Energy work-arounds for a social life

July 26, 2013

Yesterday I had some friends over to my place. We all have chronic health issues, so we all understand how hard it is to do these get-togethers. Beforehand, talking on the phone, S mentioned how great it is that I had the energy to organize this. I pointed out that all I did to “organize” was send a few emails, and that by having it at my place, I didn’t need to expend the energy to go anywhere. See, she and the others thought I was being generous by offering to host, but really, I was saving up my energy by having them here. She laughed and appreciated my “sneakiness.”

Of course, this only works to a certain extent. I was still running around, opening and closing windows to adjust the temperature, getting food and water for people, cleaning up spilled food (I do love my dustbuster!) and generally trying to be a good hostess. By the end I was exhausted, despite having rested most of the previous day, and so I spent all day today in my apartment resting. It has only been in the last hour that I have begun to feel a bit less run down.

I was also resting today because I am going out tomorrow. Because of the weather, I wanted to be indoors. The friend I’m going out with suggested a few possibilities. I chose a small museum for which I can gain free admission through an old job perk. She’s thrilled to go, and I can save both money and energy. I’ve been there many times, so I know that it’s easy to navigate with lots of comfortable seating throughout the place, a great elevator, and small manageable rooms. Luckily, they change exhibits often, so it’ll still feel like a new experience for me. My friend is driving, so that saves me energy too. And with my handicapped parking placard, we should (I hope!) be able to park close to the entrance. She will buy food at the cafeteria and I will bring my own so that we can eat together there.

I have no plans for the following day, so if I’m tired then I’ll just stay home and rest.

This isn’t perfect, and I’m far from my energy goals, but it’s a start. By resting, hosting, and planning shorter activities, I can at least have a bit of a social life. It may not be the social life I used to have or the one I want to have, but I’m still incredibly grateful for every bit of it.

How do you manage your energy limitations? What do you do to maintain a social life? Please share any ideas you have!

2 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Incredible what 2 years can bring

July 24, 2013

The other day I wrote what has so far been my  most popular post. I felt inspired, so I wrote it. And then I went on with my day. But that night, just before bed, I looked at my calendar and saw the note I had made for myself a while back: it was the 2 year anniversary of this blog!

Anniversary

I feel bad, like I forgot a friend’s birthday. This blog has been so helpful for me, and I forgot its anniversary! It got me thinking, too, about how much has changed since I started writing this.

Two years ago I was just starting to feel much worse, which in hindsight is probably why I started this blog when I did. I wrote every single day for months, until my energy waned and I was forced to cut back. Still, even now it’s rare for me to have a day that I don’t think about what to write here. I have so many ideas, so many posts composed in my mind, and I hope that one day I can type them all out.

Two years ago I was typing into emptiness. My mom would sometimes read my blog, but that was about it. Now I have Subscribingdozens of readers on my mailing list, many more who follow me through twitter, and probably more I don’t know about who use Feedly, Digg, or some other reader. I get comments, which mean so much to me. It’s fantastic to know that people enjoy, are touched, or feel comforted by this blog. I want so much to reach out, and this my way of doing it.

Two years ago I thought I communicated well about my illnesses. Now I know better. As I write about things I often don’t even think to discuss, I realize how much I censor, whether intentionally or not. When I question if I should write about something, I realize that if I can’t be open about it here, in relative anonymity, then I must be pretty closed in real life. And when people comment on certain posts to say how rare it is to have these discussions, I remember that I’m not the only one with this problem.

Two years ago I was working full time. I knew my days of working full time were limited, but I expected to count them in years, not weeks. Now I have been out of work for almost as long as this blog has been around. I didn’t immediately return as I had hoped, and I’ve been coping with that. I don’t know if I will return to work some day. I hope that I will. But I’m trying to accept the uncertainty of it all.

Two years ago I thought I knew what was causing the worst of my health problems. Now, through a lot of research, I’ve found multiple other possible causes. I’ve discovered ways that I’ve been improperly treated. I have learned about new tests that need to be run. I have looked for new practitioners to see, including “non-traditional” ones.

