Category Archives: Chronic Illness – FND

I cried.

I’ve sat and cried today. I’m not even completely sure why to be honest. I just feel so vulnerable today. I’ve got so many symptoms and I am scared of being alone today.
I’m scared of something happening whilst I am alone and I’m scared of going out and being near people who don’t understand. They don’t know why I walk with a crutch or that it’s more than just my legs that don’t work.
I’m scared of going out in case I sound stupid because I can’t speak properly, or if I drop everything because I can’t use my hands properly or if I take ages to pick something up because I can’t process what’s in front of me.
My husband has seen me at my worst and he gets it. He knows. He’s fed me, dressed me, washed me. He gets it.
I’m scared of what’s to come in my life and how much of me I can get back. I don’t know how things are going to pan out and what my average battery level might be. I’ve lost so much but hopefully I’ll gain much more.
I don’t want to be negative about it all. I’m really trying to get a hold of things. The more I understand my condition the better equipped I can be on how to deal with it.
I do have my better days, where I am more focused and I feel like I know how to manage it. How to control it if you like.
I just wish I could feel as strong as what people tell me I am. I’m dealing with it yes but am I strong? I’ve no idea.
All I know is I don’t have a choice really.
I just wish I could feel strong in facing people when I’m at my worst with my condition. I wish I could feel confident when going out. Confident in me, my condition and confidence in what or who I might face.
I don’t know what’s to come. However I do know this.
It’s ok to sit and cry, life with FND is not for the faint hearted that’s for sure, however I also know that the next day I will pick myself up and if all I can do that day is feed myself and entertain myself and my tiny human toddler that is Alfie then I will give myself a bloody good pat on the back for a job well done. xxx

Who am I?

Well I’m Emma. What does that mean though?
I am a wife, a daughter, grand-daughter, neice, daughter-in-law, friend, cousin, step daughter, step sister. I am a step mum, an angel Mummy and a rainbow Mummy. I’m a cook, a cleaner, a teacher (so to speak) and a live in first aid person.
I was a befriender to those who’ve lost a baby. I was a friend to some people that I have now lost and some I have found I am loosing. I was a collegue to some I no longer see.

I am and have been a lot of things.
Does anyone find though that along the way and with some major life changes that we sometimes forget who we are? If you haven’t felt like this before then I guess this might seem extreme to you.
The recent trend of the #tenyearchallenge got me thinking after looking back at old photos when doing this challenge myself.

I was never certain on what job I wanted or what style I thought suited me or where I wanted to live or the type of life I wanted to lead when I was younger. I knew I wanted to get married and have my own family and other than that I wasn’t sure on anything else. I knew what I liked and disliked, knew what I enjoyed doing and things like that.
After some major life changes that have been out of my control I will be honest I kind of feel like I have lost my way.

I’m not sure what is coming next in life or where I am going now. I do know this though, at almost 34 years old I am finally starting to have a bit more undertsanding of what I want out of the rest of my life, I know what makes me happy.
I had a very bizzare conversation with William recently about gammon. Please don’t think I have gone mad!!!! Hear me out, I have always had both egg and pineapple with gammon and there’s always a choice of one or the other or both when you order it at a restraunt. The thing is I will be honest, I was never sure which I preferred. I love eggs and I love pineapple but which do I prefer with gammon? Until recently I didn’t know. I now know I prefer pineapple with gammon.
The point I am trying to make is that, not just about food but other areas of my life, it just feels that now after so much has happened to me I now think I am finally getting to grips on what or who or where makes me happy. My life changing experiences mean it has changed me as a person and because of that I feel like I lost me too. However I think this year I may finally work out who I am.
I will share with you what I know. I like nights in rather than nights out. I prefer nights out to be a meal and a quiet drink. I love tea coffee and hot chocolate, I love movies and Netflix. I am a chocloate addict and find dieting hard work. I prefer pineapple on my gammon. My sense of style is jeans and a top or leggings and a tunic lol. I love to dress up but rarely get chance. I am not a confident person and I do talk to much. I get nervous making new friends. I worry about what other people think and I get stressed to easily. I love wearing make up and feel vulnerable without it. I love baths as much as I love a shower.
How sure of yourself are you? Do you know who you are?
I’d love to know what you are sure about of yourself xx

F.N.D

I have a chronic illness called FND.  Yes I hadn’t heard of it either. Apparently though becoming an expert in my own condtion will help me manage it better.

