Old 01-23-2015, 08:42 AM #1 (permalink)
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Question Surprised

I'm surprised how many people here are still able to work and drive their cars!

I've never driven or gotten a liscense, but I know I couldn't be trusted to get behind the wheel now with my fibro and foot problems, along with the meds making me less likely to catch hazards and other road sense.

I doubt I'll be able to work again in my life. Too much pain. Too fatigued. Too floaty and distracted from my meds.

I'm only 27, and I know these things are just not really a possibility anymore. I need to rest the whole day after just doing some shopping or housework! How do you guys do it?

Also, is anyone here familiar with the "Spoon Theory"? I feel like I'm getting less "spoons" all the time...
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Old 01-23-2015, 10:01 AM #2 (permalink)
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Default Re: Surprised

Fibro affects folks differently is likely the main answer. The other answer for me, personally, is deciding what is an acceptable amount of pain and fatigue to accomplish what I need to do along with maintaining a schedule. I am able to work about 12 hours a week, beyond that I pay an increasingly higher price. When I was working full time, I cried every night. I came home and went to bed. I stayed in bed all weekend except for a couple hours of errands. I used to do 10-15 minutes of housework a day. Driving is the same. I ration my time, travel during my generally best hours of the day (10-2) and don't drive very far. I do ration my "spoons," but sometimes even that doesn't work. I force myself to move when I don't truly feel like moving because staying in bed is just not a option. I do find that gently exercising in small doses helps keep me fit and improves my mood. Obviously, all of this doesn't count during flares. Then I keep repeating, this will pass. Focusing on what I CAN do rather than what I can't do helps. Take care and hugs.
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Old 01-23-2015, 05:58 PM #3 (permalink)
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Default Re: Surprised

What do you mean by spoons.
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Old 01-25-2015, 12:54 AM #4 (permalink)
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Default Re: Surprised

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What do you mean by spoons.
If you search "The Spoon Theory" into google it should be the first result. Definitely worth a read, though is kinda long. Basically is a woman's story of how she managed to successfuly explain what having chronic pain is like for her to her friend.

But yeah, my energy, or 'spoons', are seeming less and less. I have really not been feeling too great lately, and because of the pain and depression, I have been getting very little quality sleep. Having poor sleep accumilate over the last few months, I have been feeling worse with my general self and well-being, as well as the pain. Pretty sucky.

Just been having such a crappy time lately, with other things as well as the fibro. I just can't help but wonder how you guys do it! I think I'll need to phone Social Services and request another/refreshed care assessment and see if there is anything additional they can offer me. I'm only 27 and already starting to think about things like respite care for the future.

Apparently I have Osteoperosis to look forward to in the not too distant future too. Doc said last year that I'm already showing some signs of it, though it isn't affecting me yet. So I really don't know how bad I will be in say 5 years. Though, with the way the last 5 years have been, I wouldn't be suprised if I was in a wheelchair by then!
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Old 01-25-2015, 05:01 AM #5 (permalink)
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Default Re: Surprised

I was working when i found out about my fibro. I was working in retail. Had been doing that for almost 13 years. A few weeks after finding out about my fibro my body started to act up more and more and at one point i was hurting so bad i felt like i was going to throw up. I had to go into my bosses office and talk to him.

I was told if i stayed i could only work 10 hours a week. I decided it was time to go on. He had asked me if i wanted to try to stay to finish the night but i could not handle it anymore. He told me to tell him the next day what my answers was. So i told the lady under him the next day. I made sure that they could at least put me down for rehireable one day.

I don't miss working much. It just got way too hard for me to handle the stress. My mom lives with us and she had demnita and my wife has some problems of her own so it's been a pain in the rear end. But what can you do other then moving on?
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Old 01-25-2015, 07:35 AM #6 (permalink)
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Default Re: Surprised

True, Benny. Guess you have to just accept and move on.

I'm sorry your mother has dementia. I hope it is not very severe yet. My great grandmother had that (my family is kinda young, I guess) and I was having to look after her from when I was around 10 through to 15 (when we finally got a carer for her) each school holiday there was, and it is tough. I truly wish you the best.

