dystonia, Just wobbly life

What a night, what a weekend!

Last weekend was definitely an “up” moment in wobbliness. Hubby and I went to see David Gilmour at Royal Albert Hall! The gamble of buying tickets so far in advance paid off – THANK YOU BRAIN!

Buying tickets and arranging nights out have become a big no-no in this household.  Not only is money tight and not to be wasted, experience has taught us there is a high chance  dystonia or vasculitis will cause  the whole proceedings to fall apart at the last moment. Whether it is because of pain, extreme fatigue, spasms or hospital admissions.  As soon as my body realises I want to do something exciting and fun, it hatches up a plan to play up like an irate toddler having a tantrum. All the excitement you feel and hopes you have are smashed. You are left feeling fed up, angry, envious of those getting ready and enjoying themselves as well as guilty for letting others down. That is on top of wasting your money. Tickets for theatre and gigs not transferable or refundable.  Selling them online is near impossible as there is not much demand for wheelchair tickets. Nights out as a spoonie are organised with  precision not on last minute whim. I have lost count of how many nights out have been cancelled over the years.


This time my brain allowed me to have a night to remember. David Gilmour is my husband’s hero and I wanted him to experience seeing him live again. We saw him in 2006 when my wobbliness was just a little wobble in comparison and I could  limp through London and the underground system. How things change.

The Royal Albert Hall was fantastic, the architecture fills you with awe and they provided disabled parking directly outside the door we entered. One bonus of being wobbly! No hassle of managing the wheelchair through the city and our sat-nav found it without a hitch (getting out of London was a different story but that did not matter). Inside the area was easily accessible and close, unlike someplaces that are like a rabbit warren to get you to your place. The seats gave a perfect view of the stage and what a show! David Gilmour was amazing and I feel so lucky to have gone to see him. I feel very grateful that my body behaved as well as it did. It did not matter my hands curled up and my brain could not work out how to get them to clap or stand when everyone else did – I was there and I can hold on to the memories to be recalled for a lifetime. #100happywobblydays

Now I have to work out how to convince my brain to behave for Christmas.

Just wobbly life

100 Days of Happiness

Browsing online and getting my head around Twitter, I came across #100happydays challenge. For 100 days, you take a photo of something that makes you happy and post it either on social media. It seems so simple but I am sure as Autumn changes to Winter, some days it will be hard to find an image, even for the most optimistic person. I watch and read the news, listen to the radio, and can not help feeling upset, anxious as the world is changing dramatically around us. Many of the changes are beyond our control and it is easy to lie awake at night when the house is quiet, panicking about the ifs and maybes. This project is just what I need to rebalance my thoughts.

So I have signed up, eager to try and appreciate  the little things in life in an uncertain, at times scary world.

Happy bag

My first happy picture

My first #100happywobblydays picture which is posted on my Instagram page https://instagram.com/wobblypip/ is a Happy bag given to me by my Aunt. It will encourage me to see the good things on low days and remind me to carry on. It is also 100 days until Christmas – a perfect way to celebrate if I can succeed!