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3 yrs physically disabled now. When will my brain accept this?

reeniereenie Member Posts: 23 Courageous
Before my spine gave up on me I used running to help control my mental health. 3 years later and I still physically crave going for a run. I can't even walk more than a few metres before my spine refuses to cooperate and my legs go to jelly. But my brain , my damn brain , can not accept this. I keep trying to beat my disability but instead end up in a worse state physically and mentally.
When does acceptance happen? When does that internal desperate plea for my old life disappear? 

Replies

  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,307 Disability Gamechanger
    It took me a decade to accept that I had a disability, and even now I sometimes doubt it. Reality usually kicks in if I try to over do it, and usually quite hard.

    I used to regularly walk 6 miles to work, do a 12 hour shift and walk home afterwards. On a good day now I might be able to do 1/4 mile before I start to struggle, and seriously struggle shortly after that. In the middle of the night when I cannot sleep my mind wanders off to some of the holidays I had as a young person. In some ways it is bitter sweet, bitter because I cannot do it, sweet because I had the joy of once being able to do these things and have the memories to fall back on.

    After years of not having a holiday I enjoyed a few days on the Norfolk Broads with my daughter. But at the same time was not able to enjoy the quiet walks she was able to go on. At times I get angry because it always seems these special times together get ruined because of my back pain or breathing problems, but then I remind myself that what is important is giving my time to her, even though she is an adult.

    These days if I stop and look at my body I feel ashamed of myself for letting it go, but keeping my weight between 15 and 16 stone is a struggle, though at one stage it did go up to 19 stone. 

    I guess for me partial acceptance and peace came when I decided not to dwell on what has been, but look to what I have now and make the most of it. Sadly a big part of  that ended this evening (Monday night) as it was our AGM and I stood down as Chair and Board member because I simply don't have the capacity at this time for all it entails. On the bright side, I do have a job and studying towards doing a professional qualification, currently doing the foundation course. I started my journey with no qualifications and now hold several, including two Level 4 qualifications.

    As I said, I still yearn for my old life sometimes, but my disability has allowed me to develop as a person in ways I would probably have never done had I still be able to function the way I used to.

    There is nothing wrong with still pushing yourself, you just need to do it in a different way. Listen to what your body is telling you about itself on a daily basis, accept it has limitations and plan around those. If your back is feeling a lot worse take it easy for the day, on a good day don't push yourself to your physical limits, it will probably impact on the next day. A lot easier said than done and took me a few years to learn how to listen and learned the results of what happens when I ignore it.  I also found it made things easier by giving my life a different focus. 

    In short, there are no easy answers and what has worked for me may not work for you. But I would say giving your mind something different to focus on would be a start in the right direction.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • reeniereenie Member Posts: 23 Courageous
    Thank you so much for your reply. I let out a big breath of air after i read it, in a good way.
    I have 3 son's. My youngest was 5 when it happened. I beat myself up for the things he has missed out on. I am ashamed to admit it but it's the truth, at one point i felt I was more a  burden than a mum and nearly took my own life. Lockdown showed me that I do have some value as I was needed emotionally by all 3 son's, who are now 8, 15 and 20. 
    It amazing the qualifications you have got. I really admire your determination. I'm hoping to continue studying when the youngest is older. For now I pat myself on the back when I manage to cook a healthy meal.
    I use to work 14 hrs a day running my own business and my home. I am grateful I have that memory because maybe one day I can find something I can do and know I succeeded before. 
    Thank you again for your reply. I feel less alone. X
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,307 Disability Gamechanger
    Hi @reenie

    One sentence in your reply shows you have some amazing skill sets and determination. 'I use to work 14 hrs a day running my own business and my home.'

    I would bet that person is still there and struggling to get to the surface of what must seem like drowning.

    When I packed up work because I could no longer cope with the pain it never occurred to me that I would not work again, and never lost faith that it would happen. I had a unique opportunity to do some volunteering that would allow me to develop, and supported by some amazing people to push myself and get out of my comfort zone. I had access to some of the best free training available at the time, covering finance, budgeting, employment law, board skills, funding applications and other topics. As the funding we received covered paid training they were happy for me to do paid courses, including college, Directory for Social Change, ACAS and others. My two qualifications at level 4 are for housing and training, the second one being the minimum qualification for working in a college. 

