December 2013 is when it all REALLY changed… full on, for the worse. And I was welcomed into the world of ME or Myalgic Encephalomyelitis (or Chronic Fatigue Syndrome CFS or Systemic Exertion Intolerance Disease SEID). Call it what you will it doesn’t change the living hell that this is. But we aren’t really able to live though, we just exist is various states of suffering. And boy do we suffer… so so many symptoms, either ALL at the same time or in clusters, every second, minute, hour of the day, 24 hours a day, 7 days a week, 365 days a year, 52 weeks of the year.
Some fortunate souls may find that things improve and living returns, but for many the months and years continue into decades. Dreadful isn’t it. And yes it is. Life becomes a daily battle for survival, a hierarchy of needs so to speak. Wake up, how do you feel, what hurts, what works, can you move, can you think, can you get up, can you drink, can you eat, can you take medication, can you get to the bathroom, can you wash, can you get dressed, can you leave the house, can you get food, can you answer phone calls, can you deal with letters, can you pay your bills, can you do your laundry, do you have anyone to help you, do you see people, what about getting to appointments, do others understand, and on and on. And what if you can’t do these things, or you live on your own, or you have families to care for, what then?
So, do you see that just to get through the day we have to focus ALL and ANY energy into just the very basics of life, which are things we wouldn’t have even thought about once, let alone twice, before when we were healthy. And oh, how we ache to do life’s normal things like shopping, socialising, getting out of the house, go on a trip, walk, dance, enjoy life, being able to just do stuff, whatever that is, at a moment’s notice without any consequence or concern.
But do you know what? Yes it truly is a living hell, but what I have found and what I see in others, is that we all have this incredible, powerful inner strength, a united understanding, we are warriors and we will fight to get through every day in the hope that one day, just one day we will be one of the fortunate souls.
So please help further the fight for support, awareness, understanding and research for ME… we want to start living again, not just existing.
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#May12BlogBomb List of Links for 2015
Guest post by MerelyExisting is ME @tweetsforMECFS
I have a favourite saying to all ME sufferers "Just because you make it look easy, it doesn't mean that it is!". The importance of of telling our stories and speaking about our experiences cannot be over-stated. Thank you for writing this - we are warriors, and we not only fight our own daily health battles, but in that weakened state are taking on the mission of raising awareness and making changes to the way we and this illness are viewed.
ReplyDeleteI couldn't have said it better myself. This disease is a daily battle, we most certainly are warriors :)
ReplyDeleteHappy May 12th everyone,
It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future smile :)
https://www.facebook.com/pages/Advocating4ME/1606524889591699