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.

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.

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!