Living with chronic illness and life Q and A 

Hoping you're able to see a pain specialist to help manage your pain. Low dose Clonidine is becoming popular for managing symptoms of ME/CFS, Fibromyalgia, and POTS. I take it before bed, and it's helped a lot. If you have digestive issues like gastroparesis or intestinal dysmotility, Pyridostigmine has emerged as a newer repurposed medication to treat that as well as ME/CFS fatigue and exercise intolerance.

I’m glad you’ve found me! I’m still learning so I hope you’re finding my videos helpful and if not then I hope they distract you 😂

I’ve only ever seen red dwarf but not any of the others. Thank you, my nana just cut it for ne

I’m glad you enjoyed it! I might have to do more of these! Definitely try new things, I’ve learnt recently that it’s not as scary as I anticipated

@@SmallandStrong66 Thank you, I will! 😄

Fatigue is a massive part of CFS and I was told there was no point getting a diagnosis for my fatigue as it’s all under the umbrella of EDS. I agree with you that even rest isn’t restful!! I rely on people for help too but as I’m about to live alone it’s going to be tricky!

I think CFS’ fatigue is different than other chronic illnesses fatigue, because the fatigue is completely life crushing. I do think there is a difference between chronic fatigue, as in it’s a chronic fatigue you struggle with due to a chronic illness, and CFS chronic fatigue. No matter what version you have it sucks!😭 Sorry about commenting again. I was thinking of things you could do while resting to scratch that creative/active itch, so here’s my ideas/things I find that help. 1- Finding activities you can do that take little energy, but still take creativity. For me, I got into creating movie edits. I simply do this from my phone, and I really enjoy doing it. For you it could be painting ,writing music or a play, whatever you want. If you are too exhausted to do anything, I find watching RU-vid videos like your vlog about your mom’s birthday, or someone’s self care video makes me feel a bit like I participated in the activity as well. If your into video games, I recommend buying a game that you can free play in like Legends of Zelda. Instead of actually doing something active in real life,you can do it in the game.Running ,climbing, fishing, exploring ,etc. 2- Self care. It can be relaxing and make you feel like you accomplished something. 3- Have something to look forward to. Maybe a favorite snack you only have on rest days, or a favorite tv show you watch just on rest days. 4- Change your mindset. This one is tricky but it can be done. Instead of dreading having to rest and thinking about what you could be doing instead, try thinking of resting as a day you get to sit back, relax and do hobbies you can only do while slowing down. Enjoy the chill.😂Think of everything you do as an activity you accomplished.For me I consider a shower as an activity.If I think of it as an activity, then I feel I accomplished something. I know on rest days we often are in a lot of pain, but it is possible to find activities you enjoy and can manage on those hard days. It’s about enjoying the little stuff. Hope this helped! 💗

I pray that you have complete healing and restoration 🙏🥰

That’s very nice of you, thank you

Thank you!

@@SmallandStrong66 your welcome!

The Christmas advert for Aktion Mensch is beautiful and I had a great time filming it!