Hunt

Dear Jeremy Hunt,

 

Do you have children, Jeremy, daughters?

Imagine them dying in your arms at 18months old. Imagine seeing them struggle every day. Drs don’t listen “take more tablets” they say. Imagine having all the hope for your daughter dashed because of something that is medically wrong. All those aspirations you have as a parent, gone.

 

When you have children you want nothing more for them to be happy, to be loved, to be healthy.

 

I’m not healthy Mr Hunt. I have severe epilepsy. At 27years old I cant be alone. My father sits there every day while I seize. Sometimes stopping breathing. Wetting myself in the most humiliating fashion. Imagine that Mr Hunt, having to clean your 27yr old daughter because she’s messed herself, wet herself, been sick on herself.

 

The unconditional love of a parent is never ending, however it seems that that’s where unconditional stops.

 

I’ve been treated terribly by YOUR NHS, a system that was founded to protect and look after the citizens of Great Britain. They haven’t looked after me Mr Hunt. They’ve ignored me, thrown me out of resus, refused me treatment because my condition was (is) so rare. I’m being made to suffer because YOUR Doctors don’t know enough about my deadly seizures.

 

Do you promise to keep your children safe, Jeremy? It’s a luxury that you’re able to afford I’m sure. Private health-care? Big House? Only the very best. No 14hours waiting on a trolley for you or your family. Unfortunately your reality is only a pipe dream for people like myself. People who have to live day to day with chronic illness, we are the people you are denying safe treatment to when you’re making those Junior Doctors work 42hour shifts.

 

Mr Hunt, in the past 12 months I’ve been admitted into ICU 31 times. 31times. Am I to trust those Doctors who ship me out every time with a new tablet and a hopeful smile, only to be back in a week? How do I explain to my son that I’m not home to put him to bed? How do I reassure my son that I won’t die, because those Doctors will fix me, right?

 

As a woman who has paid into ‘the system’, who has a degree and a decent level of intellect I like to think that I will power through. I can’t say that I have faith. In the NHS or you to lead the way. I don’t want my parents, partner of god forbid son to find me dead from a seizure.

 

Without sounding melodramatic Mr Hunt, I could have a seizure at any moment and not wake up. I have lost all dignity to this disease and all sympathy for you. You and your privileged life.

 

The NHS you have crippled has denied my home care, I’ve been told to “go into a home” and to give up my much loved child because they simply cant fund my quest for a semi independent life. Would you put your child in a home? It seems incomprehensible, but that is my reality. I’d love to swap if you’re up for it?

 

Mr Hunt, you have driven the NHS into the ground with your ‘money saving’ plans. You have lead people to suicide, you have lead people into the depths of a hypothetical hell with the choices you so very proudly stand by.

 

Do people not matter any more? I certainly do when all I’m told by professionals is that “funding cuts are to blame.”

 

 

I’m not alone Mr Hunt. There are thousands like me across the country, some far worse. I’m lucky to have my family. I’d be dead without them.

You have crippled an entire section of society. I hope you’re proud.

Gasping for Air 

It’s been a year now. A year I’ve been drowning. Before I was coasting, gently rowing down the river of life, taking the ebbs and flows. Now I’m overboard and struggling to surface, I’m shouting for help. People can see me but walk past. I’m splashing and spluttering; taking on water. I’m slowing drowning and no one is trying to save me. I’m alone. If im going to survive it’s up to me. 

I feel utterly alone. My friends and family are around but I feel stuck in this broken shell of a body. A year since my body started rebelling. Failing me and my family. My son. I want my son that has a mummy that can take him swimming. The cinema. The little things… It’s those things that mean the most. 

Epilepsy isn’t just convulsions, it’s the mood swings, the temper, the memory loss, the pain and tiredness. People think you’re lazy, when in fact I’m recovering from a 24hr seizure. 

This disease takes lives with killing you. I’m a 27yr old that has to be babysat 24/7. Not one second of my day is left to chance. I’m not able to bathe, cook or make tea without supervision. I have less freedom now then when I was a teenager. No more going to the shops quickly. No more long bubble baths. I can’t go to certain places because of the lighting… I’m living a nightmare. 

I’m constantly on edge. I’m scared to go out. Will I seize, wet myself? Be karted off in an ambulance? I’m ashamed. My anxiety is so high I hate leaving my house, being in public; around strangers or crowns sends me into over drive. I’m convinced if I ‘go’ I’ll be trampled. Always grasping for air. 

There’s been comas, there’s been feeding tubes so when people try and reassure me it can’t get any worse I know they’re wrong – I can die. It plays on my mind so much. Death from epilepsy is real and it terrifies me. It’s taking over my life. I want answers, choices and decisions. 

I want a life jacket. 

I can’t breathe… 

I’m suffocating in my own house. 

I want to scream but I can’t gather the breath. 

Nothing around me is right, I don’t know where anything is. The household doesn’t feel right. I feel like a guest. Walking on eggshells. 

I can’t be alone. I understand that, I know that I need to stay safe and that’s parmount but after seven months of being babysat almost every day by one parent or the other I’ve reached almost breaking point; I feel so incredibly guilty. 

They’ve done so much for me, everything at some points and now I can’t even express how I feel because it would be throwing it all back at them. I’m not unapriciative, I’m angry and I’m struggling to control it. 

At the moment my beautiful mother is staying, putting her life on hold once again to come and ‘babysit’ me. Looking after my son and keep my household going. But I don’t want any of it. 

I want my life back. 

I hate this swinging from acceptance to resentment, just as I’m getting ok with being more physically disabled and therefore needing more help, I’m angry at the people helping me. 

I’m exhausted, I’m in pain, I’m going in and out of consciousness some hours but I’m not angry at my condition any more. I’m angry at the people here. My thoughts don’t make sense, my mind is a mish mash of emotions of which I’ve tired of. 

I want my old life back. I want my independence back. 

My Epilepsy Story

In honour of Purple Day, this is my Epilepsy Story;

I was a perfectly healthy full term baby, but at 19months I climbed out my cot. My parents came into find me screaming but I seemed fine. The next few days I didn’t eat, Drs reassured my mother I was fine. About a week or so later my father was taking me walking in the buggy with a friend. The friend peered in and saw my lips blue, eyes rolled back and hands ‘clawed’. With running home I’d stopped breathing and my father had to give me CRP for the first time. We lived about 40minutes from the nearest hospital. My dad can’t talk about that day without crying. 

This carried on happening and I was put on Epilim, they were so frequent that my parents moved to be closer to the hospital – with added line direct to the ambulance service. It was a tense time. I was on Epilim until I was five. At that point it was deemed I’d grown out of it. No more seizures, no medication. My parents were posed for life to returned to normal… 

I stayed seizure free until seven. I had a tonic colonic in my mother’s bedroom and was immediately put back on medication for six months.

– seizure / medication free until fifteen 

At fifteen I began having focal seizures as long as tonic colonics and out of no where once again my dads biggest fears returned and I moved in with him. After lots and lots of testing it was decided that these new seizures were infact epilepsy again and it was more hospital stays and medication. 

Since fifteen it’s been telemetry, EEGs and medication changes. I’ve tried more or less every medication and most gave me horrible sideffects. I was lucky that although the seizures were frequent I was able to still keep on top of school work. Some people aren’t as fornutnate. 

I carried on to go to uni and have a healthy baby. All while on medication. 

Things were frequent but steady until May of last year. At the time I was on ezlicarmazapine, my liver started showing signs of distress and they ultimately decided it was the medication and that it needed to be changed. It’s been down hill since then. 

October of last year I called my father to let him know I wasn’t feeling great. Apparently he arrived to find me asperating on my own sick, once again lips blue, not breathing. He once again, with the help of a neighbour, put me on the floor and managed to perform cpr & get me breathing; leading straight back into a seizure. I was put in an induced coma for 8 days. 

Since then I’ve been going in and out of hospital at least twice a month. Many ICU stays, long hospital stays and more tests. It’s been pretty much hell. My life has done a 108; no longer able to be alone my parents are forced to be my carers. Everyone’s life has had to change. Exceptions have had to be made and precautions put in place. I’ve died twice and thankfully been saved. My son has been traumatised, my partners job has been put at risk and my mother has literally had to move 200miles every Monday since October to be my full time carer. 

My family have found me face down in vomit. I’ve woken my parter by wetting the bed. Most of my street has seen me naked. Epilepsy doesn’t leave you much dignity. You need to get over the fact you need help. It took me a while to accept that I was so severely ill. I hid how ill I felt and felt awful guilt for keeping everyone’s lives on hold. I’ve learned to live with everyone’s frustrations, I can’t imagine how hard it is for them. To see me so sick. To risk passing targets, promotions and work because of my illness. 

I’ve gotten better at being open. I won’t push myself. I’ll tell my partner if I’m feeling an aura or the situation is too much for me; I get overwhelmed easily. My son has become more confident with my seizures, with the help of Epilepsy Action he’s learnt the ins and outs. He knows I’m not in pain, he’s still uneasy about my eyes rolling but he’s getting there. Acedemically he’s excelling… I couldn’t be prouder. 

