If you want to know more about the functional part of my disorder.
You can check out all the information at my other website.
What they don’t factor in, is the getting it out of the garage or shed, and back into the garage or shed on the return. It kills my back from stretching to do the locks, just getting in and out is a trial in itself!
Plus then there are the rude insensitive car drivers, beeping their horns at you and showing the finger!
I own a scooter that is allowed on the road, it is big, goes at ten miles an hour and I have tax discs. I even have the paperwork, from the DVLC with its registration number on. The paperwork for if I want to sell it on, so yes, I’m definitely allowed to drive my mobility scooter on the road!
I NEED IT because I am disabled!
But when you get beeped at, it can make you jump. One jump can turn the steering, one turn can cause an accident. That accident can cause all sorts of havoc!
All I’m asking is that you show more thought, care and understanding for the disabled who have to use aids to get about. Just like you use a car to get about!?
You never know if you may become disabled one day, and need a mobility scooter too?
Umm and what if, it was all because you beeped a mobility scooter? That gave them a shock, and made them jump? That one jump, that turned the steering. That one turn that caused an accident, that accident that caused all sorts of havoc?
Just what if?
If you were in that accident?
If your partner were in that accident?
Your child were in that accident?
All because you beeped a poor mobility scooter driver, who depends on that scooter to get her to where she needs to be?
Thanks as always for reading folks X.
For many years now, I have found myself stuck in a merry go round. Sent from one hospital to another, for all the different appointments for treatments I need for my ongoing problems.
Hopefully now this report has been done, there may be some better formats put together. Which may provide a more guided help for neurological patients, and give them better more consistent and thoughtful care.
Try to put together their care systems in one hospital, rather than them having to travel all over and retell their stories and problems over and over again!
The way it is at the moment is neither good for the patient, or the Drs trying to look after them. As a patient is treated in many different places, it means that their is no consistency of notes, to keep on top of what is going on with the patient
Not all hospitals systems connect to other hospitals, and the follow up report letters go to the patients local GP Dr. So it is down to the patient to have to keep the other hospitals up to date, and honestly it’s hard work remembering everything.
As a neurological patient, we have memory problems already. So expecting us to be able to pass on information during our appointments at another hospital, can be very trying when you are there in the moment only thinking about the reason you are there for that appointment!
So fingers crossed that this report, gets the neurological system sorted out for better care treatment for future neurological patients.
Thanks for reading, as always folks 🙂 X
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!
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 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.