Then you get an answer to why you’ve been in horrific pain. Eventually people start whispering that he / she is looking good. You get worse then and you can’t do what you used to do from dancing away the night to just having to depend on people while just needing to understand that your Ill isn’t going to last a week or a month or a year it’s life there.
You then start spending more time in your bed than you would spend in the lounge. Your living area is your office. You spend nights either sleeping or waking in pain, and people still think that you can’t be bothered either by being lazy or pretending to be your Ill or u. You then start losing some of your friends as you continue to cancel but still don’t understand what you’re throwing in. You feel your life in front of you slipping away and there is not one thing you could do. Your disease has changed that person you used to be.
To sum up in one paragraph will be that Every part of our lives has changed because of FM. Lots of member said due to extreme fibromyalgia pain they have to give up their jobs. Fibro also forces people to give up physical activities such as exercising, socializing, and even many have to give up driving. We will slow our speed so as not to catch the flare up.
Here is what community shares with us:
1. I quit my job a year ago. A few months ago, she moved in with relatives. Because of the overwhelming fatigue and cognitive issues, I could no longer handle my job duties. Now applying for SSDI which added to my levels of anxiety and stress. Losing your independence is a terrifying feeling. – Cindy Lee, right?
2. Had to radically change the diet and can no longer eat processed food. Cant work, even you want me to feel useless now on a disability pension. Loved to do things now have to pick and decide what to do. Cant go out a lot when it hurts too much from the cold. – Faaia T
3. I’ve had a hard time completely changing my lifestyle, I can’t work anymore, I’ve been very involved before all this, now walking up a flight of stairs is enough. I miss the one I’m using to be!!. – Susanna W.
4. Trying not to be so hard on myself, I get very frustrated about things that I struggle to do, more easily said than done. It’s even harder to keep on top of my studies so learning how to appreciate the little wins is a big adjustment. – Frederick K.
5. I used to be our local high school band’s majorette coach / instructor I attended all of the football games and competitions that required a lot of walking alongside all of the baton twirling physical activities. I had to give it up four years ago because of the extreme pain and weakness that I would have for a few days following a band event. – Wolfgang W
6. Fibromyalgia had taken away my life. Can’t work any longer. I am completely disabled. Can’t do anything in public or around the house. I have a walker in there. The whole time tired, and so much more. Fibromyalgia has taken away quite a lot. I’m 44 years old in an 80 yr old body. – John Paul J.
7. That’s changed my entire life. I am utterly unreliable. I am constantly canceling last minute appointments. My social life has all but disappeared. I can’t keep my household and so much more … – Phyllis B
8. I had to stop doing to Fibromyalgia after 25 years of faithful working experience. Take a lot of meds only made worse by operating. I knew my name so little let alone that I could function. Day after day, My life gets worse. And it was a struggle to keep the House clean. – And Karen B
9. I used to be an active walker, active in the community and in things of all kinds. For ages, I had not been able to work. Thanks to infusions of medical cannabis and lidocaine, I can work a part time job and enjoy life a little bit more. – And Nancy P.
10. Used to walk sometimes 10 km per day, if time allowed. Every weekend. Hiked. Cross fit training attended. Can’t do any more of this. Some days, pain and soreness are overwhelming. Only 30 minutes wandering around the shopping center means terrible back pain and need a nap. On the bad spots I use a combination of magnesium oil spray and some essential oils daily and I take supplements too. Some foods cause an inflammatory response and heighten the pain. And I’m now keeping myself clear of other things I did. I am always fatigued. Need to get naps whenever possible. Used to socialise love. No longer able to make loud noise or crowds so I stay home. – Lynel P.
11. I used to be a non-stop guy, do I have to get it done 24/7? Definitely my former self will not remember this me!! I’ve had to relearn ALL this many times now and I’m just thankful that I’ve been able to get my legs back to function together and respond to my orders again!!! But I never know if I can walk the next day, let alone how extraordinarily shitty I feel for no apparent reason, except perhaps when the weather moves in? A lot of fun here. – Knuckle S
12. Had to go ahead with disability. Had to stop my healthy life from giving up weightlifting, cycling, aerobics, going to the beach outside in summer. Giving up enough food. Being in constant pain, Drs don’t help, Getting treated like I’m a drug addict asking for Meds for pain. A lot of falling down. Now I have to live with my daughter and grandchildren because the disability isn’t enough for me to live on. It is really sucking. -The Sandra L
13. I can’t accept it affecting my life anyway. I keep reminding myself that I don’t need to say anything more, I’m “forgetting” how much I’m affected when I overdo things. Then beat me up when I feel so horrible that I wish I had listened to myself beforehand. It’s hard because people don’t understand it – simple things like getting on a train, cleaning the bath tub, socializing is beyond words exhausting. I have to explain all this stuff all the time I call it handwork. I think the worst thing is that – the explanation and lack of understanding. – And Hannah J.
14. I need to be selective on where my energy will be used on any given day. I live a kind of life like “if you do this, you can’t do that.” You understand over time that these decisions – and sometimes missing things – will make the difference between a tolerable day or one where symptoms flare up. It’s much easier to go without than dealing with a flare every time! – And Linda J.
15. I had to relinquish driving. I can’t turn my head toward the left. I got to turn my entire body around. And instead of pulling out and hurting somebody I just stopped driving. I really hate running around being dependent on others. – Maurice G.
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