#mecfsawareness

[alishawhittam]

Right now Coronavirus and the new variant are all over the news. For people with severe health conditions, we don’t have the luxury of crossing our fingers and hoping everything will be okay. 

Maybe it’s worth checking if you need a booster vaccination or to order some masks and antibacterial hand sanitiser

I haven’t written this to alarm anyone or to add to your worries I’m just pointing out who may need to take precautions and if you qualify to have boxes of Rapid Lateral Flow tests sent out to your home address (save a few quid too)

Always do your own research and do not give anyone else the chance to sway your decision as at the end of the day it will be you who is affected by your decision.

I understand that it is difficult to read if you are experiencing Severe ME symptoms so why not try listening to opposing arguments on a podcast or a TED Talk? Most videos on YouTube now have chapters in the video description, this will allow you to only listen to the parts you want to.

If you have been able to arrange to have your vaccinations at home please comment below the local council or borough you live and if it was your GP or 111 you had to call, this might help another sufferer who only has the energy to make a call. We all know that feeling 🫶

Sending you all love and strength 

Alisha 🫶

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[myalgicencephalomyelitiscfstom]

From Mirame Arts:

We have produced a short film about #MECFS patients‘ prejudices. The film shows artistically how the disease isolates patients by breaking even their closest bonds through a lack of understanding from friends, partners, and relatives.

Director: Béla Baptiste

Camera: Edward Bally #WorldMEDay #mecfs #mecfsawareness #mecfsawarenessday

[iplaywithstring]

This is a hard read, but people really need to understand this. Post-viral illness isn't new - and Long Covid wasn't a surprise for people who understand ME/CFS. I don't think people realize the effects and just how bad it can be, even for people who were healthy. My ME/CFS is mild/moderate - that means that while I do have limits on my activity, I can still leave the house, take care of myself, perform most daily activities most of the time. If I do too much, that changes and I end up with days or weeks of lowered activity levels. Sometimes I can't be on my feet more than a few minutes at a time. Sometimes I'm too weak to pour myself a glass of water. Sometimes speaking, reading, or even following a conversation are difficult. Again, this is mild/moderate ME/CFS - I'm one of the lucky ones. There isn't enough understanding. There isn't enough research. There's a persistent cultural idea that if you do the "right" things (eat well, listen to your Dr, take whatever medication, exercise etc.) then you will recover, which leads to this underlying assumption that people who don't recover are somehow not trying hard enough or exaggerating or wanting to be sick. I promise this isn't true. I've seen numbers ranging from 10-30% of covid cases still having persistent symptoms after 12 weeks. For some people it's been over a year. No one knows when or if they will recover, but even if every one of them does, there are still millions of people with ME/CFS who are living in similar situations with similar symptoms who don't have access to support, care and services they need.

[itsilianasandoval]

Knots In my Hair

There are knots in my hair; I haven’t showered in three weeks. It’s getting hard to walk those three meters to the washroom. Things will get better soon, though. I’m only 20 years old, and this is just a virus. Right? - Iliana Sandoval

[sicksicksixx]

here is a gift that being sick gave me:

my world is now slow and centered on rest. i sleep when i need to sleep. i lay when i need to lay. i found a “regular” sleeping schedule for the first time in my life, born of a need to sleep 15+ hours a day. but there is a rhythm to my life where there used to be absolutely none. i was not someone who could do the same thing every day. i had to nanny AND drive a cab AND read tarot AND work in a bookstore. i had to quit my job and move across the country every 18 months. i had to stay awake to get in all the books and shows and media i wanted to consume. i never stopped consuming.

the irony….

now my days are all shaped the same, but with that comes a stability that was completely foreign to me at the start.

i found out a secret. rest is sacred.

this is the biggest “mask off” moment i’ve ever faced. the constant grind, the sleepless nights, the pushing and pushing and pushing— it kills. i know that’s not what made me sick, but it also meant i never ever ever ever had even a moment to heal. for years.

here’s another secret: rest days aren’t the same as recovery days.

