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!


The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?


…and he didn’t run away

October 8, 2014

Usually when I feel especially bad I avoid people, even people who want to help me. Part of it is that I don’t have the energy to deal with being around people. Even talking is too exhausting. Part of it is that I don’t want them to see me in that state. Sometimes it’s unavoidable, and that’s why several people have seen me when I feel especially bad. But I can count that number of people on my fingers. The other night, though, was probably the first time I voluntarily let someone see me that way.

I mentioned last month that I’m seeing someone. And it’s been going well. It’s been a long time since I’ve gotten this far into a relationship. We’d known each other before so he knew I had some health issues, but it was a vague knowledge, acquired from being in the room while I spoke to others about it. But on our first date, I brought it up and answered some questions. Since then, I’ve answered more. I canceled our second date because I felt too exhausted. Our second second date was just hanging out at my place and watching a movie because I didn’t feel up to going out. He was very understanding. We haven’t been seeing each other for very long, and until this week, that was the worst I’d felt.

The other day a lot of stress and activity caught up with me and I had a BAD day. You probably know the kind. It started terrible and then got worse. I was barely getting by. We had a date planned for that night. We were just going to hang out at my place, but I wasn’t doing well. I spent the morning reading, but that became too difficult. I spent the afternoon sitting on the couch watching tv, but that became too much. I spent the evening lying on the couch, alternating between watching tv when I could and just thinking when the tv was too much. I had emailed him to let him know that I might not be up for getting together. He told me that I could let him know at the last minute. He was completely understanding. And for once, I didn’t feel any pressure at all. I knew that if I canceled, he’d understand. This was so unlike most social situations and was a huge relief!

So there I was, lying on the couch, needing to go to the bathroom for about 2 hours but not having the energy to stand up. And I knew exactly what I wanted. So at the last minute we spoke on the phone and I told him the truth: I wanted to see him, but I wasn’t sure he should see me this way. He asked, “Is this the last time you’re going to feel like this?” and I fought my natural instinct to be vague and simply said, “No.” He responded, “If this is going to work, I have to be able to see you like this.” I was floored. He was right, of course, but still…. I pointed out that since this would happen again, he could see me like this another time, maybe in a month or two when we knew each other better, but he insisted there was no time like the present to see me going through this. And he came over.

It was a bad night. I rallied for a bit around the time he arrived, but that didn’t last long. For a little while I was able to sit up while we talked. We cuddled. He held my hand, which was all I really wanted. He asked about how I was feeling and what caused it and things like that. I explained the best I could. It was hard to collect my thoughts, and he kept having to wait while I tried to form sentences. The brain fog was thick that night. We talked about other things, too. It was a good distraction. Most of the time I had to lie down. I wasn’t just fatigued, but weak. So weak. Most of the time my eyes were closed. Keeping my eyes open was too hard. Processing visual stimuli was too exhausting. So I lay there with my eyes closed and we talked. He offered to help me with household stuff, but I told him that all I wanted was for him to be there with me and hold my hand. And it was true.

It was hard for him. I could see it in his eyes, in his face, felt it in the tenseness of his muscles. I kept checking in with him, asking him how he was doing. He just kept saying he didn’t like to see me in pain. I couldn’t tell if there was more to it than that or not. But it was hard for him, I knew that much. It was especially hard when, in the middle of a sentence, I stopped talking, had trouble breathing, and grabbed my abdomen. The pain was intense. In an instant it had jumped from a 3 to a 7 on my pain scale. It came on suddenly, or so it seemed. My guess is that there were warning symptoms that I’d ignored because of the fatigue. I wasn’t able to look at him during that, so I couldn’t see his face, but I’m guessing it was surprising for him. I’d mentioned pain, of course, but he hadn’t seen it have any effect on me. Not until that moment.

He stayed with me until that pain passed and I said I wanted to go to sleep. Then he left.

He didn’t handle it all perfectly, but I doubt anyone would their first time out. He told some stories that were probably meant as a way to make light of pain and discomfort, but just sounded like he was trivializing it. He didn’t hold my hand enough. I would have loved for him to stay until I was in bed. He wasn’t perfect, but he was pretty damn close. And he seemed to handle it all ok. Still, I was nervous.

I woke up feeling significantly better. My thyroid was still swollen, my adrenals were still struggling. I was fatigued, but not weak. I ate something for the first time in 22 hours. I emailed him to let him know I was doing better, and he wrote right back. He’s a good man, a strong man, and I was almost certain he’d stick around, but of course there was that little niggling doubt. There were the voices of all of those who’d had negative experiences of this type. So I held my breath and waited, and then there it was: he casually brought up our plans for Friday night. As if it was no big deal. As if it was assumed we’d keep those plans. And I guess it was. But what a relief.

So we’ll be going out on Friday. I’m doing better each day, and I think that by Friday I’ll be able to keep our plans to go out. But I know that if I need to stay in, he’ll be ok with that too. Actually, I think he prefers to stay in. I’m the one who’d rather go out! I’m looking forward to showing him that I’m back to the way I was when he saw me last week, before that terrible night. And I want to talk to him about everything, to answer his questions, to take his temperature on this. We all have baggage. I know that. He certainly has his, too. It’s just that mine is very visible and very hard to ignore, and he had to face it early on.

Still, it’s hard not to notice that we have a date for Friday night. So far, he hasn’t run away.