Picturing my potential future

November 29, 2013

When you deal with major life illness, quite a number of unexpected things could happen. I’m going to focus on one in particular.

First, something expected happened when I had to leave work on disability: I gained a new perspective on life. I changed my mind about what I thought was important. A lot of people talk about that happening. Even healthy people expect that to happen to anyone dealing with a big illness. But then something unexpected happened, too: I had a lot of time to think. It makes sense to me now, but I hadn’t considered it before. Back when I was unemployed because I quit my job, I was busier than ever. I volunteered, did housework, met up with friends for lunch, exercised regularly, spent time looking for a new job, caught up on random life stuff (you know the constant “to do” list.) But this is different. I can’t go out much. I spend a lot of time at home and alone. At the beginning my brain was foggy and my memory was lousy so that I couldn’t do much reading or serious thinking. But thankfully those symptoms have improved. Now I read a lot of personal development books and blogs and I take the time to really think about them. After all, what else am I able to do?

I’ve been trying to stay positive and believe that I will get better at some point. The new treatment has helped a bit, and I’ll probably change the dose or try a different version soon. I really do think something will help. I know that I’ll never be truly “healthy.” There’s just been too much damage to my body. Still, I could be well enough to work, date, and socialize more. And when I think about that life, now I have a pretty good idea of what I do and don’t want it to include.

I don’t want to work too much or spend too much time doing boring chores and errands. Yes, the laundry has to be done and meals have to be cooked, but that needs to be balanced out with more fun things. I want to spend a lot of time in nature. I want to be around people I who make me happy and vice versa. I want to save my money so that I can quit working as soon as possible. Mostly, I want a simple life. I want to get rid of the clutter around my apartment (I’m working on that now, bit by bit.) I want to be present in the moment. I want to keep my to do list free of unnecessary things. I want to cross things off my to do list each day without stress, to just do them without procrastinating and then move on. I want to exercise regularly. I want to keep my health at the forefront by eating right, exercising often, and taking care of myself in general.

It’s so easy to imagine this life. I’m sure it will be harder to carry it out, but I sure plan to try! I imagine going to bed at a decent hour and waking up after 8 or 9 hours of sleep. I work efficiently at my own business for the first few hours of the day. (I think I will have to have my own business so I can have flexible hours and can work from home to accommodate my health issues.) I will take a nice walk, then eat lunch. Then I’ll work a bit more. I’ll stop working in the middle of the afternoon (I’m working on a plan to do the job part-time) and then use the rest of the afternoon to buy groceries, cook meals, do laundry, exercise more, etc. I will have the evenings free for dating, socializing, etc. My weekends will be free for that also. I will do as many chores and errands as I can during the week so that they don’t overrun my weekends. I will avoid shopping unless it’s completely necessary. I won’t buy anything unless I truly need it. I will get rid of anything in my home that I don’t really need. I will get rid of my car if I get healthy enough (I live on public transportation, so I only keep my car because some days I’m unable to walk to the bus or train.) I will spend most of my time enjoying nature and being with friends. I’ll save up the money I don’t spend so that I can retire young. After I retire, I’ll be able to volunteer more. I may even start a nonprofit. I’ve had an idea for a nonprofit floating around in my head for a while now, but I’m not healthy enough to manage it yet. If I feel able to, I’ll travel. There is so much in this world that I want to see and I’d be grateful to see even a small part of it.

Ok, I know this sounds a bit idealistic. And maybe it is. But I think I can do it, at least mostly. Sure, there will be stressful days. There will be days that I flip my priorities on their heads. That’s ok. It’s ok as long as most days are the way I just described. It will take effort and patience, but I’ll do it because I think it will be worth it.

So that’s the potential future that I’m picturing for myself. I don’t know if I will ever have the opportunity to try it, but I’m sure as hell going to keep working towards that goal!

Side note: If you like the idea of simplicity, try starting here: bemorewithless.com  This is my favorite simplicity blog at the moment.

