Hello (again?) World!
Hello World!
Who am I, and what am I doing here, you may ask?
So, a couple of years ago, after being a disabled worker and student for quite a while, decisions were taken out of my hands and I was (finally) medically retired. In my 40s and a lifelong employee in at least one job at a time, a mother, and also a lifelong student, artist and creative, this was a real shock to the system, but realistically it was hardly even a decision anymore.
I had been aware I had a rare blood disorder for years, but had been asymptomatic and treatment free since childhood, until having children, when I struggled with recurrent miscarriage. I never fully recovered from the impact of childbirth, which unfortunately allows my particular disorder to flare up. Initially, I had a series of operations, and seemed to improve, even be fine for around 8 years, but had phases where my balance would vanish; I fell down the escalator at a shopping mall, my hands would not work properly, and I began to experience numbness and loss of feeling that declined for years. This was treated with Stemetil as a kind of recurrent labyrinthitis, but in reality was probably the decade long onset of Chronic Hemiplegic Migraine, a predisposal to migraines known to be exacerbated by the blood disorder. I was eventually diagnosed after an episode resembling a stroke while driving. I swerved into a car park and rang a family member but then lost the ability to walk and talk; this was my first full paralytic event, and I remained in the Stroke Unit 5 days during recovery and diagnosis of the migraines.
Despite new awareness of my decline and the additional problem of the Chronic Hemiplegic Migraines, things had started to become more and more difficult anyway as time went on. If I sat down, I would fall asleep in my chair at a PC by 3pm unless I got up again, moved around, and slapped my own face. I am now undertaking testing for Narcolepsy, and can no longer drive. I would forget the words to my sentences while teaching. I would begin stammering mid-sentence when I realised I had lost the thread or meaning of the conversation I was involved in; then find my conversational partner filling my words in for me. As a trained teacher with a subject specialism in Communication Key Skills to Level 5, I cannot describe what a painful development this was for me. I was often late; unbeknownst to anyone around me, I was getting lost on the way to work because I often forgot where I was going, arriving at old family addresses and then wondering why I was there, checking my phone and diary to try and work out where I was supposed to be. Driving or travelling at all was exhausting, so I began making excuses not to leave the house, or see people. Making conversation brought on a migraine. Severe tinnitus impaired my sleep, and I realised I could not hear my children properly anymore; I was losing my hearing. I fainted over and over again walking, even to the local shop, eventually, a stranger found me passed out in front of our local pharmacy and called an ambulance. The same thing happened again a fortnight later. A&E referred me for long term help, and multiple diagnoses. I began growing fibroids and benign lumps both internally and externally, and needed another series of emergency operations to remove them. Eventually, a small skin cancer lesion was cryogenically burned from my face in 2024, bringing my surgical interventions to a total of 12, and I am on the waiting list for another internal fibroid removal, probably in 2025.
What did I do then, when I retired in my 40s? Mostly, I sat on the sofa and stared at a wall, without really realising I was doing that, or slept, for most of two years. Sometimes I ran rampant and raged ceaselessly, then passed out and slept again. Occasionally (okay four times) I had to complete an anger management programme. I was present and invested for my children and family members, when always before I had been running out the door on my way to work. I was cutting back absolutely everything that cost money in order for us to survive. I was helping care for elderly family members, and my mum, who was diagnosed with a rare and brutal cancer, not long after my sister recovered, with massive life changes needed, from a brutal cancer. I supported one of our children through an Autism diagnosis and work towards university, while helping another of our children with the process of neurodivergence assessment. While both necessary and fulfilling, honestly some of the impact of this was yet more hours wall staring. For better or worse though, I think the energy I have is going to the people I really need it to, for this moment in time.
While working and learning, I had also been an urban sketcher, a gamer, and lots of things I could have named myself. Suddenly I didn’t feel there was much left of me, not at least that other people’s labels stuck to. Art still feels miles away, I’m still struggling to create. I suspect I’m too angry at life. Books though, I can still do, especially audiobooks, as reading text is very exhausting now and not manageable with migraines. All that work as a librarian has to be for something right? I joined an online book club, and have found it a great way to gently interact with others. The time dedication is limited, and so I can manage around exhaustion. I also naturally have absorbed a lot of information. When I can handle the time input, I also solo RPG; my solo adventures are available on the link on my blog page. Finally I made my past projects available to the student community; this has always been the case on my academic links, but these dissolved with my retirement. These resources are still resources though, made for use, so should still be accessible. I hope they are some use.
