The days with M.E.
Вставка
- Опубліковано 26 вер 2024
- Since I've been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I've decided to film my current life with M.E.
Not that my days are that exciting, but I often receive questions about how I get by, including how I eat, clean, go to the toilet, etc., from both my non-ME friends as well as individuals from the patient community and medical professionals. It might give a unique insight into what the disease forces you to do. I've tried not to hold back on any details, including the private ones, and show a step-by-step guide through my day.
I hope you'll enjoy watching it. There are English, Dutch, French, German, Croation and Spanish subtitles included. I advise you to turn them on to understand my English. 😊
Groetjes,
Anil
_________________________________
Camera and editor: Anil van der Zee
Director and assistent: Grigor van der Zee
Subtitles: Eng, NL, ES, DE, FR
Music:
Audiorezout - Signs of Life: tinyurl.com/2k...
Maarten Schellekens - Deliverance: tinyurl.com/3m...
Audiorezout - Knowing: tinyurl.com/6m...
Docks - Get Well: tinyurl.com/yf...
Phillip's wife Susan here. Thank you for sharing your life with us. It was special to see the wonderful connection you have with your cat who appears to care about you very much. I have had ME/CFS since 1981. I had two years when I was mostly bedridden and spent most of that time sleeping. I gradually improved but my baseline has dropped again and I have been fearful about the future. Seeing how you live helps me see how I could keep some independence if that happens. I think your video will help people understand much better what low energy, PEM, orthostatic intolerance and crashing means.
I have been suffering for years like this…not so that I have a bed in the kitchen or a wheelchair. Not as severe, but struggling every day to stand and walk…bathing…fixing food for myself…surviving while having to lie in bed most of the time. This video accurately shows what we go through on a daily basis…the horrible repetitive nothingness of our lives. I can 2 times a week drive to the grocery store when I am not having a severe day as in a crash. The worst days I can do nothing but stay in bed with severe illness migraine, feeling my body weighs 600 pounds, nausea until that severity passes. People on the outside see us, like myself living alone and have no idea the suffering going on inside our apartment. No one knows and no one cares. It feels like a long drawn out death…yet we persevere, because we want to live. We want a life. We do not want to give up. Thank you for giving others a look at the lives we have lost while still being alive.
From your bed to the kitchen feels like a thousand miles. Feeling at 2% energy at all times, is in itself a mammoth task to plan, manage and cope with. ME requires a strong soul to find joy in the smallest of things. With you in this tough journey friend. ❤ #grigortheprotector
I will be sharing this for #ME awareness day. We no longer can remain the invisible or the missing. This is an extraordinary and profound effort of activism. People must understand what it takes for us to survive with myalgic encephalomyelitis. This is hauntingly beautiful and I wish every doctor in the world would watch this to understand how we must calculate every move and action that we take. It is like walking a tightrope. From the bottom of my heart, thank you Anil. M.Gresko
This is incredible, I will be sharing tomorrow for #MEawarenessday. I think part of our problem is that words can never capture reality, but this is a haunting window into the truth of it. Thank you so much for using your precious energy to produce this. ❤
A million thanks for your gargantuan effort to show the plight of we who exist with MEcfs. Brain fog prevents me from describing the marathon of effort that goes into surviving each day with ME. Your movie is beautiful and haunting to us who know the struggle to stay alive and live a life with meaning. Hugs from Florida USA.
Shared --- thanks Anil, for showing what life with severe ME is like - I feel empowered by your efforts to share your life....and frightened that I will become just as sick. Hugs.
Thank you so much for this moving video. As I live in the USA, I have been unable to find a doctor to diagnose my me/cfs. But I'm hopeful this year it will finally happen. More than that, I'm looking forward to the day when "no one will say, 'I am sick'"! (Isaiah 33:24)
Look up Dr Groysman in Irving TX. He does zoom and is affordable and really helping people truly ❤️ the Lord helps and heals us in Jesus name
This was very moving. I loved the insight into your daily life with Grigor thank you for sharing! I also have severe ME and am mostly bedbound so this is all very relatable unfortunately. Hypercusis has been a big part of my life since being severe as well. I'm really happy this representation of living with severe ME is out there, you captured the tone well.
Superb. On every level. Content. Composition. Exposition. THANK YOU. This is an historic contribution to the fight for recognition and respect. Praying it doesn't cost you too much xxxxxxx
Thank you Anil for sharing your beautifully made video. Im lying here feeling incredibly fatigued and sick from Orthostatic intolerance too. I’m so glad you were able to get an electric wheelchair to help you.
I had moderate ME for two years. I have now had mild ME for almost 8 years. Despite this, I have never endured suffering such as that described here. I sincerely hope your condition continues to improve. You can have a happy life with this disease as long as the symptoms are not too severe. Strength and courage to you my brother. Best wishes from Belgium.
Anil and Grigor, so many things hit home for me with your video. Being at the mercy of an entirely uncooperative bodily system, the effort needed to prepare to leave the bed let alone achieve this, the aids for every day simple tasks, the duvet without a cover, the alarm reminders, the sheer grit and determination. I see you and I hope for much better days to come for you.
And Grigor, what a special wee soul he is. If only more humans had the compassion and love he has in his tiny wee being. Keep finding small joys, beaming your beautiful smile and above all know, you are not alone in this. Through many of our own struggles with ME we are all cheering you on 🙏💚
I watched your video with a few viewers to educate about MECFS on #MECFSAwarenessDay. Thank you from the bottom of my heart for the sacrifice you did to educate others. It's a really good visualisation of how people have to live with this cruel desease.
I had to cry because my Lilly (cat) is behaving the same way as Grigor. It reminded me so much of our worst time together and how her presence helped to live in solitude.
So happy for you you found a better house, with a better toilet and had health improvements. I hope you continue to get better. ♥
If it's okay for you, I could transalte the subtitles to german, so even more people understand the importance of your words. Do you have a transcript? And how can I contact you?
18:23 *16 years!* I’m so f*n sorry, and I do know my sorry doesn’t make anything for you or anybody else with M.E!
But I lack words!
Thank you for sharing Anil. I'm so glad you have Grigor to keep you company and give you cuddles. I hope for a better day for you, too. A day when you can dance again.
Such an incredibly moving film!
You‘ve really captured what is often impossible to describe with words. Thank you so much for spending what must have been lots and lots of energy for you.
Yes, this 20 minute video has depicted it so well. It feels more precise than any full length movie so far. Not criticizing the full length movies, but Anil's film just captured it so perfectly. This film is the translation we so desperately need so people understand better.
Wow thank you so much for sharing your life with ME. I suffer from it as well. I was almost as unwell as you in the beginning but fortunately my condition has improved to a degree. As long as I pace myself and rest lots I can do things little by little.
You hardest part for me has been the lack of understanding in the medical profession and other people's "helpful" suggestions.
God bless and be as well as you can be🙏♥️
Thank you Anil, for sharing this video with us. What a warrior you are, fighting this fight for so long now, and still with so much dedication, with the little energie that you have. I hope and pray that they will find a treament for us.
Thank you Anil this must have taken so much precious energy . I also have severe M.E i find explaining to others impossible i will share your video today for M.E awareness day. 🫂💙
Artful and powerful.
You and Grigor give me hope.
Thank you so much for sharing this.
Thank you Anil 🌹❤🫂 for this valuable and poignant testimony. So beautifully and artistically done as is your wont. You are still the artist and will ever be. Spreading the word on #MEAwarenessDay
Thank you Anil and Gregor for sharing this with us. the world must have seen that!
Thank you Anil
Thank you Anil for making this film. I have shared it for world #ME day. Sending you lots of love from a fellow Exello chair user ❤ wishing you all the best.
No words seem adequate, ❤❤ to you and Grigor ❤
Humbling to watch, even from the perspective of a person with comparably moderate ME/CFS. Thank you Anil, for sharing this in such a raw and relatable way.
