What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!

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Winning the battle against my fears

December 22, 2018

I used to travel a lot. I flew to Florida twice a year to visit my grandparents, I drove to New York twice a year to visit my other grandparents. I drove to Maine many times a year to spend a weekend or a week in my family’s vacation home there. Sometimes I flew to another state to visit friends. On top of all of that, I would take one week long bigger trip to someplace I hadn’t been before. Yes, I knew how to squeeze every last hour out of my vacation days! (There were many exhausting long weekends!)

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My last trip overseas: London

That was my life before. Before my chronic illnesses became quite so disabling. I can no longer drive the 4 hours to New York. I have not been on a plane in 8 years. Eight years! I used to fly 3-4 times every year and now…. I feel stuck at home.

Travel opens up our eyes to new experiences and unfamiliar cultures. Without that, my world has been feeling very small. I first went overseas in college and I immediately got the travel bug. I have been to a handful of countries, with tons more that I want to see. There are also so many places I want to see right here in the U.S. But that requires flying.

I was never scared to fly before, but now I am. I’m not scared of terrorists or of crashing. I’m scared of triggering a flare-up of my health issues. I’m scared of feeling sick while trapped in the air. And it’s holding me back.

The first years of my self-imposed ban flying were absolutely legitimate. Flying would have been horrible for me. Even car trips to New York when someone else drove were hard. I barely saw my grandfather in New York in the final years of his life, and that was brutal. We spoke on the phone often, but still.

But I realized recently that it’s no longer my health that’s stopping me as much as my anxiety. Sure, there are health issues too, but I think that I probably could have managed some travel in the last year or so. It’s time.

So over the summer I promised myself that this fall I would go someplace I haven’t been. But I’m not ready to fly. If I can’t fly and I can’t drive far, that means taking a train. Trains are pretty good for me, and I will write a separate post about my experience with Amtrak’s accommodations for folks with disabilities. Still, they’re limiting. I chose Philadelphia. I’ve heard good things, I’ve never seen the city, and it’s a reasonable train ride.

Not long after this decision I began seeing a therapist, and she encouraged me to try flying as well. I want to start with a very short flight, so Washington D.C. seems reasonable. I flew there once many years ago (the times I drove) and it’s super fast. I figured I would go to Philly first, then DC later. If those went well, I could build up, and maybe finally manage to visit friends on the west coast, see the Grand Canyon, and more! Maybe I could even visit my friend in England! But first things first: a train ride to Philly.

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Last week I saw the Liberty Bell!

This was HARD! Buying the train tickets took a lot of emotional strength. It was difficult to find an AirBnb in the neighborhood I wanted that was on the first floor. I thought through every aspect of the trip many times: what medications to bring, how to handle food, how to manage my limited energy. I was ready. I had planned. But I knew that things could fall apart at any time without warning. Should I really do this? Maybe it was all a big mistake!

Less than a week before the trip I had a bad night. My adrenals crashed, which happens sometimes, and it’s the worst of my symptoms. I was nauseated, fatigued, weak. I was shaking, crying, and scared. And I panicked.

I started to think, not for the first time but definitely more strongly, that I should cancel the trip. That was the last day that I could still get a reimbursement on almost everything. I could have a quiet week at home. Things had been so hectic. I was planning for an event that week. Yes, I had planned a full 2 days between the event and the trip so that I could rest and pack. That was plenty of time. The event wouldn’t be that tiring, it just took planning. Still, it was overwhelming. I couldn’t manage. I could cancel the trip and stay home and get shit done around the apartment. That sounded really nice!

Thankfully, I had a therapy appointment the next day and she talked me down. I cried the entire time. I was crying before we even started talking. I was a mess of fear and anxiety. I had put a ton of pressure on myself, because if this trip was a failure, I knew I’d be too scared to try travelling again. But I WANTED to travel. And if I didn’t try, I’d never know.

After an hour of talking, I felt better. Not great, but better. I would do this. But I was still nervous.

