My pain levels have been getting increasingly higher over the past couple of days. So I was not really surprised this morning when I woke up and pain just raked through my body. I was thinking it was a case of cause and effect. Remember in school we spent days (weeks?) going over cause and effect. The flooding was the effect, the torrential rain was the cause. Sometimes it was easy to determine what the cause was. 'My finger is bleeding because I cut it.' Sometimes we had to think a little more to figure out the cause and effect.
The cause in this case is just my body being worn out. On September 3, I took a flight home to Albany, NY (Albany isn't home, but that's where the airport is). It was my niece Sydney's 3rd birthday weekend, and we had a lot to do. In the many years I have lived apart from my family, we have gotten very good at taking a short amount of time and getting a lot done. I will frequently take a long weekend and go home for three or four days. There is always so much to do, that I'm usually running from the time I get off the airplane. And this time was no different. I got in around 1pm, so it was off to get lunch. Then it was off to see my aunt's new apartment, home for a little bit to play with Syd, and then pizza at our pizza joint- Kay's. We were there for a couple hours, eating this big feast of appetizers and pizza, and chatting with my cousin Beth & her boyfriend Pete. Friday we spent the morning in Bennington, on the Moose Hunt 2009, then we drove to the Schaticoke Fair and spent a couple hours there. I ended up carrying Syd quite a bit, which didn't seem to bother me at the time. But I think it was building up a 'cause'. We ended the day after dropping Syd off at home and going for dinner to Lou A Hale (never really sure how you spell it). I felt like I spent a good part of the day in the car. Saturday was Syd's birthday. We started at the mall, then went to the playland (Hoffman's), and then back to my sisters' house for the family party in the evening. I helped my mom decorate the birthday cake- my job was to mix the colors for the icing. Sunday mom had a wonderful picnic. I was able to play with Syd a lot this weekend, and that was good. Since my aunt was also staying with my mom, I was sleeping in a twin bed. A bit of a change from my queen bed at home. But it was a good weekend. I had some pain issues, mostly in the morning, but the pain I can work through most of the time. Fortunately my energy levels stayed high, allowing me to keep up with Sydney.
Sometimes it feels like my life is a series of trade offs. If I overdo it one day, I know that soon my body will pay for it. So I knew that pushing myself on my vacation would eventually catch up to me,but I get to see my family so infrequently that I always figure I can take whatever fibro dishes out. If I can just get through the vacation without a bad day, then I'll take the bad day when I get back to my normal life. So like I said, my pain levels had been increasing over the past few days. I had a massage on Saturday and it didn't even feel like it did any good. Last night I got home and my back just started spasming. So when I woke up this morning and had tons of pain, I decided I needed to listen to my body. I called in sick to work, leaving my boss a message that my pain levels were too high. I don't know that he'll understand, but he has told me before I have to tell him when I'm in pain. I'm in pain every day, so I don't let on to that, but I thought today I'd tell him that was why I wasn't coming in. I crawled back into bed, and slept all day. I woke up off and on, but pretty much slept until 4pm. Hmm. that was unusual- normally if I rest for a couple of hours I'm able to get up and moving.
Once I got up, we started thinking about dinner. Erich didn't want tacos, which is what I had planned. He offered to go get something, so we decided on Olive Garden. And then when I was trying to give him my order, I started feeling bleah. That's the only way I could describe it. Nothing appealed to me, I couldn't have cared if I ate or not but knew I needed to eat, since I hadn't eaten all day. After dinner I started getting so sick, and so cold. That's when it hit me, maybe it wasn't a bad fibro day after all. Maybe I've got the flu. Most people are able to tell when they are getting the flu because they feel achy all over. That feeling- that achy feeling where everything hurts, I have that all the time. That's fibro. Last night as I tried to sleep, I realized that even the feel of the blanket and sheets on my skin hurt. Physically hurt. So with fibro, I don't know from the aches that I'm getting the flu. And even when I start getting the stomach problems, at first I thought maybe it was my IBS acting up. It was only when the pain in my stomach was persistent, and overall I felt 'bleah', and was so cold that I couldn't get enough layers of clothing on did I start to wonder if it's the flu.
And then the news is talking about H1N1, and how people with underlying health issues are more vulnerable, then I wonder 'is it the regular flu? Is it H1N1? Is Fibro an 'underlying health issue'. So I will go to bed tonight, try to get a good night's sleep, and hopefully will be able to go to work in the morning. And try not to worry about all of this.
Wednesday, September 16, 2009
Thursday, August 20, 2009
I'd Like to Cancel this Subscription, Please
My friend Judy says she belongs to the 'Disease of the Month Club'. Judy has fibro as well, and sometimes when it is causing a lot of problems, she says she got her delivery as well as someone else's. I have felt that way this week.
Monday on my way home from work, I tried to take a deep breath and felt this stabbing pain in my lower back. Every time I tried to breathe, I felt this pain. It kept getting worse. By Monday night my entire back was tight. It has been humid this week, so I started having problems breathing from my allergies. So I didn't sleep well Monday night. I had to sleep propped up for my allergies, but that caused the pain in my back to get worse. Not getting enough sleep is never a good thing. It's like the green flag to the fibro to come and take over. Tuesday morning I felt like I was starting to get a migraine. What else could my body do to me? Well I shouldn't have asked that question. :) The fibro pain started making itself known in my fingers, in my toes, and in random spots in my legs. By lunchtime my stomach had joined the party, and overall I was feeling like I'd been hit by a truck, run over, and hit again. I thought of my friend Judy, and decided we could cancel this subscription anytime.
Yesterday my body was still pretty sore. It was a day that it hurts to wear clothes. People look at me funny when I say that. But it is true. The worst piece of clothing is the bra. All day long I felt like it was just squeezing my body, and kept thinking about how great it would feel to get home and get rid of it. I called and scheduled a massage for Saturday. I had a massage last weekend, and thought I could go two weeks before the next one. My therapist told me then that she was pretty sure she'd see me this weekend. She was right.
And this morning, was by far the most fun. The alarm went off and instantly I was aware of every ache in my body. I managed to get down the stairs to wash my face and then back up them to get a shower, but when I got out of the shower my body seemed ready to completely revolt against me. I raised my arm to brush my hair and didn't have the strength. So I sat down, but had this sharp pain in my hip and back. Finally I was able to get comfortable lying down on my bed. Ok, great, but I have to go to work, so I can't just lie here. I bit my lip to keep from crying as I struggled to get my legs into jeans. Cotton tshirt, oh I love cotton. And today, yet again, cotton hurts. I figured I would just throw a headband in my wet hair, even though when my hair dries I tend to look like this bizarre dutch girl- because the hair dries to about three times it's size. I gave myself a pep talk- lunchtime is only 4 1/2 hours away. If I can just get through to lunch, I could always come home for the afternoon. One foot in front of the other, slowly slowly I made my way to the stairs. I stood at the top of the stairs, and they seemed three times as long. It seemed an impossible task to get down them. I considered sitting down and scooting down the stairs on my behind, but figured that would take more energy. So I held onto both railings and hobbled down the stairs. Ok. Almost to the car! I was only walking like a woman 3 times my age- no problems. I get to work, manuever the several flights of stairs as best I can. I was fortunate no one was watching me. I shuffled to my office and collapsed in my big chair. By lunch time, I was moving like a woman just twice my age, so I knew we were doing better. I came home for lunch, and went back to work in the afternoon. Then it was downhill- I knew I could last until 4pm.
I was talking to a friend today, and she asked how my health was. I gave her the Readers Digest version, as I hate to come off as a complainer. She told me my outlook was so positive, and wondered how I manage to stay positive with the fibro. I try to keep sight of my blessings. I could throw myself a pity party, but that wouldn't help the pain. So I try to remember there are lots of people worse off than me. Yes, my condition is chronic and at times debilitating, but it's not terminal. And then I think of the good things. I have wonderful friends and family, my dogs provide a great source of comfort, and today at least- I focused on my vacation, which is 2 weeks away. So for today, there will be no pity party. I can't guarantee what tomorrow will bring though!
