cognitive functions seemed to have shut down. I couldn’t remember words or things that had happened. At first, I thought it was just flu, but I never recovered. I was in bed and in pain for months.
I am still not sure if I have fibromyalgia or chronic fatigue syndrome. I was in my mid-late thirties at the time. After a couple of years with no diagnosis, I finally found a magazine article about a “strange new illness affecting women” (FMS). I took it to my GP (a good Dr.) and he said he had recently heard about it. There was no treatment, so we would just treat the symptoms. With his agreement, I went to MANY other doctors who apparently specialized in FMS. Most were worse than useless, and in fact, many were damaging. I finally found one that also had FMS. He was an older man, spoke mostly French (which I don’t), but we managed. He had some good ideas, and was helping, but one of the things he did was put me on Oxycontin. It helped a lot at first, but then not so much and then I was addicted to it. It took me years to get off it. If I ever tried to do very much, I would be struck with a bad flare-up and stopped from doing anything but lying in bed in pain.
The diagnosis itself didn’t change much in my life, it is just that I no longer thought I was either going mad or dying. However, it did mean I that I had an actual illness that a few people knew about, so I was justified in feeling rotten.
Everything changed in my life. I went from being a smart, busy, involved, happy woman to becoming a sad, lonely recluse over the years. I did try to maintain my life as long as I could, but eventually my inability to cope with normal life caught up. I almost lost my very challenging job (police dispatcher), lost my relationships, and went on LTDI. Over the years I have had to give most things. I rarely see my family, I have only a couple of friends who accept my limitations and rarely leave the house. I should add that I have cats and dogs as companions. I wouldn’t survive without their company.
My family initially did not handle my illness well, they mostly thought I was just depressed and would get over it. It took years for them to realize I was sick with a real illness. After that they were very supportive.
The most challenging aspect of Fibro is that I can’t separate the fatigue and brain fog. If I have one, which I usually do, I have the other too. Because of these, I am isolated. If I spend most of my time lying down and reading (TV is hard to follow), I can avoid a lot of pain. Any change in the weather causes pain no matter what.
Now, I am very open with friends & family about my illness & symptoms. I tell everybody, even people in stores while I apologize for being so ditzy. People need to know what this illness is like- they probably know someone who has it.
Besides Fibro, I have been diagnosed with Depression, Arthritis, IBS, Migraines. The best advice I have received regarding Fibromyalgia is: REST, REST, REST, even if I don’t feel like it, I need to save up energy for when I must do something. Watch my diet. Pace myself. The woman who thought up the spoon theory deserves a medal.
I have in the past taken probably every medication which was ever thought to be of any use to FMS, migraine, depression or arthritis. Most of them just made problems worse or had intolerable side-effects. Now I manage my fibro by taking the minimum of meds that do help. As above, I rest, pace myself (most days I do almost nothing), do one thing, then rest, do another thing, then rest. I try to avoid most stress-good or bad.
My mother has always been my inspiration. She has been dead for years now, but she was an amazing woman who overcame many difficult challenges. Like Churchill, she said ““Never, never, never give up.”
My biggest battles are my finances, they are always a problem, although I just paid off the mortgage on my tumble-down house, so that’s good. Loneliness and isolation are a problem. Physical tasks are so very difficult. Probably the biggest battle is overcoming enough of the very exhausting fatigue to do or enjoy anything.
Well, the worst thing that has happened to me due to my illness is the destruction of my entire life. The best is that it got me away from a body and soul-destroying job and forced me to find out what the important things really are.
I’m disabled but it’s invisible, and I look healthy. I haven’t much of a personal life that involves other people, but I try to have contact with people when I can. I struggle with depression and anxiety. I take an antidepressant, sometimes all I can do is remember that it will pass, and I just must hang on. This is where the pets really help. A pet requires care, feeding, loving, and it returns more than it takes.
My words of encouragement for others who are living with fibro are that they should know that although this illness will change their lives, it doesn’t end it. There can still be satisfaction and pleasure, just not what they had previously thought.
What I have learned about myself since my diagnosis is that I’m not invincible or even strong, but I am a damned survivor. The most important piece of advice I would give someone newly diagnosed with Fibro is: Don’t give up, and don’t believe everything anyone, including doctors, tells you that is contrary to your own feelings and common sense. Find people, groups, Facebook pages, anything that gives you support.
I would like everyone to know that they can do this. I am exhausted, so no, not really involved in raising awareness, except all I can really do is make any people I interact with aware that Fibro is out there, many people are trying to cope with it, so be kind to everyone.