F.N.D. Functional Neurological Disorder. I do not claim for one minute to be an expert in this condition. This is just from things I have learnt so far in the few months I have known about it.

First and foremost I must explain that this is a very real condition, it is not imagined. It is a problem with the functioning of the neurological system. The brain doesn’t speak to the nerves in my body.

Anyone can get FND
From what I know it’s something in the brain and can be triggered by many different things including a head injury and an illness.

The cause of F.N.D is often unknown, some people may be able to pinpoint an illness or trauma that triggered the condition but otherwise it could be several things that may have contributed. For me I don’t know the exact cause of my FND and what has triggered it, although there may be many many contributing factors. I won’t be discussing these though as they are personal. 

I first started realising that there was something wrong about 12 months after Alfie was born (so October 2016). I wasn’t feeling myself and I was utterly utterly exhausted. Everything felt like a lot of work and I was just so tired. It has taken over 2 years to get diagnosed. Bloods and scans, everything kept coming back clear until someone realised what it was. I think it was the way I described how I felt to someone “it’s like my brain and my legs just aren’t speaking to each other”. So with a mixture of elimination of tests that were clear they were able to diagnose me. I have got worse as time has gone on though. Each person with FND is different and this is just me. Some people develop it as quickly as overnight after say an injury and have severe symptoms. Mine developed over two years or more until I was diagnosed in November 2018 and got some help.

Some people may only get one or two symptoms of FND, though if your unfortunate like me you can end up with many lol. My main ones are fatigue, persistant pain and the inability to walk for a length of time (I also had a problem with my walking gait but that seems to be getting better). I do however have many more symtoms that I suffer from, such as;  memory, word finding difficulty, slurred speech, muscle spasms, swallowing problems, sleep trouble, worry and panic, dizziness, headache,sensory problems, controlling emotions (so sudden out bursts of sadness and anger), nausea, tingling hands and / or feet, migranes, blurred vision, alopciea, swelling, problems concentrating and rather embarrasingly bladder problems. Great. I mean christ it’s a good job I am married as I’m not much of a catch now am I lol. Oh I almost forgot, I also randomly go off the taste of food or drink. It can change daily. I love tea and coffee but some days I cannot stand the thought of drinking either one. I love blackcurrent juice but sometimes I can’t drink that either. It’s almost like when your pregnant and you go off the taste of things. Some days I have had to force drinks down and only eaten plain food. It is so bizzare.

These symtpoms aren’t there all the time, just the ones where I said where my main problems.

So now I have mentioned most of the symptoms I get I will try and break it down for you as this is a complex condition. I have been told it is one of the hardest neurological condtions to get to grips with, probably because it is so unpredictable.

Basicslly in a nut shell, my brain (for whatever reason) doesn’t send the signals to where it should do. Kind of like my brain and my body have had a huge fall out and no longer want to be friends. In my head I am kind of imagining fireworks going off in all directions on a plug. Having FND is about as useful as my brain trying to get my husbands legs to move, it’s pointless. That’s what it feels like some days. It feels like I might as well be sending the signals to someone elses body because it just isn’t going to happen! My brain just isn’t sending and receiving signals as it should do. I won’t lie either, it’s a bloody pain in the arse to be honest. I mean who wants to be stuck with conditons where your brain can’t function properly? Not me that’s for sure. This along with the dyslexia and dyspraxia, I feel like a prize idiot to be honest.

