Ah the spoonie life, that hotchpotch of symptoms, ailments and conditions that cast us from society to live like some kind of modern day hermit!
So when a social occasion comes along, it’s difficult and made even more frustrating by people not being able to understand or just not caring.
We had a quiet Christmas day planned but my wife planned for family to visit on Boxing day!
I find this hard as the noise and the multiple converstations is literally like mental torture and trying to explain that to someone is almost impossible, they just presume that we are miserable, unsociable and intolerant.
We swap the days we see family around over christmas every year, my wife’s parents are divorced and remarried and so that creates more pieces to the puzzle of social arrangements.
This year my mum escaped abroad and so my wife planned a quiet Christmas day and on Boxing day to invite her mum and step dad and her dad and his wife and also our daughter, her partner and the grandkids.
Of course she knows that I feel the impending doom as soon as it is mentioned, but she understands and so keeps it to as few as possible. We could spread the visits out over a few days but that means more days of me struggling to cope with visitors!
So when my brother in law asked about Christmas my wife explained the situation although everyone knows about my health and she invited him and his girlfriend and kids over on Christmas eve.
I feel bad, I really do. My wife loves to entertain and enjoys the party atmosphere and I hate that my health stands in the way of that.
So on Christmas eve I explained to my brother in law and his girlfriend that I was sorry, I explained why and how too many people makes my health even worse.
Boxing day was crazy, I was told by my wife that if I felt unwell I should escape to the bedroom but I wanted her to have an amazing day and so I pushed on.
I am now in flare up, pain levels have soared, chest pains, fuzzy head and I have no energy, but it is made easier knowing my wife had a good day.
And then social media raised its ugly head!
Yes my wifes brother decided to air his feelings in a comment on the photos my wife posted on Facebook.
In that moment, those photos that she looked at and smiled, were defaced with ignorance and self pity.
So hence the title of this blog post!
Do they not understand or not care?
I know that this will resonate with many of you who live the spoonie life!
I understand that people may not understand as many of us spoonie’s wear a mask. We smile, we hide the pain, the illness and so people assume we are okay.
But you would hope that when people have known you for so many years and you actually take time to explain why we are the way we are, then they would have the decency to understand, to respect that and not to make it even harder by making it about them!
Of course we understand that our illness impacts others and means that like on this ocassion that people miss out on an invite. I am not ignorant to other peoples feelings, however you would hope that they would have the respect to realise that this is a bloody hard life and we don’t do it out of choice!
So now we will possibly have to in future years not have a gathering of family, instead we will have to see them all individually and spread out over many days.
We don’t have a house large enough where escaping to another room is possible, it is a small bungalow and so going to the bedroom to escape only puts me 15 feet away.
So this now means that my wife suffers even more because of my health. We can’t invite everyone and so after this it means that there will be no more gathering like the one we just had.
That saddens me, it was so nice to sit and watch her smiling and laughing and running around making sure everyone has food, drinks and fun.
I shall keep my thoughts about this to this blog post and contained within my head, because I am furious that she was made to look bad on social media, because the truth is that there is not a bad bone in her body.
Merry F###ing Christmas!