So I have been gone for a while, over a month. Haven’t been active on my Instagram account either other than replying to messages.
It’s been a strange month, well, slightly more than a month. I’ve been up and down and all over the place. I think I spoke about where I’m at with FND at the moment, being able to manage my symptoms but not being able to do too much. I’ve been bored out of my mind, not sure what to do with myself. I’ve been exhausting PS4 games and sleeping a lot. I even started applying for jobs; my friend vamped up my CV for the occasion. Didn’t have a lot of luck finding so few hours or something local. Applied for a couple but haven’t heard back.
I’ve got some exciting news to share, and I will be sharing more again as of now. Not every day, but certainly once or twice a week. I still have a post waiting in the wings on Mindful Meditation, and a couple others that are still half written in my drafts folder.
Please message me if there is something you would like to see on my blog. There are various links to my e-mail and Instagram on the right hand side of the page. And thank you so much for those who are following. I promise I will be posting more content now I feel like I’m getting out of the rut I’ve been stuck in.
I always hate when conversation with someone brings you to employment. The number of times I’ve had people say to me:
“Oh you don’t work, you’re so lucky. It must be so nice.”
Literally anyone…
No. Just no.
When you work full time and there’s a bank holiday or you have time off it’s the greatest feeling in the world. It’s not the same thing when you have a chronic illness that has forced you to leave your job(s) and you’re days are empty.
Sometimes you totally need it; if you’ve had a flare up of symptoms and all you can do is rest then that’s fine. But quite a lot of the time – especially with functional symptoms – you are this partially healthy person who can’t push their body too much, but still need some sort of purpose to your day. Yes I use some of my benefits to pay for every subscription going, but there are only so many shows you can binge before getting bored out of your mind.
I work from the age of 14 helping at kids ballet lessons. I got a job in a shop at 16. Then at 17 I was bank staff in the nursery where I did work experience, then later worked there full time. I had 3 jobs right up until my FND diagnosis. I tried to carry on with them after because I loved them all, and I wish I could be doing all three of them right now. I like to be busy, I like to have a purpose to my day; that hasn’t changed just because I got ill.
I struggled a lot to start with. Things I used to love became difficult or impossible. Ballet, horse riding, walking into town, walking over the fields at the back of my house for miles and miles, just walking full stop. I had to find other things to occupy my time. I read a lot, watch a lot of TV. The thing that kept me most occupied was gaming. I used to dabble when I had the time before I was ill. I’d always loved watching my dad play computer games when I was a kid. So I threw myself into that, it could distract me for hours; all the puzzle solving moulded into different games like Uncharted, Lara Croft and Assassins Creed. It’s a fantastic way to waste hours and hours. I game more than ever, have recently racked up an impressive 205 hours on The Division 2.
Here’s a terrible quality photograph to prove it.
I tried to get back into knitting, but struggled with the needles and the movement needed with my functional dystonia. Disappointed but not ready to give up, I tried my hand at crocheting, and I’m still going. I can sit for hours at a time with a crochet hook and some wool. I experimented a lot, found I struggled with thinner yarns and my tension is still all over the place because I can’t grip very well; but at the end of it you have this functional thing.
I made some little cards, for birthdays or Valentine’s day.
Some bookmarks that I can’t actually do now – wayyyy too fiddly.
I’ve almost finished this blanket for my sister.
There are lots of other projects that I’m working on: hats, scarves, a cardigan, another blanket, a top… I’m alright at blankets and granny squares, but I’m struggling a little with crocheting clothing, I’m not going to lie. It’s the measurements and counting rows and stitches; all a bit too much for my brain to work out.
I have been keeping a bullet journal too, though I’ve slacked off over the last few months. I really do need to get back into it. It’s relaxing and helps you plan your life. And I’m a bit of a stationary nerd so I just like using lots of pens…
These are just a few pages I’m quite proud of.
The most recent thing that has been keeping me occupied is doing gel nails. I’ve even got a little Facebook page for friends and family and do their nails too. Even though my hands are quite shaky a lot of the time, with gel it is easy to take your time over coats of polish or clear up mistakes. I’ve been getting better at it over time, so being more and more adventurous, trying out stamps and different methods I’ve seen in various Youtube videos or on Pinterest.
Here’s just some of the nails I’ve done, mostly my own!
All in all, I do what I can to keep myself occupied around the house, using a bit of my benefits here and there to fund things. Of course I’d rather be working and earning a living but, for now at least, I’m looking after my brain and body and doing what I can when I can. What do you do to keep yourself busy?
Functional dystonia is where my body cramps (mostly my hands and feet, but can be absolutely everywhere, including in my tongue) but there are no physical causes. Basically my brain either thinks it’s completely normal, or the messages it’s sending just get confused between the brain and the nervous system. It can be very painful, and resistant to most drugs. I can max out on diazepam and still be solidly cramped. That’s happened a number times, obviously with an ambulance crew being the people to administer muscle relaxants in those quantities; and they have to take me to hospital because of it.
It’s a weird one, can cause my limbs to take on shapes I never knew they could. And I found out that you can get cramp in your neck and tongue last year… that was not fun. I couldn’t talk or swallow and it was the most uncomfortable thing you can imagine; felt like my tongue was 10x bigger. Thankfully that’s only happened a couple of times, and touch wood it won’t happen again any time soon.
With managing everything I’m doing a bit better – which at the moment consists of doing stuff on a weekend and recovering from it all week – I haven’t had as many problems with functional dystonia as I have in the past. The little finger and the one next to it on both my hands used to be cramped up the majority of the time, curling over further than I can normally achieve, my nails digging into the palm of my hand. At one point it became the norm.
It still catches me off guard and is one of the earlier symptoms telling me that I’ve reached my limit or done too much. If I pick up on it early enough, my 4mg diazepam tablets hold off the worst of it; but if it goes too far, no amount drugs can stop it. Just got to stay vigilant and make sure I don’t push too far, because my brain certainly knows how to push back.
Edit: I totally jinxed it, had a seizure today and didn’t have diazepam in time. I am now sporting functional dystonia in both hands. It keeps relaxing a little, then tensing right back up again. Hopefully it won’thang around for too long.
FNDautology 