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Showing posts with label exhaustion. Show all posts
Showing posts with label exhaustion. Show all posts
Thursday, November 16, 2017
This is how I am feeling today. I haven’t been sleeping well this week. My #glucose numbers aren’t so great even though I am working super hard on controlling them with my diet. And I’ve been so alone throughout my whole pregnancy (well, with the exception of my three screaming meemies 😜). It’s very hard. I am having a difficult time getting excited about this baby. I know that in the end, I will love and adore her just as much as my other three. But with everything I’ve been going through, alone, it’s just.so.hard. Of course I know how this makes me sound. And I know how desperate other women are to have children, so there is enormous guilt associated with my admission and my feelings. And I really do believe she is a gift. I’m just being real. This is where I am at. Alone. Frightened. Worried. Sad. Angry. Exhausted. #truth #pregnancy #pregnant #advancedmaternalage #pregnantat41 #gestationaldiabetes #emotional #chronicandpregnant #fibroandpregnant #chronicillness #fibromyalgia #scleroderma #ibs #fml #depression #anxiety #blogpost #momlife #momoffour #canirunaway #wouldanyonemissme
Tuesday, April 18, 2017
The Ultimate Guide to Family Travel as a Spoonie
Here are my top 10 tips for family travel with fibromyalgia and other chronic illnesses:
If you are driving to your destination, there are several tips I have for you. I haven't flown anywhere since my illnesses emerge, so I can't speak to that just yet. But some of my tips are definitely useful for any type of travel, since I am sharing with you many of my tips for your time at your vacation spot!
1. Pack everything you will need for the trip AND the car the day before you travel. It's too much on your body to do all of the packing and preparing for the trip...and then drive/ride in the car for several hours all on the same day. If you can adjust your schedule to do so, plan the whole day beforehand as your packing day so that you can pack a little, rest a little, pack a little, rest a little.
2. Travel in the morning, if you are able to, so that you are only contending with your typical pain and fatigue, not your typical plus all-the-packing-getting-ready-managing-kids-pain-and-fatigue. You will most likely still feel additional pain and fatigue from packing the day before, but you will be better off with having some sleep in between packing and traveling.
3. Hopefully you will be traveling with another adult companion, be it your spouse/significant other, family member, or friend. You need someone to go with you that will be able to do at least half, if not the bulk of the driving. Traveling in the car tends to be uncomfortable for Spoonies, whether driving or resting in the passenger's seat. But the additional mental and physical energy it requires to drive long distances can be even more fatiguing and you don't want to wear yourself out before you even arrive at your destination!
4. Try to make frequent rest stops to use the bathroom, grab a bite to eat, and stretch your body out. But keep them as short as possible. You need to have the break from sitting, but the longer it takes you to reach your destination, the more fatigued you will be. Of course, with kids in tow, frequent stopping is completely typical anyway, so take advantage of the kids' needs to meet your own, as well. If you're like me and have IBS, too, that can mean more frequent stops, as well. It can also mean that you may run into a situation where you need a rest area immediately, but there isn't one in sight. Many times in the past, we have scooted off the highway to the nearest gas station, store, or fast food joint. Just like for the kids, make sure you always have a package of wipes, plastic bags, and an extra outfit packed in your car that is easily accessible...just in case.
5. Try to schedule your trip so that you are not in a rush to get to your destination. Even though the goal is to arrive in as little time as possible (limiting your sitting time), if you add the pressure and stress of a scheduled arrival time, it will increase your fatigue and pain. So if you can, just go with the flow and try to enjoy the downtime with the family!
6. But also make sure you have activities for the children to do! That's typically a mom no-brainer. But when you have a chronic illness, the noise from the children being in such close proximity to your ears could make you extremely irritable. You MUST prepare for them to be occupied if this is a possible outcome for you on your trip. The point of traveling with your family is to have fun together and spend quality time together, not for the kids to be driving you nuts so much that you end up on the brink of insanity, screaming at them to JUSTBEQUIET because it truly hurts your ears due to their highly sensitive nature. Oh, and also--the Quiet Game almost always works! Whenever I say those magical words, "One, two, three, four, Quiet Game!" I am guaranteed at least a couple of minutes of no whining, complaining, shouting, squealing...you get it! So use it whenever you need to!
