Firstly, and importantly, happy new year everyone! I hope you’ve all had a lovely time over the holiday period and are feeling good and positive for the year to come.
I don’t know about you, but I’m one of those people that has always kept certain sorts of things to myself. It’s just how I am. I see social media as a way to share my creative work and keep up with friends and family. I love seeing my little cousins are growing up, aunties and uncles are enjoying a much deserved holiday, younger family and friends enjoying gigs, being young, drunk and beautiful, older family and friends enjoying gigs and being old, drunk and beautiful. I love seeing the happiness. But I also appreciate how brave people are to share their down times. I don’t mean those cryptic, attention grabbing posts that say nowt but want sympathy for some mysterious non- happening. I mean real shit. They say it like it is. It doesn’t have to be big shit, not all shit is earth shattering in the scheme of things, or in hindsight, but it feels it at the time, and it’s bloody good to offload and even offend sometimes. And I wish I could do it better.
This isn’t a moan. People are great. I’ve had so much fantastic support online for my creative pursuits, then when I had my brain tumour and subsequent operation - wow, the amount of virtual arms I felt around me was incredible. Thanks so much to everyone that wished me, and Gary, well during that time - now that was real shit I must admit.
There are plenty of people far, far worse off than me, living through horrendous experiences, I completely acknowledge that, so don’t get me wrong, this is just my small story and all I can do is tell it in my way.
Since I was diagnosed in April (ish) 2020, but even more so after April 2021, the 23rd, so St George’s day, to be exact, when I had my op and slayed my own little dragon, there have been a lot of changes in both mine and Gary’s lives. I was registered as disabled. Gary is registered as my carer. Both of these things I hated. And I mean hated. I hated the fact I had to leave two jobs I loved. My independence. My work friends. The money. The financial hit was hard. I told Gary he could leave me if he wanted, more than once. I didn’t want him tied down to me and my crappy issues. He stayed, because he is incredible, and strong, and indestructible. The crappy issues meant that eventually I couldn’t manage running our holiday let cottage any more, which broke my heart. I was fucked, there’s no polite way of putting it. Going back to cleaning a whole house to COVID hygiene standards twice a week, two weeks after having a craniotomy was utter madness, but it had to be done, we couldn’t afford to pay anyone else to do it, and Gary couldn’t manage it all on his own. Enough was enough, so in September, we put it on the market and it sold within days. But that’s a story in itself, let’s just say it was stressful!
Getting rid of the cottage was a bittersweet experience. The relief at not having to cripple myself by working at a much harder physical rate than I was capable of was great. The loss of our beautiful cottage and the joy and pride it had brought us, as well as it having previously been Gary’s home for 11 years, was emotional, and got us both down. But me being collapsed in bed for days in between changeovers unable to function, with Gary and my son Aaron worrying away downstairs and doing all of the housework, shopping, everything, was all too much, so it had to go. I also had illustration work to do, but struggled to lift my pens or sit at my computer. I felt so fucking useless, and guilty. I willed and willed myself to feel better. It didn’t work.
No matter how much I rested, I just got worse. I couldn’t walk properly, couldn’t speak without stammering and slurring my words, couldn’t think or see straight, type or write without making mistakes, which I covered up by taking ages re-doing everything three times, so texting and messaging was wearing me out. I began to hate my phone - messages went unanswered, or were very delayed, which added to my guilt and anxiety. I was bumping into things, my head, arms and legs were jerking around without warning - not great when you’re holding a knife or whatever. My entire body hurt, in weird ways. And noise - don’t ask - tinnitus and the fact that my brain was so over sensitive was driving me mad. I blamed myself of course, for overdoing it. I felt like such a tit. Too embarrassed to go out of the house in case anyone saw the state of me and too bored with pretending I was fine when I really wasn’t. Unsurprisingly, dark thoughts began to creep in, and that’s when I knew shit was getting serious mentally as well. Enough.
I spoke to my neurosurgeon who had always said that these problems were nothing to do with either my tumour or the operation, so when he heard the issues were getting worse, he passed me over to a neurologist that specialised in movement disorders. Which was a step, albeit a wonky one, forward. At last, maybe we were getting somewhere.
