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!

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!