Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.
I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!
I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!
If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.
Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.
If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.
Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!
I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)
At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.
My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)
On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.
How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??
Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.
I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.
Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.
ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.
And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.
What have your greatest losses been over the course of your illness?
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)