Just a warning for the guys – this post contains health information of a feminine nature. I know the HPS guys know exactly what I mean. Read at your own risk.
This weekend wasn’t what I had in mind. I had slated it as a “restful catch-up weekend.” No adventure fitness, no work obligations (at least not too many), no real commitments and maybe a trip to the mall in search of a few fall wardrobe items.
My body had other ideas.
Friday I felt excessively tired. I woke up, poked my big toe out of the covers and rolled over with a moan. I wasn’t ready to get up. I was warm and sleepy and wanted nothing more than to stay put. But, the clock showed that I was already running a half-hour late, so I groggily went about the business of getting ready for work. (I’m loving this new haircut – done in five seconds flat!).
Even after my shower I felt overwhelmingly tired. I took my temperature – normal. So, off to work I went, falling asleep on the bus. By about 1:00 pm I was fighting to stay awake at my desk. I’d been feeling so much better lately, even normal, and hadn’t had this sort of extreme fatigue in a while. It wasn’t a tough week at work, even with the freelance commitments and HPS duties on top of my every-day work life.
A trip to the bathroom explained a lot. It’s that time of the month. For women with Hermansky-Pudlak Syndrome, “that time of the month” can sometimes be quite an experience! I normally have at least one day of very, very heavy bleeding, but the rest of the time it’s pretty normal and usually lasts seven to eight days – maybe a tad long but not that bad.
But every now and then I have the period from hell.
By 2:00 pmish, I was back in the bathroom. A half hour later I was back again, and then a half hour later back again. My body felt achy from head to toe by the end of the day.
I caught the bus home, and after yet another trip to the bathroom, fell immediately into bed. I turned on NPR, but don’t remember a thing about the news. I woke up about 8:00 pm and decided I’d better get something to eat. I’d taken my Pirfenidone/placebo when I got home, and you’re supposed to take it with food. I didn’t feel like eating, but found something in my nearly empty kitchen.
I settled down in front of the TV with some water and a sandwich and found a documentary. I have a cheap little throw rug in front of my TV. People think it’s decorative, but there’s a practical purpose to it. Being single, I prefer to eat in front of the TV rather than sitting by myself at the table. It isn’t that I drop a lot of food on the floor, but if I do I don’t always see it. It’s much easier to pick up a rug, shake it out and throw it in the washing machine every now and then than to try to find little crumbs.
So, I sat on my little rug, eating my sandwich, and suddenly felt a huge gush. I had already changed into my night clothes, and as I stood up I felt that the backside of my nightgown and robe were soaked with blood. The rug was soaked with blood. As I ran to the bathroom blood was running down my legs making a trail as I went, and as I stood in the bathroom organizing the necessary supplies and some old towels, the blood just kept gushing, dripping onto the bathroom rug and all over the tile floor. You might have thought I was peeing, only it was blood.
It subsided in a few minutes and I did my thing, got out the stain remover for the carpet, but decided the nightgown and robe were so soaked they probably were beyond stain remover so I just threw them away. I scrubbed the carpets, gathered a stack of old towels to put down in my bed in case the same thing happened in the night, and went to bed.
All night I was miserable. I had the worst cramps and my joints all hurt. My stomach was very upset, so if I wasn’t up dealing with bleeding I was up dealing with diarrhea. I just wanted to lay in a ball and moan.
Of course, getting so little sleep, I slept in for the morning. My phone rang several times, but I didn’t bother answering it. I didn’t want to talk to anyone – I just wanted to go to sleep!
Today was the annual Overland Park Fall Festival – an event I always enjoy. There’s music, carnival food that is definitely not on my diet, and lots and lots of crafts that make great Christmas presents. Even though I felt horrible, I was determined I was going to this festival only a few short blocks from where I live. I stocked up my purse with what most women would probably consider a week’s supply of female items and off I went, achy and crampy and hungry because I hadn’t been to the store. I got about two blocks before it became evident I wouldn’t make it to my naughty festival food. I had to eat something NOW! I felt dizzy and dehydrated.
So, I stopped at the pizza place on the corner. Everyone else, awaiting the parade, had the same idea. I’ve never seen it so crowded! It took a half hour to get my order, and there was no where to sit except on a very creaky bar stool. So there I sat, sipping some water and trying not to faint because I was starting to feel dizzy. An old man nursing a beer sat next to me and stared at me constantly the entire time I was there. It was very unnerving. I tried smiling at him (to let him know I was aware he was staring) but that didn’t help. I wasn’t feeling particularly chit chatty, friendly or shall we say, feeling the love of the universe. I ate my slice of pizza (which was a smashing hit with the upset stomach) and continued onto the festival.
