CFS/ME Update - 11 Years On!
Added 2020-05-30 18:51:52 +0000 UTCHey guys! Here's a video update on my CFS/ME 11 years after first having symptoms. This video will be available on YouTube in a few weeks.
Hey guys! Here is the video update on my CFS/ME 11 years after first having symptoms - this video was initially suggested by Alannah Bradley via PM, and after so many of you guys commented on my previous post about the topic, I decided to film the update for you.
Because of the subject matter, I will be putting this video up on YouTube with an extended intro promoting this Patreon in a few weeks' time. Other videos posted here will probably be more exclusive but I feel as though this is a topic that needs to be spoken about.
If you are on the Vault+ tier please feel free to message me with any video topic ideas you may have! I'd love to create more videos like this that are easy to film and are informative/entertaining in order to thank you for your ongoing support.
A quick reminder that as it is the 1st of a new month soon, you will be charged for the month of June in two days time, and from then on your payments will be monthly as per usual! If this affects any of you financially, I suggest moving down to a lower tier and readjust that amount on the 1st of July to minimise the impact. Thank you for all of your understanding!
Emma
Comments
I have hypothyroidism which causes symptoms that overlap with CFS and after first hearing about your struggle I’ve wondered for quite a while if I have the misfortune to have both. Despite being medicated for my thyroid for a decade, I continue to exhibit almost all of the same symptoms as when I was first diagnosed. My cold intolerance isn’t as strong and the worst of my brain fog is gone (there is a year of college I basically don’t remember leading up to my initial treatment because I was in a daze almost 24/7) but it seems like my medication only takes the edge off. The fatigue is just as bad or worse than it ever was. I’ve honestly stopped bringing it up because I am only ever told “your numbers are fine” which is a common issue hypo patients have. Unfortunately, I live in the US and I’m poor. For that reason my options as far as trying to get a CFS diagnosis aren’t great so I’ve never brought it up with a doctor (Because I can’t afford insurance but I make just enough not to qualify for government assistance, my only option - which I’m beyond grateful to have - is go to a volunteer clinic which is only open for about two hours every Thursday so I almost never see the same doctor two times in a row. And since lockdown, it’s not open at all.). Since there’s not much that can be done about it, even if I did have it I just haven’t put in the effort to find out for sure. But I feel like I can really empathize with you and I am so, so very happy though that you have someone like Davey who understands you and what you’re struggling with. It’s very hard for people who don’t have an invisible illness to actually “get it”. So appreciative of the ones that do. I also really appreciate when you talk about stuff like this because I feel like nobody does. 🖤
Amber Smith
2020-07-21 05:19:05 +0000 UTCI started realizing something was wrong with me at 30 when my whole body kept feeling like it was burning. After that I would get sleep attacks, where I had to sleep, I would sleep on the side of the road, in shops, under a pool table in a pub. I would often shake as well, doctors thought I had epilepsy or narcolepsy, After giving soo much blood, going to a sleep clinic, having a brain mri, they finally gave me the diagnosis of cfs/me. over the following years my general fatigue would get worse, as well as my sleep attacks. Over the years I have been given so many types of pills to help, I felt like I was being experimented on, nothing worked, they all made me feel worse. Eventually I did get given something that helps. I almost never get sleep attacks anymore, but the chronic fatigue and brain fog are always there. I used to do karate 6 days a week and work full time and have a full social life. When I started my youtube channel the main focus was going to be my progression through karate. As the years went by my fatigue got worse, I no longer do karate, I only work 2 days a week, and my social life is dead. I talk about it often on my youtube, but I make those videos for me really as they don't get many views. When I met you at HMV London I was really struggling to keep awake, I remember telling you, which I don't normally do when I first meet someone, but I knew you'd understand. I went and slept in a field after that. I can't do much exercise now as it takes me days to recover. I was going to be an author, but the brain fog is too much to think of stories. I think you're lucky to have found a partner, I struggle to meet people, I'm generally a very confident person, but when it comes to relationships, cfs has ruined my confidence. I know each year I'm getting worse. I went up scafell pike and snowden for the ME Association charity before my health reaches a point where that won't be possible. I was meant to do Ben Nevis as well, but the first 2 climbs nearly killed me (also on my channel) So I postponed my ben nevis climb to 2020, which due to corona I have to delay again, but I worry my health will have declined too much by next year and I'll never manage all 3 peaks. Anyway for now I just take each day one day at a time. If I have a day I spend in bed, then I spend it in bed. I've got used to living like this now, although I know it could be worse, I know of 2 people that must use a wheel chair when going out due to cfs, and although my legs will actually completely stop working if I do too much, I limit what I do, so that my legs can keep going, thus not needing a wheel chair. I highly recommend you watch the film called Unrest, and tell all your friends to watch it, it's all about cfs and I could relate so much to it. Anyway I was only going to write a few words, I seem to have gone on a bit.
