A little support goes a long way

July 24, 2015

I was having a tough day. I was exhausted, fatigued, and in a lot of pain. It all felt overwhelming. I was supposed to spend the night at my parents’ house, but just the idea of driving down to them felt like too much. With my mother’s encouragement, I went anyway. She knew I’d feel better when I arrived, and I was pretty sure she was right.IMG_20150724_195633

I rested for a while and finally got in the car with my things. I hit far too much traffic for 3pm on a Thursday, but after nearly two hours, I arrived at my destination – it took double the time it should have.

As soon as I walked in the door I got a big hug from my mother, a smile from my father, and warm greetings from two wonderful pooches. It shouldn’t have mattered. It shouldn’t have made me feel better. And yet, somehow, it made all the difference. After some cuddling with the guy above, I felt so much better. Some good homemade food, nice conversation, and tv rounded out the day and before I knew it, I was asleep on the futon with this cutie pie stretched out alongside me. There’s just something about cuddling with a dog that makes me sleep so much better.

The pooch has been great medicine, but my parents have been, too. The simple things help more than they know. Helping me to carry things, fetching things for me, and just generally trying to help me feel good showed me how much they care. They made me feel cared for. And that’s why now, just 27 hours later, I’m still in pain, but I’m less fatigued and my soul feels refreshed. I’ll spend an extra night here because I know that no matter how I feel, my parents will always do their best to help me feel better. So thanks Mom and Dad! You’re the best!

Leave a Comment » | Fatigue, Isolation, Kindness, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

It feels so good to be included

June 22, 2015

Over the weekend we had a family thing. As part of the thing, we ate. Simple, right? Well, it’s not quite so simple when you have a lot of food restrictions. But it gets a lot easier when it’s at my mom’s house.

My mom is amazing. She has always been my biggest supporter. Now, with my food issues, she goes out of the way to have food I can eat. There’s gluten-free bread in her freezer and gluten-free crackers in her pantry for when I visit. When I’m there, she prepares meals I can eat. She thinks it’s absurd not to do that. Fantastic, right?

She wasn’t planning to cook this weekend, though. Because of the way things were scheduled, the plan was to get takeout. My aunt wanted to pick up some prepared foods from an Armenian shop near her. My mom asked if I could eat that food and I said no, but that I’d bring my own food.

I always offer to bring my own food. I always say I don’t mind, but the truth is that I do. It sucks having to always bring my own food. It feels awkward when I’m invited to dinner at a friend’s house. I stand out at potlucks. I have to cook more and prepare more than other people do. Logistically it’s hard to always carry it. It’s a pain in the ass, really. And I have to eat the same old boring dishes while everyone else gets to enjoy something new and exciting. Still, what else can I do? I can’t always expect others to prepare gluten-free, dairy-free, broccoli-free, kale-free, peanut-free, alcohol-free, corn-free, caffeine-free etc. foods. It’s too much. So I bring food with me wherever I go.

In this case, there would be 13 people, and I didn’t want the others to have to accommodate me. My mom, ever the ally, made the offer, though. She asked where I could eat. So I listed a few general options. Indian food usually works, for example. My wonderful mother decided we should all eat Chinese food, one of my favorites, because there’s a Chinese food restaurant near them that has a lot of gluten-free dishes, and I’ve eaten there before, so we knew it was ok. I asked that my gluten-free dish be set aside separately, so it wasn’t contaminated.

But that wasn’t good enough for my mom. Oh no. She made sure all of the food was gluten-free! She and my aunt intentionally made sure every item they chose was gluten-free. She carefully stated it several times when she placed the order. And, sure enough, I could eat every single dish on the table! Sure, I skipped a couple (I don’t like shrimp and ribs don’t appeal) but I ate each of the others and loved it. Even better, I ate the way everyone else did. I didn’t stand out at all. It was such a treat!

I don’t expect every person to always find a way to include me in their meal plans. That simply isn’t realistic. But it’s so damn great when they do! Thanks Mom!

Leave a Comment » | Expectations, Gastrointestinal, Kindness, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , , , , | Permalink
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No! I’m not using my health as an excuse!

June 8, 2015

Somehow I had a strange insight when I was a kid. Well, the insight wasn’t strange, but having it at such a young age is probably unusual. I realized that if I ever used my pain as an excuse to get out of doing something when it really wasn’t a problem, no one would ever trust me again.

Maybe that’s why I felt so defensive today when someone accused me of that.

Ok, I’ll be fair. She thought I was doing it in an honest way. We were talking about her upcoming move out of state, and I said that I’d love to try moving someplace for just 6 months. I’d store my things in my parents’ basement and rent a furnished apartment near the ocean in Maine for 6 months, just to see how I liked it. She loved the idea, and pushed me to consider it. I pointed out that I couldn’t even think about it until my health was better. She asked if I was using my health as an excuse because I was really just scared to try it.

So I went on the defensive. I don’t talk bluntly about my health problems, but I’d had a recent setback that she hadn’t known anything about, and I was in no mood to have anyone suggest that being away from my doctors for 6 months was a problem only in my own mind. I told her something that she probably hadn’t realized: that while none of my health problems are fatal, that’s because they’re not fatal with proper treatment. But without proper treatment, yes, they could kill me. Ok, I didn’t happen to mention that death would take years, maybe decades, but that’s beside the point, right? And in the meantime, things could get awfully bad.

I’ll admit, I’m more fearful than I used to be. I used to jump at chances. Now, I’m weary. But who can blame me? So yes, I don’t take as many chances as maybe I could, or should. But then again, I take a lot of small risks on a regular basis, so who’s to say what’s right?

As for moving away for 6 months, I know that’s a risk I shouldn’t take. I don’t have a single doubt in my mind. What if I’d been away a few weeks ago when things went bad? I wouldn’t have gotten my blood work done, which means I wouldn’t have known to adjust my thyroid meds. I was having horrible symptoms of adrenal insufficiency, but I didn’t realize it until my naturopath pointed it out. My pulse was low, but I hadn’t checked it. My blood pressure was so low that she couldn’t even hear it. She tried three times. A machine wouldn’t have been able to read it either, so I wouldn’t have known about that. And if I was in Maine, I wouldn’t have visited my naturopath and started on folate (which I should have done a while ago, to be honest.) I would have gotten worse and worse until I couldn’t properly care for myself. Eventually, my parents would have had to come get me and take me to their house. I would have been bedridden. Now, I’m already seeing a bit of recovery. If I hadn’t caught it early, recovery could have taken months or years. So I have no doubt.

Even so, it sucks to have my judgment questioned. I know it’s hard for health people to understand this. As I pointed out to my friend, we’re taught that when you get sick, you take medicine and then you’re better. But for some of us it doesn’t work that way. We take the medicine and we stay sick. Sometimes we get even sicker. If we’re lucky, we stabilize. That’s what happened to me, I stabilized. Then that went to hell. I’ll probably never be stable. I may never be able to move away from my doctors for 6 months. I’m ok with that. I just need my support network to be ok with it, too.

2 Comments | Decisions, Educating, Fatigue, Frustration, Insensitive, Limitations, Medication, Pain, Rants, Support, Symptoms | Tagged: , | Permalink
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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
Posted by chronicrants

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