Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.
"I will never [chronicillnesscat] 'get well soon'"
And, you know, that's okay. Really. It isn't great and it certainly isn't what I wished for, but I'm dealing. And part of what helps me deal is people around me understanding that and saying something like "I hope you get through this flare quickly and easily" instead of "get well soon."
From It’s Not Negativity – It’s Called “Being Sick”!
The helpful advice of others, or what they presume to be helpful advice…don’t we just love it? It’s always interesting to have people who have absolutely no clue as to what we go through everyday try and tell us WHY we we are sick, WHAT caused us to be sick, and the REASON we are sick is because we have NEGATIVE thoughts.
But you can’t expect someone to be running through the fields like Julie Andrews singing and twirling when in the misery we are in. Sorry – but it’s just not going to happen. ... Chronic illness is just that. It is CHRONIC. It is not going away and negative thoughts, positive thoughts, whatever we do is not going to make it go away. Period.
Read more from Sandy Robinson at fightingfatigue.org.
From Paying People to Stay Home:
We don’t appear sick enough and I hear many complain about paying people to stay home. That $1037.00 I receive in disability benefits has been a dream of mine since I was 15, when I got my first paycheck from Taco Bell and saw my deduction for Medicare and disability benefits. Yes, this girl from Westminster, California is finally living the dream.
I hear constant criticism from even close family members that we shouldn’t, “Pay people to stay home.” Good news everyone, you don’t. Those who have been working have been paying into a system for years, so that burden is not yours. And for those who have never worked and are using SS or disability benefits, I say, kudos. They are taking care of themselves so they may take care of their own families. People who take care of themselves can take care of their children or elderly parents and are doing society as a whole a great service.
Read more from Karen Vasquez at butyoudontlooksick.com.
If your health didn't stand in the way, if money were no object and you didn't need to go back school to get more education or training, what job would you have? (Question of the week from Selena at Oh My Aches and Pains!)
I'm an activist. I was well on my way to making what was amateur into professional. I was getting the degree. I was working part-time in the field. I was making connections. It was all there, just at the tip of my fingertips. Now, no matter how I stretch, I can't reach it. If I can't get out of bed on some days, if I can't stay awake or upright for more than a few hours, then I can't work this or any other job. But I want to, oh, how I want to.
To be honest with you, though, right now I'd work retail again if it meant I was well enough to work and bring home a paycheck. That's right, I'd strap on the comfy shoes and smile at the worst customer ever if only I could. And I'd do it happily.
Sometimes I don't think people understand that. It must be so nice, they say sarcastically, to stay home all day long. I'm sure it would be, were I both well and wealthy. But it isn't particularly nice to have to stay home because of illness and disability. It's painful, angering, and kind of boring. And it's even less nice to watch your money trickle away on medical expenses and know you can't bring any more in.
I was going to have my dream job. Now I'm not. And it sucks.
But such beliefs have implications for how we regard people who are ill. If people are insufficiently upbeat after a cancer diagnosis or inadequately “spiritual” after a diagnosis of AIDS, are we to assume they have willfully placed their health at risk? And if they fail to recover, is it really their fault? The incessant pressure to be positive imposes an enormous burden on patients whose course of treatment doesn’t go as planned.
It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.
Read the rest at A Fighting Spirit Won't Save Your Life, The NYT
Sandy at FightingFatigue.org posts about the invisibility of ME/CFS & Fibro.
How many other illnesses do people have to explain why they:
It is only with invisible illnesses like CFS, Fibromyalgia and related diseases that we have to go through all of this crap with society, doctors, employers, friends, families, and everyone over and over again. ... We don’t have anything to be ashamed about and there is no shame in telling someone you have ME/CFS or Fibromyalgia. They are REAL illnesses that affect millions of REAL people everyday. I know that people are sometimes afraid to mention what is wrong with them and I used to be like that because I would worry about what people would think. But I don’t feel like that anymore. Knowledge is power and the only way people are going to learn about us is from our stories.
...That ever-annoying question that us chronic pain sufferers hate to hear: “What is your pain level today on a scale of 1 – 10?” I know that it is the therapists’ and doctors’ jobs to ask us that question, but they don’t realize how difficult that can be to answer. For me, and for many of my chronic pain peers, trying to rate the level of our pain is like a ME/CFS patient trying to rate the level of their fatigue. When you are exhausted all of the time, day in and day out, it always seems like the fatigue is bad. When the pain is there all of the time, day in and day out, it’s hard to rate it and it’s hard to pinpoint exactly where it is coming from all of the time, too. [Source]
Wow, do I ever relate to that. The way I measure both pain and fatigue has changed since becoming ill. When I'm asked if something hurts I find myself thinking "it hurts less than my PHN so it's okay," okay, of course, being a relative term. As for my fatigue, I'm always tired, always exhausted, a good day is a day when I get out of bed despite the exhaustion.
It's particularly troublesome for me when it comes to measuring pain. Doctors need to know when you're in pain and how much pain you're having. This came into play during my lumbar puncture when I was told there would be a moment of pain, a "zing" going down my spine and down one leg, and that would be the moment the needle was in the right place so I should tell them. But I didn't recognize that moment. Sure there was pain. But there was less pain than I'm used to having from my PHN so at first I wasn't sure. Was it a twinge? Was it pressure? Was it that zing we were waiting for? It was and we finally figured that out. But I probably could have spared myself the second moment of pain had I been able to recognize it the first time.
