What's going on ?

Now, you will have noticed I don't update this very much, because it's difficult to really talk about anything you will eventually see without prompts.

However, as I'm currently going through stuff, and not many people are aware of it, I thought that I should do a special entry detailing what is actually wrong with all things me.

So, I've been struggling for years with issues related to what I actually have, but nobody could really figure out what it was, or why it was happening . I'll magnify those things shortly, and what it is I have, but I want to make people aware that I have been perhaps more quiet than you might know me to be of late, and I'm sorry for that.

So, I suffer from things ranging from migraines, to foot pain, and muscles aching and lots of things in between, more recently dizzy spells. Isolated they mean nothing, but add them all up and you start to get an answer. I'll reveal that later, but more primarily:

Some people know that I can't always tell left from right, up, down and sometimes words hit my ears in the wrong order. I'm dealing with something called Functional Neurological Symptom Disorder [FNSD] . Its quite frustrating that I know what I want to say, but in the heat of the moment, I rarely know how to be able to say it in ways that more than myself can understand. So that explains why I'm quite quiet and withdrawn sometimes when in public. I can't help it, but I'm learning to manage it better, so hopefully, I'll soon be leaving you wishing I was more quiet again ! :P


What exactly is FNSD I [don't] hear you ask. Well essentially, my Brain is wired up differently [according to a doctor] which means that it works in a different way to normal, but there's nothing "wrong" per say. It does cause issues though, as briefly mentioned earlier, my internal map is , kind of like if you play a video game on inverted controls, I see that every day. Its' hard, but I'm learning.

Now, onto the other issue....
You know when you have something you really want to do, but sometimes you have to will yourself to get out of bed [ie going to work] but eventually it happens and you carry on adulting. For me its' different in that if I have to will myself to get out of bed, that might be the best place for me.At no point have I ever made a secret of my desire to do huge things in the world, it still will happen, but sometimes its' been hard to explain why I'm not currently/ actively looking for a job, or stuff like that, and not knowing the best way to answer the question, I'll make some noise and try to move the conversation on. No matter how strong my will is to do something creative, I always have this monkey on my back dragging me down.

I'm also dealing with CFS/ME . Its a huge issue that I feel this is the best way to tell people whom I might be working with in the near future, that so long as I can control things,I'm all good to go, but if it gets in the way a little, I don;t want to be a passenger, nor do I want to become un-useful.

I'm not even sure if I've explained this in the manner in which I intended to when I opened this entry, its an ongoing process, which I will conquer one day, its' just taking longer than anticipated right now and I'm sorry, if I say I'll do things, then can't manage to follow through. I'm trying to learn how to manage everything, and I'll admit, often I get overwhelmed by it all, and I will eventually rise up, as I won't let it define who I am, or what I do, it will just be a small part of me, that sometimes likes to cause chaos in my world, but one day I'll be OK with that, as I'll know its only temporary setbacks.I just have to try to remember this, but its hard when it has me feeling so low that I can't see the high points.

The First few months

Let me take you back to the first few weeks/months after the initial stroke. I don't remember much, but I am aware of feeling very confused, and puzzled as to what had happened, and why it had happened to me. I hadn't done anything so why was I left helpless?

Physio - that felt like a giant waste of time, as I couldn't move my arm, much less grip anything, so how the hell was I to push my fingers through plastacine? How could I pour myself a drink, and why couldn't I go to the kitchen to make a hot drink? "Because your arm is too weak, you could severly burn yourself". I kept asking the same questions about food for the day, or what I was supposed to be doing. (Even now, I have times where I cannot remember a thing, and I'm convinced locations to be, such as shops, are somewhere else).

Exhaspiration was a daily occurance, especially when it came to doing simple things, like tieing laces, or getting a drink. Even being clean was difficult, as I was to "Not be left alone at any point incase I fell in the shower, or drowned in the bath". What the hell? How could I drown in a bath?

More of the same for the majority of the time, I had to learn to walk so to speak, all over again. Even now, my speech isn't perfect, and in rare cases what I say makes no sense, and isn't understood by anybody.

 

The run up to Christmas

This is a time of year where, typically I'm very angry and usually anti Christmas.

Let me take you back to a time where, hardly anyone knows about, having never been through it, and not really aware of it. This blog is designed to help raise awaireness, and although it's ten years in the making, Soon you will be able to see how hard it is for someone who has suffered a stroke to do daily tasks such as pouring a glass of water, or tieing a shoelace. Basically in short, everything I had used to be able to do, and take for granted was gone. What the hell was I to do now?

 The Begining.
One afternoon, I wasn't feeling too clever, with a headache, but I just brushed it off as just that, why wouldn't I? I went to school as I usually did (I was 15 at the time) , and suddenly for seemingly no reason, I couldn't control my arm, No matter how Hard I tried, there was no strength, or range of movement in it. Then the next minute my arm started gentle tremors, which lasted the remainder of the day, so I started to sense something wasn't right. I hadn't done anything physical (Now I can't), and So I knew I ouldn't put it down to over exerting myself. I was scared, I'll be honest, I felt helpless, as I was fast tracked to the hospital, and to this day, I have no real recollection of what was said that day after this point, or how I got there.

I'm making it up?
Early on in my diagnostic process, one Doctor, who will remain nameless, in part due to nobody being able to remember her name, partly, She stated that "It's all in my head, because I have no friends, or no father". Charming.

No I'm not!
13 people arrived to my ward room and paid me a visit. Not bad for someone who isn't really ill.

I remember feeling a bit sad when my visit was over and I would be going home, Maybe it wasn't sadness, it was a feeling of fear. At this point, my arm had gone from gentle tremors, to violent movements which extended from just my hand, all the way up to my shoulder. At this point, I couldn't hold a pen, nor draw a straight line with it. What does the next hour, day, month, or year hold for me?