Why did I bother? I walked up and down the rows of booths and saw nothing. Nothing I’d seen in past years that I’d wanted to buy. Nothing new and interesting. Nothing. There were probably all kinds of treasures to be had, but I was so miserable I could hardly stand to look at them.
It seemed like the place had been overrun with strollers, and I felt a mix of my usual pangs of frustration at not being able to have children (To be admitted to the drug trial, I had to agree to not get pregnant. By the time the trial is complete at its current rate, I’ll probably be in my 40s before I can consider getting pregnant – if I ever meet a guy to start with.). Watching women with babies and strollers can sometimes be really upsetting to me. At the same time, as my entire body hurt, I was grateful that as crappy as I felt, I didn’t have some little kid hanging on me too.
My church is across the street from the park where the fall festival is held and they always have a rummage sale while all those people are so conveniently nearby. I stopped in to see how it was going and felt as though I should volunteer to help put everything away when the sale ended. But I didn’t. I felt horrible and I didn’t think that moving boxes of stuff about when I felt so weak to start with was a good idea. Yet I wonder if everyone wondered why I stopped by yet didn’t volunteer to help. It felt awkward.
I went home and crashed for a few more hours. After I talked to Ryan on the phone, I went to the grocery. I couldn’t put it off. I was out of food, out of cleaning supplies and getting pretty darn close to being out of toilet paper! I did manage to get there and back, hauling a load in my little cart, but I had to rest about 45 minutes before putting things away.
The good news, however, was that the trip didn’t make me even a little out of breath, as it had over the summer! I was tired, but it wasn’t from working so hard to breathe!
Strangers might really wonder why I’d share such intimate details about my life – who cares right? But, the purpose of this blog is to record stories about living with HPS (as well as record HPS news and events.) For women, this can be pretty typical of living with HPS.
I should note, however, that I usually take nasal DDAVP when my period starts, and I’m currently out of it. This seems to not be the recommended method of choice right now – but it’s been working for me. I haven’t had a period this bad in a year.
This weekend wasn’t what I had in mind. I had slated it as a “restful catch-up weekend.” No adventure fitness, no work obligations (at least not too many), no real commitments and maybe a trip to the mall in search of a few fall wardrobe items.
My body had other ideas.
Friday I felt excessively tired. I woke up, poked my big toe out of the covers and rolled over with a moan. I wasn’t ready to get up. I was warm and sleepy and wanted nothing more than to stay put. But, the clock showed that I was already running a half-hour late, so I groggily went about the business of getting ready for work. (I’m loving this new haircut – done in five seconds flat!).
Even after my shower I felt overwhelmingly tired. I took my temperature – normal. So, off to work I went, falling asleep on the bus. By about 1:00 pm I was fighting to stay awake at my desk. I’d been feeling so much better lately, even normal, and hadn’t had this sort of extreme fatigue in a while. It wasn’t a tough week at work, even with the freelance commitments and HPS duties on top of my every-day work life.
A trip to the bathroom explained a lot. It’s that time of the month. For women with Hermansky-Pudlak Syndrome, “that time of the month” can sometimes be quite an experience! I normally have at least one day of very, very heavy bleeding, but the rest of the time it’s pretty normal and usually lasts seven to eight days – maybe a tad long but not that bad.
But every now and then I have the period from hell.
By 2:00 pmish, I was back in the bathroom. A half hour later I was back again, and then a half hour later back again. My body felt achy from head to toe by the end of the day.
I caught the bus home, and after yet another trip to the bathroom, fell immediately into bed. I turned on NPR, but don’t remember a thing about the news. I woke up about 8:00 pm and decided I’d better get something to eat. I’d taken my Pirfenidone/placebo when I got home, and you’re supposed to take it with food. I didn’t feel like eating, but found something in my nearly empty kitchen.
I settled down in front of the TV with some water and a sandwich and found a documentary. I have a cheap little throw rug in front of my TV. People think it’s decorative, but there’s a practical purpose to it. Being single, I prefer to eat in front of the TV rather than sitting by myself at the table. It isn’t that I drop a lot of food on the floor, but if I do I don’t always see it. It’s much easier to pick up a rug, shake it out and throw it in the washing machine every now and then than to try to find little crumbs.
