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

Buddy The Beagle –

Last week I mentioned that I had taken a leap and done something for myself that would potentially push me to my limits, but ultimately make me feel like I had a purpose, one that FND took away from me some years back.

Buddy on his slip lead, sheltering in the shade from the hot weather last week.

I picked Buddy up on the 22nd of July, and life since has been full of joy, laughter, cuddles, stress, very early mornings and more stress.

He is 10 weeks old now, and he is a little angel. Other than a few accidents here and there, some tantrum wees (as I’ve come to call them), some nibbled limbs and a lot of lost sleep, Buddy is such a good little man.

He’s started to come out of his shell now he’s settled, and loves our two other dogs. They are much bigger than him, though he is growing fast. He tries to play with them despite the fact they can flatten him with one paw and by accident, but it doesn’t stop him.

Buddy is a real people person. He loves company and meeting new people; everyone is an instant friend to him. I can’t wait until he’s had his second vaccination, and the week following that I can take him everywhere I go.

Over these last couple of weeks, I have been walking more without my crutch around the garden; I’ve had the motivation to do it for Buddy, to house train and exercise him. It’s such a small thing, but I feel like I’ve got some of my confidence back. If it wasn’t for my regular chiropractic appointments, my back would be suffering, I’m not going to lie.

So right now I’m snuggled up on the sofa with Buddy, he’s been a bit naughty this afternoon, and he turns into a bit of a diva when he’s tired. I wore him out a little more with some training (he has learned sit, down, wait and this way so far. We are working on leave, very hard seeing as he eats literally anything).

I’m looking forwards to pushing my boundaries and training Buddy. Our other two dogs are adapting slowly, it’s all very new and different for them. We will get there though, just got to take it a day at a time; something FND has made me very familiar with.

Buddy having a photo shoot and being a bit of a poser.

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!

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.