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Major Apologies

Good morning, Im going to start todays post off with….

IM REALLY REALLY REALLY SORRY I HAVE NEGLECTED YOU ALL.!!!

With that said I shall proceed; I really am sorry I have not posted in a while folks, my life has been a bit crazy recently health wise and just general life matters, but Im here and will try to post atleast once a week from now on.

So with all the nice weather we have been having recently down here on the South Coast UK what have we all been up too? …

My body has been coping better than I thought it would to be honest, ive had the odd wobble here and there but its been ok.

So whats new!

– My meds have been changed (again) im now in Oramorph, I was told that I have been on various meds and they hope this will work as they unsure what can control the pain anymore. ( so thats great 25 and on Morphine go me ! *she says in a a sarcastic tone*)

Life with FND is fab….Honest…haha.

Im currently sat on a bus on my way to Physio. Oh yeah that happened….was referred to your normal physio they said they couldnt do much because its a neurological condition, they reffered me back to docs to get neuro physio, neurophysio then declined me without even seeing me so now im back to square 1.

Wish me luck 🍀🍀🍀

Im really not a fan of buses, travel sickness is currently at a high level.

Going to have to end this here, the bucket is calling me!!!

Am I going to make it without spewing all over this bus !!!!

Ahhhhhhh

Peace Out !!!

Ciao, Adios, Bon Voyage

x

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Easter Weekend

I love Easter, its just a great time – not just because of the huge amount chocolate I consume (actually to be honest I don’t really eat a lot of chocolate, tends to last me a while). Its just a great time, the birds twittering away outside and everyone just seems to be in Happy. (I literally just looked up out the window whilst writing this and a swarm of Seagulls just flew by….Oh I do love to be beside the seaside, oh I do love to be beside the sea.) Sorry folks got a bit carried away there.

This year I decided to give my Fiance a Egg Hunt around the house, (not huge eggs just the little mini dairy milk eggs). Whist she was in the shower I decided to hide them, I think to be honest I had more fun hiding them than I would racing around like a headless chicken locating eggs. I told her when she got out of the shower that she had a challenge…(I find this a great tactic to getting normal things done…converted it to a challenge…try it….it works ).

She found the eggs dotted around the place took her roughly 10 minutes (gave her something to do and me and my Nan a bit of entertainment). I find its the small things in life that make you smile, making someones day by just a small gesture makes all the difference.

Below I have a few things just for you to make someones day:

1: Simple … just give a smile to at least 3 people today (you never know you might get a cheeky one back)

2: Buy a bunch of flowers (don’t have to be expensive) walk down the street and hand them to someone…anyone…and tell them “some beautiful flowers for a beautiful person” (or something along them lines….and watch their face light up)

3: Another nice a simple one….simply open a door for someone…..

4: Leave a quid in the vending machine…make someones day….free sweets or crisps are always a winner.

There’s just a few little small ideas for you just to make someones day. Everyone can do with a pick me up and you could just be that person to give a fellow being a pick me up.

 

Peace Out !

Ciao, Adios, Bon Voyage

xx

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when the going gets tough

Living with a chronic illness that isn’t always visible can be tough; however I just want you all to know that as hard as it is stay in there, you can get through the rough patches and you will come out the other end smiling.

I suffer with FND this stands for Functional Neurological Disorder….for those of you who have been following my blog (I know its been a bit come and go….I do apologize), I wrote a piece at the beginning about FND and how it affects my life ( wow sounds like a title for a book…stay tuned….you never know)

For those of you who are reading this right now and thinking what on earth is this barmy woman talking a out….then read the next brief paragraph, I’ll try to bring you up to date.

So Functional Neurological Disorder is basically a problem with the functioning of the nervous system not a structural problem…its more that the brain does not send and receive messages properly…so let’s say in Laymens Terms “The hardware works … but the software doesn’t “. So people with FND can suffer from a varied …. menu let’s say, of symtoms. For example…

  • Functional tremors
  • temporary paralysis
  • chronic fatigue
  • chronic pain and complex regional pain.
  • non epileptic seizures (NEAD)
  • Sensory problems
  • Sleep disorders
  • Problems with speech and language

honestly the list goes on…but I won’t bore you….Hopefully your a bit up to speed.

So I’ll get to my story now.

This week has been a major crazy one. My body has been up and down…one minute I’m walking next minute I’m not….one minute I can eat and next minute….wait for it….your never going to guess….I CAN’T. This bit is not cool, especially if you have a massive Toberlorone bar starring at you in the face. (honestly my body tortures me haha )

Chronic illnesses do suck, and if your reading this and can relate….my arms really do reach out to you, give you and lift up and help you carry on.

When things get tough, and you feel alone, you know people always say “im always here for you, just give me a call” but deep down you know they don’t really understand what is wrong….then your not alone. Just understand that your never alone because the most important person is with you constantly, that most important person understands everything you are going through, and that most important person can pick you up and encourage you to carry on…..that most important person is…YOURSELF!!!

