Conditions affecting my life.

Animalloverb · December 8

I know I spoke a bit about this earlier but I want to talk about it in slight more detail. I hope it doesn't bother any of you that some of it is repeated.

I have a condition called Epilepsy. I experience multiple types of seizures- tonic clonic, focal, absence, and myoclonic.

This affects My daily life, I am at risk of status epilepticus due to how often they happen and how they can often end up being prolonged so I need an ambulance.
I am on such a High dosage of medication, I take 1000mg twice a day and I still experience odd seizures but my epilepsy specialist won't do anything and keeps telling me that the ones I am having aren't serious. I have asked them to change my medication as the one I am on clearly isn't working but they have refused and they have also refused to give me rescue medication to avoid me going into status.
Before long my epilepsy will take away everything, it already has changed my life from the day I was diagnosed, I had to change my career slightly and that hurt me so much. A lot of jobs refused to take me because of my condition aswell. My epilepsy can also affect my memory.

I am so fed up and I really wish I didn't have this condition. I get upset about how hard life is, and how horrible this condition is.

I also don't just live with epilepsy, I live with so many other conditions too that affect my daily life. Such as my vision impairments. I have a nystagmus that causes my eyes to move uncontrollably which leads to things being very blurry for me. I also have another eye condition, I am not sure on the name as they are so hard to remember spellings of, but it affects the nerves at the back of my eyes, I have to get frequent checks as I can go completely blind at anytime.

I also have hearing impairments, I am completely deaf in one ear and partially deaf in the other. I get ear infections very often due to a bone that is damaged in my ear and due to a hole going all the my through my ear drum. I am awaiting surgery to hopefully help and make me have less infections but they can't do the surgery until I no longer have an infection. I let them know that I no longer have an infection and by the time they book my surgery I get an infection again.

I also have a condition that affects my feet. I can develop extreme pain to the point where I cannot walk. I have been given some specialist equipment to use to help avoid the condition flaring up but it does still happen.

I also have Autism, A social anxiety disorder and PTSD. I am not going to get into those though. I am more down about my epilepsy than anything else.

sinead276 · December 10

sending you the biggest of hugs @Animalloverb - all those conditions sure does sound like a LOT to deal with, and the fact that you do shows us all just how strong of a person you are, and for that you should be so so proud of yourself.

it sounds incredibly frustrating that you aren't being listened to about your epilepsy the way you want and need - and whilst i may not be the best for advice, all i can say is keep fighting for your opinion to be heard as you know yourself best, and hopefully the doctors and you can come up with some type of solution that works better for you.

but once again i'm so proud of you

Animalloverb · December 10

Thank you @sinead276
That really means a lot.

I have been so down lately and I still am. Not only about this but about other things aswell. I feel like my depression is coming back.

Ech0 · December 10

@Animalloverb Reading about everything you’re managing truly shows just how incredibly strong and resilient you are. Living with epilepsy on top of all your other conditions sounds absolutely overwhelming, and the fact that you’re still trying your hardest every day even on days when it feels impossible is a testament to your strength.
It must be really disheartening and frustrating when your concerns about your epilepsy aren’t being taken as seriously as they should be. It’s completely understandable to feel upset about that because you know your own body and what you need better than anyone. You deserve support, understanding and care from the professionals looking after you.

I can only imagine how exhausting it must be to deal with so much and feeling down doesn’t take away at all from the incredible courage you show just by living your life and speaking openly about it. You are doing the best you can and that is more than enough. Please remember that we are here with you, supporting you, holding space for you, cheering you on every step of the way and we are proud of you.

Animalloverb · December 10

It doesn't feel like enough, nothing I ever do feels like enough.

My hard work is worthless. Everything I do is pointless at this stage. I am hurt.

Ech0 · December 11

@Animalloverb I hear you and with everything you’re dealing with, it makes complete sense that you feel worn down and hurt. But please know that the fact that you’re still here, still trying, still talking about what you’re going through even when it feels unbearable: takes a lot of strength, even if it doesn’t feel like it right now.

It’s not that your hard work isn’t enough, far from it. You’ve been carrying so much, more than anyone should ever have to, and doing it with far too little support from the people who are meant to be helping you. You are showing up for yourself in circumstances that are extremely difficult, and that is nothing short of remarkable. You deserve to be seen, to be cared for, and to have your struggles treated with the seriousness they deserve.

We are here with you. You don’t have to hold all of this on your own.

Animalloverb · December 11

I am not worthy of support, trust me I know.

Sian321 · December 11

Hi @Animalloverb , how are you this afternoon? Firstly, I just want to say thank you so much for taking the time to make this Boards post and for your courage in sharing. Not being taken seriously by your epilepsy specialist sounds so isolating right now, and I wonder how you feel about their decision not to give the rescue medication?

Before long my epilepsy will take away everything, it already has changed my life from the day I was diagnosed, I had to change my career slightly and that hurt me so much. A lot of jobs refused to take me because of my condition as well. My epilepsy can also affect my memory.

Reading this, I really felt the scale of the loss and disruption that the condition has created for you at different points in your life so far. That sounds extremely difficult, particularly having these big changes happen totally outside of your control, needing to turn away from a job you loved, and the uncertainty of not knowing exactly what will happen next or what it may affect. And you mentioned how the other conditions that you also live with intersect with and compound your symptoms too. This sounds really exhausting and frustrating, and it's so, so valid that there's the urgency of wanting to be taken seriously and to have your concerns heard loud and clear.

I hear you saying that lately this has left you feeling hurt and like everything you do is never, ever enough. I really hear how much this is weighing on you, and how it impacts you day-to-day, touching multiple areas of your life and leaving you feeling that perhaps you're not worthy of support. That sounds like a really painful thought to have, and you're doing so well to talk about this out loud and thank you for letting us listen.

In some of the hardest moments when you're feeling depressed, what do you wish your healthcare providers could really see and understand about what you're going through?

What would you want for the next step to be in your treatment or support if you had full control over what would happen next?

We're here with you and we're listening.

Animalloverb · December 11

I'm doing awfully this afternoon @Sian321

Sian321 · December 12

Hi @Animalloverb , that sounds extremely difficult. I'm so sorry you're going through this. What does feeling awful look like for you at the moment? We're here and we're listening if you're comfortable sharing more. Your feelings matter, and we care about your wellbeing.

Animalloverb · December 12

I don't really want to talk about it, my apologies.
@Sian321

I am still in pain from my last seizure as I cut myself during it.

Conditions affecting my life.

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