Behind the laughs

Good evening you lovely lot.

For those of you who have been following my blog will know by now that the majority of the time I make light of every situation I encounter, this time I thought Id be a tad more serious when it comes to talking FND ….. (just this once maybe haha).

This post is going to be about how FND really does affect me, so grab your popcorn and read on !!!

Every day is a new day and when it comes to FND, today could be better than tomorrow or tomorrow could be worse than today, I just never know if I am going to have a bad day or a good day. I try not to think about the pain I am in each day and just plod along but some days are unbearable and no amount of ormorph is going to take it away. The only way I can describe the type of pain I get is that it is a though my bones are being slowly crushed or as though my body is connected up to an electric circuit and there are many faults in the circuit board.

I get frustrated with the way one day I can walk and then the next day I’m on crutches. There are days where I am just stuck in bed because I really am having a bad day but need to be on the same floor as the toilet. FND does suck but because of my sheer positiveness to everything, I paddle through it and with the help of others I get that extra little push.

Before FND I was very active and could walk miles without having to worry whether I would be able to get back home or not, but most of all I was independent. I would go out by myself, I would spend hours in the kitchen baking, I could get into a pool on my own, and simple things I could bath and shower by myself. Some of you may think its ok she has her good days where she can be “normal” again its not that hard, well I’m just going to shut you down and tell you no it is not that simple. FND feels like your being stripped of your independence and everything you knew before soon becomes a distant memory that will eventually fade because well, FND comes with the added symptom of memory failure, If I could do one thing again independently that would be to have a shower or a bath without having to have someone close by, home alone I guess you could say. Why can’t I do that now your thinking, even on a good day? here comes the next symptom of FND…seizures that happen for no apparent reason they are non epileptic but mimic an epileptic seizure very well. These at times come with no warning so showering and bathing alone is a no go zone. Moving onto cooking that is now supervised because any minute my temporary paralysis could kick in and my tremors also,  I hope by now your getting the gist of this independence lark that is now not in operation.

Everyday is my favourite day whether its a “good” day or a “bad” day; the reason for this is that its another day I am telling FND that it is not taking over me and that I am me not FND. Despite the amount of pain I am in each and every single day I know one day more and more people will have heard about FND so more and more people will understand, so with understanding comes acceptance and then voila your no longer labeled as a liar, a hypochondriac, attention seeker… the list goes on.

I have never been the type to rely on others but this is something I have had to get used to because when your lying there unable to move but need to get to the toilet, relying on someone else to help you is your only option. My partner at times sticks me on her back and takes me up the stairs to the toilet or to bed whatever is needed, when my arms are not working she feeds me, she gets me dressed, washes me the list is endless, this girl deserves a medal. She works full time and does shift work so how she manages it I don’t know, she has the support of her team at work who from what I here are remarkable and I will forever be grateful that she has them to escape home life but also who understand what she is also going through because yes I have the condition but she lives it too.

The majority of the time simple activities like visiting family and friends is a hard task, I know what your thinking just get on a bus or in a taxi turn up and your done, if only it was that easy. FND can be unpredictable as I have said before one minute I can be walking fine the next I am on the floor. I remember one time I was on a bus and I was due to get off and I couldn’t due to not being able to move my legs, so there I am going round the houses until I am finally back at my stop again. I have had countless encounters on public transport where they are not “disabled” friendly even though they have to be this then causes stress which I simply can not handle. Id love to be able to avoid stress forever but we all know this is not possible but trying to minimize stress we can do and that is what I do. As lovely as family gatherings are we all have that one family member that just instantly stresses you out just by being around them simple solution is to stay away from them but at a family get together this can prove to be difficult. I have never been great with confrontation and now I am even worse I simply fall to floor and have a moment inspecting the floor until the situation blows over. If people want to see me they now just come to me because not only is it easier for me to cope with in my own environment at least they know if I was to have an episode I have all the means here to be able to cope with it.

