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Hi, my name is Barkingmad15!

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Barkingmad15
Barkingmad15 Community member Posts: 18 Connected
Hi all,

Although new here, I have been suffering spinal problems on & off since 2010. I had surgery in 2011 on my cervical spine & in 2014 on my lumbar spine. I had flare ups & issues at odd times but around 18 months ago things took a turn for the worse. I was being considered for a device to interupt pain signals in my spine from St Thomas' Hospital until I was told I may also be suffering Fibromyalgia. I am no longer on the list with St Thomas' & have been back & forth between my doctor & other local specialist services. I had a phone call today from a senior physio with results from my latest MRI which is showing that below the surgery site C5/C6 through C7/8 (I think) the nerves are showing aggravation & inflamation which causes pain all through my shoulders & dwon both arms. I also have a constant tingling in my hands & fingers & in my feet. Additionally I have a large disc protrusion at T1/2. & also further issues in my lumbar spine which is showing nerve inflamation. None of this can be fixed by surgery or would be operated on further unless it became life threatening or risk of paralysis. Sorry if this is long winded intro but not really sure how I could explain it in simpler detail. I think the call today for me confirmed I don't have a great future out there work wise. I am currently on UC & the lower rate of PIP mobility. I was hoping at some point to get back to work, as I loved being 'out there' as it were. My main profession is driving. I hold HGV & PSV class 1 licences & up until I had to stop working was driving a small van all over Europe delivering urgent aircraft spares, which I loved doing. i cannot see given the news today & that my condition is degenerative, I will be able to return to professional driving. I am 49 years old & very lucky to have two very supportive parents & a brother who let me live with them. This does of course make me feel more than alittle useless though. My disabilities are also largely invisible & cause extreme fatigue. It is so dificult to explain to those who do not understand. I am really wondering if anyone out there is in a similiar situation? How they are coping? I am well aware there are people in much, much worse condtions & how they cope day to day is just amazing. Looking for people to say hi to & interested to learn others techniques for getting around etc. Thanks for reading.

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 52,743 Disability Gamechanger
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    Hi @Barkingmad15 welcome to forum  thatns for telling us about yourself. I do u derstand your situation a little, as I have spine related problems as do alot of other users on this site. You may need to discuss your results with your dr or Consultant to make a plan going faward. 
    In the mean time talk to others on here through the conversations, coffee shop under categories is a good start.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello and welcome @Barkingmad15 it's great to have you join the community today :) 

    Thanks for sharing what's been happening lately, it's really helpful to understand how you're feeling. As Sandy has said, a lot of our members also live with chronic back pain and fatigue, so please don't hesitate to reach out- a good place to explore might be our chronic pain and pain management category.

    Naturally you're proud of the job you've been doing, I can tell that you're passionate about it, so it's understandable that you're feeling unsettled at the changes in store. It can be a difficult thing to go through, but please know that the community is here to support you. 

    I'm not sure if it may be possible, but if you feel your conditions have worsened over time you might like to tell the DWP about a change of circumstances, which could enable you to receive the enhanced rate of PIP for mobility.

    Getting the enhanced rate would in turn would entitle you to lease an adapted vehicle, which would give you the freedom to drive again, if that was something you would like to do. 

    Do you have any other interests or hobbies that you might like to pursue now, that you've never had the chance to?

    Let me know if I've missed anything, or if I can help further, and please do enjoy having a look around- the coffee lounge is a good place to chat to other members.

    Alex
    Online Community Coordinator
    Scope

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  • Barkingmad15
    Barkingmad15 Community member Posts: 18 Connected
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    Thank-you for the comments. I have battled through the UC/PIP which took the best part of a year. I may at some stage be able to get a mobility vehicle I suppose but then have to fight them again. I used a lot of good advice from Benefits & Work which were a fantastic help. I am unsure what your policies are about posting links so for now if anyone wants the details of that website just PM me. I was very proud of the work I did & really hoped I may have a few more years in me. I have known ever since 2011 that my condition is degenerative , I was just hoping for a little longer before the major problems start. I am very grateful to the Neurological centre that used to be at The Royal Alexandra Hospital in Haywards Heath (now at Royal Sussex, Brighton) They literally saved my life as I would otherwise have been paralyzed from the neck down! Even though our NHS may be slow & cumbersome I wholeheartedly support them wherever possible. I am looking forward to chatting with you on the other forums. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    You are welcome for our comments @Barkingmad15. It is the very least you deserve.

    I hear that you have struggled with the UC/PIP process, especially as it took the best part of a year. It sounds like you are curious about the possibility of getting a mobility vehicle but are put off by having to fight the UC/PIP process again. What might help you to access a mobility vehicle and navigate UC/PIP?

    It is really positive that you have found the advice from Benefits & Work to be a good and fantastic help. How would you feel able to reaccess their support if you decide to get a mobility vehicle? Generally, we share links but not anything inappropriate or that may be commercial (trying to sell or promote something).

    How are you doing with your health at the moment? It sounds challenging to know your condition is degenerative but not know when the major problems start. Hopefully, you will have long before the major problems start. Really positive to hear you found the health care team helpful.

    Please don’t hesitate to let us know if we can do anything to support you further or if you have any questions we might be able to answer :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Barkingmad15
    Barkingmad15 Community member Posts: 18 Connected
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    @L-Volunteer Many thanks for your comments. Yes, I found the whole system to be really stressful & I got a positive outcome, if of course you can call being on support for prob the rest of my days positive! I am probably teetering on the edge of being able to qualify for the higher rate of PIP at the moment, hence why I don't want to give them any excuse right now. I suspect that by the time it's re-assesment time I may then qualify, so happy to leave it til then. I found the people at Benefits & Work fantastic & their guides really helped me, so much so that I renewed my subscription, even though I technically don't need it at the moment so I could support the site. 

    Hopefully I can find some friendly people on here to chat too. Honestly, I have never been very socially minded often working as self employed & been a bit of a loner but maybe it wold be nice to make some casual friends :) 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,505 Disability Gamechanger
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    The coffee lounge is a great place to visit if you'd like to chat to friendly, like-minded people about more casual topics @Barkingmad15 :)  
    National Campaigns Officer, she/her

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