My CFS Awareness Story. Part 2/2
See my previous post for Part 1. I got diagnosed two years ago at the age of 20. Not much of an explanation or help was offered to me, as not much is known about it and not much can be done. I had to quit my job as I could no longer keep up with the team. I had to give up my dream of becoming a nurse after 3 years of education to get there because there was no way I could keep up with that fast pace of their daily shifts, not to mention my cognitive issues that are not even close to being reliable. Everything was struck of me and all in a matter of months. I went from being a social, bubbly, energetic, employed student. To a jobless, ambition-less, unsocial and bed ridden person that I didn’t even recognise. I felt like the life I had worked years to achieve was just flushed away in an instant and all I could do was sit and watch it happen.
On a daily basis I experience excruciating pain and weakness in my muscles and joints that feel like rubble, which is also accompanied by CHRONIC FATIGUE. Do you know what fatigue is? Well imagine getting no sleep for a week and then having to run the London marathon while you have the flu. That’s what we feel like, daily. Yup! I’m a 22 year old woman who actually just bought a walking stick. Not for an accessory, because believe me as sexy as a walking stick is, it’s not actually something a 22 year old woman wants to use believe it or not. But, a walk round town for a few hours is enough to leave me bed ridden for days.
I also experience intense heart palpitations out of no where and such bad cognitive issues that I can hardly remember anything and struggle to concentrate and learn new things. But of corse, CFS is just laziness, right? Wrong. ME is a real, chronic and horrible condition. It’s time to educate others and sympathise with people with invisible illnesses. Because the worse thing you can do to somebody with an invisible illness, is make them feel like they need to prove it or put on a show just to get people to understand. We don’t need to prove anything to anybody, it’s others who need to be educated and understand. Together, let’s stand up to the stigmas! #cfswarrior
My CFS Awareness Story. Part 1/2.
ME (Myalgic Encephalomyelitis) or CFS (Chronic fatigue syndrome) is a chronic long term, sometimes even life long illness that causes the patient various daily struggles, that ultimately change their life. CFS can develop at any age, but is more likely to appear between your 20’s and 40’s, with it also being more common in women.
Chronic fatigue syndrome is what it says on the tin, but also with so much more. It is daily CHRONIC fatigue. Your mobility is restricted, your ambitions are halted, basically it’s like the old you is gone and replaced with an empty husk and in order to survive you need to learn to live in a whole new way. Daily tasks like walking up the stairs, making breakfast, hoovering etc become a dreaded nightmare. Pure exhaustion and weakness is just your permanent state. Sleep does not alleviate your fatigue in anyway and no mediation is specifically made to aid it. Other symptoms people suffer with CFS can include anything from major heart palpitations, flu like symptoms, constant muscle and joint ache, nausea and dizziness, to cognitive issues that also wreak havoc on your daily abilities. It may be an “invisible illness” to most, but to the sufferers it can be the most prominent and devastating thing in their life.
People with CFS unfortunately do not receive a great deal of sympathy, due to lack of knowledge and understanding. I know this from personal experience and talking to many people like myself. I’ve been told various things like my illness is nothing more than a fantasy to justify laziness. People with CFS can receive constant ignorant remarks frequently. I have experienced things being said to me like “Oh you only have cfs? Well that’s just tiredness isn’t it. You’ll be fine”. Or “This is modern life, we all find getting through the day hard, we all want to lay in bed and do nothing, but the rest of us get up and work and manage anyway, so get over yourself”. Just because we smile and appear okay, does not mean we are. It’s time I do my bit to educate people what life with CFS is like and that in fact, it is a very real and serious chronic illness... Read my next post for part 2! 💕
I’m very serious about fundraising for @aidslifecycle
! My first ride from SF to LA was in 2015, then again in 2016...and now, more than ever, it’s critical that we build community around providing services for folks, their families, communities, etc. whose lives have been affected by HIV/AIDS. If it affects 1 of us, it affects us all. ••• So before you head out to run that bar tab, drop a few $ this way & tell your new friends at the club that you’ve joined a mission to save lives! Saving lives is sexy. [link in profile 👆🏽] •• #fightstigma #knowyourstatus #speakup #dosomething #BeardUpFightAIDS #TheBeardedLadiesCA #AidsLifeCycle #ALC2018
We are fighting #stigma
by supporting the #Labeled #film #festival
. Watch #ElizabethBlue
The Movie, participate in the post-screening discussion with the movie producers, delight with the dessert reception, enjoy the music of @KurtBestor
and be part of the award ceremony recognizing Taryn Aiken Hiatt, Area Director Utah & Nevada of the @afspnational
- American Foundation for Suicide Prevention - as #MentalHealth
Super Hero of the year! It's going to be an awesome gala! Get tickets & swag at Labeled Film Festival Indiegogo campaign igg.me/at/labeledfilm. Link in bio!