Posted in Uncategorized

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 

Posted in Uncategorized

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 

Posted in Uncategorized

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

Posted in Uncategorized

Something out of nothing 

Not posted in a while due to damn internet connections. 

So lets see whats happened. My partner and i have started our 6th season this time in sunny Spain, I say sunny its been raining on and off for the past two days. This season is a bit of a strange one, new campsite and all that jazz. So far the campsite has not really sold itself for work wise but the views and everything are amazing, the campsite is literally in the side of a mountain (luckily we are based at the bottom of the mountain). On a good day (FND wise) its amazing to walk up the campsite and see the views of the area. 

The local area also is bloddy brilliant. I mean check out this sea!
 ( the island ahead is called the medes islands. Apparently the water here is amazing for scuba diving)
Work here is going smooth ( as if) really it is ( honestly is not haha ). FND so far has been pretty kind to me, i think maybe its the help of the good ole Vitamin D. 🙂 

No matter what happens though once a traveller always a traveller regardless of FND. I advise you all to just reach out and go for your goals in life. Even if it takes you a while to get there, the results after will be incredible. 

Sometimes something can come out of nothing. Dont ever give up. 

Peace out !

Ciao, Adios, Bon Voyage 

Xx 

Posted in Uncategorized

Time to pack 

This year will be mine and my partner’s 6th season (i know .. you dont have to say anything). Its crazy how time flies by so quickly. However you would think then when it comes to packing to leave the country for 6 months by now we would have got it down to T ( meaning sussed it out). No…you are are wrong. Packing is still the worst and most stressful part about travelling. 

This season we have decided we are definatly only taking a travellibg rucksack as when we finish out season work we would like to do a bit of travelling to get home (visit various friends we have met through season work). This however is appearing pretty damn stressful. 

The problem is clothes and shoes! It really is. I love my trainers and clothes way to much, i normally tend to take the majority of my clothes and trainers but this year it really cant be done. I dont have as much tshirts as my partner but i do have quite a lot of jeans. 

Not many people can really get their head around why we take the majority of our cothes and shoes, ( i dont want to keep wearing the same to be honest ) but the thing is doing season work its like moving home, you want your home for 6 months to be homely. 

This year though we are determined to do the backpack thing. ( why not YOLO and all that) our first season packing wasnt too bad because we didnt experience what we would miss but we know you need 

  • Tea Bags (cant be dealing with so called “English Tea” you buy abroad) 
  • Coffee

There is a lot more but off the top of my head they are the most important. (To me haha) 

This year the packing well has had many tantrums but we finally have succedded and got everything in

(Not to mention we have decided to take two hand luggage suitcases as well )

Has to be done when you have laptops haha. 

FND was no help this year…incredibly unhelpful. 

STRESS FREE ZONE  is always needed with FND i have discovered and packing is not that.

My advice to anyone travelling or just holidaying, hire somebody to pack your bags for you. 
Peace out !

Ciao, Adios, Bon Voyage 

Xx 

Posted in Uncategorized

“UNDER THE WEATHER”

headache-clipart-7.jpgThere is nothing worse that waking up the morning after have a few alcoholic beve’s. I mean Im sure waking up in the middle of a mountain range with bears circling you would be worse but in this case…no…HANGOVERS.

Im not overly fussed on the term “hangover”, I like to call it “under the weather” or “aftermath” if its really bad, or simply “poorly”.  That way its not obvious to others that its the “drink” thats caused you to feel a little bit “under the weather” you see.

Now I dont know about you but If I have been drinking the next day I seem to wake up pretty damn early. WHY? the birds are not even singing yet so why am I waking and 1hr after my head has recently hit the pillow. NO NEED.

Eating the next morning tends to be a no go for me, and the word GREASE the next day makes my stomach do summersaults. My partner dragged me mcdonalds for breakfast one morning, well we missed the breakfast and onto the lunch menu. The smell of food when it the “aftermath” just make me Vom, I literally want to chunder all over the kids happy meal next to me. It was just an aweful experience (safe to say that has not happened again)

I have tried variouse “hangover cure remedies” they just dont work very well. I suppose the idea is to not drink so much but its not that easy when your having a ball haha 🙂

I have now come to eating when feeling a little “under the weather” but when feeling the “aftermath” that is still a no go for me.

The best thing I find is in the morning get out of bed go and empty that full bladder full of various drinks from the night before, take a couple of paracetamol or Ibprofen (now that works for me) then pop yourself back in to bed for an extra couple of hours kip. Wake up, have a green tea possibly push yourself to some food, Oh salad is a good one, makes you feel pretty damn good from the antics the night bgreek-salad-whole.desktopefore. Yeah I know what your thinking (thats just weird) honest it works, kind of settles the stomach I suppose, I dont know, but it seem to work for me, I guess the water in the salad helps to re hydrate you in turn the alcohol leaves your body and then your buzzing.

Try it. Give it a go. See if it works for you.

Peace out !

Ciao, Adios, Bon Voyage.

xx

Posted in Interviews, Uncategorized

Interview with Amy

Hello all !

