Hi! I'm Beth.

Image: Me wrestling a shark - it didn't go well as you can see.

I have ME (Myalgic Encephalomyelitis), a complex neuroimmune disorder which causes debilitating fatigue (among many other symptoms), and means that the majority of the time I can't walk more than 15-20 meters without feeling very unwell (the shark image isn't real, in case you couldn't tell).

I am lucky enough to be (just) able to work four mornings per week, supporting students in a college. 

I enjoy being a useful member of society. However, the exertion of walking around at work means that I am stuck on the sofa, unable to leave the house for the remainder of the time.


Images: The sofa where I live (can you tell how much I love it!?)

Because of this I cannot do things that most people take for granted like going to the bank, post-office or local shop. It is common for me to go 6 months or more without seeing a friend, and for several months without seeing my family.

Image: I would like to meet a friend for coffee

I usually go for even longer without being able to do any of the things that I love, like going out in nature or to arts, music or science events.

Image: I would love to go to an exhibition

I need a wheelchair so that I can get around campus at work without making myself too ill, and also to be able to do things like post a letter, meet a friend, and get out to do something enjoyable once in a while.

The NHS can only provide me with a heavy-duty manual wheelchair, which is impossible for me to use because I would not be able to self-propel it, or get it in and out of my house or the taxi to work. Because of this I have been given an NHS personal wheelchair budget of £150 instead, towards the cost of a suitable wheelchair.

However, the equipment that I need costs £9660 in total.

This is because I need an ultra-lightweight, compact wheelchair that I can lift in and out of my house, and get in and out of the taxi to work. The chair that meets my needs is the Kuschall K-Series, which costs £2793.

Image: Kuschall K-Series

Because I cannot self-propel, I need an easily detachable power pack that is not too heavy or bulky for me to lift in and out of the taxi and assemble myself. This is the Max Mobility Smart Drive MX2+, which costs £4795.

Image: Max Mobility Smart Drive MX2+

While the Smart Drive is perfect for navigating the long corridors at work, it is less suitable for longer distances or uneven surfaces (such as wonky city streets or footpaths).

For this I need something that will lift the front castors up (so they don't get stuck and catapult me out!) and that is safer by having easier control over steering and breaking. This is the Rio Firefly electric hand-cycle attachment:

Video: The Firefly in action

I love photographing tiny things in nature. Here are some pictures of a snail and a woodlouse that I took in my back yard:



Having a firefly would enable me not only to get out and about in the city, but also to go out in nature to enjoy and photograph a much wider range of natural phenomena (and also to be less pale!). The Firefly costs £2045.

Because I am only just well enough to work four mornings per week, during term-time only, I do not have disposable income and it would take me years to save up this much money.

Any help to raise the money needed would be hugely appreciated.

Being able to go to work without making myself too ill for the rest of the day, and being able to get out now and then to see a friend or to do something nice, would make an enormous difference to my quality of life.

Image: Dreaming of all the places I could go

In sum:

Raising £7588 will enable me to purchase the wheelchair and smart drive power pack so that I can get around at work without making myself so unwell every day.

Raising an additional £2045 will enable me to purchase a Firefly, so that I can go out in nature and also on longer journeys or less even ground.

This will enable me to see friends, go to exhibitions, get to the shop, bank, etc. and pursue my interests in biology, environmental science and photography.

I have therefore set my target at £9660 minus the £150 NHS contribution and the £140 that I have already raised = £9370.

In the event that I raise more funds than needed, I will donate the remainder to the Open Medicine Foundation - an international biomedical research organisation that is working hard to find effective treatments and eventually a cure for ME. There are millions of people living with ME worldwide including many children, so this is a very valuable cause.

Thank you very much for your help. Please make a donation if you can, and whether you can donate or not, please help by sharing on Facebook, Twitter, Instagram etc.

Wishing you all the very best!

Beth

Click here if you would like to know more about ME: 
https://www.omf.ngo/what-is-mecfs/