ME/CFS ESSENTIAL ITEMS. Things that help me COPE with my CHRONIC ILLNESS. My Spoonie Must-Haves.

[@ebhelyn3479]

1. Hot water bottle 2. Mobility aids, like walking sticks, wheel chairs (and in my case knee straps) 3. Pill boxes 4. Space heater (interestingly heated soles for shoes are cheaper than heating the whole house yourself and I'd suggest reading an article called 'heat the human, not the home' if you're struggling with your heating bills. Also a desk sleeping bag with a hot water bottle is good if you're at a desk a lot.) 5. Snacks 6. Water 7. Pregnancy pillow (and pillows in general. I'd suggest ikea's £30 memory foam pillow, as it's helped me) 8. Jigsaw board with jigsaws sets. Small puzzles. (I would add that I use a sudoku app on my tablet for this, and I like reading webcomics) 9. Ready meals (gym kitchen is expensive and not alwasy tasty but you're guaranteed at least one of your five a day with them) 10. (This is my own add on) an online group for people with your condition, such as the 'Sloth Enclosure' a Discord ME group I'm part of. That way you have access to resources and can search for or ask for advice. Thank you for the wonderful video! I hope I've transcribed the list properly. It's also lovely to see the advice in the comments.

[@Doom_Squid_Son]

Hey tell me where i can join that server

[@harleemelland321]

Thankyou so much for the tips this really helps!❤

[@brosiaslife8571]

I use a heated blanket, a pill reminder app, and I love to watch Netflix and crochet & Knit. I'm currently knitting a cardigan for days when it's cold or I get really anemic.

[@strangenorwagien8259]

Heated blanket is one of my must have's! I have the electric type and it dose wonders for my pain🥰

[@ElinorBrown]

sounds amazing!

[@manda903]

I have a heating pad rather than a hot water bottle. It's larger so it covers more area. I use pill boxes and have a body pillow. Relieved to know I'm doing some of the things I should!

[@ambarrose]

I do crochet. Sometimes just random things, just to get into a mindful state. I've used my cane in my work place yesterday for the first time and people were so shocked. It was actually funny, you know. Because they know I've problems but it was like ... If they only believed when they saw me leaning on the cane?

[@alizaras]

Great suggestions! I have been working on things that can save me some energy and when it comes to chronic illness even the tiny things can help. Food is something I've been tackling lately. I got some prepackaged cooked rice that store for months and you just need to heat for a minute which I can add to pre-cut veggies or some fried nuggets to make it more of a meal. Also ramen noodles, if one cooks them on the stove it's easy to add in some veggies from a frozen mix as one boils the water with the seasoning and then add in the noodles as it's boiling. Tweaking the easy meals to give them a little bit more nutrients and sustenance has helped me so much. Another thing I try to remember is that it's okay to buy pre-packaged food even if you're mindful of the environment. Perfect no waste is for those that are able-bodied, if you have a chronic illness that comes first. Being kind to yourself helps a lot

[@ElinorBrown]

Yes, pre-made foods are some of my favourite energy savers, its great that you've worked out easy ways to increase the nutrition in store bought food, to make it work for you! Yes! its so true, i do try to mindful of the environment but theres no way to be perfect no waste or even close with such limited energy!! Doing your best and being kind to yourself about the things you cant do is super important!!

[@amandamiddleton8526]

Heating pad, pain meds, braces for involved joints(I have hEDS), and a weighted blanket for the nighttime

[@silvermoonuk]

I use bio freeze Gel on my feet as its not only good for achey feet, but if you suffer with hot feet bio freeze Gel quickly cools your feet or muscles down. I use a hand Reacher if I struggle picking up the post.

[@daisybarton8176]

I use bio freeze on all my joints and muscles frequently but never thought to use it on my feet so thank you!

[@silvermoonuk]

@@daisybarton8176 biofreeze fantastic on feet 👌 it is a life saver 4 me as I get terrible hot feet to the point I cannot sleep because of the hot sensation. I sometimes use ibuprofen gel as well on my joints, feet, hands ✋ Aveda do an oil and cream called Stress Relief and that nice on the skin but it smells beautiful. A massage therapist used Aveda Stress Relief oil on me and it was very relaxing. Aveda products not cheap though but they vegan and smell beautiful 😍

[@snic5805]

Hi silver moon, I suffer this too and never heard of any fellow cfs sufferer with this symptom before!! It makes me feel like it’s not in my head now (as doctors have suggested!) I will defo getting the bio freeze as the burning feeling has kept me up the past 2 nights. Thanks a mill

[@msolodoloo]

omg this is genius

[@tilldawn90]

RE: the jigsaw: I actually love having a jigsaw app on my tablet. I can bring it with me wherever i go, i can do it in bed lying down. I can do it while watching stuff or listening to audiobooks :) Thanks for the vid! Love those canes!

[@darrenreynolds6077]

Yeah you looked cute and defo needed it while filming as it was a very hot year to be locked up. Your face when you shiwed us the pillow brightened up. I did 😮 when you said in the blooper section about your puzzle

[@Wisephoton]

I have two zero gravity chairs. They reduce my pains from standing, walking and sitting.

[@ElinorBrown]

Oooo that sounds really nice!!

[@helmut1773]

Yes to hot water bottles!!! I just discovered last week that there are long hot water bottle that you can use very easily for your neck and back, it's life changing! I have hEDS and I had difficulties using my "normal" hot water bottle for those areas (it made me have weird / bad posture), and now it's so comfortable and it really helps a lot with muscular pain.