Monday on my way home from work, I tried to take a deep breath and felt this stabbing pain in my lower back. Every time I tried to breathe, I felt this pain. It kept getting worse. By Monday night my entire back was tight. It has been humid this week, so I started having problems breathing from my allergies. So I didn't sleep well Monday night. I had to sleep propped up for my allergies, but that caused the pain in my back to get worse. Not getting enough sleep is never a good thing. It's like the green flag to the fibro to come and take over. Tuesday morning I felt like I was starting to get a migraine. What else could my body do to me? Well I shouldn't have asked that question. :) The fibro pain started making itself known in my fingers, in my toes, and in random spots in my legs. By lunchtime my stomach had joined the party, and overall I was feeling like I'd been hit by a truck, run over, and hit again. I thought of my friend Judy, and decided we could cancel this subscription anytime.
Yesterday my body was still pretty sore. It was a day that it hurts to wear clothes. People look at me funny when I say that. But it is true. The worst piece of clothing is the bra. All day long I felt like it was just squeezing my body, and kept thinking about how great it would feel to get home and get rid of it. I called and scheduled a massage for Saturday. I had a massage last weekend, and thought I could go two weeks before the next one. My therapist told me then that she was pretty sure she'd see me this weekend. She was right.
And this morning, was by far the most fun. The alarm went off and instantly I was aware of every ache in my body. I managed to get down the stairs to wash my face and then back up them to get a shower, but when I got out of the shower my body seemed ready to completely revolt against me. I raised my arm to brush my hair and didn't have the strength. So I sat down, but had this sharp pain in my hip and back. Finally I was able to get comfortable lying down on my bed. Ok, great, but I have to go to work, so I can't just lie here. I bit my lip to keep from crying as I struggled to get my legs into jeans. Cotton tshirt, oh I love cotton. And today, yet again, cotton hurts. I figured I would just throw a headband in my wet hair, even though when my hair dries I tend to look like this bizarre dutch girl- because the hair dries to about three times it's size. I gave myself a pep talk- lunchtime is only 4 1/2 hours away. If I can just get through to lunch, I could always come home for the afternoon. One foot in front of the other, slowly slowly I made my way to the stairs. I stood at the top of the stairs, and they seemed three times as long. It seemed an impossible task to get down them. I considered sitting down and scooting down the stairs on my behind, but figured that would take more energy. So I held onto both railings and hobbled down the stairs. Ok. Almost to the car! I was only walking like a woman 3 times my age- no problems. I get to work, manuever the several flights of stairs as best I can. I was fortunate no one was watching me. I shuffled to my office and collapsed in my big chair. By lunch time, I was moving like a woman just twice my age, so I knew we were doing better. I came home for lunch, and went back to work in the afternoon. Then it was downhill- I knew I could last until 4pm.
I was talking to a friend today, and she asked how my health was. I gave her the Readers Digest version, as I hate to come off as a complainer. She told me my outlook was so positive, and wondered how I manage to stay positive with the fibro. I try to keep sight of my blessings. I could throw myself a pity party, but that wouldn't help the pain. So I try to remember there are lots of people worse off than me. Yes, my condition is chronic and at times debilitating, but it's not terminal. And then I think of the good things. I have wonderful friends and family, my dogs provide a great source of comfort, and today at least- I focused on my vacation, which is 2 weeks away. So for today, there will be no pity party. I can't guarantee what tomorrow will bring though!
