How do you come to terms with having a disability? — Scope | Disability forum
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How do you come to terms with having a disability?

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positivemama
positivemama Community member Posts: 26 Courageous
edited November 2019 in Disability rights and campaigning
Morning all,

 I hope the morn has brought happiness and ease to you all. 

I'm struggling with my ME, it's stealing my mobility rapidly since September. I've had it 5 years and now it's stopping me from having a social life, walking to the supermarket without hitting crash mode.  :'(
Am a lone parent of a school aged child and the school walk 400m one way is leaving me panting for breath and exhausted. I don't have family in the country to help me.
Does anyone have any advice about how to come to terms with being disabled ? 
Most greatful for the support. Sorry this isn't a very positive post.

Thank you in advance


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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Hi @positivemama and a very warm welcome to the community, it sounds like things have been really tough for you at the moment. Coming to terms with a diagnosis can be so difficult, especially if it continues to change, it sounds like you are doing great.

    I'd recommend a needs assessment which you can refer yourself online. This could help with equipment or social care. If you need anymore information then please do let me know. :)

    Also, are you currently claiming any benefits?
    Scope

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  • positivemama
    positivemama Community member Posts: 26 Courageous
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    Greetings Chloe
    Thank you for your warm welcome. 

    Am going through the frustration of it at and the emotions. I've pushed myself from last year, volunteering but had to give it up because the walk to get there and back was burning my legs out. I put my.child into the school closest to home walking distance and that is becoming painful. No social life except the odd coffee once a month with a fellow friend with ME. I don't drive so I have to do grocery shopping walking which leaves in me in pain and need my feet up high for a few hrs or completely lay flat in bed. I can't take pain medication because am soo sensitive to it. A paracetamol knocks me out for 5 hrs in a deep sleep. I have my child to look after so medication is a no. 

    Am currently in receipt of UC since 7 months and filling the uc50 form in these last few days. 

    Thanks for the assessment link, I'll look into it. 
    Best regards 
    Positive Mama 
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hello positive mama,

    first off let me say how meaningful your username is...it shows you do have the mindset and wish to cope with your disability.
    and that`s gotta be good!

    Yes, it is really hard to accept and deal with living with a disability. And having a young child emphasises it all the more. You want to enjoy your little one`s tender years and do all the things you see other mums doing. that`s natural.

    So being an `old hand` at this game, how can I help you? Been disabled 20 years and in a wheelchair for most of that time.

    I`m 67 now, so a grandma too. I`m sorry to hear you have no family in this country to help you. 

    But there are things which I hope will help you.
    This problem with your mobility.....is it a temporary thing, or aren't you sure? I ask because if it is progressive, then perhaps you could think about getting a scooter. I know money will be tight, but maybe the ME support group offer grants for such as this. I had one for 13 years, before needing to change to a wheelchair.

    The SCOPE admin may know of other grants to enable you to get a scooter. This would help you with the school run.

    You could also attend coffee mornings or do your shopping with a scooter to get you there and back. They are easy to drive and I would recommend a 4 wheeler, rather than a 3 wheeler.

    Have you tried to claim PIP? This would also give you the funds to buy a scooter.

    Are you having a care assessment? I am in the middle of another...I`ve had to request more help as my needs worsen too.

    Always remember, you are a very important person...never let anyone tell you or make you feel any less.

    Take care.
    Pollyxx
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  • positivemama
    positivemama Community member Posts: 26 Courageous
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    Polly,

    Bless you darling. I read your msg and tears are filling my eyes as I write back to you. 

    Thank you for your kindness, I really appreciate it. 

    Am sorry to hear that you have spent 20 years in a wheelchair. You sound like a strong woman to say the least. 

    With regards to my mobility I think it's getting worse. I've discussed it with the OT who I have a monthly call with and he doesn't seem concerned, I guess because able bodied people don't have the issue it's not an issue. I think it's progressive because it's got worse despite cutting out soo much. 

    I want to get a mobility scooter but it's the financial side of things that prevents me. I did enquire at the local mobility shop and the cheapest the gentleman has was £1000. Told him I'd have to go save big pennies before I could come back. He seemed a bit confused because I walked in despite being in pain, that was back at Easter time. 

    Am just now going through the uc50 questionnaire and I'm on universal credits for the last 7 months thankfully. 

    Blessings to your loved ones. It must be a joy to have Grandkids. My parents remind me then can always hand grandkids back lol...waiting for the day they have mine for the first time ?

