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Living With Fibromyalgia - Online Support Group

React! Share your thoughts

How has your life been affected by a disability? (Yours or someone else’s.)

What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions?

Share your thoughts with your fellow members!

My disability is largely invisible: fatigue and pain right up there at “8” when I walk or stand too long. Other than that, I look healthy, and young for my age. The only way 'round the problem is to carry a fold-up stool, or ask for help, but when I do I can often see the reaction on the other person’s face – to them I present as a lazy whingeing whiner. I don’t really blame them, going on appearances, but it’s hard to be on the “judged” end.

Sometimes I wish for a really really bright (think: safety vest) t-shirt that says “IF YOU ONLY KNEW”.

Seenie from ModSupport

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Before February 22 of this year, I was a working professional – a Director at a large international business. My work hours took me away from home about 60 hours a week; I babysat my grandchildren two days a week; I regularly volunteered in the community; and I helped care for my mother in hospice. I worked even after having abdominal surgery; no one at work other than the District Manager even knew I was in the hospital because I continued to work remotely as soon as I was awake after surgery. Then my life was turned upside down.

I attempted to work after my symptoms started but after a week, i could not drive, had horrible visual problems, had difficulty walking, and was quite confused. On March 8, my independence was taken from me.

Everything in my life changed without warning. Vision, hearing, mobility, driving, standing, ability to use hands, memory, speech, and other capabilities have been affected. Financially it has been difficult although I had short-term disability payments for 6 months. My employer has fought and has denied long-term disability; of course, I have appealed. On a good day, I can walk to the mailbox outdoors to retrieve the mail. I can no longer watch my grandchildren without help nor can I care for my mother. My decision making process is impaired so I am useless answering work-related questions. Life totally changed.

My physician had me apply immediately for Social Security Disability but am aware that few are approved in a timely manner. Another friend has been trying for almost 4 years and she has several other medical conditions in addition to Fibro.

Like others, I appear to be “normal” whatever normal is. I do not have a sign around my neck saying I am in great pain and can hardly see and it is taking all that I have to walk into church or into a medical appointment. Well-meaning friends exclaim that “you look like you’re feeling much better!” when I am smiling in spite of agonizing pain. Or, they hand me something to read and ask what I think. Some days I think it would be easier to cope in public if I were confined to a wheelchair or looked sickly.

But all is not bad. I have developed deepened relationships with family and friends. Also,I have reconnected with some of my past friends that seemed to have dropped off the radar. Three of them have severe fibro, one has MS, and another cancer! I had been busy with my career I didn’t even know what was happening with my friends. We have made our support group and we encourage each other frequently by text, phone, or social media. My faith has improved greatly and realize that I must have a purpose other than directing a major company! Life has been full of blessings.

Fibromyalgia has been a curse and a great blessing. Financially, my disability has been costly. Timewise, the constant work to provide documentation for the disability application, scheduling and keeping medical appointments and obtaining medications without being able to drive has been burdensome.

Thank you for allowing me to share my journey.

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I had started to go to phys therapy so that I could be able to change my bed sheets, squat down, make my lower back stronger . I was given a giant red rubber band & a giant green rubber band to do leg exercises at home. & we made appts Tues & Thus for the next month (Sept). My PCP & I have been working on my constipation problem, let’s try this combination let’s try this other combo… I also seem to have a Lot of UTI’s. The antibiotics for the UTI’s was “fixing” the problem & was making a Bigger problem in the process. On a Mon I went with my Sis to Carroll, she has a car, therefore I did a Lot of squats. Tues (I sleep on the left side of the bed) when I tried to get up out of bed my left leg collapsed. There I was on the floor my left leg in one Giant charlie horse I cannot move, in Agonizing pain, the phone was on the bed, I finally was able to make my leg straight & stretch the muscles, to hobble & let the dog out & me to the toilet. Spent that day taking nausea pills, muscle relaxer & pain pills & a Lot of water & I kept myself under the heating blanket & only moved if I had to pee or the dog did. 2nd day the same. Thu I was slightly better than the past 2 days, but now I had diarrhea & I was pooping out water, I would take a drink & 5min later I was on the toilet. I knew it wasn’t right but the PCP’s office was closed. Told myself I’d call the MD in the morning. I had a UTI was given an antibiotic & sent home. Late Fri evening I was pooping clear mucus. Sat morning I called the Nurse On Call, I asked if my UTI was more important than pooping clear mucus. I was told to come in. The hospital stay was Very Bizarro. It so happened that the antibiotics given me for the UTI’s also Killed all of the Good bacteria within my bowels. I had C-Diff, colitis, a UTI & Very dehydrated. I gained 10lbs from the saline solution. My CNA was oddly wanting to be my bestie. I had a Surgeon Yell at me, she Not knowing my medical background. The picture I have to represent me, Taz in the middle of Aliens is how I feel most of the time. Family members
don’t understand a Flare except my daughter. I am afraid I am distancing myself from my only family left. Sis, her Daughter, my Daughter, & my Son. I am Safe here in my home & the outside is really scary. & I try hard to come on here to do good. To help someone. We All Need to be needed. Peace, Love & Light. Maggi.

I have a very visible disability using an electric wheelchair following a heart attack however when a fibro flare hits … it hits. I don’t see myself as a disabled person rather than a person who identifies as having a disability.
My life is full of rigid routine, everything has to be done in order and everything takes 10 times longer than it used to before I was wheelchair bound and before I had fibromyalgia. This is hard for people to visualise after all for how many people does it take 10 minutes to put a pair of trousers on, 15 if putting on laced up boots.
I had a physio who told me buy yourself lots of tracksuits as they will be easy to put on, well that was my instant incentive to wear exactly the same clothes as before my injury and if it takes longer to get dressed and undressed so be it.
Living on my own is tough , everything has to be paced out and I found it hard to see reactions of others who knew me as an active, professional woman in the workplace.
I have to say probably because I look fairly young for my age that I still get the oh dear looks or awkward expressions, uncomfortable conversations, on rare occasions rude comments however I don’t really notice anymore ad tend to step in fairy quick to say something like "we can share this lift ,looks there is plenty of room’. Since I became disabled my old so called friends drifted away and I made new ones.
I don’t know what I would do if suddenly became all better, my wheelchair has become part of me just like my glasses. My one wish is that everyone including my love ones could see that I am still the same person.
I bought a wonderful rucksack for my wheelchair and it says I am in a wheelchair and I know i look good! the reaction is priceless.
Its quite simple I think, just see a person as a person and if you are unsure what to say just ask

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