Help Lauren get hats to local charities for a wheelchair!

Hello everyone!

I am disabled, have Hyper-mobile type Ehlers-Danlos Syndrome (EDS), also known as Joint Hyper-mobility Syndrome. EDS is a multi systemic condition effecting the quality of connective tissue my body produces. (Connective tissue is around 45% of our bodies mass.) This means that I have unstable joints, fragile tissues throughout my body and I injure very easily. I also have a nerve sheath tumour called a Perineurioma in my left hand, and I have Endometriosis and Adenomyosis.

Due to the EDS, I have SI joint dysfunction (The joint that connects your pelvis to your tailbone), a herniated disc at L5/S1 and bulging disc at C5/C6. I also have issues with stability of my spine in my neck. I have dislocations/subluxations daily causing pain and weakness in my limbs. This all causes issues with being able to stand up and walk and even to use my mobility aids like a stick. Due to the disc at my lower back, when I worsen the injury, I lose function and feeling in my lower half and often am admitted to the hospital for observation to see if they need to operate or if they can wait until it worsens to that point. All of these issues cause issues with my walking and I can walk but not very far or pain-free. Due to the Endometriosis/Adenomyosis, I have adhesion's in my pelvic cavity, a few of my organs are scarred together causing pain and dysfunction of my bodily functions. This causes fainting spells occasionally. Due to suspected co-morbid conditions to the EDS, I have issues with my heart rate, and I have fainting spells when going between laying down or sitting and standing. Due to the tumour in my hand I have muscle atrophy, nerve damage, and am slowly losing function in my thumb and index finger. Due to where the tumour is, they cannot operate to remove it without me losing most of the function in my left hand entirely, I am just on pain management until the tumor grows enough to cut of circulation etc. The tumour is inoperable until then, and the outlook of function after then is bleak.

Since I had to give up working in 2016 due to my pain and function issues I took up a lot of hobbies, I tried knitting , arm knitting, loom knitting, crochet, painting by numbers, cross stitching, embroidery. (Too hard to keep any of these hobbies up due to function issues and pain.) Over the years, I've collected a LOT of yarn, but have now reached a point where I cannot do most of these hobbies without being in considerable pain, stabbing myself with needles due to the loss of sensation in my left hand, and causing fatigue. I've decided I need a way to get rid of all of my yarn before I have to stop these hobbies entirely.

Since 2016, my pain, muscle weakness, fatigue and function have all gotten considerably worse. I've been using a few different mobility aids, and using mobility scooters where I can. I walk mainly with a cane but have to use my attendant managed wheelchair that I had supplied by my GP in 2019. The issue with this chair, is that it is quite tough for my carer/fiance to push as he has an injury to his wrist that now has a metal plate fitted, and when going out for extended periods of time it can cause him a lot of pain pushing me, leaving myself unable to get around.

Many people felt isolated in their homes, disconnected from the world and desperate for connection in 2020 during the pandemic, but my life is always like that. Most days I am house-bound and bed bound around a third of the week, every week, more-so if I've had a flare up of pain or have injured myself with a bad dislocation or had a fall etc... I have missed so many family events, my nieces and nephews growing up, I go months without seeing family. My life didn't change when the pandemic happened, and this passed winter and spring, I was even prescribed supplements from the GP due to being deficient in Vitamin D, C and in Iron. This was due to being stuck in the house all year and only going out a handful of times. This year so far has been bad, I've only been out in the sun 2 or 3 days this summer and I am hoping that next summer will be different.

I would like to be able to go out on walks with my fiance and friends, go to Glasgow, or Edinburgh for events or even just out shopping. I'm only 29 and I live in bed or on the couch. I have found a solution for that but because I can walk for very short periods around the house, I do not qualify for an NHS voucher towards a power wheelchair. I have to fund the purchase of a folding power chair myself.

I'd also like to help others out at the same time as getting rid of my yarn collection, and fundraising money for a chair.

For every £2 donated to this crowdfunding cause, I will make a hat for our local clothing banks and other causes. I can use a knitting machine which has a crank I can use with a hand drill, this means that I can physically manage to make around 2 or 3 hats a day in the mean time.

I believe that by starting this now, I can manage to make over 1000 hats for this coming winter to help those who need it. If I can manage this next year physically, I hope to do it again and the donations can help fund the materials or can go to the local food banks.

Having to admit at 29 that I need a wheelchair to live my life has been a battle the past 5 years, but struggling with the chair I've got has brought me to a point where I have to swallow my pride, ignore the embarrassment, and own my abilities as a disabled person in 2024. I am who I am and I feel like helping others whilst trying to help myself is the best thing I can do with the situation I've found myself in.

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(Wheelchair Details)

I am looking to save up for the Glebe Mobility GE200R. It is a folding wheelchair that I would be able to fit into the boot of my mobility car without getting a winch installed. It has reclining features which would mean I could go from laying to relieve pressure on my SI joints and tailbone. It also comes with a headrest which would support my neck during episodes of instability there, without having to find somewhere in public to lay down which I often have to do if I do manage to get out. It also has a heated back rest for pain relief which is very helpful as I do often try to use heat as pain relief without going for my heavy medications first. It is also reasonably priced comparing it to other folding chairs out there which can go up to £5000+. I am also getting a chair over a mobility scooter as it would be safer and more comfortable to control than having to use both arms to steer the scooter.

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If you have any suggestions in regards to where I can donate these hats to locally then please feel free to comment below and I'll be sure to add them to my list.

Thank you for taking the time to read my page,

Lauren Haggerty.