7. Once you arrive at your destination and settle into your room, take at least a 20-30 minute rest. If there is still time left in the day to do any sight-seeing or fun activities, you will need to recuperate as much as you can from the drive. Of course, since we are often fatigued no matter how much rest we do get, you will most likely still feel it when you are up and moving about again, but that little bit of a rest could mean the difference between enjoying your family and wanting to cringe every time they speak. (It ain't easy being a spooned!)
8. Throughout your trip, plan times that you will be back in the hotel for downtime if you can. The kids need the rest as much as you do (even if they don't want to admit it!). I can't always get a nap in when we travel, but I have to have rest time planned into each day. Sometimes that might mean just sitting down on a bench at a park or attraction for 15-20 minutes several times throughout the day if it's not feasible to go back to our room. But life has changed since being diagnosed with my illnesses, and in order for me to last throughout the day, our pace for sight-seeing is no longer break-neck. It might mean that we cannot do everything we'd like to do at our destination, but that's okay. The point is to enjoy your family, experience new things together, and see the world. That doesn't mean that you have to kill yourself doing it! You will be of no use to your family when you return home if you completely overdo it while you're away.
9. The kids are probably going to want to take in all of the sights and activities that are energy-consuming for you. But that doesn't mean you cannot choose an activity or two that is less physically-exhausting. I find that when I plan activities for the children that are lower-key, mixed in with the exciting, all-consuming, physically-draining ones, it makes it less exhausting for them, too. And they appreciate those moments just as much, when we are sitting in a park watching the squirrels, or next to the ocean/a lake/a stream breathing in the smells and relaxing to the sounds of the water. Just as kids need to learn how to be "unplugged" from electronics, they also need to learn to just "be"...in nature, in the moment, with us, in our world...without the "whatarewedoingnext" mentality we've come to know and expect in our culture today.
10. If you are able to, I highly recommend scheduling at least one down day right after you return from your trip. Don't make any major plans to do ANYTHING! And if you can, try to enlist the support of family or friends to help with the kids that first day you return home. You will most likely need to rest quite a bit and the vacation laundry may have to wait a day or two, but it will all get done eventually.
If I think of more tips, I will come back to this post and edit it to include them, but for now, that's all, folks! Do any of you have tips you could add to the list? Please share them in the comments below!
Exhaustedly yours,
Marathon Momma
Sunday, March 29, 2015
The Bus Stops Here
I was driving by a bus stop today and started thinking to myself...I could park my car in the parking lot........get on the bus........and go somewhere....Forever. I could leave behind this life that, at the moment (a very long moment), I feel like I merely........exist.........in.
I actually started plotting out my escape as I was driving further down the road. I could get on one bus, take it somewhere, anywhere. Then, transfer to another one, and make my way down to Tennessee to visit my brother, whom I have not seen in 3 years. From there, I would go down even further south, like Florida, perhaps...where it's warmer and the cold and damp wouldn't hurt my body so much. Of course, it is damp there, though. Or maybe I could head over to California. I would love to go back to San Diego sometime! I could travel. Alone. Without anybody. I've done it before. I could do it again. I don't need anything. There are soooooo many places I could go! And there would be so much freedom! And...quiet. Ahhh, yes! Quiet.
But I've never been a quitter. One of my favorite songs has always been Simon and Garfunkel's, "The Boxer." There's a line in it that says, "In the clearing stands a boxer, and a fighter by his trade. And he carries a reminder of every club that laid him down or cut him till he cried out, in his anger and his shame, 'I am leaving, I am leaving,' but the fighter still remains." I had wanted that to be my yearbook quote when I was a senior in high school, because that was, and is me. Even despite it all, and despite any complaining, I always stick it out, push through it, and fight for what I believe is right. Unfortunately, that quote that was so near and dear to me was too long to fit in the eensy weensy space below my photograph in the yearbook, so I couldn't use it. I ended up choosing another line from a different song, by the way...this time by the Beatles. "Here comes the sun."