    Thank you so much for replying. You are a gem xx
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Hi @positivemama, I really hope you'll be able to get more support through the needs assessment, it sounds like things are really taking their toll. Please do let us know how you get on and if there is anything else we can do to help. :)
    Scope

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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    positivemama said:
    Polly,

    Bless you darling. I read your msg and tears are filling my eyes as I write back to you. 

    Thank you for your kindness, I really appreciate it. 

    Am sorry to hear that you have spent 20 years in a wheelchair. You sound like a strong woman to say the least. 

    With regards to my mobility I think it's getting worse. I've discussed it with the OT who I have a monthly call with and he doesn't seem concerned, I guess because able bodied people don't have the issue it's not an issue. I think it's progressive because it's got worse despite cutting out soo much. 

    I want to get a mobility scooter but it's the financial side of things that prevents me. I did enquire at the local mobility shop and the cheapest the gentleman has was £1000. Told him I'd have to go save big pennies before I could come back. He seemed a bit confused because I walked in despite being in pain, that was back at Easter time. 

    Am just now going through the uc50 questionnaire and I'm on universal credits for the last 7 months thankfully. 

    Blessings to your loved ones. It must be a joy to have Grandkids. My parents remind me then can always hand grandkids back lol...waiting for the day they have mine for the first time ?

    Thank you so much for replying. You are a gem xx

    Hi again, whoever told you the cost of a scooter is £1,ooo is having a laugh at your expense. Don't ever think of buying a scooter from him!!!!!

    I paid almost £2,000 for mine BUT that was way back in 2000. Things have become much cheaper since then!


    The scooter I had was brilliant and they still make the exact same model and it now costs around £800 NEW. You can buy used ones for a much less too. Look on ebay. I`m gonna have a look and will get back to you.
    I hate the way us disabled folk are often ripped off!
    Back later.xxx
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  • deb74
    deb74 Community member Posts: 814 Pioneering
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    My mom paid £600 for her scooter. It is definatley worth looking around!
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  • ayomide76
    ayomide76 Community member Posts: 8 Listener
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    coming to terms with a disability can be very hard
     I became disabled in 2012. I also spent 6 months in my bed without being able to even go to the bathroom. It can be so hard to deal with! I finally accepted my life to be more challenging. I fought to get help especially as I was a single parent. I lost count of the nights I spent in Tears!  I got a second hand scooter for £200 and a second hand elec wheelchair for £150. If you can check charity shops local or ask someone to check for you. All the best x
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  • positivemama
    positivemama Community member Posts: 26 Courageous
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    Being a single parent alone is hard but being disabled too is a whole new strength finding task. Bless you. I will ask around. Thank you for sharing your story. 
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  • Rooprs
    Rooprs Community member Posts: 12 Connected
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    I agree with everyone about the cost of scooters, and the basic, pavement/ boot scooters are far cheaper than a grand!

    I did get a second-hand one initially but be careful as i had a lot of problems with mine and eventually had to scrap it. Here's a Which guide to doing that, which hopefully helps: 
    https://www.which.co.uk/reviews/mobility-scooters/article/how-to-buy-the-best-mobility-scooter/buying-a-second-hand-mobility-scooter

    As far as coming to terms with being disabled, it's impossible to predict how long that might take; I'm still struggling with that years on! Get support from friends and services, and don't be afraid to share with those you trust. 
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  • brianb
    brianb Community member Posts: 4 Connected
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    I find talking helps me and I have studied Acceptance Commitment Therapy ACT. It has helped me to accept my situation and then helped me to commit to valued action to make the most of my life. Yes I struggle and there are times that my MS can be over powering, but I am committed to looking my MS in the face and laughing at it. I am commited to doing whatever I can to keep going.
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    brianb said:
    I find talking helps me and I have studied Acceptance Commitment Therapy ACT. It has helped me to accept my situation and then helped me to commit to valued action to make the most of my life. Yes I struggle and there are times that my MS can be over powering, but I am committed to looking my MS in the face and laughing at it. I am commited to doing whatever I can to keep going.

    Hi Brianb, I`ve had my disability for 22 years. It presented as typical PPMS and progressed rapidly. I lost control of my bladder and bowel and mobility. None of my 4 MRIs, 2 LPs, 2 EMGs and a VEP plus bloods never proved anything. So I was diagnosed with no proof for 8 years. But I`d had these symptoms for 5 prior years too.


    In 2011 MS was discounted in favour of Hereditary Spastic Paraplegia. A few years later, when genetic testing was done, HSP was out of the picture.


    But just last month Dec 2019 I went into a specialist neuroscience hospital and Spinal MS was firmly diagnosed with significant demylination on my cervical spine was clearly seen on a MRI.

    Some journey eh?


    Nice to meet a fellow MSer. x
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