Well, where to start this one…? As I have for the last few years, I wanted to write a little post telling the story, highs and lows, of this year. But unlike I predicted in my last year’s post, 2020 hasn’t been the year anyone expected. The main reason for this, of course, is the global corona virus pandemic that has turned everyone’s world upside down and inside out, basically altering normality for the whole country and world. It’s halted everyone’s plans and made the year a much bleaker one than anyone previously thought. So this post is probably going to be very different to all my previous new year’s posts, mainly because I don’t really have a lot to write.
Firstly, this time last year I was waiting on the confirmation of a start date for the apprenticeship I’d been accepted for at our local hospital. Similar to many things this year, that never came. Sometime in January, just as I’d put in a claim for Access To Work funding for travel and equipment support, I got notification from the hospital that my assistive screen reader software wasn’t compatible with their NHS systems I’d need to use to complete the majority of tasks for the job; and there was nothing they could do to rectify this. So the job was off. Many apologies were given but there was nothing anyone could do about it. For quite sometime, I was very bitter about the outcome. For the first time, I’d actually been chosen for a job. Someone, somewhere, thought my lousy computer skills and patchy attitude were good enough for the role they’d advertised, better than all the other applicants who’d gone for the position. I’d been so elated. I couldn’t believe it. I was going to be employed. I wasn’t going to be another disability unemployment statistic. I’d spent months and months wondering what I’d do after I finished my degree and now I had something concrete, something that was going to last at least 18 months and maybe even to permanent employment. But yet again my disability had gotten in the way. My need for assistive technology to complete a job fully sighted people could do easier and probably a lot quicker than me, even with the assistance, meant that I was no longer eligible. So the search I thought was over began again.
I’m still working with my city council employment support adviser. Again, like everything else this year that’s been put on hold, or at least disrupted by the pandemic. In late march, when the spread of the virus had become much more than the country could cope with and the infection rate and death toll was rising dramatically, the government decided to announce a national lockdown, meaning we could only leave our homes for necessities like food and medical support. Households weren’t allowed to mix, meaning for months we couldn’t see friends and family, let alone people like my employment advisor and the lovely My Guide volunteer Jenny who has supported me so much in my efforts to get a Guide Dog. So everything was put on hold. My employment advisor’s support became remote and Jenny’s assistance stopped altogether. We were told as soon as lockdown was lifted, everything would resume as normal. But nothing about this year has been normal. My employment advisor took a great amount of leave away from the job for personal reasons so for a large majority of the year I haven’t been receiving employment support, remote or otherwise. Plus, since early March, Jenny and I haven’t been able to resume our route practice because guidelines haven’t relaxed enough for us to be allowed to work together again. One positive out of this is that Jenny and I have kept in touch well, phoning each other every couple of weeks or so to catch up on each other’s news and generally have a chat.
Of course, this has also meant that my planned visits to see Kieran have been cancelled this year too. Luckily, we were still able to spend time together in January for our anniversary and his birthday as arranged. But since then, we haven’t seen each other at all. It’s weird not meeting up every few months. Due to the long distance aspect of our relationship, it’s never been your standard affair of spending almost 24/7 together like your average couple. But we never expected this gap in seeing each other when we took the plunge 5 years ago. Strangely, these last 9 months have been the longest we’ve gone without seeing each other since we met, let alone since being a couple. We’ve kept up our FaceTime ritual, although not speaking as often as I’d have liked. But we’ve both got our separate lives. He’s up there working hard as always and ive been down here reading audiobooks, watching rubbish daytime telly and basically wasting my days away until this virus is all over. It was odd, too, spending my birthday without Kieran. It’s the first time since we’ve been together that he’s not been here for it. But as always, he spoilt me with lovely gifts and messages. But that doesn’t match up to having him here. Maybe, next year can be different. Currently, it isn’t looking like that’s likely, but I have to keep hoping. It’s been a long time already and I’d rather it wasn’t too much longer.
