Happy New Year. Welcome to the start of another year of monthly updates. We hope you enjoy following along and seeing first hand how your kind support makes Smile For ME what it is.
12 Smiles were sent to both ME sufferers and carers of all ages this month. The items included in our Smiles change all the time as we personalise them with each person’s likes and interests. Some of the items included this month were bath bombs, candles, blankets, cushions, cuddly toys, activity books, crochet wool, socks, succulent seeds and a jewellery box.
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 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.
Thank you Penny for sharing your story…
I was so chuffed when Alice contacted me, inviting me to write a piece for the Smile For ME charity, newsletter. It’s taken me longer than I had anticipated due to yet another lovely setback. Include Christmas, and that’s a few months written off. But finally, here I am. It’s lovely to be here.
Who am I?
Hi. I’m Penny. I write over at my blog Hope found in M.E – www.hopefoundinme.com.
My writing is pretty eclectic and I love to try and include some humour where appropriate. I am in mid-life, a married empty nester with plenty of our young folk’s Yellow storage squeezed in various corners!! I’ve had ME since 2004, on the more severe end of the scale, and have been homebound for about 15 years. I started writing in 2016 following the loss of my companion Greyhound of 10 years. There was a void, as I’m sure you can imagine. So fairly late one night I decided to give it a try. Eureka! I managed to set up a blog. Also aided by B12 injections, which have helped me regain some of my cognitive ability, reading being one. (Although still limited, following a 7 year hiatus all ‘thanks’ to ME.) A year later I took the plunge, prompted by my husband, to adopt another sighthound. I haven’t regretted that decision either.
Although I cannot write any where near as much or as often as I would like, I still love it. Writing has given me a window into the world and some connections I wouldn’t have made had I not given it a try.
I hope you enjoy my contribution to the newsletter.
Here we go…
I had started to write a piece, but I’ll be honest it didn’t really cut the mustard. What does that actually mean anyway?
So, as I’ve been ploughing through setback, number 5 zillion recently, I thought I’d share a little bit about my strategies, or how I approach a setback. It’s fairly light-hearted.
My potted guide to setbacks. Not sure if they’re life hacks. Setback hacks. Set-hacks maybe?
Not an exhaustive list.
- First accept… Oookay, I am in a setback, or it most certainly is on the horizon. And if I keep on fighting it, a relapse may make itself known all too soon.
- Invitation accepted…scrub that, existence of setback acknowledged.
- So I need to stay in/on the bed. Or rest where it works for me best.
- I basically need to REST.
- Time to get the flask and water bottles ready.
- Can I remember where they are? Ah haa, my very slow decluttering efforts are paying dividends. I CAN!!
- Are there enough trays? Do I care? Yes. Trays mean refreshments.
- Put favourite food containers where they are visible and easily accessed.
- Make a mental note of foods my body is going to manage.
- Notes 8 and 9 can be taken two ways. Favoured foods and favoured containers. It’s helpful if they fit on the tray or stack pretty well. I am prone to being clumsy, setbacks make that worse.
- If I don’t have 8, 9 & 11 put them on the list. Yes, that’s how my brain works. Or not. It’s clearly open to debate. I mention list. My husband is my ‘happy-shopper’.
- Green grapes, herbal tea, ginger oat biscuits and peanut butter have to be on the list.
- My accumulated pile of cheery blankies & cushions have a dual purpose. For everyday relaxation/rest & when relapse, sorry setbacks happen. Don’t want to get ahead of myself, lol! And for my doggo who likes to hog the bed, or anywhere comfy. My companion sighthound LOVES being on the bed/sofa/everyone’s bed. You get the picture.
- Things need to be within reach. Can I read? (Unlikely in my case.) Can I listen? Possibly. Do I want my brush pens and can I nick the digital radio from downstairs? Answer, of course I can nick the digital radio! *Note to self – acquire a digital radio for bedroom!
- Don’t fight it.
- Without totally beating myself up, think back to the trigger. Not for any other purpose than to know. We’re going forwards now. But be aware what was the straw that did the proverbial.
- Do any weekly things need to change? Ie. Help at home, times/routine of etc.
- If anything brings on further crash, don’t persevere. STOP!