Wow what an incredible video. Thank you for sharing!
This was a very moving and powerful video. The tears are flowing. Thank you for sharing Anil ❤️
Thank you for holding on 🥺
❤️
Beautifully done Anil. Very impressive. Thanks.
Thank you, Anil, from Australia x
This is such a profound work of advocacy, of art. It has touched me so deeply. This should be mandatory in every medical school. ME is an invisible epidemic to begin with. And the severe are even more invisible as our systems do not provide any way for the severe to be seen, treated, helped.............. I have such deep respect for you, and the deep love of a fellow person with ME. I feel like we live in a parallel universe that few if any people who don't have ME can fully understand as it impacts and alters every aspect of life. I am so thankful for the online community where we can more fully see and hear one another; and see ourselves reflected in the lives of others.
Awesome, a superb balance of the personal and the science. His attitude is also right on target, realistic without being to angry or defeatist. The production fully realizes all of this as well.
What a true friend and companion you have Anil in Grigor. You are both amazing
This was beautifully made and very moving. Thank you for making and sharing this-you are an inspiration (along with your lovely cat!). I'm a fellow sufferer and will be sharing your video tomorrow as well.
Thank you for spending the energy to make this. I often wished I could document my most severe periods so that people could understand what it was really like, and why I wasn't even able to reach out for more help.
Incredible job getting that footage. Thank you really really well done. Costly but your helping many of us feel seen.
This was incredibly well done Anil, beautifully shot and very important for the world to see. Thank you for using your energy to make this.
Thank you so much for the effort and sacrifices it must have taken to create this and share it on behalf of all of us, especially when often so many are too exhausted to make our voices heard. Thank you.
Quick suggestion: Can you get a red flashlight? Amateur astronomers use them because red light is less disruptive to your night vision that you have to build up before going out in the dark to stare at the sky.
I have a chronic illness too and I know how frustrating those suggestions are. I hope it's helpful. I have trigger point balls on my coffee table and I learned about them from watching ballet. Having to become your own researcher while being chronically sick is just the worst.
Lots of love from NYC ❤️
I cry my heart out. I have it to but not everyday like you. I feel so much understanding and feel the worst days pain, strruggle, loneliss emotions coming up. I feel so bad for everybody with this. Its Hurt me so much and the other way i feel lucky That i got beter days somethimes and feel air for life again. Also everyday is a struggle. Im sorry everybody go true it. And sorry for myself for trying always to fight when i see your video every year struggle, unbelieve, fight comes out my eyes. Can not stop crying
This is an incredible achievement and very moving.
So powerful Anil. You are not alone in this.
Thank you Anil ❤
Thank you Anil. Your experience resonates so much with what I know of my friend's experience. Thank you and I will share. #millionsmissing
Encontrarán una cura para la Encefalomielitis Miálgica, tengamos esperanza. Mi gato también es mi fiel compañero en este duro camino. Abrazos desde España 💙
That was so real and touching Anil ❤
Thank you for being brave enough to share your intimate space so others can see our world 🙏
Stay strong and keep up the hope. I was like you for years. However, now and then, I can briefly leave the house. I could never have thought that was possible!
We never know what's around the corner. Love and strength to you xx
Thank you also to the filmmakers .. beautifully done.
4:48 Hi both you and Gregor the cat is naturally beautiful and this “black-and white” setting, highlights it further, moreover, more importantly I can feel another beauty coming from you inside I guess is the closest thing for me to describe it. I wish you so much good and English isn't my first language so I hope this next part makes sense, but I'm only 1/3 or so into this video and yet you've managed to bring out something profound in me, a deep sense of love and respect for you, a very human reaction of humility to the hardships you face daily. ❤️
With kindness and respect, Grace 🌱
(I initially wrote “you and Gregor the cat is picturesquely beautiful, but I felt unsure about how that would be interpreted, hence why I chose a very telling, not interpretable version. Please if you feel you’ve the energy let me know if my initial word use would have been “right” or if it’s supposed to be used for another type of situation)
Stunning piece of art. An incredible achievement 💙
❤
Thank you for showing us your life - although im very sorry you are so sick ❤.