I’m not the person I was last year; mentally, emotionally and of course physically. I’m weaker and my cognitive function isn’t great. I still have seizures daily, both tonic colonics, partials and absences. I’m a survivor but I know I have to be careful and with my son I don’t taken unnessesary risks but I still need to live my life. 

I’m 27, chronically ill & standing strong. This is my story. 

1 in 103 

I’m not a statistic or a number. I’m a human that simply has this condition. 

In the U.K. 1 in 103 have some form of eliplepsy yet the funding is disgusting lacklustre. The stigma continues to be filled by ignorance and the education simply isn’t there. 

My illness, condition, disease whatever you feel comfortable calling it, has changed my perseption on life completely. No longer care free or oblivious to the dangers of life… Now I’m acutely award of my mortality, increasing becoming comfortable with the thought of being a ‘disabled person’ and realising I’m no longer able to do the things I once was. Slowly. 

Tomorrow is Purple Day 26/03. A time to raise awareness of epilepsy and everything it entails. 

I’m proud to be 1 in 103. I’m different, and that’s ok. 

Exhausted am I

I haven’t really written in a while. Through depression, through anger, through sheer exasperation at the situation. 
Well I’m back, I’d love to say bigger badder and stronger but, alas, as we know that isn’t the case. Gosh I sound so pompous “alas”. Who do I think I am? 

So there has been hospital stays, a stint in ICU and medication changes and retractions. It’s been a busy month. Too busy. The last three days all I’ve wanted to do is sleep, vicious circle. Sleep, depressed. Depressed, sleep. 

When I’m sleeping I know I’m safe. I can’t fall. I can’t feel the pain and I can’t consciously know how ahoy my current situation is. To be in fear of your own body, what it can do to you is scary. I fear myself and I can’t even consciously control it. 

So, medication. I was sold this new ‘wonder drug’ Briveacetam. Basically it would cure me, no more hospital visits and bish bash bosh it would all be sorted. I literally turned into a monster. I exploded into this angry, raging bull. I developed a violent streak which had never been so…..  

And that’s when it happened. 

Right there I had a seizure. I have no idea where I was going or what my thought process was. 

That’s a daily thing, I’m used to it. 

Normal is boring, right? 

I started a new medication nearly four weeks ago. Even writing this is hard, my seizures at are the same except my moods are lower and my anger is at an all time high. I’m scared to speak to people, anyone. I’m almost close to becoming violent… 

I hate that a medication that is meant to help me is ruining me. My head isn’t staying still, my thoughts are racing and to top it off I’m STILL having seizures! I’m exhausted. The only way of getting away from these disgusting thoughts and feelings is to sleep and that would be so easy. I’m exhausted, either through depression or medication… I sit for more than 15 minutes and I’m sleeping. Deep, needed sleep. 

I have so many questions to raise with my nuerologyical team in March. 

I know I’m not alone, with stats of 1 in 100 there are millions of people suffering but sometimes I wish I could get a break. A week of feeling ‘normal’ would be earth shattering. 

I’d love to be normal.

Dr VS Dr

So do you trust the Dr who has been put in position, trusted to look over a ward OR the Dr you’ve always had, knows your condition(s) in and out, knows my whole family by first name and basically I’d trust with any nuerologyical situation. 

I’ve answered my question, but what would YOU do if the first one wanted discharge from hospital and the second wanted to question his decision? 

Is it safe for me to be out? Are they even in control of my seizures or this new possible condition…? 

It makes trusting people, either medical professional harder than ever. 

All Out Of Spoons


It’s taken for granted isn’t it. Health. 

The health don’t mention it, it doesn’t come up, they drink their smoothies and think eating a vegan diet will keep them from getting cancer when in all reality, its odds. 

Did I deserve this because I have a KFC once in a while? Maybe because I’m overweight and a lesbian I deserve to be ill? Trust me, no one deserves this. 

They are to and froing with another diagnosis but I won’t write about that until I know more. It’s not worth the worry to me… 

I’ve been in hospital 10 days now. I’m in a bay with older people, people that have given up. People who can’t walk, use commodes and are constantly complaining; trust me it doesn’t inspire confidence or promote positive thinking. I’m low, I’m angry and I’m ready to get out of here. 

At this point I’m angry at myself. Myself for being broken. People for leaving me in the past. People for sticking with me in the present and promising to be there in the future. I’m angry at my life. I’m angry at being sick…