Hello and welcome to April’s newsletter. Hope you have had the best month possible.
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 to each person’s likes and interests. Some of the items included this month were blankets, fluffy socks, cook books, cooking accessories, art supplies, beauty gift sets, chocolate and a colour changing light.
“Many thanks my daughter was thrilled and it definitely put a smile on her face your all wonderful it’s very thoughtful thing you do with lovely gifts and we would like to thank again.”
“I was absolutely blown away when a surprise package arrived from you guys. My lovely friend, also a sufferer, nominated me. The items were so perfect for me, they were wrapped so beautifully, and it literally turned my day around. I can’t thank you enough for what you do. It really made a miserable sod very happy and I felt so loved. Thank you so much”
Carers Week 2021 takes place 7th–13th June and nominations are now open. You can nominate a carer of an ME sufferer for a Bear Hugs Smile by completing our nomination form. (Repeat nominations are now considered after the timescale of 2 years however new nominations will be prioritised)
Thank you to Anna for creating a great event. Hope you all enjoy your tea parties.
Smile of the month
Each month we ask on social media what has made you smile this month? We love hearing the responses and hope by sharing some of your smiles it can help others to find a smile too.
What’s made you smile this month?
This month’s share a story is by ATiccersGuideToLife. Thank you Lauren for kindly sharing your experience of ME and your personal advice…
After a fall in 2017 I broke my coccyx, at the time I had laryngitis which would not clear up and I was working overtime in a restaurant as a waitress. I struggled to walk with the pain of my coccyx and could barely talk with my laryngitis. I overworked myself- in hindsight I should’ve been off sick from work. This would’ve helped my healing process. At the time I suffered with severe panic disorder accompanied by depressive disorder & the coming weeks after my fall I was sleeping for 16-18 hours and waking up as if I had had no sleep at all. My fatigue was put down to my depression and it seemed to make sense.
Fast forward to now & I’m a medical mystery, completely fatigued 20 year old student who can sleep up to 28 hours a day and still feel unrefreshed.
Coping with missing out:
I can’t help but feel frustrated when my peers are off partying & having fun & I’m stuck in bed with a debilitating migraine after a 26 hour sleep.
I try remain as positive as possible most of the time as I find focusing on frustrations in life brings my mental health down. It isn’t always easy to be positive but I’m getting there. I use my blog to focus on advocating for people with chronic illness which in turn also educates my friends and family on my condition which means I’m less likely to miss out on things as they know how to accommodate my needs.
I saw a quote through my Instagram page the other say that’s read ‘sometimes the most productive thing you can do is to rest,’ and that really stuck with me. Because it’s true. For people with ME, pushing forward through the fatigue can sometimes only make you feel worse. It’s about finding a balance and learning to use your time wisely.
The Spoon Theory:
It used to upset me not being able to keep up with my friends, I’ve tried to push through the fatigue in the past but it just makes it worse in the long run. Trust me. I’m a boom and buster- I do loads one day & not so much the next. I’m trying to learn how to pace myself. You see ME is so unpredictable, I like to run with my short bursts of energy when I have them. That being said, pacing is incredibly important and amongst my carers we chat about my energy levels often!
If you’ve not heard of the spoon theory I’d highly recommend you look into it, I’ve done a couple of blog posts & some Instagram posts about it and think it’s so useful to understand how best to use your energy. (Spoons refer to energy!)
Asking for Help:
It’s okay to ask for help. If something is likely to take up lots of your energy but someone else may be able to do it easily, ask for help, it’s okay. I’ve always been highly independent & a great cook. It makes me sad to know my ME has stopped me doing things to the best of my ability, I get particularly frustrated over not being to complete mundane tasks such as having a shower or cooking myself dinner, making my bed sheets. Something that helps me accept help from people is definitely knowing that if I have someone brush my hair for me or cook me dinner it could mean we could then do something fun afterwards and I would still have energy to do so and not nap. Gosh I love napping. Only my naps are always 2-5 hours for a quick nap & I have been known to sleep for over 24 hours as a ‘ nap’ too hah!
My fatigue can cause me to be really dangerous sometimes so accepting help for my own safety had to become a thing pretty quick!
Accepting I need a wheelchair:
Something I don’t think I really realised before I became unwell in 2017 was that not everyone who uses a wheelchair uses one because they can’t walk. Yes I have mobility issues due to joint pain & inflammation, but I also have crippling fatigue and hypersomnia which leads to me missing out on tasks. The day I started using a mobility scooter I felt like my freedom was coming back. I then transitioned to an electric wheelchair which was a huge emotional adjustment, but the best decision I ever made. Using my chair helps me save my spoons. It means I’m able to get out with my friends and family more- yes access issues are a huge problem but having my chair is the difference in me going out once a week & spending the rest of my time bed bound and me having more independence & starting to actually enjoy life not just live it.
Understanding your condition:
The things I’ve learnt from my ME journey.
– I’ve learnt to educate myself so I can educate others.
– If you don’t advocate for yourself and others like you it can be incredibly difficult to get support.
– I’ve realised that having a routine can help me manage my fatigue levels.
– I know that I don’t need to feel guilty for having a nap but also having a 2 hour nap to restore some energy rather than a 4 hour nap is a much more productive use of my time.
– I now understand to be honest with people around me about my symptoms and how they are affecting me
– I’ve learnt to take life as it comes. If I have a burst of energy, I tell people around me so we can do something fun to make nice memories
– I know having a chronic health condition isn’t the end of the world but I do need to learn to adapt my life a little and that’s okay
Lauren – aticcersguidetolife.com
Thank you to everyone who has supported us this month. We are so grateful for the kindness and generosity which enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.
A big thank you to Helen who generously chose to support us with her Facebook Birthday fundraiser.
You might remember on the 30th November 2020 Grayson shaved her head to raise money for us with her fundraiser ‘Shave for Smiles’. She raised an amazing £265.50 and has now uploaded a video of her shave. Check out the video here. Thank you Grayson.