Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

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My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.

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I’ve had a really hard week, both physically and emotionally.  While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.

I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine.  The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.

Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers.  I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.

And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days.  I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.

I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow.  I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.

My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.

Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.

I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making.  But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.

Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.

Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.

When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.

And it is much easier to lay that blame on yourself . . . when others are laying it on you too.  When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.

I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.

And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.

I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy.  But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?

The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.

Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.

Support doesn’t have an agenda.  Neither does friendship or love.

 

Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.

Friday: The light on the answering machine flashes. One week and one day since blood work. It’s kind of surreal knowing that the substance flowing through my body keeping me alive could also be cluing us in to something.

270877_10151770095785375_384334416_n.jpg[Blood work on May 31 after my physical; I have teeny veins apparently which required the use of the butterfly needle]

The hesitant call back to the doctor’s office to find the line busy. The second call after the agonized waiting. Getting put on hold.  The continued waiting. The click back on the line.

“She [the doctor] wants to talk to you about your blood work.” Kathy the phone lady [who may actually be Cathy, who knows] tells me.

I’ve learned from some of the best. I am not waiting a minute longer. “Is it the thyroid or the iron?” Cutting to the chase.

Both.”

I close my eyes as I sigh and mumble something to Kathy that I can’t remember.

The iron I was sure was eventually coming. Five years into becoming a vegetarian who doesn’t pay a huge amount of attention to nutrition like I know I should, it’s whatever. I’ll go in and get the lecture next week. I’ll work on it in the meantime.

The thyroid flag is probably hypothyroidism, of which I have some symptoms after consulting Dr. Google on hypothyroidism. Lazy butterfly-looking gland, what did I ever do to you?

So what happens? I get the results. I make the follow-up appointment for next Monday as it is not urgent. And then the classic tiredness that is hallmark of both anemia and hypothyroidism hits. I sleep eleven hours on Saturday night, nearly four and a half of them with my iPod on playing Brian Strean. I realize all the “random bruises” probably weren’t so random. I realize there is probably more than meets the eye. Isn’t everything?

It’s not a big deal. It’s just a pill a day. I think we caught it early, but I have no idea. Of course, at times over the last three days I’ve just wondered “what’s next?”. And for the millionth time “why?”. It’s that “one more thing”.

Even though I know I can do this, it’s that all-shaking addition . . . “for the rest of your life”. It’s that part that sucks the most.

edit: it’s been a few years since i wrote this, but all other thyroid checks have come back as normal–I’m not sure why the blip in my lab work, but as of my last T3/T4/etc. check in February-ish 2014, things looked fine.

June 6th is the “Day of Visibility” for people living with invisible diseases.

Most of the time, I look like a completely healthy twenty-one year old.

And I work hard to stay that way :].

I ride my bike [complete with the classic awkward nose zit. Twenty-one, that still happens].

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Get entirely too excited about doing the track at school with my friend Sam . . .

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Travel . . . and jump a lot and wear ridiculous outfits.

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Rock out on the beach . . .

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Go for “photo shoot walks” with friends.

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And generally do awesome shit.

But there’s the other part. The part where I manage an invisible chronic disease every day. The part where the only visible signs of this disease might be the medical ID bracelet that would have been on my left wrist in each of the above pictures or the blue inhaler in my pocket.

The part where I take multiple medications a day to stay healthy. The part where I inhale and snort steroids [corticosteroids] to decrease the inflammation in my lungs and sinuses. The part where I take three maintenance inhalers a day to try to keep things this way.

The part where I am working to stay healthy by taking my medicine and staying active and keeping myself in a sense of balance.

The part where I look healthy, but I’m exhausted but I am sick and fighting it out.

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The part where I do the best I can, increase my meds as I’m supposed to, and still that’s not good enough.

The part where I’m ready to just say “fuck asthma”.

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And the part where I cycle back to the first section.

The part where I live my life in a sense of coexistence with this disease that you can’t see on the outside.

The part where I do awesome shit.

The part where I know I can do this, even when it’s hard.

The part where I live my life.

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I’m having issues staying focused on the #hawmc prompts and staying connected to and enjoying what I’m writing. So, I am taking what Ashley said to heart. Because it’s not about the prompts–it’s about the story that they create and blogging every day. I’ve already missed one day, but hopefully I will stay on track for the rest of the month!

And with that, I still have to post my 12 of 12 and get to bed at a reasonable time. So, I am doing my first-ever re-post of an entry from September 14th, 2010.

I walk across the loop between the athletic centre and the main campus building. The cold fall breeze blows my hair in front of my face.  As I push it away, I look at the people around me, people I don’t know.  I then look at the people i know: my friends, my family, my classmates, my instructors, my coworkers, the kids at work.  How many of them, like me, have an invisible illness?  How many of them have an understanding of the rigorous schedules, symptoms and unrelenting attention required to manage their disease?  How many of them fight their body day in and day out and still, like me, look totally healthy on the outside despite what may be going on inside or behind-the-scenes to keep them healthy?

And I will never know.  Some of the above people share their stories with me.  Some of them choose to keep their stories silent and invisible.  And some I will never even speak to or see again.

Yet all of us, possessing an anomaly settled inside, move forward–awaiting the day where our elusive cures will come.