Life has never been easy for me. I grew up in a broken home, emotionally abused, physically abused, neglected. I overcame obstacles that were insurmountable. I went to college, graduated with honors; then went on to graduate school and got my Masters...with a 3.9 GPA. I made something of myself. I followed all the rules. I did everything I was supposed to. And I never, ever quit. I always took a difficult situation as a challenge...and overcame it. But I never, no never quit. So I will not quit now. But damn, it sure sounds easier! And where did all this goody-two-shoeing get me in the end? I've got this horrible illness that nobody understands, some people don't believe, and it is debilitating. I can't work. I can't use my degree that I worked so hard for (and am still paying on). I don't get to enjoy the career I longed for and loved. I don't get to really and truly live life and enjoy it. I feel like I've been robbed of the life and future I worked so hard to earn. And I feel like my children are being robbed of the mother they deserve.
Maybe instead of being a rule-follower, from now on I should be a rule-breaker? Hmmm....thinking...thinking...
Wondering if I really could rebel,
Marathon Momma
P.S. Just in case I do end up a "missing person," please don't tell 'em where I am! ;)
P.P.S. It is also true that I wouldn't make it very far in my travels with this crappy body that I have now.
I actually started plotting out my escape as I was driving further down the road. I could get on one bus, take it somewhere, anywhere. Then, transfer to another one, and make my way down to Tennessee to visit my brother, whom I have not seen in 3 years. From there, I would go down even further south, like Florida, perhaps...where it's warmer and the cold and damp wouldn't hurt my body so much. Of course, it is damp there, though. Or maybe I could head over to California. I would love to go back to San Diego sometime! I could travel. Alone. Without anybody. I've done it before. I could do it again. I don't need anything. There are soooooo many places I could go! And there would be so much freedom! And...quiet. Ahhh, yes! Quiet.
But I've never been a quitter. One of my favorite songs has always been Simon and Garfunkel's, "The Boxer." There's a line in it that says, "In the clearing stands a boxer, and a fighter by his trade. And he carries a reminder of every club that laid him down or cut him till he cried out, in his anger and his shame, 'I am leaving, I am leaving,' but the fighter still remains." I had wanted that to be my yearbook quote when I was a senior in high school, because that was, and is me. Even despite it all, and despite any complaining, I always stick it out, push through it, and fight for what I believe is right. Unfortunately, that quote that was so near and dear to me was too long to fit in the eensy weensy space below my photograph in the yearbook, so I couldn't use it. I ended up choosing another line from a different song, by the way...this time by the Beatles. "Here comes the sun."
Life has never been easy for me. I grew up in a broken home, emotionally abused, physically abused, neglected. I overcame obstacles that were insurmountable. I went to college, graduated with honors; then went on to graduate school and got my Masters...with a 3.9 GPA. I made something of myself. I followed all the rules. I did everything I was supposed to. And I never, ever quit. I always took a difficult situation as a challenge...and overcame it. But I never, no never quit. So I will not quit now. But damn, it sure sounds easier! And where did all this goody-two-shoeing get me in the end? I've got this horrible illness that nobody understands, some people don't believe, and it is debilitating. I can't work. I can't use my degree that I worked so hard for (and am still paying on). I don't get to enjoy the career I longed for and loved. I don't get to really and truly live life and enjoy it. I feel like I've been robbed of the life and future I worked so hard to earn. And I feel like my children are being robbed of the mother they deserve.
Maybe instead of being a rule-follower, from now on I should be a rule-breaker? Hmmm....thinking...thinking...
Wondering if I really could rebel,
Marathon Momma
P.S. Just in case I do end up a "missing person," please don't tell 'em where I am! ;)
P.P.S. It is also true that I wouldn't make it very far in my travels with this crappy body that I have now.
Tuesday, July 8, 2014
Paperwork and Other Things
If you don't want to read my wallowing in self-pity, then skip over this post. Because the reality is that today is a bad day. Actually, if I am being honest, it has been a difficult several months. I am constantly overwhelmed and exhausted. There never seems to be much of a break from the stress. Being a mom of a child with special needs is far more tiring than I would have ever expected. It is all-encompassing, from the physical to the mental to the emotional. And that doesn't even take into account my other two lovely cherubs. And, unfortunately, I am not super human. I do not have the time, strength, and energy all the time to do everything that needs to be done for Miracle Man, immediately when it is required. I try to do my best each day and tackle several different tasks beyond the daily cooking, cleaning, caring for the children. But I am only human. And there are only so many hours in a day. And I only have so much strength and energy.
Miracle Man has been going through a lot of medical testing. