Monthly Archives: June 2013

Working in the city

Hi all not done a blog for a while just because I’m running on empty of energy what with lack of sleep and increased pain, or it could be with the lack of sleep I’m noticing my Dystonia more. I will admit I did shed a tear or 2 in private (sorry for the lack of blog folks).

At the moment I’m still on my crutches which means my foot is always turned inwards. I didn’t realise how much I now rely on my leg calliper.
On Saturday I wore my calliper for the first time in a week it felt strange but good which I never thought I would admit it but it felt like a good friend had returned.
When I was told I would get one I was worried that it would hurt, look ugly and would not work. But it does work while I’m wearing it but as soon as I take it off it goes back to what I have become to think is the normal turned in posture. They are not nice looking well mine isn’t but hey it makes me more unique just like all my different tattoos I have and love getting.

I work in the city of London which for someone with disabilities like myself does not make it easy. Like with most busy main cities like London it is a fast and busy life and I’m just no longer able to be as fast as this city would like. I have had many a near miss and strong words with people, cyclist and vehicle drivers. My worst being nearly pushed into a moving bus (that was a close call) but luckily the driver swerved. Which now leaves me worrying that it will happen again especially now they are removing the safety railings at traffic lights I suppose the councils see it as saving money.

Soon I will be going on me holiday yes I’m looking forward to it but I’m one of these people that worry. But I’m going with my so patient hubby even though I’ve been moody and grumpy he always smiles and says 3 wonderful words which are “I love you” then gives a hug I’m not sure he knows how special that is to me. With that I know Dystonia will not win that day, it will be close but not today.

Testing a new pair of crutches

On Saturday I tried my new crutches as usually I’m on a leg splint and a walking stick. But in a couple of weeks I will be going on my holidays to a very hot country. I don’t think I can cope in my splint as the trainers make my feet sweat a lot.
So as I said the crutches are being tried out. The only difference is so far my body is aching more because I must be using all different muscles. Also my foot stays inward all the time so I am walking more on my ankle.
All I need is a patch and I look like a pirate arh me lovelies.

I’m feeling like a pirate20130617-064254.jpg
I’m still not sleeping right I have been to my GP but they say they don’t want to do anything about it as they are not sure if I have sleep apnea. I seem to have a constant noise in my head which yet again was told this is a known side effect of my medication. My life with Dystonia now seems to be getting more complicated with all the health issues I seem to be dealing with.
One thing that worries me a lot is that I’m putting on people (being a burden) and its just something that I can’t change. If I can’t do something I get so frustrated with myself, which then makes me emotional. Oh dear me Dystonia you have a lot to answer for.

Lack of sleep and my husbands dream

Sorry for the lack of writing but I’m having trouble still with sleep or to be precise the lack of sleep. I’m tired, emotional and in pain but I still have funny moments in my life that when I tell still makes people laugh or smile.

My tear for Dystonia makes me a stronger person20130611-085004.jpg
The other night (as usual just lately) I could not sleep so I went into my front room to look at a new solar light my hubby Steve got me. Wow when it turned on it was to say the least so beautiful. So at 1am (I did forget the time) I went into my sleeping hubby and woke him up with the new solar light on full. He sat up groaned and said go to sleep. Later in the day hubby rang said he had a dream that he was in America looking at the Statue of Liberty. I burst out laughing that maybe I had something to do with his dream.

If I think back to how I used to be and to now I know my Dystonia has changed me for better or worse I’m not sure.

Dystonia does change us all20130611-124443.jpg

Emotional times

The last couple of days have had me with lack of sleep, pain and Thursday I’m very tearful. I don’t understand why. I know pain can change me which I don’t do it on purpose.

Today I’ve spent at my mum’s as it is my mums birthday. I’ve struggled as really lack of sleep but I’ve put on a brave face by laughing and smiling but inside all I wanted to do is go asleep. Hopefully I will sleep better tonight so fingers crossed.
Have a good day everyone.

My day ahead of me

Today I’m off a local hospital as I’m having some problems with my heart my Dystonia specialist thinks I’m having panic attacks. I’ve had one 24 hour test and found I have a sinus tachycardia (irregular heart rhythm) my heart doesn’t beat below 100 and when I lay down I can hear and feel my heart going 10 to the dozen.
When I did a trial test at UCL in London I was told panic attacks are just an extra us suffers have to put up with. I’m not sure if that is true. I found this note on the web called ehealthme an interesting read but when you read that article it reads different.
But I think today’s visit is a bit of waste of time as I have still not had any tests to help with this matter. But here goes nothing as usual.

I’m still trying to do my Zentangles to give me some relax. I have one question how do you meditate I’m still confused. Still having problem with sleeping and may of have developed sleep apnea problems breathing when asleep more tests due.
Take care all speak again soon