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.

Helpful Link –

After my non-epileptic seizure the other day, I have felt like absolute crap. I’ve bounced back reasonably well, but it never seems fast enough. Because of that I haven’t prepared a proper post, but I want to stick to posting daily…

I decided I would put up a link that was very helpful to me when I was first diagnosed with FND. It is a site set up by Professor Jon Stone who is one of the leading researchers and doctors in functional neurological disorder. Since I first looked at his site almost 5 years ago now, he has updated it no end, and it is even more informative now than it was all those years back.

https://www.neurosymptoms.org/

Not only is it good to look up and understand your own symptoms, but it’s an excellent resource to give to family and friends to help them understand too. I hope you find neurosymptoms as useful as I have! 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.

Symptoms In More Detail (Part 4) –

Headaches & migraines are also things that have been a problem for me throughout my teenage years, mostly linked with my monthly cycle. That seems to be a bit of a hereditary thing.

My FND seemed to start with a migraine, and I had a constant headache for several months after to that first ‘episode’. In that time, the migraines that came in between seemed to cause these ‘episodes’ that were later recognised as seizures. It was clear then that we needed to get them under control.

Just an early warning, the next part might be too much information for some; but honestly I talk about this so much I don’t have much of a filter for tmi these days.

When I say I had a constant headache, I mean it was throbbing all the time. And I’d had migraines before, but these were horrific. I’d get this shooting pain down one side of my head that felt like it was splitting my head open. I’d have patches of my vision replaced with black blobs and what I describe as static (like on a TV) around the outside of my field of vision. I would be horrendously nauseous and heaving but never actually sick. My speech would go, I’d go to say words and nothing but strange sounds came out; and the more I tried to speak, the worse it got. Through all of that I couldn’t stand the light, had to shut myself in the dark.

I was on a selection of different drugs for a long time. Some helped to start with then all of a sudden didn’t, and some just made things worse. I forget the names of a lot of them, but I do remember propranolol working well for the longest period of time. There was about a year of trial and error of different drugs to control the migraines, and eventually we found amitriptyline.

I have been on amitriptyline since, starting on a low dose of 10mg. I now take 40mg every night (so still a low dose) and it has pretty much stopped the migraines. I still get headaches around my time of the month, and some symptoms of the migraine without the pain in my head which can be a bit weird. I just know to take it easy and not push my body too much around that time.

Unfortunately that seems to be the way of dealing with functional symptoms; being aware of what your body is telling you and not doing anything to set it off. That means a lot of days where you want to do things but know you can’t push yourself. I’m taking advantage of those days at the moment, writing blog posts and speaking to other FND sufferers on Instagram… and gaming of course. Just doing things that require little energy and only a small amount of concentration.

This post is up a little later today because I’ve only just finished writing it. Definitely going to try and keep up posting daily though. And hoping to have some more uplifting posts coming soon; going over my symptoms and what things used to be like has been a bit more overwhelming than I thought it would be. Speak to you soon.

Symptoms In More Detail (Part 3) –

Chronic fatigue & chronic pain are also kind of difficult to describe. I’ve suffered with chronic fatigue for as long as I can remember, dating back to when I first started high school. I would always feel tired and achy and struggle to wake up even when I’d had a good night’s sleep. I was the teenager that preferred to nap after school than go to the park on the way home or head into town.

I had glandular fever a few times through high school, and that’s when the chronic fatigue was at it’s peak. I’d sleep for days and still feel exhausted. I’d ache from moving from my bed to the sofa in the lounge. Who’d have thought it could get worse than that?

Now chronic fatigue limits me more than not being able to move my legs properly does. There are no aids you can use to help, no pills you can take to remedy it; same for chronic pain. It’s just there for the majority of the time, and you’ve got to listen to your body and take it easy. You just have to sleep for 16 hours and not punish yourself when you don’t feel rejuvenated when you wake up, then sleep for another 16 hours all over again.

I’ve had a lot of people bring up CBD oil when it comes to chronic fatigue & chronic pain. Personally I have never tried it. I’ve seen posts from people who have in various FND groups on Facebook mostly; some swear by it and some say it didn’t do anything for them. I think it’s down to the individual, like anything. Some things work for some people, and don’t for others. Maybe I’ll give it a try in the future, it’s just a lot of money to spend and not work out when you’re living off benefits, in my opinion anyway.

I like alternative therapies, mindful meditation, reflexology & aromatherapy. All of which I have tried and found helpful. I think it’s a little to do with distraction, getting your mind to focus on something else; but if it works for a short while, who can fault it? Plus, mindful meditation is a useful skill to have anyway. It can help with anxiety and stress as well as pain, but does take practice. Just like everything else in life, it comes down to trial and error – try different things, see what works for you.