The pandemic has meant missing opportunities to see my good pal Josh, too. We often met up, sometimes on a weekly basis, to wander around town, browsing the shops and having lunch out before coming back to mine and lounging around for a while. I miss the social interaction that allowed us to have. Josh and I have also kept in touch via text message and FaceTime. When the restrictions were lifted a fraction during the summer, on a day I knew he was working, I got Dad to quickly take me into say a little hello. Also, last week I popped over to Josh’s flat to deliver a little hamper to brighten up his Christmas. It was lovely to see him both times and I look forward to resuming our meet-ups, hopefully sometime next year.
One of the biggest things that’s happened for me this year is my new diagnosis. For a few years now, I’d been having strange feelings. It felt like I was going to be sick and a dejavu like feeling. To start with, I was only having these feelings once a week or so. However, over time the frequency and intensity of the feeling increased to the point where sometimes I felt really shaken or, if it happened at the dinner table, I was actually nearly sick. After contacting my GP about this, we were referred to the neurology department at our local hospital and I went in to answer all sorts of questions about the strange feelings I was getting. Then, things got a lot worse. I started to have full on seizures, usually in my sleep causing me to wet the bed and worry Kieran who was usually on FaceTime when it happened. Next, I had an MRI scan which confirmed some abnormalities in my brain. The humorous part of me would say we knew my brain wasn’t normal already… but the neuro team were taking it more seriously than me. After studying the scan results some more and viewing a video Mum had managed to take showing me having a seizure, they diagnosed me with focal epilepsy. It was a weird moment to be honest. I didn’t really know what to think or feel. An epilepsy diagnosis seemed nothing compared to the things going on in other people’s families at the moment. But it was there, not going away and requiring medication to get it under control before I was able to do myself any real harm. I was put on a low dosage of seizure preventing medication almost straight away. But the dosage was gradually increased as it didn’t seem to be making any difference to begin with. Then, in August, I woke up on a Sunday afternoon in a hospital bed. Touch wood, I’ve always been a healthy person, rarely needing hospital treatment. Except for the operations I had on my eyes when I was little and the X-Rays I had when I broke my wrist in 2012, I don’t remember any other trips to the hospital for myself. But here I was, led in a bed with stuff coming out of my arms and no memory whatsoever of how I’d somehow ended up there. Mum was sat next to me and, once I’d fully come round and stopped muttering gibberish, she filled me in on what had happened. I’d had a seizure whilst laying on my bed. Tamsin and Mum had heard the Big Bang as I’d hit the floor and come running. When I didn’t come round quickly as I usually do, in panic Mum called for an ambulance. Apparently, I’d wet myself again so once the paramedics had done all the necessary checks, they helped Mum change me into dry clothes before rushing me on a stretcher into the ambulance and off to hospital with Mum sitting worried by my side and after Dad had driven speedily down to collect Tamsin. It’s strange, I’ve always wondered what it’d be like to travel in an ambulance at speed with the lights flashing and sirens blaring and the time I got to experience it I was totally out of it. Thankfully, I didn’t have to stay in hospital longer than the evening. When I was discharged, Mum took me down to get a pity Costa and out to Dad and Tamsin who were waiting in the car. Tamsin filled all the gaps in the story that Mum had missed. It wasn’t a pleasant picture, more for them than me really. I just felt tired. They’d done the worrying. Dad was feeling guilty; he has epilepsy and was thinking it was his fault. Tamsin was scared. Mum was just plain worried I think.
