BUBBA’S BLOG #003
WHEN CLEANING IS LIKE MOUNTAIN CLIMBING! BUT YOU CAN STILL RUN A SUCCESSFUL HANDMADE BUSINESS LIVING WITH CHRONIC ILLNESS.
Yes this is another spoonie drama I have to go through and many others with chronic illness will relate!
I literally decided, against my better judgment, to give the living room a quick once over with the hoover! ‘What's so bad about that?’.... I can hear the non spoonies say? Well….
I literally did a quick swoop of the floor, so maybe 5 mins if that, right? (Another fun fact that folks with ME cannot always gauge timelines) anyhoo, I had to stop, even though my OCD was begging me to keep going but my whole body went into post exertion malaise. So this is super common with ME and one of my main struggles. Sometimes it happens immediately and sometimes within 24-48 hours!
What does ME feel like? The main feature of ME/CFS is a type of exhaustion known as post-exertional malaise, 'crash' or 'payback'. This means having flu-like symptoms after exercise/activity and not having enough energy for daily activities.
Research shows that people with ME/CFS have a different physiological response to activity or exercise from other people. This includes abnormal exhaustion after any form of exertion, and a worsening of other symptoms. The response may be delayed, perhaps after 24 hours. Depending on the amount and type of exercise, it may result in post-exertional malaise for a few days, or serious relapses lasting weeks, months or even years.
People with ME/CFS find that activities they once took for granted take an enormous toll on their health. For example, a short stroll, coffee with a friend, getting their child ready for school or catching the train to work, which caused no fatigue before, is followed by unusual tiredness that takes longer than usual to go away.
Link for more info - Credit https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
Right so I hoovered…and now I am out of breath like I did a 15 minute intense HIIT workout!! Why?? My heart was racing and I felt dizzy. My head is still a bit spinny as I write this blog!! I am very fatigued immediately after with my heart racing and breathless. In about 24-48 hours I may even risk a full crash which means I may not be able to move at all for a while. The scary part is never knowing when it will hit and how long it will last. So to me this is a warning that I need to spend the next 24 hours completely rested or the Crash could come!!
I have to admit I used to love house cleaning. I found it relaxing and a great workout, but sadly that has also been taken away from me by my illness. I have given up going on walks and exercise, both of which I loved. The ME and my separate knee disabilities have caused me to give these things up. But fear not, it's not all bad!!
I still have you guys to chat with when I can to help lean on each other, fellow spoonies rock!! Not to mention my small handmade business that I am successfully running despite all this! I have to do it on my terms and not to the level of someone without this type of illness. But I AM doing it!! I love it, every second of it. Melting, labeling, designing, packing orders…I love it all. I do not pressure myself anymore either. 2020 was an insane year for sales and almost broke me, so I had no choice but to pull back and scale down the quantity of products I was making for the shop. I had no choice if I wanted to keep it going. And guess what, that's ok!! If you love something it is not about money right? I mean don't get me wrong, it's super expensive to have a disability and chronic illness, my stairlift alone is insanely expensive! But the passion, love and joy I get from creating my wax melts, designing the labels, posting on social media and getting the lovely messages from you guys after you receive your order is my biggest achievement. If I have to maintain a more exclusive amount of products for now then that is ok. I am still doing what I love but doing it working with my limitations and not against them.
Sadly there are still non spoonies who believe ME is just a ‘yuppy flu’ (donned as this in the 80s and 90s) Yes I know!! Incredible to think that those poor folks who suffered back then were dubbed fakers or dramatic!! That's so infuriating actually. But I hope this article can give a small insight into a daily activity that is taken for granted by everyone that can trigger severe fatigue, malaise and breathing difficulties in someone with ME.
I hope this has made even one of you reading who suffers with ME or in fact any form of debilitating chronic illness including Fibromyalgia which can trigger extreme pain all over the body from a simple hoovering activity can see that you are not mad, you are not alone and yes this is real. The biggest message is that you are sick, not dead and while it may seem impossible, you can still do whatever you want to, just maybe tweek it a little to suit you and your illness.
Please look after yourself and try to rest as much as possible and most importantly do not let others or ‘non-believers’ get you down.
Lots of Love
Bubba x