I honestly feel like I am unintelligent, thick and stupid! (I actually have a second class hons degree in Clinical Physiology so I can’t be that thick! Along with more qualifications). Everything and I mean everything is just so much effort now. The picture above is me sat on the stairs before I can carry on! I have to work extra hard to do things and then it drains me when I have done said task. What I wouldn’t give to be a regular tired from parenting or a busy day and feel ill from only having a cold.

That’s another thing, I am dreading getting a cold or otherwise on top of this. I may as well just not bother to try any sort of living/life when that happens because I can gaurentee it will floor me. 

There are triggers that make it worse. Food is one but this varies for everyone and I haven’t figured out mine yet. For ladies your period can trigger more symptoms. So the week before during and a few days after my period my symtpoms are worse. So you can basically wipe out 3 weeks to be honest if every month!

I wake up every day in an enourmous amout of pain, my body is so stiff that it feels like I have been in concrete and my entire body feels like a lead weight. Generally the only way to sort this out is to get out of bed and try my best to get moving. This isn’t always easy but it can ease things a bit, then I take some tablets and wait for the pain to ease. 

I won’t lie I have cried a lot about this, it’s incredibly disheartening that at 33 years old you sometimes have to ask your husband to dress you because you just can’t manage it that day. 

I have cried because I can’t wriggle my toes. Or because today all you can eat is ready made stuff even though you know it will make you feel worse as it’s not ‘heathly’, you reach for crisps and decide to just eat those but wait, you can’t even open the packet, you would have an apple but you can’t find the energy to eat that either so you sit there and cry because you don’t know what to do. I once had to ask my neighbours 17 year old daughter to open a jar of sauce because my fingers had locked up and I couldn’t open the jar, it made me feel like shit to be honest.

These pictures are my hands when they get stiff and can’t move and they feel swollen.

You know what made cry the most about having FND? When Alfie cried because he wanted me to put him to bed, read him a story and tuck him in. Where was I? Stuck on the couch unable to move. I sobbed. That literally broke my heart. I will be honest and say that trying to look after Alfie and cope with this has been less than easy. It’s been incredibly difficult.

Thankfully my Mum has been on hand one day a week to help out and the other day that Ste is at home with me working from home. I will talk about FND amd parenting in another blog though. I will say this though, I’ve doubted myself so many times about not longer being a good enough Mummy for Alfie. I don’t feel like I can give him everything anymore. I realise that isn’t true though but it’s how I feel some days.

Food. If I eat lots of junk food I know it makes me worse but some people with FND know that dairy, carbs or sugar makes them worse. I don’t know yet though I still have a lot to figure out. I do know though that eating a meal can sometimes take forever though! I just find it such hard work and I’ll be honest I give up in the end and don’t always finish a meal. I just can’t face it. I even have to drink through a straw some days or a straw with a lid on my cup! Great!

The difficulty in controlling emotions is absolutely awful, if I have outbursts I end up feeling really shit afterwards. I feel guilty for shouting or screaming or crying. There isn’t always a reason behind why I screamed or sobbed, I just have. It’s like I am a completely different person and it’s not a nice person to be either.

I still have a lot to learn when it comes to FND and a lot to learn about how it affects me and what I can do to help myself. There isn’t a treatment as such and what works for one may not work for someone else.

I had two weeks of intense physiotherapy and it really helped me get a lot steadier on my feet. They work along side Neurophyscology who help you come to terms with it and understand it etc, help with any anxiety and depression you may have as a part of having FND.

I have had my share of anxiety, I don’t always suffer with it but I do get times with my FND where panic sets in. Mainly if I am alone and feeling very unwell that day and if I am out and about.

I feel so vulnerable sometimes being out and about and on my own and something happeneing. Nothing ever had happened but it’s the thought of it. What if i collapse, my legs buckle, I can’t speak, I can’t remember how to get somewhere, what if my spasms get worse?

