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

Posts tagged ‘cake’

Tea Party Fundraiser

Saturday we held our Tea Party fundraiser for the Dystonia Society. The day was a complete success with many more people than last year showing up which was an incredibly uplifting sight. My body was still playing up a lot, this meant that I had several pain triggered seizures as my new leg spasm was aggravating the torn ligaments in my knee. However I view having these spasms in front of everyone as a complete positive, they got a good look at what Dystonia can do you.

A good family friend had offered to make a cake to raffle off for the occasion. She is very talented, and the cake looked so delicious! 

Our house was packed all day long which was amazing to see. The Dystonia Society had sent us lots of useful leaflets which we had put on display around the house, everyone seemed to enjoy these and it sparked lots of different questions. Raising awareness has become such a big passion of mine, so I was overjoyed at how successful the day was. One of the elements I loved about it was that the people who had come along could also ask members of my family questions and talk to them about it. Even though they don’t have the condition their lives are still affected by it.

In total so far we have raised £425.00 for the Dystonia Society and some more people have said they would like to drop in donations which will boost our total even further. I am so grateful to everyone who came along, it was such an incredible day.

This weekend my cousin David and his friend Sam are running the London Marathon to raise funds and awareness for the Dystonia Society. They are aiming to raise £3000! He was interviewed by his local newspaper the other day, which has raised more awareness of Dystonia! If you would like to read the article here’s the link http://www.thewestonmercury.co.uk/news/seaquarium_boss_inspired_by_cousin_to_run_marathon_1_3533729 .

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Pain Free Celebrations

Todays blog is only a quick one, but I just want to start it by saying I hope you have all had a fabulous Christmas. I have been extremely lucky and spent this Christmas and my 21st Birthday seizure free and with only a handful of spasms! I feel very blessed to have been able to spend both occasions in very little pain, especially as pain is 99% of the time my constant companion.

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Over the Christmas period I have felt the best I have in a long time. Between regular Botox injections for my Dystonia, antibiotics for my Chronic Lyme, and all the other meds thrown in, I have managed to reach an incredibly happy place. I have managed to reach a place where I am not scared to chew my food incase my jaw tremors, where I can speak clearly, where I can brush my hair without the brush getting stuck in my hand. I am in such a different place to where I was last year and I am so unbelievably happy.

Thinking back to last year, and then looking forward to the upcoming year I am filled with hope. So much has changed for the better this last year, and I hope it continues in this way. This time last year I had hoped that I would eventually learn to live with this condition, and in the space of a year I have learned to live with it, and tricks to sneak around it (the power of hot water bottles), I have learned that no matter how hideous things may seem it does get better, that I can have a life.  I have learnt so much, and I am sure I will learn more. In between kicking my Dystonia Aliens butt I plan on having as much as fun as possible.

Incase I don’t have time to blog again beforehand (I’m fantastically busy at the moment :-D) I wish you all a fantastic New Year full of joy.

 

Tea Party Success

Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned up which was amazing and really added to the day! Our house was constantly filled with people drinking tea and eating a variety of cake!

What amazed me the most was how generous people were with their donations, it was really very touching! Lots of people read through the leaflets that the Dystonia Society had provided us with and asked me a lot of questions, this was fantastic as I felt that everyone there was really interested to learn more about Dystonia.

At one point in the afternoon I was shaking my sisters friends hand goodbye when my hand suddenly spasmed. I was slightly embarrassed as I was unable to let go of his hand and the spasm was just getting tighter, luckily he found it rather amusing and said it was fine and wiggled his fingers out of the spasms grasp. This provided great entertainment for everyone in the room and also showed them a glimpse of just what my little Dystonia alien could do.

By the end of the tea party I was completely and utterly exhausted, but over the moon by how much we had managed to raise! So far a grand total of £577.26 has been raised which is mind-blowing!!! Dystonia awareness week has only just begun though and my hair shall be staying blue for the week as part of the Go Blue Movement to raise awareness and funds for Dystonia. So if you would like to help me raise even more money for The Dystonia Society please visit my Just giving page http://www.justgiving.com/Rebecca-Moller1 .

Here are a couple of pictures from yesterdays fantastic tea party!

 

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