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fndandmecom

Living with Functional Neurological Disorder.

Month

June 2017

On to a winner. 

What a week! It’s definitely been a scorcher! However, I am thrilled to say that I have coped really well 😊

This time last year when the weather became hot I fell really poorly. All of my usual symptoms were exacerbated and I ended up in hospital. I’m really proud of myself for how well I have been this week despite being extremely busy and dealing with the extreme temperatures. I may not be better yet but I’m definitely getting there. I have lasted all week and didn’t have a seizure until last night (Thursday).

Last week, I started my first counselling session with a psychologist. It was extremely intense but strangely enlightening. My psychologist is fantastic. She’s taken the time to read up on Functional Neurological Disorder and understands that it is a neurological condition that causes physical symptoms. She has also seen how emotional trauma has contributed to me falling ill with FND. 

Yesterday, it was my second session. I discussed how much it has helped so far to just be able to ‘off load’ all of the terrible things that I am constantly carrying around. My psychologist believes that I am also suffering from Post Traumatic Stress Disorder  (PTSD). She believes that this may have triggered the FND and sent my brain into disarray causing my physical symptoms. I personally found this quite hard to process but it does make sense. She said that I need to step back and look at what I have been through, it’s not normal and it’s not minor. It’s real trauma. Hopefully, by finally facing up to it and letting go of all of the guilt I have, I might help myself to heal some of the damage my brain has gone through. 

It’s still early days, but I really feel that I’m getting somewhere with this counselling. Having to talk about all the awful events I have been through is incredibly hard and is causing a tornado of emotions but if I continue to trap it all inside I will have no chance of getting better.

I’m going to continue to fight against this illness and I’m willing to try anything that might help. So, as I always say ‘Onwards and upwards’.

I have appealed against the DWPs decision on my PIP assessment so I just have to wait now.

Thanks for taking the time to read my story. 

Charlotte xxx 

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Climb every mountain. 

I have had a lot on my mind lately. Recently, I attended a PIP assessment which was quite a horrific experience and surprise, surprise they turned me down claiming that I am not (in their eyes) disabled. My god, how I wish they were right! 

Apparently, spending each and every day in constant pain and exhaustion is ‘normal’. My seizures that are completely out of my control are ‘normal’.

I would never wish this illness on anyone but I would really like one of these assessors to spend just one week with me. I would like them to see how most mornings when my alarm goes off, I sob at the thought of dragging my body out of bed. I would like them to see the times that my brain ‘forgets’ to tell my legs to work and I’m literally paralysed from the waist down all whilst trying to convince my 10 year old son (and myself) that ‘everything is going to be fine’. I would like them to see/feel the crippling pain in my head and my drooping and twitching face. The seizures that make my whole body feel like it’s on fire and drain away the miniscule amount of energy I have. The constant, relentless pain that I just have to live with every single day. 

It all sounds very dramatic but sadly this is my reality, this is my ‘normal’ yet Mrs May and her ‘wonderful’ (sarcasm just in case you didn’t know 😂) government believe that I’m absolutely fine and dandy. 

Yes of course, I am lucky that I can still work but my family are in severe financial difficulties as a result of me being unable to work full time. The assessment made me feel like a fraud. Having to prove to some snotty (sneezing and not washing hands) medic that I am ill just seems so derogatory and humiliating. There’s not a lot I can do, I could appeal the decision but what’s the point? I know that I am ill as do my family and friends. I don’t have any fight left in me. 

I will try my best to focus on the positives. My family and friends are amazing. Thanks to the work of charities like FND Action and doctors who specialise in FND awareness is growing each day. The more that they learn, the more chances we have of reducing symptoms and making life more bearable. Perhaps one day, one of these ‘assessors’ will experience just how absolutely awful FND can be and then they will finally recognise it as a disability. 

I will continue to live in hope that one day I will be well again. 

Thanks for taking the time to read my story. 

Charlotte xxx 

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