Symptoms In More Detail (Part 2) –

Pins & needles is a strange one. I’m sure everyone is familiar with the feeling from laying on an arm too long or sitting in a strange position for any length of time; your limb goes to sleep, and as it comes back, you get the sensation of being pricked by thousands of tiny pins and needles. It’s a sensation I feel all the time in my arms and hands, one I get in my legs and feet when I’ve done too much. It’s not always severe like when the blood is flowing back through your veins, sometimes it takes on the form of a buzzing or vibrating; but it’s always there.

I don’t know whether this is a symptom of chronic pain, chronic fatigue or FND or whether it’s just all linked together. It’s one of those the medical professionals don’t seem too bothered about, because obviously it’s not having a dramatic impact on my health… but at the same time, I feel that sensation all day every day, to the point where it’s now normal or an achievement if I wake up and it’s subsided slightly.

As for managing it, it’s certainly worse when I’m fatigued and done to much, in the sense that it spreads to my legs as well as increases in intensity. But I haven’t found anything yet that makes it go away all together. If and when I do, I’ll be sure to post it all over the internet.

Symptoms In More Detail (Part 1) –

So I went over the symptoms that plague me thanks to FND and NEAD, and decided that today I would start to cover some of them in more detail. The things that affect me the most are functional muscle weakness, pins and needles, non-epileptic attack disorder, chronic fatigue, headaches & migraines, functional dystonia & foggy head.

Functional muscle weakness is always present in my legs. It hasn’t always been that way; it used to only happen after a seizure. Now I can’t pick my legs up properly at all, and when I try, it brings on a non-epileptic seizure. There are also different levels of functional weakness I experience, from every day not being able to pick my legs up (but still able to walk) to not being able to move them or weight bare at all. This can also happen in my arms, though it is rare at the moment as I’m doing my best to manage my symptoms.

It’s quite hard to describe the feeling of functional muscle weakness, but I will do my best. It basically feels like my brain is telling my legs what to do, and they either don’t do it straight away (there’s a delayed response) or they don’t do it at all. They also feel slightly heavy, almost like I’ve got weights on my legs or something. I can walk on carpet kind of okay, hard floors are the best because I tend to drag my left foot a lot (the left is worst than the right) and on hard floors I just glide. When I put shoes on I have to use a crutch or two to get about, and when I am outside on concrete or grass I need to use crutches too. Friction is not my friend. I can’t walk far, as I tire out easily, get quite breathless and it just completely wipes me out for the next few days thanks to chronic fatigue and chronic pain. Because of this, when I know I’m going to need to be out for a while or walk a fair distance, I use my trusty wheelchair Rosie.

When I first had to use a wheelchair, I remember bursting into tears. I was a dancer, so admitting that I couldn’t use my legs properly was a big thing for me; it literally broke my heart. But soon I realised that the wheelchair wasn’t a bad thing or something to be upset about. The wheelchair helped me do the things that my brain and legs wouldn’t let me. I could get out with my family and friends, I could do a food shop on my own. Basically, it gave me some of my independence back.

I had some physio-therapy a couple of years back at a neuro-rehabilitation clinic in an attempt to give me some more movement in my legs, and prevent the bad flare ups of not being able to move them at all that were happening regularly at the time. After a few months I had to stop, as my seizures were stopping me from progressing. Basically I got to the point where I needed to push my body to get results, but my brain pushed back. My physio and I decided that I needed to work on my seizures before I could progress any further with my functional muscle weakness.

Now I’m not doing too bad. I generally know my limits, and when I push it too much, I know how to rest and let my brain and body recover. My seizures are mostly under control through a small dose of Amitriptyline and being able to manage my symptoms better. I’d like to start physio again, but there is one thing that is concerning me:

If I start pushing myself too much, will I end up in a downwards spiral and lose all the progress I’ve made over the last two years?

For now I don’t have an answer for that, but I will be working on the courage to try neuro-physio again. I’m not happy with where I am at the moment, obviously; but at the same time, I know things could be so much worse. I think I just need to feel like I’m on the straight an narrow a bit more, and find the right neuro-physiotherapist to be able to help and support me.

I hope that, if you experience functional muscle weakness you are able to understand where I’m at with it right now; and that if you have never experienced it, I’ve described it well enough for you to have a small inclination as to what it’s like, and the impact it’s has on your life.

Introduction –

Just a quick post to say hello. I’m still getting used to WordPress and figuring out how to use it, so there might be a few changes coming to my brand new blog. Apologies if it’s confusing, I will get there, I promise.

Please check out my story if you are interested, and I’m sorry if there are any typos. I did skim through it but I have undoubtedly missed one or two… maybe more.

If you have any comments, please feel free to write them, and you are more than welcome to get in touch with me via e-mail or Instagram message. I’m happy to answer questions and would love to hear from any of my readers. The link to Instagram is on the right hand side (I will let you know if they move in the future), and you can contact me at the following e-mail address:

fndautology@gmail.com

Thank you for coming to my humble little blog; I hope to be posting regularly with all sorts of content, mostly sharing my experiences and trying to raise awareness for FND. If you have any requests or FND topics you’d like to discuss, don’t hesitate to let me know.

Speak to you very soon!