Its May, yes I know like already ? How? Parts of the country still have snow.
Anyway somehow we are here and May is M.E Awareness month. M.E or its previous name CFS ( Chronic Fatigue Syndrome) or its previous previous name was Yuppy Flue, but for today we will just use M.E to save my fingers and brain exploding.
Whats it got to do with Karoove and crafting ? Well I was diagnosed about 9 years ago with M.E and I can confirm its no picnic or walk in the park. Before I try and explain what having M.E is like I also want to tell you about Conscious Crafties . Its craft site with a difference . All its crafters are people who have a chronic illness, disability or are caring for a loved one.
So what is it like living with M.E? Its often described as having a bunch of spoons given to you each morning. Each spoon will get you through an activity. So a shower = a spoon. Breakfast = another spoon etc. Now that’s all fine and dandy but you don’t get enough spoons to do everything you need to in the day. You never know how many you are going to get each day either.
The way I describe it is that its like living with a old mobile phone battery. With the nice shiny new batteries in your phone you can do lots of things. Look at apps, text and take pictures. Even right down to one bar on the battery. Then when you plug the charge in it doesn’t take long and you can use the phone as it charges. A new battery is how normal people live.
People with M.E don’t have a new battery, we live with a very old battery and a very dodgy charger. It never goes above one bar and if you try to do more than one thing it just stops working. Plugging the charger in to charge takes forever and still never goes above one bar, that’s if the charger is working though. And when its charging there isn’t enough power to do anything else .
So you get we have no energy but that’s just the half of it. We get brain fog. This makes even the simplest of tasks
hard work hilarious as our conversation is full of thingies, whatamacallits and dodas. Its frustrating, especially if its constantly pointed out.
Then there is the pain. You know when you get the flu and every single thing hurts, even doing nothing hurts ? Yep we have that most days. But we know that a lemsip and a few days in bed wont make it better. We know there isn’t light at the end of the tunnel and we will be waking up every single sodding day feeling the same way.
So M.E isn’t fun. It’s tiredness beyond your normal tiredness, its painful and confusing. Its also belittling as you explain to someone that no a little nap wont make it all better. That no a walk each day wont get us ‘out of it’. Don’t you think that we havent tried that? Do you think we really like living like we have to? There are those who are bedridden but there are also those that are supposedly fit enough to work. Well we might be today but M.E is unpredictable and tomorrow is always different. Not to mention finding a boss that is understanding.
I know I am one of the very lucky ones. My boss is understanding, I can work part time, my other half is understanding and looks after me impeccably. But even I look at my craft room and know I haven’t go the energy some days. So how all these wonderful crafts at Conscious Crafties get made is truly amazing. Now go over and have a look. Gooooo