TL;DR/ in summary- I am disabled with chronic illnesses and unable to work & so am trying to raise funds towards the incredibly inaccessibly expensive costs of specialised mobility aids. These consist of power trike attachment, the 'Berkelbike Easylegs connect with electric pedal support', with various necessary modifications for my manual wheelchair, as well as to cover the costs of my 'Byacre Carbon Overland off road rollator' (all terrain wheeled walking frame). These expenses in all amount to £12,000.
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Due to my health & mobility impacting me so much, with a rapid decline since developing long Covid in 2022, it's become necessary that I create this crowd funder. This is to help improve my chances of raising the funds required for the mobility aids that will most benefit me & give me back more option to get around with more ease & autonomy.
The conditions which most impact my physical health are; POTS, ME/CFS, Long Covid, heart issues including Mitral valve prolapse, endometriosis, adenomyosis & degenerative disc disease in my cervical spine - full details around all these are too complicated to go into but if needed, can be googled.
I experience chronic fatigue, chronic pain, hypermobility with weakness & joint instability.
POTS stands for Postural Orthostatic Tachycardia Syndrome - Amongst the complexities of multiple symptoms this means I have trouble standing for long periods of time where I experience dizziness, breathlessness, visual disturbances & can become very faint. It causes an increased heart rate especially upon standing - which on continuing to move around can become much higher than what should be 'standard' for the minimal activity I'm doing, despite the medication I'm on.
And so in summary I cannot move in the same way an able-bodied person can.
Like many others with complex chronic health issues/dynamic disabilities, I can physically manage different things at differing times - some days are not as bad, but many days I can't get out of bed & can also experience symptoms quite unexpectedly, very suddenly. This means I require options of different aids at different times accordingly - I rely on my walking stick & rollator, but often find these are not enough - I still cannot get around as much as I'd like, I need to stop a lot & when I try to 'keep going' can be on the verge of tears with walking becoming painful & too challenging with my multitude of symptoms triggered.
To better my independence and improve my quality of life, I need a wheelchair with power, so I can use it without relying on others to push me. A wheelchair with power attachment would allow me to conserve energy, experience more joy, move around safely, and manage my symptoms more effectively, especially on days when my pain is flaring up or my other symptoms are acting up.
Due to the deconditioning I've experienced (typical of those with hypermobility & POTS) with my health having declined so rapidly, I would personally most benefit from a power attachment that offers me some gentle movement for my legs as & when I can manage. Maintaining movement in the legs is also known to help manage the severity of POTS & help circulation, benefiting heart health & reducing pain. 1 thing I have missed incredibly the past few years is the joy & freedom I used to feel getting out on my bike & this attachment could give me that back. It would also be able to aid me in better getting my dog out & joining others outdoors, which has become very minimal in my life.
The power attachment I have found that meets this particular specification is a 1 of a kind electric trike attachment with power assist pedaling and is called 'Berkelbike EasyLegs Connect' . It would mean that I would be able to engage with manageable exercise by pedalling with different levelled options of powered support, including fully automatic for when my legs just need to rest. As I would be sat fully supported, I would be much less likely to aggravate my POTS symptoms. These can be set off by standing, moving around & over exertion & makes me very unwell when exacerbated.
I've tested out the power trike attachment on the cycle path in Warmley & my smile was coming out the sides of my face with how lovely it was to be able to 'cycle' again taking deep breaths with the air stroking past me - *pics attached.
To be able to feel like I can move at some pace, without my heart absolutely racing or being breathless, was incredible. The attachment requires various fittings & adaptations to connect to my wheelchair & I would also need to get all terrain wheels for my chair to accompany it.
I have already been given a manual wheelchair by the NHS, which has a headrest which is particularly helpful for my problematic neck. But I am unable to self propel this due to my health conditions. As an ambulatory wheelchair user (only need some of the time), the NHS cannot provide power chairs due to strict restrictions in funding - these can only be issued to full time users. So like many others with similar health conditions, I have to cover the costs for a power attachment myself & am turning to crowdfunding & support of fundraising from charities/organisations.
I was also issued a basic rollator (like a zimmer frame with wheels) through social care, to support me walking - but I found it was really poor quality and it couldn't manage any uneven surface outside. Which is unfortunately really not suitable to my unstable joints, weakness or chronic pain. So I instead invested in a really great lightweight, all terrain rollator, the 'ByAcre Carbon Overland off road' that glides over surfaces & has offered me so much joy even getting to roll it over piles of autumn leaves. I now need to cover the costs for this by adding this to my fundraising requests, as I need to be able to maintain the many other expenses for my health needs.
My other expenses include; various therapeutic approaches and hopes to save to eventually drive - to fully benefit in my autonomy & freedom to get around further, enriching my life & visiting nature & loved ones. Obviously if I am successful in raising the funds I will also need to pay for insurance & maintenance of the attachment.
I have nowhwere near the funds to cover this, because it is EXPENSIVE being disabled, I can't work because I'm not well enough, I come from a very poor background & power attachments/quality mobility aids are pricy, hence my asking you all for help. I appreciate everyone is also really impacted financially, but even if you can give ANYTHING as little as say £1, please do, you may feel it's not a significant enough amount to give but it is at it can add up, so I will appreciate every penny!!!
*DISCLAIMER: I can still walk - but I have a dynamic disability, (to repeat above) so some days I may get around trying my best to do things, but others it is a struggle to move beyond my bed. Currently my rollator provides me the most physical support, but the specialised power trike attachment would save me from increased fatigue & symptom exacerbation.
Some that know me, may be aware I have previously used crowdfunding to support the cost of therapies, which proved unbelievably helpful.
Unfortunately this has also contributed in being quite a barrier to me putting this crowdfunder out sooner, due to fears of being met with possible misplaced judgement. The reality is that trying to manage living with complex conditions is expensive and accumulating costs are challenging to meet as a chronically ill disabled person unable to work, with decent mobility aids being well beyond my means.
I hope that people will understand life is unpredictable & these struggles are very real & sharing this offers the possibility of massively benefiting from the power of community & solidarity.
If you have any questions about me, my conditions, or anything else, please reach out to me :)
I am also approaching charities/organisations to help with this as the expense is so high.
Even if you can’t donate, sharing this fundraiser to help gain more support, would be just as helpful and sincerely appreciated ♥️