Monday, July 27, 2009
The First One
In March, 2006 I was diagnosed with Fibromyalgia. The diagnosis followed several years of countless doctors visits, trying to find out why I felt so terrible. I was in my late 20s, but had the energy, or lack of energy, of a woman four times my age. I was always tired, and had pain throughout my body. I felt like I always had the flu- achy. My grandmother's sister had MS. I remember mom telling us about her. Aunt Vivian died just before mom & dad got married. Also on mom's side of the family, but on her father's side, mom's cousin has MS. I had CT scans, MRIs, blood work; more tests than I can remember. I had the doctors test me for MS as they checked for everything else. And yet no answers. I kept finding myself sitting in doctor's offices- looking at doctors who seemed to think I was a hypochondriac. All the tests they ran showed nothing- on the charts I looked like healthy person. But I knew that how I was feeling was NOT how a healthy woman in her late 20s should be feeling. A dear friend told me that what I was going through sounded like her own ideal, and suggested I talk to my doctor about the possibility of fibromyalgia. I was tired of doctors looking at me with 'that look'. So I did my research. I read a lot about fibromyalgia. I printed an article describing the tender points, the fatigue, etc. I took a highlighter and highlighted the parts of the article that applied to me. When I finished, I had most of the article highlighted. I took this to my neurologist. We talked about the article, and about how I felt. Then he did the tender points test-and the pain was so bad it just about brought me off the table. I had to keep myself from kicking him and screaming out.
Finally! A diagnosis! But having done my research, I knew what a double edged sword that was. Yes- now we knew what was wrong. But there is no cure. It is also something I will live with for the rest of my life. I was 3 months shy of my 30th birthday at the time of my diagnosis. And there are times the diagnosis feels like a life sentence. Our family has long lives- mom's parents lived to be 84 and 91. Knowing at 30 that I would live with this for the rest of my life was a lot to deal with. And there are times that I think maybe I'm a lucky one- maybe I will live long enough to see medicine make advances with this chronic and crippling illness.
In the three years since my diagnosis, I have learned how to maintain. How to maintain and not do too much at once- or I risk higher pain levels. But doing too little causes the pain to rise up too. It is like walking on a tightrope- one mis-step in either direction can cause me to spiral. I was always fiercely independent, and for me, learning to say 'no' has been the hardest part. My mother was superwoman- or at least it seemed that way. She worked full time out of the home, always had a home cooked meal on the table, took care of my sister and I and our dad, and kept the house spotless. I don't have children, I have dogs. And I can't keep up with her. It has taken me a while to realize it's ok if the house is dusty. I have had to say no to things I would like to do. Instead of running around shopping all weekend, I might just have to kick back at home. It has been an adjustment.
This blog is really for my benefit. On the very worst days, I find it helps to get my feelings out. Perhaps it will help on the best days too. So this is for me. It is my journey, as I deal with this luggage called Fibromyalgia.
Finally! A diagnosis! But having done my research, I knew what a double edged sword that was. Yes- now we knew what was wrong. But there is no cure. It is also something I will live with for the rest of my life. I was 3 months shy of my 30th birthday at the time of my diagnosis. And there are times the diagnosis feels like a life sentence. Our family has long lives- mom's parents lived to be 84 and 91. Knowing at 30 that I would live with this for the rest of my life was a lot to deal with. And there are times that I think maybe I'm a lucky one- maybe I will live long enough to see medicine make advances with this chronic and crippling illness.
In the three years since my diagnosis, I have learned how to maintain. How to maintain and not do too much at once- or I risk higher pain levels. But doing too little causes the pain to rise up too. It is like walking on a tightrope- one mis-step in either direction can cause me to spiral. I was always fiercely independent, and for me, learning to say 'no' has been the hardest part. My mother was superwoman- or at least it seemed that way. She worked full time out of the home, always had a home cooked meal on the table, took care of my sister and I and our dad, and kept the house spotless. I don't have children, I have dogs. And I can't keep up with her. It has taken me a while to realize it's ok if the house is dusty. I have had to say no to things I would like to do. Instead of running around shopping all weekend, I might just have to kick back at home. It has been an adjustment.
This blog is really for my benefit. On the very worst days, I find it helps to get my feelings out. Perhaps it will help on the best days too. So this is for me. It is my journey, as I deal with this luggage called Fibromyalgia.
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