Imagine yourself for a moment sat at the dinner table eating your favourite meal of all time, then all of a sudden you are unable to swallow. This is one of the things about FND that frustrates me the most along with my stutter that I have adopted. I remember being sat at the table one Christmas (I love Christmas dinner) and I was unable to swallow half way through my dinner. It randomly happens, I can go a couple of days with being able to swallow then bam its like the world is saying no thank you your not eating this delicious meal that is in front of you.

Medication wise I have stabled (eventually) taking pregablin and oramorph on a daily basis much better than the 12 tablets a day I was taking before to try and control the pain. Do I get side effects? Of course I do, oramorph makes me itch from head to toe gives me one hell of a banging headache but it is the only thing that brings the pain down to a more comfortable level. Pregablin controls the muscle spasms and the nerves in my body that feel like they are arguing with each other. Does it all make me tired? Of course it does, but am I stable? Yes eventually after a couple of years of being shoved from pillar to post I am finally getting the right medical treatment. I have had numerous amounts of physio sessions that simply were not doing the trick, the one I needed was Neuro Physio who turned me away as I was “not bad enough”, but now a year later after being referred originally, I am currently receiving Neuro Physio Rehab on a weekly basis. I am under a Neuro psychiatrist, I am waiting on the possibility of Cognitive Behavioral Therapy, I’m in the process of being referred to the pain clinic (yeah I have a busy schedule).

Some days simply hugging me is too painful for me to cope with, my head at times is too heavy for me to hold up but am I happy? Yeah of course I am. Is FND frustrating? Hell yes. When I think about the pain I get day in and day out I amaze myself at how I handle it. I recently saw a Neuro Psychiatrist who was surprised that I have not fallen into depression and that I am still smiling and happy all through this process we call life, and for me I am a proud of myself that I have not fallen into depression because It would be very easy to do so. I no longer work not through choice but because I am unreliable and I get that. Depression runs in my family and I am so happy that I have steered away from that and I don’t think I could have done it without the people who have been there for me from day 1 since I fell down those stairs (not from when I was diagnosed because there was a massive road ahead before I go a diagnoses).

When I think back to when I fell down those stairs 3 years ago was I scared? yes but I always fell over and thought this will be alright until I started to go in and out of consciousness. It was when I was discharged with just bruising and the days and weeks to follow just seemed to be a whirlwind with every one and their dog including professionals and family telling me that is was all in my head, that I’m just attention seeking and that I need to get out of the wheelchair and off the crutches because they thought it was not necessary. When I think back to that moment it makes me angry, upset and let down by those that I love and care for. Would I have ever told them that it was all in there head? No I would have been phoning doctors etc and telling them that they were wrong. When I was finally diagnosed with FND my Nan accompanied me to my appointment (my partner was at work and unfortunately couldn’t get the time off otherwise she would have been there) we were both relieved to the point my Nan had tears in her eyes because she had been there since the beginning and she knew that there was more to it. Did I get an apology from those who disbelieved me ? No ….. Do I want an apology? No because I am happy with those who I have around me now who support me every step of the way. 

So there you have it just a little insight into how FND affects me on a day to day basis and a brief bit about the journey it has taken to get to where I am now.

All I can say is whatever you are going through be that FND or anything else think positive, as hard as it is and on days where you just want to curl up in a ball and block the world away. Being positive really is the key to life.

 

Want to know more about FND or support and amazing charity called FNDAction ? Click the link below.

 

http://www.fndaction.org

 

Peace out !

Ciao, Adios, Bon Voyage

x

 

 

The Land of Magic !!!

Hey fellow FND Warriors and those who read my blog, thank you for continuing the be patient with my post timings I am rubbish (I do apologise).

So whats been happening? Have I fallen off the face of the Earth?

Q1: A lot

Q2: Nope i’m still here just had a detour haha

A lot has been happening over the past month, my partner and I took a small break to Disneyland Paris (nothing major….its only Disney …..SAID NO ONE EVER). DISNEYLAND was FANTASTIC !!!

We went to Disneyland for 2nights 3 days and spent the whole time and I mean the whole time in the Park, amazing experience and hoping to go back again Christmas time. For those who love Marvel they are currently building a Marvel themed hotel ….. #awesome #marvel #cantwait # timetostartsaving !!! We got to meet the Mouse himself Mickey, this was an incredible experience along with Minnie, Donald and not to mention Mary Poppins (for those of you who know me or have been following my blog then you would have probably gathered by now that I am a HUGE Mary Poppins Fan)

YES we qued for Character meet and greets and got there autographs (cool kids we are)

For those of you who haven’t been to Disneyland then 100% you NEED to go….its not even a want to go its defo a NEED to go.

To be honest its not as expensive as we were expecting; a few people said to us it is really expensive, don’t buy anything there. Well let me just say this, it is what you would expect Disney to be and France to be fair. My partner and I both lived and worked in France for a couple of season and France can be expensive; so when we arrived in Disney we was expecting to pay 8 Euro for a couple of Cokes but when it comes to the shops then It is like the Disneystore.

 

So yeah that happened !!!

It was well needed for the two of us just to spend quality time together, just to get away from all the hussle and bussle of daily life and emerge ourselves into the land of magic, where dreams really do come true.

Each day was very tiring up at the crack of dawn to get to the park for when it opened and pretty much power through until the evening to grab some food and then back to the park for the evening antics. Worth the aches and pains, I must admit my body did pay for it at the end of each day aching head to toe, struggling to walk back to the hotel that seemed miles away, just about making into to crash on the bed, but other than that my FND symptoms where bearable just ignoring them because well I was in the land of magic anything can happen right?

Long story cut short …..

GET YOURSELF TO DISNEYLAND PARIS !!!

 

Peace Out !

 

Ciao, Adios, Bon Voyage.

x

 

 

 

 

The Big Move

My partner and I have recently moved into our own place (well rented but you get my drift), because of the travelling/working abroad we thought it was pointless to rent a place for 6 months each time not to mention the ball-ache of moving constantly; but the time has now come for us to become “proper” adults.

We have been here a month and well what can I say, the day we got the keys to the house we were pretty much running on empty; why you ask? Well … We went to the midnight viewing of Avengers Endgame (previously booked before we even knew we were moving haha) for obvious reasons there was no way we was cancelling the film of the year so we went and payed for it the next day.

None of the family knew about the move other than my Nan and my Partners Sister the surprises were yet to come. First was my father, I pre organised meeting him in the town (oh yeah we moved literally in our nearest town centre, not that you’d think it as its pretty damn quiet). I casually dropped into conversation that I needed to pop to my friends who lives round the corner, little did he know it was our house. His face was a picture and sure enough he was soon running around the house like a little kid looking at the place with all the ideas in the world of what we could do. Next up was my Mum and her Partner, (this was a gooden) I told them I had something to tell them and to meet me and Ill get them a cuppa. My Mother looked deeply concerned about the whole thing but as we walked up the road towards the pub (oh yeah we live two doors down from the pub ….. #bonus) I pulled my keys from my pocket and opened the door and said oh come in here for a cuppa instead. Lastly we surprised the in-laws, this was a banger of a suprise. We planned the week before to meet them outside the pub two doors down to exchange Easter gifts so that was one way to get them outside, just as they was walking up the road towards our door we opened the door and said fancy a drink in here, safe to say they did look confused and then the penny dropped and they too were over the moon for us.

Its been a slow process moving everything over and there is more yet to come !!!

Moving stuff over for the past month back and forth has been a long process however once its done its done (pretty obvious haha) then its just sorting through the boxes more than likely flogging bits on. You never know what you need until you move out, we have collected many things leading up to moving out so we didn’t really have to buy anything major. We acquired a sofa bed years ago so that was handy to start, along with cutlery, pots and pans, glasses and mugs. The house doesn’t have to have any major decoration so that’s a bonus, at least we can take things in our stride. (no need to stress).

