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Ongoing pain and support with work

Francis49Francis49 Posts: 4Member Listener
Hi I'm new to  this group i have rheumatoid arthritis, fibromyalgia, diabetes, COPD had a full hip replacement as well as several other medical problems.  I work part-time had hours reduced several years ago and really enjoy this as the benefits include free medical insurance and getting out of the house talking to people.  My job is mostly chair Base.   My health is getting worse and my days at work are getting limited I'm just interested in what others do and how they cope with ongoing pain and any support you get.  

Replies

  • bambam Posts: 331Member Pioneering
    [email protected] welcome to the community my name is Bam. I'm really sorry to hear about all your health problems. This is a really great community with a lot of really great people in it. Check out the category list and find some things that may interest you.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Good morning @Francis49 and welcome to the community.

    Are your work helpful in listening to your needs? Perhaps it is worth a chat with them about what they can do to support you in what you may need in adjustments? 
    Scope
    Senior online community officer
  • Francis49Francis49 Posts: 4Member Listener
    At work they have been really helpful but like tonight I just in do much pain it's unbearable.  Will take pain meds then bed.  
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    @Francis49 - freeze spray, ibuprofen gel and hot water bottle(s) can help to alleviate pain.
  • Francis49Francis49 Posts: 4Member Listener
    Thank you I have ibuprofen gel and hot water bottles will try this and will sure look into freeze spray thanks again 
  • mossycowmossycow Posts: 486Community champion Pioneering
    I was just saying on another thread about chronic pain that I was just prescribed a chilli cream that kind of makes the skin warm and tingle... for small areas of more acute pain its been really good.

    I am so in awe of you managing some paid work. i was made redundant about 6 months before I got worse so feeling a bit stuck. The I realise how much it takes just to take care of myself i find the idea of any regular job and that scares me so much.

    Its so hard. I'm finding ESA frankly a disgrace..been too anxious to deal with it. hmmmmm....

    I need to write more positive!  I'm still grieving for my job. But am starting to do voluntary bits and I teach for an hour a week. Sometimes I cant do that but i have a flexible understanding relationship with my pupil. Some one introduced me as an 'ex-music teacher' the other day and it's just shaken my growing confidence and progress a little. It was on facebook to a new group of people I'm volunteering with.... she apologised and changed it but seeing it wrote down ... was like a punch in the belly.


    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Posts: 486Community champion Pioneering
    In terms of your question, I'm trying to think long term in terms of upping my skills. That used to be in the job training...now its  about my mobility and what can my brain and body still do and what new stuff can I learn..

    So when I whizz round town in my power chair I';m not having fun guys.... I'm actually doing career training..... heeheee

    So, I was a Secondary School Music teacher...and I cant ever see that happening again. [little pause for fighting back tears...] I spent my life wanting that job and expected my entire life to be that job... So. After a perspective changing meeting with my pain management therapy lady, lets called her Anne (cos that's her name..) I decided I needed to put more time into thinking about me and my work (instead of 'just' coping with housework and mummy).

    I thought.... What do I LOVE about my old job, my old life? How can I get that and contribute some of that but in a different form..... Anne says that the hole left by my old job wont ever be filled the same but I can put in lots of little things to fill in that gap.

    I wont list the bits I'm doing and plan to do as might be boring but when I think of them I think the important stuff coming out of it is

    * Getting used to doing things a different way - doing stuff with my left hand while my right hand drives my wheelchair, using toilet, transporting things, managing clothes. How do you dress professionally when you have to wear 5 cardigans and woolly leg warmers just to keep warm!?!? Moving round buildings, remember medication, self care and most importantly...

    * Pacing myself. Which is so hard. I want to be more predictable and more even in pain and energy rather than having on and off days / weeks

    *Meeting people.  I pushed myself to go to a craft group before Xmas in an xmas tent in town.... I met so many people! A lady who runs theatre and arts project charity in my area meet me... I was brave and tried to be confident in myself saying I was looking for voluntary work....and she said she'd love to have coffee and get me involved! I had a meeting with her...again so much like how to dress, could i take medication when in a coffee meeting, what if I crashed into her (new power chair), what if no seats etceetc.... but I thought, stuff it. I was terrified of her saying she couldnt use me, but more terrifying was if she offered me something and I had to turn it down because my body couldn't handle it.

    * Being open to new stuff...   So I met the lady...and she needs someone from a music background..... AND she's looking for help assessing venues so they are open to audiences of all different behaviours and abilities. Anyway...I'm her girl! Totally didn't even think of that!  Anyway, its really made me think there are opportunities out there i haven't even heard of yet.

    * People being understanding. Valuing me when I;m there and not hating me when I;m not able to be

    Target for 2016 was to have a voluntary position for an hour a week and teach 1 piano lesson a week.. To see if I can be reliable. I cant, Im not....  I managed about 60% of the sessions and that was fine as I was totally honest about that. BUT one week.... the class I was supporting, the paid music teacher was an hour late... And I took the class. The first time I'd taught a class in a wheelchair......ooooh it was so hard, clapping, playing recorder, managing 20 energetic 7 year olds...but oooooooh it felt like I was back home....  

    This year is all about me in the power chair.  I want to be into some community stuff...    Get better at getting the best out of my body... do some online stuff and I've changed the time of my piano lesson so its during the day and fortnightly.


    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Francis49Francis49 Posts: 4Member Listener
    Mossycow you seem to be very busy yourself and the idea of doing voluntary work is great, I need to be with people or I will just stay at home.  I work as an housing officer with people over 50 some with learning difficulties some with mobility problems and some independent and working.  I feel good each day however lately as soon as I get home I go to bed my body full of pain from my head to my toes.   The pain is intense I cry a lot but I don't want to stay in the house only  going to hospital and gp appointments I'm lucky I was able to reduce my hours and work at my own pace, however I feel I am getting worst and dread my future.  
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