I understand your recovery restrictions better than you think

June 3, 2015

My neighbor down the hall had unexpected surgery last week. I told him that I’m glad to help with small things, but that of course, I’m disabled myself. He knows that. He has shoveled out my car for me and helped me lift heavy things a couple of times. But that’s all he’s seen of my limitations. So it’s not a big surprise that he doesn’t get it.

The other day he asked if I could walk down the street to the farmer’s market to get him some things. I had to explain that while I can walk down there most days, I wouldn’t be able to carry much back. That gave him pause. He had been focusing on his own lifting restrictions. He hadn’t realize that I had some of my own.

And it’s been like that as he’s explained each of his restrictions. He said he couldn’t walk down the street for several days. Well, often I can’t leave my apartment for days at a time. He said he can’t lift anything heavy for a while. I can’t lift anything heavy for the rest of my life. He can’t ride a bike for a while. I can’t ride a bike for the rest of my life. I didn’t give him my own comparable limitations because I don’t want him to feel that I’m belittling what he’s going through.

Still, it’s interesting that after being neighbors for almost 10 years, he has no idea what I live with. And how would he? We rarely say more than a few sentences to each other at a time. We’re friendly, but not friends. And to the outside world, I seem ok. Because on the days I’m not, no one sees me.

At this point, I’m trying to be clear: I can do X to help him but not Y. I don’t go into details and he hasn’t asked. But the next time he tries to explain how difficult a particular limitation is, I might just need to explain that I’ve had that particular limitation for many years, even decades. Then at least he won’t feel the need to explain.

Leave a Comment » | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Support, Symptoms, Unpredictable | Tagged: | Permalink
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I’m allowed to wallow in self-pity

May 28, 2015

I resent the idea that I should never spend a few days feeling sorry for myself. I see no reason why I shouldn’t be able to do that without judgement.

First, I’ll say that this is how I feel about my own self-pity. It’s different for everyone. I make no judgement on you just like I want no one else to make a judgement on me.

I set a few rules for myself. If I ever seriously consider suicide, I need to seek help. If it lasts more than 3 days, I need to pull my way out of it. If it leads to me not taking proper care of my health in a way that will have effects that last beyond those few days, I need to stop. I need to not feel bad or guilty about it. I need to let myself have my feelings.

That’s it. Those are my only rules.

Yesterday was one of those days. I was having pain in a new joint. Every 3-5 years this happens, and the pain is permanent. A long time ago I stopped hoping it wouldn’t be. So when I felt that all-new-yet-totally-familiar pain, I knew exactly what it was. And I was devastated. On top of that, it’s been humid lately, which means I just feel shitty in general. My pain is worse, my fatigue is worse, it’s all terrible.

Just 2 hours after the pain started I was sitting in my naturopath’s office describing it. The timing of that appointment was a tough coincidence. I started crying. One thing led to another, and she started offering me a homeopathic remedy to calm me down. She was careful with her words. She never mentioned “anxiety” or “depression” or anything similar, but obviously that’s what we were talking about.

Now, I understand why she wanted to calm me down. My adrenals are struggling. My pulse was low. My blood pressure, which is normally low, was so low that she couldn’t even get a reading after three tries. It wasn’t good. Crying like that would only make my adrenals worse. I get that.

But I also felt judged. Maybe it was all in my head. Maybe not. But that’s how I felt. The way she talked about my need to calm down and not lose hope didn’t sit right with me. And I resented it. Because I had every reason to feel bad.

Most days, I’m pretty happy and cheerful. On the bad days I’m less so. Occasionally I’m in a bitchy mood, but not too often. But every now and then, I just need a day or two of wallowing in self-pity. I’m dealing with life-long pain, fatigue, and disability. I spend hours every day dealing with my health in one way or another. My social life is planned around medical appointments, timing of medication, and how I think the weather will make me feel on any given day, among a dozen other things. Dates are too difficult to be fun. Making new friends feels like climbing a mountain, because they just don’t understand my limitations. I will be dealing with for this the rest of my life. It will most likely get worse over time, not better. I can’t work, and I can’t afford to live without a job. I don’t have the money to move to a nicer apartment, to get a dog, or to go to the theater. Technically I don’t have the money to pay my electric bill right now, either. I can no longer travel. I miss my friends who live farther away. My memory sucks. I have trouble remembering big events in my life, what I did last week, and the plot of the book I’ve been reading. I spend hours dealing with doctors, insurance companies, and pharmacies. I sit around the house wanting to be productive and get things done, and I just can’t do it.

