Samuel has always been one of my main carers. Since he started taking on that caring role, he has enabled me to live within the boundaries my M.E. has given me. He helped me thrive rather than just survive.
But now he is sick, really sick, and it sucks.
One of the chapters in my third book, A Girl Beyond Closed Doors, was about what happens when the care-giver gets sick, but that was about a case of severe tonsillitis, and it lasted a matter of a few days.
This time round, Samuel has needed oxygen for days as he can’t maintain his oxygen levels. He is in hospital, he can barely eat or drink and is spending most of his time stuck in bed.
I think what’s difficult is that we have found out that there will be no quick fix to this particular bout of ill heath. He is now chronically ill, and his conditions are really disabling him.
He has been complaining of being really short of breath for a couple of months now. He has been to and fro from the doctors and a&e. No one has known what to do. The doctors have been concerned because his body isn’t fighting of infections like it should do, but it turns out that is because he’s been aspirating into his lungs for a long time due to reflux, and now the damage has been done.
He needs surgery, but he’s not well enough for surgery. The surgery would help prevent damage, but his breathing makes it not safe to do the operation. It’s a catch 22. A constant vicious circle.
So now I’m suddenly having to make lots of decisions. I’m having to push my health to the extreme because the doctors won’t speak to me on the phone. I’m having to force myself to get to the hospital to speak to them and explain basic things like if he can’t have enough drink or food, then he needs intravenous fluids or he’ll become dehydrated.
I’m having to look after our two children. I have to listen as my four year old cries every evening that’s she’s missing her daddy.
I have to put their needs above mine, knowing that the crash is inevitable and the fall out will be costly. But what choice do I have?
I know that the mould and damp is making Samuel’s health (and all of us) much worse, but I can find no way out of the situation. The respiratory doctor has confirmed that it will be adding to the problem due to the length of time he has been in the damp house.
Even when he does come home, if he gets another cold, then this will happen again. It will flare, and our lives will be turned upside down yet again.
I know I’m incredibly privileged to have the family support I do and to have my mother-in-law staying with me. But this feels like a lot to deal with. The stress levels are constantly high.
Even whilst writing this, there has been another backwards step as I’ve just found out that Samuel’s oxygen levels have dropped again. He is now on eight litres of oxygen.
It would just be so nice if I could have some form of break from this rollercoaster. I am holding onto the light at the end of the tunnel.
Soon I will be back fighting, and I will rise from the flames, like a phoenix from ashes. But for now, it is hard, unbelievably so, and I’m just trying to keep on keeping on the best I can.