Two years ago I thought I could never make “drastic” changes to my diet. Now I’ve redefined “drastic” because the changes are so worthwhile that I no longer think of them as being difficult. Food doesn’t matter. Health matters. Food is a means to an end for me, so I’ll do whatever it takes to make sure my food isn’t making me sick.

Two years ago I needed to vent. I got frustrated by so many health-related issues. My family and friends tried to understand, but they just didn’t get it. Now I have you. You understand. Sometimes things happen that suck and it helps to commiserate with people who’ve been through it themselves. Insensitive comments and rude actions need to be changed, but we also need to deal with them ourselves on a case-by-case basis. You’ve helped me do that. This blog has been more cathartic than I ever would have imagined when I started writing it.

So thank you for two wonderful years. It’s been a wonderful journey so far and I’m looking forward to seeing it continue.

—–

Edit: I forgot to mention that this is my 357th post here. In case you were wondering (I was, which is why I went back to look it up.)

1 Comment | Expectations, Frustration, Isolation, Job, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The myth of a miracle cure

July 21, 2013

Warning: This is a bit negative, even for me, so make sure you’re feeling positive and upbeat before you read it. And afterwards, go look at pictures of cute puppies or something. A picture of my favorite cutie is here, just for some balance.Pooch

I just read a book where a little boy has a fatal, degenerative disease. It was fiction, and the disease was made up, so I knew, based on the type of book, that the disease would be cured just before it killed him. And of course, it was.

My health problems are not fatal, but they’re degenerative. And there’s no miracle cure about to come fix me. The problem is, I don’t think most people understand that.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after. It happens practically over night. In fact, not only does the disease stop getting worse, but they even manage to improve the person’s health, as in the novel I just read, so that they get to be completely healthy. If only, right?

After so much exposure of this sort, people start to think that this is how it works in the real world. Those of us who actually have these diseases know better, though. We follow all the research on our disease. We know who’s working on it and who isn’t. We know how much money is being spent on our disease versus others. We know if the focus is on cures or on treatments or maybe, if we’re really lucky, on both. We know if any work is being done on preventative measures or on diagnostic techniques. Some of us follow the research in great detail and others only have a vague awareness, but we all know. We know, on some level, if a promising cure or treatment is in the works or if it’s something we’ll be lucky to see 40 years from now.

We also know that even if a cure or treatment is close, that doesn’t mean it’s accessible to us. If a cure was found today, how long would it take to reach its intended target? Well, the answer varies based on so many factors, but the answer is always measured in years, not in days like in the movies. Even if you manage to get into a human trial of the treatment, and even if you manage to get the drug instead of a placebo, human trials don’t happen over night. There are so many stages that come first, including animal trials. FDA approval is needed in the U.S. And there are great risks to taking an untested drug. You know how sometimes you take a drug knowing there’s a slight chance, or even a great chance, of a certain side effect? Well who do you think gets those side effects first? Yep, the testers. It’s definitely risky.

And sometimes it’s difficult or even impossible to get into those trials. If you have to wait for the drug to come to market, it can take so much longer. But wait, don’t forget the costs! The pharmaceutical companies just spent a whole lot of money developing whatever you’re about to take and they want to get some of that money back. In the books and movies you just get the drug. There’s insurance or a rich uncle or some compassionate benefactor. Too bad it isn’t always like that in the real world. If you don’t happen to have insurance to cover the drug (and it often doesn’t cover the new ones) and if you don’t have the money to pay for it (which could easily be tens of thousands of dollars – no that isn’t an exaggeration) then you’re just out of luck. Sorry. Too bad. Go home.

So the next time someone says, “Isn’t there a pill you can take?” send them over here. Maybe this will open their eyes just a bit. There isn’t a cure, or even a treatment, for every illness. Oh, how I wish there were. Some are getting closer, but people need to trust us when we tell them if there’s a treatment coming or not. We’re paying attention. We know these things. We’re not about to be surprised over night. If and when a treatment comes along, we’ll know about it long before we’re able to take it, and we’ll be counting down the years.