I have something to share with you all today. An interview I done with another person who has FND. It was really nice to speak with Amy to see her side of the FND, it really does affect people in different ways and I would like to spread the word about FND and show the world that its a condition that affects everyone in different ways. Amy said to me that she loves to talk (as you will gather haha) which is perfect for the questions I threw at her today. Amy and I have something in common which is always a bonus, her love for travelling is like mine, I really enjoyed interviewing her and I hope you like reading about it as much as I liked it too.

Here we go (get ready its a long one)

Interview:

images

  • Where are you from? I am from Northern England.
  • How old are you? I’m 22 years old.
  • How long have you had FND for? Well this is a bit complicated.. I was officially diagnosed in January, but began having actual FND symptoms in late September 2016 after illnesses which began in January 2016.
  • Do you feel FND restricts you? Well I am currently having neurological physiotherapy and other treatment for FND to try to get as much of ‘Amy’ back; meaning that currently I am not able to do what I used to do. However, this being said, although I have a chronic illness and disability, I don’t let it take over my life, although it affects my life. I try to do as much of what I want to do when I can and if I can. I listen to my body and rest when I need to and if I can’t do something, I don’t get annoyed (too much haha!) by it and just wait until I can or if not, I ask for help or take the help when/if offered by people.
  • What helps you control FND? My medication helps control my FND symptoms such as strange sensations, nerve pain, numbness and drooping face. My neurological physiotherapy exercises have greatly improved my body too, such as my trunk, posture, arms and legs.
  • Do you have the right support medically and at home? Yes! I am incredibly lucky and so grateful I can’t put it into words. My parents are taking me to all my appointments and are supporting my choices and help me so much I can’t even begin to explain!! They also flew out to Finland where I was on exchange and had to leave due to my symptoms. They helped me pack up all my things and flew me back home to get help in the UK. The Finns were helping me but I could no longer attend my appointments, study or do the things I needed to do. We got things moving quickly back home and my GP was very concerned with my symptoms and sent me for urgent scans, tests and referrals. I then saw a great neurologist who sent me for more scans, and ruled out other conditions which have the same /similar symptoms as FND via further tests. I was then referred to a lovely neurological physiotherapist who has helped me enormously with walking, eating, talking, using my arms and legs and my overall self-esteem. (I hadn’t realized I was lacking that much in self-esteem before, but as my symptoms affected my face and how I walked particularly, these symptoms had a knock-on effect on my confidence too, and I learnt ways of overcoming this and developed more body confidence generally.)
  • Describe a good day. Well this will change over time as I was diagnosed in January and am currently undergoing treatment, however currently it means I can shower without a rest, walk a bit, dry my hair, put my make up on, do a few computer bits, write, make a meal and go out to a shop or café.
  • Describe a bad day. Again, this will change over time due to treatment, however, right now it means I will have nauseating pain in my back, numb legs so I walk with a drag, severe burning pain in my legs and hips, burning pain in my face, heavy and painful arms liPicture1.pngke I have broken them, droopy face, unable to smile, reduced walking abilities and severe fatigue.
  • What would you say your favourite hobby is and why? Although I love being at sea, I would say my overall favourite hobby is learning languages as I love to chat haha, to meet people from other countries and cultures and to travel and explore new places.
  • My advice: My advice to people who suspect they have FND is to get help via a diagnosis from a neurologist. To those who have just been diagnosed or people just needing advice generally, I would say that you are NOT ALONE, there are support groups and organisations to help and support you, and to rest when you need to. Resting does not mean you are failing and helps you benefit enormously in the long-run, as doing too much when you are fatigued just makes things worse. This can be hard to accept at first, as you just want to do what you want to do, but you must listen to your body and stop when you get ‘warning signs’ e.g. tired legs or arms. I would say as general advice, don’t worry about other people’s opinions, do what you can when you can if you can and don’t beat yourself up. You can only do your best and if you are doing that then that is just great!

 

So there you have it, thank you again Amy for voulenteering to the interview, it was pleasure to speak to you.

 

Peace out !

Ciao, Adio, Bon Voyage

xx

Posted in funny

Pork Anyone ?

This evening we decided to have the other half of the pork joint my Nan cooked yesterday for Sunday roast. (pulled pork baguettes … YES). I started carving the pork up and I could feel my hands beginning to ache so I thought I best put this knife down before I cause some damage to myself (just in case tremors kick in). My better half takes over and is carving it alot better than I was (lets not say that outloud). Im chatting away and all of a sudden my Nan shouts she’s cut her finger, out the corner of my eye I thought I saw her finger flying up in the air (it wasnt it was a piece of pork coated in blood) and then blood squirting out of her finger. Now I dont mind blood but when it comes to it squirting out of where its meant to stay then that is a no go for me, I cant even have a blood test withoupulled porkt foaming at the mouth (bit of an exageration), I feel sick and well 9/10 I am sick, then light headed. So I look and then quickly look away from the finger situation, grab some kitchen roll and hand it to her to cover it up. Safe to say we was heading for A&E if this blood wasnt going to stop. So without thinking I say I best get some pork sandwiches made up as we shall be at A&E for the evening. (Well the look on my her face was not very good as you can imagine ).

