dystonia, hospital, Just wobbly life

Christmas countdown: The Spoonie Way

It is the run up to Christmas and this year’s countdown consists of hospital appointments. Normally, there are at least two but everytime the postie clangs the letter box, another envelope bearing a hospitals logo appears. Bright Christmas card envelopes would be preferable. I have had rhuemie and neuro check ups already but now dates for gastro, further ones for rhuemie and blood tests for genetics have appeared. I am still waiting for a much needed physio appointment.  Add in the regular blood tests, a dentist trip and visits to the vets, I am counting down the days to Christmas by ticking off my ever increasing scribblings on my now tatty calendar. I could design a Spoonie version of an Advent calendar.

Forget smiley snowmen, there could be tinsel wearing medics or chocolate spoons!
Forget smiley snowmen, there could be tinsel wearing medics or chocolate spoons!

My phone is adding music to the festive activities when it pings alerts of the upcoming events. Maybe there is a way of changing a ping to a Christmas tune. Jingle Bells anyone?*

I remember when my diary was full of Christmas parties and meetups. I would deliberate on my perfect outfit for the festive fun. NowI sepnd my time, weighing up the pros and cons in relation too the medic I am seeing. Forget high heels, red easy to get on boots are the way to go. Dresses are replaced by comfy clothes that are easy to remove and get back on. Times have definarely changed.

The joy of being a wobbly spoonie!

*I think my brain cell is showing it’s lack of sleep.

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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).

eggs

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.