What A Year So Far –

So I have not posted for a long time, and I feel kind of guilty about that. Blogging has helped me a lot in the past, and it makes me feel wonderful if I can help out just one person who is struggling or make them feel somewhat normal in this crazy world of FND.

I keep having complete mental blocks, and I’ve been putting off writing for a long time. Now I’m running out of stuff to do in lockdown, I feel the need to post an update of sorts.

This year started out so positive. It was the longest I’d ever gone without having a seizure, I felt confident in myself, and I have booked myself into a nail technician course so I can start to think about getting back into a career doing something I love. Childcare is no longer an option, nursing is definitely out of the question. Life now is thinking about what I want and the practicality of that. There’s no point in having unrealistic expectations because I’ll just be disappointed. So a career in something that I enjoy doing and that calms me, one in which I can do from home… sounds pretty good to me.

And then COVID 19 happened. *facepalm*

I don’t feel all that stressed, but clearly there is something going on in my brain that I’m not aware of. As soon as we went into lockdown, my legs stopped working. It will be 6 weeks on Sunday. My right leg is a hell of a lot better; I’d go as far to say it’s almost normal. But my left leg, as always, absolutely hates me.

I’m still using my wheelchair and relying on my family a lot to help me out with Buddy. It’s almost a good thing that they’re trapped in the house with me. There’s nothing I hate more than relying on other people and not being able to be independent and walk my own dog, but at the moment, I physically can’t.

The fact that I can’t get to the chiropractic is playing a huge part in my decision to rely on my wheelchair rather than push myself and use my crutches like I normally would. If I twist, twinge or pull my back, things are going to get a hell of a lot worse for me. Rosie the wheelchair isn’t ideal, but she’s a damn site better than being bed-bound and in agony with back spasms and not enough medication to keep them at bay. I don’t even want to think about what it would take to get enough co-codomol, naproxen and diazepam to get me through. Potentially the sacrifice of a limb, the blood of a virgin or my first born with the rate things are going.

I’m joking of course, that’s a bit sinister… but it would be an ordeal to say the least.

The thing that’s really got me down, is the fact that I’ve put on half the weight I managed to lose last year. It shouldn’t be a bad thing, it shouldn’t be depressing me more than the current state of the world, but selfishly, it is.

I worked hard to lose that weight. Admittedly a little of it is from Christmas, but who doesn’t put on weight over Christmas? Part of it is the fact that the muscle I built up from walking has just wasted away or turned to fat in the 6 weeks I’ve had very limited mobility.

Basically it’s got me looking up exercises I can do to keep up what strength I build up while I’m not as mobile as usual. And then that got me depressed too, because the vast majority of Youtube channels or fitness apps don’t take into account the fact that not everyone has full use of all their limbs. My friends have therefore been tasked in helping me to find exercises that would work, or ones that could be adapted to work for me. At least it’s keeping them busy in lockdown, right?

Anyway, I’ll update you on my limited mobility exercises when I manage to get some sort of routine down. Or in 6 months time when I finally have the inclination to write a post.

I’m going to end it there before I ramble on too much and bore you all to death. Hope this reaches everyone in good health, or relatively good health at least. Stay home, stay safe and stay positive. And please feel free to share you exercise experiences with me. Would love some pointers from fellow FND sufferers and Spoonies. For now, enjoy a photo of Buddy having a snooze on Rosie. He looked too cute to move so I was trapped in the lounge for a solid 45 minutes.

Buddy getting Rosie the wheelchair all hairy… Good job he’s cute.

Speak to you soon.

Today’s Rant: Independence –

Today I want to talk about something has been getting to me for a while now, but a lot more lately; and that something is my independence – or lack of it thanks to FND.

If you’ve read my blog before or if you know me, you know that I used to be the absolute definition of independent. I had a job from 14, helping my dance teacher with classes, demonstrating for the younger kids after she’d had her hip operation. I loved every second of it, and though I got less than £5 an hour, I was earning a wage and I was thrilled. As soon as I turned 16 I got a weekend job at a retail store in town, and when I did work experience, I stayed on at the nursery as bank staff. I did shifts after 6th form and college, then ended up working there full time when I dropped out of both.

