Welcome! Did you know that May 12th was MECFS International Awareness Day? With that in mind, during the month of May, I’m joining in on Instagram with other chronically ill people on the below pictured spoonie challenges, posting once daily as able, to spread awareness on a variety of MECFS topics. In order to try to pace my energy as best as possible this month, while sharing awareness far and wide, I’ll be bringing that content over here to WordPress each Tuesday this month. This posts includes the fifth through the twelfth below.
Today’s prompts: What you have learnt & If I could tell you one thing (about MECFS)
I’ve learned volumes, but one thing that comes to mind is that I’ve learned how to say no. No I can’t do that for you, no I can’t go, no your medical advice to exercise is incorrect, and I’ve learned to do it without feeling guilty. I’m now a reformed people pleaser. 😁 Somedays are easier than others but it’s been an invaluable lesson and it leads me to the one thing I would tell someone newly diagnosed, which is the importance of pacing.
Pacing IMO is vital (pacing is a management strategy to help ME/CFS patients limit the number and severity of relapses) with this illness. Every activity, every exertion of energy, mental or physical, needs to be thought through. Sometimes over-exertions are necessary for doctor’s appointments, or visiting with someone you’ll likely not see again soon. You decide what’s worth it, but you’ve got to pace to keep your health as best as possible. It doesn’t always work and there’s so much more to it, like monitoring your heart rate, but it’s the best way I’ve found to get the most out of each day. If you don’t pace you’ll likely end up in a cycle of boom and bust (over exertion -> crash/flare). Pacing helps lessen the crashes so that over time things feel a little more even, day to day. Considering each day feels like a rollercoaster of symptoms, a little calm is a welcome relief.
Today’s prompts: Current View & Self Care
Shhh 🤫 don’t tell me who wins. 😉 I’m still reeling from the voting off of Henry (his little ties…adorable).😁 Today’s self care is watching #thegreatbritishbakingshow in snippets to avoid thinking about the heat. Heat wreaks havoc on my #heartrate, as well as a variety of other symptoms, like the current painfully uncomfortable pressure in my head. Everyday with this illness feels like yet another day attempting my best ‘self care’; if I’m to be honest it still feels self indulgent. I know it’s necessary but it comes with loads of guilt. There are so many things I want to do, like clean the house, but the energy just isn’t there. When I was first ill I was recommended the wonderful book, The Mindful Path To Self Compassion. It was life changing for me. Apparently, after taking the accompanying quiz, I was zero percent self compassionate … oops 😬 Over the past several years, I’ve slowly learned how essential ‘self care’ is, not just for people who are chronically ill, but for everyone. Be kind to yourself, you don’t need a reason.
Today’s prompts: Something you want others to understand & Adjustment
Very unwell today. So very quickly to use as few spoons as possible. Something I’d like others to understand is that Chronic Fatigue Syndrome is in no way shape or form simply fatigue. Much like I feel today, you feel like you’ve been poisoned, and so much more. I’m not saying that for attention or seeking sympathy, I’m saying it to spread awareness.
As far as adjustments, with MECFS your whole life is likely to need adjustments. When the human body stops recreating energy efficiently it impacts everything in your life, every bodily system, every mental and physical exertion, everything.
Today’s prompts: Daily Routine & Bed
My daily routine went from shower, work, dinner, homeschool, exercise, and bed to basically just bed. I eat breakfast in bed, and lunch, and often dinner. I paint and write in bed. I used to drop into bed after a long day and then rise early and be off for the day. Now I spend my life in bed. I’m housebound…I can get out of bed on my own usually but to sit or lay anywhere else in my home is incredibly painful. I told my partner recently, think of all the places you’ve been today. You drove to work, went to a coffee shop, talked to coworkers, sat at your desk, went to lunch, drove home, meanwhile I was in bed.
My whole life is primarily spent in the confines of my bedroom. At first it was heart wrenching but over time you begin to accept that this is life, mostly, I still grieve my life and have days where I need my son or partner to take me for a ride to the seaside. To be completely honest though, while I love sitting in the car at the seaside it also stirs up feeling of sadness, because what I’d really like to be doing is walking, toes in the sand, wind in my face, listening to the crashing waves and seagulls. They say if you ask a person with MECFS, “What would you do if you felt better” they’ll immediately tell you of all the adventures they’d love to go on.
For a long time people thought MECFS patients were solely depressed. Thankfully science has proven otherwise. Now hopefully science will also find us treatment and a cure because quite frankly, my toes can’t wait to get back in the sand! 👣🏝
Today’s prompts: What keeps you going & Overwhelm
Here in the US it’s Mother’s Day tomorrow and I can say without a shadow of a doubt, my son keeps me going. I mean seriously what would he do without me asking him silly questions like, have you had enough water today? 😉😊 If you’re a mom, Happy Mother’s Day weekend 💖
Photos: 1999 – first toes in the ocean, 2004 – one of my faves (we grew sunflowers 🌻), 2006 – birthday kisses
With regard to the prompt overwhelm – Sensory overload and MECFS go hand in hand. It’s hard to even explain how overwhelming life becomes with this illness. There are scientific reasons for this having to do with adrenaline surges and brain waves as the body fights to survive on such low energy, but I’m not going to go into all that right now.
Today’s prompts: Advice for someone newly diagnosed & Medical Advice
It’s difficult to narrow down which advice would be most beneficial to someone newly diagnosed. Two of the most important things my diagnosing doctor told me were:
💙 there’s no magic fairy dust cure (if there were everyone would be cured) and
💙 try to stay in today
And if I were going to add to that I would say:
💙do not follow the copious advice you’ll likely receive at the hands of ill informed health care professionals to push yourself to stay physically active (as I and so many before you have, we’ve only gotten sicker). Just rest, heal, be gentle with yourself
💙Lastly, this isn’t your fault.
Medical advice is a very touchy subject as we are all different and what helps one person might not help another. My only advice would be if you’re feeling worse or your symptoms start to differ, seek specialists who will listen. This illness takes a heavy toll on the body and as time wears on comorbidities are common. You know your body, if something feels wrong, keep pushing for answers.
Today’s prompts: Off prompt to share video
The ME Action Network
“A short film by people with ME and experts, warning of the long-term consequences viruses can have.
Some post-COVID patients are not recovering as expected, and researchers are predicting the pandemic will lead to a surge in long-term chronic illness, including an uptick in cases of myalgic encephalomyelitis (ME).
Thank you to Professor Chris Ponting and Dr. Nina Muirhead for their expert testimony, and to the many people with ME who submitted videos to be part of this. After the COVID-19 pandemic, the number of people living with ME (Myalgic Encephalomyelitis) and other chronic illnesses will grow.
Debilitating symptoms won’t resolve, and physical isolation won’t end. We are the #MillionsMissing, and we call for an urgent response to mitigate this coming crisis. The time to educate healthcare workers, invest in biomedical research and treatments, and expand accessibility is now.
For many years the treatment recommendedmaksssk to people with ME in the UK has harmed a majority who undergo it. We need change now.
Today’s prompts: Going Blue
In 1998 my mom, my son, and I took what would be our final vacation together. As a collector of bears at the time, this little cutie was my souvenir. I had no idea at that time that that would be our last vacation, that this little bear would mark some of the fondest memories I hold to datemaksssk. I also didn’t know my mom had MECFS. She was clearly ill, but I now believe she was never properly diagnosed. I have the same symptoms she did and similar lab results.
My heart breaks when I think of her life compared to mine. Here I am with the internet, the world at my finger tips, while she spent years in the quiet confines of her bedroom with no internet, no cell phone. She returned from our trip together and continued to decline. The wealth of knowledge I now hold regarding this monmaksssster of an illness, she had none of it. If only she’d known how to better care for herself and stop pushing herself, maybe she’d be fighting right along side me. I lost my mom in 2002, to heart failure, a common (top 3) cause of death with MECFS.
May 12th, Florence Nightingale’s birthday, is International Awareness Day for Chronic Immunological and Neurological Diseases, including: •Myalgic Encephalomyelitis (M.E.) •Chronic Fatigue Syndrome (C.F.S.) •Fibromyalgia (F.M.) •Gulf War Syndrome (G.W.S.) •Multiple Chemical Sensitivity (M.C.S.) Ms. Nightingale was suspected of having M.E/C.F.S., although it was not yet a specific diagnosis.
Below are a few more of my doodles (most are reposts as my energy is running very low from trying to keep up with the above prompts) as I follow along with World Watercolor Group’s daily prompts over on Instagram. Wishing you a peaceful day, which seems hard to come by with all that is going on in the world right now. Stay safe 🌸😷