Do I or Don't I - Page 2 — Scope | Disability forum
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Do I or Don't I

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi Topkitten, how are things with you today?
    The problem is that although I have several chronic conditions, one of them can rapidly become life-threatening so they do need to check it out with blood tests in A&E.
    Having said that, yes, even with a new problem, they will often put it down to chronic ill health!
    Wishing you some bright moments today. 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Ah that's frustrating @Topkitten - Have you heard from your social worker since?  

    Also @Oxonlady I'm sorry to hear you've been in hospital.  How are you feeling today?
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi Cher_Scope, thank you for asking. I'm still feeling tired and rather fragile, hopefully things will improve.
    I hope you are well. 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Make sure to take it easy today @Oxonlady
    I'm with you on the feeling tired front but hoping a coffee in the not too distant future will help me push through!
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @Oxonlady, @Cher_Scope. Heard nothing from Social Care but the chair company called back, said they will arrange an engineer. Whether he/she will arrive before it breaks completely and sends me to hospital is up for debate. Hoping that I get an OT assessment and that isn't delayed.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Topkitten, wishing you all the best with OT assessment and chair repair! 
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    @Oxonlady Soory you spent yesterday at A&E and hoping you are feeling a bit better today

    @Topkitten Hopefully you will get your chair repaired soon it seems to have been going on for a while

    You both deserve to get dome positive outcomes soon
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Ty @Oxonlady. @janer1967, the chair broke a week or so into the Covid panic so almost 6 months, gradually getting worse and worse. Excuses have been long delay for parts, no one to take calls, no engineers working, etc., etc.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Yes the lockdown has caused issues with things like this but hopefully they are back up and running now and can do the repairs
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @Topkitten I'm happy you have an appointment for your chair to be seen to, at last!  Fingers crossed that goes ahead smoothly.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @Cher_Scope, I didn't say I had an appointment only that they would arrange an engineer to call me and make one. I suspect another unnecessary delay.

    Still nothing at all from Social Care so I decided I couldn't go any longer. I showered and now my back is killing me, which is odd because my problems don't cause back pain, lol! Everyone seems to think spinal damage = back pain but I always tell people to look up Referred Pain, which is much much worse than back pain, although no one ever believes me. Anyway, I shall see how bad I get tomorrow, which is when the real problems will kick in.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @Topkitten Ooft I'm getting carried away aren't I?!  Let's hope the appointment isn't too far off then.

    Do you feel fresher for the shower?  and what do you have planned for tonight?
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Yes thx @Cher_Scope, I do feel better but had to sleep a little to recover. I don't plan anything at all these days, I sit in the broken chair and either watch TV a little or go on the internet. Don't have much else to do. I did try reading but was too tired to concentrate. This is probably when it would be nice to have someone else around but I gave up on that idea 15 years ago.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Janer1967, thanks for your good wishes earlier. Been feeling off colour all day to be honest. Emailed specialist requesting further tests, hopefully she will be helpful. 
    I'm always hopeful that tomorrow will be better!
    How are things with you? 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I often wonder if anyone knows how to relax more when the pain gets worse and no longer permits sleep. Sleepless nights are becoming more frequent.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi Topkitten, severe chronic pain and lack of proper sleep are both problems I'm familiar with! I can't claim to have come up with any solutions. In fact I've been trying to see a specialist about my shoulder for months all to no avail. My reasoning is that if I can find something to lessen the pain levels overall, the nights won't be so bothersome. Well, I'm still hoping that there may be be an NHS doctor compassionate enough to try and help me, in the near future.

    Do you think anything can be done to assist you in reducing your pain levels? Have you tried seeing a pain clinic? 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @Oxonlady
    I was going to suggest a chronic pain clinic.  I wonder if you have one local to you @Topkitten that you could get a referral to?
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I was under the Pain Clinic for 5 years the, ofc, they made a mistake and have refused 4 referrals since. however, I couldn't go if I wanted to now, my MH issues would stop me entering the building.

    The engineer came and it turns out that the first engineer didn't know what he wa, ofc he didn'ts doing. when the chair broke the wood frame was also damaged so the new mechanism cannot be fixed to it. The chair will need to be replaced but now I have to wait. The engineer also said it isn't safe to use so now I have no TV, restricted to bed and this laptop runs on battery.

    OT came and added need of a chair to my report and sent it in. End of..........

    I told the woman I wouldn't get through the day because of the pain let alone the uselessness of my situation. I slept a little but no one called so I started an OD at 4pm, taking whatever I could keep down then rang 111. Then I got a callback from a "clinician" but all she did was argue with me, so I hung up and took more tablets. I'm gonna try sleeping again now. Hopefully I wont wake up.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    @topkitten hopefully replacing the chair will be quicker than a repair 

    You need to contact samaritans or crisis team to get some support with your mental well being 

    We are all here to listen 
  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi Topkitten. I'm very saddened to hear of your predicament. I tried to keep your spirits up somewhat but you are obviously overwhelmed and need professional advice and care. 
    I hope you do wake up and ring the Samaritans or Mind. Don't give up. Maybe you need antidepressants for a while. Sometimes they help with physical pain as well... 

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