Hello and welcome to March’s newsletter. A lot is happening in the world at the moment but we hope you are staying safe. Sending a big virtual hug your way.
As you may have already seen due to the impact of COVID-19 we had to make the difficult decision to postpone sending Smiles from April onwards until further notice. You can read our full COVID-19 Update here. We love sending Smiles and can’t wait to get back to regular scheduling as soon as possible.
Merryn’s Smile Day
On the 13th March we launched Merryn’s Smile Day 2020, sending a Smile to severe ME sufferers in Merryn’s memory. Unfortunately as we are postponing all Smiles this cannot go ahead as originally planned. We hope to reschedule this event from 13th May 2020 to 8th August 2020 to coincide with Severe ME Awareness Day. We will continue to review the situation and keep you updated.
March’s Smiles were not affected so 12 were sent to both ME sufferers and carers of all ages. Some of the items included were art supplies, books, bath bombs, candles, face masks, make up, socks, personalised art work, sweets, chocolate and hot chocolate.
Smile of the month
Each month we ask on social media what has made you smile? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.
Share a story
Share a story is a segment where we share a story from an ME sufferer or carer about an experience of living with ME to remind others they are not alone. If you love to write and would like to be featured in an upcoming month please email us at firstname.lastname@example.org.
Please note Smile For ME are not medical professionals and all stories shared as part of ‘Share a story’ are personal to the writer and express their individual views and experiences and do not necessarily reflect the views of Smile For ME.
This months share a story is by Caz. Thank you Caz for sharing your story…
The Reality Of ME/CFS Exhaustion By Caz / InvisiblyMe
I’m tired of being tired. If you’re reading this, then you probably are too. The fatigue and exhaustion that come with ME/CFS are overwhelming. It’s also common for those with other illnesses and conditions, like fibromyalgia, to experience exhaustion. We’re not talking simply being tired after a long day or needing more sleep. We’re talking bone-deep weary and painfully exhausted, with or without you needing to do anything, irrespective of rest or sleep.
What ME/CFS Exhaustion & Fatigue ARE NOT …
- Laziness– it’s not simply a case of not “wanting” to do something or that we can’t be bothered to do it.
- A temporary state that you can simply overcome with a little positive thinking, the latest health fad, a gym session, a balanced diet, magic potion supplements or an energy drink.
- Cured by sleep – being “sleep tired” and being physically and mentally exhausted are not mutually exclusive but they’re not the same thing. Getting some Zzzs does not equal a body that’s got energy.
- An excuse– It’s a reason, not an excuse, for being the way we are. It’s why we don’t do certain things, why we may bail on social occasions, why we don’t have plans for the weekend or evening. It’s the reason, not an excuse, for why even doing the basics day to day can be monumentally challenging.
It’s possible to be incredibly exhausted, yet feel restless. It can be incredibly frustrating, feeling too shattered while your brain is like cotton candy; you want to do something useful, fun or productive, but simply don’t seem to be able to manage it. It’s not just a physical issue, either.
As is the case for many that experience so-called ‘fibro fog’ with fibromyalgia, which I’ve also been diagnosed with, it can take a toll mentally. I’m not as sharp as I used to be; my memory, thought processing, concentration, focus and general mental efficiency are all impaired, particularly when extra exhausted. A writing task that should, for instance, take 20 minutes then takes me 4 hours; upon re-reading it the next day I find I have to scrap and re-write it because it’s so poor and barely makes any sense.
“What have you been up to?” That can seem like a loaded question. Days can be spent keeping busy, resting or totally zoned out in pain and exhaustion, not feeling bored and yet not definable either. It’s like you can’t quite put your finger on exactly what you’ve been doing all day, making the question feel almost accusatory and very tricky to answer.
What ME/CFS Exhaustion & Fatigue REALLY ARE…
- The polar opposite of glamorous– Sometimes simply getting out of bed and taking care of the basics can feel as though they’re beyond our capabilities. Some days it’s going to be greasy hair, no shower, pyjamas, bad moods, washed out complexion, and under eye bags big enough to carry melons. Chronic illness is not pretty.
- A vicious cycle– When you continue to push yourself and ‘work through it’, it comes at a cost and you pay for it afterwards. My body seems to be forever in this cycle, forever burnt out and desperately needing to play catch-up.
- Frustrating– Pacing is required yet it can be very frustrating because you want to do more when it’s simply not possible. You need to ‘do’ but your body doesn’t want to know and your brain can barely string together a sentence. You can be restless yet exhausted, motivated yet defeated.
- Isolating– Chronic illness and chronic pain can be isolating experiences. You may end up losing parts of your pre-illness life, like work, friends and hobbies. Your ability to have a social life can be impacted to varying degrees by chronic fatigue; you may never have the energy to go out, or you may be regularly cancelling plans. You may find friends and family don’t quite ‘get it’. ME/CFS might make you seem unsociable, leading to more isolation and feelings of loneliness, further impacting mental health.
- A spiral of guilt and feeling judged– I think that having to deal with exhaustion on a chronic scale, day to day, is something not fully understood unless you’ve experienced it yourself. To the outside world you may look fine, especially when you’re showing the outside world your best self, not the times you’re unable to move. Invisible illness can not only be misunderstood, but it can lead to us feeling judged, not believed by those around us or medical processionals, feeling as though we’re looked upon with scepticism. Then there’s the guilt; I feel this with anything and everything these days, all the more since losing my 9 to 5 job. Many feel guilt when we don’t do enough, guilt when we do. Guilt when we smile or, heaven forbid, have a moment of joy when we should be sick. What does sick look like? It actually looks pretty ‘normal’ and invisible much of the time.
Many of us become skilled at hiding our struggles from the outside world. You put on the mask and save up what little energy you have to keep up appearances. What you portray to others isn’t the full story. Likewise, what we see generally on social media from anyone, sick or not, is often not the reality.
Yes, the reality of ME/CFS is not a pretty one. But there can be moments of joy and some positives along the way if we look hard enough. Some days we have to squint, but they are there. The chronic illness life is not one I’d wish on my worst energy. It takes a tough cookie to keep going but we do what we can, and that’s good enough. You are good enough. Living with bone-deep exhaustion is a challenge but it’s about choosing your battles wisely. It’s learning to readjust your expectations, figuring out what real self-care is all about, and learning to appreciate the small joys in life.
It’s not the life you thought you’d have and it’s okay to not be okay. It’s okay to be angry or upset or however else you may feel; experience it, process it but don’t let it swallow you whole. You owe it to yourself to keep going, to seek out those small joys and brighter days. It’s about letting go of the ‘what ifs’ and the ‘shoulds’ that can weigh on us to heavily. It’s about having the courage to write your own story.
InvisiblyMe – www.invisiblyme.com
A big thank you to those who have donated to us this month. We understand the situation for everyone is very difficult at the moment so your kindness in choosing to support us means a lot. Although we have temporarily postponed sending our Smiles please be assured the money will be used to help us send Smiles in the future.
A special thank you to the family and friends of Barbara Jean Baker for raising money for us in her memory.