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. 

🙂