I was a long time diagnosed with, and talking about my Chiari malformation before i ventured to ask…”what are the spoons about?” – round here in northern ireland “you’re a right spoon!” is NOT a compliment.
So have discovered the Spoon analogy but still refuse to use it… BUT i understand the concept of chronic pain…everyday pain…deciding whether you have the energy to get off the bed…recovery days.
THIS IS a GOOD DIAGRAM representing invisible conditions.
I don’t have any listed but it covers connective tissue disorders, neurological conditions, brain malformations…even depression.
The easiest answer on the ODD day that you are OUT and met in town , to the question “How are you? improving?”….is “am okay”…but AM NOT OKAY…not in any hour of the 24 hours in any day. But for me am ABOVE GROUND…my new marker of success…and measure of how I am.
- me on the sofa
- me walking with Hazel – my stick
- dizziness…numbness in face, head, fingers, toes, legs.
- eye NOT working to the extent i am afraid it will give up.
- me blogging – to USE my brain – and my spell check now (since brain surgery!)
- me social networking – that replaces socialising…but it really doesn’t.
- my OH shops and drives kids to and from everything
- if you visit i LOVE it…i chat …i feel good.
- the weight gain YET good nails, hair coloured, and an attempt to turn myself out well
- i do homework with my children…my USEFUL and REWARDING function.
- my OH cooks.
With me you don’t see:
- the weakness in my legs
- the fact that today i will do NOTHING physical like walk in town as i am saving my energy to watch my son play a gaelic match.
- that it takes almost until 12.00 to get UP, showered and dressed…and that when i then come downstairs am KNACKERED
- the cocktail of pain and nausea medications my OH has to record in a book so as to check what i can have when.
- the sleep EVERY afternoon that my body needs and takes
- the frustrations of RECOVERY days …where any break in the “nothingness” routine causes days of utter and total exhaustion and increased levels of illness.
- the BASIC level that is vestibular REHAB physio…and that still i can be useless at it.
- the feeling of being CHEATED by your BMI as your intake is so small and yet your body has become non reflective of more than your SEDENTARY lifestyle!
- the son asking me can we have another away day or two as a family while we still have the wheelchair…
- the feeling of USELESSNESS…when you realise your husband is your CARER.
- the feeling of LONELINESS when you look at the fact that the visitors, after the initial weeks post surgery assume you are out and about and forget to visit.
- the feeling of ISOLATION when you miss out an any invitations due to all those you have had to turn down.
- how DEPRESSING this life standard is.
am NOT a spoon.
am an articulate, educated person.
am capable of so much mentally and musically
yet trapped INVISIBLY trapped in a body that has given up on me.
i KEEP trying to be positive but not ease.
invisible disability is NOT EASY.