I just have one issue !!!

I fear I am addicted even more to Pinterest (didn’t think it was possible) which in turn I become addicted to all the free sites and buy and sells on Facebook for possible upcycle projects.

I really can’t help it, I have however found some amazing little projects on there that I just can’t wait to start.

Our house is perfect for us two and that is the main thing.

Moving out even though parts of it was and still is a little stressful my FND daily flare ups have been lower so that has to be a BONUS.

Peace Out

 

Ciao, Adios, Bon Voyage

 

XX

S is for Stress

Some days are harder than others; this is with everyone not just those who have chronic illnesses. Life itself can be so stressful at times that your body just says no, as humans we forget about ourselves, we forget about taking time out of our daily routines and this crazy thing called life, we forget to have “me time” even if  “me time” is sitting down in front of the TV with your feet up, watching the latest episode of Peppa Pig because you watch it with your children and when it comes to you watching the TV that the channel is still on and you just can’t be bothered to move to change the channel. Taking time out is one of the most important activities you can do, life’s stresses can be forgotten about for, 1 hr or two for you to be able to re connect with yourself.

Those with FND need to do this more than the regular folk and I will be totally honest with you I struggle with this more than I let on to others, more than I even probably realise myself. I have always struggled with my own company since as long as I can remember,  I get bored and talk to myself (not a bad thing, you tend to get the correct answers that way haha). The major issue I have encountered with FND is that stress is a huge factor for me personally (may not be for others), at the best of times it is hard to stay out of stressful situations; nobody enjoys stress like come on what sort of planet have you got to be on to enjoy stress (sorry to those out there if you really do enjoy stress, you crack on, whatever floats your boat I suppose) .

You never know when a “Stressful” situation may occur because pretty much like FND stress can be so unpredictable. Who’s to say walking round the block is going to be stressful it might be a breeze, then again you might get round the corner and there is half the pavement missing forcing you to take a bit of a detour; that really isn’t sign posted well and your on a main road that is always jam packed (wow I have a vivid imagination, comes in handy for examples haha). Stress gets us down regardless of FND or no FND, however stress and FND are not best of friends. I have found that the moment I am in a stressful situation my symptoms start ticking themselves off the check list of FND symptoms and tends to create new ones along the way (in the words of Miranda Hart – Such Fun).

So back to stress and FND…it can really take its toll on you, I’m one of those weird ones who don’t really feel that they are getting stressed but clearly my body is telling me otherwise. I get nervous before general check up appointments and bam hello temporary paralysis, I have a bit of a heated discussion with someone…hello suddenly can’t talk Sophie and vice versa, FND can be so frustrating but being frustrated can just make it worse – in other words you cant win, its almost like a tough computer virus lets say a Polymorphic Virus – infact this a fantastic way to describe FND:

A Polymorphic Virus is more capable of altering its signature pattern whenever it replicates thereby rendering it hard to be detected.

or

The Resident Virus it inserts itself in a computer system’s memory. It is hard to identify the virus, and it is equally tough to remove it.

Many people have started colouring (me being one of them) adult colouring books have stormed the UK shops with so many different books to choose from. Colouring is a new coping mechanism for stress that is absolutely brilliant and helps people to re connect with themselves without them realising they are doing exactly that. So if you haven’t tried colouring yet, and find yourself getting stressed on a regular basis then take an 1hr out of your day to colour, see if it works for you.

I think controlling stress is a hard one and if we all learnt to take time to ourselves that stress would be more manageable, well I like to think so lets put it that way.

