Not just a sick person

It’s been quite a while since my last blog. 

I had a very very bad few months where I was in constant loss of mobility, limbs, sight and in turn myself. 

I’ve had numerous doctors out, phone appointments, medication to calm my muscles and symptoms and still no real answers of why this has suddenly started happening to such an extent. 

I’m used to having loss of my arm, shoulder, leg and even sight in my left eye but never had I woken up gone to get out of bed and simply fallen on the floor as I had massive cramping in my lower torso and legs then total numbness. 

Four days I couldn’t walk, move without my muscle simply tightening more and more until I felt like a rope hoisting massive boulders from a dam. 

It was a huge shock, and still is to a certain extent though I am getting used to it now. 

Yes, that may sound odd.. I’m getting used to total loss of mobility and movement for days at a time. But it’s true. 

It’s funny what you can get used to, things you’d never think possible or even imagine could happen. But you do, quite simply because you have too. 

To not get used to it is harder, to deny, ignore or even not accept it makes it so much harder. 

I decided long ago to try to work with my body, with what was working and to not fight against something that isn’t possible to fight against. 

I used to rage, throw things, rant at myself and body because it is useless at times.. Until it was pointed out to me I was doing myself more harm than good. Mentally and physically. 

So I tried to work with it instead, and not to harm myself even more. 

Yes, I still get days I am angry and shout at my body for being so annoying, not working properly and get frustrated at my inabity to live and move like a ‘normal’ person. But those days are becoming less and less as I accept this is how things are for now and I need to accept it and focus on what I can do instead of what I can’t. 

With this determination I have started a short history and a psychology course at the end of this month. 

They’re both very simple to what I’m used to but that is why I chose them, both subjects I am very familiar with and know enough about to not have to work too hard. Before my illnesses made me really sick, I was training in Genealogy and studying to be a counseller/psychiatric therapist. 

I miss it, I miss the goals I was working towards and have decided to do something about it, no matter how hard or long it’s going to take. 

I’m sick of being just a ‘sick person’ my life revolving around my illnesses, meds, bedbound blindness state. 

I need to be more than that, need to feel like a person not just a sickness. 

Yes, it’s difficult, I’m still half blind in my left eye, my hands go numb and muscles twist in pain if I type too much. Remembering things is a nightmare, I have intense headaches and facial tics after just half hour of study. But.. 

But is it as difficult as when I first become unwell? Is it as difficult as losing my mobility for days at a time, my sight my ability to function? My guilt at not being able to be as I was, unable to be there for my loved ones as I once was? To wake each day not knowing if I’ll be able to move, breathe, talk, see properly on that day? 

No, no it’s not. 

I figure if I can get through that and the terrible days of the last two years when I was literally laid out by my conditions then I can at least try to do something productive for me. 

For me to do these courses and then the next ones and the next, to look to the future and think I can have one that isn’t just sickness and depression. 

To think I could qualify and work from home, do again a job that I am passionate about. That I can do this study from my bed with my laptop. 

That’s in the far far future, I know that. I’m am very realistic about how much hard work it’s going to be, how much it’ll put a strain on me and my body. 

But just to have that hope, the hope that I can become me again pushes me on. A different version of me, but one that is better than my ‘well’ me, with all the appreciation and good changes in my personality, because my conditions have turned me into a better person. 

And at 35 years old I am deciding that I will have a future, despite my disabilities inspire of them. I have a long life ahead of me and I want it to mean something. 

To not just be a sick person, but to be me. 

🙂 

All about… me :)

For another change I thought I would talk about and show pics of me from my past.

I haven’t really given much background on myself, snippets here and there but the older I get the more I look back, I think being unwell makes you look back more often too.

I am the fifth of six children, all from the same parents no step. I have four older brothers and a sister 17 months younger than me.

Along with my parents, and the several dogs we had over the years it was a very manic, no personal space, boisterous, noisy but happy home.
Luckily we had a three story house and 100ft garden, where my parents and sister still live, so we had room to play, fight, move about without it being too crowded.

Having four older brothers did create a lot of teasing, jokes, being dared to watch scary films etc.. which I think moulded my character a lot. The traits of standing my ground, not easily scared, my humour, the standing up for myself and others.
I didn’t grow up very girly, I played football, cricket, made dens, but I still had Barbie dolls and have a memory of washing my dollies clothes and hanging them on our washing line as my Mum hung our washing.

We were not rich, or well off. We never had spare money and were lucky to have enough money to pay the bills. We grew up with no central heating, we relied on three coal fires and in a three story house you can imagine how un practical that was. In the winter it was freezing, and I mean so cold you could see your breath when in bed.

I have so many happy memories though, toasting bread in front of the fire, laying against our much loved and still missed dog Kano as I read and wrote stories. Playing cards, star wars figure games with my brothers. Playing practical jokes on each other, being teased but always knowing my brothers would and did fiercely protect us.

