Tag: Conditions and Diseases

Posted in Archive, September 2013

Start of Something New

Posted on by dystoniaandme

Happy, on top of the world, ecstatic, over the moon. Put this combination of emotions in to one and that is me now. Today has been a fantastic success. I attended my first day at college and loved every second of it. The lecture today was on Anatomy and Physiology, which was just perfect as I find it an incredibly interesting subject. A lot of what we covered today I had already learned at university so it was a bit like revision, I loved this as I had remembered everything, which enabled me to contribute to the lesson more.

Tomorrow’s lecture is a practical one. This excites me and makes me nervous. I am sure my body shall be fine with it, but as with all things in life you can never be a hundred percent certain especially with Dystonia, hopefully tomorrow’s practical shall put the tiny worries to rest. The four hours tomorrow shall all be practical but from next week onwards the Friday lectures shall be 2 hours practical and 2 hours focusing on business and how to set up your own business. This is fantastic as once qualified I shall be setting up my own business so that I can work from home.

I decided not to attend riding today as my sight has not been great. I have been full of the cold which has caused more spasms. It has particularly been causing an increase in spasms in my eyes. Annoyingly the spasm that has occurred most is the one that causes my eyes to roll up into my head, leaving me blind, the pain of this particular spasm causes me to have a Non Epileptic Seizures most of the time. This happened today at college, thankfully before the lesson started, but reassured me that I was making the right decision not to ride as I would be putting myself and the volunteers at risk. I am looking forward to next weeks session though.

I feel like a ball of positive energy! I am brimming with happiness and full of excitement for tomorrow. Being able to study again is so satisfying and opens many doors for me. In a way I feel normal.

I’m so happy!

 

Posted in Archive, September 2013

Blog Birthday!

Posted on by dystoniaandme

I have been blogging for a year today! I started my blog to help raise awareness of Dystonia and what it is like to live with it. I was inspired to do this as when I first became ill and got the diagnosis I realised just how unknown this condition is among both the public and the medical society. I decided I wanted to educate as many people as possible about Dystonia, and blogging seemed like the best starting point as society use the internet and social media so much.

Since I started this blog I have had many highs and lows, I have fought to get help, I have had many ambulance trips, and experienced so much more. If you told me a year ago how completely different my life would be as to when I started this blog I would have been adamant about my inability to cope with being in a wheelchair and would have been terrified. Now I admit I have been terrified on many occasions especially when the Dystonia spread through my body, and I don’t like being in a wheelchair, however Dystonia has made me a much stronger person and has inspired me to do my utmost to spread awareness .

I knew when I started this blog that I would have to be extremely honest in everything I wrote and not sugar coat any negative experiences as that would be counterproductive. I have tried my best to write an equal amount of positive and negative posts, however Dystonia is an unpredictable thing and it does not care whether it bring tears to my eyes with laughter or with pain. Many blog posts have been hard to write, such as when writing about my legs being affected by Dystonia I found myself in tears.

Blogging to raise awareness is just the beginning. It has been a flicker of light in the bleak unknown that surrounds the condition but if all of you who read my blog, go on to share it on your Facebook or Twitter etc then that glimpse of light shall slowly become a burning torch, which will enable change to start taking place. Change needs to happen so that Dystonia is no longer a condition hiding in the shadows of its neurological brothers. The more awareness there is, the more help sufferers shall get and the more likely it is that a cure shall be found.

I would like to say big thank-you to my family who have put up with disruptions at all times of the day and night, care for me, support me, and keep me strong. I don’t know how I would cope without you all. An especially big thank-you to my mum, who has been my rock and has put up with my tears and frustration, I love you so much!

I want to also say thank-you to all the sufferers who have supported, given me coping tips and kept me sane! Especially Karen, Shannan, Andrea and Pamela – you guys are amazing!

 

Posted in Archive, September 2013

Craft Fundraiser for Dystonia.

Posted on by dystoniaandme

Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock my craft supplies – I love to crochet. The fundraiser was busy all day which was fantastic and over £200 was raised for The Dystonia Society.

About halfway through the day I got the opportunity to give a speech on what Dystonia was and what life with it was like. I was slightly nervous that I would be useless and just woffle, but have been reassured the speech was ok 🙂 . I drew on my experiences of living with generalised Dystonia, and whilst I tried to only speak in a positive way, I also spoke in a realistic manner, and sadly Dystonia is not a pink fluffy ball of positivity. I found out afterwards that my speech had reduced some people to tears, which I felt bad about, but it had also inspired several people to do their own fundraising for The Dystonia Society which is incredible!

My church has chosen there september mission to be Dystonia. So they shall also be raising awareness this month which is incredible! I feel very lucky that they have taken on this cause. It was a fantastic day today, and I am so thankful that I was well enough to go down and meet such a lovely group of people.

 

Posted in Archive, September 2013

Finding My Feet

Posted on by dystoniaandme

So after a few days of feeling a bit rough due to a viral infection, I am finally feeling more myself. I try to avoid picking up any illness as much as possible as when I get a bug my Dystonia acts up. It is like my little Dystonia alien waits until I’m feeling under whether to kick it up a few notches and go “Haha, so you want to rest? Well I’m going to distort both your legs, try to rest now!”. My alien really is a pain.