 

Luckily her Dad is an ambulance man so we called him he came round and checked it out, turns out A&E was not needed thankfully, pretty deep cut though. So next time your thinking of having a lovely pork baguette for dinner take a miss and get it pre cut and pulled or you might end up with a trip to A&E.

Pork Anyone ?

 

Peace out !

Ciao, Adios, Bonvoyage

xx

Posted in Interviews

Interview with Jemima

Good evening all.
So today I had the pleasure to interviewMICROPHONE a very kind and caring girl called Jemima Croft whom I met through a facebook page for younger fnd fighters (this is the name of the page). I say I met I havent had the pleasure to actually meet this girl but speaking to her throught chat has been a pleasure in itself. The younger fnd fighters page decided to do a Swapbox, meaning literally what it says on the tin…swap…box. I was paired with Jemima and well I didnt know who she was from adam and well I got talking to her through Facebook and out more about her and well my job was to then go out shopping for a box and some items to go inside to send to her so on a bad day she had something to make her smile. (I am a bad person and havent sent mine yet …. hey its not my fault). I recieved my package on my birthday…it was amazing…and loved it….she also wrote a beautiful letter.

She voulenteered for an interview and I am now happy to share with you all #raiseawarenessforFND.

INTERVIEW:

Where are you from?

Yorkshire

How old are you

19

How long have you had FND for?

I have had FND for 4 and a half years

Do you feel FND restricts you ?

I no longer feel my FND restricts me as its really well managed at the moment. As long as I prepare well in advance, allow myself time to rest, and that everyone is aware that I may have to cancel last minute, usually I can still do all the things I want to. I know my triggers really well now too so can avoid them.

What helps you control FND?

I am on medication that controls the head pains that trigger my seizures that I was having daily so that has helped massively. I also have FND specialised physio that I do everyday, I play wheelchair sports and I horse ride, so the muscles that have weakened due to lack of mobility are now slowly getting stronger. I also use a lot of grounding techniques and pacing.

Do you have the right support medically and at home

I am very lucky that my family have always been incredibly supportive and that has made it so much easier to live with FND. I have struggled with support from medical professionals as I spent 2 and a half years trying to convince them that I wasn’t faking it. They couldn’t find any physical reason for my symptoms on scans and so decided that it wasn’t real. Thankfully, after getting diagnosed it has been better and I now have an FND consultant and an FND neurological physiotherapist.

Describe a good day

a good day for me is minimal pain in my knees (I have this constantly), minimal chronic fatigue, and good concentration levels. On these days I can usually manage a full day of activity with short rests in between.

Describe a bad day

my family call my bad days ‘flu days’ because that’s what its like. I am usually bedbound, in extreme pain, exhausted, and have severe memory loss and concentration problems.

What would you say is your favourite hobby and why?

my favourite hobby is horse riding. I’ve been riding for over 10 years now and am hoping to make a career out of it. It was the first thing I could do independently when I became ill, that I could also do before. They don’t care if I use a wheelchair or if my legs aren’t working properly that day, so long as I treat them right they will look after me in return. They helped me to walk again (with crutches), help with my memory loss issues, and I am so much stronger both physically and mentally.

Last of all….what would you advice people who think they have FND, those who have just been diagnosed and also to those who just need a bit of advice here and there in all walks of life ?

the best advice I can give to newly diagnosed people with FND is, be patient. Its probably the most frustrating thing to hear, but it works. Living with FND, things rarely succeed first time. If you learn to be patient with yourself and with your situation, things will get easier



 

Thank You again Jemima for taking the time to do this.

#fndfightertroupers

 

Peace out!

Ciao, Adios, Bonvoyage

Posted in Fidget Cubes and Spinners

Stop That Fidgeting

I don’t know about you but when I was younger, I was always told to “stop fidgeting”, or “will you stop tapping”. I thought I was just making music whilst tapping on the kitchen side whilst Mum was cooking something tasty for dinner however I do understand now that it must of been pretty frustrating for her, Sorry Mum !

…anyway I was looking through the internet a few weeks ago and came across these fidget cubes and spinners, I also read as to why they were created, which I thought was absolutely brilliant. For those of you who are unaware their intended use was to help people with Depression, Anxiety, ADHD, Autisim and more, it also helps people to focus more and even assist people who are giving up smoking, to be honest the possibilities are endless.

If only there was these things fidget cubeswhen I was younger (my Mum would have been so pleased).

I decided I would try one and whilst looking on my local market I found both the cube and the spinner, I decided to go for the cube because it has all different functions on it (perfect for pen clickers).

A week later these have taken over cities, schools, you name it people have these everywhere. In fact I went into my local city today to see children everywhere spinning them on the finger, so my partner and I decided to get a fidget spinner.

THEY ARE AMAZING !

I really would recommend these folks, they work and even better they help control one of my main symptoms of FND and that is stress and nerves.

I have heard you can do all sorts of tricks with the spinner (not that I am overly good at doing tricks in any sort of form)

Honestly get yours today and it will really help with EVERYTHING !

Just go onto http://www.amazon.co.uk and type in fidget cubes or fidget spinners….there are so many to choose from your spoilt for choice.