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

Posts tagged ‘awards’

5th Blog Birthday

Happy Birthday Dystonia and Me!

cake

Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources  I have come  to know and trust.

When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends  I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.

Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.

Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.

Here’s to another 5 years.

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Dealing with Dystonia in Day to Day Life

The last few days have been rather interesting and positive. We have upped my Gabapentin even more, so that I am now taking 900mg three times a day. The reason for upping was a) to try to counter-act the tremors that had started in my leg, arm and head, b) I was intrigued to see if an increase dose would help enable my attempts to get back the ability of walking I had before the unfortunate incident on New Years day. I find that when it comes to increasing my does of Gabapentin, it is necessary to do this in baby steps. I am lucky that the only side effects this particular medication causes me, is when we increase the does, and even then these effects only last 24-48 hours.I find that an increase in the does, no matter how small, turns me into an irrational weeping wreck! I feel extremely sorry for people who encounter me during this. I am not going to up it any more for a while, as I do not want to get to the highest dosage and then find that it is not giving me any more benefits than the original dosage had. I do think that whilst the increased dose has not stopped these tremors, it has decreased them significantly, which is a huge relief! I have also received a letter from Surgical Orthotic’s with a date to seem them! I am hoping they will make me a brace to help me deal with the Dystonia that is affecting my leg! I am really looking forward to this appointment!

As many of you know, I had my last lot of Botox treatment for Ormandibular Dystonia back in January (on the 15th I think). Previously Botox has worked amazingly well for me, which led me to be rather naïve and presume that this would always be the case, or if did start to be less effective it would be later down the line after a few years of treatment. However my last treatment course only lasted 8 weeks, and this course seems to be heading the same way. I think it has been around 5 weeks since the injections and yet my little Dystonia alien is already trying its best to play with my jaw. Yesterday morning, just eating my breakfast set my jaw off into a spasm that caused the jaw to physically deviated (I am hoping this was just a one-off). Within seconds I went into one of my Non Epileptic Seizures, and then a few moments later I had one of my ‘silent’ Non Epileptic Seizures.

I have made a little of note of this, so that I can talk to my Consultant Neurologist about how quickly the Botox is wearing off. I know from his letters that he injects a lot less than my maxiofacial Consultant did, so I am going to ask if an increase in dosage could be considered, or if he can suggest anything else that we can do.

Last night I attended my pain support/research group, which as usual was a bundle of laughs! I entered feeling very stressed due to the fact that I  had my emotional imbalance from the Gabapentin dosage increase going on and the cold had set a spasm and tremor off in my right arm/ hand and my head. However by the end of it I felt full of energy, was laughing hysterically and was so relaxed. I even lowered myself out of my wheelchair onto the floor and did all the stretching exercises and partner exercises with them. This support/research group really does do me the world of good!

A few weeks ago, I decided that I wanted to lose some weight, get fit and just generally try to keep myself healthy. A friend, who also has Dystonia, recommend finding myself a Personal Trainer, so I rung around all the gyms in my local area explaining what Dystonia was and that I also suffered from Non Epileptic Seizures. Many of them literally freaked when I started explaining it to them, which I can complete understand, however I eventually found someone who was prepared to take on my neurologically faulty body!

After meeting him on Monday we decided it would be best do sessions from my home, he then came round to assess my house and what I was able to do today. I must admit I was amazed at how well my body behaved!!! My arm had the odd moment, as did my eyes, but overall it was great. I was able to do so much more than I had originally expected to be possible.

Things are really looking up at the moment! I am adjusting to this ‘new life’ and learning new ways to approach things. I am slowly building confidence back up in myself, and don’t get out of bed everyday terrified of my body. Instead I get up with a can do attitude, accepting that my little Dystonia alien may make things difficult for me, but they are not impossible!!!

Lastly, a massive thank-you to everyone who voted for me in the WEGO Health awards. I was up for three awards, however I have not made it through to the finals, but there is always next year. It meant so much to me that so many of you nominated me!!!  So Thank-you!!!

 

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