There are tablets you can take to help certain symptoms like the pain. Another thing to learn is PACING!! I really despise this word to be honest lol. I won’t lie pacing myself is something I really don’t want to have to do. I hate it. Get dressed, rest. Shower, rest. Go downstairs, rest. Make and eat breakfast, rest. I mean seriously, who the hell has time for that?! Me apparently unless I want to be so unwell I can’t leave my bed. 

Meditating. Yeah I was never the type but when you have a condition that cripples you, trust me you will try anything. 

People’s perception of you changes. I’m sure people have stopped asking me if I want to do things because I say no so much. Just because I say no 10 times though it doesn’t mean I always will say no, don’t make the decision for me. Ask me. I’m the same person I was before. It’s just sometimes some parts of me don’t function properly, sometimes I need a mobility scooter. Sometimes I need two crutches or one crutch and sometimes I might walk without anything. Just let me be the one to decide and remember I’m still me!

I read after I got diagnosed an artical/blog by someone with a chronic illness about the spoon theory. I sobbed when I read it and said to the lady that sent it me “I want more spoons”.

In summary, the spoon theory is based on every single activity using a spoon. Spoons being the amount of energy you have. You start a good day on 12 spoons, you get up = 1 spoon, get a shower = 1/2 spoons (if you need to wash and dry your hair then take another 3). Get dressed = 1 spoon. Walk down 2 flights of stairs = 1 spoon, Breakfast (make and eat) = 1 spoon. Going to work? well incuding driving etc = 4/5 maybe as long as you have a job sat down. Make and eat tea = depending on what your making probably about 3. That’s it. None left. You can’t borrow from tomorrow as then you will suffer and yesterday you went to see some friends so you more than used up yesterdays spoons.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Seriously though go and check out her blog about the spoon theory. Her condition is different but the reality is the same.

I understand the logistics of FND and I can explain it simply to others when they ask me. I still have a long way to go in reading new articles about FND, research and discoveries they have made. I also have a long way to go in improving my symptoms and learning what sets me off and makes me worse.

I have a long way to go in pacing myself as well.

Accepting it? Hmm I’m not sure I have done that yet……. I don’t want to be different, I don’t want to struggle. I want my friends and family to understand I am unwell and that I might not always be able to do something, I want more spoons and I want to be able to wriggle my toes all the time and not just sometimes! I want to be able to feel my legs. I am getting there though, it just takes time and I am slowly coming around to the new things and the way of life that now lies ahead for me.

I read a good explanation of what I having FND is like. It’s like having MS, a stroke Parkinson’s, and epilepsy all at the same time. I won’t lie. It’s shit. I hate it. It’s changed me. It’s changed my life. I don’t want it.

One thing I do know though, my kids, my husband and family still love me and that’s what counts. X

