So I’ve talked recently about respect, and thinking about how you’d like to be treated. These posts both came about because of discussions happening within the disabled communities.
There’s a lot of disability discrimination in this world. By employers. By businesses who don’t have accessible entries or bathrooms. What’s the point of having an accessible restaurant, what the bathroom isn’t accessible? Or, if there is a disabled loo, but it’s being used as a box room? The late, great Stella Young was so passionate about these things. I wish I had her way with words, and frankly, her balls to confront these issues with businesses etc.
I’m going to talk a bit about me now. But it’s still on the disability topic.
I’m 33, and have battled Myalgic Encephalomyelitis, or more commonly, (and stupidly) known as Chronic Fatigue Syndrome, for 24 years. Oh and don’t forget that Syndrome part. That is what pulls all the crazy and horrible things my body does together under the one banner. Chronic Fatigue. WITHOUT the syndrome part is just one symptom of a large number of other debilitating diseases and conditions.
I got sick in 1991, following what my doctors thought was Glandular Fever (Mono in the U.S.). I continued with my schooling and reduced extra curricular sports and music. But I rapidly got more sick, and was referred to a Paediatric Immunologist. After a year, or more, I struggle to remember how long exactly, and after pretty much every test known to mankind, my doctor diagnosed me with C.F.S. At the time, Myalgic Encephalomyelitis was only rarely used in Australia in those days, mostly, as I understand it, due to following the U.S.’s lead in moving away from M.E., to the pretty crap, diminishing of the severity name, C.F.S.
The usual process for diagnosis of M.E./C.F.S. in the early 90’s was essentially a process of elimination. All the usual suspects are tested for and removed from the list of possibilities. An odd criteria was that symptoms had to have been present for a minimum of six months.
At the time of my diagnosis, my antibodies for upper respiratory tract, and gastrointestinal tract were all but non existent. I had no ability to fight almost any sort of infection in those areas. My cortisol production, which is a bloody important hormone, was shot. Instead of a fluctuating redding throughout the day, my readings were flat. As in like a pancake. My joints were already showing moderate problems with stability, causing pretty nasty pain for a child.
My diagnosing doctor took somewhere around a year to put a name on it. In hindsight, she initially ruled out abuse (a sad factor that any doctor has to rule in or out all too regularly.). Then with blood tests, she ruled out cancers and most autoimmune diseases. As she dug deeper into my blood work, it because all too clear my system was not doing what it should. I suspect she also ruled out depression via observing me. Although the I have some bloody hellish moments where I’m in a really bad headspace, it’s by no means anything like a clinical depression.
I gave so much blood, and peed in so many cups in that one year!
I don’t remember there being any big emotional “oh no” moment when I was finally diagnosed. As a nearly 11yr old, the blind optimism of childhood kept me believing that I would get better.
Months passed. They turned to years. My great diagnosing doctor was moved to the children’s oncology department, and I struck two of the most useless, stupid, arrogant fuckers anyone will ever have the misfortune to meet. I was lucky I had a strong advocate in my Mum. One phone call to my diagnosing doctor and I was back seeing her.
My health became somewhere stable, in that I wasn’t getting any sicker, but I certainly wasn’t getting any better either. All sorts of treatment ideas were floated. But most were dismissed as too risky. The two regular treatments I had at the time were vitamin B12 injections (into muscle!), and low dose long term use of antibiotics to hold back the endless infections I’d been getting. I know antibiotics can weaken the immune system too, but I was under close supervision, and it seemed to slow the rate of contracting infections.
I saw alternative medicine providers too. Quacks. All of them. I look back and shudder at the amount of money mum spent on trying to find answers and cures. Snake oil salesmen taking advantage of desperate patients and their families, who want nothing more than their lives back. The same type that insist they can cure cancer with potions, and prayer. Load of shit.
