Tag Archives: Dystonia

Dystonia is a neurological movement disorder

Learning to chill

I know it has been a long time and the last time I did write I was in hospital well I learned a lot of interesting things about me and some of my problems. There was 2 things I found truly hard to do. One is tell people my most inner thoughts and feelings, the second is how to relax and chill. The first one I kept to myself not even my family or close friends knew what I was thinking. The second one I am still having problems with. While in hospital I was supposed to be able to switch off through meditation and relaxing I was still doing my Zentangle drawings. I still haven’t found the one for me yet but I’m still trying. In the room I was in I shared with 3 other ladies which we grew a close bond with every one of them. They will always hold a special place in my heart. As always my family was as wonderful as always and so was my friends. nothing has changed my Dystonia is the same no change
I love you all for your support and care and I will type soon x

My time has started in UCL hospital, Queen Square, London

Well I’m here and it’s arrived I’m in hospital about my Dystonia. I arrived on Monday 6th January 2014 welcomed by all the nurses and other team members. I have got to be honest I was a lot worried but thinking back I should just live for the moment with my head held high. I’m not saying my emotions are in control far from it like my Dystonia I have good days and bad ones so this week is I feel so far is them getting to know me. But the really great thing is rather than just say yeah ok it’s alright they sit and listen and it’s the silly things that trigger the emotions. Not only are the staff nice but in my room which I share with 3 other ladies they are great too which I know sounds strange but is really nice too we all have our off time but we all smile and put on our brave faces together and laugh with each other. I think one thing I will always remember is the girls in my room. I shall try and keep you all updated better next week as so far this week all we are doing is just talking. So have a good week all and I shall try to type soon

A long time

I’ve not done my blog for a while I feel like I’m struggling with everything. So to update now I’m getting to grips with my CPAP machine very slowly.
The last 2 weeks have been such a stressful time as my bathroom is being converted to a wet room. I know in the end it will be nice but so much mess (now I know I was expecting some but none so much that I could not see the other end of my living room through the dust).
I was told it would be done in 2 weeks. Well it is still not a wet room not even a shower which we both so need. I feel so stressed and tired which is so aggravating my foot with Dystonia even more I am maxed out on my 31 pills but the pain is chipping away at my shield but this smile is wearing thin.
Tomorrow I am back to work I hope that is a better day.

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.

What else

I find it hard to be positive in life when it comes to my body and Dystonia. I went to my GP for the results of a recent blood test and they have found I am now vitamin B12 deficient. So I am now taking yet another pill so my total of pills per day is now 31.
I wonder if someone was able to lift me up and shake would I rattle like a maraca. So to try and help I’m trying to eat all green leaf veg which is so boring but never mind. This extra pill will not show any difference in my body until 4 months. But I can wait.

On a different note all together I got another tattoo this one is of a cartoon figure of Captain Caveman.

This is my new tattoo of Captain Caveman20130930-042345.jpg
Now I know a lot of the young people don’t know who this name was but people of my age will know. This makes me sound old I know but hey he always made me smile when I was a kid.

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

With no hardly no sleep & hospitals what wins

Well I’m just left waiting for results for the last 2 weeks hospital appointments.
Went to my GP as the chemists are having problems getting my medicine gabapentin so i was talking away and mentioned that i had a numb finger. So I also had to fit in a blood test as well because for the last 2 months I have had this numb finger. I’ve taken all my rings off and still no joy still puzzled so GP said you need a blood test. I hope it comes back all ok. But they always say no news is good so at moment no news. My lack of sleep is really bugging me grumpy is the polite word for it. Trying to stay awake while at work for my 3 days that I do is a major struggle. But on a good thing we have our new mattress coming on 22/8/2013 a tempura one I’m hoping it arrives. My foot is hurting and keeps twitching not sure what that is about. So I shall type soon take care all

The last few weeks

Well the last couple of weeks have been I think full of stressful and worry. Which I’m know some people’s alarm bells ringing saying your Dystonia will turn you into the green eyed monster you know it makes you grumpy and angry. Yes it has. I know what has made it more stressful the fact 2 different hospital appointments one for my heart (that was last Friday) and today this is for my lack of sleep I’m getting – grrrrr.

I’ve also got to have a blood test and its a fasting one so everyone is eating on the train filling it with a lot of food smells. I’ve been seeing lots of nice tattoos recently as well. I do love getting and having tattoos I think my next one would have to be one from a cartoon called captain caveman (which I loved when I was a kid).

Our small tank20130816-095330.jpgLast weekend we bought a small fish tank but I have been calling it a tank as you are not allowed to put any fish in a new tank for 4 days.
It’s a 30 litre but was told I can only have 2 fish (gold fish) but if we put a heater in it we can have about 8 fish. So we got a heater and now we got to wait 24 hours for the temperature to settle. Roll on Saturday when we can go and get some fish. I’m hoping in the back of my mind that it will help me to relax a bit and not lose my temper too much (Ha like its going to stop my temper)

Monday nightmare

Tired feeling
20130806-080532.jpg
On Monday I was nearly ready so say that’s it the reason being a very lack of sleep. On Sunday night going into Monday morning I only had about 2 hours sleep. All I wanted was my foot to stop hurting even with taking all of my 30 pills a day to help with the pain I was struggling. It also then meant I was irritable, making silly mistakes and an emotional wreck. Usually when the pain of my Dystonia gets that bad I rock back and forth which helps but I’m unable to sit at a busy reception desk doing this, so I had to push through my pain barrier mentally which I did just but today it has left me mentally and physically tired.

But I eventually made it through the day and my bed never looked so welcoming but I still could do with more sleep but I am not as bad today so I’m able to deal with today as a so so normal day for me any way.
Have fun all and have a smile on me 🙂