If you have FND then this is something you really need to concentrate on trying to control as best as you can. Staying out of stressful situation is hard as I have previously said however doing small changes to the way you go about your daily routine could potentially eliminate some of those stresses. Don’t feel like just because you made plans to meet up with the girls/lads and because your having a bad day your letting people down because straight away that feeling is going to turn into a stress, it may only be a minor stress to start with but its one of those stresses that will grow into something bigger (put you first ladies and gentlemen). I know we can’t all avoid family gatherings and if your like me these sort of events can really put strain on you whether your the one hosting or the attendee. Of course you cant avoid your family forever even though your Aunt Meryl is the one who makes you feel ever so uncomfortable like you shouldn’t be there because you have a “made up illness” (there goes my imagination again, however there is always someone in the family who thinks this even though you have been medically diagnosed with FND that your still making it up and it is all in you head just because they have never heard of it and are too ignorant to do there research – Ok it may not be imagination after all….p.s I don’t have a Aunt Meryl….well I’m pretty sure I don’t)

Everyone should be doing more to make time for themselves, (hey we are humans we can be selfish at times) and the best time to be selfish is when your making time for yourself. If your like me and struggle with relaxing then maybe try blogging, sounds weird I know but this is the one thing I have found that makes me feel relaxed, blogging and craft work are the main two. (if you have been following my blog you would have gathered by now that I like to ramble and rambling funny enough is relaxing…. haha) ……

If you have made it this far through this post then I congratulate you and thank you in the same breath, for sticking with it.

If you take anything from this post, please regardless if you have FND …. take more time out for you, read a book, go for a drive; just something that is just you and re connect with yourself.

 

Peace Out.

 

Ciao, Adios, Bon Voyage

x

 

 

Neurophsciatrist

Remember back when I visited the Neurologist in January and he referred me to the Neurophsciatrist? Well that appointment finally came around and what an experience it was. I was very nervous (as you can imagine) I don’t know what it is, I’m guessing its the unknown but every time I have an important meeting lets say or appointment my body just tenses and then BAM hello FND welcome back.

Touch wood recently my FND has been controlled lets say and I was determined this time for an “appointment” to not get in the way, but hey ho FND appeared the night before due to worry.

My Mother accompanied me to my appointment however waited in the waiting area so I went alone (which is ok….maybe a little scary….ok….yeah….it was daunting strolling off down the corridor with some stranger I have said one word to). The corridor seemed long; I was on crutches however it still seemed to take a while to get to the door of the room I was about the spend the next 45 minutes in.

The appointment consisted of a million questions, it was pretty much question after question and not giving your much time to think between them all (exhausting). The questions were very in depth, I suppose they had to be but it was very exhausting….I left there absolutely shattered all I wanted to do was go home and curl up in a ball and sleep. WARNING: IF YOU HAVE AN APPOINTMENT WITH A PSYCHIATRIST TO HELP WITH FND; FND WILL APPEAR STRONGLY AFTERWARDS MAKING YOU FEEL LIKE YOU HAVE JUST RUN A MARATHON. (can’t say I didn’t warn you).

One of the questions I was asked was “how was your birth” – well me being me, I couldn’t help but reply with “I don’t know, I can’t remember” – Don’t think that was the answer she was after.

So yeah that appointment happened, good thing is she referred me to the Neurogym at my local hospital (2nd time lucky), and also told me to give CBT a go (cognitive behavioural therapy).

Has anyone had CBT? if so how was it? and did it work for FND?

Drop me a message !!!

Peace out !!!

Ciao, Adios, Bon Voyage.

 

xx

My Lookiero Box !!!

Good evening all, hope your all doing well and life is treating you well.

I recently have been in a lot of pain FND wise and I came across this website whilst browsing the internet going a tad bit insane from boredom. If your anything like me and love clothes then this is definitely for you; other FND warriors out there do you ever get frustrated some days because you feel you can’t just pop out for a bit of retail therapy? …. I don’t know about you but sometimes even on good days going into various clothing shops just gets a bit too overwhelming whether that be because of the hustle and bustle or just because there is so much to choose from and you just can’t make up your mind.