    Over the years one thing which has stood out for me is the number of disabled people who seem to work tirelessly in voluntary roles who make a huge impact on their local communities alongside able bodied people. Many also volunteer in more than one charity. The other thing many had in common was despite what they were capable of they were considered unemployable by the state and importantly by employers. 

    Again I was fortunate in it only took a few years to sort out why I was in so much pain, by which time surgery was ruled out as any damage was permanent. The best advice I got was from my Osteopath who told me in all likely hood I would always be in pain, it was how I coped with that pain physically and mentally that would make the difference. They managed to get the pain levels down to something that I could cope with mentally and was the start of my journey to accepting the new norm, for me.

    I returned to work seven years ago, and one of the things I brought with me was my passion to learn and determination to make the best of the opportunities it presented. It is not easy, when my pain levels are high I find I get fatigued easily and at the end of the day when my pain is usually at its worse thoughts about is it really worth it creep in. But taking it one day at a time and not worrying too much about what is around the corner has helped a great deal to get through it. 

    Please don't beat yourself up over your children. I screwed up my relationship with my daughter when she was younger. She still remembers the things that happened, but she also knows what I have been through and the efforts I made to mend that relationship. At one point I never thought I would have the great relationship we share now. A large part of that was down to being there when she needed me and supporting her aims in life.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • reeniereenie Member Posts: 23 Courageous
    Yes my brain  has been tormenting me with how I can make money now. When really I need to rest until the doctors have the time for my spine injections which could be forever the way corona is going. 
    Thank you for sharing your experiences  it has really helped me. Sometimes it all just gets too much. The pressure, the responsibility when my body is screaming at me to lie down and not get back up. My spine damage happened in my childhood and I just ignored it for years. Then out the blue one evening my left leg completely stopped moving. My left arm went very weak.My speech went funny, I couldn't hold my head up without it shaking. I had to close my business immediately, give up my allotment , my flock of chickens and ducks. My husband work reduced his hours for 6 months then he had to quit. Doctors were back and forth about what the cause was. Had surgery to remove a large growth in my face and airways. But kept ignoring the childhood spine damage. After 2 years they finally did another Mri of my spine and it showed the damage in my lower spine was worse, was displacing my left main nerve root. It also showed a problem with my thoracic spine where the most intense pain is, after the doctors telling me it was in my head and it was transferred pain from my lower spine. Got the results just before the first lockdown. But treatment is on hold. They offered me a walking frame the other day! 3 years later. I've already bought a better one than they have to offer because I needed to get up and be a mum again at the very least. 
    Trying to focus on raising the boys for the next few years in the hope I will keep what mobilty i have and transfer that to a career. Fingers crossed. Hate not being financially independent.
  • janer1967janer1967 Community champion Posts: 5,144 Disability Gamechanger
    Hi there 

    It is never easy to come to terms with a disability and I struggled myself going from one day having a career, a home, driving being a single mum and very independant

    The next day I had my leg amputated and was in a wheelchair, the hardest thing I had yo do was tell my son 10 at the time who also that year his dad had left us

    I suppose a bit different for me than you as I didnt have a leg to walk on so didnt crave the physical activity. I then had a prosthesis and was learning to walk again when I went bind in one eye and this hugely affected my balance and in time made it impossible for me to use the leg

    Bu now after a few tough years I have adjusted and while I never get over the change this has made to my sons life we have built a good life together I feel he has gained in some ways having to come to terms with it
    I have started several online courses which is helping fill some time

    There are always people who are worse off than you but I know that doesnt help you

    Have you considered counselling or anything similar, I wasnt trying to go on about myself just thought it would help you see this js a journey that may take a while 

