Carer, Just wobbly life, Uncategorized

Never underestimate the meaning of  – a shed

This week has been significant in a good way. It has been one to write on the calendar – worthy of remembering. After 9 excruciating years, my husband has a shed. It may seem nothing to many but to us it is the final piece of a puzzle to starting a fresh. Putting a line under the crap that has gone before and a long with ‘The Pledge‘ put down roots and a routine to ground us on low spoon and emotional times.


My husband has always had access to a shed or workshop, to tinker, mend or create. It was his place to go to clear his thoughts, release emotions and relax. He is naturally creative and this was his outlet. Suddenly in one house move it was gone. Promises to have a replacement were broken and delayed. Mainly because of finances. Since he became my full-time carer it has been evident he needed a shed more than ever. Somewhere he could go to relax and to be himself rather than a husband or carer. He had tried other ways to have him time but there  has always been a big issue in his mind the guilt  of  being a way from me and worry of what he will come home too. This means the hobby is counterproductive. Not sure why he doesn’t trust me to be alone  (looking at the bruise collection on my legs and recalling the burnt saucepan from my attempts at booking eggs).

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Chronic illness not only robs the sufferer/fighter of themselves and the lives they expected but does the same to those close around  them. It is nasty like that. We are hoping the shed will give some of him back.

Just need to work out how to afford to do the work bench and other bits he needs to do stuff in there. But for now he can drink tea/beer  in there and dream of his perfect space.

Already it has given him a much-needed boost and hope for the future.

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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!

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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.

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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.