amireallythatcomplex

[amireallythatcomplex]

A lot of leftist accounts are posting about not buying PSLs from Starbucks due to their support for corporate greed and genocide in Gaza. They suggest buying from local coffee shops instead.

However, as I have to keep doing literally every time something goes round about anti capitalist action by using local cafes and bars, I must remind people that *if* they are accessible enough for me to physically get into them, then I absolutely will.

However, if you see a disabled person using a large chain, the odds are it’s because every other place that sold whatever it is they need they physically cannot get into, and, if they can, they certainly cannot pee in them, and not because they support genocide or corporate greed.

Disabled folk may in fact be *forced* to use such places if they need to be out and about because nowhere else has a disabled bathroom to use, including for changing a stoma bag or pad, or because they *need* to eat or drink to take essential medication and there is nowhere else they can physically get in to do so.

If you are an abled person who genuinely believes in accessible, inclusive public spaces, please a) consider this fact when choosing where to hold events, and b) put pressure on inaccessible independent bars and cafes you love to increase their accessibility. Offer to contribute to a crowdfunding campaign, or indeed to run one, if they say that costs prevents them becoming more accessible.

Disabled people are part of every local community on the planet and measures that “support your local community” while excluding us from participation in it do not, in fact, do so. They just increase the exclusion of marginalised people from local communities. Abled people have more energy and money to tackle this fact than we do.

[amireallythatcomplex]

(Left) 15.08.24 marked 1 year since my Cauda Equina Syndrome diagnosis, ft my Cauda Equina Spinal Cord Injury beanie 💚

(Right) 16.08.24 marked 1 year since my L5/S1 decompression and discectomy at QMC in Nottingham

Küschall K-Series 2.0 chair and Ossenberg comfort grip crutches. Ambulatory wheelchair users exist! I'm #ambuplegic In other words, I'm an ambulatory partial paraplegic because of the nerve damage to my bladder, bowel and legs - I have patchy feeling in parts of my legs/feet and reduced motor function and balance, plus lots of nerve pain. The crutches are for use around the house and short distances walking; the chair is for longer distances or where walking would be dangerous e.g. I used my chair in Lidl on my diagnosis anniversary (despite it taking longer to get it in/out of my hand controlled adapted #Peugeot308 because it was raining badly and the floor was way too slippy for crutches despite me only wanting 3 things - it would've been painful and slower to walk around the shop even if the floor had been dry).

[amireallythatcomplex]

One year post L5/S1 discectomy because of Cauda Equina Syndrome (16.08.23) montage.

[amireallythatcomplex]

Yesterday marked one year post Cauda Equina Syndrome diagnosis, and I had lots of cuddles from my Frenchie puppy because she knew I was upset. Then I went swimming (did my physio exercises, some walking and a tiny bit of "swimming") and walked around part of Decathlon with my mum and nieces. In the afternoon I drove (driving using hand controls rather than my legs feels so natural now) to my friend's and we went to Nando's and had a great time (and I showed off my new CESCI beanie). Then I did my first solo shop at Lidl in my wheelchair (and got soaked getting it in and out of my car).

I was stared at by lots of people whilst using my wheelchair, but I'm proud to use it. Being ambuplegic isn't bad, so why should I care if people comment on me moving my legs or getting out of my chair and taking it apart to put it in my car? Yes, I can walk, but it hurts, and sometimes isn't safe (like yesterday when it was raining badly and Lidl's floors were very slippy and I could've fallen if I'd gone in there on my crutches).

Now I'm in a fair bit of pain and pretty tired after such a busy day (for me, I did 1,342 steps and 1,501 pushes, smashing both my targets). Another positive is that I've been out of the house for the first time in months without wearing incontinence pads and not worried about having an accident because my bladder is getting stronger using the flipflow valve on the catheter, and the Peristeen bowel irrigation is working.

Now just to get through all the emotions today (and the coming week) is going to throw at me since it's the anniversary of my L5/S1 decompression (the surgeon said they were only able to remove about 80% of the compression off my spinal cord) and discectomy. And the potential PTSD caused by my stay on D8 at QMC Nottingham, especially after they nearly killed me with a latex catheter despite knowing about my latex allergy!