Lookiero avoids the long ques and the wide choice down to a box delivered to your door by a selected personal shopper. The website is very simple to use, you just need to answer a few questions about what type of styles you like and a bit about yourself; so that your personal shopper can know a bit more about you to choose the right style and colours for you. I linked my instagram account and this definitely payed off when I recieved the outfits through the door.

Yesterday I received my Lookiero box and WOW it is amazing. There were 5 items of clothing in the box all of which I would normally look at in the shops but think “no….they wouldn’t suit me” …… BUT it is very different trying on the clothes in your own home because you can see what you have in your own wardrobe that would go with them. I tried on both outfits and to be honest I fell in love with all 5 items but they are a little bit more expensive than what you would find in the high street shops like Primark etc but the quality and service is definitely worth the price. (especially as a little treat for yourself….come on …. you have to treat yourself once in a while)

So in my box I had 2 shirts one patterned and one navy blue with no sleeves, both perfect for the summer, I had a bright yellow jumper which I absolutely loved but couldn’t bring myself around to paying £49.80 just for the jumper … (this time round at least), a pair of plain blue jeans and my ultimate favourite white, yellow and black checked trousers (honestly they look better than what they sound).

I treated myself out of my birthday money I recently received from the famalam to 3 of the items both shirts and …. yes you guessed it…. the checked trousers.

With lookiero you get the box sent to you so you don’t need to step foot out of the house to the busy shopping malls and you also can send back the items you don’t wish to buy whether that be a couple of items or all of the items your were sent. It is so simple and I fully recommend it to anyone who is not a fan of venturing out to the shops.

If you fancy giving this ago then Ill provide a 10% discount code at the end of this blog along with the link for you all to try it out and give it ago. Even if you don’t buy anything its worth a shot you never know you may find that item of clothing you have been longing to have in your own wardrobe.

For FND warrior out there this is a great way to keep those symptoms low, if your anything like me then stress really aggravates those symptoms so staying clear from those busy shops and ordering one of these mystery boxes just gives a sense of relief I guess. I can’t say this is for everyone but you never know until you try it I guess.

HERE IS THE LINK TO LOOKIERO:  https://lookiero.co.uk

HERE IS THE DISCOUNT CODE: LKSOPHIETYIY

 

 

Whats happened in a Month !!

 

WOW – Its been a month since I last blogged, [I do apologise I’m pretty bad at keeping you all updated]. So in a nut shell here’s what shenanigans have gone on in my life this past month [just in case your interested 🙂 ]

• My meds have changed (again) I’m now on pregablin and still the orapmorph
• I have started to try to go to gym again on “good days” just to try to improve the mental side of things, although I will get that summer bod that I have been craving for the last few years haha. [Hey – I can dream right? ]
• BOOKED OUR WEDDING !!!!!!!! [eeeekkkkk – excited is an understatement]
• Completed an online course at the open university – [eventually]

So YES, we booked or wedding !!! FINALLY. We have found the place and its all booked, now the challenge is just paying for it. I have been engaged to the love of my life for 4 years so its about time we have tied the knot really. Roll on August 2020 !!!!!

Med’s change is going well, at first it was hard as had to be weened off of Gabapentin [I was on 8 a day] as I was slowly coming off I realised how much my body relied on those beauties to control my symptoms each day. I noticed each week as I was taking one tablet away I struggled to cope and more symptoms were showing again mainly seizures and tremors, so its good to know that the tablets were working. It was my choice to switch med’s; I was getting a bit concerned with my memory [ yes I know I’m only 25, but honestly it was poor] I spoke to my neurologist and he agreed that it was worth given it a try to see if it was FND or the med’s. I have now been taken Pregablin for 3 weeks, so far [touch wood] I have not been too bad. The first week was rough as though my body was rejecting the new drug as to say, but we powered on through and now halfway through the 3rd week my symptoms have started to level out again. YAY

