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Becoming Disabled

DragonslayerDragonslayer Member Posts: 634 Pioneering
Hi there
Back in the days when I was an able bodied person. (About four years ago) Like most back then and many still today I didn't fully understand what being (Different) was. Like most I just got on with my life and thought nothing of it. 
Being a man and having pain now and then was something I just put up with. After all that's what being a man is all about isn't it? Now just walking from my living room to the kitchen is hard, painful and I need to use a walking aid. (A crutch in my case) In the house anyway. A walking frame outside.
Now I find myself constantly thinking and yearning for the days when a short walk outside, or for a cup of tea, or a beer from the fridge was not a thing to fear or dread, but instead just something I did as a matter of fact. Now I sometimes feel sorry for myself.
I say to myself there are others out there far worse than me. What about those that have put up with these things all there lives? But I should stop thinking like that shouldn't I? Because it doesn't help does it?
This lockdown is hard for everyone, but if you are able bodied stop moaning about not being able to go out!
I know thinking like this does not help. But like many, maybe most, I'm not sure. 
I'm. OK. I'm not going barmy. Just writing down and sharing some thoughts.
But I do take my hat off to others worse than me. 
Thanks for listening
Dragonslayer.




Replies

  • janer1967janer1967 Community champion Posts: 6,298 Disability Gamechanger
    Hi @Dragonslayer Welcome to the community and for sharing your thoughts with us.

    I can empathise with your thoughts becoming disabled 3 years ago with no warning one day my leg was here the next day gone but taking my leg saved my life 

    I too miss the little things I did that I took for granted but you just find a new way of living and after adjusting to the situation things start to improve.

    Take care and stay safe 


  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Hi Pollyanna / Janer
    Thanks for listening and replying. Since being on here I feel I have made many friends and it's good to listen to the views of others and the support they give. I believe to 'vent' and have a good moan now and then is a good thing. Everyone in this country loves a good moan after all, especially about the weather!
    Feeling sorry for yourself now and then, even if some able bodied people find it tiresome to hear is also a good thing (it's called being human) and God alone knows there are many on here that have good reason to do so. 
    Thanks to all and stay safe.
    Dragonslayer



  • ricky1040ricky1040 Member Posts: 99 Pioneering
    Hey mate. It is hard when your life changes. All you can do is make the best of what u have now. Find new interests and try not to dwell. Its easy said harder done but youll get there
  • gillian72gillian72 Member Posts: 276 Pioneering
    @Dragonslayer,I know how u feel I was the same as you  riding my bike 10-12miles a day running round pick up after my kids multi tasking as us women could do lol till pain arfthritis took.over all my joints in my body and health problems I spent yrs telling myself how dare I moan when there's children an adults far worse then moaning old me its fantastic to see or read about the kids on here never let anything get in the way of. doing whatever they want to do in. life an it's a breath of fresh air to see or hear about on here joining up to scope was the best thing I've ever done I think of everyone that I've talked to as real friends no matter if ur having a good day or bad u will never be judged anyway I need some ugly sleep lol take care. An safe  nite😜
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Thank you for sharing this @Dragonslayer, you certainly are not alone in feeling this!
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  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Five months after having my pre operation MRI scan cancelled because of the virus I finally had it on Tuesday. So now after 5 years of my disability I am hopeful the surgery to help solve some of my problems is getting closer. I won't go into all the problems and scares I have been through over those years, for I know many others have  been through similar things. But I am hoping some of the pain will be soon be over.
    I also hope others out there receive similar news. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,045 Pioneering
    Hi @Dragonslayer
                                  Thank you for sharing your story with us. I'm sorry to hear of the struggles you face and hope that following your good news regarding your scan I hope your surgery is soon and makes a positive difference to your life. Everyone has bad days, I find that these can help us to move forward as once you have had chance to process how you are feeling you are able to reflect on the positives and negatives of a situation. You are not alone in how you are feeling. Thank you. 
  • neuromum4neuromum4 Member Posts: 67 Courageous
    Hi all, thanks for sharing. You all brought tears to my eyes. I am disabled too. I have had neurological problems for 17 years and in 2018 my bladder stopped working.
    I was at uni and I continued to go to practice,class and juggle 4 children and running a home. I was always busy and helping others. One day In Jan last year, 15th to be precise I woke up and could not move my waist and below. Over the years I have had many symptoms. I got them all at once. After a few hours I was able to move. So fatigued and drained all the time.
    I had a neurophysiotherapist come to my home to help, the exercise made me worse! 
    I would end up in bed with no energy for days.
    I progressed very quickly and was extremely anxious because I was in limbo. I really thought I was going mad.
    I am in a wheelchair, I have a carer who washes me,dresses me etc. I found it so hard for other people to help me.
    I feel like a burden to my children, mum is always too sick to do anything. I look around at my home in frustration, I just want to clean but I can't I have servere OCD too.
    It so scary when you don't know what's  going on and your gp throws every sort of medication at you.
    It's hard to depend on others. This has been a huge transition and was very hard to accept at first. Over time I learned to live and accept the new me as hard as it is.
    I am sending you all positive vibes so hard to stay strong but we have to. 
    V xx
  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Hi there
    After reading some of your posts it makes me think that all I am going through pales to nothing besides what others out there have to deal with. I'm 67 and spent most of my life able bodied. Now I have been disabled for about 5 years and understand a lot more about life and all It entails. It has taken me nearly 3 years to come to grips with my problem and after having many "Dark" thoughts along with much feeling sorry for myself I have finally come to terms with it. That does not mean I like it, or accept it. But now I try looking on the brighter side of life. 
    My disability came on slowly and after a few years of having what I thought were "Normal" pains and trips to the Doctor. I ended up spending much time visiting hospitals, sometimes 3 trips a week.
    One time it was for suspected lung cancer and all that entailed. Another was a big operation for an anurisum found while a had one of many MRI's. (That did at least save my life.)  C. T scans, Xrays, blood tests and other tests I now forget. 
    Result now is, hips have gone, lower spine fused trapping nerves, legs won't work properly, can't stand up straight, constant pain. 
    I'm waffling now so I'll stop. Many thanks for listening.
    Stay safe. Love to all.
    Alan