The one thing we always had was food. My Mum is the kind of woman who will not let you leave her home without haven eaten something or taken food with you. God knows how she managed this with so many mouths to feed, I know she went hungry many times so there would be enough food for us children.

This resulting in me being tubby.. well overweight as a child.

I matured at a very young age, physically as well as mentally. I was not a pretty child, I had big front teeth, wore glasses, was tubby, clumsy and wore baggy clothes to try to hide my chubbiness and maturing body.
This is me at 7 years old…

It took having my son to lose weight, which is unusual. I was 12 stone before pregnancy, 14 half stone after pregnancy and within six months was 9 stone, which over two years became 7 stone which was way too thin.
This is me at 15 on my sons 1st Birthday

From having my son, I changed my life around. I was a little wild before hand, never in school, hanging around with older and wrong people. I have no doubt I would not be here today if it wasn’t for having my son, I was on a slippery slope that could of only ended badly for me.

At 15 I was a Mum, working as a cleaner, in school and college. They have a brilliant school for young mothers in Bristol, where you take your children with you as you study. I have recently looked it up and it now offers 6th form and university level courses. I haven’t visited for a few years and kept meaning too, but the last two years have made me unable to do so. I plan to get in contact with the headteacher soon though. She is an amazing woman who campaigns for young mums and help any of us she can.

Some of my best years were spent in that school, I still miss those days more than I ever thought I would so many years later.

As regular readers know I suffer from Endometriosis too, the last 8 years of my life have been blighted by illness. I was not as bad then as now, and still had the silly side I do now which has helped me through a lot.
Dressed as Miss Christmas 3 years ago

So that is a little bit of my early life I wanted to share with you. I hope it didn’t bore you too much 😉
All of us that are unwell, have long term illnesses, short term, any illness that impacts on us had a different life before we became unwell.

For the people who only see us as we are now, sick, stick walking, wheelchair using bed and home bound need to realise this. That we are people, just like them. We were children, teenagers, adults. With all the past, memories, feelings families, experiences that well people had and have.

We are people, not a diagnosis.

Restless

I don’t know if it’s a good sign or not but I have been getting increasingly restless about my lack of achievements recently.

The last two years have been the only time I have not been in education of some kind, I loved learning and became restless if I didn’t.

From psychology to art to history to how things are in the word and anything and everything I could stuff into my brain! I soaked it up and it was for future work, but also myself I have a real yearning to know things and it gives me great pleasure and satisfaction.

Now of course I can’t keep whether someone asked for tea or coffee in my head, let alone when and how wars were fought and were.

I find this lack of retaining information beyond frustrating, it really gets to me and it must be so annoying for others when I constantly ask the same questions over and over again because what they told me has simply gone. Totally erased from my memory, within seconds or hours of being told.
Gawd knows where it goes, maybe the mind fairy.. One who steals information and memories from me while I’m not looking… A really really mean fairy! :O
Ha 😉

Seriously though, I miss learning I miss feeling the achievement of it and also I feel stuck in a rut life wise.

I always imagined by this age I would own my own home, have a decent paying job and living pretty comfortably. Not rich but not having to worry if a bill came in. I studied for years to fulfil this dream, to become a psychiatrist and help others was and is still my main aim. But the money would’ve made life comfortable too.

Then I found myself moving into genealogy, I’ve always loved history and found I was good at it and helping trace family trees was brilliant. Still I didn’t let go of the psychiatry but continued to study it along side the genealogy. I was capable of doing this, and have three books on the go too, all at once. My brain soaked up everything, I was a complete book worm always having three books at a time I was reading, one in the kitchen, one in the front room and one in the bedroom. I was able to read them as I was in different rooms, never losing track of the stories.

Now I can’t remember what day it is without checking several times through out the day.

Now restlessness has kicked in and I yearn to be studying, reading, learning. I feel as though I’m existing, stuck in a void that only changes die to the massive different symptoms I have daily.

But I have made a decision. I am looking into doing a very short online course.

My sons girlfriend mentioned a site that does them a few weeks back. She is planning to do one while she waits for her university place.
They’re between 4-8 weeks long and only 4-8 hours a week depending on the course.

This would wean me back to very slowly building up my memory again, test my brain and see how it copes with new information. I aim to do a history one, I figure that if it’s about something I have a passion for it might help me a lil more. Plus they’re free, which is brilliant seeing as there is no spare money for anything, let alone experimental things.

I can only try and if I do fail, well at least I tried. It has to be better than this feeling of moving nowhere fast.

And who knows, maybe one day I will finish my last two years of both or either diplomas. Even be able to go back and work as I learn.
It seems like a long shot but I’ve never been afraid of taking chances, one day I might even take over the world!!

Hmmm.. Ok, Maybe a lil to forward thinking.. I’ll stick to the short online course for now… 🙂