Crashing Christmas

It’s been a difficult few weeks, well, couple of months to be totally honest. 

I had a massive crash 6 weeks ago, I had lost the use of my left arm and shoulder again and my body was in constant spasm. 

Then I got up in the night to go to the bathroom, and my legs felt like jelly, and really shakey. 

I managed to get to the bathroom, and then back to my room.. Despite the now tingling all through my legs and back. I shut my bedroom door stepped forward and ‘bam’ I went down like a large bag of potatoes! 

I had lost total feeling from my waist down and couldn’t move that area at all. 

I will admit, it was very scary. I don’t often feel scared about my symptoms but this, this was a massive shock and with only my right arm working I felt real fear. 

I was slouched on the floor for an hour, slowly inching my way to my bed by pulling myself with my right hand. 

When I got into bed, I was absolutely exhausted. I reached for a drink and my pain meds and diazepam and tried to relax my body as much as possible. 

About 4am I text my mum to ask if she was up, and she was as she’s a very early riser. I chatted to her on the ‘phone about what was going on and made arrangements to get to her house so I could be cared for until it passed or eased off. 

I was there for two weeks, and I slowly got my legs back to walk. I was cared for so well by my parents and sister, and I am and always will be incredible greatful for them and their total support, help and love. 

Since then I am losing the use of my legs on and off and the spasms, pain  and cramps are in overdrive. 

This flare and relapse has put me back months, I’m much better than I was but my body is screaming at me 24/7 and I feel these symptoms, the loss of feelings in my legs is going to become a part of my illness, as all my other new relapse symptoms have. 

So again, I’ve had to put more measures in place to help me through this and seriously think about my future. Like moving and getting an electric wheelchair after I do so I can not stretch and lose the use of my arms by using my self propelling one. And keeping my mobile with me at all times in case the feeling in my lower body disappears again. 

And with Christmas and my sons birthday just around the corner, I’ve been focusing on getting better so I can enjoy and take part of the day. For my sons birthday rather than Christmas. 

I find this time of year can be very depressing when on social media. All the pictures of Christmas parties, social events, tree and decorated homes. 

Don’t get me wrong, I’m happy they are happy and can do these things. But I will admit that it makes me feel left out, look to the past when I was well and did join in with all these things. 

I’ve only just got into the Christmas spirit, and my son hughly contributed to this by encouraging us to put the tree up together. 

That was a beautiful time, spending that time together,  I loved it and I’m glad we put it up as it does make a huge difference and creates a Christmas air 🙂 

I think that many people who are unwell struggle more at Christmas time because there is so much to do, but you’re unable to do much or any of it. The pressure is huge and others can forget you are sick and assume you will sort a lot, which causes huge strain for our bodies and minds. 

We don’t suddenly become well because it’s Christmas, although I would love that Christmas miracle! 

It’s a day that pushes our bodies to the limit and causes huge recupusions, including  severe flares and relapses. 

I know I have to be extremely careful and not push myself between now and Christmas, because darn am I missing out on my sons birthday and then Christmas Day! 

Pace, pace, pace, pace.. Will be my constant repetitive motto, and being sensible and good for once! 🙂
 

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. 

🙂