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We want to hear from you: please tell us about your experience of the online community.

Hi, my username is AnKa and I am new to Scope

AnKa

Hi,
I am an autistic woman in my 50s. I have actually identified as disabled for decades, but I have never before joined a disability community. I have had this funny sort of imposter-syndrome relation to it, because my disabilities hasn’t been all that visible. (I am also moderately hearing impaired). Now, dyspraxia, and the resulting early onset osteoarthritis, has become so bad that it heavily affects my ability to walk. This in turn triggers my executive dysfunction, which makes it very difficult making my body move even if I want to. I get disorientated and loose my ability to navigate. I do realise that I need help. Walking has been my way of caring for my mental health and for keeping my heart strong (I have a very rare heart and lung condition as well). Hikes in the mountains have been my way of holiday-ing, and I have been proud of being a ‘mountain goat’. It has been part of my identity really. Now that I cannot even manage my daily walks any longer I feel totally lost.

I am lucky having a husband who is also my daily life carer, doing the things that I might find hard due to executive dysfunction and sensory overload. But I really do miss the ability to walk with him on his walks. He is very fit and walks 10-20 miles every day. Walking together has been a good way for us to communicate, as he cannot sit still for very long.

I have gotten the advice to apply for the mobility part of the PIP, so that I can afford to rent a mobility scooter. Then I will be able to get out and about and to follow my husband on some of his walks. But I am dead scared of applying. I am very good at saying that ‘everything is fine’ even if I really struggle. I am not sure that I will be able to tell them how things really are, and I am very, very scared of being misunderstood and misinterpreted, as that sadly is part of my daily life as an autistic, and adds to the difficulties of dealing with most officials including the health and social system. I dread this process so much! Still, I have to do something, because this situation is detrimental to my mental health, and I do not know how much longer I can cope
with not being able to get out into the free spaces of nature.

I hope that by joining this community I can get advice on how to live with the restrictions my disabilities entails. I am really in need of a community where I can discuss what to do next - how can I find activities that can replace the ones I used to enjoy before my ability to walk deteriorated this much. How and where can I meet people in a similar situation who would understand and where one can share
advice on ‘now what’. What are the possibilities for someone in my situation?

I am normally a positive person who seeks out possibilities. But now I feel stuck, confused and lonely. I am working part time from home as a writer, but I find it more and more difficult to concentrate on my work, which obviously has a quite negative effect on my income.

What I am really hoping for is a disability community for adults not too far from where I am living (County Durham) with meet-ups and social events. I don’t yet know if that exists. But I also love the thought of being able to connect to other disabled people other places in the UK. The internet is a great place for such connections.

Thank you so much for giving me space to express myself!

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Comments

poppy123456

Hi and welcome,

As a community we don’t arrange “meet-ups” in person. You’re welcome to chat in the lounge and to join in on any of the discussions.
With your PIP claim. There’s 2 parts to PIP, daily living and mobility. Once you’ve applied and receive the form you need to fill all of it in, rather than just the mobility part. Whether you would qualify for any award will depend on how your conditions affect you against the PIP descriptors. When filling out the forms you should put a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Use extra sheets of paper because there’s never enough of room on the form to add all the details. Make sur you put your name and NI number on everything you send.
To be eligible for the mobility scooter you need to be claiming Enhanced mobility. This can be quite expensive, in the meantime have you looked at buying one yourself? This is usually a lot cheaper.

There’s huge backlogs for PIP claims at the moment and the estimated waiting time from DWP is about 10 months form the time you claim until you receive your decision, so it’s definitely not a quick process.

Once you receive the forms If you need more advice then post back here and I’m sure someone will help you further.

AnKa

Thank you so much for your answer and for your explanation around PIP. I understand I’ll better get going and apply sooner rather than later.

Do you know if it is possible to buy a scooter and pay in instalments? I cannot afford to pay it all at once. I have no idea of where to go to buy a scooter, but I am now referred to a OT, so maybe they will be able to advice me on that.

Thank you!

poppy123456

You maybe able to get finance for the scooter but this will depend on your financial circumstances and of course be subject to credit checks. here's a website i found for scooters. There's more available if you google it. https://www.millercare.co.uk/mobility-scooters/

Have you had a look on gumtree or facebook in your local area there's usually people selling mobility scooters quite cheap but it will depend what exactly you're looking for.

AnKa

Thank you!

Ross_Alumni

Hello @AnKa

Welcome to the community, it's lovely to meet you and thanks for introducing yourself.

Have you had any conversations with your GP or an OT about your mobility? It must be quite difficult to go from doing things like long walks to then feeling as though you can't go on them anymore with your husband, but with most things there are often ways in which you can adapt the process to fit your needs, for example by using a mobility aid of some kind as you suggest there with the scooter.

It's about taking little steps forward and working out ways of getting back to doing the things you enjoy, because becoming disabled shouldn't mean that you can no longer do those things.

You touched on your mental health there, and said that you feel lost, confused and loney - I'm sorry to hear that. It's good that you have such a supportive and loving husband, but do you receive any support to manage your mental health from your GP? Have you ever spoken with them about how you feel?

To find local events and groups, I generally find it useful to contact the local council to see if they have a directory of some kind, but of course you're always welcome on this community even though we don't hold localised meet ups at the minute.

chiarieds

Hi @AnKa - & welcome to this friendly & supportive community. I'm sorry things have worsened for you especially with your mobility. It is important, as it seems you know, to carry on exercising. You might like to have a look at the following link, & scroll down to 'Exercise': https://forum.scope.org.uk/discussion/75929/coping-with-stress-low-mood-and-isolation-a-support-thread/p1#

Another link for mobility scooters available with finance options: https://www.discount-mobility.co.uk/mobility-scooters-c77689.html

As far as PIP goes here's a link to the activities/descriptors that are looked at:

https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf

Filling in a PIP claim for with mental health problems: https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/how-to-fill-in-the-pip-form/

I hope some of this may be helpful too.

AnKa

Thank you so much you lovely people. I will use some time checking out the links I’ve been given. This gives me a sense of being able to do something myself. For me that is really important. I feel privileged for getting the care I need, but I need to be able to participate as well not just being cared for. It is something about the need to feel useful and valuable.

Luckily I know I still have the strength to get on. Nevertheless, belonging to community where one can feel understood, because people can relate to one’s experiences, and at the same time being able have fun and laugh together is so important.

I will talk to the GP about my mental health, and eventually an OT. (I was referred 2 years ago, but never heard back, probably due to the pandemic and me avoiding the health- and social system and therefore not pushing. I am now referred again). I do see that my mental struggles are highly due to feeling isolated because of the lacking ability to get out and about, and that giving me the ability to be wheeling in stead of walking will give me back my grip on my mental health. That is absolutely a valid point in the struggle to get the assistance and accommodation I now need without having to wait for too long. Therefore I realise it is something I need to talk about even to health and social professionals.

Thank you for making me feel so welcome here, and for letting me speak about these issues. I can see more clearly now what I need to do. That is very empowering!

AnKa

Just a little update:
I have now ordered a mobility scooter. There were some good financing options suitable for me. I am so thrilled and looking forward to meeting this autumn with an ability to go outdoors. Thank you ever so much!

chiarieds

What a good, positive update @AnKa - yes, you can now move forward; what a really great first step.