I know a huge part is accepting what you can and can't do, but it is tough when the list of things I can do is shortening all the time. The recent pains in my shoulders have been getting me down, since it is now another constant pain I have to deal with. The pain there is different. It is the muscle rather than the joints. Stabbing and aching pains, like somebody pulled or stretched my shoulder blades out too far. A hot water bottle sometimes helps, but sometimes even touching the area is too painful. It's really annoying!
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Old 01-26-2015, 03:16 PM #7 (permalink)
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Default Re: Surprised

I was teaching full time and had two young boys when I was diagnosed. I pushed myself for many years after that but felt like crap all the time. I took a few years off then went to part time then back to full time. Worst mistake I ever made was going back to full time teaching! I wound up leaving permanently because I was in so much pain it was unreal. I have not been back nor do I plan on going back.

I now do animal rescue volunteering. We have foster kittens and I love the little fluff balls! It makes me feel like I am doing something to help and gives me a reason to get up every day. I am 50 now. I also have gotten into going to a book club which gives me a reason to sit and read.

When I have good days, I have to be careful not to over do it because I will be back in pain if I do. I live with a certain amount of pain daily as I know it will never go completely away. I meditate a crap load and that helps. I do have days where getting up and brushing my teeth is all I can do. I accept that I will have those days.

I have recently thought about going back and working very part time at a store or something I would enjoy doing but I never know from day to day how I will feel.

Best to you!
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Old 01-26-2015, 03:17 PM #8 (permalink)
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You sum this up well!
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Old 01-26-2015, 05:11 PM #9 (permalink)
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Default Re: Surprised

Well my OH wants me to pass my driving test. Having a car would make my life a lot better, weather it will happen is another matter.
I went to the play centre today with my two year old.that was after walking the dog and doing washing.the worsed part for me is stopping. As soon as I sit down or go to bed I stiffen up.i feel like I have the flu or have been beaten with a stick, moving helps a lot but not at 11 at night.
My dog is a border collie nearly a year. He is very demanding of his walks.and while some day I wish I didn't have to do it, I no getting me moving does me and my little one good.some days it's hard work and all I wanna do is get back home. But he loves his walks and is good as gold when his back.i swaer him and my little one have saved me from a life in bed.
And right now after taken my meds and painkillers I feel 100. So it's not like it's a breeze for me.but I no deep down Id be a lot worse off if I didn't have to go out. And suffering with depression some days I don't even want to open the curtains .
I've said this 100 times and il say it again if u can move do it.ive had my pain meds changed to and there not as good .on top of which I can't go to the loo.so looks like back to the tramadol for me lol.
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Old 01-26-2015, 06:03 PM #10 (permalink)
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As I have sfn. Nerve damage. I was told by my neurologist that the stabbing n burning is the nerve. The reason for the touch hurting is like a light cord that is broken and sparking on the backside of the skin. I'm sorry you have to go through this. Thought it might help to pass on what I learned. I to thought it was muscle. That's why the relaxers don't help. Stay well
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Old 01-27-2015, 05:44 AM #11 (permalink)
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As I have sfn. Nerve damage. I was told by my neurologist that the stabbing n burning is the nerve. The reason for the touch hurting is like a light cord that is broken and sparking on the backside of the skin. I'm sorry you have to go through this. Thought it might help to pass on what I learned. I to thought it was muscle. That's why the relaxers don't help. Stay well
Thanks. I'll be mentioning my shoulders next time I see my regular GP. Get him to look at it and send me to a specialist if need be.
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Old 01-28-2015, 11:49 AM #12 (permalink)
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You have fibro but no specialist? Who diagnosed you? Please if you have insurance get to a specialist who will get you the help you need.
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Old 01-29-2015, 07:44 PM #13 (permalink)
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Yes. I have a specialist, but I meant a different specialist who may be more suitable to nerve damage and helping to ease it if it is nerve damage. Being referred back to physio for example, or a neurologist.
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