OCTOBER 2019 - A Month In The Life Of M.E. - by Alice Ella
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- Опубліковано 4 вер 2024
- Join me on this uplifting fun old journey of living life with M.E. / C.F.S.
This month I set myself a new baseline and try pacing AGAIN. Oh I also got dumped, attempted to go to a Halloween party - in my own house - and had many breakdowns and many cat cuddles. Enjoy!
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Very honest vlog, thank you for sharing a month of your life with us.
I have to say, I did think right away your baseline sounded too high. 15 mins of walking and light yoga - I think a mild ME sufferer might manage that if they were careful, but you do not come across as a mild sufferer.
I used to walk everyday too after bad advice off a doctor. It honestly destroyed me. I only improved my health when I took on Dr Myhill’s advice, including her pacing advice which sounds very different to the advice you seem to have been given.
Dr Myhill’s advice is that you discover your baseline by reducing and reducing all activity and exposure to stimulus until you get to a point of no symptoms. In reality few people manage this and like me opt for a strong reduction in symptoms. When I did this I was shocked how low my baseline was. I was in bed most of the time, in the dark, no tv, nothing..
But gradually I built up from that. Everything has to be considered activity - having a light on, reading, listening to music, certainly singing, walking, standing, sitting... So I built up gradually. And I absolutely did not exercise. I have not exercised in years (including walking other than walking inside the house or a couple of minutes outside of it) and let me tell you, giving up all forms of exercise was a life saver. My ME has improved a lot since I started following Dr Myhill’s protocol which includes no exercise, and I don’t really relapse, I just steadily, slowly, improve.
So that would be something to consider. Your music is important to you so prioritise that, but I would suggest give up walking and yoga, and you will have more energy for things like music. I have a wheelchair and mobility scooter because walking sets me back so much.
Hope you find something that helps! You’re strong and talented and brave and you’ve got this 💪 xx
Lucinda thank you so much for all of your advice, yes I think you are right my baseline was too high. This month is looking very different so far but I also have come down with a cold which as I’m sure you know it’s game over for us for awhile! Thank you for taking the time to write to me and for all of your support x x
Thank you for being real and vulnerable and sharing ♥️
thank you SO much for supporting me x x
Super relatable in terms of just trying to figure out how to move forward! And also bargaining between feeling so hellish and knowing there are other ME folks suffering worse. It's probably not helpful to compare to anyone but hard to do. You're so blessed to have lovely family and friends around, but I know it's a double edged sword trying to be who you want to be to everyone. Don't be too hard on yourself, this is not your fault! You're doing amazing. I use timers and reminders all day too :) ❤️
BTW I'm reading The Completion Process by Teal Swan which really goes hand in hand with the type of therapy I'm doing at the OHC (every patient is different) - I wish we could jump to the calm part but I think we have to face what's right Infront of us first. You're doing so fab and we are f#cking experts at this illness because we LIVE it. Xx
JennySRP thank you so much Jenny I am glad you found it relatable. Yes it is so hard not to compare ourselves to other people especially with all the social media we have around us all the time! I am working hard on staying calm and looking forward to hopefully working with you guys soon 😊
Awesome video diary, great for raising awareness of ME!
tom8008135 thank you Tom, that means so much! I really hope that these video diaries will help raise a little bit of awareness and understanding x
Great vlog Alice. A real honest peek behind the scenes of invisible illness! Keep your chin up, better days will come
Sweetie, you did good. Chronic illness is so up and down and that's what happened. We understand fatigue, do what you can when you can and no more. There is no one you need compared to. And eff the dude who made you sad.
Instagram gypsy_michelle_price ha ha ha, thank you that made me laugh so much… And agreed! His loss eh ;) x x x
Hey Ella I hope you feeling better now this video will help people understand a bit about your illness situation, good video and emotional ☹️ looking forward to seeing another next month-this month 🌹
jp/jackpot jackpot thank you that’s so kind of you, unfortunately this month has gone way downhill as I’ve had a bit of a cold which tends to knock people with this illness out completely! So lots of rest and vegetables and vitamins for me!! 🙈
Absolutely heartbreaking, Alice. The very real, very raw emotions on show highlight just what a drain it must be on your mental health. So glad you've got some good friends and your brother on hand to give you support when needed.
Graham P yes I am so lucky to have my brother and my friends and family. I would be completely fucked without them! Thank you for all your help and support it means a lot😊
You are the epitome of inspiration!! Yes!! 👏🏼❤️
Char Croft you are such a babe thank you 💕💕💕
🙂
Gareth P thank you so much Gareth 💕
So brave. I completely understand where you are coming from. I have had m.e. for over 20 years and am still trying to figure it all out. Hang on in there, you are doing amazingly well.