The seizures continued for a month after that. My medication dosage was finally starting to work, though, and since the 15th of September I haven’t had a single episode, big or little. Of course, I had to make the last episode ive had a big one. I was showering with Tamsin in the room and everything was normal. The next thing I know, I’m laying disoriented on the floor of the bathroom and hallway with Mum and Tamsin crowded worriedly around me. I’d had a seizure in the shower and fallen right over the side of the bath. How on earth I managed to miss the sink or wall or radiator or door I’ll never know. But I had a blossoming bruise on my left leg where it’d hit the rim of the bath as I went over. That’s still vaguely ther now on the side of my shinbone, only to touch though. After that, the neuro nurse who mainly deals with my case said I have to be supervised when showering at all times and baths are forbidden. Being supervised in the shower wasn’t a particularly pleasant thought but I was more bothered about not being allowed baths. Ive always loved baths, especially if I’ve got a lush bath bomb to chuck in and make everything smell wonderful. But my lush bath time is over. I miss it, but I’ve got used to just showering now and can use other lush products to ensure I still get my fix. Since that day in September, though, my condition seems to be 100% stable. No seizures, no funny feelings. The medication has stayed at the same dosage level for a couple of months and the neuro team seem happy for that to continue as long as I’m stable. I have review appointments over the phone every 6 weeks or so and it’s been nice to be able to report good news for once. I now have a medical alert card kept in my purse in case I have a seizure when out and about independently and a passerby stops to help. It describes what my seizures are usually like and what to do if I’m having one.
One thing the epilepsy diagnosis has affected more than anything is my attempt to get a Guide Dog match. When they resumed their services after the first lockdown ended, they conducted health risk assessments on all their clients to ensure nothing drastic had happened that might impact on the way their services can be delivered to that person. Of course, for me it had. They’re now still in the process of working everything out so that I can restart using their services. They have to ensure that all the staff who might come in to contact with me are happy working with me and know what to do in the event of a seizure. This includes Jenny. While I of course mostly understand why these things need to happen and that there are protocols needing following, I’m endlessly frustrated about the whole situation. Currently, it’s been 26 months since I was placed active on the waiting list for any potential matches. However, currently I’m not even active on the list. My place will be resumed in the same position as it was once they’ve done all their checks and are satisfied I’m still suitable for a dog. But for now, and god only knows how much longer, they’re not actively even looking for that miracle match. 2020, like all the other years ive been hoping for a Guide Dog, hasn’t been my year. I can only hope, yet again, that next year will be.
Due to my epilepsy, my memory doesn’t seem as sharp as it used to be. Before, I could pretty much remember everything. What had happened in my life on what date years previously; what I needed to do in order each day; what someone had told me over the phone earlier; when something was going to happen next on my calendar etc. Nowadays, all of that is slower if not nonexistent and it bothers me a lot. Often, I have a list of things to do in an order — for example, do the washing up, dry up, put things away, refill the cat’s food and water bowls — and I’ll completely forget to do something. Or, something will have happened in an episode of a program I watch all the time and the next day when watching the next instalment I’ll have completely forgotten. These days, I’m forever saying “oh sorry I forgot”. It’s irritating for everyone but none more than me. I get so frustrated because ive never been like that. Often, I’ve recalled things better than anyone I know. Not any more. Really, that’s the only damaging outcome of the epilepsy so mainly I’m grateful there’s been nothing more serious, touch wood. Nonetheless, it’s still frustrating beyond belief. My neuro nurse did say that once medication dosage is stable and seizures are under control, memory loss seems to improve for most patients. Not for me yet. At one point, it did seem like I was saying I’d forgotten things less often but that doesn’t seem to have continued. The nurse said that as I’d had quite a lot of seizures in quick succession all of a sudden maybe my brain wouldn’t fully recover from the impact. I guess not. Maybe, if I’m lucky, in time that’ll change. I’d love to have the memory capacity I used to again. It was good fun reminding people of things that had happened in the past or things they’d said they’d forgotten about.
