And So Life Carrys On!

  
I am sat up in bed, with so much pain in my back that I am beyond crying. 

The pain honestly feels like I am pregnant, everyday, with the weight being pulled down through my back. As if I am having labour pains! 

My hips feel as if they have dropped, again the pains can be excruciating. This is having a massive effect on my ability to move. 

Even last night, my partner woke me, saying I was crying in my sleep. Reason? Once awake, I was in agony from my body pains! 

Saturday I had awoke, and I really didn’t feel well. I had of course all my usual problems and pains, but I just didn’t feel right. 

Unfortunately by late afternoon, I had been sat on the sofa downstairs reading from my iPad. When my head started dropping, I thought I was tired but wanted to finish what I was reading.

My partner had obviously been watching, as he said to me that wouldn’t it be better to put my iPad away and give my eyes a rest? I replied I was reading, I wanted to finish it. My head had continued to keep dropping. Not something I always notice, as I have them quite often. Sometimes they are very small drops, others are large and can nearly topple me over with the weight of my head and the way I am stood when my head drops. I usually make to sit down, and do rest my eyes. I’m not totally sure what these are, and it’s never come up in a conversation with any of my Doctors.

Well back to this Saturday just passed, as I was sat on the sofa. My partner said again to put my iPad down, I don’t remember too much following hearing him say that. It seems I drifted in and out, as I was having a seizure, he said I just went! I was out for a while, then he said I went to sleep. He knew this, because I started to snore! 

  
He kept his eye on me, and when I came round (he had been cooking the tea) said he would put my tea aside for me. I was in no fit state to eat, I wasn’t even back round properly yet.

I saw no reason for this seizure, no upset, no stress. I had done a bit of drawing with some new brush pens I’d got, and a small sketch pad. I had enjoyed being able to draw a little, and colouring and shading. Though the pens are nothing like a brush! If you are interested in looking at my artworks, they are on Facebook page Andrea’s Arts, just search 🙂 

I had then been reading up and researching about neurological problems, there had been something about a possible cure for Alzheimer’s. Any time you read something about a cure or something to help a neurological disorder, is exciting and can mean possibility of finding help for other disorders. It had been this which I was reading as my head started to drop, but still no reason for a seizure. I hadn’t been on my iPad for very long, so j don’t think the back light from the screen was a factor in my seizure either!?

This all just enforces my belief, that seizures are not always set off by a reason. I’m not saying g that they can’t be, just not all the time.

So I had a bad day Saturday, had to take it easy yesterday Sunday. Now I’m feeling so tired from waking in the night, with crying in my sleep, the pain in all my body. Waking most nights for the toilet, and with a constant dry mouth and breathing problems needing to take sips to wet my mouth and use my inhalers for my chest.

There are times it all gets a bit too much!

I am so tired, I just want to go back to sleep 😴💤

Catch you later folks, and thanks as always for reading X.

I Had A Seizure But Never Knew! :( 

I woke this morning with terrible pain in my head, so painful I couldn’t think straight.

Then my partner told me I’d had a seizure about 5.30am, and did I remember? I didn’t!

I’m not getting better, I’m getting worse. I cried, I had tears streaming down my face. I’m told I have NEAD Non Epileptic Attack Disorder, which is supposed to be seizures due to psychological reasons. 

If I’m having seizures in the night, without any knowledge. How can that be psychological? We have tried to discuss with my neurology consultants before, that we believe I actually also have Epilepsy. Though the only way to get Epilepsy properly diagnosed, is to be wired up to a machine that will try to catch the electrical signals happening in your head as the seizure happens.

Trouble is actually being able to catch you having a seizure, whilst wired up for the collection of information. The consultants as far as I believe, do not want to pay for me to have the testing done. It would mean going into hospital, being wired up and hopefully catching me have a seizure to test the electrical responses. There is no telling how long this may take, a day, two days, or a week? 

So if taken into hospital for a week, wired up but not having a seizure. Then the time is wasted, and that hospital bed costs money. 

Which means I’m left being ill, and my partner having to look after me as I feel like an invalid following these nasty attacks.

He made me a lovely omelet for lunch, and put “A” on it with sauce. It made me smile 🙂 

  
Whether Epileptic or Non Epileptic, I really would like to know for sure and get the correct treatment. I am left feeling so very ill, with head pains so terrible I can’t take it much more. Even hours later, my head is still hurting really bad. I don’t know what to do?

All I know is I’m laid up in bed, on a Saturday. When I should be with my family, but they are all downstairs. I feel weak, in pain, but the worst thing? The upset that I feel of not knowing, not bring in control of my own life.

Plus on top of all this, my leg spasms are killing and my back too. 

I feel I’m just left to cope on my own 🙁
Sorry, not a very happy post but then life isn’t always happy is it 😢

Thanks for reading folks X.

I Wish….

  I wish I was here, in a mystical land.

Where no pains exist, from feet up to hands.

Where there is only laugher, and joy to be had.

A place I can live, where there’s nothing that’s bad!

 © Dystonia & Functional Movement Disorder Sufferer

Tired!

image

I have no energy today, it has not been a good week. I have had two seizures and ongoing spasms throughout the week, which leaves me feeling extremely tired and very weak.

After a seizure, I find I really need to sleep. It is as if my head needs to repair, but I have to lay down I don’t have a choice.

Here is some information on how to look after a person having a seizure, and most important is that you don’t act scared. Just stay calm and as the seizure stops, tell the person they are not alone and they are safe.

image

I desperately wanted to put the back up on this site that I have, it is just a month or so short of the first year I started blogging. I am thinking I can put all those posts back on, then write how I lost my site and everything with it. Then I will restart from there, it is a great shame, but could also be a good way of moving forward as things have changed so much.

Well I need to rest, nothing new there then as I am always fatigued!

Catch you later folks 🙂

 

 

Hi folks!

image

Hi if you have taken a look in the last week, you will have noticed that my blog had disappeared. All my own fault, I messed up during having a bad head day. Whilst logging in to do a blog post, I forgot my password and blocked myself out!

i tried to get back in, had not backed my blog up since the first year and so have lost years of posts. May it be a lesson to my fellow bloggers, backup your databases! 🙁

I am so very, very lucky to have GREAT SITE HOSTS. I have to say a massive THANKS to “Cloud Nine Hosts”! 🙂

image

http://www.cloud9hosts.net

 

So here I am pretty much starting over, though I think once I have reset the sites look I may try to load the first years posts back on. I am umming and arrhing about whether to just start totally afresh. We will see.

Anyway, that’s how my blog stands at the moment. Sad and forlorn, a bit like myself really after having a day of seizures and head pulling from painful muscle spasms from my Dystonia.

I hope to catch up again soon, take care folks 🙂 x

 

 

%d bloggers like this: