On Thursday my daughter turned 21 and so today (Sunday) we are having a barbecue with family and friends, its something that years ago I would have enjoyed but now as I sit here, I’m dreading it.
The past week or so I have not being feeling very good, my pain levels are up, fatigue and brain fog has set in and it feels like something else is wrong, my wife has said to go and see the doctor but I can’t say to him “I feel like something is wrong, but I don’t know what”, I can picture his face.
So today is going to be tough, in four hours our house (garden) will be filled with people, there will be music and multiple conversations and when I’m foggy I struggle with so many things happening at once. I will also have to face the questions or comments about my health, you know the ones I mean. My wife has said that if I feel rough, I should just go to the bedroom and watch television and I expect that might happen because even if I do survive five hours, it will leave me feeling very unwell and it will take the next week to recover.
I used to love occasions like this, I was extrovert and would be the one telling jokes and messing about (embarrassing now I look back), but since I have been unwell I have grown to dislike such occasions and even a small gathering at our house feels like an invasion that leaves me exhausted. I wish it didn’t because it affects my family and even though my wife doesn’t say anything, I know she misses being social and attending gatherings like today.
This is what people don’t realise, illness and disability has a massive impact on you and your families life, it changes you physically and mentally little by little, bit by bit and before you know it, you are living life as a recluse, now obviously this doesn’t happen to everyone who has a disability but it does happen to a lot of people, no one sees it because these people just disappear and are forgotten by former friends.
I’m sat in bed, its 10.20 and my wife and daughters have been up since 7am getting things ready, setting up gazebos and getting the barbecue out. I have to sit and do nothing, trying to conserve as much energy as possible. I’m preparing myself for what seems like a battle when it should be fun and a happy gathering, I will put on my game face because I can’t show how I’m really feeling, I can never let anyone see that I’m in pain. That is something I know that other people who are in chronic pain do, it feels like you are holding your breath and finally when the last person leaves you relax and its exhausting and I guess that’s why people have a hard time understanding my pain and disability, they don’t see me for ages and when they do I have a smile on my face, “he looks okay”.
Well that’s all, wish me luck.