So, I sat on my little rug, eating my sandwich, and suddenly felt a huge gush. I had already changed into my night clothes, and as I stood up I felt that the backside of my nightgown and robe were soaked with blood. The rug was soaked with blood. As I ran to the bathroom blood was running down my legs making a trail as I went, and as I stood in the bathroom organizing the necessary supplies and some old towels, the blood just kept gushing, dripping onto the bathroom rug and all over the tile floor. You might have thought I was peeing, only it was blood.
It subsided in a few minutes and I did my thing, got out the stain remover for the carpet, but decided the nightgown and robe were so soaked they probably were beyond stain remover so I just threw them away. I scrubbed the carpets, gathered a stack of old towels to put down in my bed in case the same thing happened in the night, and went to bed.
All night I was miserable. I had the worst cramps and my joints all hurt. My stomach was very upset, so if I wasn’t up dealing with bleeding I was up dealing with diarrhea. I just wanted to lay in a ball and moan.
Of course, getting so little sleep, I slept in for the morning. My phone rang several times, but I didn’t bother answering it. I didn’t want to talk to anyone – I just wanted to go to sleep!
Today was the annual Overland Park Fall Festival – an event I always enjoy. There’s music, carnival food that is definitely not on my diet, and lots and lots of crafts that make great Christmas presents. Even though I felt horrible, I was determined I was going to this festival only a few short blocks from where I live. I stocked up my purse with what most women would probably consider a week’s supply of female items and off I went, achy and crampy and hungry because I hadn’t been to the store. I got about two blocks before it became evident I wouldn’t make it to my naughty festival food. I had to eat something NOW! I felt dizzy and dehydrated.
So, I stopped at the pizza place on the corner. Everyone else, awaiting the parade, had the same idea. I’ve never seen it so crowded! It took a half hour to get my order, and there was no where to sit except on a very creaky bar stool. So there I sat, sipping some water and trying not to faint because I was starting to feel dizzy. An old man nursing a beer sat next to me and stared at me constantly the entire time I was there. It was very unnerving. I tried smiling at him (to let him know I was aware he was staring) but that didn’t help. I wasn’t feeling particularly chit chatty, friendly or shall we say, feeling the love of the universe. I ate my slice of pizza (which was a smashing hit with the upset stomach) and continued onto the festival.
Why did I bother? I walked up and down the rows of booths and saw nothing. Nothing I’d seen in past years that I’d wanted to buy. Nothing new and interesting. Nothing. There were probably all kinds of treasures to be had, but I was so miserable I could hardly stand to look at them.
It seemed like the place had been overrun with strollers, and I felt a mix of my usual pangs of frustration at not being able to have children (To be admitted to the drug trial, I had to agree to not get pregnant. By the time the trial is complete at its current rate, I’ll probably be in my 40s before I can consider getting pregnant – if I ever meet a guy to start with.). Watching women with babies and strollers can sometimes be really upsetting to me. At the same time, as my entire body hurt, I was grateful that as crappy as I felt, I didn’t have some little kid hanging on me too.
My church is across the street from the park where the fall festival is held and they always have a rummage sale while all those people are so conveniently nearby. I stopped in to see how it was going and felt as though I should volunteer to help put everything away when the sale ended. But I didn’t. I felt horrible and I didn’t think that moving boxes of stuff about when I felt so weak to start with was a good idea. Yet I wonder if everyone wondered why I stopped by yet didn’t volunteer to help. It felt awkward.
I went home and crashed for a few more hours. After I talked to Ryan on the phone, I went to the grocery. I couldn’t put it off. I was out of food, out of cleaning supplies and getting pretty darn close to being out of toilet paper! I did manage to get there and back, hauling a load in my little cart, but I had to rest about 45 minutes before putting things away.
The good news, however, was that the trip didn’t make me even a little out of breath, as it had over the summer! I was tired, but it wasn’t from working so hard to breathe!
Strangers might really wonder why I’d share such intimate details about my life – who cares right? But, the purpose of this blog is to record stories about living with HPS (as well as record HPS news and events.) For women, this can be pretty typical of living with HPS.
I should note, however, that I usually take nasal DDAVP when my period starts, and I’m currently out of it. This seems to not be the recommended method of choice right now – but it’s been working for me. I haven’t had a period this bad in a year.
Comments