You know yourself how much pain your in, you know yourself that at times it gets rough, so next time your feeling low…i know it sounds crazy but here’s what you do….in this order…

  1. take a look in the mirror
  2. tell yourself you are the most important person in your world.
  3. tell yourself you can do this
  4. tell yourself what other people think of you/judge you is not important because your the one who truly knows what’s happening.
  5. finally still looking in the mirror tell yourself you can do this l, you can get through today, tell yourself everything is as perfect as can be. Then belt out a loud WOOHOO.

See mental huh? but give it ago….boost your selfesteem then anything is possible ladies and gents.

peace out !

Ciao, Adios,Bon voyage

xx

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Cluckin Crazy

Recently I have been applying for various jobs, the one thing I hate is the feedback or should I say the lack of feedback.

These employers I understand have a lot on of applicants, (don’t know about you but they could atleast send a blanket message). Wow I’ve gone straight into a rant today, sorry folks.

On a good note I have received 3 interviews out of the 15000 jobs I’ve applied for…bit of an exaggeration.. ..cant be far off though.

I’m currently sat on a high stall at the window of KFC looking out at the car park in my local town. (just setting the scene for you). I’m here for an interview funny enough, first impressions; well the staff seem friendly and the bonus of this interview is a free Pepsi, (hey every little helps…wait…no that’s asda. )

What Is amazing me today is the fact that if I was late today even by 1 minute I’m sure there would be a cross tick in the “good at time keeping” sector of the job criteria….however it’s perfectly acceptable for me to be sat here for 30 minutes…bearing in mind 20 minutes ago I should have had my interview…..! So my main guess is if I have shit time keeping skills I’m going to fit in at this establishment. 🙂

Id like to give them a satisfactory reason … but unfortunately no can do I’m afraid KFC. I really hope they don’t read this before they make a decision on my capability of this job, plan… don’t post until after…! (I won’t I will forget and post it )

WOW just overheard them say to a customer they have run out of Chicken….back up …. rewind….its KFC….whats the main ingredient of KFC…. CHICKEN….

So I’m presuming the Manager is out at the local farm chasing chicken’s….. (picture it…in your HEAD!…I AM )

Ok folks I’m going to leave this here before I get too carried away on the chicken saga.

Be safe….

Peace out!

Ciao, Adios, Bon Voyage.

x

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Apologies Fellow Followed

Hello all. Long time no post; sorry all it’s been a very manic festive season.

So in a nutshell Christmas day FND decides to make an appearance for the majority of the day, resulting in me falling in out of sleep on the couch until around 5pm when it decided to ease and I could enjoy what left of the day I had with my partner, who had the patience of a saint Christmas day with the way my body was.

The days after that just seem to merge into one, that’s the only thing over the festive period; I can’t be the only one who loses track of what day I’m on when christmas hits our homes.

New year was brilliant, my partner and I had a nice chilled one visiting our friends and Godson. we stayed over, had a wonderful buffet followed by games, made a change chilling for new years.

Good start to 2018 though, I’m waiting on confirmation to start Neurophysio, so hopefully my body will be back on track.

Hope all is well in your lifes.

And if not then keep positive lady’s and gents and remember everything happens for a reason.

Peace

Ciao, Adios, Bon Voyage

xx

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Have a rock

Hello all…im very sorry I haven’t posted in a while it’s just been a manic couple of weeks and do apologise. (Honest I really do)

The title of this one “have a rock”, Now I don’t literally mean go out a get a pet rock, although it would be the most easiest pet to ever have wouldn’t it? …

This time of year tends to be stressful for the majority of people, wether that be because of christmas around the corner or due to the fact that winter is here and it is damn freezing out there. This time of year is when most people health issues tend to play up, If your one of those people then go get yourself a rock if you haven’t one already.

Sometimes life just gets too stressful that our brains literally can’t take it anymore and start to turn to mush… you need to let off steam now and then to prevent mushy brains. So by a rock I mean someone who is there when you need them wether that be a phone call away or you neighbour, just for you to know that someone is there when times get tough is all you need.

Rocks help, they take some of the strain so you can relax ( at least rant together about things).

Go get your rock.

Peace out!

Adios, Ciao, Bon voyage

X

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Interview with Becca Hardcastle

Another interview from a wonderful person who also is an FND fighter.

For those of you who are new here, Just a quick break down (I say quick, hopefully i don’t babble on), I was diagnosed approx a half a year ago with FND (functional neurological disorder) it effects people differently so I thought to interview different FND fighters to show how it effects different people. This is the 3rd interview.

Enjoy……

Where are you from?

Bath
• How old are you?

16
• How long have you had FND for?

20 months

• Do you feel FND restricts you?

In some ways, yes quite a lot, but I try to not let it stop me from doing as much as I want to do

• What helps you control FND?