Something positive that’s happened this year is the new addition to our household in the form of a gorgeous Abyssinian Guinea pig boar called Teddy. When I rehomed my Guinea girls this time last year, I swore to myself I wouldn’t get any more. I’d made too many mistakes with them to risk it again. But I broke that promise in October after spending a long time considering whether it’d work getting a new one. I researched more this time. I made a plan of how the pig could be more involved in the family, have more floor time and interaction. I didn’t bank on the help of any other member of the household, least of all Tamsin. And so, on the 11th of October, Teddy was brought to us. I’d been in conversation with his breeder for a while, describing exactly what kind of Guinea pig I was looking for and the circumstances in which I was getting one. Surprisingly, she had just what I was after in Teddy. She sent us lots of photos, which Tamsin described, to be certain. Then, she delivered him to us and we agreed she’d been right. From the moment she put him in my hands, I knew 100% I’d made the right decision. Since then, I’ve kept to my word. I spot clean the cage daily, doing a full clean once a week; Teddy gets fresh veg, hay and pellets daily; I keep the room his cage is in as clean as I can and Mum hasn’t complained so far; I wash out his indoor pen with a dustpan and brush, using hot soapy water to thoroughly clean it if it needs it. Almost every evening since his arrival, Teddy has spent his time in his pen in the lounge while we eat dinner and watch telly. Everyone chats to him and as long as I’ve washed my hands after eating and Coco isn’t about, I get him out for cuddles. He loves cuddles. Being reared in an environment where he was handled daily by his breeder and her family means he’s more social than any of my girls, from a pet shop, ever were. He’s becoming more and more friendly, coming up to the bars of his cage and sniffing our fingers and not running away when I go to pick him up. Already, things are going much better than it ever did with the girls. I wish I’d worked harder with them, researched more, known better. But I didn’t. I’m not in touch with their new owners but I’m sure they’re living much better lives than what I could give them at the time. My main comfort is that I did the right thing by them then and now I’m giving Teddy better.
Another thing to impact on the whole family this year is my great Nan, Olive, moving from her bungalow into a nursing home. She was diagnosed with dementia a while ago and it’s been steadily worsening ever since. More recently, she’d been having falls at home and hurting herself as well as not taking care of herself well enough, including washing and dressing. To begin with, she went into hospital after a nasty fall and was then moved to the nursing home for a trial period of 6 weeks. At the end of that, everyone agreed that the right decision was for Nan to stay permanently. Her care needs had become more than we as her family could manage and were too much for a home care package to cope with, unless they were there 24 hours a day. In the end, we all agreed this was best too. For a while, Nan and her brother were upset because Nan Olive had always adamantly said she didn’t want to go into a care home. But we all know that it’s passed the point where she can make reasonable decisions about that sort of thing. Plus, whenever anyone speaks to her on the phone or visits, Nan seems more than happy there. She talks about the lovely staff, nice meals and company she has. She says her room is nice and that they help her. What more can we ask for? If she’d been unhappy then it would’ve been harder. Thankfully, she seems to have settled well and I’m hoping she continues to receive good care and be happy there.
Other than that, not a lot else has happened this year, mostly due to the pandemic putting a stop to everything. In the last few days, Dad has moved into his own little flat which he’s renting. I think it’ll be weird for Nan and Grandad not having him around. I hope he won’t be too lonely by himself. He’s lived with company for the majority of his life so being self-sufficient might come as a bit of a shock for him. Luckily, there’s a chip shop across the road so I’m sure he won’t starve…
With everything that’s going on in the world, nobody can predict what next year will bring. For me, I hope it brings more time spent with Kieran, Imi and Josh; maybe an opening into employment; that magical Guide Dogs phone call; good health and happiness for everyone in my life. My sister will be leaving secondary school, turning 16 and starting a new chapter in her life at our local college studying towards A Levels. My cousin’s turning 18 and going away to university. Kieran will be finishing his contracted term of work for the council and hopefully offered a full-time job. Mum and Dad will be working on at their respective companies, hopefully doing well. Nanny Olive will be living on in the nursing home, hopefully enjoying her time. Nan and Grandad will be having fun with their home all to themselves again at last. Everyone else? Well, I guess we’ll all just be plodding along doing our best. After all, next year can’t be as bad as this one has been, can it?
A5Ramblings 