  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    edited July 2020
    @Dragonslayer, however we feel about what restricts us always feels worse than what anyone else has because there is no real way to compare. You simply cannot experience anyone else's problems. The problem with pain though is always difficult to quantify and I often get people comparing their bad backache to my spinal nerve pain and thinking that they understand. Ok, so they may have a bad time for a little while and pop a few pills to clear it up which is nothing like taking 20 pills a day, swigging Oramorph and I also should be using Fentanyl patches but they wont let me have the patches back. All this lot does is take the edge off so that if I lie back in a recliner chair with my legs raised 20+ hours a day the pain drops to a mere 4 out of 10. Getting drinks and food is awful and the stick I use (should be 2 but that causes different problems) and the frame I cannot manage now and the wheelchair my place cannot be used in and all because this is "just pain". I often wish there was a definitive scale for pain and definite causes and reasons for the level of depression and other assorted problems that go along with disability so that people better understand how each of us is affected.

    Like you I was a healthy and very active person and, I believe, a good dad to my kids but all that has slowly evaporated over the last 14-15 years.

    Try to get referred to the "Pain Clinic" because they can show you many ways of limiting the issues caused by pain, most of which are exaggerated by trying to be "normal" as much as possible.

    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.
  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Thanks TK
    I fully understand what you say. I am on those patches along with many other painkillers. I also have a recliner.
    I will look into the clinic you mention.
    It is impossible to explain to others what pain is like. I read a fore note in a book many years ago. A quote I have never forgotten.

    The slightest pain in your little finger, causes you more worry and anxiety
    Than does the death and destruction of thousands of people.




  • Denise11Denise11 Member Posts: 98 Pioneering
    Dragonslayer  Thank you, you're one in a million!  I'm a trustee for a disabled charity and attended different meetings and meet different people who have become disabled, during their lives.  So, I sit there politely listening to them thinking 'been there, done that, got the t-shirt'. 
    It is good to talk to people who are like you and have a real winged to get things off you chest, never forget that.  That is something we all need on here.  Storing things up isn't good all the time and that is what Scope is for.
    You have slept out how you feel and from that I can tell, you've thought about you situation and fully understand what disability is like, and still think of others that are worse off then you. God bless you. Denise11 
  • Francis_theythemFrancis_theythem Member Posts: 110 Pioneering
    Just because there are others who are worse does not make your suffering and your pain any less valid.

  • neuromum4neuromum4 Member Posts: 67 Courageous
    @Dragonslayer we all have different levels of pain and how we deal with our health etc, don't ever think that because others may seem worse than you that your struggles and pain are not valid.
    We can't really compare because we are all different. We can only share our experiences. Sending you positive vibes and big hugs xxxx
  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Pain is something that is impossible to describe. 
    Anything said to others about how it feels can on!y be referenced back to their pains, like having a sore back from over working in the garden for instance 
    Trying to describe how it affects our lives and how debilitating it is along with the fact that it is always with us, is also extremely hard. 
    People like us have to live with it day to day, knowing that not only does it not go away, but gets worse over time.
    How impossible is that to describe. 
    I sometimes think it would be great to magically transfer the pain to others, just for a short time  so they could
    feel it and know what we go through. Then they would finally understand. 
  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    I have been given a new date for my back operation. November 4th. I'm worried about it, not just because of the virus, but It is a back OP. and not easy. Hopefully all will be OK and Finally I will get some relief from the pain I have. 
  • chiariedschiarieds Community champion Posts: 6,339 Disability Gamechanger
    I hope all goes well for you @Dragonslayer - to think your pain may be alleviated is wonderful. Some trepidation with any op is to be expected, but remain positive. :)
  • 66Mustang66Mustang Member Posts: 3,827 Disability Gamechanger
    @Dragonslayer I hope it goes well and has the desired outcome of reducing your pain levels. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Wishing you all the best with your operation @Dragonslayer! We're here if you need anything. :) 
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  • Tori_ScopeTori_Scope Community Team Posts: 2,780 Disability Gamechanger
    I'm also wishing you all the very best for your operation @Dragonslayer :) 
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  • DragonslayerDragonslayer Member Posts: 634 Pioneering
    Thanks to all for you lovely comments. I will take your thoughts with me on this journey.
    The NHS have arranged for me to have it in a private hospital. Probably because I have waited for so long and the professor I met with in my last appointment works in both private and NHS. 
    And It is the same hospital where I had a full knee replacement a few years ago.
    Fingers crossed the virus, now rampant won't stop it again.

    Thanks again
    And good luck to you all.

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