THE GYM 🙂 – So a while ago I was refereed to the gym by my physiotherapist, she said it may or may not help with the FND. I found it didn’t help with the FND, however It was mentally helping me to cope better with it. For example: When I experience onset temporary paralysis, most of the time I have to rely on somebody helping me with absolutely everything [talk about dignity flying out of the window] so I spoke to a personal trainer there whom suggested I build up my upper core, but to really benefit from the gym I needed to be going at least 3 times a week. I STRUGGLED [as you an imagine]. There was people running on the machines, lifting weights and I found that I was looking at them thinking, why can I not do this. I powered through my 8 week course at the time [by the skin of my teeth may I add], I needed someone with me at all times [bye bye independence]. I couldn’t go 3 times a week I just about scrapped the 2 day mark but not in a row, I then began to noticed that when I did fall I was able to use my upper body strength to get myself into a more comfortable position. A couple of months down the line I have joined up to the Gym; my partner and I now go together whenever I am capable of doing so, just to build up those core muscles again to try and gain back a little independence again.

Last achievement; this month I passed an online course at the open university [YAY – GO ME]. So back in October last year I signed up online to a free course on Forensic Psychology, I have a major interest in that sort of department and thought why not learn more about it. It was only an 8 week course but I struggled to concentrate due to my condition, and so I completed the 8 week course on Monday just gone. Took me long enough however I feel like I have accomplished something and so it has boosted my confidence. So I highly recommend if your unemployed or have a medical condition that your struggling to get your head around; or you simply just want to learn something new, head over to the Open University website where they have loads of interesting free courses you could get yourself on just to keep that mind going.

 

Enough about me, how has your month been?

Any subjects you would like me to cover? Or you want to raise some awareness about a condition you have and you feel there is not much knowledge out there about it. Drop me a message and you could be included in my next blog post.

Take care all.

 

Peace Out !!!

Ciao, Adios, Bon Voyage

xx

“Lazy” Days, Movie’s & Snack’s

I never used to like lazy days until I was diagnosed with FND. Before FND I used to get bored staying in bed all day watching movie’s and eating snack’s. (I know you probably scowling at this whilst reading thinking WTF how can this girl not like lazy days, movie’s & snack’s) To me staying in bed chilling was not the day I had planned (even if I didn’t have plans, bed days were not on the agenda) my partner used to find it so frustrating, all she wanted was to chill out, cuddle, have an array of snack and watch movies or binge watch series, and I just couldn’t bring myself round to do such activities. I could handle watching a film then as soon as it was done I needed to get on and do something else, my brain never switched off.

However now since FND decided to appear my “Lazy” Days tend to be my bad days, I have no choice but to just chill out a take five. I have got used to it and now I kinda enjoy sitting down watching TV although I still can’t sit and do nothing, I have to sit and colour for example. (My brain is always on the go….so frustrating)

How are you on “lazy days” – Do you find it hard or slip right into it ? (Just intrigued)

All I can suggest to fellow FND warriors out there who are reading this, when you’re in pain take 5, honestly it really does help. I never used to, I used to try to push myself to my limit but really it just made me worse.

Enjoy your “Lazy Days” Guys and Gals 🙂

 

Peace Out !!!

 

Ciao, Adios, Bon Voyage.

Why up so early !

WOW its early 02:01 to be exact; yep as you can guess I am not sleeping right now.

My mind is on over drive, I don’t know about you guys however I’m the type of person who likes to constantly be doing something so I think my brain does not know when to switch off (its worse when your MEANT to be sleeping right). So tonight/this morning my brain is on overdrive thinking about a craft fair I’m going to be attending in November…(yes ladies and gentlemen November, so why on earth is my mind thinking about that now…25th of August god damn it! )

Just before Christmas last year I decided to give it a shot of Hand crafting gifts to sell on trying to start my own working from home business as I have found since stopping travelling and trying to find a “normal” job, that my condition is a major factor with most companies because unfortunately I am unreliable I guess where my condition is so temperamental, so I thought why not just work for yourself Sophie.