You are doing better than you think. And don’t be upset if you don’t even reach your baseline some days, if your body can’t even cope with even meditation sometimes then it’s okay to just rest 💕 I beat myself up all the time too but we are allowed to not always do everything right, just got to to try and accept it (which is so hard 🙈). Also just an idea for your pacing - Have you thought of alternating your yoga and walking'. So you do light yoga one day and then your short walk the next etc so it’s not so hard on your body? I also find my meditation is easier if I do it when I wake up. Keep going. Sending lots of love and support xx
Thank you so much, I think I needed to hear that! It’s so hard when you think you’re failing every day and compare to other people! But onwards and upwards eh!! And yea that’s a good idea with splitting the days! Thanks hun x x x
I feel so related
I'm so sorry that you can relate to this! Not much fun huh!! Sending strength x x x and thank you so much for watching!! x
My heart goes out to you Alice. I just wanted to give you a hug watching that. You’re such a nice and sincere person. Just remember on those really hard days when you’re crashed that good days are on the way. Also on days where you’re really crashed just accept it for what it is instead of dûing anger, sadness, grief etc. I know it can be difficult but it will help you in the long run. Like you say dû calmness as much as possible. Also sorry to hear about your break up. Hope you have a better November! Keep the head up!
stephen quilty thank you so much, yes I must remember that! Sending you a hug 😊
This really highlights M.E in such a real way! Alice I'll say 'YOUR ILLNESS DOESN'T DEFINE YOU' you are (I know) such a beautiful person, (feel the same as we all do with real emotions and love) and you have strength way bigger than many, you keep going,never give up and that takes courage and determination even if each day is different and sometimes you can't. We all make promises to ourselves that we don't or can't keep. So summarising keep going, Keep believing in it will get better (mind health) and you are you and be strong enough to take love,help or company even if that's at home, people love you and friends and family do not judge you because you are ALICE ELLA and that's something you should be proud of, as we are of you. Receive love, receive good days as a sign that it is a step forward (if that makes sense) thanks for an insight to your life. Xxxx
dwfmedia UK thank you that is so sweet of you to say. I’m really glad that you feel this video highlights this illness as that is exactly what I am trying to do but in a very real way! Thank you for your continued support 🌹
My heart is reaching out for you, I am in tears, I feel like I can see my life in this video, you are so amazing and your voice is like a angel! Thank you for all the support you’ve given me and this blog is really honest! 😘😘😘 Saz
sarah prior Thank you so much for your comment, it means a lot. I’m sorry that you see yourself in this as that means you’re probably struggling a lot too. I really hope that you are okay and thank you for your support 💕
ahhh alice you are so beautiful inside and out. i’m sorry for the bumpy month but it’s so nice that you’re doing yoga and meditation and light walking etc, stay motivated!! ooh and congrats on your song, amazing 🥰
Andrea June Trim thank you Andrea, it’s so lovely to hear from you! I really hope that you’re doing well! Unfortunately I haven’t been able to do the yoga for about four weeks now but I am still doing little walks and meditation! Thank you for your support Hun 💕💕💕
How could someone dump you, you are the full package, plus you are one of these natural beauties who doesn't need makeup. Sounds like they weren't the right one for you anyway. I have never been told of the 'baseline' thing before, but not surprising since most doctors know very little about it, and I suspect many don't believe in it. Infact I was told by one doctor I went to, that he didn't believe it was a real illness. I can crash after very little exertion, including mental things such as reading. But other I can go for a 15 minute bike ride or walk ad not feel too bad afterwards, and then even the next day I can feel about the same as I did the previous day, so doesn't usually cause me to crash, so maybe that is my baseline. The problem is that it affects people in different ways, so what works for one person may not work for another, and others are misdiagnosed, when the cause of the fatigue is something different.
But the onset of it in most people seems to be brought on by similar trigger point, which is often Glandular fever, which was also the case in my case. With mine, I feel terrible in the morning with brain fog and just feeling ill. Usually it improves a bit during the day but still lack any energy. I have had all the different tests you can think of , even an MRI of my brain. I have had it for 20 years, but I think the thing I have to be careful of is keeping active and eating good food, as as you get older you can get other health problems if you don't keep relatively active, including heart and joint problems. I think positive thoughts can help, but stress of life can make this hard, especially if you are with negative people. It is an illness that seems to affect perfectionists, and people who are more sensitive. Whether that puts more strain on their body and causes extra stress . That is possibly why things like mindfulness and yoga can help.
Big Kids Toys I’m so sorry to hear that you went through that with your doctors, yes it’s very common for them to not understand it at all! You are too kind! Thank you, but I definitely feel better when I’m wearing a bit of make up ha ha… Shame I can’t be bothered to put any on ha ha! Thank you so much for all of your support, not long now until November’s video will be in the editing suite also known as me in bed with my laptop that freezes every five minutes ha ha🙃