9 Comments | Educating, Expectations, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

Fuck the shoulds

July 17, 2013

I don’t get this mad very often, but right now I’m completely pissed off. I want to take all of the “shoulds” and get rid of them forever.

Let’s look at a few: I should handle this problem better. I should be smarter/wiser in this situation. I should be more patient. I shouldn’t let myself feel sick. I should have more self control. I should be a better friend/sibling/parent/worker by nature. I should know how to fix this. I should I should I should….

Ok, be honest, how many of these have you thought to your self? I’m betting at least one, but probably a lot more, not to mention many others I didn’t write out. Some of these are internal shoulds (we burden ourselves with these assumptions) and others are external (other people push them on us.) It’s important to look at the two separately, and I may do that on another day, but today I’m concerned that they exist at all.

Let’s get on the same page here: there are no shoulds in life. We are who we are. Well ok, there are some shoulds: We should all try to be decent human beings who care for one another and try not to hurt each other. But as for the rest, it’s complete bullshit. Giving birth doesn’t magically turn someone into a knowledgeable parent. Getting a job doesn’t magically make someone a great worker. Being sick doesn’t magically make someone strong enough to handle it. Just just not how life works.

I was recently talking with other folks with chronic illnesses and I noticed the same themes: people thought they should be able to handle their problems better just because it’s assumed of them. They felt they’d failed because they needed help. For some reason, not being able to do absolutely everything was considered a failure. Why is this? We’re only human. We ask for help with all sorts of things. When my friends’ roof leaked, they knew they couldn’t fix it themselves so they hired someone to do that. Is that so bad? When my grandfather has computer problems, he calls me to ask for help. What’s wrong with that? And if I feel too ill to get to the pharmacy to pick up a prescription then I’ll ask a friend to do it for me, and no one better dare suggest that’s any sort of weakness on my part. In fact, I think it’s a strength. It’s hard for many of us to ask for help, and knowing our limitations and respecting them enough to ask for help is a sign of how strong we are, not how weak.

A friend asked me to help her out with her kids. She was alone while their dad was out of town on business and she felt overwhelmed. Like me, she isn’t good at asking for help, so when I saw her message I knew it was serious. I was relieved that I was having a “good” day and was able to go over to help out. Sure enough, she was at her wit’s end. She was overwhelmed and exhausted. Having someone else there to watch the kids, give them food, keep them from crying, and all that other good stuff really helped her out. But afterwards, she talk about how she felt she wasn’t a good mother. Why? Because she felt she should be more patient. She should never get frustrated with her kids. She should never lose her temper. I pointed out that being a mom doesn’t make her less human. Of course she’s still going to lose her patience! There’s nothing wrong with that, as long as she keeps it within reason and asks for help when she needs it, like she did that day. But the part that pisses me off about this is that I’ve heard this same thing from so many friends who are moms! They all feel that they should be better, that simply because they have two X chromosomes and some kids, they’re supposed to magically be perfect parents. And they’re so embarrassed that they’re not perfect that they don’t talk about it, so they don’t realize it’s happening to everyone else, too. I think they tell me because I’m not a parent, so I can’t judge. But it also means I can’t reassure them.

The same is true for chronically ill folks. We hear the stories about the one-legged marathon runner or the person with MS hiking a canyon, and we figure we should  be able to at least get to the grocery store. We don’t talk to each other so we don’t realize that just about all of us are going through the same thing. We all have limitations. We all have obstacles we overcomes and obstacles we don’t. There are no shoulds in life, just life itself. We all have limitations, and expecting them to disappear because they should won’t help at all.

It’s time we all talk to each other. Let’s open up the discussion. We’re all doing the best we can and that’s fucking awesome. Let’s not diminish that. Let’s celebrate it!

10 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Support | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »