Just getting through the day is a challenge when you have fibromyalgia and chronic fatigue syndrome. Something that's really helped me is hearing how other people do it, and the new Readers Respond feature here at About.com has increased the learning opportunities for all of us.
Here's an example of a great response that can help all of us learn to cope with our illness(es) a little better. Kathy said:
"The thing that has made the most difference for me is simply accepting the fact that I must slow down and work and play at my own pace, no matter how many breaks I need to take. And not to worry about what others think. When I felt pressured to work like everyone else (those without FM) I inevitably overdid it and payed for it with increased pain and depression. I give myself permission to rest when I need to regardless of what others think I should be doing."
Congratulations, Kathy, and thanks for bring up this very valuable point -- we do need to get past what other people think, the expectations of society. It's a tough one, for sure. Who wants to be thought of as lazy, a bad parent, or a slacker at work? I remember when I was still working in TV news, we'd had a huge story break on a Sunday. About a dozen people were called in, but not me. I didn't take it personally at all -- my supervisor knew I'd been feeling lousy on Friday, and also that my husband worked weekends and I was home with my children. However, on Monday I asked a question about something that had gone on, and one of my co-workers said rudely, "If you'd come in like the rest of us, you'd know." I know the people closest to me understood, but how many didn't? It's not a fun situation to be in.
Kathy uses one key phrase: I give myself permission. We all know we need to pace ourselves, we all know we need extra rest, but how many of us truly give ourselves permission to do those things? I know a lot of us, myself included at times, keep pushing ourselves beyond our known limits because we haven't allowed ourselves to stop when we know we should.
Have you given yourself permission to stay within your limits? In what areas of your life do you struggle with this? Has something helped you overcome your concerns about what other people think of you, or helped you change your expectations of yourself? Let us all know by leaving a comment below!
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I’ve suffered from this strange illness for about 10 years. The symptoms change, and so does your tolerance for both natural and pharmaceutic help. Little is known, so I waddle along, bones on fire, muscles tired beyond understanding, with my courage afloat, because there WILL be an answer one day. I have tried everything from acupuncture (meaning natural and alternative approaches), diet changes (eliminating wheat) and even tried methodone for a season (not for me). The best thing you can offer your friend or spouse who has this condition is your patience. It truly sucks to hurt ALL the time.
I use up to 40mg of Oxycodone and 20 mg of methadone daily to survive the intense muscle deep bone pain in my legs. Acupunturist/TCM/MD put me on a huge amount of supplements,after a hair analisis showed high levels of Cadmium and sluggigh Adrenal and Thyroid[low metabilizer]. some are Adrenalin, Ox bile etc… and I have not had a full night sleep since, 4 months now.
I have also dev. the most intense migraines of my life.
Use to get them but not for the last 15 years, they were far and few between,I also use to sleep all night.
Now I am awakened with RLS and up all night.
I plan to stop these supps.
I need a Migraine survival kit. What should it consists of?
Is there a shot I can give myself? Maybe some muscle relaxors too?
The Oxy and Meth do not touch these intense migrains.
Any suggestions are greatly appreciated
Judy
Judy, I heard they are now giving botox injections for migraines with great success.
Best advice I ever received from doctor was “Do not associate with people who are negative.” Retiring really helped getting rid of stress. Also just living with cat is very helpful.
I do not have any faith that a “miracle” pill will be found for fibro as I do not believe anyone only has fibro. It will always be to find a good doctor who will trial and error you until the right combination is found. It took me 10 years. However my doctor left in May and decided to write me a prescription to try Vicodin. What was he thinking – this set me back 10 years and developed hypersensitive feet so had difficulty walking. I went to see nurse who I had seen 3 years ago as replacement doctor will not be here until fall. When she saw what bad shape I was in she wrote prescription for Percocet every 4 hours as she noticed in my records I had not seen a doctor in 6 months while on this and that in itself was a miracle. Percocet is my drug of choice as it only takes half tablet and at most only take 1 per day and I only take it on an as needed basis. However still major feet issues that wake me up at night and I walk like a penguin for half a day. I have ordered some memory foam insoles to see if this will help. Also use heat wraps on wrists which work wonderful.
Depending on your tolerance, cool or cold packs on the base of the neck, and some strong coffee with cream (to help settle the stomach) quiet, or meditation music, and a dim room. Stay quiet and breathe as deeply as you can. Relax from the toes up and make each breath more relaxing than the last. Good luck, God bless!
I couldn’t agree more with Kathys comment!
I do take it easy, I know that if I push myself too far I will inevitably go into a flare. I try not to worry or even care about what others think. I’ve lost a few friends who just can NOT accept that I am unable to do most of the things that I used to do.
I figure~ Oh well, Their loss, not mine! I can only pray that they/ or their loved ones never end up in the condition that I’m in !
I have had a diagnosis for 4 years, but was really struggling long before. I am the one in my family who takes care of everyone. My parents are now passed, but I have a daughter who is disabled and a granddaughter living with my husband and I. No matter what the occasion I am usually doing all the cleaning and cooking for family get-togethers. After the last one this week I am calling a halt to it. Everyone else had a great time while I spent two days in bed trying to recover from the overdoing. I love having family over and love to cook, but will be doing some major scale-back from now on. I will sit my children and husband down and give them the new plan for family occasions as soon as I come up with one.
I have suffered for 45 years. It took 23 years to get a Fibromyalgia diagnosis. Pain was the first symptom. It was followed 8 years later by daily headaches. The fatigue began about 17 years later. Various other symptoms are in this mix. Over the years I have tried everything from abusing pain medications to body work to several antidepressants which I was not able to tolerate. Today I stay on top of the pain using long acting codeine contin and short acting codeine for break though pain strictly as prescribed. I regularly see a Chiropractor, an Osteopath, a Massage Therapist an Acupuncturist and a Naturopath. Instead of pain medications I now reach for cold pads, heat pads, Deep Cold rub, HeadOn and my infra red heating pad.
Fatigue became my main problem. I took Provigil for 8 months until it stopped working. The past year has been ruled by overwhelming fatigue. One month ago I was given a trial prescription of Ritalin and it has freed me of fatigue. I have been able to return to my exercise routine. It has helped the pain as well as depression. I am hopeful that it will continue to help but am also aware that I must be careful of overdoing. Pacing is key.
I no longer care what others think of me. All that really matters is what I think of me. That has been more difficult for me but I’m finally there. I do the best I can with what I have. In other words I have made lemonade from the lemons I’ve been given.
What can I say that hasn’t been said? We try everything from alternative to medical and what may work for a time will stop working after a time. Also what works for some will not work for others. When your doctors tell you that there is nothing they can do for you anymore, where does that leave you? Feeling quite alone and frustrated. When your family is patient and understanding it helps, but they don’t stay that way all the time. They get frustrated too! All we can do is keep on going and keep on struggling in our own pain. We have each other and that, in my eyes, is what we need to keep going. Without my online FM family I would not be here today.