LETS TALK NEAD !

I often talk about FND and how it affects me but one thing I don’t really talk about is NEAD; I have been told that the two tend to go hand in hand.

I was diagnosed with NEAD approximately a 2 years after being diagnosed with FND. I started having these weird attacks as to say, my body would start shaking uncontrollably and would look like an epileptic attack (pretty damn scary if you ask me). I just put it down to being part of FND and speaking to other FND warriors I found that I wasn’t alone, which in a way is kind of a relief.

The only thing that scares me the most with NEAD is other people, quite rightly so people will panic because to others it looks exactly like a epileptic fit so with that in find, when I meet new people I give them a bit of a warning of what can happen when it comes to FND, NEAD and me and tell them its ok no need to panic. I find one of the best things is to ignore what is happening, don’t pay it attention because it’s like a naughty child, once you pay it the attention it will carry on for a while (haha good theory right).

I have only had a “seizure” last about 3mins MAX ! (touch wood), however a couple of weeks ago was the first time I had 5 in one day (scary ill admit) but they were only lasting any where from 30seconds to 2mins (few).

I think NEAD is one of those hard ones for people to get around, I was told it wasn’t effecting my brain and an ambulance doesn’t need to be called, (unless of course it last 5minutes or more). Friend’s and Family now know what to do If it happens in front of them which is handy, so if you have NEAD, FND or any other condition that effects you I can honestly say to help you and to help you feel a lot more at ease, teach those around you about how your condition effects you, I remember when I was first diagnosed with FND by the neurologist I gave my GP a leaflet on how it effects me also my dentist (I must admit they were took back at first but then was very grateful as they had never heard of FND).

Do you have NEAD? If so let me know how it effects you as we are all different 🙂

P.S 3 more days until Christmas ho ho ho

Peace Out !

Ciao, Adios, Bon Voyage

xxx

WHAT A YEAR !

Firstly I’d like to apologise as I have been absent from this blog for quite some time now, various reasons really, health, life in general and main thing is MIND BLANK ! Not knowing what to write about, what to talk to you guys about, but here I am and today I am just going to update you on all things FND with me I guess.

Hope you have all had a fantastic year, well as much as you could (minus the whole COVID Situation) who would have thought COVID would still be around as much as it is a now there is a new variant (which by the way looks like an anagram for NO CRIMBO…..just saying…..hmmm…..). I have now been double jabbed (whoop whoop go me) My first COVID vaccine I felt absolutely awful; in and out of bed for a week and a half, felt super weak and tired which in turn effected my FND so that was fun. For those of you who have FND or any other health conditions, did you find the COVID jab affected your condition too?

All things FND are going ok with me at the moment, stress is still a major factor but we can’t go through life without any stress can we now ! …… Ticks have been bad over the last couple of months, they tend to come in episodes, not saying words really thank goodness, its just noises so that’s always entertaining……(but it’s so draining ! and painful ). Still on the meds I have been on for the past 3 years, nothing more really they can do as I have tried CBT therapy had physio therapy and neurophysio therapy but I keep plodding along as well we have to don’t we.

Hope all is ok with you guys. !

let me know if there’s a specific subject you want me to cover in my next post.

For Now ….

Ciao, Adios, Bon Voyage

xx

7 day trial of 2021 DONE ✅

Thats the first week of 2021 over…how did you guys do ? Given the opportunity how would you rate it so far? (I’m undecided)

New Year is a funny thing; we all countdown to bring the New Year in not having a clue what lies ahead of us and what the year will have to hold. For us here in the UK it has given us another National Lockdown!!! (I suppose its better late the never). I don’t know about you but I kind of feel this is now the new “norm”, walking out the house making sure you have your mask, getting to the shop and realising you actually don’t have your mask.

Who knows what 2021 will throw at us however I’m pretty sure we can get through it, just keep smiling and the world will hopefully smile back at you.

So what are my plans for 2021?

To be honest I don’t really know, I’m not one for writting new years resolutions because….well…I break them all the time. I am one for taking life as it comes though, and knowing that everything happens for a reason even though we may not know why yet.

I’d like to say my biggest aim for this year is to have my FND fully controlled, I’d like to be able to watch my bestfriend and wife to be walk down the aisle in front of all our friends and family as we originally planned for back in summer 2020. We have big plans for our garden this year, and of course the main thing I’d love for this year is for COVID to pipe the f*** down !!!!

If you have just joined me this year reading my posts then hello and welcome, if you have been with me from the start and are still here now then I thank you for your patience.

Peace Out!

Ciao, Adios, Bon Voyage

Xx

Finally got the letter

So a while ago I re applied for PIP….a couple of days ago I finally got a text through to say a telephone appointment has been booked due to COVID they can’t do face to face which I fully understand. You would honestly think it would be a relief doing it all over the telephone but I thought id share with you exactly how a simple text followed by a letter actually effects my FND.

After receiving the text I had mixed emotions, like dont get me wrong im thrilled I have finally received the appointment but my body instantly could feel the stress, my legs slowly started to shut down, weakness started 5 minutes after reading the message, tremors appeared and slurred speech and stuttering presented itself. When this happens I honestly go into shut down each symptoms i get appearing one after the other until I cant function at all. For those of you wondering why? Or thinking its just a text, yes I’m fully aware of the situation but my brain is not, my brain does not know how to take that information so it goes into meltdown. Once my body slowly starts coming back to normal a simple task like standing up becomes impossible without aid, asking for a drink comes out backwards because my words are just so jumbled up.

4 days later and I have just recieved the official letter through the post and guess what we are now back to square one, what we were going to do today has now had to be put on hold, my legs are painful it feels like my bones are being crushed so I thought I’d quickly get this down on here before I shut down and can’t remember what planet I’m on. Honestly guys FND can be a pain (literally) but I suppose all of this will be worth it in the end (well we like to think so).

For anyone contemplating whether to attempt to go for PIP or not then I would say do it, it is worth it in the end, as much as the stress leading up to it and even filling out the forms it because lets face it we don’t always think we are “bad enough” to go for it, its not until I first filled out the forms that I realised how bad my condition is and how it effects me on a daily basis.

Peace out!!!

Ciao, adios, bon voyage

Xx

(Stay safe)

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

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:

• 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 like 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