    Always here if you want a chat a rant or a moan    
  • reeniereenie Member Posts: 23 Courageous
    Wow. What an intense experience you have had!! Well done for your sheer determination to carry on! You must have felt like screaming 'why me?' a lot! 
    If I didn't have the need to be a mum I don't think this would have attacked my mental health so much. You feel like your child is missing out on so much don't you? I can't help compare what I could do with my elder two sons to what I can do with my youngest. I do have help from my local mental health team. They helped me feel ok when my consultants were making me feel insane. My psychiatrist wrote in her report that my physical restrictions are the cause of my mental health crash. I will be waving that under my consultants nose if I get to see her again that is! 
    I appreciate you sharing your story. It helps me feel less alone and less ashamed that I hate on myself for my physical restrictions. I do think about the people who have it a lot worse than me and think 'God they would **** slap me for feeling this way' but that can also then make me feel more guilt for feeling depressed. 
    I didn't know physical cravings for exercise was a real thing until it happened to me. It was intense for the first year. I would see people out running and want to knock them over so they can't run! But now I can look at them with mild jealousy ha ha. 
    Thank you again for sharing with me xx
  • csno01csno01 Member Posts: 134 Pioneering
    reenie said:
    Before my spine gave up on me I used running to help control my mental health. 3 years later and I still physically crave going for a run. I can't even walk more than a few metres before my spine refuses to cooperate and my legs go to jelly. But my brain , my damn brain , can not accept this. I keep trying to beat my disability but instead end up in a worse state physically and mentally.
    When does acceptance happen? When does that internal desperate plea for my old life disappear? 
    Hi @reenie

    My name is Chris and I am a member of the Scope online community. I read your story / post regarding your spine, 
    I am so Sorry to hear of your experience. I hope you are ok. 

    I have read your post and although my story is slightly different, I can definitely relate. 

    I have been visually impaired since birth and didnt really get to understand my condition until I was about 18 years old. I asked my Consultant and he gave me the names of my symptoms / conditions. When I read upon them, I was heartbroken and refused to accept it, until I was around the age of 25. During this time I realised I wasnt doing myself any favours. 
    After doing some research and talking to the right people, I then realised that with the right support, I could start to see things in a more positive sense.  My achievements and how far I have come.etc. 
    I am now feeling more happy and comfortable then before. Although, I still have my moments. So does everyone else.  

  • reeniereenie Member Posts: 23 Courageous
    Thank you for sharing. Thanks to all the comments they are helping me focus on not beating myself up for the things I can't do anymore.
    Hugs to you all x
  • Tori_ScopeTori_Scope Administrator Posts: 2,086 Pioneering
    Hi @reenie! How are you getting on today? 
    Online Community Coordinator, she/her

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • reeniereenie Member Posts: 23 Courageous
    Hi. I'm doing better thank you. Been making myself go out on my mobility scooter a bit more to my local shop , only when needed at the moment, but nice to not ask the hubby for everything. The anxiety over feeling like a slow moving target for muggers is holding me back the most which I'm trying to ignore because I have always been feisty lol. 
    Thanks to the supporting replies on here I'm slowly focus on improving what I can do for myself and finding the right aids and supports. Instead of thinking about what I can't do as a mum. 😁
  • Tori_ScopeTori_Scope Administrator Posts: 2,086 Pioneering
    It's good that you've been getting out and about a bit @reenie as I know that can be difficult, especially at the moment! 

    Have there been lots of muggings where you are recently? Is that why you're worried?

    That's great to hear :) You're spot on there, it's about finding the right support so that you can become more independent. 
    Online Community Coordinator, she/her

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  • reeniereenie Member Posts: 23 Courageous
    I have ptsd from a traumatic long length of time  in my youth so i already had anxiety about being outaide alone but built up my physical fitness so i knew at least i could leg it lol. Can't do that now and yes there have been a lot more reports of violent muggings in my area for the past year. More desperate people I think with unemployment so high. 
  • Tori_ScopeTori_Scope Administrator Posts: 2,086 Pioneering
    I see @reenie. It sounds like you've been managing to get yourself out more despite this, so that's really great! A few feisty words would do the trick I'm sure :D 
    Online Community Coordinator, she/her

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • janer1967janer1967 Community champion Posts: 5,144 Disability Gamechanger
    Glad you are getting out more do you take a phone with you when you go out, maybe use some earphones and talk to your husband while going about that will put people off seeing you as a target , or just pretend you are talking to someone that way you can have the earphones in but heat anyone approaching you also your scooter is a protection as you could run over someone with it 
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