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

Posts tagged ‘facebook’

Making The Most Of This Life One Spoon At A Time

My list of chronic conditions is an ever growing one; Dystonia, EDS Type 3, Non-Epileptic Seizures, Postural Hypotension and more! The list of hospital appointments is just as long. As I was diagnosed with each one I felt very much as if I were being forced to pause and take a step back in life. Almost as if I had no choice but to fail at achieving my goals. That may seem over dramatic, but it was a very real, very overwhelming emotion. Learning to accept life as spoonie was and still is a challenge. As I have mentioned before I have developed an attitude of watch me achieve everything you tell me that I won’t be able to. I shall achieve and aspire to all my dreams.

When I was exploring signing with my publisher I noticed that in their facts and questions page that they recommended if you were ill, waiting until you had recovered before going down this publishing path, because it is hard and a lot of work. Now obviously this is referring to recoverable conditions, hence why I skipped over it.  For my novel to be published I have to achieve 250 preorders, otherwise it won’t be able to go ahead (https://www.britainsnextbestseller.com/beta//books/?id=55). So for the next six weeks I have to put a lot of work into advertising and self-promotion via social media. Self-promotion may sound like an easy task but when one eye isn’t working and your body is dodgy anyway you tire easily. I know many of you know the feeling. This is when I adore Facebooks scheduled post function, it’s fantastic for when I need a quick break.

The next six weeks are going to be manic, and nerve wracking. However, it’s also exciting. I’m keeping my fingers crossed that I can achieve, despite everything , and manage to hit the 250 requirement! If you are a love of fantasy then you can order my debut novel here https://www.britainsnextbestseller.com/beta//books/?id=55

thumbnail_Regan Final Cover (2)

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Recovery & Sensation Overload

It never fails to amaze me just how long my body takes to recover from illnesses and accidents these days. Pre-Dystonia I was one of the those people who always had some of thing going on be it sinusitis or a broken bone, but I always bounced back. I fell and ended up in the hospital a week and a bit ago, and yet I still don’t feel back to my usual dysfunctional self.

Many Dystonia sufferers have informed me if they get an infection or have an accident it takes them longer than most to get back to their selves again. So I know I’m not alone, but its irritating. I’m still sore, tired and my spasms and paralysis are being triggered more than usual. I know I sound grumpy! I do not mean to, but lack of sleep and some new sensations in my legs have set my teeth on edge. At least I know I shall sleep tonight after todays Reflexology session.

A couple of days ago this new sensation hit my legs (knee down). It’s extremely hard to put it into words exactly what it feels like. It sort of feels like sharp pins and needles mixed in with a numbing sensation. I try my best to distract myself but the sensation is rather uncomfortable. Part of me wishes that it would hurt enough that my brain would disconnect from my legs so I that I would not be able to feel it just for a little while.

On a far more positive note I would like to thank the lovely people who have nominated my blog and Facebook page for a WEGO health activist award. It is extremely touching and uplifting! I have had a number of people ask me how to go about nominating me, I put it on my twitter and Facebook page, but for those who have not seen it, here is the link http://awards.wegohealth.com/ .

Blog Birthday!

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!

 

Summer, Spasms, Stories -I need your help!

In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.

Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.

My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.

Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.

If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either  dystoniandme@hotmail.co.uk or here https://www.facebook.com/dystoniajourney .

 

Blissful Days!

I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.

I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.

If you would like to help me raise money for the Dystonia society please click on this link which will take you to my just giving page http://www.justgiving.com/Rebecca-Moller1 .

And if you would like to join in with the Go Blue for Dystonia movement then either dye you hair blue or wear something blue and take a picture of it and post it on the following Facebook event page link https://www.facebook.com/events/450399491712134/?fref=ts

 

The Go Blue Movement

A little while ago a lovely woman called Rebecca Sharp who lives in America dyed a section of her blue to raise awareness for Dystonia (her father suffers from the condition). I thought this was a fantastic idea and we got talking. We have managed to make it into an international movement with many people agreeing to take part to raise awareness for Dystonia.

Dystonia Awareness week starts tomorrow (Saturday May 4th) and runs until Sunday 12th May. The idea is that during this week people either dye a section of their hair blue (you can even spray dye it) or clip a blue extension in, to show support for Dystonia and raise awareness. It is really easy to get involved with and a Facebook event page has been set up which you can easily join, and you can share photos of your blue hair in! The page also has links for those who would like to donate to either The Dystonia Society (UK) or the Dystonia Medical Research Foundation (USA). Both of these charities do fantastic work for Dystonia sufferers however they are in need of funds.

It’s an easy and fun way to raise funds and awareness and I urge you all to get involved!! Every person who joins in makes a huge difference. So join in with The Go Blue Movement! https://www.facebook.com/events/450399491712134/

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