Pacing myself to try and avoid getting really run down, managing my stress/anxiety levels as much as possible and my ‘survival bag’

• Do you have the right support medically and at home?

Yes, mostly, although I often struggle with wheelchair access at school

• Describe a good day?

Minimal pain, not too much fatigue, able to get around and go out. Generally, just a day where I feel as normal as possible

• Describe a bad day?

A lot of pain, bad fatigue, stuck in bed. Generally, days where I can’t do anything of what I want to do and feel rubbish

• What would you say is your favourite hobby and why?

When I’m able to, playing the guitar and singing, because I find it really relaxing andstress-relieving

• What would you advise people who have just been diagnosed and also to those who just need advice here and there in all walks of life?

If you’re struggling with things, make sure you talk to someone about it and try to get advice from them! And always try to stay positive and find the good things in every situation. For FND, pacing is key, so structure your time well, leaving time to rest. Most importantly – listen to your body!!

So there you have it. FND from another angle, not every fighter is the same, nor do we all have the same symptoms. FND is a tricky one (Google it if you don’t know what it is ). The word needs spreading about FND let’s do this. !!!

Thank you Becca for answering the above questions, just to put it out nobody is forced to answer the questions (don’t worry I’m not that mean haha).

Peace out!

Adios, Ciao, Bon Voyage.

Xx

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New trainers 

I dont know about others but I go through so many trainers it is unbelievable. I used to as a kid to be fair, my parents were always buying me new school shoes and every time they would say “make sure you look after these, we’re not going to buy you anymore”. I never understood that statement, like seriously are you going to let me walk around for the rest of my childhood looking like a orphan from Annie, infact i think they even had shoes so not really a good comparison. 

Since being diagnosed with FND there is a good medical reason why my shoes or should I say my right shoe gets completley mullered. I first was diagnosed with drop foot so since then I have a orthotic brace that I insert into my right shoe so my foot actually picks up off the floor rather then being way behind me, so scrapping the front of my shoes is no longer the problem, its the brace itself, cuts into my shoes sole or even the side. Cheap shoes like your £10 pair from shoe zone or even Primarni last abouy a month or two, so I have to go for the named brands such as Nike, Vans or Addidas. I dont mind of course but my partners bank account isnt too fond on this idea. 

I recently bought a pair of Addidas Superstar and honestly they are so comfy, but I have to resit wearing them constantly before they follow the other pair to garbage world. 

So I guess what Im trying to say is since being diagnosed my life has become that tad bit more expensive. 

Peace out !!!

Ciao, Adios, Bon Voyage 

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Sun sun sun 

SUN. Makes you happy right? (Well it makes me happy anyway). Sometimes though it can be that tad bit too hot. 

Welcome to Spain, where my partner and I are working for 6 months this year. So far so good, and I must admit that my FND has touch wood…been not too bad. The odd occassion of a major attack has occured once or twice which is a bonus. ( i say bonus id rather none haha ) 
We are now in July and the heat is just crazy…no wind as we are in the side of a mountain. (Yeah i dont jump to walking up that everyday) 

Clients have to be honest been a pain, but nothing we cant handle. I may have a bit of an FND attack but its all good. 

2 months to go and then back to sunny England. Actually I am looking forward to getting back and seeing the family, specially the dogs. 

Best be off clients to please

Peace out !

Adios, Ciao, Bon Voyage. 

Xx 

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Bad things happen for good reasons 

So the other evening whilst my partner went to the toilet im chilling in our tent as you do when i can feel my legs infact my body pumping. ( strangest feeling…damn you FND), however I have never experienced what I am about to tell you before. 

I knew my body was going into some sort of spasm but to be honest wasnt quite sure how. I tried to get the bed to get my phone to call my other half, (i didnt quite make it). I fell to the floor and my body just started to uncontrolably shake, lucky Dee (my other half) walked in just as I fell. ( safe to say I scared her ). 

My body wouldnt stop shaking, apparently my memory was shot I didnt even know my Mums name or what Country I was in. ( looking back on it scares me) .

It calmed down eventually after Dee got me onto the bed. I was hot, then I was cold…vice versa. Then i was Sick. (Thank you…not) being sick scares me, I hate it with a passion ( although thinking about it im sure there are no fans of emptying whats in your stomach … the way it went down!). 

I drifted in and out of sleep for about 10minutes, then all of a sudden, I could feel the air on my right foot. ( this is the first in 2 and a half years). I got dee to touch my foot to double check. To my suprise there was no pain, I could feel everything. I was laughing then crying…spent most of that evening crying.

#amazingfeeling 

So there is hope out there after all. 

Well….

I had the feeling for about 24hrs then …. had a nap and woke up and it had gone again. 

I am happy I got to feel grass, water, temperature and my shoes. 

Everything happens for a reason people. ! 

(Moody face haha but im happy honest)

 (I can feel the water…woo hoo) 

Peace out !!!

Ciao, Bon Voyage, Adios

Xx