I have M.E too
Most of the time severe
I also have a cat
Never give up giving up
♥ Thank you 🙏
❤️🙏🏻
Heel erg knap gemaakt. Bedankt om een inkijk te geven in je dagelijkse realiteit. Ik hoop met je mee dat dit veel bekeken wordt.
💯🙏🙏 Amazing job. Never give up hope
So well done, Anil! Wonderfully produced. Thank you for sharing a day in your life. 🙏🏼
so proud of you both !!!!❤
Grigor's tenderness towards you made me laugh and cry! Such an incredible film. I can't imagine how hard this was for you to make Anil. You are such a strong, brave person and really, after a very tough day with this disease, you've given me a lot to think about and some hope. Thank you ❤😺
All the best to you Anil.
Impressing video, Anil! Like Eline Vere of Louis Couperus. Of breathtaking beauty and horror. Carla Rus
My thoughts and prayers are with you and all with ME. ❤️
Impressive.. Thanks for sharing this with us. It is an extremely hard battle, day by day. I know it from my own experience on my level, but I feel blessed what I can do sometimes in comparison to you. Feeling of poisoning I recognize.
No words can be said then deep respect...😢 You are a hero.
🙏🏻
💙💙💙
I’m so sorry 😢 Just subscribed and liked. I have chronic fatigue and pain but not to the same severity. Hopefully you’re able to monetize from yt. Sending much healing vibes your way 💗
I am so glad you have a friend like Grigor :)
Thank you so much 💝
Thank you for this. It is needed for awareness and advocacy. I am now 25 yrs into this dreadful illness. Some days it about just surviving, not really living.
Thanking u with my heart for the courage it took to make this video so that the world can better understand the ravages of this hidden , misunderstood disease.. I am 3 years into long covid, and have me/cfs, among other disabling phenomena.. as a dancer from childhood and a fellow animal lover I listened to your words with my heart.. you are a inspiration to all a mentor to those is us struggling with a silent disease.. a light in the darkness.. love the unconditional bond u share w your furrbaby, your courage, and your soul.. may angels embrace u and bring u peace in the night🙏❤️😻😇.. wish I could visit Amsterdam again.. 🐈🐈
much love
Bedankt dat je dit hebt gefilmd. Ik hoop met je mee
Hey Anil don't give up buddy!
thank you, Anil. this is so incredibly beautiful.
sending you much care, stamina and solidarity,
from another PwME
💙
Looks like my ME/CFS life. Punished for living
Many thanks to YOU and your sweet Grigor. I now have a glimpse into the world of ME.
We need more awareness #millionsmissing
That was very powerful. ❤
This is heartbreaking! I'm so sorry you're going through this. Do you live alone?
This is brilliant Anil, I can’t imagine the effort that went into making this! I hope it helps to educate people as to what we go through every day with severe ME. Solidarity to you and Grigor from me and my cat Amy ❤
(PS. Has anyone ever told you how much you look like Pep Guardiola? 😅)
😢 Solidarity. 🙏 Thank you for sharing. ❤
Thank you.❤
Hello dear Anil, as a fellow sufferer of this cruel illness and as someone that has followed your journey for many years, I wanted to say thank you from the bottom of my heart for making this video and for everything you do and have done over the years to raise awareness, despite the toll and suffering that then causes for you afterwards.
THANKYOU Anil, my thoughts and best wishes are with you and every single person affected by this illness. We can never give up hope, not matter how hopeless it all feels sometimes. For myself it feels like it's getting harder to hang on, but one thing I've learned over the years? the people in the #mecfs #pwme community are some of the bravest, kindest, most caring loving, supportive warriors I've ever met and it's truly been an honour being a part of such a community, even though my contributions are minimal and my time able to spend amongst them is limited.
This community has been a true blessing in my life and the reason I'm still here. Thank you Anil for being a part of the reason I've been able to dig deep and find that hope and fight to keep going. Thank you to all of the #mecfs community, I owe you all my life 💗💗💗 I wish you all peace, love, joy, as many pain free or easier moments as possible, I hope you can always dig deep and find those reasons to keep going. If you can't? then reach out amongst the #mecfs #pwme community, they will help, they will hold you up, they GOT you. You're not invisible or forgotten, we all SEE you, I SEE you and love you all xx
p.s Grigor stole the show btw!!! He is a superstar and so handsome!! 😻🌟 I loved seeing the bond and love shared between you both, I'm lucky to have my own 'Grigor' expect mines female and is my favourite 'person' in the world #proudcatmama #catsarelife 😻❤
9:30 Hi that must be of such importance for the feeling of one’s own dignity. How amazing there’s aid like that, and of course your electric wheelchair appears to have made an immense difference for you in many areas. (I appreciate that what I have written is a lot of assumptions, and I hope you don’t feel like I try to claim that this is 100% true for you)
I read your text in the description box, and I wonder if you would like to have company from someone? Maybe someone with a disability, but not the same, I write this because I personally feel like it would be stressful, if I’d (I’ve a physical injury that prevents me from doing a lot) someone here with me who didn’t had any previous experience of living with a chronic “illness” and didn’t had the understanding of what’s like wanting to do things, looking like nothing is wrong, but personally knowing that I’m physically hindered from being as active as I’d like.
All my best to you (I’ll keep watching now 😇) 🌻
My heart is with you, Anil and Gregor.❤
Thank you.
You can heal, 100%, by following the mindbody theory. Read the Divided mind, the way out and Breaking free. Good luck, you can get your life back.
Just like my life, bed or sofa
Thank you. I think you are right you are being poisoned. I felt like that for the first 9 years, nausea in every cell, etc. i think our bodies are trying to clear toxins, pathogens, viruses, different for everyone probably? And we get the same symptom as being on chemo, the body can’t clear the die off quickly enough, it floods our systems and makes us feel so awful.
i noticed this got worse when i took herbs to clear things. It started changing for me when i used a rife machine which could be stopped when my body became overwhelmed by die off and went completely after my partner remediated our house for mould.
i am still ill, life is not normal, but that host of hideous suffering is so much rarer now.
I love your cat. Xxx
I ❤ Grigor
Also thank you for sharing this. I know it was a massive effort to make this short film. It is very powerful and hopefully will spread some awareness of M.E.
Just saw your tweet about this video. I have no words really. Let me know if you just want to talk to someone.
Dankjewel voor het zo goed in beeld brengen van me.... echt geweldig gedaan.
Jij hebt ook een kat, hoe doe je dat met de kattenbak? Ik merk dat dat mij steeds meer moeite kost :(
~~❊💚❊~~
Have you tried cutting milk completely out of your diet? For some reason milk makes me feel just like this, all day. It's awful. I had to cut it out from my diet. I do have lactose free cheese which doesn't seem to bother me as much, but I'm sensitive to milk in general lactose or not.
Another thing that helped me is weirdly adding more fat/red meat/sugar/salt in my diet. All the things people say are bad for me, literally keep me from dying. I will pick lean red meat, lactose free cheese pieces, oatmeal cookies, things like that as snacks, and it helps make me feel more normal. If I don't I will pass out or feel extremely out of it.
What is your dominate daily mood? Are you mad or sad or is your mind blank?
Ooooh, if only people diagnosed with ME/CFS were interested in their electromagnetic environment.
Poor guy, there are plenty of radiations around him that are destroying him.
Disrespectful and disgusting comment
You are awesome. And infinitely strong. You are battling an immense debilitating illness. I wish you all the best. Praying for a medical breakthrough. You deserve it. Stay strong Anil! 🤍 Werner
Thanks for taking the effort to make this.
💙