I finally feel like I am beginning to find my feet and learn to live life alongside Dystonia. I have accepted that I can’t live life with it in the background because it disrupts things too much, but I can live alongside it, and ignore it as much as I can. I kept my life on hold for a year, and now I’ve taken it off pause and from next Thursday I am shall be studying again.

In life people define themselves by their achievements and what they have done. I was considering this the other day and trying to figure out what I would define myself as/by. My thoughts flicked from Dystonia advocate, fundraiser, Author (My novel is almost finished), and reflexologist (when I qualify). It took awhile before I realised I didn’t have to choose just one, I can choose them all, as each one of them makes me proud. This last year I could have sat at home feeling sorry for myself doing nothing, instead I decided to try to educate the world on Dystonia – an ongoing task, fundraising for The Dystonia Society (I have raised over £1000 so far), started and almost finished my first novel, and found myself a new career path. I am proud of me!

Tomorrow I am attending a craft fair, where half of what is raised will be given to a Dystonia charity. I am rather looking forward to this. I like to Crochet so it shall be interesting to browse whilst helping raise awareness for Dystonia.

I saw this quote below, which has been taken from one of my favourite Disney films. For me it rings true. The path I am now on is by no means easy, and I struggle often, however it will lead me to where I need to be.

 

Posted in Archive, September 2013

Exhaustion

Posted on by dystoniaandme

My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.

My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.

Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.

I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.

I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.

 

Posted in Archive, September 2013

Basking in Positivity

Posted on by dystoniaandme

The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

Image

 

Posted in Archive, August 2013

Acrobatics

Posted on by dystoniaandme

The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.

Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure.  At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.

This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.

Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.

After all why cry when you can laugh?!

Posted in Archive, August 2013

Tremor and The Fantastic Effects of Reflexology

Posted on by dystoniaandme

Today my jaw tremor has returned, I’m not too pleased about this as it is earlier than I expected it to be, however I am having my Botox injections next Tuesday so it’s only one week of putting up with it. I do look rather silly as I have a baby teething dummy in my mouth to protect my teeth so that the tremor does not loosen any more of them.

I have had weekly reflexology sessions for a few months now and I cannot get over just how much of a positive effect it has on my body. My feet like to spasm in the evening and the pain in my knee and hip joints get bad, this normally means I will be lucky to get more than four hours sleep. However with reflexology I have found that I get between three and four fantastic nights of sleep, which makes a big positive impact on my energy levels during the day which enables me to handle my spasms better.

I tend to have my reflexology sessions on a monday afternoon. The night before the session my sleep is almost non-existent, I’ll spend the night strapped up to my TENS Machine, doing my meditation breathing exercises etc in an attempt to get to sleep. I have even started using rescue remedy night drops which have helped a bit. To go from almost no sleep to the next night sleeping dead to the world is the most amazing experience. If I could afford to have reflexology several times a week I would not think twice about doing so.

I rely on medication to try to suppress and manage my Dystonia. Whilst these medications are essential I would much rather not take them as it’s not good for your kidneys and your liver to be constantly bombarded with them. Therefore having an alternative to help me sleep and deal with my symptoms is such a giant relief as I was very reluctant to go back on to my sleeping medications. When you have Dystonia you are told to try to avoid stress as it can exacerbate your symptoms, now obviously it’s near impossible to lead a stress free life as Dystonia itself is rather stressful. Reflexology is so far my biggest stress reliever, I honestly do not know how I would cope without it.

I saw this quote earlier and fell in love with it, I find it rings very true.

 

Posted in Archive, August 2013

Todays Hospital Appointment.

Posted on by dystoniaandme

This morning my mother and I travelled to Warwickshire to see an Infectious Disease Specialist who supposedly (according to his secretary) treats Chronic Lyme Disease. I left the appointment with extremely mixed feelings. On one hand I was rather disappointed and on the other hand I was satisfied with what he has said he shall do.

At the start of my appointment he made it rather clear that he did not  really believe in chronic lyme and thought that ongoing lyme could be cured with a 4 week course of antibiotics. He also thought Lyme Disease could cure itself…I have not heard or read about this.  After hearing about my life medical history and an examination he informed us that he was certain that I had had Lyme Disease for a few years but did not think that I still had it. However he said that I at least deserved to have testing done. Therefore he is going to write to my GP and have my GP arrange for me to have an IGM (that may be wrong) blood test and a lumbar puncture for PCP testing to see if there is any lyme in me. Lyme disease testing is inaccurate at the best of times and the fact that I am on antibiotics for Lyme Disease at the moment means that the antibodies shall be suppressed meaning a negative result is more likely. I expressed my concerns to the doctor, who admitted this could happen. However I am very happy he is going to ask for these tests to be arranged.

He was a lovely guy, however I am unsure how I feel about it all. I am going to go ahead with the tests. If they come back negative then I shall book myself into the Breakspear hospital and go through this all again. One big positive out of this appointment is that he confirmed our suspicions that I did have Lyme. That there, in my eyes, is the reason I have Dystonia. My neurologist admitted that they know that Lyme disease can cause Dystonia. It gives me some peace of mind to know that there is a reason behind it all. Now I just have to wait for the NHS to arrange these tests.

Today was just a slightly wobbly stepping stone to future treatment. One way or another I will get to where I need to be.

Posted in Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on by dystoniaandme

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up)  was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me.  However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!