when you’re forced to sip your free time by the spoonful it can be impossible to know the difference. but real rest only happens when you’re not already burnt out. you have to store up rest, not just refill the parts that spilled out that day. you have to take it wherever you can get it and treat it with the same reverence you give nature and adventure, because it’s at the core of everything.

before rest, i was never happy. i drank a lot. my anxiety was unbearable. always. i was running from rest, from slowing down and facing myself. now it’s just me and myself all day, every day, and we’ve actually become very close.

i sleep 15-20 hours a day. i have about three to five hours a day most days where i am awake, and in a good enough to state to do anything at all— sit up, shower, write, read, create. but i look forward to those three to five hours in a way that’s completely foreign. i don’t fight rest, i don’t favor my hobbies or friends over rest because i have time for both. i go to sleep eager for feel those moments of mild respite, i embrace rest whenever it finds me.

rest is healing. it’s my only hope for moving forward and not backward. i cannot believe i ran from it for almost thirty years. i promise to never run from it again.

[johnlinneyphotography]

Little Steps. My partner/fiancé @kateboyceart pictured taking a photo in the discovery garden at @eastriddlesdenhall_nt . It’s been a tough few months for her as she has to not only live with M.E./CFS but also other related health issues that have curtailed her ability to go out or work. These small steps towards a more normal existence are very welcome, particularly as I love sharing experiences with her. We both know there will be setbacks along the way but we try to enjoy the good times and adventures however small they may seem to many. #fujixf56mmf12 #fujfilmxf56mm #fujixt30 #fujifilmxt30 #eastriddlesdenhall #daysout #mecfsawareness #yorkshire #yorkshirephotographer https://www.instagram.com/p/CdvDc_tIs1L/?igshid=NGJjMDIxMWI=

[theoriginallunafate]

ME/CFS Resolution in FL

In case you missed it, May is now MECFS awareness month in Florida!

[terapiadehilos]

Today is M.E./C.F.S. awareness day. A while ago, @prillytee from the @chronicmarketplace asked the M.E./C.F.S. community what would we do if we were well tomorrow, and proposed we create a piece of art with out answer. Many artists have poured their hopes and wishes to create their answers in different mediums, which you can see in the video I shared in my stories and The Chronic Market has shared in their feed. This is mine.   Let me preface this by saying that I am one of the lucky ones. I can function, I can work, I can get out of home if I need to, I can lead what to outsiders may look like a normal, ordinary life.  And yet... Of all the things this illness has taken from me, the one I really wish I had back is the ability to be the mom my kids deserve to have. The mom that goes to all the functions. The mom that walks them to school. The mom that plays with them on the floor. The mom that can listen to a full recount of their day, even if it lasts forever. The mom that is there. What I miss is not who I was, but who I could have been for them were it not for ME-CFS. Mom guilt is overwhemingly real, and when dealing with a chronic illness even more so. It's the side effect I wish most away.  If tomorrow I was well, I would be the mom my kids deserve to have. And you, my fellow M.E./C.F.S. warriors? What would you do if tomorrow you were given back all the energy that chronic illness has taken away? #mecfsmom #mecfs #mecfsartist #mecfsawareness #mecfsawarenessday #chronicillness #chronicillnessandme #motherhood #spoonie #spooniemom #spoonieartist #ifiwaswell #momoftwo #embroidery #embroideryisart #embroideryhoop #hoop #bordado #fatigacrónica #diamundialdelafatigacrónica #encefalomielitismialgica #myalgicencephalomyelitis https://www.instagram.com/p/COx-utyLzb6/?igshid=1eeiigmejet5x

[alishawhittam]

ME/CFS Myalgic Encephalomyelitis Symptoms

Over the past few weeks I have had a difficult time with my illness here is my real-life description of Myalgic Encephalomyelitis symptoms. The pain takes over the whole of my body every single muscle feels like it is screaming in pain with me, and every part feels like it is working against me. Laying on my left side always seems to be the least painful, I must stress that again it is the least painful but every single part of my body still hurts. A medical professional always asks you to give them a score from 1 -10, 1 being the least pain and 10 being the worst pain you have ever experienced, laying on my side brings the pain to a 7.