I started getting ill…

A very odd thing has started to happen, its hard to explain. Im coping at the moment but my legs feel odd. A strange feeling is creeping up my legs most days now and I am just so exhasuted. I can’t seem to recover from one acitivity before I have to do something else.I guess I will just keep going and see what happens. Maybe I am just imaging it and this is what it’s like to be a parent eh?
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Ok it’s getting worse now so I have finally plucked up the couage to speak to someone professionally and see what they think. Second opionon can’t hurt can it? Maybe they will agree that I just need a few good nights sleep and some rest days and I will be ok……….
Turns out they agreed and it doesn’t sound right so off I am to my G.P for some bloods, may be it’s just low iron levels or something eh?
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I’m getting a bit worried now, my legs don’t feel like mine, they feel wobbly and unsteady. Don’t quite feel like the are connected to me anymore. I am doing my best to keep going though, I don’t want to let everyone down. Plus if I am honest I feel a bit silly saying to people I don’t feel well because my legs feel a bit odd. Makes me sound a bit pathetic surely?
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Well the G.P. can’t figure it out so I am off to the hospital now to see what they can find. I’m getting worried. I’ve had to start using one of my crutches now that I had from when I was pregnant with Alfie. I just don’t feel safe anymore. I am only using it at home though and trying to work up the courage to use in a shop. What if people judge me because I am young, they might look at me lik I shouldn’t be using it, what if they think I am just lazy or something. Oh god, if they ask me I will look like such a prat, why do you need that…….me erm……my legs just don’t work. Yeah great one Emma.
In case you hadn’t guessed I have low self esteem and worry a lot about what others think. I spent some of my high school life being bullied for various things, I had no filter on my mouth and wasn’t the sharpest knife in the drawer (I’m still not now tbh – see here I go again!!). As a result of the bullying I think it’s just enhanced that side of me where I am so insecure and worry about what people think and how I come accross just so I don’t look like an idiot again giving people ammunition to say nasty things to me. You would think at 33 years old having gone through the things I have done that I would have got over this by now but apparently not lol!!!
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Well not only have I had to give up worrying about using my stick in public I have also had to stay at home now until I’m better. I feel like this illness has got the better of me now in some ways, like it is beating me and I can’t stop it. I came home from work and I was so ill I honestly collapsed on the couch and couldn’t move. Not only could I not move I couldn’t eat or speak, I was sick in a bowl becasue I couldn’t move. All I could be was breathe and blink. I had pushed myself too far now. As tears rolled down my cheeks Alfie came over and tried wiping my tears asking if I was ok. He wanted me to put him to bed but I just couldn’t. It hurt my heart so much that he was shouting for me while Ste put him to bed and I couldn’t do anything. This was not a good day. It was 3 hours before I could even sit up this day. I couldn’t get this bad again. I just couldn’t.
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Things have got worse now, although they aren’t as bad as that last day in work. Every morning now I wake up and feel like I’ve not slept even though I have. Like my body has been trampled on by a heard of elephants. My legs don’t like like mine and are pretty much unable to move. I can feel that tingling in my arms and legs again. I’m laying on 2 pillows yet I’m still struggling to breathe and I wonder what my limits are today. I’ve a feeling today is a bad day.
Yesterday I wasn’t too bad but I know now I did too much.
I somehow thought it was a great idea to clean the house, cook and play with Alfie. Today I’m paying for it. Today I can barely move. I reach for my phone and as I look through my social media and catch up on things I can hardly move my arm and fingers. Oh god. It’s one of those days.
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Husband makes me a brew before he goes to work and I sit there wondering how to get through today. It’s my day off with Alfie and I can hardly move. Hubby spoke to me and reply to him took so much energy and I only gave 1 or 2 word answers. Inside I was sobbing. I eventually dragged myself out of bed. Dyspraxia mixed with this my brain could not think at all. Everything was a huge amount of effort and thought process – which apparently today I didn’t have. Great.
I dragged myself to Alfie and a tear slipped down my cheek as he wasn’t co-operating on getting dressed and wanted me to chase him. He came over and put his small arms around me and said “ok Mummy?”. I said I was fine and bribed him with Paw Patrol to get dressed.
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Things have changed since I last wrote. It’s a whole lot worse. I’m on 2 crutches now. I feel useless now and a burden to everyone around me. I used to hate asking for help but now I’m having to learn to ask.
I’ve even had my own Grandma over to help me. She’s 80. Imagine how that makes me feel. My Mum comes over so much to help me look after Alfie and bits around the house. My husband? Well he’s just bloody amazing! He’s so understanding and without him I’d certainly struggle.
I’ve had days where he’s had to dress me, or where he’s had to sit with me while I shower in case I fall. He’s making all our meals, he’s even dried my hair for me some days as I have just not beem up to doing it. I’m pretty sure he didn’t sign up to this when we got married.
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Good god this is never ending, my symptoms are getting worse and I am being moved from Doctor to Doctor, each one testing for everything and not knowing what is wrong with me.
I feel like I am going out of my mind now, may be it’s all in my head? I mean may be it’s not really happening. I’ll just get up and walk and power through, it will b fine surely……….here I go, I will just get up and walk to the kitchen on my own 2 feet……….oh bloody hell no. My legs are shaky, weak and have given way from under neath me. I had to grab the couh quick before I fell. WHAT THE HELL IS WRONG WITH ME! I NEED ANSEWERS NOW! IM GOING INSANE HERE.
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This is beyond ridiculous now. I’ve upgraded to part time use of a wheelchair just so that i can actually get out better and enjoy life. I’ll be honest I feel useless now, useless wife, daughter and espeically a useless Mother. A let down. There’s not much I can do without help now, if I don’t get help then I just end up even worse which I don’t want, if I ask for help I feel like a useless burden. I can’t look after my son properly or take him out on my own. I can’t even play with him properly now. Alfie is used to it now but he is frutrated and I wish I could do more for him. William seems sad when he asks me if I will ever be able to walk again. I can see that my family are worried and to be honest so am I now.
I just want someone to help me and beleive me.
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I saw the Professsor today in Rheumatology, I could have yelped with joy. I actually think he understood what I was telling him, he’s the first one too. He gets me. I am finally getting a referral to Neurology. I think I might be getting somewhere now. Two years after I first started noticing a problem.
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I have seen Neurology, she was great. I am having an MRI scan and then being admitted to hospital for therapy on how to walk again. I may not get an answer apparently but at least they are helping me.
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That’s it now it’s done.
The diagnosis is made and I have to live with it. It’s nothing serious which is great I know. I get that some people are a lot worse off than me, but right at this moment I am being selfish. I am upset, angry, frustrated, I am everything in one go.
It’s not just one symptom it’s many. It’s forever and it’s unpredictable. It’s everything at once or just one.
One day I could be happily walking through the park, the next day I could be crippled in bed unable to even dress myself or feed myself. Great. Just bloody great.

