I couldn’t remember how I “got better”

February 23, 2017

It’s not like I’m “healthy” by any means. But compared to 5 years ago, I’m a different person.

If you were reading this blog 5 years ago, you know that I was struggling to get through each day. If I went grocery shopping, I’d be so exhausted that I wouldn’t leave the house again for the rest of the day, or the next day either. I’d rest up for 2 days so I could spend an afternoon with my family, then I’d need 2 more days to recover. I didn’t leave the house much, and when I did it was really tough. I researched my health issues and began to find answers. I would read 3 pages in a book, fall asleep, wake up having forgotten what I’d read before, and have to start over. The brain fog made it hard to understand any of the medical concepts and I often had to read the same paragraph 5 times. It took ages to get through one book, but I did it. And I learned from it. And then I started the next book.

So how did I get from there to here? Here, where I can go to the grocery store, read a chapter in a book, and cook a meal all in one day, while still feeling ok. It’s like a miracle!

Someone asked me today about medications I’d taken. We’d just met, but I’m obviously open about my health conditions and she’s in the medical field, so she was curious. But the thing is, I couldn’t remember.

Later, it started coming back to me. The diets. The supplements. She asked about prescriptions, but those weren’t what did it. Except the thyroid medication. I’d forgotten about that. Oh yes, that helped a lot. Getting rid of the daily nausea did wonders. And the supplements, slowly over time, began to work. Of course, I forgot about the sleep apnea diagnosis. First the CPAP machine, then the ASV machine (similar to a CPAP, but with different air flow) did wonders for me.

I guess the brain fog still rears its ugly head, because I honestly could not remember any of that in the moment that she asked. I think every day about how much better I’m doing. I am so happy, grateful, appreciative. There are a million “What ifs” for how I might not have improved. But I did improve. Thank goodness.

So the next time I can’t remember how I did it, I will remember to read this blog. These 5.5 years of writing are like my medical diary. It covers all of the big moments, good and small. Not to mention the hell of dealing with benefits (my food stamps got cut off again last week! For crying out loud! I got them back, but come on….)

The thing is, I couldn’t remember today how I managed to improve. But I didn’t forget that I had. I didn’t forget February 2012 when I first cut out gluten. I didn’t forget falling asleep while I struggled to read a book about hypothyroidism. And I didn’t forget how grateful I am for the improvement.

I remembered the important parts. I blocked out the struggle.


Please stop adding to my stress

January 7, 2017

Over the years I’ve learned to control my stress levels. In addition to the obvious emotional benefits, it does wonders for my physical health. Stress exacerbates everything, so I’m happy to avoid it. Lately, though, it just keeps piling on.

I moved to a new apartment 2 weeks ago. I absolutely love it here! The move was less stressful than I would have thought, and I unpacked very quickly. Unfortunately, while the boxes are gone, the place is a mess. There are papers in various places and clutter on the counter. To a stranger it doesn’t look like I just moved in (except for the empty walls) – it simply looks like I’m unorganized. And the clutter is getting to me. The mess makes my mind feel messy.

On top of the clutter, there are so many little things to do! I need to fill out forms for fuel assistance in my new town, get on local mailing lists and off of my old mailing lists, and a dozen other things. And of course, I need to decorate, which feels unnatural to me. It takes hours to research things I want and then, just when I make my decisions, I find out the thing is out of stock.

Those wouldn’t bother me at all, though, if it wasn’t for the rest. My laptop has been on the fritz for over a month! Even the repair guy has given up. It’s time for a new one, even though that machine was only two years old. So I need to research a new computer. I’m not sure what to get and I’m wracked with insecurity – what if I get another crappy machine, despite researching them thoroughly? And of course, that’s money I hadn’t planned to spend, too.

My Tivo is pretty new. I planned out that purchase last summer and it was a smart move. I have a cheap antenna that I bought online and now I can record all of my favorite shows on the channels I get over the airwaves – no monthly fees! But a few days ago the Tivo began to buzz. It’s a strange, annoying sound. The quiet of my new home is ruined by this constant buzzing. When nothing is set to record I unplug it, but that’s annoying and not something I want to do permanently. I need to figure out how to fix it, or else see if it can be replaced under the warranty.

It’s the end of the year, which means the federal government wants to know about my income for the last year, not just for taxes, but for my benefits. Oy! That would be easy if my laptop was working, but without it.

And because I moved, other benefits offices want information about my finances, too. How can I tell them about my utility bills when I haven’t received any yet? I just moved in!

I do little things to earn some money, but they all require the computer. Damn that laptop for breaking just as I was getting ready to move!

I was going to try online dating, actually, but I need a working laptop for that.

Because of the move I didn’t schedule any doctor appointments for the entire month of December. It was lovely. But now I’m making up for it. I had 2 yesterday (Friday.) I have another Monday. There are several more over the next few weeks, too. I need to start a medication on Monday that will make me feel like crap for about 2 weeks, but I already put it off longer than I should.