When I was 15, I had major surgery on my knee/kneecap to stabilise a VERY mobile kneecap. My shin was cut, lengthways, and moved to a better position, then bolted in place with a 50mm surgical screw. I mention this, because despite the mind numbing pain, I had a brief partial remission period. No one has ever been able to explain it really. It lasted about 3months. I had an accident, breaking my collarbone and dislocating my shoulder, along with bruising to my unoperated on knee. On top of that, I had the worst case of bronchitis and laryngitis I’ve ever had. Maybe the remission had run its course, which was why I got the bronchitis. Maybe the bronchitis made my system shit itself again. Who knows. But what I do know for sure is, that’s the last nearly normal period of you life.
School became impossible. A massive blow. I missed the social and intellectual factors. I missed out on the stupid crushes on completely unattainable boys. On learning how to speak to boys. Don’t get me wrong, my genes dictate that I’m a bloody verbal creature! But I’ve never found my comfort zone in those situations. I believe that missing those usual rites of passage is the main reason for this.
A handful of old friends stuck by. And I made a few new friends along the way. Mostly though, the new ones couldn’t really grasp just how debilitating this fucking disease is, and fell away in time.
There’s been a boy or two along the way. One particularly lovely one. He, as much as anyone can, understood me and my situation. Mostly. But the tyranny of distance, and the frivolity of youth meant that it ended abruptly. Not being able to go far, or have the energy to expend on meeting new people, meeting first boys, and now men, is next to impossible. And, even if I do meet someone, it’s rare to find someone who can comprehend that this disease is here to stay, and to accept, and even embrace me and and all I entail. I still hope. But it’s like hoping to win the lottery, it’s a 1:8,000,000 chance.
Acceptance is a big thing for me. Over the years, it’s sent me to the brink, and back again, trying to learn to accept my situation for what it is. In 2007, my specialist, an endocrinologist, told me “after this amount of time, it will never go away. There will be good years and bad years, with no way to predict which will be which.” I was silent in his office. But as soon as I was out the door I spat out something like “well I didn’t need twelve fucking years of medical training to work that out”. It was the first time I’d admitted to myself, or anyone else, that I wasn’t going to ever be complete healthy. It hurt. More than I will ever be able to put into words. It felt like defeat. Like if this was all there was, what was the point. I was already being made be the government to feel like I was a waste, and a burden.
I’ve been left feeling that way repeatedly by various agencies and by people who should have my back, but are all too happy to jump on the “you could if you wanted to” bandwagon.
Imagine how it feels to have someone ask “what do you want in life?”, you answer honestly, health. With health, anything is possible. But then be attacked and bullied because it doesn’t suit their image of you. Myalgic Encephalomyelitis can not be overcome by wanting things more. I was a good student. I loved sport. I played piano and violin, although not especially well. I had my heart set on first medicine, then when that looked too out of reach as my schooling suffered, I wavered over other things that appealed. Without limitations now, I’d be an anthropologist, happily working in a museum, or the like. My ambitious nature is still there. But now, it’s mostly used to keep from drowning in what is a never ending cycle of doctors, viruses, joint problems, gastrointestinal upsets, trying to have the odd outing with my friends, and crashing after each and every one of those things.
Last year, my Mum had to undergo a knee replacement. Which left her unable to do her usual helping me with day to day tasks. Mostly it’s things like cleaning, and food prep. But in recent years, I’ve needed help with bathing and driving. But with Mum out of commission, I tried my best to manage. With no help, from anywhere, things got bad. I’ve deteriorated to a level I’ve not been at for a lot of years. I was already struggling, but that was, as they say, the last straw. It really didn’t occur to anyone that help may be needed.
Myalgic Encephalomyelitis is a disease that can strike anyone down, at any time. A virus your body doesn’t handle and recover from. Trauma. Accidents. Anything that traumatises the system. Studies have repeatedly shown serious abnormalities in the brain, most specifically the Basal Ganglia, situated just above the brain stem. Abnormalities in Cerebrospinal Fluid. Inflammatory markers. Immune dysfunction. And on and on. But without more real scientific research, ie looking at the pathogenesis of the illness, via real biomedical research, we will be left languishing for more years. People die from this disease. Often due to massive systems failures due to Myalgic Encephalomyelitis weakening every system in their bodies. Our bodies can be miraculous things. But, they can also be fragile, where after so much strain on it, they just stop. Cardiac abnormalities are somewhat common within the M.E. patient base. Co-morbid diseases aren’t uncommon. Autoimmune diseases seem to crop up often.