The next day, I felt confident again. I could do this! What changed? One thing: I felt better physically. My anxiety gets much worse when I feel sick. That makes sense, since my anxiety is about being ill.

For the next few days I slowly got shit done. I wrapped up things at home. I told myself I didn’t need to do it all. I went to the event. I had many days of low energy and I let myself stay home and rest. I cut more things off my to do list. I kept it to the bare minimum. Now, a full week after I got home from the trip, I still haven’t done some of those things, and that’s ok! 

The day came. I had packed the day before. I didn’t need to leave until noon, something I planned very intentionally. And I did it. I got on that train.

I will probably tell you about the trip another time, but the short version is that it was great! I didn’t do nearly as much as I would have liked, even given my health limitations. One day I was fatigued and couldn’t go out much. One day I was in so much pain I could barely walk. Still, I did it. And somehow, miraculously, I didn’t have any adrenal crashes! Almost as amazing (and probably related,) I spent the last 2 days with friends who ended up getting very sick, and I never caught their bug. Incredible!

I came home feeling like it was a success because I traveled someplace new and my health managed ok. That makes me feel much better about getting on a plane to DC. Not great – I’m still nervous, and when the time comes I might panic again – but at least now it feels doable. And while my grandparents are sadly no longer alive, I have several cousins and close friends in New York, and in a few months I will take a train down there to visit them.

Yesterday I went to therapy and she eagerly asked how my trip was. I was happy to tell her about my success. But honestly, even just going was a huge win for me, no matter how it turned out. I was scared and anxious but I went anyway. I’m proud of that.


Wishing someone would tell me what to do

August 20, 2018

When I was a kid and I didn’t feel well, my mother would bring me a cool cloth for my forehead, some children’s Tylenol, juice, and toast. She took care of me. She told me to rest, to watch tv, to read a book. She told me if it was severe enough to go to the doctor. I didn’t have to think.

It’s not like that as an adult. Now I have to take care of myself. I have to remember to take the medicine, to rest or not, to buy juice at the store. Of course I miss having my mom take care of me when I’m sick, but mostly I manage those things ok. What I miss the most, though, is someone else telling me what to do. Making the big decisions.

Sure, I still struggle sometimes with when to take the Tylenol when I have a fever, but that’s not such a big deal. The harder piece is choosing which treatment approach to take with my chronic illnesses.

I have a long list of illnesses of course. And just when I think I know where to focus my attention, one of the supposedly not-so-important illnesses taps me on the shoulder, winks, and then pushes me down a flight of metaphorical stairs.

Like my PCOS. Everything seemed to be just fine, and then I got a period so heavy that my doctor told me to go to the emergency room due to the blood loss. Then I became depressed for several weeks as my hormones did wacky things. Not fun. I was already considering trying a new way to manage my PCOS, but that episode made it clear just how necessary a new plan was.

Now I have seen 4 medical practitioners who I trust a lot, and I have 4 potential treatment approaches. And I don’t like any of them. I desperately want someone else to tell me what to do.

You see, most people just take birth control pills and they’re fine. The problem for me is that birth control pills make me incredibly sick. Since those aren’t an option, I need to find something else. (Sometimes Metformin is prescribed. I tried this once and immediately had an allergic reaction, so that’s not an option, either.)

It’s easy to knock out 1 approach right now: the one I’ve already been doing. It worked great for many years but has recently become ineffective, so that has to go. But what about the other 3? They each seem reasonable, but which to try? Each of them has the potential to make me feel incredibly ill, so I’m not anxious to try any of them, but not doing anything isn’t an option. Each doctor makes an excellent case for each approach.

I will try one, and if I don’t immediately have horrible side effects, it will take months to know if it works. So it could take a year or more to find a treatment that works. If any of them do.

I want someone to tell me: do this. Simple. Easy. But that isn’t an option, either. So I will continue to debating, to research, to question. And in the end, maybe I will make the right choice and maybe I won’t.

