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| My Spoons |
One of the hardest things to answer when falling ill is the question "how do you feel"?
The dilemma is.... do I answer truthfully and possibly embarass everyone in the vacinity or do I make a joke to make everyone feel comfortable? I can safely say that most people, including me opt for the latter.
This happened to me last week and, not for the first time, I felt frustrated about the lack of understanding eventhough I knew it was my reply that caused it. By chance the next day I stumbled onto the "Spoon Theory". It was amazing, like a weight had lifted from my shoulders because for the first time I had something tangible that people could understand. I wont go into to detail as I have added a link to the video below but it is a fantastic view on how to explain how you feel and, more importantly why.
Its all about the choices we make and the difference between being healthy or ill is broken down to the choices available and those we take for granted until they become out of our reach, for instance;
My friend said we should go for a coffee, to which my husband and I replied would be great but there were a few things to be considered
1. how would I get to the cafe?
2. how far was the cafe from the car
3. was it near a local ER, just in case?
4. did the cafe have shade?
5. how was I going to feel or be impacted from going?
All this had to be considered before grabbing a coffee with friends.........before HUVs I would have been out of the door without a backward glance. This illustrates that if you are ill/imjured you have to consider the impact of every choice you make. Christine Miseranino captures this perfectly in her theory.
On a more personal level things have been moving along ok recently. It has been 8 months since I fell ill and we are, for the majority of the time, ok. It has been the school holidays here and the weather has been unseasonably warm which the children have loved but it has been problematic for me.
I have been told that the antibodies are effected by sunlight. I have noticed heat also impacts the severity of the side effects. I have increased my meds by another 50% which has created some reactions but nothing I cannot deal with, fingers crossed. My weekly blood tests continue and so far all is ok.
I am lucky that I have a wonderful friend and cousin who has been taking my little girl out to the local parks otherwise she would have been stuck indoors with me. It is at this point you realise, once again, how dependant you are on others, and how guilty you feel because your family have to change their activities to acommodate your condition. I have recently borrowed a wheelchair and am plucking up the courage to use it. Not that using a wheelchair is physically such a big deal but psychologically, the step to accept that you need a wheelchair to be able to do everyday activities is enormous. I will let you know how I get on as I have arranged to go clothes shopping in the next couple of days.
Please read the Spoon Theory, friends that have taken the time to do so, have found it can be adjusted to consider any illness, injury or circumstance.
In the meantime I hope you all have a great week and will return to the Blog in the next few days.
http://www.youtube.com/watch?v=jn5IBsm49Rk
The Spoon Theory written by Christine Miserandino. by ButYouDontLookSick.com
