Wondering why I feel good

March 22, 2014

Today is my third good day in a row! The first was actually really great. Sure, I’m still in pain, and I don’t have as much energy as most “healthy” people my age, but I’m still loving how much better I feel! The question is, what’s causing it? I want to know the cause so maybe I can make it last! Here are my current thoughts:

  1. It’s my new medication. I started the new med exactly 3 weeks before my first good day. The problem is, usually good effects are felt within the first few days on this med. The changes are right – it’s my energy that’s improved, and that’s what I’d expect from this med – but the timing is off.
  2. It’s the medication I stopped taking. At my doctor’s suggestion, I stopped taking a medication two and a half weeks ago. Since the new med hadn’t had an effect yet, I wasn’t to worried about doing both so close together. I wouldn’t expect it to have this effect, but maybe it’s an indirect cause.
  3. It’s the supplement I stopped taking. I stopped it about a week ago when I realized my most recent gastrointestinal problems started just after I added in this supplement. Two days later, my gastro problems were mostly gone, and the third day everything was as it should be. That alone wouldn’t make me feel this good (my gastro problems were fixed for months before I started that supplement, and I didn’t feel this good then) but maybe in combination with something else it’s helping.
  4. It’s daylight savings time. I have seasonal affective disorder, so I always get extra happy and more energetic when we have the extra hour of daylight. The thing is, DST started two weeks ago, and I usually feel the effect within the first couple of days.
  5. It’s a fluke. This is an odd coincidence. Usually when I have a random good day it’s just that: one good day. Not three. But maybe this is just a longer fluke.
  6. Maybe it’s something else I haven’t even thought of yet.
  7. Maybe it’s a combination of all of the above.

Some of you might wonder why I’m not considering my new CPAP machine, and that’s because I only started it last night, two days after I started feeling so much better.

Right now, #1 seems the most likely, but the timing of it just doesn’t fit. But maybe there was so much damage done to my cells, that it was just delayed in taking effect. And my doctor did say it could take up to a month. I didn’t believe him based on all of the research I’d done and what other patients said, but maybe he was right. It’s odd that I’d have felt absolutely nothing for the first 3 weeks, though, instead of a more gradual improvement. But nothing else fits as well. It’s probably that with the other things added in. I just really, really, really hope it’s not a fluke! I’m loving this feeling so much, and I don’t want it to go away! I haven’t felt this good in many months, maybe even a year or more. It’s not like I feel “healthy,” but I sure do feel a hell of a lot closer than I did four days ago. I feel like I can do more so I’m trying to do more without overdoing it. I also feel that I’m thinking more clearly, so I’m reading more and getting more out of it. I feel happier, but I guess anyone would if they saw a spark of hope after feeling so sick for so long. Still, I’m just nonstop happy.

I guess there’s only one thing I can do for now: enjoy it while I can! I’m taking walks each day. I spent more time out with friends today than I normally would. I’m still not going to the party tonight that I had already been planning to skip. Right now I feel up to it, but I don’t want to overdo it. I’m reading more. I’m trying to catch up on insurance paperwork. And mostly I’m just appreciating this feeling of being more alert. It’s not perfect, but boy, I’ll take it!

11 Comments | Expectations, Fatigue, Healthcare, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Seeing potential for progress

March 7, 2014

Whether you’re a long-time reader or you’ve only stopped by recently, you’ve probably noticed that I’m on a mission to feel better. I know I’ll never be 100% better, of course, but there’s a lot of room for improvement.

Two years ago, when I had to leave my job due to fatigue, the doctors told me there was nothing they could do to help me. I started doing my own research, searching out new doctors and other practitioners, and changing my diet. I’ve already seen huge improvement, but I also have a long way to go. Sure, I don’t nap anymore, but I sleep 10-11 hours per night and I’m still tired. I’m in more pain than before. My digestive problems are soooo much better, but still not quite right.