9 Comments | Decisions, Expectations, Frustration, Job, Limitations, Unpredictable | Permalink
Posted by chronicrants

How the other side lives: others’ medical appointments

November 27, 2013

I’ve been going to other people’s medical appointments lately. Well, I’ve really only been going to appointments for two. The first is my father. He needs someone more experienced to ask the right questions. The second is a friend who just had a baby. I just hold the baby in the waiting room while my friend has her checkup or whatever.

It’s interesting to see how the other side lives. My father has only recently had any health problems, and my friend has had almost none. Yes, I’ve gained some insight into their lives and into what it must be like to have a straightforward appointment with no medical mysteries, something I haven’t experienced since I was a pre-teen. What I find more interesting, though, is the reminder of why “healthy” people find it so hard to understand what we go through.

It starts before the appointment. There’s no major prep. There’s no gathering of pill bottles, lists of questions, or compiling of medical records. There’s no anxiety. There’s no worry.

Then there’s the day of the appointment. It’s no big deal to them. It’s just another item on another day, like doing laundry or buying groceries (which are also no big deal to them, unlike to me.) The appointment itself is straightforward. It’s treated like meeting with a plumber to get your pipes fixed – they ask questions, get answers, and go on with their day. There’s also more trust in the medical establishment. They don’t worry about tests not being covered by insurance, doctors not providing the right diagnosis, or any of the rest I worry about. And there’s so much trust in general! They don’t edit what they tell doctors, worried about being considered a hypochondriac. They don’t worry about being disbelieved. They state any problems and move on.

As if that wasn’t enough, there’s the followup, or lack thereof. After most of my medical appointments, there’s a parent or friend wanting to know every detail. Well ok, with my father’s current issues, we’ve been having followup calls with my mother. She wants to be there, but since she works and I don’t, and to be honest I have more experience with doctors, I’ve been going to the appointments. But for my friend, when it’s done, it’s done. I’m sure she updates her husband when they both get home at the end of the day, but that’s it. There’s no rush, no concern, no potentially life-changing news to impart.

Part of me is jealous, but mostly I’m amazed. I had forgotten that it could be like that. It’s a good reminder of why my friends don’t understand all of the crap I deal with aside from how I actually feel. They have no clue about the insurance nightmares, the anxiety, the stigma, or the huge amounts of time involved. It’s completely foreign to them. I might as well move to Kenya and expect them to automatically understand my life there.

I’ll try to remember this the next time I get a blank stare as I explain that even though I don’t work, taking care of my health is more than a full time job. Or better yet, maybe I should get them to come to an appointment with me!

Leave a Comment » | Educating, Expectations, Isolation, Rants, Support | Permalink
Posted by chronicrants

Why don’t I cry?

November 25, 2013

Sometimes I wonder why I don’t cry more about my health situation. I certainly have good reason to. Sometimes I want to, but I don’t. And I wonder why.

I just emailed a bunch of loved ones to let them know that my new, long-awaited treatment isn’t working. I thought about the many options I can try out next. I thought about the months and months of trial and error, of hope and despair, of improvements and horrible side effects, that now await me. I thought about it all, and I wondered why I wasn’t more upset.

Right now I am wrapped in a blanket. My hands are so cold that it’s hard to type. Yep, we’re getting some early winter weather here in New England. I want to take a hot shower to try and warm up, but I’m too tired to manage it. Should I want to cry?

I’m sure that part of my lack of crying is my positive attitude. I’m cold, but at least I have shelter, warm clothes, and the ability to get warmer if I have to (I can drive to a friend’s house, complain to the landlord about the lack of heat, etc.) My treatment isn’t working right now, and trying others could be tough, but at least I have options. That’s a hell of a lot more than what I had two years ago. Or even 1 year ago. Or even earlier in 2013. Overall, life isn’t that bad.

Then again, it isn’t all that good, either. My life is tough. Sometimes it really sucks. I want to date and have a job and play sports or even just take a long walk. Yeah, it sucks. But a long time ago I promised myself that I wouldn’t constantly get upset and cry over it. The thing is, I made that promise to myself about 20 years ago when I was a kid. I had always been a crier, and I didn’t want to be considered a cry-baby. Also, I was trying to prove to myself that I was stronger than my pain. That made sense back then. I occasionally cried over the pain, just like I occasionally cry now when it’s really bad. But the thing is, I still only cry when it’s really horribly extremely bad, and maybe there are other times when a release of emotion would be good for me. My health situation is much worse and much more complicated than it was 20 years ago. Back then, it was sporadic pain. Now it’s constant pain, fatigue, digestive problems, and more. Back then it didn’t stop me from doing anything other than certain sports. Now, it stops me from participating in so many important facets of my life. So why don’t I cry more often?