I’ve always been a crafty type of girl from a young age I was making this from paper mache and get the paints out etc and from there it just hasn’t stopped, I studied art at school and took is as my GCSE and even though I have traveled etc I still have a craft spark in my body. So I started by making personalised wooden Christmas shapes such as Santa’s, Reindeer’s etc I would personalise them with glitter choice and name etc. These were very popular with Friends and Family (which is who I pretty much sold to, not a problem they are my biggest fans) It generated a bit of an income for me for over the Christmas period which I was happy about.

In the new year I decided to expand my crafting knowledge and create other personalised and bespoke products with ceramic plaques, creating signs from room signs to gaming signs etc. These became popular pretty quickly and so I decided to try to sell to outside of the family and friends zone. I succeeded with this a little bit later on the year with a couple of orders from a few people. I also decided to do wood burned personalised boxes and chopping boards which again I had a few orders (slow but I was happy and still am)

Most recently my partner gave me the best idea yet and that was to make my own wax melts. My partner and I both love wax melts so we thought lets make our own. I have being doing them for around about a month now, I started with candles and since then have progressed and now make soy wax melts in over 20 scents. These have been a popular hit and have had a lot of interest in these and a few sales.

Back to the craft fair sorry guys I have gone off track a bit (hey don’t judge its early in the morning)  As I was saying the craft fair. My Mother In law gave me a call a few weeks ago asking me if I fancied doing a craft fair with her at my local Fort, I told her I would think about it and when I finally got back to her, her reply was ” Oh I already put your name down ” So technically I didn’t have a choice – but I am really excited.

So its now all go on making as many wax melts as I can ( like how many do I make, and how much do I really need to take to a craft fair with me) Its a two day event and I have decided to focus on my wax melt project as they have generated the most interested, Im going to make a few Christmas style and scented ones also as Christmas will only be around the corner by the time the craft fair comes.

So if your in the local area and fancy coming in to see my wax melts then come on in and don’t be afraid to say hey.

Fort Purbrook (Portsmouth UK)

Any one else have a illness that prevents/hinders work?

Do you have your own work from home business?

 

Peace out !

 

Ciao, Adios, Bon Voyage

 

xxx

p.s want to see my handmade stuff, search my page on Facebook @HandmadeBySophie17 like the page and then I can add you to the group as well 🙂

Good Evening Folks

Good evening all !

Its been a rough couple of months, I keep forgetting to update you guys on my life, but I’m here, I’m back and I promise to keep you all updated – at least once a month. !

SORRY AGAIN ! (I know my last post was full of apologies – so sorry )

So whats been happening in the world of Sophie huh.

Since my last post I have had a few Physio sessions – its been ok I suppose, to be honest my physio doesn’t really get the FND part about me, she’s more worried about my back issues (oh yeah that has happened ! the bottom of my back has been a bit of a nonsense). So she has referred me to my local gym, at first I thought WTF !!! I know I have put on a bit of wait but the gym really ! That’s major exercise. Then I thought no Sophie it’s cool you can do this, what can be so bad about the gym other than its full of sweaty bodies.

So I attended the gym they gave me a work out programme and if I’m totally honest I love the gym ! ( I know what your thinking – LOVE is a bit of a major word for the gym – I agree – but its true ). So the gym is going well, someday’s I am struggling to get tothe gym so I just don’t attend purely because its not worth it when your having a shit day FND wise, but other than those days I go to the gym, I take it slow and I have found a difference in my back pain which is a relief. Is there a difference in my FND ? Not really, I have bad days of course and those days I like to call my Netflix and snacks days, my days where I sit in bed or on the sofa if I can make it and I binge on Netflix series (thank god for Netflix aye)

How have you guys been? anything new ?

Peace out !

Ciao, Adios, Bon Voyage

x