Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘internet’

New Adventure

As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up.  At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do.  In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits.  I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.

A £400 drop in my income was quite significant as you can imagine.  So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.

So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.

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Unpredictable but Not Alone.

Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.

Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.

Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics  brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.

On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.

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Have we found stumbled across the cause??

Whilst sitting in a waiting room the other day my mum stumbled across an article about Lyme Disease. Lyme Disease is carried by some ticks and can be transferred via a bite. Later that day my mum did some research about the disease after remembering that I had been bitten by one when I was six up in Scotland, and the area is known to have ticks carrying the disease.  When reading through the symptoms she found that the majority of medical issues I have had through out my life fits with Lyme Disease.

Lyme Disease can cause a majority of problems. In late stages of the disease neurological problems can occur such as muscle spasms, memory loss, twitches etc and can cause Dystonia. I was never tested for Lyme Disease at the time as my parents did not know of the condition. The tick was attached to me for 24 hours and I developed a large rash afterwards. Testing for Lyme is unfortunately not accurate. The tests can result in many false positives and false negatives, some Lyme patients have been tested over 5 times before they got a positive result. The test is only about 30% accurate.

I visited my GP this morning with my mum to discuss this with him. We went armed with information from medical sites, and prepared to fight for a test. Amazingly we did not have to fight! My GP listened to us carefully and decided that instead of ordering the blood test he would start me on a high dose of oral antibiotics instead. I am to take these for a month and see if I get any improvement.

From what I have read if you have late stage Lyme Disease IV antibiotics are the best line of treatment and this goes on for several months. Often antibiotics do not show any positive results for months, in some cases it has taken up to a year. I know that I am unlikely to have any improvement on just one course of antibiotics and that I may have to fight to get another course of them, but I am extremely thankful that he has agreed to put me straight on them.

The information I have read is extremely interesting and whilst there is a chance that I do not have Lyme Disease and that is just a coincidence that my symptoms through out my life fit so well, I cannot help but hope that we may just have stumbled across the organic cause for my Dystonia.

 

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