Disabled parents
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Not Coping

reenieglenreenieglen Member Posts: 4 Listener
edited May 5 in Disabled parents
Hi, I hope someone will read this! I’m feeling so low and in extreme pain all the time with a 3 and 5 year old at home without any of my usual support. Even with support I struggle to manage the pain (usually only leave the house to walk kids across the road to school then have to rest until pick up) and now it is getting worse every day...I feel so alone and today I woke up in so much pain I feel like I can’t go on like this. My husband is a key worker working nights. I’ve asked if he can discuss with them that I have a disability and can not continue to manage the kids but he doesn’t seem to think it’s possible. I don’t feel like he understands how hard it is to be in pain all the time and have the kids. I don’t know anyone in a similar situation so hope someone can offer some advice or support....
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Replies

  • EmmaBEmmaB Member Posts: 263 Pioneering
    Hi @reenieglen

    I'm not surprised you are finding things difficult at the moment being holed up with a 3 and 5 year old without your usual support, very tricky.  How you feel psychologically will most likely be directly impacting on your pain levels as the body and mind are inextricably linked...

    You don't say anything about the cause of your pain or whether you've previously seen your GP or even a pain management team about it, but you might find some of the suggestions in the article I recently wrote for Motability Lifestyle helpful, see from page 41:

    https://live.editiondigital.com/e/201mppqns/lifestyle-106#!page41

    There is a lot you can do to manage pain but it does take commitment and most strategies are not quick fix.

    Unfortunately the solution is rarely found by taking 'pain' medication long term and in fact they have been found to make pain worse by increasing sensitivity to it - if you've been on pain medication for a long time or are on a high dose you may want to speak to your GP about reviewing this, some GP don't know much about pain management so if your GP is reluctant to consider any changes you can always ask to see someone different.

    I hope that helps.

    Emma
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,121 Scope community team
    Hello @reenieglen. I'm really sorry to read you were having such a difficult time. Has your husband been able to adjust his shifts at all? 
    Senior Community Partner
    Scope
  • reenieglenreenieglen Member Posts: 4 Listener
    Hi, thank you for the replies!

    @EmmaB I’ve tried just about everything in regards to pain management and nothing has made much of a difference. I had a spinal fusion for scoliosis about 20 years ago and the pain gets worse every year. I found your article really helpful - thank you! I had been taking quite allot of codeine and the article helped me realise it was starting to cause problems so I’ve stopped taking them for now.

    @Adrian_Scope my husband doesn’t have to work nights for now thankfully. But he’s about to start 10 days in a row, some of which he won’t be home until very late. I’m not sure how I’m going to manage it but at the moment I’m feeling a bit more positive about getting through it!
  • EmmaBEmmaB Member Posts: 263 Pioneering
    Hi @reenieglen
    I'm glad you found the article helpful.  I hope coming off the codeine improves things, there's a nice, supportive, closed [ie you just need to request to join] facebook group called: Opioid, Gabapentinoid, Antidepressant Tapering Support Group
    which you might find helpful as most of the people on there have experience of coming off opioids, readjusting to life without them and realising the benefits of not living with the side effects!  The group was set up by Louise who featured in the article.
    Best wishes.
    Emma
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,121 Scope community team
    Hi @reenieglen. I just wanted to check in and see how you are?
    Senior Community Partner
    Scope
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