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MrsKWaddMrsKWadd Member Posts: 2 Listener
Hello, my name in Kayleigh.
Was doing some research into finding a good, reasonably priced rollator for walking round woodland areas. Anyway, scope came up on something and I thought, why not sign up.  A bit about me.  I've multiple disabilities. I've gone from being active and walking miles, to the walk around Aldi being too much. I meed to walk more to help keep myself free from a wheelchair for as long as I can. Sadly eat disability I have sort of throws a spanner in for whatever the other needs. I dont like to admit I struggle and need help. My husband and I are very strained at the moment wkth all he does to help. I dont want to talk to my friends because I feel embarrassed.  They will say "its 11am and ive gutted the whole house and washed all the floors" ill nod along and say yes me too. When in reality I've have to spent 20mins going upstairs to the loo then another 35 getting dressed. I feel like I'm a failure and letting my kids down.  I guess I was hoping to talk to others, maybe that can help with how I feel. X 

Replies

  • Tori_ScopeTori_Scope Posts: 4,010

    Scope community team

    Hello and welcome to the community @MrsKWadd :)

    You've definitely come to the right place, as many of our members have, unfortunately, experienced similar feelings. I just wanted to say that you're absolutely not a failure, or letting your kids down in any way.

    Would you mind sharing a bit more about your conditions, as this may help other members with similar experiences to find your post?

    And did you manage to find a good rollator?
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  • janer1967janer1967 Member Posts: 9,102 Disability Gamechanger
    Hi and welcome on board your feelings are very familiar to how many disabled people feel you are not alone 

    You are not letting anybody down including your children they will become more understanding and aware of what other people have to deal with and this will give them strength and empathy 

    We are always here to chat feel free to join in 
  • chiariedschiarieds Member Posts: 7,907 Disability Gamechanger
    Hello @MrsKWadd -  & welcome to this great community, Kayleigh. I'm sorry about the difficulties you're now experiencing, but it's great to read your determination to keep mobile. I don't know if you've come across the following company, but you might wish to look at their rollators, or seek their advice. Please see: https://www.completecareshop.co.uk/mobility-aids/heavy-duty-rollators/    but also look around their site as to the other rollators they have with differing prices.
    I'm sorry you feel embarrassed to explain to your friends; if you don't let them in, then you're not giving them the chance to understand. It could happen that you might lose some friends, but you will find who your true friends are. You haven't mentioned what your diagnoses are, but from what you've said, the following sounds like it might be applicable to explain to your friends as to how these impact on you daily. It's called 'The Spoons Theory.' See: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
    You're certainly no failure; rather you're doing the best that you can......certainly a great achievement! :)
  • MrsKWaddMrsKWadd Member Posts: 2 Listener
    @Tori_Scope
    Hello, ofcourse not. So, I was born with CMT1X its a Hereditary disease and I also have the PMP22 duplication along side that. I wasn't diagnosed until I was 22. My mother was only diagnosed several years before as was my younger sibling.  I was always active,  but for the past several years its effected my mobility. 
    Just over 2 yrs ago I was diagnosed with Thyroid cancer, the cancer and Thyroid was removed and this has left side effects of, I believe hyperthyroidism.  
    At the same time u was also diagnosed with Crohns disease. Recently j qas diagnosed with something called CFS and also Bile acid malabsorption.  
    I've also had mental health problems since being a young teen which is due to not producing enough serotonin.  Theres a few other other bits and bobs like asthma and dyspraxia. But its the mobility and the pain , followed by the fatigue that is the worst. 
    Ideally I would like a rollator that would allow me to go through wooded areas, so I can go out with my kids like I did when they were babies. Saw the trionic site, theyre amazing but nearly £1000! So hopfulky there may be something similar but cheaper out there. 
    @janer1967 thankyou for your reply aswell and your words xxx
    @chiarieds thankyou for your reply and I shall have a look at that site. I've also messaged my two good friends and am planning on telling them when we can next meet, lock down ending hopefully,  about how much I am struggling. Its a long list of diagnosis I know, theres so manybthat those with lesser effects I always forget about so there will be something missed off the list. 

    Many thanks all of you for taking the time to reply. Much appreciated  xxx
  • Richard_ScopeRichard_Scope Posts: 2,724

    Scope community team

    Hi @MrsKWadd
    It's good to meet you.

    Unfortunately most if not all equipment design for disabled people is horrendously overpriced. I call this the 'disability premium' and it ranges from cutlery to wheelchairs to travel insurance etc.
    All-terrain Rollators range from £700 to £1200. Have you thought about hiring one as and when you need it?
    Scope
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  • Cher_ScopeCher_Scope Posts: 3,319

    Scope community team

    Hi there @MrsKWadd and thank you for filling us in on your various health conditions.  It sounds like you have a lot on your plate and I'm not surprised some days feel like a struggle.  Just to emphasise what others have said - to cope with all that and have a young family makes you superwoman in my eyes.

    I did a bit of searching and we have another member who has CMT1 however they posted a while back, so our Physical impairments and mobility issues discussion board could be a better place to find others with similar mobility problems.  

    As an aside - if you ever want a chinwag about your Crohn's please let me know because I have that too :)  (I hope your stomach's behaving for you).  

    I understand how expensive assistive equipment can be and wanted to suggest looking at Scope's information page about 'Paying for disability equipment and assistive technology'. This includes info about additional support you could be entitled to, so try to give it a look.

    I hope you have a good Tuesday and speak soon!  
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  • chiariedschiarieds Member Posts: 7,907 Disability Gamechanger
    Hi again @MrsKWadd - Thank you for saying about your medical issues. I don't know if this is any help, but the site I mentioned has Trionic Rollators (with 9 inch wheels) £660; (with 12 inch wheels) £710; (with 14 inch wheels) from £750 with VAT exemption which you can easily claim with a simple form on their website, & free P & P. See:

  • Ross_ScopeRoss_Scope Posts: 3,105

    Scope community team

    Hello and welcome to the community @MrsKWadd

    I hope you're well. Just wanted to say that you are absolutely not a failure, but I understand that those emotions can often take over sometimes, it can be hard to ignore them.

    You've joined the right place, this is a very supportive community, where you can also have good fun :) 
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