Cerebral Palsy
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Struggling on a daily basis and my depression is getting worse

happyfellahappyfella Member Posts: 132 Courageous
i suffer from chronic pain. I have two slipped disc in my neck and i have a should injury which cannot be fixed. I have had both injuries for around six years now. They were hoping to fix the shoulder injury a couple of years ago but two days before the operation it was cancelled as they were worried about losing me on the operating table. This was due to the slipped disc in my neck. I went for a second opinion and they told me that it could not be done as the risk was too high.

I normally have injections twice a year that give me around one month pain free. I am 50 years of age and no longer feel like a man. My wife does everything for and even ask to take me to the toilet due to the pain the stairs causes me when i hold onto the rail. At the moment because of covid it is not safe for me to have the injections. i have injections into my shoulder and i also have a dangerous one where they go through my neck under xray.

I suffer from depression because of my injuries. We saved for many years to buy a cheap caravan due to my injuries as it is all on one level and we would go there for a couple of days a week to give me rest. However, the sites are closed until March if we are lucky and i am struggling to cope.

Because of the pain that i go through going up and down the stairs i put off going to the toilet and can keep it in normally for around four to five hours. I was rushed into hospital a few months ago with kidney stones and the doctor told me delaying going to the toilet is not doing my kidneys any good.

Today i feel real **** because i am in so much pain. i am on naproxen and pregabalin i think it is called. I was on gabapentin but it was making me go to sleep and the pregabalin make me feel tired.

In an ideal world i would love to have a toilet downstairs but we do not have the money to build a tiny extension for a toilet. My wife has said about a stair lift but that would make me feel even more worthless.

I am just wondering how people deal with chronic pain. Everyday is a battle. I am not allowed to pick anything heavier than a bag of sugar up. If i try and do the hoovering it causes me so much pain. If i lift a plate up it causes me pain. I put off eating because eating causes me pain.

It makes me feel so bad watching my wife do everything for me. she never stops all day long. she reduced her hours at work so she could be here with me, so financially we struggle. My wife is always telling me to sit down whe i try and do something, and it kills me to see her doing everything.

I was under a great small hospital but because of covid19 they had to transfer all their pain management patients to a service called inhealth which i am not impressed with. they do over the phone consultations and they are going against everything that i have been taught for many years.

Has anyone got any advice of how to deal with chronic pain

Replies

  • woodbinewoodbine Community Co-Production Group Posts: 4,562 Disability Gamechanger
    @happyfella sorry that you are feeling so bad today, have you spoke to your GP about your depression? help is available if you ask. I know you talked about stairlift/extension the other day and tbh if I were you I would jump at the chance of a stairlift if it would make my life easier. I'm afraid all any of us can do is sympathise, we are not allowed to recommend medication as we are all different.

    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • happyfellahappyfella Member Posts: 132 Courageous
    I see a therapist for my depression, but due to covid19, not seeing one until after the new year and i will not take any medication for it, as i do not believe in it. A stairlift has been mentioned to me a number of times but having one installed would send me downhill fast. I am a very proud person. My depression is down to my injuries and how useless i feel. i am not asking for recommendation on medication i am asking how people cope with chronic pain. we did look at extensions but they are like £20,000 plus. in an ideal world i would just need a small one that is big enough to have a toilet in.
  • Ross_ScopeRoss_Scope Posts: 4,258

    Scope community team

    Hi @happyfella

    I'm sorry to hear that you're struggling at the moment, please always remember that the community is here to support you as much as we can, we all want the best for you.

    Are you able to manage your mental health? You mention above that you have a therapist but don't want to take medication, which is fine. Have you discussed the possibility of remote therapy? Over the phone for example?

    Have you ever asked your GP about attending a pain clinic to help you manage this better? you can find useful information here from the NHS, which contains details about how you can get help for your pain.

    I wonder if you've had a needs assessment from your local social care team? As they would be able to recommend support appropriate to your situation.

    I completely understand why you wouldn't want a stair lift putting in, I really do. It can be hard to almost give in to that kind of supportive equipment out of a fear that it makes you seem weaker, or less capable. I experienced something similar, all be it on smaller scale, when I was considering getting a cane. I put it off for a long time, but when I eventually got one I was surprised by the impact it had on me, if anything having that extra piece of equipment caused me to not have to rely on others as much, and gave me back some independence and confidence. But everyone is different, what works for one might not work for another.
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  • Paddyrooney62Paddyrooney62 Member Posts: 16 Connected
    I’m sorry to hear that you’re suffering this way. Surely there must be something that you’re doctor’s surgery could do to help with the extra help you need. They must have been in a position like this before. We’re they had a patient who was in the same position as you . There must be some referral methods. I suffer from Polyneuropathy in both feet . My legs and arms due to an accident 19yrs ago . I had major head trauma. Damage to my entire body to cut a long story short. I have a fantastic doctor who has had me tested after suffering for years. They diagnosed neuropathic pain. Severe nerve damage to my body . Initially I was given a diagnosis of neuropathy . After more nerve conduction tests it changed to Polyneuropathy because of the extensive damage. I have had to leave my job that I loved . I had severe depression because of it. I accepted counciling. My greatest battle was accepting that I was now disabled. Which took a long time. There is a lot I can’t do my mobility is very bad. But accepting my disability and understanding why I have depression helps . I try to think of my abilities which helps me get through I’m on a trainload of medication. But I ring my surgery and get call backs because of COVID-19. My family doctor listens . Please don’t give up hope. Ask your GP if there is a service that can assist you. Check the internet. Don’t accept anyone fobbing you off. God bless you. May you and your family have a safe Christmas and hopefully a much better new year 🙏🙏🙏🙏
  • Cher_ScopeCher_Scope Posts: 4,111

    Scope community team

    Hi @happyfella

    I'm really sorry to hear things are difficult for you at the moment.  The NHS being under such strain and subsequent delays in treatment is having a real impact on people with pre-existing conditions.

    In-addition to the brilliant advice you've already received, I'd suggest taking a look at this NHS 'Ways to manage chronic pain' webpage; it has links to various resources including specialist pain charities, online meditation techniques and self-help tips for persistent pain.

    I'd also urge you to think about whether aids and equipment could enhance your independence.  There's a lot of stigma attached to the idea of accessing help, be it stairlifts or canes, but they can add so much to our quality of life.  I understand it's a personal choice but try not to rule it out just yet.

    I hope you are having a better day :)
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  • janer1967janer1967 Member Posts: 11,239 Disability Gamechanger
    Hi I think I have answered one of your other posts 

    It may not be ideal but have you thought of using a commode at all just for urine or some other container that can be emptied to save all the trips upstairs 

    I had to use one for a while and it isnt nice coming to terms with it but you do get used to it 
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