A month ago today, I went for a hospital appointment. The doctor and professor were lovely, couldn’t have been nicer. I had a load of tests and examinations, and wobbled up and down a corridor a few times while they watched and rubbed their chins. Then they disappeared into a room and Gary and me chatted about nowt to a nurse. Then the doctor came back, and told me I had Dystonia and myoclonic jerks and they wanted to take blood for genetic testing, as they thought my condition might be symptoms of something hereditary. Wasn’t expecting that. So I agreed, and after a talk about how it may lead to difficult conversations with my family etc, gave the blood samples and we left. Importantly, for me mentally, the professor told me none of it was my fault, I couldn’t help the way I was, it had all just happened coincidentally at the same time as my brain tumour. So I wasn’t going mad, imagining it all, or being a hypochondriac. I was actually ill, not pathetic and useless. Thank you Sir for that.
When the usual follow up letter that also gets sent to your GP arrived, with more information, it said I have a ‘non-trivial neuropsychological condition’ and that they were taking bloods to investigate links to Wilson’s Disease, which is inherited if both parents are carriers. No, I’d never heard of it either. Apparently it’s when the liver can’t process copper, of all things, so it slowly builds up in your body, causing copper poisoning, that affects your brain, causing these horrible neurological symptoms. Obviously I consulted Dr Google, and it all made sense, but we’ll see. Whatever it is, I’m confident it’ll get sorted eventually, and at least I now have a point of contact about it all. Also, finally, I’ve got some medication, and it’s working. I can’t tell you how happy that makes me. I’m starting out on three tablets a day, building up to nine a day, but the difference in me after a week is already quite dramatic.
Hello life, let me enjoy you again.
I suppose the point of me writing this is, I need to stop being so fucking stoic. What a plank. Gets you nowhere. It makes your support system smaller - if nobody knows you’re struggling, they can’t help. And that isn’t fair on those that are actually, physically and unconditionally caring for you, like Gary. Selfish, really. As selfish as people who force their problems on everyone else, expecting them to fix everything, whilst not taking into consideration that they may have problems themselves. There’s a happy medium.
I now accept things. I accept the disability, not loathe it. That’s gonna charge nowt, hating anything or anybody gets you nowhere. The perks of a blue badge, (‘premium parking pass’ or ‘trump card’ as we call it,) and a free bus pass that allows a companion to travel with me, also for free, are small but important things. Extra space to get my charity shop hauls into the car, and free travel for Gary and me if he ever fancies a drink. I also now use noise cancelling earplugs when I go out to deal with the noise sensitivity/overload. So it’s not all bad. In fact it’s good. I know how I’m on with things now, and to build up to be able to get on with my illustration work properly again is almost like a dream come true, I exaggerate not.
2022 has got a lot to offer. Music projects and singing (which I was also too ill to do, no energy to breathe properly, it broke my heart, but is improving now), including working on three albums - one with my band Nellie’s Temple. One with Gary’s band Gary Miller’s Big Picture, and Gary’s next solo album. Animated films, two, which are brilliant and exciting and fantastical. A new ‘vintage emporium’ section in my Etsy shop - can’t wait to get that sorted. New prints and illustration commissions. But most importantly of all - time. Time for family, time for myself, time to think, time to rest, time to have fun and see friends. I’m still very, very fatigued, ache everywhere and not feeling at all right, but I can see light at the end of the tunnel with a much better mental state and focus.
So there you go. I can do it. I can share shit stuff. But it’s shit stuff that’s changed me, for the better in many ways, so it’s become good stuff, and if any of it is helpful to even one person, then it was worth it. It wasn’t even that bad, writing it, I couldn’t have physically or mentally managed this a week ago. It’s got me back in the mindset of blogging, and although it’s not a direct social media post, it’s a start. Anyway, I’ve got a doll’s house to tart up…. before the next one arrives. EBay, you are naughty.
Helen, 1st January 2022. Xxx