Watching the Boston Marathon with a chronic illness

April 21, 2014

It’s hard to explain to people who’ve never lived here, but the Boston Marathon is a BIG DEAL. Sure, everyone knows about last year’s bombing, so they know we want to support our runners more than ever this year, but it was a really BIG DEAL before that, too.

When I was a kid, many years we’d stand along the route and cheer on the runners. I knew they were doing something BIG, but I didn’t understand how BIG it was until I got a bit older. As an adult, I cheered on the strangers and often people I knew, too. I haven’t gone every year, especially since I didn’t always live in Boston, but I’ve gone most years that I’ve been in town.

Last year I skipped the marathon because I just didn’t have the energy. I was sad to miss it, but I didn’t feel like I had a choice. It was just too much. And so I was at my parents’ house when I got a phone call from a relative who wanted to talk about the bombing that we hadn’t even heard about yet. We spent hours glued to the tv, calling and texting everyone we knew who might be at the finish line.

But this year is different. I’m by no means “healthy,” or even back to where I was just a few years ago. Still, I think I could manage to watch for just a little bit. The thing is, I can’t be sure, and so I didn’t make plans with friends to go watch it, and going alone is boring, but I might do it anyway. There are new security restrictions because of last year, so I’m thinking about how I could avoid bringing a backpack. My meds fit in my purse, I can carry water bottles in a plastic bag, maybe I can bring lunch in disposable containers…. I’m planning and plotting, trying to figure out how it could work. I need to protect myself from the sun, stay warm, drink lots of water, and eat a healthy lunch. And I need to make sure I don’t expend too much energy in getting to and from the spot I’ll watch from (whereever that may be.)

So this year, like so many others in the past, I’m hoping to watch at least a bit of the Boston Marathon. I just hope I can do it without wearing myself down too much.

1 Comment | Decisions, Fatigue, Frustration, Limitations, Symptoms, Unpredictable | Permalink
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A day off means something else when you have a chronic illness

April 2, 2014

For most of my life, “a day off” meant a weekday that I didn’t go to work or school, wasn’t in bed sick, and could do whatever I wanted.

About a dozen years ago I took “a day off” for the first time that didn’t involve any travel. I didn’t go to work, I got extra sleep, I took the car in for some work that needed to be done, I cleaned the apartment, and I indulged in some hobbies. By the end of the day, I felt fantastic – rested, relaxed, and productive. I remember it so well.

These days “a day off” is a completely different animal. For one thing, I’m not in school or working at a job, so that’s not relevant. Instead, I spend a lot of my time dealing with health issues. I can never get away from my health problems; those are and will always be with me. I can almost get away from some of the logistical issues, though. And I can ignore the “to do” list that needs doing.

I woke up feeling horrible. I’m more exhausted than I have been in a while. So many muscles ache that don’t usually ache. I woke up not wanting to do anything. Luckily for me, I didn’t have anything scheduled today, medical, social or otherwise. So I decided to take “a day off.” There’s so much I should be doing, but I’m not. I should be making phone calls to find a therapist. I should be dealing with a form from my lawyer. I should be doing laundry. I should be changing the sheets on my bed. I should be taking a walk on this rare sunny afternoon. I should have put food in the crockpot this morning. I should be getting a long-overdue haircut. Doing even two of these things would make me feel very productive, but instead I’m not doing any of them. No, instead I’m taking “a day off.”

Here’s what I have been and will be doing:

  • Took a shower at 4pm. I put it off as long as I could, but in the end I felt sort of gross and decided it was worth it.
  • Emailed with some friends (but ignored all of my other emails.)
  • Fill my pill boxes for the week. I do this every Wednesday. I don’t want to do it, and I’ve been putting it off, but it really has to be done today.
  • Watched tv. Will watch more tv.
  • Read my book. Will read more.
  • Knitted. Will knit more.
  • Writing this blog post.
  • Ate leftovers. Will eat more leftovers
  • Will wash dishes. Because there’s no one else to do it.

I haven’t decided yet about my physical therapy exercises. I should do them, but I’m just so tired, and they take so much effort, and it’s my day off, so I don’t want to even think about it. But I know I need to.

So at the end of today, I won’t feel rested, relaxed, and productive like I did that day 12 years ago. But maybe I won’t feel any worse than I did when I woke up this morning. If that happens, I’ll consider it a successful day.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Is remission possible?

March 28, 2014

I saw my naturopath yesterday and she surprised me with one of her goals. She said that she wants to get me to believe that once I’m better, I’ll stay better, and that I won’t relapse. That had never occurred to me. [As a side note, I’m very impressed that she picked up on this mindset of mine and chose to address it head-on.]

Several friends and family members keep insisting I’ll get better. I keep trying to explain to them that I’ll never be 100% healthy. I’ll always have some symptoms, and I’ll always have these medical conditions. These are lifelong diseases that won’t ever go away, and I’ve accepted that. The best I can hope for is to go into remission, which I’ve never really thought of as a possibility for me, though I know it’s a possibility in general. As for symptoms, my gastrointestinal problems are almost entirely better and my fatigue has been improving, but I think I’ll always be at risk of those returning, and I’ll certainly continue to have pain. Maybe the pain can be reduced, but no one has suggested they’ll be able to get rid of it completely.

