managing!! what is that??

i am told i am not bad enough for home help as I "look alright ". tonight as usual i started dinner - well i could not cut the vegetables or peel potatoes, gave that up and tried to get frozen food out of the freezer - it was too cold and painful to rummage. change of plan - tried to open some tins, electric tin opener broke so i tried the manual one - guess what- i could not open the tins. What are we supposed to do??

I tried to do everything right yesterday, but still had a bad night. today I have been sat out in the sunshine. please, please let me have a good night tonight!!

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  • thanks Jules58. when I am settled in my new home properly, i will ask for an assessment, the last one was some years ago. Yes I do get DLA as i have other 'problems', just hope i can keep it now!

    the sun was lovely! felt like having a sneaky drink (which i am not allowed anymore) .

    hope you have a good nite too! xxx

  • Hi Gypsycrafter

    Sorry to hear of your frustrations with household simple items which become big items of frustration when your hands, fingers and arms are also in pain with the Fybro. I thought one comment left for you was great-re getting in touch with your O.T. - Ive recently had some more grab rails fitted in different rooms, a bath seat, and an adjustable bathroom chair for ease of my carer washing my hair for me. This condition comes with soooo much frustration, and with me being a crafter (home made fancy cards) its sometimes so very frustrating with your arms ache, your fingers wont hold steady or ache too much to get the task done I want to do, and being such an independent person, these illnessess really has tested my patience (guess Ive learnt my own way, like every on here will have done too). I also wondering if you have a Social Worker-reason I ask is I was assessed for care requirements and am funded by Social Work via something called Direct Payments to have a carer at the times most needed (I chose to use a care agency). Anyway I dont know what part of the country you are in and what the system or other organisations are that would be relevant. I have tried so hard to keep my independence, but I cannot clean my house anymore, do the garden, or walk very far without support, so I am just throwing out ideas incase they are of any help to you.

    I so hope that you find some joy through getting some aides and adaptations mentioned in another comment I noticed, to make things easier for you and less frustrating. I am a newbey on here so am hoping to get to know a lot of people on here. I think the sites a great idea so all of us living with pain can support each other and have a nice support group where we can be there for each other.

    Hoping today is going to be much less fraught for you.

    Warm hugs

    Tiggerooo X

  • good morning tiggaroo, I make cards and things when possible - hence the name. had bad ibs last night which sent my heart into AF and ended up not going to bed till it had subsided around 3am but ok now after some sleep! Someone suggested direct mayments a while ago and i might end up going down that route. I can clena to a degree to keep it ok, and with ocd my brain tries to tell my body it ahs to be done! Tell u wat - at least we can sound off on here and everyone undersands! what was the subject again!!! lol

  • SEE u sat out in the sunshine-----did u close your eyes and feel the warmth of the sun caress your body-----was it nice-----even for a short time. Did u manage to take the time to realise how good that felt

    We all need to live one day ,one hour at a time or at least remember to enjoy whatever gives us some comfort.

    This will allow u the strength to get on and fight for all those other things that u know u should be entitled to do.

    P.S ----l hear there is more sunshine on the way.....good luck

  • ooo yes it was great! and yeas please we wil have more of that.

  • Hi unfortunately with fibro you cannot know how you are going to be you can sit all day and be in awful pain the next few days or do things and be the same we really do have to take a day at a time . you take care love to you Diddle x

  • xxx

  • Hi there gypsycrafter,

    The things like cutting veg, opening tins or bottles, doing my kids hair and teeth, plus many more make me so mad that i struggle to the point i flip.

    people dont realise how lucky they are that they can do all these things without even thinking about them.

    Even just folding washing takes me longer as my stupid hands just wont let me do anything fast as i drop everything.

    Hope you do have a good night.

    kel xxx

  • thanks Chris, hope you have a good night too. xx

  • To be sure every day is a challenge. There are very few people that realise how the pain levels get and the meds are not capable of coping with them other than the fibromites in the same shoes. Night night all xox

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