Tag Archives: Sleep

My sleep problem v Dystonia

For the last 4 + months I have been having a problem with sleeping. So I went to my GP and they sent me to Guys Hospital at London Bridge to study me for a night. Well my results are back and I’ve been told I suffer from sleep apnea. I then got told I have 2 options a gum shield which they don’t think will work or the ccap machine.
So today (15/10/13) I picked up an acap machine to record my breathing and hopefully I won’t snore so much and everyone will sleep better. So for 2 weeks I will be giving it a go. Then hopefully I will be able to deal my Dystonia better.

Things happening

Well on Tuesday 3rd September I had an appointment with my specialist and was pleased with how my foot looked good but then he be grabbed it to see how much movement I have which is not a lot but its better than what it has been. But his man handling of my foot managed to wake my Dystonia monster and the pain for the rest of the day was that bad all I wanted to do was shut down and try and sleep through the pain until it was bearable. But as I’m not sleeping very much I’m not coping with the pain. I am hiding it from everyone and putting on a brave face.

Then on Thursday I had to go to Guys Hospital to be monitored to try and find why I am having problems sleeping. After an hour I was ready to be monitored for the night

I’m wired up to see why I don’t sleep20130911-150615.jpg well the night as always was a long one with the wires and a hot room was a struggle but all I can hope is I didn’t embarrass myself. So I am awaiting those results now. I’m finding I’m not coping very well close to tears but hiding my feelings so I don’t make people worry. So I thought I would put my thoughts on here.
My life with Dystonia feels a lonely one.

My specialist and my new bed

After a lot of sorting out our new bed has arrived it is a tempura mattress which is was hoping will help my sleep problem. Well I’m sorry to say no it as not helped its quick at moulding to my body shape but no joy at helping me to sleep. On the Tuesday 3rd September I have to go and see my Dystonia specialist and then on Thursday 5th September I’m up to Guys hospital for a sleep chamber test. In basic sleep in a room with lots of wires to monitor me while I sleep. Going to be interesting. So this week will be busy with hospital appointments. Wow what fun I lead well I shall keep you informed on what happens

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.

Some pains of Dystonia

Hi sorry for the lack of posts but been rather preoccupied with the pain and twists of this painful condition known as the horrible Dystonia.
Still trying out this Zentangles thing to see if I can concentrate on other things rather than pain, spasms, chest pains and not sleeping very well.

My big Zentangle (it’s my left hand)20130526-145436.jpg
I went out on Saturday but ended up coming away early as I was in a lot of pain and was struggling. My foot feels tight as if it did spasm in the night or I will have it tonight. Oh joy but hey tomorrow in the UK is a bank holiday and another day with my loved ones. More time to rest.

The twist and turns of my Dystonia

I’m still suffering with intense pain and struggling with my spasms. My spasms seem to be usually fairly under control (so they should be what with taking 30 pills a day) mostly all are for my Dystonia. So I’m still unsure why the change all of a sudden. I recently saw a picture on a friends Facebook site and it explained what the cycle is as below.

The Cycle Of Pain20130522-170046.jpg
My sister said why don’t I try meditating but I don’t know how to just switch off. She also said why not try a thing called Zentangle, it is supposed to relax you but I’m not sure if that will help. If anything it’s nice to be doing arty sort of stuff again after such a long time (since I was at school).
So here is my first try at doing a Zentangle it was interesting while it lasted.

My 1st Go At Zentangle 20130522-201213.jpg
I think I am willing to try anything to see if it works as not sure if I can cope with anymore pain.

Late for Dystonia Awareness week

Hi sorry for the delay but Friday was a busy old time, but I went with my sister and got my new tattoo which It will be on display for the world to see. I really like my new tattoo as I do all my others so all that is left to do is to care for it.

My Thursdays and Fridays are as always my days I can fully cope better with my Dystonia. But just lately I’m having a disturbed sleep I don’t know why I don’t seem to be thinking about anything I just don’t seem to find my shut off button. This is just leaving me A.) tired during the day, B.) frustrated that I still have no control over my body and C.) Angry that it has stolen bits of not just my life but also my husbands and family.

My sister was up for this week and has now just gone back to her home in Devon. But I love it when she comes here but I miss her when she has to go back home as it is a long way.

My emotions are all over the place at moment as well anything sets me off just because of the lack of sleep.
I must find a way to switch off and relax.

A bad couple of days

Well just when things are doing good (in the world of Dystonia) the last couple of days have been a struggle on Tuesday i ended up on having 4 hours sleep due to waking up with the feeling of not being able breath. So Wednesday seemed a very long day at work which then the horrible Dystonia enraged the pain full throttle.

Early hours of Thursday my foot decided it wanted more and went into cramp, spasm. Which today has left me so tired and wanting to just lock myself away. If i think about it I’m always learning how to cope and better myself with living with Dystonia.