Not Coping — Scope | Disability forum
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Not Coping

reenieglen
reenieglen Member Posts: 4 Listener
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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Comments

  • EmmaB
    EmmaB 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_Scope
    Adrian_Scope Posts: 8,578 Scope online 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? 
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  • reenieglen
    reenieglen 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!
  • EmmaB
    EmmaB 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_Scope
    Adrian_Scope Posts: 8,578 Scope online community team
    Hi @reenieglen. I just wanted to check in and see how you are?
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  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    Hi sorry uou are going through this i used tobeotk in boots  pharmacy  I see that you said you take codine I have lupus and I used to be in so much pain  and I was takeing codine  at the begining  it was great but then after takeing it for about two months  I seemed to be in more pain especially  first thing in the morning I couldn't live with out them I had to have them then installed working at boots and the pharmacist  asked how long I had been takeing codine  I explained and he asked if he could talk to my doctor  I found out then that I was in pain all the time because I was addicted to codine  I was weaned off them  snd I don't tske them now I am not in so much pain now  and have had pain management and I have got used to a new way of dealing with it I have a new dr now and I am under a lupus specialist now which has helped alot some drs think its just easier to give pills butvits not always best  I found I could cope better I felt better and feel happier now I hope that you will get the help you need  and there are people you can talk  to on here  merry Xmas x
  • cupcake88
    cupcake88 Posts: 1,240 Pioneering
    @reenieglen hi there I just want to say every one on here is supportive and hear for you so your not alone . I don’t have children I have a dog but I can’t even walk him due to my illnesses . I can’t imagine what it’s like to have two young kiddies and be in so much pain. 

    I’m guessing as well even if you have strong pain killers if they knock you out that’s no good either if your going to feel drowsy all the time . 

    It’s great that your husband is on days for the time being . Do your kiddies go to nursery is that possible do they still offer free places ? I’m not sure as I don’t have kids . 

    I suffer with mental illness but a side effect of my meds is that my muscles really cease up and the pain is unreal . I personally struggle when my partner works late shifts as I hate being on my own especially when it’s dark my anxiety gets so bad . So I can relate in some ways and always hear if you need to chat . Hope you have good Xmas . 
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    We are  all here to help  and to talk that hoes for every one on here its been years since I have had anxiety attacks but I have had three in two days 

    The more I hear about the corona virus and whats happening in the UK and people getting stressed about presents they haven't brought and I feel sad  

    Then looking through Facebook I see the amazing things people are doing and what happens in my own village to get presents for the children  

    I am also scared of the corona virus not just for me but my family my friends my mum its taken along time for me to get over the corona virus and I had itcin March 

    Whilst writing this though and knowing people will read this  I am laughing at myself  for being a silly Billy and asking myself why am I stressing I cant change whats happening  I am keeping myself safe  I know my family are ok I know my mum is as ok as she can be as she has dementia

    So I don't need to stress and make myself poorly lots of people are pulling together  to give the best Xmas to people and I know that this virus is the worst thing ever and people are dying most people pull together and follow the rules but the good thing that has happendis people pulling together to make a Xmas  for people  all across Wales 

    I think that its amazing  so I hope now that we stand together to follow the rules  and get this corona virus gone so I have no reason to stress  because compared to some people I have a good life and I have people to talk to  and I am here for others if they need to talk  and talking is good as I said I am laughing at myself now ha ha 












  • Ross_Scope
    Ross_Scope Posts: 7,493 Scope online community team
    It's definitely important for people to pull together @lisathomas50, especially at this time of year. We all need to play our part to get the virus out of our lives for good. I hope the anxiety attacks become less frequent as they were before the last couple of days, hopefully you are able to manage them.
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  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    I have learnt to cope with them  I laugh at myself because I am stressing over something I can't do anything about i  can't stop people panic buying or traveling I can't make them protect lives  all I can do is keep myself safe  I get annoyed  because this isn't a game I have friend on the front line hanging  by a  thread  and people don't listen   why should I waste a panic attack on people thst just do what they want  ha ha  I am good I am ok  love being on here it gets me through and I can rant in a positive  healing way 
  • Ross_Scope
    Ross_Scope Posts: 7,493 Scope online community team
    I'm glad you're enjoying being on the community @lisathomas50, we certainly enjoy having you here :) 
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  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    Thank you  since I been on here I keep flattening my battery lol ha ha 
  • Ross_Scope
    Ross_Scope Posts: 7,493 Scope online community team
    Oh no @lisathomas50 :D You'll have to make sure your charger is handy from now on :) 
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  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    Well I have been on here an hour already and I need to get off my phone for at least half hour I am expecting my scope job support phone call soon ha ha otherwise my mind will be on whst do we eat on Xmas day lol ha ha 
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    @lisathomas50 ooh do let us know how your job support phone call went  :)
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  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    Hi I am so excited  my job support  phone call went well  they passed me onto the well being one which is still scope in Cardiff it was amazing I got referred and ten mins later Emma phoned me 

    We had a fab chat and had to tell her a bit about myself  and what sort of job I am looking for  I have been registered now I made her laugh I said I will work for scope doing what she does ha ha 

    I will have another phone call from tom on 4th  of January to discuss my options  and what training is available  and today I have  asked to be a panelist so waiting to see about that aswel 

    I have been trying to catch  up with the welcomes and managed to do family fortunes  so its all go lol ha ha I feel fab I have purpose now and something to look forward to  thanks to scope and I love being on here and talking to everyone  its great 

  • cupcake88
    cupcake88 Posts: 1,240 Pioneering
    what’s job support , 
  • poppy123456
    poppy123456 Member Posts: 31,336 Disability Gamechanger
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,790 Disability Gamechanger
    Hi cupcake 88 job support is realy good they help and duport you to get a job or should I say find ajob based on what you have told them about yourself  and what job you are looking for

    I live in Wales  so I have been referd to the well being  its still part of scope  and Emma who I spoke to said that they will be able to help me with training  or short course  and help me find a job in wales  

    You have an initial phone call once you contact them and they tske your details and they ask you a few questions   then they make you an appointment with another person I have one with Tom  who then does other things with you  and helps to match you to a job  I eill speak to Tom on 4th of January  so I will let youvknow what happens after that 

    I feel better in myself now and I have something to look forward to and being on here is great I love it but everything scope do is truly wonderful  and glad I got to here  
  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    I'm so glad you've had such a good experience with the team @lisathomas50 :) You'll definitely have to let us know how you get on after you've had your call on the 4th! I hope it goes well.
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