When I get like this every function hurts, I can't talk noise hurts me physically, and light causes immense pain so my life is spent in a dark room with no sound. The ability to even think seems mismatched, and I cannot think straight. It sounds awful to say but I know how much pain it will take to go the bathroom so I will hold in going for a number 1 for the longest time, this itself will cause additional problems as your body doesn't function well if you hold your urine for such a long time. I can't eat at times like this as the pain leaves me with no appetite but even if I do feel hungry lifting a fork or my arms going up to my mouth is too much pain so I have to rest in between bites as your jaw aches or bringing your food to your mouth becomes too much, it's like a disconnect from your brain to your arm you want your body to do the action but it doesn't happen your arm feels like it gets heavier.

Not eating or drinking leaves your mouth dry which is never a nice feeling or a pleasant taste so I try to position my drinking bottle so I can keep my straw in my mouth leaving me to take in water when I feel able to. I learnt very early on that I needed to use a bottle or cup with a lid as I would spill drink over me or drop cups to the floor. Unfortunately, I do still drop things a lot and the laminate flooring at the side of my bed looks awful.

Medication

I have to take medication every day to help manage my pain. In the mornings I take 40mg of Zomorph this is a slow-release capsule and I take this twice a day 12 hours apart. On top of Zomorph I take Gabapentin, Mefenamic Acid and Propranolol, the Gabapentin helps manage the pain and the propranolol helps me manage my anxiety. At lunchtime, I take Gabapentin, Mefenamic Acid and Propranolol again. On top of my pain medication, I take Omeprazole as I suffer from severe acid reflux. Evenings I take Zomorph 40 mg Mefenamic Acid, Gabapentin, and Propranolol again but we add Amitryipline, Duloxetine and Hydroxyzine. These tablets help me get to sleep and in most cases stay asleep as I can get very itchy with extremely severe hip and pelvic pain, being itchy and not having the ability to itch is torture within itself but when I am really bad I just do not have enough energy to scratch, I do have an extremely large scratching tool which is useful at times but a lot of the time I use controlled breathing and the power of my mind, sounds silly but it helps. I must stress that this does not take the itch away but focusing my mind to stop me scratching the itch can work for me. I also have Oramorph for breakthrough pain.

One thing I learnt early with this illness is to try to do the minimum on regular tasks so I can conserve energy for things I enjoy doing, this could be watching tv with Graham when he gets home from work or giving Alfie a butt scratch which makes his little tail wag with happiness. One of the first things I bought was walking sticks when I was first diagnosed I found walking extremely tiring so using a stick helped me maintain a little energy as the sticks helped keep me upright. As this later led to using crutches and then buying a wheelchair I was still able to spend time with my family. I felt self-conscious and worried about other people's options in the beginning, learn from my mistake please don't ever be afraid of investing in something that will make a difference in your life if it helps you then it doesn't matter what anyone else thinks.

Technology

Using crutches or a wheelchair within my home meant I needed to make changes in doing the simplest things like putting on the lights as using crutches within your home needs light to see where you are going as a crutch slipping on something wet could mean a fall which is the last thing you want. So I invested in Philips Hue lights within our hall lamp downstairs and on the lamp in the hall outside our bedroom as well as our bedside lights. So with the help of Siri on my phone or Alexa throughout the house, I can now turn on our lights using my voice. I can also set the lights to come on at a certain time or sunset, this helps with security too as this is something that worries me a lot. Our central heating and water control was in the kitchen when I got ill so if I was home alone I would have to go downstairs to put on hot water for a shower or to turn on our heating. So we had the Nest system fitted so now I can control the heating or water on my phone or use Alexa or Siri voice control. Upgrading technology at home made a huge difference to me mentally as it has helped me stay independent even if it is just to turn a light on myself. It may not seem a lot to many but repetitive actions like putting on a light or turning it off when you leave a room means stretching from my chair or having to balance one crutch if I am using my crutches using technology means that I can conserve that energy to do something that makes me feel a little more like me even if it is to watch a rerun of "not going out" with my Hubby.

