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.

5 Comments | Expectations, Fatigue, Healthcare, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

What dog sitting has taught me about my health

November 8, 2014
2014-11-07 08.15.06

It’s time to get out of bed and play!

It’s been an interesting week for me, to say the least. For the first time in years, I’ve recently begun to have less stress and more time, but that also coincided with extra pain and other symptoms and with some family issues. But this week, I was doing ok. I was feeling pretty good health-wise. My “to do” list feels overwhelming, but only because of the quantity. There’s nothing really horrible on it, like dealing with insurance companies. So it wasn’t such a bad week for watching this cutie.

I was nervous about this. I’d promised a while ago that I’d watch this adorable little guy, but as the time approached, I wondered if I could really do a good job. I’ve always wanted a dog of my own, but it was never feasible. First I was working and traveling too much, and I had landlords who wouldn’t allow dogs, and then my health problems prevented it. Recently, though, I’ve started to think that I might be able to handle dog ownership if I could find a landlord that would allow dogs. And this week was my test.

Now, if I got a dog I’d have a yard (it’s the only way I’d do it) so that would make things easier. Still, it would be a lot of work. This guy is 11, so he doesn’t need as much activity. Plus, he’s the easiest dog I’ve never known. He rarely barks, he lets you know clearly when he needs to go out, he doesn’t pull on the leash, etc. He’s great! And he was exhausting. So how much more tiring would a younger dog be?

2014-11-03 17.57.09

Look how cute I am! Don’t you want to share your dinner?

Last night I never finished washing the dishes. I was too tired. But the pooch still had to go out. There was no choice. So out we went. Down the stairs and outside, and he peed, and then back up again. Now it’s 9:30 am and I’m exhausted, but he hasn’t had any exercise today, so we’ll be taking a walk. And I still need to finish those dishes. It’s just what happens when there’s a dog in the house. I’m completely worn out and, after a full week, I’m glad I’ll be returning him to his owners today.

But then there’s the flip side. I’ve gotten more exercise than I have in ages, and I actually feel good about it! Now, the truth is that this is coinciding with some health improvements that I’ll write about another day. Still, even with those improvements I wouldn’t have done so much walking if it wasn’t for this guy. Not a chance. I might have taken a walk every other day. Instead, I’ve been taking 2 walks every day! Look, I even wore him out!

There have been studies about how petting an animal lowers blood pressure. For someone with hypotension that’s really not a concern, but it’s so relaxing to have him curl up on my lap. It’s just the best! I haven’t done much knitting this week

Thanks for the walk! Now goodnight!

Thanks for the walk! Now goodnight!

because my hands have been otherwise occupied with petting this adorable dog. Look at him! Who wouldn’t want to pet him? He helps my stress more than I would have thought.

And then there’s having someone else to focus on. No matter how tired I am or how much pain I’m in, I have to think about taking care of him. It’s good to shift my focus. I think we’ve all experienced this is in different ways. I know that I have. I teach a friend how to knit, or I give advice to someone, or I do some volunteer work, and it’s a great distraction from my own issues. But having someone here who needs my attention every day, like it or not, brings that attention shift to a new level.

It’s been a fantastic week. I’ve absolutely loved it. And while it’s shown me that I’m not ready to have a dog quite yet, I can tell that I’m getting close. And that when I do, it’ll be more beneficial to my health than I ever would have thought. Now if you’ll excuse me, someone wants to play fetch. Hint: it isn’t me.

Do you have a pet? How do you handle its care on your worst days? How does it help you?

9 Comments | Expectations, Fatigue, Milestones, Raves, Symptoms | Tagged: , , , | Permalink
Posted by chronicrants

Re-learning what it means to have free time

October 25, 2014

The thing about not working due to illness is that “free time” is hard to measure. Back when I worked, “free time” meant non-work hours that weren’t dedicated to chores, like cooking or cleaning. It was simple then: either I was working (paid or otherwise) or I wasn’t.

But now I’m always working, in a way. Taking care of my health is more than a full time job. And on top of that, many hours that are “free” are spent feeling too lousy to do anything. I might spend an entire day at home, but I’m in too much pain to sort through these papers or answer those emails or call a friend. I left my job 3 years ago and I’m finally used to not going to a job, but for the first time, I seem to have so-called “free time” and it’s a bit of a shock.

After I left my job I was busy dealing with huge amounts of health research. I read, read more, and reread it all. I joined Facebook groups and Twitter chats. I took books out the library. I found new doctors. On top of that, I was dealing with long term disability, social security, and losing, regaining, relosing, changing, and once more losing my health insurance. There were doctors, lawyers, and more doctors. I changed my diet and tried new medications. It was exhausting. And of course, through it all, I felt like crap.

Finally, the long term disability insurance battle was over, I received social security disability, I got Medicare and Medicaid for health insurance, and I applied for a disabled subway pass, food stamps, section 8 housing, and fuel assistance. Last month, I had finally finished with the paperwork! At the same time, I was temporarily done with my medical research. There was one more avenue to pursue, but first I needed to deal with a few old issues. I had the right practitioners and I was pursing treatments, but only time would tell. Just as I reached this new plateau, I started dating someone and we spent a lot of time together. Then, my grandfather died.

And so now, at the end of October 2014, 3 years after I left my job, for the first time I’m finding myself with free time. The family issues have passed and things are settling at a new normal. The relationship is over, unfortunately. The health research is still on hold. The paperwork is still complete. At the same time, surprisingly (or maybe not?), I’m feeling a bit better these days. And suddenly, I’m able to do more!

The stress has been lifted. The anxiety is gone. I’m making plans for 5 or even 6 days each week! Some days the plans are small: a friend coming over to chat, a doctor appointment. Other days they’re big: going to a party, doing volunteer work for an entire afternoon. Still other days, I stay home and rest. I don’t do too many big things in a week, but the point is, I’m doing them!

Of course, that’s also why my “free” time doesn’t feel so free. I look around my apartment and see a lot of clutter. I have big projects that I’m not working on. I have errands that aren’t being run. I’m so glad to have the time and ability to go out, that I go out whenever I can. And that means that when I’m at home, I’m lucky if I have the energy to write a blog post. (On a side note, I hope to get back into a good writing groove now!) The projects aren’t happening.

It will take some time to find my balance. Things like my social security application were so important, putting them off wasn’t an option. Now I need to find a way to prioritize the things that aren’t so clearly ranked. I know I’ll figure it out. It will just take some time. And in the meantime, I’m so grateful to be having this problem at last!

4 Comments | Educating, Expectations, Frustration, Limitations, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: | Permalink
Posted by chronicrants

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?

3 Comments | Expectations, Frustration, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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