I don’t know what the answer to that question is. Maybe one day I’ll figure it out. Maybe I won’t. Right now I don’t think it’s important enough to worry about it actively, but I like to be self-aware, so I’ll keep it in the back of my mind and maybe the answer will come to me. In the meantime, I’m not in denial and I’m not suppressing my emotions. I know all too well what my situation is and I’m facing it head-on. And that feels good.

Plus, I have this blog as an outlet. I can’t believe I’ve written almost 400 posts now. I’ve found writing it to be very cathartic and the readers to be very supportive. So thank you all.

I admit it, I don’t have an answer. I don’t know why I don’t cry more. And right now, that’s ok.

4 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Pain, Support, Symptoms | Permalink
Posted by chronicrants

Giving in to yoga pants

November 23, 2013

It started in college. One summer a friend at I got an apartment. Every day after work she would change into “comfy clothes” as soon as she got home. She acted like this was normal, but it seemed to odd to me. After all, it’s not like she wore suits to work. But by the end of the summer, I was doing it too. It felt great to wear something stretchy and comfy instead of jeans or whatever. I was hooked.

More than a dozen years later, I still do that. The difference is, since I’m not working now, and I don’t feel well enough to be out all day every day, I spend a lot of time at home. That time at home means lots of time in comfy clothes. Sure, I could get formally dressed in the morning, but if I’m not going to leave the house, then why bother? In the summer, I’d rather get my “house clothes” sweaty instead of my “going out” clothes. When I cook, I’d rather spill on house clothes than going out clothes. I don’t have to own as many going out clothes if I’m mostly staying in, and when I’m in I don’t mind wearing the same thing over and over (as long as it’s clean.) And mostly, I just want to be as comfortable as I can be.

Last winter I didn’t have a ton of pants options for around the house, but this year I have fewer (one pair doesn’t fit, another has holes, etc.) I did ok by wearing my fleece pajama pants around the house for the last two months. They’re warm and so comfortable. That worked because I slept naked, so I wasn’t wearing the same pants all day long. But then it started getting colder, and I needed to sleep in my pajamas – can you imagine? Suddenly, I didn’t have much to wear around the house.

A couple weeks ago I was at a store buying something I really needed. Yoga pants had been on my mind for a while. Everyone swears by their comfort. I had tried a pair on recently and loved them, but felt I didn’t need them and couldn’t justify the expense of the purchase. Of course, that’s when I was still wearing my pajama pants during the day. So while I was in that store, I tried on a bunch of them, and WOW! I bought two pairs and I’m wearing one right now. They could even pass for going out pants if need be. That means that if I just need to run a quick errand, I won’t feel like I have to change, then change back in 1/2 hour. I can just stay in them. Most of all, they’re just so comfortable. They aren’t tight on my tummy, something that really bothers me both physically and emotionally because of years of physical discomfort there. They keep me warm. They were inexpensive (under $20 each.) They aren’t too tight around my legs and I don’t feel the material pull as I bend my knees, something which can bother me in jeans. And since they’re meant for yoga, I can comfortable wear them when I do my physical therapy exercises.

I’m not trying to tell a style of pants. I’m trying to sell the idea that when we’re dealing with physical discomfort on a regular basis, we deserve to be as comfortable as we can be, as much of the time as possible. That’s what I love so much about these pants, the comfort. We all need to find that comfort. For some that will be a certain style of pants. For others it will be blue-light filtering sunglasses. For others it will be just the right shoes. Hell, I could have just as easily written this about my new-found enjoyment of wearing a bra less often. But I guess that’s a story for another day.

14 Comments | Educating, Expectations, Limitations, Pain, Raves, Symptoms | Permalink
Posted by chronicrants

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