Obviously at that age I couldn’t drive, so walked everywhere. Come wind, rain or scorching sunshine, I walked there, did my shift and walked home. I was adamant that I would support myself with my jobs, taking on my phone bill my dad had preciously paid the second I got my first month’s wages from the retail store. I didn’t want to rely on my mum for my toiletries or anything, I got them myself. If I wanted clothes, I saved up and bought them.

What I’m trying to say is, I was very independent from a young age, and I absolutely loved it. Then came FND.

It’s hit me hard this month especially; with being seizure free for almost 12 weeks I got excited about the opportunity of getting myself an adapted car so I wouldn’t have to rely on my parents, sister or grandad for lifts. I could go out and do what I want, when I want… wouldn’t have to wait around or fit into anyone else’s schedule. And obviously if you have seen my previous posts you will know I have a puppy. For those who haven’t I have a puppy, he’s 20 weeks old and a little devil for the majority of the time. But he’s a distraction and a responsibility and I love him no matter how many times he wees on the carpet or nibbles my hand instead of his toys.

I had a seizure the other day, almost went 12 weeks, so 11 weeks and 4 days is currently my record. It was a nasty one, caught me off guard and has left me feeling like complete and utter crap. I’m still a leg down, and have really been struggling with that.

It happens a lot, and I can’t move my legs properly anyway; so why does it hit me so hard every single time?

I feel like I’ve been up and down on a roller-coaster ride over the last few days. I keep telling myself that it’s not permanent, it will get better and I’ve done it a hundred times before so this is just one more set back to add to the list. I think with having Buddy it’s hit me harder, because I want to take him out for a good walk like I have been daily since he’s had all his jabs (minus a few days from my last set back). But I can’t do that right now. He’s been off the lead in the garden doing recall and some training, but even that isn’t enough stimulation for him, so he’s been an absolute nightmare being penned up in the house with me and by bad leg.

Guess it’s guilt that I’m feeling there, that I can’t give him everything he needs during this relapse. I’m having to rely on my mum and grandad to take him out in the garden and I hate having to rely on anyone. At a certain point I know you need to, you can’t do everything yourself… especially when you have a brain that doesn’t know whether it’s coming or going.

So basically this post has been a long rant. I know that a lot of people suffer with the loss of their independence; it’s not just those with FND. It’s anyone with any kind of chronic illness, and it sucks.

The things that I have been doing independently have been stripped away from me the last few days; my dog walks being the main thing, but it’s also little things as well. When you’re on 2 crutches around the house all the time, it’s stupid things like, getting someone to bring a drink to you or asking them for a snack or some paracetamol. It’s little niggly things that make you feel like a complete and utter burden. It probably sounds pathetic, but I’m sure those of you who are in the same position as me understand what I mean. Like, I want to be doing these things for myself. I don’t get any joy out of sitting around and asking other people for stuff; it makes me feel the opposite of joyful, it makes me feel like s**t.

These days, independence for me is taking my dog for a walk on my own. It’s washing my hair all by myself. It’s cooking a meal without any help, even if all I do is bung a load of ingredients into a slow cooker.

My idea of independence has changed a lot over the last 6 years. Although it feels like a bad thing right now, it’s not. I just have to alter my perception of the world, celebrate the small achievements and not put so much pressure on myself. Today I’m down to 1 crutch around the house and taking my own dog out into the garden; and that’s great. Remembering to celebrate the little things and not to dwell on the bad things is hard, and it isn’t easy; but it’s so important, for any chronic illness I think.

Sorry for the rant, but I really do want to know, what does independence mean to you?

Speak to you soon x

Long Time No See –

It feels like forever since my last post. I’ve been absolutely terrible at keeping a regular thing going and I apologise for that, but life gets in the way. If you’re not having a flare up then you’re caring for a new puppy… you know how it is.

I was thinking about maybe doing a vlog type thing on my Instagram story; just letting you all know how I’m getting on with the puppy and managing my FND. It has been a bit of a challenge at times – a couple of weeks ago especially. But as always I have my wonderful family to help me out.

Over the last month or so I have definitely been pushing myself to the max, and have really been teetering on the edge of a seizure as a result on more than one occasion. I’m 7 weeks seizure free, which at the moment is my all time record so we will have to wait and see how the next few weeks pan out.

Buddy and I have just about got into a routine of sorts; and this morning I’d be feeling a lot better if I didn’t have disturbed sleep and an abundance of vivid nightmares. He’s just waking up and is ready for a walk and I really need a nap; but it will have to wait. If I really tired him out I’ll get at least 2 hours of down time when we get home… the only thing is, after a walk I desperately need the down time! The best thing is to take him somewhere new – lots of new sights, people and smells – and then we don’t even have to walk fast or far to tire him out.

As for the FND side of things, like I say, I’ve been pushing it… big time. I’ve been pacing myself when I know I’ve done too much when normally I would just stop, and then I’ve pushed on right through until I urgently need to nap or sleep. Not the best thing to do, and my Neuro-Psychiatrist would be shouting ‘REMEMBER THE BOOM AND BUST’ at me right now, but it’s only temporary and I’m making it work.

For all those who haven’t had the opportunity, or are on a waiting list for CBT, the boom and bust theory is essentially this expertly drawn image >

Can’t tell you how long it took me to figure out how to present ‘Boom and Bust’.

Essentially the upwards slope is the ‘Boom’ where you do a lot, pushing your body when it may not be capable of coping. The downwards slope is the ‘Bust’ where you make yourself ill from doing too much. The more you manage your symptoms, the slopes become less inclined and levels out much more. You don’t push yourself too much, and your body doesn’t suffer for it.

Obviously, as with a lot of things, this is easier said than done. One week you might have an unusual amount of plans for some reason, or a few social functions to attend, and of course you want to do them all. But when trying to regulate your activity levels to avoid a major ‘Bust’, you might find yourself having to say no to certain things. Please know that this is not a bad thing. You may feel guilty for cancelling plans or wish you were there, but in the long run, you are able to keep on top of your symptoms. This is not a guarantee, though, as FND has a habit of catching you off guard and throwing you in the deep end. In theory – and most of the time in practice – you can manage your symptoms through your activity.

There’s a helpful website that talks about ‘The Downward Spiral of Boom and Bust’ and ‘The 4 P’s’ to help a person manage their activity so you don’t push past your limit and suffer because of it. It is probably far better at explaining the whole concept than I am.

Moving Into Balance Website

I hope you are all doing well, and I really am going to try to get a post up every week. As always, message or email me if you have any topics you would like to be covered, my Instagram account and e-mail are linked on the right hand side of the page (if you’re not on a phone).

Speak to you all soon! x

Where I’m At –

As I’ve mentioned before, I am so fed up with not doing anything with my life. I’m managing my symptoms well, have my seizures down to every 2 months or so (the one yesterday being a bit of an exception; I discovered overheating can trigger them too). I generally know my limits and I know when I can and can’t push them.

Sometimes I weigh up whether or not doing something is worth the backlash my brain is going to give. I’ve been doing that a lot more recently, pushing right to the edge because I’m going out of my mind being kind of well but not able to do anything to threaten that.

I also mentioned in my last quick post that I was looking at jobs. I wanted to see if I could find something that was maybe 10 hours a week, a couple of 5 hour days in an office or something like that. I soon came to realise that jobs like that rarely come up. An employer wants someone who can do overtime and cover for people if they’re sick. They want someone reliable, and that’s not me.

When I thought about maybe committing to more hours, I remember working when FND first appeared in my life. The thought of letting people down at short notice makes me feel sick; it happened a lot before I handed in my notice for the 3 jobs I was holding down and loving… I just couldn’t do them any more.

I want to get back to work, and I will eventually; but maybe now isn’t the right time. I don’t want to push myself too much, end up back in the downwards spiral that I’ve somehow managed to redirect upwards of the last year or so. I can manage at the moment, and I will get there. I just need to take it slow, think things through and be realistic.

Speaking about thinking things through… I’ve wanted to get a dog to add to our family for some time. Initially I was set on a dachshund, but being the owner of a wire-haired pointer and a griffon korthal, it really isn’t a very good idea, as a dachshund is about the size of their heads. The poor thing would be trampled as our dogs like to play rough.

I started looking into smaller breeds than Mina and Galaxy, but big enough that he could easily join in with their boisterous play. And he would have to be a he. Although Mina has taken a back seat since we adopted Gally, they are both dominant bitches and adding another girl to the equation would be a disaster waiting to happen.

The beagle stood out to me: friendly nature with other pets and humans, energetic, not too big and not too small. I got researching and fell in love with the kind nature and inquisitive mind of the beagle, and so I looked for a local kennel club breeder. There were a couple, but there was one just around the corner. I e-mailed to see if she was planning on having a litter at the end of this year. It turned out that she’d just sold the last pup of the current litter, and was due another one from one of her other dogs in 5 weeks time; she said she’d put me on a waiting list and let me know if she had any dogs in 5 weeks.

The next day she messages to tell me that someone has messed her about and she has a dog available. Slightly shocked and excited at the same time, my Mum, Grandma and I went to go and see the pup and talk to the breeder.

She was extremely helpful, bred show dogs for herself and sold off the ones she wasn’t keeping as pets. We met the mum and the dad, and had snuggles with the little boy which was absolutely fatal.

I picked him up on Monday.

I know owning a puppy is going to be challenging. I’ve got a lot of help at home, and so far I’ve been doing good making sure I’m managing my sleep and how much I’m doing. I did have a seizure after a trip to the vets yesterday, but I’m almost certain that’s because I overheated. I have never been so hot in my life. I’ve been drinking plenty, making sure I eat small amounts as I can’t eat a lot when it’s this hot without feeling ill. It was a little set back, and I bounced back pretty well… better than I was expecting to.

I’m going to make the most of puppy nap time, get another post out soon and introduce you to the little man. Speak to you soon.

Been Gone for a While –

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.

Speak to you all soon!

Motability –

Last week I picked up my second Motability car, and I just wanted to make a post about the scheme to share how much it has helped me.

Motability is a charity that helps disabled people get out and about in lease cars for an affordable price. You must have the enhanced mobility component from PIP in order to qualify. You then pay that portion of your PIP to lease the car you have chosen; some are the full amount, some are less. For a higher spec car you may have to pay some money in advance, but there are cars that do not require a down payment at all. In your lease you get to have 2 names drivers, both of whom are covered by insurance of a company who work with Motability. The car is taxed, serviced and MOT’d by Motability, so you don’t have to worry about anything. You keep your car for 3 years, then choose a new one.

I first heard of the Motability scheme a few years ago, I’m pretty sure my mum is the one that found it and thought it would be a good idea as we were struggling with getting the wheelchair in our car. Not really knowing much about it, we traded in our car for a Seat Alhambra with all the bells and whistles: electric doors electric boot, heated seats, parking sensors and a little camera when in reverse. It was lovely, and has served us well the last 3 years.

There were a couple of things that weren’t quite practical, for example, although the boot is really big, my wheelchair didn’t stand up in it because the roof just wasn’t quite high enough. That meant we had to lie my wheelchair down, and then couldn’t get anything else in the boot. So it was a huge boot, but the space was just wasted.

This time when it came to getting a car, we had an idea of what we were looking for. We went to Motability’s event at the NEC to have a look at the cars that were available (as the list is being updated all the time) and had a short list of cars we liked, and ones that would work with my wheelchair and what-not. The was of course cut down by the down-payments required, with my PIP running out in a couple of years (and me being concerned I won’t get the higher rate for mobility when it’s renewed) we didn’t want to be spending a fortune on a car we may not be able to keep for the full 3 year period.

In the end, the list came down to 2, and once we saw the Jeep Renegade, we were sold. With only one in the country at the time we were ordering, we had that one! The guy at the garage was very helpful, answered all the questions we had and gave us more information on Motability. When you return your car to pick up the new one, the sales person will do a check over, basically make sure the car is in good condition; and if that’s the case, then Motability give you some money to say thank you for keeping the car in good condition. The payment could be anything from £250 to £500! With that in mind, we did get a higher spec model of the Jeep, just because we could use that money back to pay for it, as we were assured the Seat would at least get the lower payment, if not more!

All in all, we are now proud owners of a Jeep Renegade that stores my wheelchair upright in the boot with room to spare for shopping or hold alls and what-not. It’s a fabulous car, and only has a 1 litre engine so my younger sister can be a named driver on it. She has a little go-cart of a car, and it’s always a challenge getting my wheelchair in. When we do, you can only really have 1 other passenger in the car which isn’t ideal. Now we can swap cars with my mum for the day and head out in the jeep with no worries.

