Choosing to stay home vs. being stuck at home

December 23, 2014

If you’re a spoonie, you probably know what it’s like to be stuck at home. And maybe you sometimes get to choose to stay home. They’re very different.

For most of the last few years, when I was home it was because I was stuck at home. If I felt up to going out, I did because I knew I had to take advantage of the limited opportunity. But lately I’ve been feeling a bit better and I’ve been choosing to stay home. I’d sort of forgotten what it was like. I’d had a lot of time at home before, but this is different, and I’m still learning the ways that it’s different.

When I’m stuck, I want to go out, or to at least have the option to go out. When I can choose, I often don’t want to go out and have to talk myself into taking a walk or running errands, just to get fresh air and exercise.

When I’m stuck, I’m often lonely. When I can choose, I appreciate the quiet solitude of being home alone.

When I’m stuck, I’m sad to miss out on social events. When I can choose, I feel less bad if I miss those events.

When I’m stuck, my apartment feels small and cramped. When I can choose, my home feels warm and cozy.

When I’m stuck, I’m bored and can’t do much beyond watch tv and read a bit. When I can choose, I often feel well enough to work on hobbies, cook, clean up the clutter, and also read and watch tv (not all on the same day, though.)

When I’m stuck, I feel sad. When I can choose, I feel content.

When I’m stuck, I’m very aware of the pain and fatigue. When I can choose, the pain and fatigue are obviously less, and feeling better allows me to mostly ignore the pain and fatigue that remain.

When I’m stuck, I spend a lot of time on social media, trying to connect with the outside world. When I can choose, I spend more time doing things on my own.

When I’m stuck, I think about the things I can’t do. When I can choose, I focus on the things that I can do.

When I’m stuck, I make plans for a future that seems remote and unlikely. When I can choose, I make plans (the same plans, by the way,) for a future that feels foreign but possible.

When I’m stuck, I go out every chance I get. When I can choose, sometimes I go out and sometimes I stay in.

When I’m stuck, having company is thrilling. When I can choose, sometimes company is nice and sometimes I’d rather stay home alone.

When I’m stuck, I am very aware of being stuck. When I can choose, I’m very aware that I have a choice. And I’m so incredibly grateful to have that choice.


A life of constant experiments

December 11, 2014

When your health changes constantly and you’re trying to improve it, sometimes there’s no way to know what will help versus what will make it worse other than to try. It can be difficult, frustrating, and exhausting to have to constantly try things out, knowing they could make you feel horrible, but what choice is there? Sometimes, all you can do is experiment.

A few years ago I hated the constant experimenting. I was nervous about each one, and so many either had no effect or made things worse. It was overwhelming to be constantly thinking about which experiment I was in and which I should do next and how to control the variables.

I’ve been noticing a big difference lately, as the number of experiments has gone down. There are still a whole lot to keep track of, but over all, it’s less stressful. I try to only do one at a time, so the shorter list means I no longer have a year-long list of them waiting. Still, I get nervous.

Last month, my experiment was to start walking almost daily. More recently it has been getting my new CPAP setup to work for me. That involved further experiments with different sleep schedules. Then last week, I took a short trip. I have 2 new supplements to try and 1 prescription to start. Walking seems to be working, as long as I don’t overdo it. The CPAP setup experiment is a partial success. There’s more to be done. The new sleep schedule is a success, though. The trip was mixed, but overall it showed me that I need to improve more before I travel again. I’ll start one of those new supplements this afternoon, then the other in about a week. The prescription will have to wait until I know where those supplements stand. Maybe they’ll make me really sick, maybe they’ll help me feel better. Maybe both. Maybe neither. And that’s the “experiment” part, because I just can’t be sure.

Having relatively few experiments to do right now is a relief, but it still isn’t easy. I have to constantly think about what I’m doing and about how I feel. Friends think I just take a pill and then wait and see. But it’s not so easy when I know that pill might make me feel really sick. Should I take it today, even though I’m going out this afternoon? And if it doesn’t agree with me, will it ruin my plans for the weekend? Or I could wait. I could put it off, like I’ve been doing for the past 2 weeks. But that doesn’t help anything, it only delays the inevitable.

And of course there’s the juggling act, as I try to figure out which experiments to run in which order. Friends think my doctor decides this but they don’t. I do. My current list of experiments spans 3 doctors, and that doesn’t include the travel. There’s no one person to turn to. Besides, no one knows my body better than I do.

I feel like my own guinea pig. I don’t like it, but it works. Trying new things is the only way to feel better, either for a minute or in the long term. So that’s why I push myself. And that’s why I’ll risk ruining both my afternoon plans and my weekend plans by trying a new multivitamin today. Because despite the problems, it’s worth it if it works. I only hope it works.


Watching my life change

November 13, 2014

A funny thing happened when I was busy just trying to survive: my health took a big step forward. And suddenly, instead of being in one of the negative health cycles we all know so well, I’ve practically fallen into a positive health cycle.

First I left the hell of benefits applications. I got the last approval letter this week. I’m done (for now, at least.) That reduced my stress level more than I could have imagined.

Then I started with a new CPAP setup for my sleep apnea. With a couple weeks I was noticing a difference. I still have some problems with it and, with a couple of exceptions, I haven’t been able to use it for more than a few hours each night, but it’s helping. (As a side note, I saw my sleep doctor today and I’m hopefully we’ll be able to fix those problems soon.)

Then, as I was feeling less stress and more energy, I spent a week dog sitting. I took 2 walks each day and was more active in between walks. And while it was tiring, I actually felt pretty good!

