Staying steady

I am happy to say my health continues to stay at a steady pace and not plummeting 🙂

It’s only a week but a week with steady manageable symptoms is the most I’ve had in over a year and a half! It’s a miracle, an early christmas miracle! ;D

Talking of Christmas I am one of those irritating people who absolutely loves christmas and everything associated with it.
My tree goes up on the 1st November every year, and stays up until 3rd January. I love decorating it, seeing it all lit up, it makes me happy.

As a child we were not well off, poor is more the word. With six children and two adults in the house you can imagine how tight money was.
But at christmas, no matter what we were treated, decorated the tree, made decorations as we watched the Charlie Brown film every year.
It was such an exciting time for me as a child, the presents didn’t matter it was the family being together doing things, being happy, silly joking and when very young writing our letter to Father Christmas and putting them up the chimney so in awe at that by doing this they would float to him all the way to the North Pole where he would read them!

To this day I look forward to Christmas, and it was made even better when my son was born on the 22nd of December, Christmas became recreating the happiness, excitement and wonder of it all for him.

I seem to have gone off on a Christmas tangent, apologies to anyone who this is too early for it 🙂

Today I am spending the day resting. I have been doing more recently, cooking, light housework and slowly walking around the house to try to strengthen my leg muscles. My whole body is incredibly weak, my conditions have really taken a toll on it. So I am trying to make a slow difference by walking and stretching more.

But for today I am resting up and not pushing myself. I know from experience that pacing is one of the most important things to do when you have health issues. And I don’t want to go on a mad crusade causing a total relapse.

So being sensible, taking my meds and penicillin, and maybe a lil bar of dark chocolate. Purely for health reasons of course.. 😉

Waiting on my specialist

Yesterday continued to be pleasent. My son bought a table and chairs set, and I had my first meal sat at the table with him yesterday.
I have missed not having a table to eat at when I can, most of my meals are eaten in bed. So sitting at a table to salad and chatting with my son was brilliant, it’s the moments like that which makes the whole day brighter 🙂

Last night was a bad one pain wise. It had been niggling all day, but by 8pm it decided to rev up the fun! I didn’t sleep until 4am ish and I’m tired and a tad irritable on top of the pain. I certainly wasn’t impressed with the intense pain, but and at one point I recalled a programme I watched as a kid, someone chopped off their own leg because they were in so much daily pain they couldn’t cope with it anymore. Of course my brain then went to ridiculous imagination mode as it tends too and I wondered if I would ever get to that point. How I would manage with no legs, as it would have to be both. And would I stop there or start hacking at other areas, my left arm, right hand and how I would make a cuppa tea, get to the bathroom, down the stairs. In the end I imagined just having a torso and head, though I’d cut the pain and neuro damage parts out of the brain.. I got the giggles at that part, imagining my self with half a brain showing through my head.. Much like Ray Liotto in Hannibal.
I decided to stop that kind of thinking as it wasn’t helpful, but the giggles cheered me up and distracted me for a bit. A friend once said to me my imagination would lead me to the money or prison, neither have happened yet but you never know ;,)

I have an appointment with my pain specialist later today, I will discuss what other pain meds I could try because they don’t work at all again. I even upped the dose last night and still nothing. It again feels as though my bones are aching, along with my usual pain. I’m sure something else can be tried pain med wise, and my neuro meds are continuing to help my seizures become less often throughout the day which is great. So half the new meds are working is good news 🙂

Not too much planned for today, I’m not able to walk very well and my muscles are all really tight. I can’t take codeine due to the pain meds so I’m just on paracetamol and oramorph to take the edge off. I say edge, it’s more like trickle off. But again hopefully there are other options and I just need to talk to my specialist, very soon.. Very very very soon!