From talking to Jeep’s Motability sales person, our concern of me not getting the higher rate for mobility with PIP is less of a concern than it was before. He reassured us that, if the worst should happen and Motability take the car back, they won’t just leave us without a vehicle, they give you some money towards sorting out a car of our own. That was a massive relief for me, as my parents obviously traded in their car for our first Motability car, and I wouldn’t want to be the one responsible for them not having a vehicle to use. It also gives me peace of mind, because although I might not qualify for PIP’s higher rate for mobility (though I can’t see that I wouldn’t, but it is Capita that assesses me so I’m not getting my hopes up. Had a rough time with them before) I’ll still be able to have a vehicle that gets me out and about.

Anyway, that’s enough waffling for now. Sorry I haven’t been posting a lot; been quite busy again… got a feeling I’m going to pay for it over the next week or so but I’ll just have to take it easy. I’ve got lots of ideas for posts, just got to get them typed up and onto my blog. Below I will link the Motability website, just in case you want to know more!

https://motability.co.uk

My new Motability car, the Jeep Renegade!

Keeping Busy With Chronic Illness –

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?

Speak to you soon.

Symptoms In More Detail (Part 7) –

I have saved NEAD until last for one reason: all of my other symptoms link to this. If ever I do too much or push my other symptoms to their limit, it leads to a non-epileptic seizure.

My seizures can range from looking like I’ve fallen asleep and twitching a little to full on spasms and jerking you expect to see with an epileptic seizure. I remain conscious the whole time, I can hear everything that is going on around me, I just can’t speak or get my body to respond.

When they first started, they happened out of the blue, caught me totally off guard. They terrified my family and friends when they happened, resulted in many trips to hospital in an ambulance. It became a big responsibility to be out anywhere with me in case I had a seizure. I didn’t go out on my own because I was scared I’d have one in public and no one would know what was happening. I’m sure a lot of people with NEAD know the feeling; not being able to trust yourself.

I was lucky enough to get a spot in a trial taking place at The Barberry. I was so sad when they said my paperwork hadn’t been sent off in time to be a part of it, but they offered me the CBT (cognitive behavioural therapy) from the trial by way of apology I suppose. The staff were fantastic, and it was incredible being able to meet other people who knew exactly what I was going through. Learning about my seizures more helped me so much, and after the course of CBT I went from having multiple seizures a day to once or twice a week. It was an amazing improvement.

2 years down the line, and a lot of learning later, I can go about 4 to 7 weeks seizure free. I can tell when I’m going to have one by a strange feeling in my head, almost like cramp in my brain. Then I get the pull down one side of my face (looks like I’m having a stroke) and I know I need to sit down or get somewhere safe. When I start cramping, I take my oral diazepam and that holds off the worst of it; but it has to be taken ASAP… any later and it won’t work. Once I’m sat or laying safely, I relax as best I can. I find mindful meditation and various breathing techniques very useful at this point. And from there, generally it doesn’t come to anything, and provided I take it easy, I don’t have a seizure until I really push it… Or until one catches me off guard.

It’s great being able to manage my seizures so well, but it means that I can’t commit to much. I haven’t worked for 4 years now, and I’m not sure how my body would adapt going back to work. Don’t get me wrong, I want to get back out there as soon as possible. I was always very independent, got a job as soon as I could and paid for my phone contract and things for myself as soon as I could afford to. FND knocked me back a long way, and although I’m doing really well and have made a lot of progress, I don’t want to push it. I said before about being concerned about pushing myself to do physiotherapy and ending up in a downwards spiral; this is the same. I need to have more control, be on track more than I am now before I look at getting back to ‘normal’… my old ‘normal’ anyway.

Symptoms In More Detail (Part 6) –

Foggy head is going to be a short one to cover. It’s basically the feeling of cotton wool filling up your head. You can get easily confused and struggle to concentrate on anything. If I come out with anything stupid, where most people would blame it on the blonde, I blame it on the Foggy head.

It’s not a very technical term, but it describes the symptom well. I’m not sure what causes it, and I’m not sure medical professionals know either. I am, however, sure that a Foggy head is a symptom of many other conditions, including anxiety & depression. I remember feeling like that through my GCSE’s at school, trying to revise and taking none of it in. Between the ages of 15 to 18 I struggled terrible with my mental health, and that’s what brain fog makes me think of whenever it strikes.

Symptoms In More Detail (Part 5) –

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’t hang around for too long.