Tag Archives: pain

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.

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.

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
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 🙂

Hopefully some rest is ahead

I understand how people can change because of the pain which is caused by this condition called Dystonia. I do find it hard thinking and knowing how much it has changed me. I have become more frustrated and stubborn with this condition. The frustration is that so little is known about this condition and no one truly understands how I or a fellow sufferer really feels. I sometimes feel like I am just pulling my hair out because it makes me so crazy arhhhhhhhh.

Frustrated with Dystonia20130701-123947.jpg

I know that these are not good feelings to have nor is stress but the more frustrated I get the more stressed I get which is still no good for me. I try hard to hide these things as I know my hubby and family worry about me. I’m still trying the crutches which make me a bit quicker so I no longer feel like the tortoise and hare as I was getting overtaken by the more older generation.

On a different note i am still trying my Zen Tangles here is my latest one.

My latest Zen Tangle
I’m due on my holidays in a couple of days so I am going to find my inner restful self and have a chill time and also maybe fingers crossed I will sleep better but never mind.

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.

Still trying

I’m not sure how or why is some on the usual questions but the one that is always top which is I have never heard of Dystonia sorry.
I have as I mentioned before am trying different things. I am trying at the moment to do Zentangles.

My rollercoaster ride with Dystonia20130531-122713.jpg Which I do enjoy doing to pass the time and to distract me of some of my pain I do suffer from but I do struggle through it. At the moment I’m having problems sleeping which is adding to my condition.
I find it hard for me to open myself up in the blog as it is part of my most inner secret circle but I think the world should know that there is a painful horrible condition and its known as Dystonia.


Yesterday we in the UK celebrated a Bank Holiday not sure why but glad as more time to rest and be more me and not just me putting on a smile. I spent some more time with some of my loved ones and got a new plant. I give all my plants names (it’s just something I have always done) I have Geraldine my cactus, Penni my money plant, 2 Xmas cacti called Bill and Ben. But yesterday we went to a garden centre close to me and got a new plant called psycho which is a Cycas revoluta (wow very sharp) the reason for the name because it stabbed both my mum and I (and it hurt ouch!!).

But getting back to why I’m more confused is the Bank Holiday I keep thinking today is Monday.
While I remember a nice young lady called Rebecca Moller this week on Thursday is going for an interview for Queen Square London which will be for intense therapy (my one is for next year) I want to wish her good luck x.