Remember how I was dealing with too many doctors and not enough help? Well, I saw one thyroid doctor last week and he actually agreed to keep me on my current med and give me the new one I wanted to try. Unfortunately, it’s been a week and I haven’t noticed any change yet. Still, it’s a start, and I’m on a very low dose. And I’m seeing the other thyroid doctor next week. So I’m keeping my arthritic fingers figuratively crossed and hoping that he has some new ideas.

At the same time, I did some of the testing that the sleep doctor wanted me to do. Some of it came back normal, which is good. Some of it didn’t, though. As it turns out, in addition to circadian rhythm issues, I have a sleeping condition that’s sometimes lumped in with sleep apnea. It’s similar, but different. When the doctor told me about Upper Airway Resistance Syndrome, it described me exactly. When I got home I looked it up and again, it described me exactly. There’s no doubt I have it, now we have to work on treating it. The doctor warned me that the insurance company might not cover treatment, but we’re going to move forward and see what they say. With any luck, I’ll be trying out a sleep apnea machine in a couple of weeks, and I’ll know shortly after that if it’s helping or not. I’m not thrilled about having to use the machine, but if it works, it’ll be worth it!! After all, I’ve given up gluten, most dairy, most eggs, peanuts, and many of my favorite vegetables (broccoli, beets, parsnips, and more) for the sake of my health. This machine wouldn’t be so bad!

There’s no way to know what’s causing my fatigue, but more and more I don’t believe there’s just one cause. The more I think about it, the more I think there are many contributing factors. My energy improved as my adrenals improved. My energy improved and I tried different thyroid medications. And I’m guessing my energy will improve when my sleep disorder is treated. I doubt any one of these things would “fix” my fatigue, but I’m hoping that all of them combined might just do the trick!

So now I’m really excited to try the CPAP machine. I’m excited in a way that healthy people will just never understand. Because maybe, just maybe, this will make me feel better. Maybe, just maybe, this will allow me to socialize more, date more, go back to work, and in general resume my life. Here’s hoping!

8 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

A new approach to fatigue: fixing sleep

February 28, 2014

It amazes me that some people go to sleep at night, sleep for 6-8 hours, and wake up feeling refreshed, energized, and ready to start the day. I don’t think I’ve felt like that more than a few times in my entire life. But I’d like to try feeling that way more often.

Fatigue is a tricky symptoms. It can be caused by so many things. I’m pretty sure that mine is caused at least in part by my thyroid issues and adrenal problems, because as I fixed my adrenals, I felt better, and when I started dessicated thyroid they fatigue improved even more. I no longer fall asleep while reading (except in bed at night), I don’t nap during the afternoon, I can leave the house three days in a row without feeling like I’m going to collapse. Then again, I still have a ways to go. I can’t leave the house every day for a week, even if it’s only for small things. I can’t do laundry in the afternoon and then go out with friends for dinner. Spending an afternoon chatting with a friend is completely exhausting. I’m so grateful for all of my improvements, but I want to improve even more.

I’m trying new medications for my thyroid problems, and I’m hoping that will help, but I’m not going to assume that’s the solution. What’s if there’s another contributing factor? That’s why I saw a sleep doctor. This guy is one of the best around here, and I really liked him when I saw him many years ago. At that time, I did a sleep study that showed some apnea, but not enough for a cpap machine. That’s the machine where a mask over the face at night helps the person breathe. The doctor found that my circadian rhythm was off, like I was in permanent jet lag. He told me to take a very small dose of melatonin and use a blue light (sometimes called a sun lamp) in the mornings. That made a huge difference, and for a while I felt much better.

With the fatigue over the last couple of years, it seemed worth checking out my sleep again. Besides, I felt like I wasn’t sleeping well. I was waking up just as tired and sleepy as I’d felt when I’d gone to bed. In the last year, I’ve been having dreams that make me feel like my sleep isn’t as restful. In the last few months, I’ve been waking up a lot during the night. I knew something was wrong.

