Monthly Archives: May 2013

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.

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.

Another wait

My time seems to be either work (now only 3 days a week) hospitals (I’m under 2 at the moment) UCL Queen Square London or Darenth Valley.
I’m not very patient person I want things to be done straight away. I would rather be early than late for anything which is a good thing but when early then comes the dreaded Wait.
My pain for some reason the last couple of days has been a lot more intense I’m not sure why I’ve not done anything different. But nothing I can do but wait.
Been given a date for UCL intense therapy sent on a first class stamp for wait for it……….January 2014 which I’m looking forward to some help (I hope) but I know it’s going to be tough. Botox at moment has stopped because it has stopped working. So yet again it feels like I’m on my own trying to deal with this strange word known as Dystonia.

I know some that know me by now say you have your family and friends new and old. But I still feel so lonely with condition as its only a fellow Dystonia sufferer that understands what I / we go through. We are like a very rare breed.

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.

My weekend begins. Time to unwind

While on my way home on the train I am thinking so many sad thoughts because today as been such a bad day mentally and physically. I fill drained and my chest is tight. At least I got hugs waiting for me at the station from my hubby Steve Continue reading

Stressful few days

Sorry I didn’t write on Monday as I had a stressful day at work. Last year things got too much for me to cope and i had to go part time (3 days a week) as i felt like i was loosing my battle with Dystonia. Now I know that stress is a very big no, no for Dystonia Web Site UK Sufferers but after suffering nuisance phone calls 155 of them just broke the last straw.

I went home with a terrible headache and ached all over. So it was no surprise to me that my pain had reached almost to breaking point, I had just I don’t know how to deal with so much pain usually I try and rock back and forth (physically rock) to try and deal with what I’m going through, but I feel guilty when in bed my hubby is sleeping to rock as the whole bed moves and can make him feel sea sick. My hubby bless him puts up with a lot from my Dystonia and for that I’m glad I have such a great hubby and life friend all in one. Dystonia is a lonely place and just knowing I have loved ones family and friends makes a big difference. I know I don’t say it enough I love you all and thank you for being here with me in Dystonia Hell.

A walk down the road

On Saturday I went for a walk down the road which would usually take 15 minuets to everyone else took me an hour but i done it. I booked a new tattoo for Dystonia Awareness Week but the earliest I could get it done is Friday 17th May (I know its going to be done outside the event but I couldn’t help it) but that hour walk has a penalty and I am paying for it. Since Saturday afternoon my left foot has done nothing but go tight and spasm (once when I told a doctor about my spasms he said all I had to do to get rid of it is smile that technique don’t work for me). The tattoo im getting is a blue ribbon with Dystonia Awareness.

I have enjoyed taking part in the Dystonia Awareness Week as all my colleagues and people I meet on the train have stopped and asked why the blue hair and nails. So I have told them all about my condition and the normal thing I get told is always ” I’ve never heard of Dystonia”. Which makes me sad because this condition needs to get recognised more and easier. My local GP had never heard of it so when I started seing her I gave her loads of pamphlets on Dystonia which she is quite thankful.

My Sister

This is my sister Sam

On a good note for this week my little sister is up visiting the family as she lives in Devon. When she visits its always special as when we get together it brings good memories with young and carefree thoughts. But now a days we talk about silly memories and what is our recent tattoos. Gosh I love my Family I know i have them for support.

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.