The Chair…..

So let’s talk about the chair. I won’t lie there’s been a lot of different feelings surrounding this chair that I had on hire for a while. Including love and hate.
I mean yeah it was great to be able to get out and get around. Go to places with the kids and spend some actually quality time with my family. I won’t lie though, it’s also been a huge pain. I mean it was a good chair but it was box standard so I had to be pushed.
There in is problem number one. Relying on someone to push you. I hate asking for help at the best of times and that didn’t help matters either. Another situation that now means I need someone to help me with something because I can’t do it on my own.
Getting Alfie to not run off while my husband is pushing me when it’s just the 3 of us. Yeah let’s not talk about this part any more. Flipping stressful is all I will say ha ha.
The chair took some getting used to as none of us were used to pushing chairs, so we had a few run ins with kerbs and paths. Also I had a few moments of feeling a bit left, like in an asile somewhere or similar.
I tell you what though, everyone I encountered was super nice and helpful. Never had one nasty comment, which is good because I had no idea what to say back ha ha!
Something I was very aware of though was that I felt really vulnerable, I couldn’t go anywhere without someone pushing me. I also had to keep giving out directions, which then just made me feel like a pain and like I was putting too much on my family.
It really was great being able to spend time time with my family and despite the cons of having a chair I really did enjoy having it. I’m actually sad to have given it back. It made me feel like I could go anywhere and do anything. Now I feel stuck again and a bit useless.
One thing is for sure though, I won’t be afraid of getting one again. I think next time though, I will upgrade to one that I can propel myself on though or even a scooter.
You know what the rubbish part of all this is though. I’m 33 years old and I’m having a conversation about me using a wheelchair.

P.S Alfie took this photo. Despite all my struggles at the moment, I know that he doesn’t care if I’m in a chair or if I’m crutches. To him I’m the same and that’s all that matters to me. xx