I’ve accepted all of that. I’m ok with that. If we could just get rid of my fatigue, I’d be ecstatic! But what my naturopath said really stopped me in my tracks. This whole process has been so traumatic. The symptoms, their impact on my life, the insurance issues, the uncertainty over my future, have all changed me. There are some good changes, like a new appreciation for the little things in life, and a desire to keep my life simple, without the “busyness” that so many people take pride in. I’m glad to have come to these realizations.

But there have also been some bad changes, like more fear. I’m scared to spend money, because what if I can never earn money again? And even if I’m able to work, what if I get sick again and need it for that? I’m scared I’ll never find a life partner who can handle all of my health issues. I’m scared I’ll be a burden on my parents. I’m scared to make plans for anything big (tickets to a show, a small trip out of town, attending a wedding) because what if I have to cancel at the last minute? And if I do get better, what if I get sick again? Will I have the strength to go through this all again. And what if I never improve in the first place?

I think that all of these fears are natural. I also think I have to get rid of them. My naturopath is right: if I’m going to have a goal of feeling X% better, then when I reach that goal, I have to trust that I’ll stay there. I’ll need that mental attitude to propel me forward. Sure, I might have setbacks. In fact, she agreed that I probably will have them. Then medications will be adjusted and I’ll improve. But she thinks there won’t be many and that they’ll be short, just a few days or a few weeks; not months or years.

I want to believe that. I do. Really. But I can’t. Not yet. After the trauma I’ve experienced recently, I’m just not ready. But I’m working on it. I love the idea. I hope she’s right. So when I eventually get a therapist (I started looking for one recently) I think this topic will be at the top of our agenda.

Leave a Comment » | Decisions, Expectations, Fatigue, Frustration, Healthcare, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Wondering why I feel good

March 22, 2014

Today is my third good day in a row! The first was actually really great. Sure, I’m still in pain, and I don’t have as much energy as most “healthy” people my age, but I’m still loving how much better I feel! The question is, what’s causing it? I want to know the cause so maybe I can make it last! Here are my current thoughts:

  1. It’s my new medication. I started the new med exactly 3 weeks before my first good day. The problem is, usually good effects are felt within the first few days on this med. The changes are right – it’s my energy that’s improved, and that’s what I’d expect from this med – but the timing is off.
  2. It’s the medication I stopped taking. At my doctor’s suggestion, I stopped taking a medication two and a half weeks ago. Since the new med hadn’t had an effect yet, I wasn’t to worried about doing both so close together. I wouldn’t expect it to have this effect, but maybe it’s an indirect cause.
  3. It’s the supplement I stopped taking. I stopped it about a week ago when I realized my most recent gastrointestinal problems started just after I added in this supplement. Two days later, my gastro problems were mostly gone, and the third day everything was as it should be. That alone wouldn’t make me feel this good (my gastro problems were fixed for months before I started that supplement, and I didn’t feel this good then) but maybe in combination with something else it’s helping.
  4. It’s daylight savings time. I have seasonal affective disorder, so I always get extra happy and more energetic when we have the extra hour of daylight. The thing is, DST started two weeks ago, and I usually feel the effect within the first couple of days.
  5. It’s a fluke. This is an odd coincidence. Usually when I have a random good day it’s just that: one good day. Not three. But maybe this is just a longer fluke.
  6. Maybe it’s something else I haven’t even thought of yet.
  7. Maybe it’s a combination of all of the above.

Some of you might wonder why I’m not considering my new CPAP machine, and that’s because I only started it last night, two days after I started feeling so much better.

Right now, #1 seems the most likely, but the timing of it just doesn’t fit. But maybe there was so much damage done to my cells, that it was just delayed in taking effect. And my doctor did say it could take up to a month. I didn’t believe him based on all of the research I’d done and what other patients said, but maybe he was right. It’s odd that I’d have felt absolutely nothing for the first 3 weeks, though, instead of a more gradual improvement. But nothing else fits as well. It’s probably that with the other things added in. I just really, really, really hope it’s not a fluke! I’m loving this feeling so much, and I don’t want it to go away! I haven’t felt this good in many months, maybe even a year or more. It’s not like I feel “healthy,” but I sure do feel a hell of a lot closer than I did four days ago. I feel like I can do more so I’m trying to do more without overdoing it. I also feel that I’m thinking more clearly, so I’m reading more and getting more out of it. I feel happier, but I guess anyone would if they saw a spark of hope after feeling so sick for so long. Still, I’m just nonstop happy.

I guess there’s only one thing I can do for now: enjoy it while I can! I’m taking walks each day. I spent more time out with friends today than I normally would. I’m still not going to the party tonight that I had already been planning to skip. Right now I feel up to it, but I don’t want to overdo it. I’m reading more. I’m trying to catch up on insurance paperwork. And mostly I’m just appreciating this feeling of being more alert. It’s not perfect, but boy, I’ll take it!

11 Comments | Expectations, Fatigue, Healthcare, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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