When you have a chronic illness, you can never tell how you will be feeling day to day and so Christmas can be a difficult time.
Autumn/Winter is always harder anyway as the cold and damp weather can exacerbate pain and the dreary and grey days can also cause depression to be more problematic.
I have a love hate relationship with Christmas!
I love the celebration and I love to give gifts although this year finances are so tight that we have cut right back. Of course I love the food, I mean seeing me in a photo tells you I love my food.
But Christmas always causes a flare up!
So it takes some planning and thought to minimise the flare up of pain and fatigue caused by a busy Christmas.
Last year Christmas Day was just me, my wife and our eldest daughter and Boxing Day we arranged to have family over. We kept it to a minimum though as too many people, too much noise can trigger hypersensitivity and brainfog and so it was us, my youngest daughter, her partner and their 2 children, my wife’s mum and step dad and her dad and his wife.
But that then caused problems when we posted a photo and a family member who wasn’t invited was upset at being left out!
We had explained before hand that we were not inviting everyone because of my health, I thought that was accepted and yet it then started to be an issue.
People think I am unsociable and I guess that has happened as my health has gotten worse, I used to be an extrovert and loved parties and family gatherings but poor mental and physical health means I can’t handle it any more. I am not unsociable I am just unwell!
If we had room, if we had a property where I could escape for a period of time, then my wife would have everyone over. You kind of hope that people understand but clearly they don’t. I guess it is hard to understand what it is like unless you or someone very close goes through it.
This year we have set Christmas Eve aside as a day where we see no one, this will give me the chance to rest up fully before hand.
Christmas Day is with my mum, her husband and his son and his sons 10 year old son and so it shouldn’t be too bad and if I feel unwell I will escape for a lay down.
But Boxing Day, wow Boxing Day.
We have thrown caution to the wind and we will have a house and a half full!
I will wear my Flare Audio ear plugs from the start, they just take the noise down to a point where I can still hear but it takes away the mind scrambling multiple conversations in the room out.
We won’t have music on, even background music with the various conversations will leave me screaming inside and trigger hypersensitivity, although that will happen anyway.
Once I am hypersensitive, everything becomes a problem. Food tastes different and my sense of smell becomes heightened and can make me feel unwell, noise starts fry my brain and all of this is too much.
I then start to (so I have been told) look like I am pissed off and grumpy and people then think I am unhappy with them. The truth is that I am just struggling and trying to cope with an onslaught of noise, smell and unable to enjoy the food because everything tastes metallic and weird.
What I should do is say “NO” and minimise everything to avoid the following flare up that will leave me feeling very unwell for at least the next week.
This isn’t possible when you have a family, they have all already suffered enough because of my physical and mental health, they have either missed out on social occasions or had to go without me.
So I make sacrifices, I suffer what is chaos and torturous to me but fun for my family.
So am I looking forward to Christmas?
Yes and No!
Every day I wonder how I am going to get through the day and so throw in visitors and the associated noise and it is very very difficult.
Do you just accept that a busy Christmas will cause a flare up or do you take steps to minimise everything to avoid a flare?