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. 

🙂 

To see or not to see

So.. I am having a pretty bad flare at the moment.  

Bad chronic all over pain, heightened symptoms, pretty much bedbound and my neurological problems are at an all time high. 

I bought an eye patch last week as advised by the eye hospital to give my worsening of vision in my left eye a rest. I found it quite amusing when I first put it on, being from the town of the infamous Blackbeard! 

Ten minutes later my amusement had quickly evaporated and for the first time, I felt fear. An emotion I very rarely experience. 

Putting the patch on my left eye I quickly realised I couldn’t see properly out of my right eye.. Much like when you have a gunk film over your eye that blurs your vision, my right eye around the edge was blurry and I couldn’t focus at all. 

I tried for ten minutes, closing my eye, checking I had nothing in it to cause the blurriness, taking the patch off covering my left eye with my hand and finally putting the patch on my right eye. Which was a huge mistake as I’m 50/75% blind most days in my left eye and I snapped the patch off my face and chucked it on the floor, as if in some way to get it away from me. 

Now, unbeknown to me for I don’t know how long my right eye is now losing vision. Around 25%. 

I wil admit I felt fear rush in as I laid back down and tried to make sense of it while my eyes throbbed from testing them. And questions, lots of questions. 

How long had my right eye been like it? How could I have not known? What does it mean? Is it the huge neurological problems I’m experiencing at the moment, or something else. And finally, am I slowly but surely going totally blind? 

I’m guessing the vision in my right eye has been balancing the vision in my left eye to such an extent I never noticed the sight deteriorating in it. 

Luckily most of my fear was replaced by questions and what I should now do to address the matter. 

I decided to not mention it until I could moniter it over the course of the next week. So that’s what I did, I wore my glasses more, I did make shift eye letter reading tests by placing my a book, my laptop, hairspray/deoderant bottles at a certain distance and slowly bringing the items forward to see how close they had to be for me to see writing or the object.

I suffered terrible eye pain doing it, and realise my pain is now in both eyes if I look at something for long periods of time and I develop a severe headache. 

I now have a headache 24/7 along with total confusion at times to where I am, who I’m talking to, what I’m doing or what to say or write as it becomes a gibberish mess in my head. 

I am starting to realise that there is something serious going on in my brain, whether it’s the pressure of my swollen brain and spinal cord or something else I do not know. 

I spoke to my mum about it last week and said I was going to wait and see (no pun included) how the week went before I phoned my dr. 

As a chronic illness sufferer I like so many tend to treat serious symptoms as a tiny problem when most ‘well’ people would be taking themselves to hospital and not waking to see how or if it developed. 

I’m so used to having weird new symptoms come and sometimes go, or come and stay that it’s become the norm for me. 

Well, my father dropped my meds off on Wednesday and was concerned as I’m in a flare. Now I, in stupidity remarked that at least my right eye sight hasn’t  gone.. With which he answered, “what do you mean your right? Is it both now??!” 

I could’ve kicked myself, I didn’t want to worry or stress him out but it was out there now so I explained what was going on and he made me promise I would call the doctor the next day and tell her. That I shouldn’t of waited and this was serious, what if I woke up blind? 

I hate worrying him but I could understand what he meant so I did phone the doctors the next day. I don’t think I would o if I hadn’t of promised, I can’t break a promise to my daddy though! 🙂 

My doctor got back to me and is furious I’ve still heard nothing from neurology, and said shed phone them as soon as we had finished our call. She wants me to go to the a&e eye hospital for immediate eye tests as she said, it could be something else seriously causing this and she’s really concerned I could have something else going on which might make me lose my sight completely. 

She also highered some of my meds to help with the pain I’m having. 

The only problem is, because I’m in a pretty bad flare at the moment I’m unable to get to the hospital for the tests and she advised me to wait a few days before I attempted it or it could trigger another massive crash. 

So I’ll wait til after the bank holiday Monday and have my eye tests then. 

There’s a bit of me that is concerned I may wake up blind one morning, or with 75% loss in both making me practically blind. 

But the bigger part of me is trying to stay positive, take care of myself as well as I can and try not to allow the issue to take over my everyday life. Ok so my right eye is now partially blind but I can still balance my sight out enough to be able to see. I wear my glasses as much as I can and try not to strain my eyes. 

As always, there’s going to be no quick solution or remedy. It’s one of the thousand waiting games I’ve had to patiently wait and work through since becoming unwell. As all people with chronic or bad health conditions do. 

As my mother says, it’ll all come out in the wash eventually.. Which is a motto I will keep in mind as I go through awhile new area of symptoms and tests.