Interview With An FND Carer –

I put up a poll on Instagram yesterday and asked what you guys would like to see on my blog: a post about Motability, or an interview with an FND carer. So today I have sat down with no other than my mum (Moma Jo), who cares for me on a daily basis and has been there for me throughout the toughest years of my life.

Why are you an FND carer?

Because my daughter has FND. She got ill and I care for her, simple as that.

Prior to my diagnosis, had you heard of FND?

No, I had not. I had very little understanding of what a condition like that could be like. To a degree, you had been like it for several years prior to your diagnosis with chronic fatigue and battles with anxiety and depression.

What does your care role involve?

Recognising when something might be happening (ie. a seizure) and trying to make sure you are somewhere safe and as comfortable as possible. That’s when I will administer drugs, now only diazepam, but in the past has been all sorts. Occasionally I’ll make the decision when it’s gone on too long and if I need to call an ambulance. It’s not something I do lightly. If it does affect you moving around, I help you around the house with your wheelchair, help you dress, and help you eat your meals. We have a Motability car so I can take you to appointments and out shopping while easily being able to take the wheelchair. Generally you can’t walk very far, even on a good day, so we usually have the wheelchair as back up.

What is it like caring for someone with FND?

Unpredictable. It can be upsetting sometimes, particularly when you’re having seizures. When it first started it was really scary; not now so much… we never knew what we were going to get everyday, now we are in more of a routine. The other thing is, you can’t explain to anybody what it’s like. When we went away with our family friends, they obviously knew you were poorly, but they had no idea of the extent of how it affected us day to day until spending a week with us.

How has being an FND carer changed your life?

Well, work wise I have reduced my hours dramatically to be around; I am lucky to have a job that is flexible and that has allowed me to do that. It’s changed what I do socially or leisurely because I have to consider whether it’s alright to leave you and even if you are, if I feel comfortable. Having moved house and being all on one level along with you being able to manage your symptoms more means you’re coping better and you’re not relying on me as much, but I’m always about if I need to be. For example, last weekend I stayed at our boat over night for the first time in a few years. I’ve been over lots of an evening, but would normally come back.

What are your coping mechanisms when it’s been a difficult day/week?

Wine. (she asked me not to put that, but it was the first thing she said!) I binge watch a lot of TV, spend time outside gardening. I don’t really know, I just cope… I have to.

What do you find most difficult about caring for a family member?

It’s really lovely when you’re well, I love to see all of you happy and well but particularly you. But when you’re really poorly, it just feels so hopeless. It’s a roller-coaster.

What advice would you give to someone who finds themselves caring for a family member/spouse/friend with FND?

Just try and keep up beat as much as possible. We tend to make fun of things, your symptoms; and it’s not in a horrible way. I suppose that’s one of my coping mechanisms, making fun of it. Most importantly, be there for them. It’s all you can do isn’t it…

My mum, best friend and carer all in one!

Alternative Therapies –

So I haven’t posted for a few days, but been quite busy – for me anyway. This is my down time, so I’m making the most of it by being productive and preparing a few posts for the next few days. I’m going to be covering a variety of topics including Motability, volunteering and today I’d like to talk about alternative/complementary therapies.

I mentioned in another post that doctors seem to dismiss alternative therapies, and I think that is a big mistake. Yes the effects aren’t long term, but if they can even slightly relieve pain or anxiety then surely they’re worth it; in my eyes anyway.

A lot of people with functional symptoms are on waiting lists to see various neuro-psychiatrists and neurologists all over the country… I know I was waiting almost 18 months, and in that time I was stuck in limbo not knowing what to do or how to help myself. It’s a horrible situation to be in, and I wish I would have looked into alternative therapies sooner.

Ear Seeds (Auriculartherapy) –

Back when I struggled with anxiety and depression I used ear seeds (a form of auriculartherapy) to help with my anxiety. When the seeds are placed on specific points and massaged, it stimulates the body’s nervous system and helps you to feel calm and bring the body into balance. They worked for me, and I used them a little after my diagnosis, getting me thinking what else there might be out there.

