Functional problems. That’s a word I use for the sort of problems that I deal with everyday.
I got the word from the phrase ‘functioning addicts’ i.e. people who are addicts but their lives run around their addictions.
It’s the everyday problems that having CFSME produces, my home, my lack of money, heat or eat, fuel poverty, etc etc run in the foreground and background of my life all the time that I say are functional problems.
They never go away. they rumble away to a greater or lesser extent.
Sometimes there’s an emergency like slicing my finger open and healing from it as I did on Sunday, that’s not a functional problem but as the week has wore on and I’ve had to visit my GP to check how it is healing, it’s become one.
What happens when someone you are close to needs help, does having CFS ME prevent you from being able to do anything for them?
Twice in the last 72 hours people that I am close to have needed help. The two situations were different and involved different people but they were the same for me, because I’m the one with CFS ME.
As they asked for help my mind was filled with thoughts like:
“Can I help?”
“I want to help.”
“How much can I help?”
“If I do help will it make my CFS ME worse?”
“How will it make my symptoms worse?”
“Am I prepared to do this knowing it will make my symptoms worse?”
“OK. I can do this…..but I’m worried I’ll be pushed to do more than I realistically can do. How do I deal with that?”
“This means enemy adrenaline will kick in again while I am with them and afterwards.”
“What is my limit?”
“How can I help and stick to my own line in the sand.”
It was refreshing and unusual to get out of my own life for a while, feel like I was doing something that was about other people’s lives for a change and connect with their stuff rather than only functionally living mine.
It also feels really good to be able to help them and reach out.
But there was a point that I had to call a halt and take care of myself.
I realised something had grown from living with and understanding my functional problems with CFS ME – the importance of protecting my night time sleep.
One person asked if they could stay in my flat with me, they were very upset. The other suggested I stayed with them, to help them if they needed to make an emergency dash to the vet.
I was prepared to be with them, prepared to spend time, prepared to listen, prepared to offer help and support, but when it came to changing how I sleep, I drew a line.
Sleep is the key
I haven’t always understood how important getting a good night’s sleep is to helping with my overall CFS ME symptoms.
It is something that a lot of people who have CFS or ME talk about but it took a long time for me to get there.
A long, long time, quite a few sleeping pills and other medication to help me sleep through!
Sleep is so very, very important. I have a sleep routine that I stick to and so no, my friend couldn’t sleep in my flat overnight and I also didn’t sleep on her sofa even when she pleaded with me to stay.
My family member who thought they’d have to go to the emergency vet overnight and was asking me to babysit didn’t need that because me and my sister HS and her husband Mr S persuaded them to go in the evening emergency vet instead.
We worked out a plan of action and I was relieved when it happened, because it protected my sleep too.
It was hard to ignore both of their upset, pleading expressions and walk away from them knowing that they were asking for more.
“I have to go home. If I don’t get a good night’s sleep I risk my health. I’m sorry I can’t help more, I’m here for you, but you will be OK and I’ll speak to you tomorrow morning.”
In both situations I went home and slept as I do every night, in calm and quiet and yes, I feel really tired this morning, but in the past I wouldn’t have done it this way and suffered so much more as a result.
Oddly enough in both cases the next morning they said that their situations had got better. If I’d done what they’d wanted from A to Z and interrupted my sleep, I’d have been so, so much worse.
I seem to have found out what the line is in the sand, without even knowing I’d found it.
Getting a good night’s sleep is key.
© Lindy 2015