[@ElinorBrown]

oooo that sounds really cool!!

[@texasgoddess323]

In the states, you can buy a used wheelchair from Goodwill for $$cheap! I have a wheelchair and keep it in the trunk of my car.

[@esterfleurke9309]

What a great creative insightful video Elinor!❤

[@Valkoinenhai]

I LOVE you walking sticks!! Makes me want to buy one for sure! 😍

[@mlr247]

Love your videos! They are a huge help, thank you :)

[@stage4endochick55]

I love my "pregnancy pillow"

[@ElinorBrown]

they're so good!

[@hannahrideout8282]

In B&M you can get disposable stick on heat patches 2 pack for 99p! Really good for keeping in your bag/car

[@professorg7387]

Thanks for making this incredibly helpful vid! We absolutely love your style and your pink hair! We also majored in Sociology at University! Many blessings!

[@BeverleyButterfly]

Some great tips I love my heat pad and hot water bottles big game changer and yes temperature regulation is so hard xx

[@ElinorBrown]

A heat pad does seem like something i'd really love!!

[@BeverleyButterfly]

@@ElinorBrown definitely helps muscle pain

[@littlemisskate4254]

Hi, what a great video. I have chronic leukaemia, epilepsy, asthma, hypothyroidism and anxiety and depression. When you were talking about filling up your pillboxes it made me want to ask you have you not considered having them put in blister packs which the Pharmacy can normally do then you get a months worth of tablets as that’s what I do apart from my tablets. I do this because like you I want so many tablets and quite awhile back I accidentally didn’t take the right dose for my epilepsy and had a seizure. mainly because my tablets are being changed all the time. I’m not wanting the sympathy vote. I have only just started using the spoon therapy where you use a certain amount of spoons each day and I’ve tried to explain it to someone else but they don’t understand and it was my mum who told me about it because she had seen it on a leukaemia website is now constantly telling me to not use all my spoons up at once. Keep up the good work. P.S when which they’re called cook meals which I just have to put in the microwave or the oven and then I already have frozen vegetables chopped up so I only have to chuck them in the microwave. When I’m having a good day, I will cook myself something else and not have a ready meal, but that’s only every now and again.

[@lifewithtayo5397]

I love the dress you are wearing so much, I know this video is 3 years old now but where did you get it from? I can see if I can get secondhand or maybe sew one if I know what to search for 😅 ✌🏾+ 💜

[@vickilindberg6336]

Using adult coloring books & Crayola pens help me keep my fingers working. Try decorating your pillow as a favorite animal or fictional character. Water bottles also uelp in eep track of how much you're drinking.

[@suepritchard9287]

I love your video 😎😎😎😍😍😀😀😀😀😀😀

[@alejandroroldanropero6604]

Any recommendations for bone pain? Does warm water help? Also, my hands hurt from using a cane but I need to use it for balance, how would you guys make it less painful? Thx for the vid! ✨

[@ElinorBrown]

Yes, usually I would use a hot water bottle/heat pad for bone pain! I have also used ice for shin split pain specifically, which has worked for me. You could try adding some padding to the handle (like fluffy socks?) or there are crutches with forearm support which take pressure off your hands if that's something you need.

[@flo9]

For me treating my muscles helps with bone pain. Making sure my muscles are in the best state they can be helps them support my bones. Especially a fan of my shiatsu neck massager with infrared balls and 2 handles for your arms. Make sure the balls don't only turn, but actually move slightly to mould to your body. That way you can use it to massage at least you whole back.

[@Carlyfraser]

I found that the first cane that I got had a handle that wasn't the right shape and size for me. Try different shapes and sizes of handles! Some canes with the umbrella type handles have foam on them. I WOULD NOT recommend having socks or soft gloves on while using a cane. I've fallen over and slipped before because of trying to pad the handles with socks or gloves. I use my cane for balance, weakness, and fatigue from POTS. Good luck!

[@healwithjen]

Great video 💗💗

[@ElinorBrown]

thankyou !! Glad you liked it!!

[@allie54774]

Fgs sorry I accidentally clicked thumbs down when I meant thumbs up 😅 I changed it instantly but wanted to explain incase you get notified of both lol 😩😩

[@Michelle-qd9gm]

I am a new sub here I am disabled myself can I ask hun what is wrong with you pls so I know what your taking about pls ?

[@st8ofgray]

ME/CFS stands for myalgic encephalomyelitis / chronic fatigue syndrome. Apologies if there are spelling errors, i use ME so much I forget how to spell it

[@ElinorBrown]

ME/CFS !

[@Michelle-qd9gm]

@@ElinorBrown thankyou hun 😊🙏

[@taghazoutmoon5031]

Oh, come on. Some of these tools will make you feel more disabled than you really are. Walking stick? Pill bottles? Give me a break

[@ElinorBrown]

I was disabled for years before i got the walking stick and believe me it makes my life easier, not the other way around. Also this kind of comment is not helpful, many people are very self-conscious about how others perceive their disability, and judgement can make people not want to leave the house (believe me I know) or share their experience online. Before judging what I'm doing without any actually knowledge of my situation why don't you look around the comments of my videos and see how many people find comfort and help in my content and the disabled community online, and consider if you are bringing anything positive by commenting.

[@christinerothwell2349]

😊

[@christinerothwell2349]

Previous comment from taghazoutmoon50 clearly not a sufferer, and judging from their comments has the mentality and limited brain capacity to see that not all disabilities are visible. However what more could be expected from an individual who opened their comment in such an inflammatory way!