Yesterday I saw my naturopath and today I saw my sleep doctor. Unlike many of the other doctors I see, each of them ask a lot of questions about how I’m feeling take the time to consider all of the details. And that means that I have to take the time to consider how I’m feeling and to answer their questions thoroughly and thoughtfully.

I knew before this week that I was doing significantly better, but when I compared how I feel now to how I felt at my previous appointments with each doctor I saw the change more clearly than ever.

And the thing is, it’s not just that I feel better. It’s that because I feel better, I’m doing more! So you know that health cycle I mentioned at the start of this blog post? Well, it goes something like this:

Feel better physically –> Be more active –> Feel happier from extra activity –> Feel even better physically from extra happiness and from extra activity & exercise –>

Isn’t that a wonderful cycle? I won’t know how long it will last, but I hope it lasts a long time!

Suddenly I’m going out with friends more, doing more volunteering for a couple of groups I’m involved in, helping others more, exercising more (I’m trying to take a medium walk every day) and generally feeling happier! It’s not perfect. My doctor today asked if I’ve thought about going back to work. I know I’m not ready. I’m not keeping up with a lot of things around the house. I haven’t been writing here as much as I’d like. There are so many things not getting done. If I can’t find balance between extra socializing (which is still less than what most people my age do,) extra exercise, household chores, and a couple of hobbies, how can I possibly add work to that mix? I’m still hoping to get there, but I’m just not there yet. And that’s ok.

It’s ok because right now I’m seeing positive changes. I want to embrace those for all they’re worth. I’ve dealt with a lot of shit lately. Loved ones have died. I’ve had excruciating pain. A promising relationship ended suddenly. There’s been some tough stuff. But now, finally, things are looking up. And I’m going to focus on that and enjoy it as much as I possibly can.


Why I don’t have a wheelchair, and it’s not what you think

October 23, 2014

The other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise wouldn’t have been able to, and they also let me get out of the hotel room and have a little bit of fun. But last weekend wasn’t the first time I used a wheelchair, and I doubt it will be the last. So why don’t I have one of my own?

For a long time I didn’t need a wheelchair. It was rare that I had trouble walking, and when I did, I could usually manage to “power through.” As the pain and disability got worse, I occasionally had a friend push me in a chair at the mall, or use a chair in an airport. It wasn’t often, but I did it. But I told myself those were aberrations. I was feeling stubborn. I didn’t want to need a wheelchair.

More recently, as I found myself telling people more often that “I can’t leave my apartment” or “I can’t walk” I realized that the real limitation wasn’t my ability to walk, but my inability to find an alternative. Due to joint pain and instability in my wrists, I can’t use a cane, crutches, or a walker. I can’t use my hands to lean on anything. So when the pain in my feet or knees is especially bad, I’m stuck. I spend days at a time sitting on the couch or lying in bed, and hobbling to the bathroom or kitchen only when I truly have to. I can’t leave my apartment because it involves too much walking. The stubbornness has dissolved as I have been become a prisoner in my own home. But what if I could leave without walking?

Most of my friends think I don’t have a wheelchair because I don’t need one. Some others think it’s because I refuse to use one. They’re both wrong. The reason is sadly simple: money. I can’t afford it.

Let’s say I get a low-end electric wheelchair for $1500. That’s a lot of money, especially for something I wouldn’t use every 20120809_220808day, but I think it would be worth it and I could manage to pay for it. Unfortunately, that’s not the only cost. There are many accessories I’m sure I’ll need, even though I don’t know yet what they are (if you do know, please list them in the comments! I’m trying to get an accurate idea, in case I end up doing this at some point.) And I’m guessing there would be repairs and maintenance or the chair.

Now how will get that chair around? I need a van. Let’s forget for a moment about the extra cost for gas on a minivan (I drive a compact car now.) And let’s ignore the extra money for repairs, since I’d have to get a much older car, with many more miles, than what I have now. Let’s just look at the cost of the van itself. After trading in my current car, I’d probably spend about $20,000 for a used wheelchair van.

So that’s $21,500. That’s a lot of money! And as if that weren’t enough, I need to be able to get to the van. Right now, on the bad days, I can’t walk down the long hall from my apartment to the front of my building, or down the walkway from the front door to the sidewalk. And then my car could be parked a couple blocks away. I should really live in an accessible apartment. Those are incredibly hard to find in the Boston area. These are old buildings. The last time I lived in a place that was built post-1930 was 4 apartments and a dozen years ago when I lived on the west coast. In fact, I’ve only ever lived in 2 accessible apartments. 1 was that apartment on the west coast and the other was a place that I lived in for 1 semester in college. That’s it. Everyplace else has had stairs. Newer buildings are accessible. Newer building are also expensive. Not only would I be paying moving costs, but my rent would go through the roof. This is just not an option. More likely, I would need to move to another inaccessible apartment that involved less walking to get to my car. It would need to have parking, though, so my car would be closer. Chances are, I’d be paying my same rent or more. Probably more.

Still, let’s say I could move with just slightly higher rent, plus moving costs, plus the van, and the wheelchair itself. We’re talking approximately $24,000 for a wheelchair that would be incredibly helpful about 10 times per year. (Each time varies between a few hours or a couple weeks.) This just doesn’t make sense.

So for those who’ve wondered why I don’t have a wheelchair, even though there are obviously days that it would be incredibly helpful, that’s why. It’s about the money. Plain and simple. It sucks, but it’s the reality.

Have you had to give up using a wheelchair or other mobility aide because of cost? What’s your experience with wheelchair use? Are my numbers off in any way? Please comment and share your story!