The downside of seeing such a top doctor is that he has very long waiting lists. I made an appointment in June and finally saw him in December. He suggested a few changes to the melatonin and blue light, and ordered some tests. One of those tests was a sleep study and his report on it popped up on my online hospital account today. (I’ll find out more when I meet with the doctor next week, but I can see notes as soon as he enters them into my records, which is awesome. I wish all of my doctors’ systems did this!) According to the doctor’s notes, I have sleep apnea and need to use a cpap machine. Ah hah! I knew it! Ok, I’m not happy about having to use the machine, especially as a single person who hopes to one day share my bed with someone else. On the other hand, what if this helps?! I can’t imagine anyone would feel energetic without ever getting proper sleep, so maybe this is one of the keys.

I don’t think this sleep issue is my entire problem. But maybe, just maybe, the sleep, thyroid, and adrenal issues combined are what’s causing the fatigue. I’m already addressing the thyroid and adrenal issues so maybe, just maybe, fixing the sleep problems will make me feel well enough to slowly, eventually, get my life back. Maybe I’ll be able to socialize more, get a job, and just feel better! Ok, I’m probably getting ahead of myself. It could take time. But what if…..?

14 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

Enjoying my boring holidays

December 24, 2013

Sometimes we all need a break, and today has been the first part of mine.

When I was kid, Christmas was the most boring day of the year. Sometimes we’d go to the movies or out to dinner at a local Chinese food restaurant, but mostly it was a day when my Christian friends were celebrating a holiday I didn’t celebrate, and my Jewish friends were out of town, so I had no one to play with.

When I got older, I spent several Christmases with boyfriends’ families, since I had (and still have) a habit of dating Christian guys. Then there were many years that I worked at a small company that didn’t give Christmas as a holiday. (Small companies are exempt from the federal holiday requirements.)  The rest of the staff took the day off but I wanted to save my vacation days, so I went in. It was great! I was the only person in the office Christmas Eve, Christmas Day, and most of the week. I cleaned out my email, emptied my inbox, sorted my files, and was incredibly productive. I listened to music and kicked my shoes off. It was actually really nice. It was probably my most productive week of each year.

Now Christmas is back to being boring. Most of my friends are out of town and the ones who are here are busy with holiday celebrations. But I decided to embrace the quiet instead of letting myself be bored.

I’ve been busy lately. Not busy by a healthy person’s standards, of course, but busy for me. By last night I was completely exhausted. I slept late this morning, something I always aim for but can rarely accomplish. I spent hours cleaning out my inbox, reading articles I’ve wanted to read, watching tv, and just relaxing. A friend posted on Facebook inviting everyone to her place for dinner, but I just didn’t feel like schlepping all the way downtown. Another friend invited me to join him and his wife for caroling. I didn’t want to schlep downtown and I especially didn’t want to carol, so that was easy to turn down. Then a friend invited me to her place to play a board game that we love with her and her husband. Now that one was tempting. I’d LOVE to do that! But not tonight. No, today is my day to rest, and I’m not going to leave the house unnecessarily. Besides, I know us. I know we’d be up late. And I need to rest. So I’ll be staying in.

Tomorrow Christmas and I figure it will be just like today. I’ll read and catch up and maybe doing some more cleaning up around my apartment. I’m being productive in my own way, keeping it small and simple, and I love it. Yes, I have a long list of things to do, but I’m ignoring most of them to read things I enjoy instead.

Boredom will come. A lot of my friends will be away through the weekend. I have a doctor appointment one day, and will spend some time with my mom one day, but by that’s it. By next week I’ll be anxious for friends to spend time with. But that’s ok. It’s temporary.

So for now I’m determined to make the most of these boring days. The first day has been great, and my only regret is that now I have to go cook dinner. For all of you not celebrating Christmas with family today and tomorrow, I hope your boring days are just as pleasant and relaxing as mine has been so far.

3 Comments | Expectations, Isolation, Limitations, Raves | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »