Just wobbly life

Crashing down with a bump!


After 3 amazing weeks of having a house full of laughter with in-laws,  things came crashing down when reality of chronic illness and limitations raised there ugly heads again. The rollercoaster of emotions in the family unit is the hardest thing to deal with.
Having visitors is spoon consuming and takes its toll physically but the fun moments and experiences make it completely worthwhile. They were understanding of the need for siesta, rest days and being slow.  The help they gave and emotional support for my husband was invaluable so a raw void has been left with them returning to their lives. You don’t realise how deeply you miss them and how much nicer life is with family close until you see them every day.

Loneliness is a difficult  issue to deal with and is rife in the Spoonie community and their carers. Solutions are hard to find when health obstacles, shyness and financial considerations stand in the way. It isn’t as easy as find a hobby or go places. Medication timing, fluctuating symptoms, accessibility and money restraints along with lack of self esteem make it a seemingly impossible  mountain to climb. We need to try somehow.  But for now we need to remember the good times of beach trips, sloe picking and dying hair purple as well as prepare for their visit at Christmas. The countdown starts here …

A calming day at the sea!
Sloe picking in time for Christmas!
Just wobbly life

Sleep Glorious Sleep!

For years, as for many Spoonies and people with chronic conditions, a good night night sleep has been elusive. I count myself lucky if I have 4 hours straight. I struggle to get to sleep despite my body screaming for it all day and my eyes quite happily dozing on the sofa half an hour before. When I do drift off it is only a couple of hours before my brain cell wakes up whirling with ideas and thoughts. I can have brain fog all day but at 3 in the morning, it can remember all the things it has forgot to do, which need to be added to the neverending to-do list as well as planning all the things I could do. It has the knack of forgetting the body it is controlling (or attempting to) as it brims with enthusiasm for finishing degree and training to be something. It is indoctrinated with the philosophy of Mind over Matter so it thinks it can change the world. This idea is immediately shelved by the time by the time I am up and dressed. My brain cell  retreats back into it’s fog like state for the rest of the day.

When I was off my magic yellows for tests, I discovered the joy of a goodnight sleep again. Browsing through my draft folder I stumbled on this from that time:

“For the last 2 nights,I have slept!!!! Whoohoo 😊 if I could I would have jumped up and down with excitement as well as dance around the kitchen to Chris Evans’. It wasn’t just I slept through the night and more than 4 hours, I woke up refreshed. It was an amazing feeling! I felt awake and my brain was alert. I felt human. I didn’t even mind, I had spent the night, in my dreams, trying to convince my family they needed to collect the  potatoes I had deserted at the top of a steep hill because they were too heavy.  It was all down to being off my yellow ones.”

Now as I am lying here with a snoozing dog and snoring husband next to me , I want to experience that again. I may not be turning into a pretzel as much but I miss that pleasure of a good night’s sleep and the wide awake feeling when everyone else can see it.