These decisions are complicated and difficult. Sometimes the choice is obvious (though still not easy) but often it’s not. And no one is going to make it for me.

In case you’re curious, here are my current options (from an endocrinologist, a naturopath, a women’s health nurse practitioner, and a gynecologist – clearly I’m not limiting my sources!):

  1. A progesterone compound. I feel sick when I take it and it no longer works effectively to give me a predictable cycle.
  2. A supplement called Calcium D-Glutarate. It should help balance out estrogen. This appeals as an easy thing to take that can be easily stopped, but I’m concerned about what it does. It lowers estrogen, and the other practitioners say I need to increase progesterone and estrogen and/or lower testosterone, so I’m not sure this is the right approach for me.
  3. Progesterone cream. It’s harder to dose and I have to be careful to not damage my skin. It would hopefully fix my cycle but not the other symptoms so I would have to take spironolactone. This makes me nervous because it’s a blood pressure medication and my blood pressure is already too low.
  4. An IUD. This makes me nervous because if I have a reaction, I can’t quickly remove it myself. Again, I would need to take spironolactone in addition.

If any of you folks with PCOS have tried any of these things, I’d love to hear about your experiences! Maybe you can help me make an informed decision. Because I’m not having much luck so far.


Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

CR - time and overwhelm

I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.


The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.


Fed up with fear

October 24, 2017

I remember the “old” me like it’s someone else. Someone else who took risks. Someone else who moved all the way across the country to try something new. Someone else who traveled overseas alone. Someone else who went scuba diving with sting rays despite her fear of open water (and yes, I was terrified of the open water! I was happy with the sting rays. Go figure.) Someone else who simply did things.

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My hand, petting a sting ray’s nose. It was softer than I expected.

But no, it was me. Me before I felt this sick and tired and in pain all the time. Except not really. My nausea was much worse back then. The pain was just as bad (or worse), simply in fewer parts of my body. But the fatigue wasn’t the same. The food limitations weren’t so strict. The knowledge of how sick I was hadn’t reached me yet. I figured I was ok, just with pain and nausea, and so I did things.

And now I don’t.

I haven’t been on an airplane in almost 7 years. I miss travel, but I don’t do it. What’s the worst that could happen? I hate to think about it. But would it really be all that bad?

Why don’t I try new things that are fun and exciting? Sure, I do new things, but they’re boring things. I’m writing a book. I tried a new group through Meetup. I have started dog sitting. I might enjoy the things, but they don’t open me to exciting new experiences. They don’t expand my view of the world. They aren’t like scuba diving with sting rays.

For a long time I have been frustrated by feeling like I couldn’t do things. Now I question if maybe I could do those things, but my fear is what’s holding me back. I get different opinions from my doctors. No one tells me sure, it’s no problem if I want to fly to England to visit a friend there. But they also don’t tell me it’s a horrible idea and I shouldn’t consider it. I get a lot of, “you could probably do it if….”

And then I wonder if my fear is rational. I’m worried about having a lousy trip because I feel horrible the entire time. It seems like a waste to spend a lot of time, effort, and money on a trip that I won’t even enjoy. But I could risk that. It’s not what’s ultimately holding me back. No, what’s holding me back is a fear of setting back my health.

If you have been following this blog, you know that 6 years ago, I was struggling, but getting by. I worked a full time job and sometimes went out after work. I liked a fairly “normal” life. Then things got so bad that I was on bed rest 3-5 days a week. Now I am doing much better than I was a few years ago, but no where near well enough to work a full time job. I can’t even manage a part time job. Still, things have been slowly improving. Doing something big and exciting could set me back. And a backslide could take years to recover from. I’m scared to risk that!

And let’s be clear, I’m not only talking about travel. I would love to go ziplining locally, but what if I injure myself, or my adrenals can’t handle the excitement? I want to go to a party and stay out late and have fun, but whenever I try I feel horrible for days afterwards, sometimes weeks, so now I’m scared to do it anymore. I want to try a new type of food that’s free of gluten, corn, and the other foods I can’t eat, but what if it makes me sick? I could go on and on.