At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS. (American Red Cross Statement 12/03/2010) (emphasis mine)
This is a good thing, but it comes with a tremendous amount of frustration. If CFIDS/ME is all in our heads or we're just tired then why can't we donate blood? And if we might have a retrovirus that can be passed along in our blood then why is our illness dismissed?
Anna at FWD (feminists with disabilities) For a Way Forward posts: What is Ableism? Five Things About Ableism You Should Know
Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.
Read more at FWD.
Diane at FWD (feminists with disabilities) for a way forward posts about How universities are failing disabled students (like me).
You’re intelligent, personable, and get good grades. It might look like higher education is a given. ... But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
I'm currently attending college while dealing with chronic illness and disability. My college is supportive of me and people like me, but even as supportive as they are it isn't quite enough and that support doesn't extend to everyone. (Though, to tell you how marvelous my Dean is, she swears she'll help me graduate even if she and the other non-traditional-aged scholars have to carry me across the stage at our graduation ceremony.)
Almost every syllabus I've read includes a passage instructing disabled students to contact Disability Services for accomodations. Accomodations. Like special chairs or ways to deal with learning disabilities. Concrete tools to fit concrete needs.But in my experience there isn't much at all, if anything, in place for students with chronic illnesses.
When I began school this past semester with a new diagnosis under my belt I did what I always do and emailed my professors, copying my Dean and the Disability Advisor. I provided a letter from my physician confirming my diagnoses. I told them I had Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) along with the Post-Herpetic Neuralgia (PHN) I've had for years. Nerve damage people can understand and can make accomodations for. We've done it before. I get extensions if I can't type, I once received permission to hand write a paper. PHN was an easy problem with a simple enough fix.
But what about CFIDS? This is the first semester I had a diagnosis for it and it seems no one knows how to deal with it. I spent easily two months "brainstorming" with all involved parties and still I feel like no one is truly satisfied. If I'm being honest, I think part of the problem is that CFIDS has a horrible name and a bad reputation. Teachers think I'm "tired" and are willing to understand if I miss a class here and there, but don't seem to understand that CFIDS is a multi-systemic disorder that can be (and is) tremendously disabling. I'm not just tired; some days I can't get out of bed at all, some weeks even, and the "immune dysfunction" part of the disorder means just what you think it means. I am immuno-compromised. I catch everything, and even when I don't my body attacks itself.
A key feature of CFIDS is post-exertional malaise. Basically, any exertion tires and weakens me out of proportion to someone without CFIDS. Not only that, it causes distinct physical and mental problems, such as respiratory difficulties, reduced heart rate, decreased cerebral blood flow, decreased cerebral oxygen, and impaired cognitive function. The recovery period can last anywhere from a day to weeks. Any exertion. Any. As in walking across campus from my car to my class. As in sitting in class and thinking. Any exertion.
Another key feature is brain fog. It includes being forgetful, feeling confused, difficulty concentrating and an inability to speak clearly.For me, I forget words and names, I switch words, and have intense difficulty reading and processing. It can be triggered by overexertion, fatigue, overstimulation, multi-tasking, stress, poor sleep, and some medications. Try turning your homework in on time when you can't even remember your professor's name, never mind concentrate on the material.
My college tries, but they have nothing in their toolbox to help with all of this. Part of it is lack of understanding of CFIDS (and I'd venture other auto-immune disorders) but what's the other part? I get the impression (at some times from some people, not a blanket impression) that I'm too sick to be there and so should just go home. But I'm not going to get better so going home is giving up, not giving myself time to heal.
We've come up with ways to make this semester doable if not particularly bearable, but the stress I have to deal with while constantly battling for my rights and explaining my disability over and over is, quite frankly, making me ill. I recently had a lumbar puncture and like any responsible student I contacted my professors prior to the procedure and told them I would be behind in schoolwork until I recovered. It took me a while to recover. I didn't get the spinal headache but I had pain from and incision site, weakness, and it took me easily a week and a half to begin to recover from the post-exertional malaise caused by the procedure. In the meantime I received an email from one of those professors I notified expressing "concern" that I was behind in my work. This floored me, honestly. I've been open, I've gone through the proper channels, I've been extremely clear about my needs and my schedule, and still I got that email. Someone who was familiar with my issues--as this professor was--should not have been concerned in any way.
So what's the problem? Well, as I said, this is the first semester I've had an official diagnosis for the horribly named CFIDS. We all know the stigma that disorder has, and while I don't know for sure that's an issue here, I do know that this professor acts as if I do not have a legitimate illness. Another problem, I think, is that I'm a non-traditional-aged student. As a schoolmate said to me, our school is not particularly well equipped to handle adult problems and issues. They assume every student is traditional-aged with traditional-aged student issues. (Which, by the way, is hugely insulting to the women attending my college. They are mature and hard-working, not teenaged slackers.)
I'm ill. I won't get better. I need accomodations, like time and flexibility, and since those aren't as easy to provide as something concrete like chairs and desks sometimes I'm treated like I'm just out of luck. I stand up and fight for what I need, but what about the people who don't or can't fight? What do they do?
