Chrissy

Diagnosed with fibromyalgia and sciatica in dec 13, was working hard with family and grandkids all of a sudden my life has changed dramatically! Really can't get my head round not being independent anymore! I try to do as much ' Normal' things as I used to but I feel so useless! What does everyone else do to pass the days now that you have become less mobile? I'd love to know

13 Replies

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  • Hi and welcome sorry the meeting is at a difficult time for you.

    Take the time needed in adapting and surviving :-)

  • Hi Chrissy

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I have pasted you a link to our mother site, FibroAction which hosts loads of useful Fibro information:

    FibroAction Website:

    fibroaction.org

    Well, to help pass my days for a starter, I volunteer with FibroAction as an admin on the forum, and I enjoy this very much. I do have loads of hobbies but I never seem to find the time to for them!

    All my hopes and dreams for you

    Ken

  • Hi Welcome to the site I hope you find help and fun on the site. You ask what we do well mostly anything in moderation- dont set your self giant tasks take small steps and gradually build up. So no spring cleaning unless you have a helper, no over stretching.

    Seriously some of us write, some paint, felting is popular what ever your hands will allow you to accomplish.

    I am a volunteer Administrator like Ken so that keeps me occupied. I think the best thing is be normal and if the pain is winning relax till it releases you!

    We do have mad coffee mornings on here do join in

    Best wishes

    Ginsing

  • Hi Chrissy. you can do most things, but not for long. If you have a pile of washing up. do half have a cuppa and then do the other half. I ironed 6 shirts yesterday 2 at a time throughout the day. It still hurt but not so much. and to think that i used to iron shirts for a living.

    If its stew for tea the same rules apply. A little at a time, you will soon learn what your own limitations are when its starting to get too much stop.

    one of the first things that i did when i had to give up work was learn to use a computer, ( best thing i did).

    I soon discovered pinterest and now spend my time crocheting Tatting and other crafts.

    If you go to the top of the page and scroll down, you will find amongst other thing a craft corner. You may get ideas from there.

    They are in blue lettering.

    Good luck in finding something that interests you.

    sue xx

  • Hi,

    Sorry your having a rotten time.

    I would say, like others, try and adjust your life (I know that's hard) and pace yourself.

    One thing....I do feel there is a period of time after diagnosis, of finding acceptance. Without acceptance there can be a 'fight it' mode when it is literally a worsened vicious circle.

    Lovely people on here, always happy to talk, support and knowledge of concerns.

    Xx

  • Hi Chrissy

    I was diagnosed last year and, like you, I had a very hard time adjusting to not being able to do everything I wanted to. I also have CRPS, epilepsy and chronic chest pain (plus a never ending list of others). I had to give up work 3 years ago now and the fibro really hit me hard.

    I decided to start studying from home through the open university. I can't just let these issues make me stop at age 38. So, I'm doing a degree so that eventually I can become an examiner, marking GCSE & A-Level papers from home. It's not easy and I am only able to do one unit at a time (most students do at least 2), but I will get there slowly. It may take me several years of study, but my disabilities aren't going to stop me.

    So, basically no matter what age you are, the world is your oyster! I hope you find some of the suggestions useful.

    Fluffy hugs.

    Jayne x

  • Hi Chrissy and welcome.

    I am sorry that your Fibro is hitting you hard at the moment. I can't really add to what the others have told you, but I can say that on this forum you will find ways of distracting yourself and passing some time. It does all seem to be about pacing and not being too hard on yourself. I find it hardest when I can't play with my grandchildren but they know I love them and that to me is all that matters. I do as much as I can with them and with my housework and family and I still manage to do my part time work. All is not lost, you just need to find your way that suits you, we are all different so what suits me may not suit you.

    I really do hope that you can find your path :)

  • Thank you for your advise x

  • Thank you for your advise x

  • Hi Chrissy,

    I'm having a pale blue day so I really HEAR YOU!

    Three years later, I'm still mostly angry, fed up and slightly vexed on blue days that I've not completely accepted and got my head around this horrible condition. This year, I'm consciously doing everything I can to delete the word 'USELESS' from my vocabulary all together and focus on having as many pink days as possible.

    Despite all the good advice on pacing, I still sometimes let myself go on a good day (which appear to be getting fewer and far between) 'making hay while the sun shines' - basically doing as much as I humanly can and paying for it later but when I view what I've been able to achieve, I still feel quietly happy and satisfied to have felt more like myself and 'normal' - even for one day. I think I might need another round of CBT!

    I lie to myself and others because I can't stand to look in the mirror, see someone that to all intents and purposes, should be out there making the most of their lives instead of working part-time and basically living only half a life (which I think others who see or know me might be thinking because I don't have a physical disability). I'm convinced others think I'm faking and don't understand why my personality has changed so much. I know it's foolish pride but I don't want people to think I'm lazy so I sometimes force myself to do things I shouldn't and spend the next few hours, days, sometimes weeks, regretting my actions and beating myself up psychologically.

    So, do I have any decent suggestions? Yep, I'd say, don't do what I do. Pacing is great but can be difficult to implement at times, especially when you're with your grandchildren so sometimes, you've just got to do what works for you, really get as much as you can out of the present, do what makes you happy, try to stay positive and like everyone has said so far, focus on being 'handicapable' (one americanism I'm starting to appreciate). Manage your pain and find ways to 'compensate' for the parts of your personality and ability you think you may have had to give up like work or special hobbies. I love Mayrose54 and Jaynief's ideas.

    Sorry about the rant. Wishing you all the best - oh, did I forget to say Welcome?

    Off to distract myself and prevent the day slipping into Grey!

  • Thank you so much glad to hear from you

  • Hi Chrissy, welcome.. I'm fairly new here too... Just few days. I was diagnosed in 1996 when I was just starting my career as a Dental Hygienist... It was Heart wrenching... And painful all the years I followed Dr's rx orders and still went to work. Most nights I called it having dates with the ice pack or heat pad....all I can tell you right now is listen to your body.. Rest when it says to.. And don't overdo anything or any chore... There is not one thing that has to be done right now but taking care of yourself! Peace, love, hugs, and warm support!

    Carrie

  • Thank you so much x

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