Where should I put my body?

February 11, 2016

 

I’ve been sitting too much lately. Way too much. I see all of those studies that say sitting is as bad for our health as smoking and I think, it’s not like I have much of a choice. Still, something has changed.

I used to sit a lot and knew I didn’t have a choice, and it felt right, even though my brain said it wasn’t good for me.

Now I sit a lot and it feels wrong. It feels like too much sitting. My brain said it’s bad for me, but so does my body. My back hurts. My neck hurts. I know I’ll feel better if I move around more.

The problem is, moving more would help my neck and back, but not the rest of me. I don’t have the energy to move more. I do what I can, but between my adrenal problems and everything else, I just can’t do more activity. It would be really bad for me. Recently I had a few days where I did more because I felt up to at the time, and then I paid for it the next day. So I know I need to dial back a bit.

The thing is, it still feels wrong. I sit in front of the computer or on the couch watching tv or in a comfy chair with a book and I’m happy with the reading or writing or watching, but my body hurts in ways that are specific to doing too much sitting.

What’s the answer? I don’t know. I don’t have the energy to walk more. Laying down would hurt in different ways, and would definitely harm me emotionally. Sitting makes the most sense, but it’s too painful.

What about you? Have you had this problem? Do you have any ideas of what might help? Please share your ideas in the comments. I’d love to hear them. One of you might just solve this problem for me and for others who read this!

19 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

10 great things about you

February 7, 2016

Sometimes with chronic illness it’s easy to focus on the bad stuff about ourselves and forget the good stuff. I’ve done it far too many times over far too many years. A couple weeks ago I wrote about chronic illness and self-esteem. Based on the response to that 2015-07-09 12.01.45and other articles I’ve written about this, I think a lot of you know what I’m talking about and you’ve had the same problem.

So today we’re changing that. I want you to do two things.

First, write down 10 great things about yourself. Write them, type them, record them, dictate to someone else who will write them. Your format doesn’t matter. Just do it. If it’s too hard, then start with 1, build up to 3, and try to get 10 over the next few weeks. These aren’t about your looks but about who you are as a person. Think about what makes you great. Keep that list and reread it every month, every week2015-11-01 14.07.39, every day, whenever you feel down – or whatever works for you. Add to it whenever you think of something else that should be on the list. When someone compliments you for something specific, add it.

Second, write at least one of those things in the comments below. You can write more than 1 if you want, but please share one. This 20120917_181648will help you and others in so many ways. It will show others that it’s possible to still be awesome when you have a chronic illness. It will give them ideas of things that are great about them, too. And when you declare to the world (or at least to the readership of this blog) that you love these things about yourself, you’ll be taking it heart and believing it more strongly than ever. So go for it!

To be fair, I figure I should probably share my own list. So here goes.

  1. I’m a good daughter, always there for my parents and helping them when I can.
  2. I’m a good friend. Even when I can’t do much physically, I listen, I offer advice, and I’m there for my friends.
  3. I’m a great crocheter.
  4. I go out of my way to help others, even people I don’t know very well.
  5. I’m a good cook. Ok, I have a limited range, but I do a good job with what I know.
  6. I’m strong. Life has made things tough for me, and sometimes I’ve given up temporarily, but eventually I always go back to trying hard to get better (or to at least not get worse.)
  7. I try my best to be a patient and health advocate for others.
  8. I’m good with kids.
  9. I’m interesting. I read a lot and have different hobbies, so I always have a variety of things to discuss with people. (Hint: this is handy for changing the topic when I don’t want to talk about my health.)
  10. I appreciate nature. Put me at the shore and I can happily sit and watch the waves for hours. Even pictures of trees make me happy. I always stop to smell the roses (literally!)

Ok, now it’s your turn. Take some time and create your own list. And remember to reread it whenever you feel a bit down.

17 Comments | Healthcare, Isolation, Limitations, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

Trying not to chicken out

January 28, 2016

I’m supposed to travel today and I really don’t want to. And I’m sad about that, because I know I should be excited. But then, I’m trying to get away from shoulds anyway….

We’ve been friends for over 20 years. At first I would visit her. Then I’d visit her and her boyfriend. Then I’d visit her and her husband (same guy.) Then I’d visit her, her husband, and their kid. I loved all of these visits. Sure, they were different. The activities were different and the atmosphere was different, but I always had fun. In the early days I’d fly to visit her. Once we both flew to a city between us, stayed in a hotel for a weekend, and had a fabulous time exploring a new city. For the last 8 years I’ve been able to drive to visit her, which is fantastic. Since I live near her parents, she stays with them when she comes to town and we get together alone or with friends or with her entire family and we always have a fantastic time. Always.

But a few years back, visiting got harder. My health got worse. I’d visit her, her husband, and their two kids, and I’d be thoroughly exhausted. Each visit got harder, just like other things in my life got harder. But still, I visited. Even though each time, I felt the energy draining out of me.

Then I stopped visiting for a long time. I didn’t want to stop, but I just couldn’t manage it anymore. It was around the time I stopped working. In fact, my visit to her house was the last trip I made before I left my job. We went apple picking and had a great time and by the time I got home, I was a mess.