As I was telling someone today what I planned to buy for new furniture (cheap, but nice looking!) she tried to talk me out of it for no good reason. I almost lost my temper. I’m stressed out by trying to juggle way too many balls in the air. It’s just too much! I don’t need someone disagreeing with me over something so basic. Why mess up my plans? I know she didn’t mean any harm, but I just don’t have it in me to deal with anything new. I can’t handle more.

These thing are all so little, but they’re just too much. Just like 1 ball of yarn is light, but 50 weighs too much for me to carry. It too damn much.

And yet I’m super lucky. My awesome parents are buying a lot of my new apartment decorations. Several relatives gave me Amazon gift cards as housewarming gifts so I can buy more. I have enough savings to buy a laptop. I can afford all of this. I have the time available to work through it all. Ok, I don’t really have the energy for it, but I’m getting there. I’m so lucky.

But I’m still stressed.

And it’s affecting my health.

How do you handle it when you have too many balls in the air? How do you relax when 50 different things are calling for your attention? Please comment below and let’s share some ideas!


Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


Trying to do it “all” with chronic illnesses

December 14, 2016

It feels like everything is hard with a chronic illness. Pain, fatigue, and other symptoms affect us in ways most people don’t think about.

Walking is harder. Sitting is harder. Reading is harder. Cooking is harder. Planning is a hell of a lot harder.

Last year I wrote down goals for earning money in 2016. I didn’t succeed, but they put me on a better path than I would have otherwise been on. So I did it again for 2017. And then I did something else: I wrote down my personal goals. I’ve never done that before and it was fascinating.

I wrote down everything big. And I realized how much harder it will all be than I would have thought just a few years ago.

I wrote down the book I want to write, blogging here, improving my health including doing regular physical therapy and other exercise, getting a dog (yay!), joining a dating site (well, maybe), making new single friends (most of my friends are coupled off at this point) through attending meetup groups, and some other things I’ll be telling you about soon.

It was a really great exercise and I recommend everyone do it. It puts everything into perspective. Doing this forced me to seriously consider everything I want to do, then narrow that down to what I want most. Then I broke that down into what I need to do to make it happen. For example, in order to make new friends, I need to join some meetup groups and actually attend, instead of my usual thing of joining but then staying home. (If you don’t know about meetup.com and you want to get out of the house more, check it out! I can’t do the physical activity groups like hiking or playing frisbee anymore, so I’m joining knitting and board game groups.) And I wrote down how many times a day I’ll do physical therapy, how many times a week I’ll check in on dating sites, and so on.

And then I looked at my list, added up the time required for each thing, and thought, “No wonder I’m so overwhelmed and never feel like I have enough time to get things done!” It was great! I mean, it sucked, because I have to give up something that’s important to me. But at least now I understand that it wasn’t that I was unorganized, just that I was trying to do more than my health allows. I have fewer hours, and I need to accept that. Sure, I’ve got a lot less on my list than I would if I was healthy, but it’s still too much. I can’t go right from a date to taking a walk – I need to rest in between. I can’t make new friends unless I have the energy to go out with them, and that takes energy from other activities. I still want to hang out with my current friends, knit, read, and do other things. Plus, showering, getting dressed, laundry, washing dishes, and even eating take up a lot of energy. But I don’t have to tell you that.

And of course, I can’t assume that any of my plans will stick. I could plan to do 3 hours of stuff every Monday, and some Mondays I’ll be able to do more but others I’ll have to less or maybe nothing at all. It’s completely unpredictable.

So that’s how I find myself looking at my list of personal goals for 2017, feeling keenly aware of the ways that everything is just a bit harder with chronic illnesses.

I don’t have the answers yet, but at least I can see the problem clearly. Something’s gotta give. Ok. I accept that. Now I just need to find the answers.

What about you? Do you set personal goals? How do you find ways to fit everything in or pare down?


Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.


Feeling better but not better enough

November 4, 2016

My doctor ran through my symptoms. How’s x? How’s y? And what’s new with z? Standard stuff. And to each one I said I was doing much better these days. Stable. Feeling ok.

So then why do I still feel so limited?

My pain is lessened to the point that I can completely ignore it – as long as I stay within my limitations, of course. No riding a bike or lifting heavy babies.

The nausea is gone. This is the best thing in the world!

My period sucked big time, but that’s over and I won’t have to deal with it again for 2 more months.

Even my fatigue isn’t as bad.

So why can’t I work a full time job? Why can’t I take a really long walk? Why can’t I travel? Why can’t I clean my apartment?

And the answer is, it’s not enough.

I’m feeling so much better than I was a few years ago, but I still have a long way to go. My friends take a walk and I can’t keep up. I have a fun afternoon and need to lie down to rest partway through. I cook dinner, and I’m in pain from standing and fatigued from the activity.

I’m excited for the progress. Really. And also frustrated at my continued limitations.

Will I ever see further improvement? Am I kidding myself if I keep trying?

I don’t know. But it sure beats the alternative: giving up.

There’s no better option. I have to keep trying. And even though it’s not enough, better is still better. And I’ll take it.

 


Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!


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