Hi! Welcome to the party!
These are the rambling of a 30-something disabled woman trying to find a new direction in life after all my plans went out of the window due to disability. I suffer from Fibromyalgia, Degenerative Disc Disease, and hEDS (Hypermobility), which is just a magical combination, reducing my mobility and causing me chronic pain. I also have mental health issues.
I don’t want this blog to be a sad place as if you couldn’t tell from the title, and I’m determined to live my life to the full, mobility issues be damned!
I live in North Yorkshire, England, with my husband (G) and my baby daughter (Abby), my cat Elphie, my Border Terrier Tilly, and 3 snakes. Until a few years I was a manager in the Pub industry, now I do design work and marketing for the pub company I have worked for since 2011 and am doing a Graphic Design degree
My interests are gaming, movies, reading, crafting, and archery. I used to enjoy caving and rambling, but they aren’t something I can really do anymore. Nothing wrong with my upper body though. I’m a massive geek, and love Star Wars, Star Trek, Game of Thrones, Marvel movies and sci-fi and fantasy in general. I also enjoy a good horror movie. I read comics a lot, my current favourites are Lumberjanes, Saga, and Rat Queens, and read a lot of fantasy novels.
I love tattoos and have 16 so far, but the number will grow!
I’m mildly obsessed with Irregular Choice shoes, even if I can’t wear most of them!
I am also interested in all things Gothic and Steampunk and try and attend Whitby Gothic Weekend as often as I can.
I am a feminist, and support LGBT+ rights, and whilst I enjoy good spirited debate, I will not tolerate bullying or shaming of any kind. Live and Let Live.
Around February 2017, things went Wrong. Life didn’t just give me lemons, it planted the bloody tree in my garden. Or so it seemed at the time.
I was diagnosed with Fibromyalgia and eHDS in 2013, around the time I started having back problems as well. I’d been working in pubs for a while and was in the process of working my way up the ladder (I started off as a housekeeper in 2011 and worked my way up). At first, my only symptoms were burning pains across my skin on my shoulders, and tiredness, which I was able to cope with. With the back problems, sure, I had to be careful lifting and carrying things, but I found ways around things like that. And so my career progressed, going from Duty Manager to Assistant Manager, to General Manager. I was on the way up, and eventually, I wanted my own pub. I still had a few aches and pains, but nothing major, and I was coping. Life was good.
The in February 2017, out of the blue one day I was suddenly struck down with horrendous pain in my left hip and leg. After a trip to A&E, it became clear that there was nothing obviously wrong with my left hip, so I was sent home with strong painkillers and told to rest. Nothing seemed to help, and the pain got worse and seriously interfered with my job. So in April that year, I made the decision to stand down as GM of the pub I was running, and do Marketing for the company instead.
After many visits to a Musculoskeletal specialist, a few MRI scans, and a nerve conduction test, it was determined that I have Degenerative Disc Disease in my lower spine, which is trapping nerves, causing sciatica type pain. The Fibromyalgia makes the pain worse, and it’s now at the point that I can only walk short distances aided by a walking stick, and even that exhausts me. On my best days, I’m in moderate pain, on my worst the pain is severe, but I also get numb patches up and down my leg and foot. Ever walked on a numb foot? It’s not easy!
In December 2017 I was told by a specialist that there was no treatment for my Fibromyalgia, other than pain management. I was 37 years old and felt like I was 90. At the staff Christmas party, I danced to three songs (with my walking stick) and ended up in bed for two days in agony. My husband and I also moved into a new house, and I found the hard way I couldn’t help him do the move. I felt awful.
I’d been carrying on the best I could, but in January 2018 I had a breakdown and ended up needing emergency mental health care. I was at rock bottom, and I didn’t see a way back up. My health had degenerated so fast, my entire life was thrown into chaos. I didn’t see I had a future. I was suicidal. Luckily a combination of intensive therapy and a change in medication, I have come out of the other side and couldn’t be happier. I’ve accepted my limitations, and am finding ways around them. I’m doing a Graphic Design degree and hope to become a freelance designer in time.
Shortly after my breakdown, after seeking medical advice first, G and I decided to try to start a family. Amazingly, it only took 3 months to conceive, and after a hard (but worth it) pregnancy, my daughter was born in February 2019.
This blog is a way for me to write about my journey from here on. It can only go up from now on!