Oh, and by the way, I also happen to feel like absolute shit.

So I give myself a few days to feel crappy. I feel sorry for myself. I feel like none of the treatments that I work so hard on will ever help me improve. I cry if I want to, I don’t cry if I don’t want to. I avoid going out. I avoid talking on the phone. I feel pissed off at the doctors, at my body, at the world. My anger and bitterness are so strong, you can practically see them vibrating off of me.

And that’s ok. I see absolutely nothing wrong with it. I know it won’t last. I just need to get it out of my system. I need to have a few cumulative weeks every year where I feel this way so that the rest of the time I don’t. That’s what works for me. And if it bothers others, well, then they need to deal with that themselves. They can’t put it on me. Because that’s not my problem. I have enough problems of my own to deal with, as it turns out.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Insensitive, Isolation, Limitations, Pain, Rants, Support, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Is it possible to rent an apartment near Boston with a therapy dog?

May 6, 2015

I have always wanted a dog. I grew up with a dog, and ever since he died when I was 11 years old, I’ve wanted another.

3-27-2015 4-01-42 PM

Sometimes I’m lucky enough to get to babysit for this cutie!

In my 20s I knew I didn’t have the right lifestyle for a dog. I worked long hours and traveled a lot and, if I’m being honest, the truth is that I just wasn’t ready for the responsibility. Then when I got so sick I had to leave my job, I was home a lot. I stopped traveling. But I was so sick that I could barely take care of myself, never mind another being.

Now it’s different. I’m still too sick to work, but I’m doing a lot better. I’m more stable. I’m taking care of myself ok. And I really really really want a dog. I ache to have a dog. Literally. When friends talk about their dogs, I ache to be in their shoes. When friends post photos on Facebook of dogs that need adoption, I ache to take those dogs home. I’m so ready to have a dog. And I’ve been mostly sure I could handle taking care of a dog, except for the walking part. Dogs need exercise, but some need more than others. I could get a dog that doesn’t need much exercise. I’ve been working hard at walking most days, and I’m taking short walks about 6 days a week! (Woo hoo! Those of you who’ve been reading this blog for a while know how big this is!) But dogs need to pee and poop more than once a day.

So I felt there were three big obstacles to me getting a dog:
1) Walking.
2) Money.
3) My landlord.

Then something changed. I was talking to a friend this week about how much I want a dog and my concerns about walks, and she suggested training one to use a litter box. Many people have suggested that, but it sounds ridiculous. The thing is, she did it! She had a dog that used a litter box! She also had a friend who did it. So maybe it wasn’t that ridiculous after all? I looked it up online and found some great resources. There’s even special litter for dogs! This totally solves problem #1!!!

Now, let’s assume I can handle the money aspects. Those are a real concern, but I’m working on them.

That leaves my landlord as the final obstacle, and I can’t imagine how I can possibly overcome that problem. You see, Boston is a pricey city. (When I say “Boston” I mean the neighboring towns, too. Just fyi.) There’s also a very low rental vacancy rate. This means that rents are high and landlords have a lot of power. I won’t get into all the details of the effects of the Recession on the housing market, etc. Just believe me when I say this is a tough place to be a renter. And the vast majority of landlords don’t allow dogs. Including mine. (My landlord doesn’t allow cats, either. And I believe birds are also off limits.)

Remember back in February when I said I was looking for an apartment? Well I did. I looked. And I gave up. I’ve been in my current place for many years, and my landlord hasn’t been raising my rent as much as they could. I pay a lot less than new tenants in my building. So even though I was looking in a less expensive area (where I’d rather live anyway) I couldn’t find anyplace as nice as mine. And I wasn’t even looking for a place that allowed dogs!

“Wait, what if it was a therapy dog?” you might ask. A lot of people have asked that. And yes, by law all landlords have to allow therapy pets. I would have no trouble getting my doctor to write the necessary letter. In fact, she has previously said that I should consider getting a pet because it would help me. So let’s assume I got the letter and I had a therapy pet. Now by law my landlord can’t kick me out, right? Sure, but they can “forget” to fix things in a timely manner. And when my lease comes up for renewal, they can raise my rent to what my neighbors pay – $300 a month more! I wouldn’t be able to claim discrimination if others pay that much. And future landlords might be just as difficult…. if I could even find a new place to live! Remember, I already looked at apartments last winter. Yes, there were places, but do I really want to live someplace smaller, darker, and louder just so I can have a dog? I’m not sure.And what if that place didn’t work out either? I really don’t want to move constantly.

