Should I go out tonight?

February 14, 2013

I think for healthy people, this question only comes up when they don’t have plans, or if they’ve been going out every night and feel that they need a night in. For me, this seems to come up constantly. I’m always weighing how I feel and how much I want to go to something against what I might miss out on in the future if I do go out. Today, the decision is whether or not to go to a Valentine’s Day singles party tonight. Yeah, I know, but it’s not as bad as it sounds. It’s a great group where I’ll know a bunch of people, and I’ve been to their Valentine’s singles party before and it was fun.

I haven’t been doing much lately. Tuesday I didn’t leave the house at all, and just had my sex-friend over for a couple hours. Yesterday I only went out briefly to a chronic illness group for an hour. And today I haven’t left the house at all. So it would be nice to go out.

Then again, I slept horribly last night. I woke up at 3am and only dozed on and off after that. And I have a day full of activity planned for tomorrow. Plus there’s the hassle of getting dressed up and having to put on a happy face. If I knew this event would happen again soon, I’d be happy to stay in and just do this next time, but unfortunately, the next one is a full year away.

Reasons I should go out:

  • I’ll see a lot of friends I really like.
  • I might meet someone interesting.
  • I can practice flirting.
  • Maybe someone will flirt with me.
  • It would get me out of the house and interacting with people.
  • I’m pretty certain I’ll have fun if I go.

Reasons I shouldn’t go out:

  • It will take away my remaining spoons, and possibly cause a deficit.
  • I might be too worn out to have fun tomorrow, which is a one-time family thing.
  • Because of the snow (and the resulting parking shortage) I can’t drive, so I’d have to risk taking the germ-infested subway.
  • I’ll have to either shake hands with a lot of people, or else come up with a reason not to shake hands that doesn’t drive away the flirtations.
  • I’ll have to answer the question “What do you do?” over and over and over and over. I hate that question.
  • I’m not ready to date yet.

I’m leaning towards staying home, but I just can’t decide. I keep thinking about all the friends who will be there tonight, so even if I don’t meet or flirt with anyway, I know I’d have friends with them. What holds me back is tomorrow. I must have energy for tomorrow. An elderly relative is in town and this could be the last time I see him, since I can’t travel and he might not be able to either after this. If I knew I could do both it would be different. But since I can’t be sure….

What would you do?


Using sex as a treatment method

February 12, 2013

Every week WegoHealth hosts a Twitter chat for health activists, and today’s chat was about sex and sexuality. Then a couple hours after that I actually had sex, a rare occurrence. So with sex on the mind, how could I write about anything else?

I don’t have sex as much as I’d like. I haven’t been dating much, and I only sleep with people with whom I feel a connection, so sexconvothat really limits me. Then a couple months ago, I got a text from D. D and I dated many years ago. Then after we dated, we slept together on an off for a couple of years. Then we lost touch for several years. We’d known from the start we’d never work out as a couple – he didn’t believe in monogamous relationships and I wasn’t interested in anything else. Still, he’s an excellent lover, and he thinks that same of me, so we kept having sex. I’d thought about him often in the years that we’d lost touch, so I was pleased when he texted me. We’ve been together several times since, and it’s been great. I have to be on guard that I don’t get emotionally involved, but aside from that, it’s all good. We get along great, we trust and respect each other, and we each think the other is fantastic in bed. Since I’m not dating anyway right now, this is just about perfect. (It would only be more perfect if we could sleep together more often.)

There’s another thing about D: he’s ok with the health stuff. When I first told him, he didn’t bat an eye. He’s always been Feelin' Satisfiedsupportive, without trying to “rescue” me. A lot of us know how rare that is. I once wrote that three different times I have crapped on a guy during sex. He was one of those guys, and he just shrugged it off and suggested we take a shower. Fantastic, right? Even tonight, in the middle of things, he kept starting to grab my arm, then stopping. Then I realized why – I told him he could grab it and it wouldn’t hurt me, and he immediately did. When we were together years ago, that would have hurt, and he remembered and was trying to be careful.

The point is, I can trust D around the health stuff. And that’s why I didn’t cancel on him tonight, even though the past 24 hours had been lousy. The fatigue hit hard last night, for the first time in a month or two. That was physically horrible and mentally discouraging. Then I woke up during the night to a lot of gas, cramping, constipation, and diarrhea. It was a terrible night. It took me several hours to get back to sleep. I woke up in the morning feeling lousy. I got out of bed late. I had no appetite most of the day. I spent most of the afternoon (I spent the morning in bed) watching tv, which I never do anymore. Usually when I have nothing to do I read, but I didn’t have the energy for that today. And to add insult to injury, the hormone mess meant that my sex drive was almost gone. I hadn’t been having sex fantasies, masturbating, or even feeling an urge for sex lately.

So why didn’t I cancel? Several weeks ago I was having a bad day when D was supposed to come over. I was in a lot of pain, and had been for days. I figured it was worth adding to the pain with sex. I’ve written before that sex can help with pain (this is true for me, but I’m not a doctor and am not giving you medical advice,) and that time a couple weeks ago it really did the trick. I felt much better afterwards, with the pain almost completely gone. I figured it was worth seeing if sex might help again today.

And help it did. It helped on many levels. Physically, I think it gave me needed exercise, and will contribute to better sleep tonight. He also gave me back my sex drive, which felt (and still feels) fantastic. Emotionally, it felt great to be close to someone and to cuddle for a while afterwards, having him hold me. Plus, I always feel wonderful about my body after sex. I feel sexy and desirable. Usually I dislike my body. I’ve always been comfortable with my appearance (except during Prednisone-fueled weight gain) but I don’t like the illness parts. This leads to a lot of negative thoughts about my body (such as I hate that I feel like crap! and Why does my body suck so much?). But it’s hard to have negative thoughts about my body after a half dozen orgasms, and after watching D’s reactions to my touch. Besides, how broken could my body be if I’m still capable of making someone scream like that?

Sex won’t solve all my health problems, even in the short term. And sex with the wrong partner won’t help at all. But when it helps, oh boy does it help! I’m not about to miss out on that.


Why I really want to shovel snow

February 10, 2013

We all have chores that we hate to do, but there’s something about having to ask others to do them that really changes that attitude, at least for me.

I have always hated having to ask others for help, and I especially hate depending on them when I know it’s something they’d Blizzard 2013rather not do either. That’s why I’ve turned down my mother’s offer to clean my apartment. I know she would hate it, and she really doesn’t have the time for it. So I pay someone. I pay someone to come once a month to do the things that I can’t do.

Now the truth is, when I was able to clean, I didn’t do it as much as I should. At this point, I’d gladly do it. Ok, maybe not gladly, but you know what I mean. Unfortunately, dragging a vacuum is too painful, stretch and dusting and grasping a cloth to dust would hurt, and bending over the tub to scrub it out would knock me out for days.  And then there’s the energy it would take, energy that I just don’t have to spare. I know that I can’t do it now, but I sure would like to.

Shoveling snow is the same. I used to think of shoveling as a chore. I live in the Boston area, so it’s not like this was a rare occurrence. I did it because I had to, but I didn’t enjoy it. And now? Now I dream that I could.

We got more than 2 feet of snow this weekend. Since I rent my apartment, I thankfully don’t have to worry about shoveling out the stairs to my building or the sidewalks, but I am definitely responsible for shoveling out my car if I ever want to drive it again before the spring thaw.

After spending two days indoors, I felt antsy yesterday, so I put on many layers and went for a slow walk. I chatted with neighbors as they shoveled out their cars and driveways, and I was amazed at the envy I felt. It’s backbreaking work. It takes hours. It’s thankless. And I wanted to be doing it. The jealousy practically dripped from my mouth as I commented on what a good job each person was doing.

I’m lucky. A neighbor had offered to help me out. And several of the other neighbors who I had just met on my walk joined in. I had been friendly to them, and they saw me help someone whose car was stuck (since I couldn’t shovel or push, I drove the car while the owner and others pushed it.) I guess it was a bit of karma or something. Or maybe it was the damsel in distress effect (let’s face it, there are men who just love to help out a “helpless” woman and I told them that I had a “physical condition” that stopped me from shoveling.) What it was, the big relief is that my car is free now. Still, I worry about what happens when I drive someplace. If I come back and there’s no free spot, I won’t be able to shovel out a space on my own. And what about the next time it snows?

I’m not naive. It could be much worse. But at the same time, this is frustrating and stressful for me at a time when I really don’t need more frustration and stress. And it won’t go away. I continue to hope that my health will improve. One day I may be able to dust, but my guess is that shoveling snow will always be beyond my abilities. I want to be self sufficient and right now that’s not an option. Some days I can accept that, some days I can’t. I guess this is one of the days that I can’t.

How are you handling the winter weather?


Good health news!

February 5, 2013

I’m thrilled that for my 300th post on this blog, I’m reporting on some happy news. Sure, I rant about the frustrations and injustices of living with chronic illnesses, but I also think it’s important to celebrate and revel in the the good news whenever it comes our way.

Usually, a good medical appointment is when I’m told that I’m not getting worse. That tends to be the best that I hope for. So I’m still not sure how to interpret yesterday’s appointment where I was told I’m getting better. I think I’m still in shock.

Years of traditional medicine have failed me, so last summer I started seeing a naturopath. I did my own research first, figured out the treatment plan I wanted, then called around and did phone interviews with several people. I chose someone who was reasonably priced (though far from the cheapest), more local than many others, had similar treatment methods to the ones I wanted to pursue, and generally sounded like someone I’d want to work with. It took a while to research and find someone, but it seems to have been worth it.

The naturopath put me on a new diet and some supplements. The diet clearly started working right away. The daily nausea, cramping, gas, diarrhea, and constipation went away! I didn’t even realize just how bad they were until they were gone. Then I started to notice other changes. I had more energy. I didn’t unintentionally fall asleep in the middle of the day. I could take a short walk without needing a nap afterwards. I could do laundry and go grocery shopping in the same day (I’m still amazed by that one!) I could read a book and remember most of it by the time I reached the end, without having to reread the first chapters. These were all amazing improvements, but they were relatively small. Still, my naturopath felt that my gradual improvements were better than having big improvements that could backslide. That whole slow but steady thing. She felt I’d even be able to return to work in a year (this was said several months ago, so we’ll see….) She was positive, but I had my doubts.

Yesterday was the appointment that changed my attitude. My pulse was better. My ph balance was normal – and you chronic illness folks know how odd it is to be in the normal range of anything. My weight was good. My blood pressure was still too low, but most other measurements looked good. There were signs that my leaky gut had healed. What really shocked me was the part I should have seen myself. As she asked me probing questions about my recent health and abilities, it became clear that I’ve improved more than I’d realized. Yes, my memory is still a big problem, but it’s much better than it was. I hadn’t really grasped that before. My final IBS-type symptoms seem to have subsided, and I’m even having bowel movements twice a day. I hadn’t given that enough thought to realize it was happening, and what an incredible improvement it is. My pain is so much better that I only think of it when I’m having a flare. Sure, I still have too many flares, but they’re not as frequent as they were, and I do so much better in between. I knew that, but hadn’t put it in context with everything else, especially since I’m still restricting my activity to avoid what I know will cause pain. Then again, I’m walking up 2 flights of stairs at a time now – a record for me! My energy is a lot better. I knew I was doing more in a day, but she pointed out that I didn’t need “recovery days” anymore. I spent last Saturday with my mother. I left my house at 11am and got home at 6pm. A year ago, I might not have been able to do that, or I would have taken a nap at her house. And a year ago, I would have spent the entire next day at home, recovering, feeling lousy. I might have even needed more than one day of feeling lousy at home before I was “reocovered.” Instead, I felt good when I left her place! Ok, I wasn’t ready to do lots more activity, and I was tired, but I wasn’t really fatigued. And when I got home, I cooked dinner. Amazingly, I felt fine the next day! It was a quiet, laid back day because I already had plans to have a friend come over and play board games, but if he’d wanted to do some light activity, like take a short walk, I could have done that. Sure, I probably wouldn’t have wanted to walk through a large museum or do anything else like that, but I was able to spend a few alert hours with my friend, without needing to lay down to rest before or after. This is HUGE!

For the first time, I was feeling positive about my health prospects, and then my naturopath told me that we are ready to focus less on stopping the damage to my body and to focus more on repair. I almost jumped up with excitement. And in an even more concrete show of how good she feels about my progress, instead of booking our next appointment 3-4 weeks out as usual, she wanted to book it 6 weeks out! Ahhh!!!!!

I still have a long way to go, so I’m trying to be patient, something I’m really not good at. There is so much I want to do, but I’m not ready for any of it right now. It’s a good sign that I want to plan for the future, especially compared to a year ago when I couldn’t even see the possibilities. Still, I need to be realistic. I’ll probably never ride a bicycle, but maybe, just maybe, in a year or two I could go back to work, and date, and go out with friends, and travel, and…. Well, even doing half those things would be amazing. And for the first time in a long time, it feels like one day it might be possible.