[amireallythatcomplex]

how ablebodied people look at me after telling me they’d violently kill themselves if they had my disability

[amireallythatcomplex]

Shoutout to paralyzed people. Those with complete paralysis, incomplete paralysis; Those whose paralysis was caused from accidents, brain injuries, strokes, spinal cord injuries, neurological illnesses; Those with paraplegia, quadriplegia, hemiplegia, tetraplegia. Who were born paralyzed or became paralyzed later in life.

Those who have a carer, those who use a wheelchair full-time, those who use crutches or canes and those whose mobility aid is a hospital bed. Those with incontinence, who wear adult diapers, ostomy bags and catheters. You are not "lesser" for needing care or not being able to live independently. You deserve to live a comfortable life with autonomy and dignity.

We rock. We're fucking amazing. I love you.

[amireallythatcomplex]

happy disability pride to all of my fucked up spine havers

happy disability pride to those of us who have spinal cord injuries, degenerative disc disease, ankylosing spondylitis, scoliosis, kyphosis, lordosis, spinal arthritis, cauda equina syndrome, tethered cord syndrome, spinal fusions, stenosis, myelopathy, radiculopathy, spondylolithesis, craniocervical instability, spina bifida, spinal tumors, syringomyelia, and anything else spine related

we are so very cool and i love you all so much

[amireallythatcomplex]

In 5 days, it'll be one year since I collapsed and face planted a bex after my entire lower body cramped up at the same time, making me unable to move my legs and causing pain way off the 1-10 scale. I called in sick for work and went to the QMC A&E in Nottingham. I spent around 15 hours in a wheelchair in paid despite being given strong pain relief. I was then transferred up to the Neuro-Spinal Assessment Unit on 15th August and had an MRI that showed a herniated L5/S1 disc, and I was diagnosed with Cauda Equina Syndrome, something I'd heard of but I didn't know exactly what it was. I was told I'd be having emergency surgery as soon as a theatre slot became available and the spinal surgeons were able to operate - I was given two choices 1) have emergency surgery that could paralyse me completely/remove the pain and I had a very good chance of a full recovery, or 2) stay in excruciating pain until the disc completely severed my spinal cord and completely paralysed me. Obviously, I wanted to get better and get rid of the pain, so I opted for surgery.

I had an L5/S1 discectomy (they removed part of the disc to relieve pressure on the spinal cord) on 16th August 2023. The surgeons said they were able to remove about 80% of the disc that was putting pressure on my spinal cord, so there's still some residual nerve compression to the nerves that go into my left leg. I was told that the disc was severely calcified, meaning it had been herniated a long time before it took my legs from under me - looking back I've potentially had symptoms for years, but I didn't know they were red flags for CES. Afterwards, I found out that the surgery is offered to preserve nerve function and not cure the symptoms, so now I have an incomplete spinal cord injury.

A year on, I still have weakness in my legs, although they're a bit stronger than just after surgery; however, because of the weakness and nerve pain in my legs, and also back pain, I can only walk short distances, which is why I also use a wheelchair for longer distances, or if my pain is too bad. It's why I describe myself as ambuplegic since I'm partially paralysed and an ambulatory wheelchair user. Currently, I'm waiting for the pain management team to trial nerve root block injections for my left leg (although recently, my right leg has been more painful). I'm on a lot of strong painkillers too, but 90% of the time I'm still in pain, which is why pain management are going to be exploring options with me to help reduce the pain.

Do I wish I'd had the surgery now? In a way, no. That might sound bizarre because without the surgery, I'd now have a complete SCI and would be completely paralysed from the waist down. However, it would mean I'd have no nerve pain in my legs! My bladder (I currently have a urethral catheter because intermittent self catheterising wasn't working well, and I'm waiting for a suprapubic catheter to be fitted) and bowel (I take lots of laxatives and have just started bowel irrigation treatment) also don't work properly due to nerve damage, so not having the surgery wouldn't have made much difference to them.