Research is the key. Real research. Not faux bullshit psych stuff. You wouldn’t tell a cancer patient to do graded exercise therapy, nor a lupus or multiple sclerosis patient. M.E. is no different to them. It is no more “in our heads” with a psychological basis than any of hose other diseases. And we no more want it than those with those diseases.
M.E./C.F.S. patients are banned from donation blood around the world, due to the unknown pathophysiology and transmission possibilities of the disease, and because patients are likely to be negatively impacted by the donation process. We are also often rejected as organ donors for the same reasons, and because our organs often aren’t in good enough shape to risk putting into someone who’s already at deaths door. These bans are permanent. Even for the small number of patients who recover, the ban remains. It’s almost ironic on the blood donation side. We’ve usually become so good with blood draws that we are able to tell the tech the best arm, and often even the best vein to go for. Me? I’d happily give blood, so long as I don’t have to look at it! But, I can’t.
Back to me specifically for a moment, and my one wish. Health. While I accept this is what it is, it doesn’t mean I’ve given up. Far from it. I’m fighting more than ever now. But now, my fight is for research, to find a simple test so others don’t go through the hateful, endless merry go round that millions of us have been on. I fight for research for a treatment and preferably for a cure! I fight for those providing advocacy and support services. I fight to retain small amounts of independence, and to have a few outings that allow me to have some enjoyment, even if it means crushing fatigue, mind numbing headaches, and horrendous muscle and joint pain afterwards.
I’d love to travel, to see the world, not just see photos. To meet new people. To see where my ancestors came from. To meet the distant relatives I’ve come across while slowly (painfully slowly) piecing my family tree together. I’d love to feel the cold of the northern hemisphere winter on my face! To meet my Irish Aunty! I’d love to study. To feed my always curious mind. I’d love to have children. That’s a huge one. But none of these things are likely to happen. I’m learning to accept them. It’s an ongoing thing. A work in progress. It’s personal and difficult.
Having M.E./C.F.S. has been described all sorts of ways. I usually ask whoever I’m talking to if they’ve ever had glandular fever (Mononucleosis), and if they have say it’s like that, and being hungover, and having just completed a marathon a day for weeks, with no rest. If they haven’t had GF/Mono, I ask if they remember the worst flu of their lives. And then add the hangover and marathon bits. It still doesn’t really cover it. It’s hard to get your head around feeling like that day in and day out, for years. I’ve learned to pace myself. But it still pretty much only gives me so much time. I have to rest, be careful what and how I eat, plan my bathing, my clothes with almost military precision, and even then, I’m usually pretty well spent before I get out of the house. But I fight on, because I have missed and lost so much already, I need to have a little fun occasionally. So that when I’m stuck in bed for days on end, I’ve got fun to remember. To smile about. Because all too often, there’s not a lot to smile about.
Today is May 12th, which is International M.E./C.F.S. Awareness Day. Around the world, patients and those who know and love them most are doing the best the can to raise awareness of this invisible, misunderstood, and much maligned disease. Me? I’ll be dressing as a princess as part of my fundraising efforts. And, I will be visiting the world famous Adelaide Oval in the evening to take some photos of the venue, which has, very awesomely, agreed to light up Blue for Awareness day. When I got the confirmation email, I cried. Rather a lot. And there were squeals. Arranging it with them wasn’t hard. And it’s tremendous recognition of a so very poorly treated and ignored disease.
My fundraising this year is for Change for ME Australia, who provide advocacy and support for those with M.E./C.F.S., Fibromyalgia (an often co-morbid illness), and Lyme Disease. It’s hard raising money for a disease that is all too often put down to being lazy, or lacking motivation. There’s a link to my Just Giving page at the bottom.
I do my best to be a good advocate for M.E., although it’s often not easy when faced with negativity, bullying and ignorance. I hope this helps even one person understand just a little more what it’s like.
Everyday Hero https://give.everydayhero.com/au/jac159