Mindful Meditation –

I discovered mindful meditation in my search of alternative therapies. I was talking with my friends about it for a while, and decided to take a course in mindfulness. I used the book written by Mark Williams and Danny Penman – mindfulness, a practical guide to finding peace in a frantic world. It is absolutely fantastic, gives you the building blocks for mindful meditation and comes with a CD full of guided meditations. I’d love to go into more detail about the course and how it has helped me over the last couple of years; so I will be preparing a post in the near future. If that’s something that interests you, watch this space!

Aromatherapy & Reflexology –

Aromatherapy was something else that I came across. I was sceptical to start with, not sure how smells could help relax you or make you feel better, but paired with meditation or even calming music, I found it to be very relaxing. Admittedly it’s not something that I still use, but while I had guided sessions through a form of rehab it was fab experience. I also had some reflexology with the same woman who talked me through aromatherapy, and was surprised by how much of an effect it had on me. Reflexology is the theory that certain points of the feet link with your nervous system, and my releasing pressure through massaging, it helps to balance out your body. Certain points in my feet were always knotted, the area linked to the adrenal glands specifically, along with the sciatic nerve and hips joints.

https://www.powerofpositivity.com/this-is-what-happens-when-you-touch-these-points-on-your-feet/

If you would like any more information on reflexology, it’s benefits and where to receive the non-invasive treatment, then I have put a helpful link below.

https://www.aor.org.uk/home/what-is-reflexology

Chiropractic –

My most recent discovery has been visiting a chiropractic clinic. I mainly go for my back and neck, as I have scoliosis (curvature of the spine). I was born with it, and it has mostly settled now; I used to have a lot of problems when I was having growth spurts through my teenage years. More recently not being very mobile (using a crutch puts a lot of strain on my shoulders and neck) and having episodes of functional dystonia and non-epileptic seizures has really irritated my spine. It causes me tremendous pain, and my GP just had me on a cocktail of pain killers which were just about managing to dull the pain my back was causing me. Fortunately I have a clinic locally, so after no luck with the GP and at the end of my tether with the pain, I decided to book myself in. After all, what harm could it do?

My initial consultation was lengthy as I have quite an extensive medical history. The chiropractic doctor listened to everything intently and made notes throughout. She had never heard of FND, but she was very interested in the physical impact of my neurological condition. She identified the areas that are under the most strain, and we put together a treatment plan. I have been going for about 6 months now, initially every week, and now every month. Honestly, my back has never been this good!

The process of realigning and releasing pressure in your spine and certain points throughout the body might put some people off as it does look painful; but for me it gave the greatest amount of relief. After having a nasty seizure last week and my legs not behaving, my back has held up really well. And I cannot wait for my appointment tomorrow!

To start with my body rebelled quite quickly, which was infuriating and sometimes uncomfortable, but now I don’t know why I didn’t try this sooner. I’m not on a cocktail of naproxen, diazepam and c0-codomol now, and haven’t even had to take paracetamol for the mild back ache I get when I’m due another appointment; I can remedy it with heat packs. Honestly it’s absolutely incredible. Below I will link the NHS page of chiropractic, along with a link to the British Chiropractic Association website if you would like more information or to find a chiropractic near you. I go to a private clinic myself, as I kind of took things into my own hands; but I do believe that you can be referred on the NHS.

https://www.nhs.uk/conditions/chiropractic/

Chiropractic Care

In the future I would like to try some more alternative/complementary therapies such as hypnosis and acupuncture. Surely it’s worth being open minded about the sorts of things that can help our bodies… it’s paid off for me so far. What therapies have you tried or do you want to try?

Speak to you soon.

Fellow FND Sufferer –

Yet another quick post! Just wanted to share the Instagram of a fellow FND sufferer.

https://www.instagram.com/functionalbethanie/

I went to the same school as Bethanie back in the day, and we also went to the same dance school. Only recently found out that she also suffers with NEAD. It’s been so strange but so amazing to catch up with her and hear her story. She now has an Instagram page as she wants to promote awareness for FND and get her story out there. If you’re following me on Instagram, you’ll definitely want to give @functionalbethanie a follow!

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.