Struggling with cp

[Topsy270]

Hi I am 36 years old I have mild cp. And dyslexia.

I am am struggling as I was once mobile and now I use a wheelchair and crutches. I am struggling to stay at work and maintain what mobility I have.

I don't know anyone else like me. I have had lots of operations over the years. I rely heavy on crutches but due to a injury I am now struggling. I find when I go to work all I want to do is sleep when I get home.

I have recently become single and finding dating with a disability hard. I want to chat to people like me.

[AmyLew]

Hi.

I'm 35 and have Athetoid CP, although am not working at the moment know it was tiring and was only part time, frustrating. My mobility, has always been with the aid of a walker and wheelchair but seem to rely on the latter more these days. What do you do? Are you full or part time?

Sorry about the breakup of your relationship.

Be good to talk if you want to?

[Topsy270 in reply to AmyLew]

Hi I am 4 days a week was full time but dropped a day when I had my injury.

I am really struggling as I have poor mobility and I also have injured my neck , shoulder and Arm.

I don't know anyone else with cp as for breakup I left that as abusive .

[Dusty59]

Dear Topsy270

I perfectly understand your concerns, I have wroked full time for the majority of my adult life, and it is true because of our condition it does make you very tired. But I would hang in there in relation to your job, unfortunately the life of work does have it's ups and down, at the moment you are in a down situation but I am sure if you hang in there things will improve,

If your in a position to you may consider changing your job, A new job may bring new enthusiasim and give you that boost you require.

A break up in a relationship is all ways hard and when you are single you all ways feel that will never find someone else. When I broke up from my wife in 2001, I didn;t find my next partner until 2004, but we have now been together for ten years.

I didn't actually get married until I was in my thirties and did not find the person I have been with the longest until I was in my forties, so I am sure you will find the right person, it may take a while but it will happen

Dusty59

[Topsy270 in reply to Dusty59]

I do understand as my job gets me out the house and helped with my breakup being at work. It's the pain and being tried all the time I struggle with.

[Dusty59 in reply to Topsy270]

Hi Topsy270

I certaintly appreciate the difficulties with tiredness, I to get very tired and by the week-end, i am just fit to drop, you may wish to consult your GP about the tiredness to see if they can offer any advice, In relation to the pain as your GP describe you any medication to help with the pain, some GP's perescribe Bacolfen to help

Dusty59

[Topsy270]

Thank you I am often at my Gp. I think my main problem is dealing with disability and a injury at the same time .

[jackie6 in reply to Topsy270]

I can relate with you on this. I have mild CP on my right side, Epilepsy due to the CP, musculoskeletal problems continually for about 3 years now, almost just after a tendon op and I work full time. Also my husband has secondary progressive MS, so I am dead beat ALL of the time. So come the weekend all I do is basically nothing but recharge my batteries. Which is generally pretty boring!😔

[Topsy270 in reply to jackie6]

I have just had surgery on my neck. And has not worked . I am going to have to give up work . Telling them today. I need to put my health first.

[rcwallace21 Administrator]

Hi there,

Thanks for posting and it's great to see a variety of replies.

Just to add to the comments above, I find swimming really helps with my stamina. I also take baclofen, cocodomal and lidocaine plasters for pain. I have also received help from a personal trainer to help me with my fitness. I also try to rest when I have a minute. Everyone is different so you have to find what works for you.

Hope this helps.

Many thanks,

Rachael

[emma38]

hi i am 38 i have mild cp and scoliosis i fall a lot and use crutches for 8 years which i hate using . i thought it was only me that feel this way. this last 18 months i have been so tired. so i know how u feel . i have also fallen and broken my fingers . i do really get i you down

[Topsy270 in reply to emma38]

Hi

Thank you I don't know anyone with CP so it has helped me. I am having a hard time trying to stay at work.

[emma38]

i was told at 18 that i could work . so it really hard for me because i fall and end up broken bones lol . i don't know anybody with cp myself. so when u wrote all the things i was feeling . It made me happy because i thought i was getting upset over silly things like getting tired easily in pain all the time . so thank u for reply to . and hope to talk soon .

[Topsy270]

It's ok my pleasure it's hard for me too.x

[Topsy270]

How is everyone? I am still struggling have a operation on my neck soon for pain. Still at work buy thinking of giving up as really finding it hard

[jackie6]

Hi Topsy270,

I'm so sorry to hear that. It must've been awful for you today! In a way was there not a big weight off your shoulders too though rom the pressure from your work? I'm also sorry to hear about your failed ops.....very disheartening And upsetting. My work's been great up to now, especially my boss, she's brilliant, but to be honest I don't know how long they'll continue to show their kindness. I've already had a sick report done this year, so I decided to take annual leave when I was unwell the next few times! Chin up and keep in touch!

jackie6😊

[Topsy270 in reply to jackie6]

It's been the hardest thing I have ever done. Feel like my body is giving up. I have struggled for 10 years. And the injury I had at work was the final straw. I am feeling a failure right now even when I know what could I do. I am just scared of benefits etc. Hope your work continues to be OK too .

[jackie6 in reply to Topsy270]

🙋🏼 Sorry it's been a wee while, was just wondering how you've been lately, been thinking about you? Jackie😊

[Topsy270 in reply to jackie6]

Hi I am struggling had to give up work . Seen the consultant yesterday and nothing more he can do for me now. I need to see pain management team for coping with chronic pain. How are you?

[snootsiegirl]

Me, too Mild CP lost a lot of mobility, in a wheelchair, mine is right side affected. Lost my job and you are not alone..