Supertell
2020-06-15 23:52:35 +0000 UTCI’m so happy that it’s managed to ease up for you! I’m hoping I get that lucky but due to the multiple chronic pain conditions I have it doesn’t look like it will! Had multiple panic attacks Monday night and pretty much been in bed exhausted since then! Hoping tomorrow is better so I can do some photography!
Shaunagh Mepham
2020-06-04 23:42:22 +0000 UTCBit off-topic, but wow your hamster tattoo on your shoulder looks amazing. I've always liked it but the colouring truly is incredible.
Lauren Ridgwell
2020-06-03 23:31:59 +0000 UTCThis is great to learn Emma. Had no idea you had CFS and got to give you real credit to explaining it. Keep it up.
Barry Aldridge
2020-06-02 08:03:19 +0000 UTCWell thank you for all you do for us lot <3
Connor Matthews
2020-06-01 22:51:29 +0000 UTCIt’s very tough! I try my best to be in bed as soon as I can, no late night parties, plenty of fluid and the adrenaline gets me through the hour I’m on stage! Before and after I’m super kind to myself :)
Emma Blackery
2020-06-01 22:48:58 +0000 UTCHow on earth do you manage touring with CFS? You must be super committed, you're a superstar! <3
Connor Matthews
2020-06-01 22:28:31 +0000 UTCI figured that adrenaline may have something to do with it, you always seem so energetic in your performances that it's hard to tell CFS is there. I'm lucky in the sense that my team are very open with me about what ails them and the struggles they face, in the same way that I'm open with them about my anxiety. I will suggest to her to sit down with my manager (and of course I'd go in with her if she'd prefer) and try and work out what we can do. Luckily my team are interchangable (to an extent) in what they can do so making a few changes when needed, I'll just need her to tell me what she can and can't do during those periods. Thank you for your advice, Emma. The concept of CFS is still fairly new to me and I'm trying my best to understand it for her so I can do whatever I can to make things easier for her if a bout were to occur. I'm still fairly new to my position of Team Leader as well so management is still something I'm trying to wrack my brain around. Thanks again :)
Sam 'ThePandrus' Upton
2020-05-31 15:00:11 +0000 UTCUnfortunately gigs are a very different environment, as adrenaline masks fatigue. When I worked in a restaurant I just tried my hardest to struggle with it, I didn’t explain my condition to my bosses and they just thought I was stroppy and lazy. I’d recommend your colleague schedule a meeting with all senior staff (recorded) and bring up her condition, discussing whether or not there is a main task she can be delegated with when she feels fatigue coming.
Emma Blackery
2020-05-31 14:50:46 +0000 UTCI work with someone who's been diagnosed with CFS and they're finding it hard to cope with it. We work in a busy hotel restaurant so if she gets a bout of it during service she finds it hard to get through. Obviously we try to accomodate it but when it's super busy we can't as well as we can when we're quiet, so I was really wondering if you had a bout mid-gig, how would you go about it? Is there anything that helps or is it just a case of "get through and rest when it's done"? Being a team leader where I am I'd really like to try and help her so any advice is appreciated.
Sam 'ThePandrus' Upton
2020-05-31 13:53:57 +0000 UTCAwww Davey sounds soooo helpful and observant when it comes to noticing the signs of you not feeling well etc. That's so sweet! i'm glad you're feeling better and thank-you for making this video because people with CFS can really relate and feel less alone :)
Steff Hanson
2020-05-30 22:42:12 +0000 UTCVery proud of you Emma for opening up about your CFS it's never easy I remember I had a hard time opening up about my anxiety but now I barely noice it anymore. Thanks for the update Emma
Jake
2020-05-30 22:33:14 +0000 UTCI'm so glad that you are doing better, I have a cousin with severe CFS so I've seen how absolutely awful it can be to live with. You are so strong, and I am so glad you have such a supportive partner!
Hannah Jane
2020-05-30 22:08:57 +0000 UTCIt's good to know that in the macro it is getting better! Davie is a G for helping you like that OMG! #PartnerGoals!! ❤️ Love you both and love this video! It's good to hear someone who has it, to talk about it and start to take away the stigma!
Adrian Buchelt
2020-05-30 19:37:18 +0000 UTCI am so proud of you.
Catherine_I_M
2020-05-30 19:14:17 +0000 UTCI get that, I've been doing the same a lot of the time😂 x
Bee Singleton
2020-05-30 18:57:17 +0000 UTCmy bad! all fixed. losing track of days!
Emma Blackery
2020-05-30 18:56:38 +0000 UTCfixed it!
Emma Blackery
2020-05-30 18:56:23 +0000 UTChahaha oh my bad!
Emma Blackery
2020-05-30 18:55:44 +0000 UTCTomorrow is the 31st just FYI 😆 you've still got an extra day
Leona Phillips
2020-05-30 18:55:33 +0000 UTCtomorrow is the 31st by the way! x
Bee Singleton
2020-05-30 18:54:31 +0000 UTC