So now I’m wondering, what’s the reality of living with a therapy dog when you rent an apartment? Do landlords retaliate? Or do they actually accommodate you the way they should? I know that no one person can speak for all landlords, but I would really love to hear about people’s experiences to find out if this is even possible. If you have a therapy dog and you rent an apartment, how has it been for you?

2 Comments | Expectations, Frustration, Healthcare, Isolation, Medication, Rants, Support | Tagged: , , , , | Permalink
Posted by chronicrants

There are no safe spaces

April 26, 2015

When I started this blog, it was so I could have a place to rant about the frustrations of having chronic illnesses. Over time, it’s morphed a bit, and I’ve covered many chronic illness-related topics from many perspectives. But today it’s time for a good old fashioned rant again.

I was in what I thought was a safe space. I thought it was safe, so I let down my guard. I’m so used to keeping my guard up that I completely forget about it, until I let it down and something proves that I should have kept it up.

Today’s incident was unexpected. I was in a room of people who care about social justice issues. The afternoon was spent talking about what it means to be in an oppressed group, and how to be an ally to an oppressed group. Most of the talk was about racism and sexism, but there was a bit of talk about homophobia, biphobia, and transphobia. I also brought up ableism. Everyone was kind, respectful, and interested in learning. I was asked some great questions by someone who just wanted to understand a bit more about what the disabled community is dealing with. I connected with another person with chronic illness. It was a fantastic afternoon. I had missed most of the event, but at least I’d made it for the end and was feeling more or less ok.

Then it was time for a closing exercise. It involved walking around the room, which I could have done a few hours earlier, but not at that point. At that point I needed to sit. And that’s when I became invisible. Most people avoided looking at me. A few looked, and then looked quickly away. They pretended I wasn’t there. It was horrible. I thought about leaving, but that didn’t feel like the right thing to do. I thought about getting up and participating, but I knew I couldn’t manage it. So I stayed seated. And then later, I cried.

Thankfully there was a friend there, and as people left, I pulled her aside, told her what happened, and cried. I don’t cry often, especially in public. But I was so upset! For once I had let my guard down, and look what happened! No one was mean. No one said anything insensitive. But they acted like I was invisible, and I just couldn’t handle that. Not like that. Not today.

I’m still hurting. I can’t seem to get it off my mind. Plus, I’m dealing with the physical effects: the adrenaline surge left me shaky at first, but I calmed down and ate, and that helped. Still, for someone with adrenal insufficiency, that’s not good. And of course, crying is tiring, even when it’s a short cry. So now I’m drained, but I know I need to wake up early for a doctor appointment tomorrow. Damn!

And I’m just so pissed, because I was having a really nice day! I had wanted to attend this thing for weeks, and I wasn’t sure I’d be able to make it. Even this morning I had my doubts, but I made it and I’d had a really nice time! It was so wonderful until the end. And that just ruined the whole thing. I’m trying to hold onto that good feeling I’d had, but I just can’t seem to do it.

I put up with this kind of bullshit all the time. That’s why I’m so used to keeping my guard up. It feels like I deal with some sort of bullshit every time I leave the house, but this once, for just a short time, I thought I was safe. I’d dealt with the hurdles of getting there (and there were several, both at home and on the short journey) and I’d thought I was safe.

I left feeling sad, frustrated, discouraged, alienated, and mad. I left feeling like there are no safe spaces. My chronic pain support group has been safe with health stuff, but my guard is up for biphobia when I’m there… what if I mention a date with a woman and someone reacts badly? Today’s event was the one space where no sort of -phobia or -ism is tolerated, but being ignored and avoided had the same effect.

Please, someone, prove me wrong. Tell me about a safe space. Or if you need to vent about your own similar experiences, go right ahead. Leave your thoughts in the comments and do your own venting.

I just hope that one day, somehow, some way, I really will find a safe space.

4 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Rants | Tagged: , , | Permalink
Posted by chronicrants

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