Essentials

For safety, my occupational therapist insisted on having a second bannister installed onour stairs. This was referred by The ME Team at Broadgreen Hospital, the therapist spent a long time with me going over the things I do and how I could stay safe while conserving energy and depending on my home they may refer other things. I admit that I pushed back on a lot of things as it made me realise how ill I am and that was difficult to deal with in the beginning. From my bed I wanted to be able to be sat up straight or propped up to watch TV or read a book so they arranged to have an adjustable back rest to be delivered to me. I also had a mattress sent to me which helps relieve pressure points this gave the additional benefit of not having to push up from a sitting position ( I hope that is understandable, it means that when I put my feet on the floor they are in a natural position as I am not too far down as the bed is the right height now ). As my bed frame is metal I use them for support when I need to go to my bathroom within the bathroom they arranged to have a toilet support so I did not have to rely on the sink for support when I stood up from the toilet. The next thing they arranged was to have a stool for the shower, I can not recommend this enough, even if you do not think you need it and you get tired as the day goes on having that place to sit while I get clean makes a huge difference.

Spoons

If you haven't already read the spoon theory here is a link https://www.youtube.com/c/christinemiserandino. Christine was able to put into words what so many of us tried to say. While you may not think that you need a lot of things or adjustments to live life with ME or any other illness that makes you exhausted please speak to your GP or your ME Dr in some cases you can even refer yourself to your local council. If having a shower takes 4 ( just an example ) spoons, having a shower sitting down on a shower stool might only take 2 spoons or not having to go downstairs to put the heating on would save you that spoon, not putting lights on when you go into a room or when you leave the room would again save you those spoons. All of this would save you energy throughout the day allowing you to do something you want to do, this alone could make a huge difference to your mental health. Living with any illness is hard when I first got ill I went through some extremely dark days as this illness was taking everything from me and the worse I got the more it took. I went from a Mum who was working full time, going to the gym, and being able to spend time with my family. At the weekend we had amazing friends and a fantastic social life having that all taken away, I even needed help to go to the bathroom as I couldn't do anything for myself. The more I pushed against it the worse I got I would be alone all day in a dark room in immense pain all day every day, I missed out on so much and I didn't want to live like that.

Topping up the Dopamine and serotonin tanks

Now I survive and I do everything I can to help save even half a spoon to do something on my terms which means that I can FaceTime Becks ( sometimes I don't even talk I just listen to her ) even if it is a cuddle with Alfie but being able to do that after a bad day or week makes a huge difference to my mental health, I look at it like topping up the Dopamine and Serotonin tanks. This illness has no cure and you can try to fight it with everything you have but it will win, I know that from experience. So do all you can to accept this illness on your terms, invest in anything which will make a difference to the energy you use, ask for help from your GP and work with your local ME team. I have listed some of the items that I have purchased which make a difference to me if you need help please email me I am always available to help, I may not get back to you straight away but I will get back to you.

GlamSticks

Knowing that I needed crutches to get about I searched online unable to find something different to normal hospital crutches. I came across Glamsticks after seeing an Instagram post I think, thinking back I remember that a celebrity had used sparkly crutches at an award show and mentioned them in an interview. So I did a bit of research and found out more about the company. I emailed them to ask if they would just do all black for me and they really impressed me from the start. Since then, I have bought my crushes as well as a walking stick and 9 years later they still look amazing. The link is below if you have something in mind ask them as they are so accommodating. 

I hope that this is helpful in some way. I have also done a video recently talking about the sorts of things I keep in my bags so they are ready to go or grab in an emergency , Click to see What's in my Bag

Click here to see the full post on my website

[myalgicencephalomyelitiscfstom]

All on the Board is in London, United Kingdom.

Sending love to everybody affected by ME/CFS. It’s a long-term condition with a wide range of symptoms. Unless somebody has this condition they don’t know how exhausting it can be.

#mecfs #mecfsawareness #myalgicencephalomyelitis #chronicfatiguesyndrome #allontheboard

[journeyofdiversity]

Healing is not linear 💚 ... and sometimes you feel like your own ghost in your own life! 💜 Heilung verläuft nicht linear, Fort- sowie Rückschritte wechseln sich gegenseitig ab und manchmal bedeutet Heilung sogar Stillstand. ⛵ | | | #nichtgenesen #tbt #reha #longcovidrecovery #selbsthilfeblog #unsichtbarkrank #entstigmatisierung #hypothyreose #gesundheit #mecfsawareness #bewusstgesund #chronicfatigueawareness #autoimmunthyreoiditis #postcovid #happymoments #fibromyalgie #pacing #lwssyndrom #spoontheory #bewusstleben https://www.instagram.com/p/ChaU7XNo2n7/?igshid=NGJjMDIxMWI=

[itsilianasandoval]

Slanted Walls

Everything looks blurry. I’m holding onto walls; I’m resting on the floor. People have started to tell me they would never give up like I have. But when did I give up?

- Iliana Sandoval

[danika-alice]

Do you ever feel like time is just slipping away? I do, a lot. It’s horrible it’s intrusive. How do I deal with it? How do I deal with intrusive thoughts that I’m running out of time? I ground myself I tell myself it’s okay to feel the way I do because validation is key Then I remind myself that life is not a race, it’s not a competition and we are here to live the best lives we possibly can I breathe, I gulp in the air and feel my shoulders drop and I unclench my jaw I do a bodyscan to release tension I listen to an upbeat happy song I remind myself that although I feel like I’m losing time I’m not, I’m purely just living. society really does pressure us to have everything figured out in our early 20s but with how the economy is and such it’s pretty hard to tick the list of things we are supposed to have achieved by now. This hypothetical list can get in the bin. Treat yourself with the respect, kindness and love you deserve. You may not be where you imagined you like be in life right now, I know I’m certainly not but you are definitely here in this moment living and breathing. Did you smile today? I hope so, celebrate that! And if you didn’t, if you are having a hard time it’s okay, If you cried that’s okay too! All emotions are valid and we need to be able to express them. Being able to fully express our emotions leads to better communication with the people in our lives which leads to connection. Today, I just want us all to celebrate that we are here right now no matter what we are feeling or where we are. WE GOT THIS! ⛅️#mentalhealthawareness #mentalhealth #borderlinepersonalitydisorder #chronicillnesswarrior #mecfsawareness #mentalillness #bpdawareness #cptsd #depression #fibromyalgia #cfs #mecfs #endometriosis #ibs #chronicpain #sciatica #nervepain #chronicallyfabulous https://www.instagram.com/p/BphXlntncQC/?utm_source=ig_tumblr_share&igshid=kyf73km1tlj8

[crossroadz-home]

I have not used tumblr one ages not sure if people over the age of 30 use this? My healthy battle has been intense. I basically nearly died last year bringing me to my second near death experience. Thankfully I’ve progressed abit this year but still have a long way to go such as relearning to walk and use my muscles,bones etc so I’m working with my neurological physio too aswell as medication and being a bit of a guinea pig.

[paupainstudy]

Do you have chronic pain?

Have you experienced chronic pain for three months or more? Are you between the  ages of 18-25, and a resident of the United States?  

If so, please consider participating in this research study testing whether a brief, online  intervention for chronic pain is helpful. You will be asked to think about your pain  experience to answer questions and watch 1 video for this study: The Uninvited Party  Guest. For more information, or to participate, follow this link:  

https://paloaltou.co1.qualtrics.com/jfe/form/SV_0uH33n6JiJtNmgC

[shashiks777]

#MECFS #MECFSAwareness #MECFSInternationalAwarenessDay https://www.cdc.gov/me-cfs/pdfs/Could-You-Have-MECFS_508.pdf (at Creations of Shashikant Sharma) https://www.instagram.com/p/COxwB9lHqbY/?igshid=1uy9evjkbzi0n