Getting an Electric Wheelchair

Hello

My name is Chloe (now Langton) as I married in April this year to my best friend. I am 26 years old.

I have been ill now for more than several years now, going on 9 years with numerous chronic illnesses; Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Hypermobility & chronic pain with a whole host of symptoms ranging from muscle weakness, dizziness, flu like pain all over the body, headaches and migraines, cognitive problems, digestive problems, extreme debilitating fatigue, allergy symptoms.

Here are some charity websites that explain what the conditions are.

The main diagnosed condition I struggle with is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/CFS.

https://www.actionforme.org.uk/what-is-me/introduction/

http://www.fmauk.org/what-is-fm-highlights-203

There are times when I have better periods of health, usually not passing more than a few weeks or a month of me pushing myself in attempt to overcome my conditions by sheer will having been told for so many years that the conditions were all in my mind and not real. This is something that I have struggled with and it has effected my mental health. I also struggle with post traumatic stress disorder, depression and anxiety for the larger part triggered by my health conditions and there have been particularly low times in my life where I have felt suicidal and self harmed as a way to cope. I have however learnt to find more healthy ways to cope such as counselling, reaching out for support, keeping close to friends and family and finding strength and resilience in my Christian faith and therein in myself too.

My health conditions began when I was 16/17 with a viral like illness & pernicious anaemia. I went back and forth to doctors for months, being told it was all in my mind, I took medication, was signed off work, rested but as time went on I did not recover infact I became more ill eventually becoming unable to work.

As the years went on, I eventually got diagnosed with the conditions I have which helped in part in accepting and understanding what was happening to me but it did not take away the trauma and grief that comes with learning you have chronic life long conditions for which there are no cures or medical treatment. I was to learn that my conditions are self managed and not treatable as of yet.

In my time of being unwell I have had times where I have had carers looking after me in my home, been bed bound and been reliant on crutches or wheelchairs. I have been reliant on my now husband to care for me and support me in all ways imaginable. I have also had times of more independence. All throughout I waver between acceptance and denial. When accepting I embrace my limitations, am honest with myself and those around me, I do what I can and I surrender the rest, I use a wheelchair or aids without shame and I feel help. In denial, I refuse to accept my health conditions as anything more than a challenge for my mind to conquer, I refuse to talk about it than more than in the past tense, I refuse to use aids or the wheelchair due to embarrassment and shame and I push myself physically until I live on adrenaline and coffee until I crash experiencing severe relapses. My hope is to live more in a balanced place of acceptance.

My friends are my family but I do not have a traditional large family as often others do, which has made support limited.

This includes financial support. Not being able to work has restricted me from getting the appliances and health aids that could help me improve or at least manage the conditions I have.

I have a normal wheelchair which my husband and occasionally friends have been willing to push me in but being a very independent person with fears for my husband's long term health I have always fought to resist the chair unless I really really need it.

Everyone's conditions vary and invisible illnesses like mine are just as real as any other disability or health condition. I have always said that my illness is not in lack of limbs or lack of ability to use them, it is lack of energy on a cellular level too complex and miniscule to be seen the eye but very very real in my body. For me, using a wheelchair is about pacing and self preservation. It helps me to see it as a matter of energy or battery life, like on my mobile phone... If I constantly allow my phone to run on zero battery, it will begin to overheat and eventually break down but if I work within the battery limit, plugging it in before it switches itself off... The battery life will be manage better and last longer. Managing my conditions is about pacing the energy I use in a day, which is so difficult when my energy levels are so low even on a good day. The repercussions of too much energy used at once can lead to a serious decline in my conditions, flare ups, remission and more serious bouts of illness that can last week's or months or even years.

Having an electric wheelchair for me, would mean freedom. Freedom to go out without relying on someone else or their health suffering. Freedom to just be myself without striving or pushing through the pain and discomfort and fatigue to fear the aftermath to come. Freedom to discover who I could be and what I could accomplish if it were not constantly about living on 20% battery when I could live life on 40%. Freedom to give my body chance to replenish itself while I rest the parts that need resting. Freedom to use my physical energy prioritising, physiotherapy for example to strengthen my muscles, while protecting my remaining energy and strength. For me, living my life in bed everyday until I get another 5% energy is not something I can do, without suffering severely in my mental health. I need to be able to go out by myself, be in nature, see friends, consider volunteering options... And I believe that an electric wheelchair could help me do this.


These conditions can be confusing. I will always be honest and transparent about what I can do and what I can not.

The bottom line is, I can walk. I wouldn't want to be seen outside my house, on my two legs and accused of being a liar as society so often does... My legs work. My health and energy levels do not function properly. My energy has to be protected, reserved and used carefully in order to pace and manage my health conditions, with the hope of managing, at best improving my health as it is today.

I have never been someone to ask for help especially of a financial nature and I'd be lying if I said this does not make me feel somewhat uncomfortable, it does but truth be told, my health is more important than my pride and so is freedom. I would never beg or urge anyone to donate but I humbly ask, even the smallest donation would mean the world. 

Most electric wheelchairs for long term use and longer distances, including accessories such as a neck rest, reclining back, storage bag etc, waterproof covers tend to be between the £1000 - £3000 mark.

Thank you so much for taking time to read my story. I will include a photo of the type I would be looking to get.

Love Chloe