Easy things that aren’t so easy

April 24, 2015

When you have chronic pain, chronic fatigue, and other chronic symptoms, there are some everyday movements and actions that most people assume are easy, but which really aren’t. They’re painful, draining, and sometimes impossible.

I was reminded of this yesterday when my mom called. I told her I was in recovery mode from the activities of the day before. She knew I was resting, but she didn’t seem to understand that just talking on the phone was exhausting. I was supposed to be resting, so I shouldn’t have been talking on the phone, but she thought of it as a low-energy activity. In fairness to my mom, I should have been more clear about my limitations; that’s my responsibility and no one else’s. But it did make me think about how differently we perceive things.

So here are just a few things that others think are easy but which aren’t for me. And of course, it varies from day to day. Some days sitting up is no problem. Others it’s impossible.

  • Sitting up.
  • Cooking.
  • Walking down the street.
  • Walking around my apartment.
  • Keeping my eyes open.
  • Standing up.
  • Breathing.
  • Reading.
  • Eating.
  • Sitting down without letting my body just drop to the sofa/chair/toilet.
  • Talking.
  • Singing.
  • Concentrating on anything.
  • Drinking water.
  • Showering.
  • Watching a movie and following the plot.
  • Typing.
  • Thinking.
  • Moving my hands.
  • Keeping my hands still.

What can you add to this list? Please share your ideas in the comments. Then share this with your family and friends to help raise some awareness.

1 Comment | Educating, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
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What doctors learn from us

April 19, 2015

Most of my doctors work at one of Boston’s teaching hospitals, so I sometimes have a student or intern in the room during my appointments. This past year, there was a fellow, Dr. N, working with the doctor who I see for my sleep problems. The fellow has been really great, and I’m sad that he’s leaving in June when the fellowship ends. Before he leaves for an exciting new position, I wanted to tell him how great he’s been. But he beat me to it!

At my last appointment, I pointed out that I probably wouldn’t see him again, and he looked sad and reached out to shake my hand. Then he said, “I’ve learned a lot from you.” I was completely shocked. He was being very sincere. I could tell that he really meant it, that he had learned a lot from me. I was truly touched.

I hadn’t thought much about him learning from me. I had been thinking about all I wanted to say to him about what a great doctor he is. I still told him, and I gave him specific examples. I asked that he try not to lose his enthusiasm and caring over time.* He blushed deeply and said he wouldn’t. I hope what I said sticks with him. What he said sure sticks with me. But in that moment, as I was thinking about what I wanted to say to him, I was caught off guard and didn’t know how to respond to his statement. Now I’ve had some time to consider it.

I try hard to convince doctors to be open-minded and understanding, but I forgot what an impression I might make on doctors who are completely new to the field. With Dr. N, it wasn’t just about open-mindedness and understanding. That was part of it, but I think I showed him what a chronic illness patient really looks like. I’m guessing he hadn’t seen many yet, and probably few like me who are so proactive no-nonsense. He saw my resilience and determination. He also saw my fear and anxiety. He heard me say I was willing to try anything, but push hard to prioritize non-pharmaceutical options. He saw me work incredibly hard and try many options, even the ones I clearly disliked or feared. He received many emails from me as I tried to improve my health, emails that were always short, to the point, and respectful. He saw me struggling to stay awake in appointments while trying to joke and keep the atmosphere friendly. He heard me state my symptoms methodically, without complaining about them. He heard me emphasize the disabling aspect of my symptoms in an effort to be taken seriously, even when no one expressed doubt, and I’d like to think he understood why I felt the need to do that. In a short time, he saw and heard so much.

I don’t know what exactly Dr. N meant when he said he’d learned a lot from me. I can only guess. But I would like to think that at least one new doctor now understands more about what chronic illness patients deal with, and will show them the compassion and understanding that we all deserve.

*Note: Dr. N really was fantastic. He went out of his way to do everything he could to improve my health. On top of his magnificent efforts and attitude, he was also very knowledgeable without being arrogant. I hope he goes on to be the amazing doctor that I suspect he’ll be.

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How chronic illness didn’t cause my anxiety

April 9, 2015

Two years ago I was sitting in a support group meeting when one member said, “Everyone with a chronic illness has PTSD.” The way he said it was so matter-of-fact that I was really surprised. It was the first time I had considered the possibility. After a moment, I decided I didn’t agree. I knew I didn’t have PTSD. I still don’t. But I understand much better why he said it.

