Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Struggling with a diagnosis

louisajayne73louisajayne73 Member Posts: 1 Listener
edited November 2019 in Disabled people
Hi I'm Louisa from Manchester x I was recently diagnosed with degenerative disc disease, had to be retired from work against my wishes and just struggling with the diagnosis and the condition and the pain etc and just struggling with life at the moment... does anyone else suffer with this and have some advice for me for coping? Or anyone else with any good advice? Would really be appreciated thankyou 

Replies

  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Hi @louisajayne73 and welcome to the community! I don't have Degenerative Disc Disease myself, but quite a few of our community members do and I'm sure they will be happy to share their experiences with you and offer tips on how to manage the condition.

    Having been diagnosed with a few new conditions within the last 2 years, from what I have learned is that coming to terms with a new diagnosis takes time. The process is very similar to the 4 stages of grief: denial, anger, emotional, acceptance - these 4 stages can happen in any order.

    I think it's important to take one day at a time. Pace yourself.

    We are always here if you need anything :)
    Disability Gamechanger - 2019
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,923

    Scope community team

    Hi @louisajayne73, I just wanted to say welcome to the community and I hope you'll find some support here. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • livefortoday1988livefortoday1988 Member Posts: 2 Listener
    Hello Louis a, I have the same condition as you. Trying to get back to part time work seems impossible. This is due to chronic pain 24/7. Been out of work for three years now. Try and take each day as it comes. It is hard when the pain killers stop working. I then use my tens machine instead. I find one of the difficult things is that people don't understand the levels of pain us the suffering are going through 24/7 as there is really not much relief from it. I am sure you understand this. 
  • April2018momApril2018mom Posts: 2,869 Member
    Hello @louisajayne73

    Try writing down things in a notebook. It helped me during my first year of caring. Are you seeing a therapist? Also get some me time. It does make a difference ultimately. Take a pen and a list of questions to ask the doctors at appointments. Me time is vital. Even if it is five minutes eating a cupcake or sleeping it counts. 
    Have you applied for benefits or not yet? The important ones are employment support allowance and personal independence payment. Ask your local citizens advice bureau if they can help you fill out the forms. Answer all questions and give relevant examples.
    What do you find hard to do? 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @louisajayne73, how are you doing today? I know it can be so difficult to come to terms with these things, but it does happen.

    I hope you will enjoy being with us on the community and please let us know if we can do anything to help. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi, LouisaJane, I`ve been disabled many years. I`m 67 and finished work through ill health when I was 47........so 20 years!

    I was previously a very active, busy person, who loved life.

    I had to learn to slow down, relax and take it easier....Easy to say, but hard to do. I also had pain to deal with.

    I did any things over the years to fill my time...reading, writing short stories, made greetings cards, quilts, rag dolls, gift boxes, painted stones.

    Find the best pain killers, take them religiously, breathe slowly and listen to your body. NEVER beat yourself up for being ill. We didn't ask for it. We don't like or want it.

    But we HAVE to live with it or go under.

    Some days it will be a bit easier to cope. If you`re having a rough time for longer periods, pace yourself, never accept an invitation if you know it will cost you later.

    YOU are the most important person.....you listening to this knock kneed knackered  old granny?
    xxxxxx hugs xxxxxx

  • paffuto10paffuto10 Member Posts: 388 Pioneering
    edited November 2019
    Hi @louisajayne73
    How are you doing today? 

    Yes, listen to my friend Polly "knackered old granny" above, which I'm sure she is NOT really! :D  :D

    My advice is to try to be honest and tell others when you are feeling rough. 
    I tend to say to my family when they ask "oh, I'm fine thanks" when really I'm struggling. 

    I didn't realise how ill and struggling I looked until last week, when daughter pulled up alongside me and kind neighbour opened the car door and was helping me to get in. 
    And even then I was saying "it's ok thanks, I can manage"! 

    So my tip (and I need to do this myself too) is accept help and also let others know how you are feeling. 
    In real life and on here x
     
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @louisajayne73, how are you doing? :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
Sign in or join us to comment.