- How’s the light sensitivity? Shades as always at the ready.
- And where are my noise cancelling headphones. Only kidding, I know exactly where they are. But I had you thinking for a minute!
- Accept hair will be extra greasy. Do I have enough wet wipes? No I don’t flush them.
- Are all my pjs washed and fresh as a daisy. Because I’m not going to be for a while. I’ll qualify that. Shower days are infrequent, and less so as a setback sets in. Tmi?
- The list could really be endless…
Ok. So with that checklist in mind, what else?
- Try and find a mental focus away from the setback. Hard as it may be to prize your gaze away from the artexed ceiling! Sorry, my humour can be a bit dark. But I know many patterns on the ceiling. I even have favourites! Distractions can help keep your mood lifted. Even if just a little.
- And I repeat. Don’t beat yourself up. It happens, to all of us. And sometimes we haven’t got a clue what the trigger is/was. It’s not your fault.
- Tell someone if you’re struggling with it and if it’s making you feel down. I often do. I’ll have a cry and a grumble. It helps.
- Do all the self-care you need. It’s not selfish, it’s necessary. And accept all the help you need. And if you need more, don’t feel embarrassed about asking. When our youngsters were much younger I was fortunate to have a list of parents I could ring for help. They were absolute treasures.
- Don’t feel bad if you need to cancel ANYTHING and EVERYTHING. You must come first. I can’t do a lot, so that makes cancellations pretty straightforward. But I have had to delay some visitors who have already been delayed for months. Oh well, there’s 12 months to choose from next year, or there’s always the following decade of course! We’re already there. Oops!
- Make a note of strategies that are helpful. After all these years, I sort of have a plan. Way back we used to wing it. Having a loose plan or more a coherent one helps, especially if brain-fog sets in.
- Try to be patient. I know it is so tedious, but it will help you to rest.
- Keep the *25% rule in mind and when you sense the upturn approaching or you’ll end up like an ME flatbread again pretty quickly.
*25% rule – do only 25% max of what you think you can do or preferably – less. Then stop and bank the remainder. Yes I know, what is this thing called ‘remainder’? Is it a term from an ancient myth? Very probably. But let’s not get caught up with it. I never was that good at maths (or myths) and am not too worried about it now. But most importantly, if you start the feel the burn in your brain or body. STOP!! You’re not ready for whatever it is you tried. Continue resting and have another try in a day or so or longer. It’s far better to take your time, than to try and rush things.
And that’s a few of my Set-hacks. I’m sure folk have many more they could add and I could add more detail myself. But appreciated that reading can come at a premium. We all have to do so much self-help and are all in this together. You’re not alone.
This setback happened before my husband was about to take a weeks holiday from his full-time job. Poor guy. Some holiday. But having him around helped manage the setback, he answered the door to our doggo walker, kept me fed and watered and cheered me up. He bought some paint samples for our shower room. It’s looking a bit gloomy. DIY not really ever being on the agenda. But it will happen. So that was a nice focus, even though I won’t be the one doing the painting. But thinking about accessories has been a very pleasant diversion. Along with the odd copy of Hello magazine.
Thanks again to the Smile For ME team for inviting me to include a piece for the newsletter.
Lovely to meet you ‘virtually’. And if you ever pop by my blog or on social media, please do say hi.
Last year lots of amazing people did amazing things to support us so we want to say a massive thank you to everyone involved. Without your kind support we would not be able to send Smiles to ME sufferers and their carers so we can’t thank you enough.
Natasha and Thea are currently fundraising for us by selling a ‘PLEASE OFFER ME A SEAT’ pin badge they created. The pins are 3cm in diameter, made of light blue soft enamel and rose gold plating. They are available to buy on misstheabella’s Etsy. They hope having a pin will help you feel more confident asking for a seat when you need one. Thank you Natasha and Thea for kindly choosing to support us.
If you would like to fundraise for us this year we would be really grateful. We are registered with Virgin Money Giving where you can set up a fundraising page making it easy for online donations.
A special thank you to everyone who donated money to us this month. We are really grateful for your generous donations. Thank you Mary, Jackie, Terry, Carole, David, Tracy, Mavis, Pauline, Dionne, Steve and the Over Fifties Badminton Section. Your support means such a lot.