Now I try visiting once or twice a year. Last summer I visited her and her youngest, while her husband was out of town with the two older kids. That was tiring, but not too bad. It was summer, and I feel worse in the summer, so there was that. And now it’s winter, and I feel better in winter, and I’ve got my new sleep machine helping me. But the idea of 3 days with her, her husband, and their 3 kids, is just exhausting to consider, never mind actually doing it.

I don’t want to go. I want to stay home. But I want to see my friend. I wish I could visit for a day, but it too far of a drive. I wish I could stay in a hotel where it would be easier to rest, but that’s not in my budget. I wish I was health, but that’s just not my reality.

She’s told me several times that the kids are really excited to see me. She’s asked what I’d like to eat while I visit. She’s a great cook, and does a wonderful job of making gluten-free foods that I can eat (while also avoiding all of my other trigger foods.) We’ve decided that I will go out with her and the kids either in the morning or in the afternoon each day, but not both. We’ve learned that I can’t handle both. We have it all planned out. But I’m still nervous.

I tried asking myself, “What’s the worst that could happen?” Well, that’s a bad question to ask. I know what could happen. I remember when I visited last winter and I was so sick that first night. Like, the maybe-it-would-be-easier-if-I’d-just-die kind of sick. It was horrible. I’ve felt that way before, but dealing with it in someone else’s home was so much worse. Of course, that’s not the worst, but it’s the most likely. And I can’t stand the thought of it.

It’s almost noon and I’m still in my pajamas. I need to shower, get dressed, eat lunch, pack up my bag, then drive. That will use up most of my energy for the day. And then there’s dinner with the family and 3 kids all wanting my attention at once because I haven’t seen them in months.

I love them. I really do. And I’d love to see them. But I don’t want to go.

Does this sound familiar to you? Please share your experiences with this kind of thing.

P.S. Yes, I have the option of not going. But I want to see my friend and her family. So I’ll go. But I’ve promised myself that if it’s too much, I’ll leave a day or two early. I just hope tonight is ok….

13 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

Chronic illness and self esteem

January 25, 2016

It can be hard to maintain your sense of self, much less feel good about yourself, when your whole life gets flipped upside down.

I didn’t have any self esteem problems around my chronic illnesses in the early days. That was partly from denial, partly from the illnesses not having too big of an effect on my life, and partly from having a wonderful mother who raised me to be full of confidence and self esteem.

I’m not sure when that changed, exactly, but I’m pretty sure it was around the time I had to stop working. Suddenly, when people asked “What do you do?” – a very common question to ask someone you’ve just met around here – I didn’t have an answer. I didn’t have a job. I wasn’t earning a living. I was constantly unsure of when I might have to move. I couldn’t do much activity. I had a ton of food restrictions And on top of all of that, I just felt like shit.

There were times I wanted to be there for my family or friends and couldn’t be. I couldn’t travel anymore to visit the ones who were farther away and I didn’t always feel up to doing things with the ones who were local. I wondered “Why would anyone want to date me?” even while I knew that was a horrible frame of mind.

Now I’m on the other side of that. I did some small bits of volunteer work from home. I found ways to be there for my friends that required less of me physically. I used the phone and video chat. If a friend needed help with something, I would research options for them online, from the comfort of my couch. I focused less on all the things I couldn’t do and more on the few things that I could. I realized just how many different interests I have, even if I can’t work on them every day. And I started to wonder “Why wouldn’t anyone want to date me?” I started to remember what makes me so great.

But today was the real deal. Today it really hit me. A friend texted me about wanting to set me up with a guy she’d met. She told me a bit about him. Then she said that she’d told him I have chronic pain. She’d told him I can’t eat gluten. She’d told him these things and I hated it, but not in the way I used to.

Not that long ago I worried about telling anyone about my health issues. I wouldn’t have wanted him to know because I was so insecure. I wouldn’t have wanted him to only focus on my health issues, and I would have assumed he would because I focused on my health issues. I would have assumed they’d be a problem because I saw them as a problem. Today was different. Today I didn’t want him to know because I didn’t feel that should come from someone else. It should come from me so I could present it properly. I didn’t want him to focus on it because I wanted him to see all the awesome stuff about me first. I didn’t want him to think I was only my illness because I no longer think that I’m only my illness.

He called right before I wrote those last few paragraphs. We had our first conversation. He did bring up the pain and gluten stuff. I said a bit, but I mostly brushed it off. Before I would have brushed it off because I was scared to talk about it. Today I brushed it off only because there were more interesting things to talk about.

Yes, my chronic illnesses are a huge part of my life. But they aren’t the only part of my life. They define big parts of me. But they don’t define all of me.

I know better than to assume my chronic illness-related self esteem issues are 100% in my past. But I hope they’re mostly behind me. And when they come up again in the future I’m going to reread this. Because we all feel less than stellar about ourselves sometimes, and if that happens from time to time it’s ok, but it shouldn’t be happening all the time. If it does, we need to find a way out. For me, that way is to help other people because it makes me feel so much better about myself to be able to do something for someone else; and it’s also to have a hobby that has nothing to do with my health, because that focus not only gets me out of my own head, but it gives me something to discuss with other people that has nothing to do with chronic illnesses.

What about you? What makes you feel better about yourself? And will you be doing more of it in the near future?

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

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