Some of these are reasonable and I should avoid them. But others….. am I letting fear hold me back too much?

Fear has it’s place. It protects us from doing things that will hurt us. But right now, I wonder if it’s stopping me from experiencing great things that I will love. Things that will make me happy. Because what’s the point of life if I’m not experiencing it? Then again, what’s the point of life if I’m always making myself miserable?

I don’t have an answer to these questions, but at least I have gotten to the point of questioning my own fears and whether or not they are valid. I’m frustrated that I don’t have answers, but I am glad to be asking the questions.

Maybe one day I will be able to answer: are these fears reasonable?

If you have dealt with similar fears, how have you handled them? Do you take the risks, or avoid them?


How a weekend away is a 2 week ordeal

October 2, 2017

I’m going away this weekend and I’m super excited!

I used to travel all the time. 2 months at home felt like FOREVER. I could pack an overnight back without even thinking about it. I got on a plane multiple times each year and did some weeks and weekends within driving distance. A weekend away in the Berkshires, less than a 3 hour drive away, would be no big deal.

But that was then.

And this is now.

Now I have to plan. I am being super careful about washing my hands and avoiding germs. I can’t get sick now!

I need to bring food with me. I will be with friends and some food will be safe for me to eat, but I need to bring other food. So I went to the grocery store today (Monday) and carefully planned out what I will make and which days I will make it. I also promised to bake cookies to bring, and I can’t do big cooking on the same day I bake, because I won’t have enough energy for that, but I can’t make anything too far in advance because I want it all to be fresh.

The day before the trip I will do some packing, but most of my stuff (my ASV (which is like a CPAP), my medications, toiletries, and more) can’t be packed until the day of. I need to ration my energy that day. Thankfully, I only have to drive half an hour to a friends’ house that day and then she will do the rest of the driving from there. Still, even being a passenger will be tiring and painful.

I am already thinking about how to handle my food and medications on the day of the trip. I always feel like shit the first night I travel. So I am being careful to bring everything I need to take it all at the right times: I will take something to help with the pain and the nausea when we start to drive, something else for the pain when we arrive, then something else for the nausea a few hours after that. Between medical cannabis and pepto bismol, the right foods and lots of rest, I am hoping really hard that it won’t be too miserable. Thankfully, I will be with friends who will understand if I can’t hang out with them that night.

I have scheduled my medical appointments around this trip. I was able to get a physical therapy appointment just a couple days after I return, so hopefully that will help with the pain from the long car ride and sleeping in a less-than-great bed.

My calendar is empty for the first 2 days after my return. That will give me time to rest and recover. I will get a lot of sleep, watch tv and movies, crochet, and read. If I feel up to it I will do more, and if not, that’s ok too. During my recovery time, I still need to eat, and I might not be up to preparing food, so I am making sure to cook and freeze food now that I can eat when I return.

I want to travel more. I really, desperately do. But then I remember what a trip like this is like. I can manage it ok, because it is only two days. I will leave at noon on Friday and be home by 5pm on Sunday at the latest. And I won’t be flying. I know it would be much harder if I was flying, for many reasons. It would be more painful. I might feel anxious at being “trapped” on a plan. Not to mention, I wouldn’t be able to bring any cannabis with me, and I can’t imagine how I would manage my symptoms without it.

At the same time, a friend and I are trying to schedule another weekend that I can visit her. The drive is less than 2 hours, but I would be driving myself. She would provide food I could eat during the entire visit, but aside from that, everything else would be the same. Resting for days in advance, blocking out days afterwards for rest, figuring out medications and other things to help alleviate my symptoms while knowing that I will almost definitely feel like shit the night that I arrive.

Sometimes it doesn’t seem worth it. But I know it will be in the end. Even thought it won’t be easy. It won’t be like it was before. But hopefully it will still be fun.


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