I have a chronic illness called FND. Yes I hadn’t heard of it either. Apparently though becoming an expert in my own condition 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.
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