Today I was emailing with a close friend about some anxieties I have. They all have to do with my health issues. Even the anxieties that don’t seem to be about my health issues, like anything job-related, can be traced to the lack of security I now feel because of my health issues. She asked if I might have PTSD. I’d thought about that before, so I know I don’t have it. I had checked the diagnostic criteria and while I have lesser versions of many of the symptoms, I wouldn’t get that diagnosis. I’m sure of it. So what do I have?

I have years of pain, exhaustion, nausea, diarrhea, and other symptoms. I have inexplicable symptoms that pop up at very inconvenient and completely unexpected times. I have years of the fear of not knowing what caused any of it. I guess that’s all to be expected.

But I also have anxieties that were completely preventable, the ones caused by society. I have years of disrespect, disbelief, and condescension behind me, not only from friends, coworkers, and acquaintances, but also from doctors. I had doctors mistreat me both emotionally and physically. I was a terrified teen who was falsely assured it would all be ok. Even then I knew the adults didn’t really know that. I was a scared young adult whose fears weren’t acknowledged at all. I worry about my health, my present, and my future every day, sometimes a lot and sometimes just a little, and I hear nothing more than platitudes from medical professionals, if that.

I have lost people close to me. I’ve missed out on more life experiences than I care to think about. My friendships, romantic relationships, and career have all been altered. My health has affected where I live, how I spend my free time, and even my ability to get a dog. There is no part of me that has been untouched by this.

And yet I’m one of the lucky ones, because my anxieties aren’t nearly as severe as they could be.

Still, I’m aware of them. I’ve been noticing them more and more lately. I don’t think they’ve gotten worse. I think that as my physical conditions have stabilized, for the first time I have the capacity to acknowledge the emotional toll this has rung. And while there’s the occasional larger symptom, mostly I notice small things. Talking to a friend about tattoos is fine as long as we’re talking about body parts where I haven’t had much pain, but when we talked about one particular popular spot, one where I’ve had my worst and longest pain, one that has involved the most mistreatment by doctors… even just typing this out my heart is beating more and I feel tense. Talking to my friend about tattoos there gave me a feeling that was completely unfamiliar. Being touched in certain places upsets me horribly. If a doctor touches my shoulder, my thigh, my back, I’m fine. But if they touch my wrist I just about jump through the roof. The pain there isn’t so horrible anymore, but the memories are. The memories of doctors asking if pressing certain areas would hurt, and when I said yes and asked them not to, they did it anyway just to see my reaction. The memories of doctors intentionally dislocating my wrist because they saw in my chart that it was possible and they were curious. The memories of me asking them not to, of me telling them how horribly painful it was, and of them doing it anyway. Who would do that to a scared 17-year-old? But they did. More than once. The memories of a doctor telling me I should stop complaining because others had it worse, and me leaving the office in tears.

When I see a new doctor I steel myself. I walk in with my medical history, my list of medications, and my questions for them. I’m all business as I interview them. But inside I’m quaking. I ask them specific questions and it appears I’m checking their abilities, but it’s more than that. I need to find out how they’ll treat me and I listen closely for the answers. I try so hard to figure out if they will respect me. Will they listen to my opinions about my own body? Will they take me seriously? Will they read research articles that I bring them? Will they scoff at my chosen treatment methods? Sometimes I get it wrong, but I try so hard to figure it out at that first meeting. I refuse to be treated badly any more, so at the very least, I try to make that much clear. I suffered through that for more than 20 years and I won’t do it again.

Sometimes I think about it all and I wonder, how could I possibly have come out of all of that without being somewhat scarred? And yet, I did ok for so long. Somehow, I managed it all. It was just the last few years that pushed me over the edge. It was getting so much sicker. It was having the doctors say there was nothing more they could do for me. It was doing my own research and having doctors tell me I was wrong, when I knew in my gut I was right (and if you’re a regular reader, you know that I was.)

And it was years of fighting with insurance companies and the social security agency to “prove” that I was really sick, to fight for the benefits to which I was entitled. That might have been the most scarring of all. It was stupid and unnecessary and hurtful, and I will never forgive any of the people involved in the creation of that process for treating sick people like criminals.

I’m generally a happy person, but sometimes I hear things coming out of my mouth (or being typed here on this screen), and I’m shocked at how angry and bitter I am. I don’t mean to sound that way, but I just can’t help it. And really, can you blame me?

It’s important to remember that anxiety can be a condition of its own. You can have anxiety without any physical illnesses. It’s also quite possible to have both, but have them be unrelated. It just so happens that I’m focused on my own type. I know that any anxieties I have are related to my chronic illnesses. It just so happens that the illnesses themselves aren’t what traumatized me the most. It’s the way people treated me because of them.

I wish you, dear reader, the best of luck with your own situation. I sincerely hope you are treated better, while I sadly realize that many of you are not, and many are treated even worse. I hope so much that one day these preventable anxieties are actually prevented.

(And since you might be wondering, no, I’m not in therapy. I would like to be, but I can’t see a private practitioner with my health insurance and I do not want to go to the major hospitals for personal reasons. So until I get different insurance or can afford to pay myself, I won’t be going. But again, I’m one of the lucky ones, because I’m functioning ok. And I’m very thankful for that.)

1 Comment | Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Limitations, Rants | Tagged: , , | Permalink
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Why I must be my own medical detective, and you should be yours

March 17, 2015

I just solved a huge mystery. My doctors agreed that it makes total sense. But they didn’t think of it. I did.

It’s not easy to research a health condition. It can feel impossible when you don’t have a diagnosis. I went to the library when my symptoms started, but I didn’t find anything. That was in the pre-household-internet dark ages of the early 1990s. When I got online a few years later, I tried again, but I didn’t find anything. Years later the internet had more information it on so I tried again, and again, no luck. It was looking up symptoms. I didn’t have a diagnosis yet.

11 years after my symptoms started I had a diagnosis, but it wasn’t very helpful. Then I got more diagnoses. And more. And more. Still, I couldn’t piece together the puzzle. I was overwhelmed. I gave up.

One day in the library I was reading a novel and I suddenly had the urge to get rid of (or at least ease) my daily nausea. I found some books, and my journey began.

I was fortunate in many ways. The brain fog was bad, but I was still able to read. It was slow and torturous, but I did it.  I was educated enough to make sense of some difficult matter. I had just enough diagnoses to follow the right breadcrumbs. I had a fantastic library at my fingertips. I found the right books when I was in the right mindset. I was lucky. But I also worked damn hard. It took many, many months to get through those books. And it was worth every minute.

I’ve noticed lately that I have a lot more free time now that I’m not always studying those books and reading websites and following Facebook groups. It’s not that I’m cured, but I learned enough to get stable, and I was ready to take a break before tackling the next thing. I’ll do it at some point, but now I’m resting.

A couple weeks ago I was having bad brain fog. (I still am.) It came on suddenly and I didn’t know why. Maybe it was the estrogen I’d recently started again for my PCOS (polycystic ovary syndrome)? I could imagine why that would make a difference, but that was the only change in my medications. Or maybe it was the change in seasons? I always have trouble when the seasons change, especially in the spring. I checked with my naturopath. She agreed estrogen itself wouldn’t have this effect, but maybe the fillers would. Or it could be the change in seasons. But that didn’t feel right. I know how that feels, and the symptoms, their degree, and the style of onset just didn’t feel like it came from the start of spring.

There was nothing to do but wait and see. I hate that. But I had no choice, so I waited. Then the other day I looked in the mirror and noticed one eyebrow was thinning near the end. That was odd. It’s a classic hypothyroid symptom, but my thyroid has been stable! I have Hashimoto’s Disease, so antibodies are attacking my thyroid. In theory that means that I’ll need to adjust my medications over time, but my immune system has been calmer lately. And besides, wouldn’t the onset of brain fog be more gradual? It didn’t seem right.

Then a few hours later it hit me: the estrogen! I’d read in my research that estrogen affects the thyroid hormone delivery system. I’d paid attention because at the time I was taking estrogen for my PCOS. I went off of it later. If the estrogen I started a few weeks ago was binding those thyroid hormones, then it could have made my current thyroid dose partially ineffective and caused me to become hypothyroid again! This explains other symptoms, too, like my slight depression, moodiness, and increased appetite.

I emailed my naturopath. She agreed. I emailed my thyroid doc. He agreed. I’m getting blood work done tomorrow. There’s no doubt in my mind that I’m right, but the blood work will confirm it and then the doctor can write me a new, higher prescription.

No doctor was going to catch this. That was clear. I was going to continue to get worse and worse and maybe, just maybe, someone would have eventually realized it was my thyroid. But how sick would I have gotten? Instead, we caught it early – I’ve only been on the estrogen for 3 weeks. With any luck, by next week the brain fog will have lifted and I’ll feel stable again!

Being a detective isn’t easy, but it’s necessary. No one cares about my health more than me. No one will fight harder for my health than I will. And no one can understand my body better than me. Someone else would look at my history and say that this was the same thing I deal with every March. Only I could know that it wasn’t because it just didn’t feel like it.

Think about what you know about your body and your health that no one else can know. Then, when you feel up to it, consider doing a little reading. And please come back here and let me know how it goes!

Do you do your own research? Have you felt it was worthwhile? Please share your experiences, good, bad, or otherwise, in the comments!

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
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