Newbie here — Scope | Disability forum
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Newbie here

sarkat
sarkat Community member Posts: 4 Listener
Hi all, 👋 I'm new on here, was diagnosed with fibromyalgia 9 years ago after 5 years of suffering and tests etc. Had to finish work 2 years ago, would love to work again, but I struggled to do more than 2 hours a day when I last worked,  I have only just learnt to stop pushing myself ( still occasionally overdo it when I'm on a good day, then I pay for it🙄). I would love to here from people in a similar situation, your hobbies, and tips.

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 5,833 Disability Gamechanger
    Hello @sarkat

    Welcome to the community! :) I hope you are well?

    It'd be great to see you join us over in the Coffee Lounge. It's where we play games, have debates and get to know each other :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • sarkat
    sarkat Community member Posts: 4 Listener
    Thankyou for the welcome, I will
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Hello @sarkat. I can see @Hannah_Scope has already given you a warm welcome but I would like to add a warm welcome, as a fellow human also with fibro! How are you feeling at the moment?

    My hobbies are watching Disney, reading (the last word by Amy Price at the moment), and spending time with friends and family. What are your hobbies? I will look forward to hearing more about you and your hobbies, if you would like to share.

    I will not necessarily provide tips for managing fibro - I appreciate each and every one of us has slightly different symptoms and responds differently to different things. Therefore, what might work best for me might not help you, and so forth.

    However, the things which tend to help me are heat, pacing workload (with time for rest), and using to-do lists and post-it notes). Is there anything that usually helps you to manage your fibro? - other than not overdoing it (whenever possible), of course!  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • sarkat
    sarkat Community member Posts: 4 Listener
    @Hannah_Scope thank you for the welcome. Yes same here,  heat and pacing myself ( still not mastered that yet 🙄) I do make lists and plan around appointments or outings ,if I know there's a visit with grandchildren etc I make sure the following day is free to rest. I like to make things with my sewing machine when im havinga good day,  simple things that don't need me sitting at the machine for too long. I also enjoy baking although that's very rare these days. Life is now all plans for the simplist of things, things we used to take for granted before fibro. This weather atm is suiting me fine, cant manage hot weather and cold weather causes more pain, i also have raynauds and osteoarthritis.  Hope you are well today
  • Hannah_Scope
    Hannah_Scope Posts: 5,833 Disability Gamechanger
    @sarkatI am the same. If I have big things planned I have to plan time afterwards to rest up! What do you make with your sewing machine?
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • sarkat
    sarkat Community member Posts: 4 Listener
    @Hannah_Scope I make shopping bags, cushion covers, pillow cases, just made a cover for my dogs bed, and have made pyjama bottoms out of my favourite Jersey dress when it got too big for me, I've lost some weight  on weight watchers online recently as not exercising like I used to I had put a lot of weight on. I'm also enjoying growing herbs and some veg, something I never had the time for before but its another light hobby , I do miss going swimming, but it totally exhausts me these days, I live a short walk from a beach and used to love walking along the beach but as I have to climb up and down about 30 steps over a railway bridge to get to it I have to wait til my partner is home so he takes me in the car. I just miss the independence, of just putting my shoes on and going when I want, my head says yes you still can, but fear of getting stuck there and not being able to get back over the bridge is what's stopping me. Do you ever have times where you want to push yourself, just to feel it can be like it used to be before fibro?
  • Hannah_Scope
    Hannah_Scope Posts: 5,833 Disability Gamechanger
    So you are very skilled! I tried sewing when at school and sewed my blazer to my project... Don't know how  :D 

    We have some great threads in our Coffee Lounge that you may like. We have the Kaleidoscope gallery where people have been sharing their artwork and crafts. We've had members sharing their gardens. There's even been a recent thread on weight loss, healthy earing and exercise. I'm sure they'd love to hear any tips you have :) 

    I have those times a lot. I once pushed myself to walk down the road to my local Morrisons and ended up getting a taxi back. I then started pushing myself more when I had an extra £10 in my purse in case I needed to get a taxi again. Have you thought about asking your partner when he is on the way home? You could trying walking over, have some time to yourself and then he can meet you to take you back :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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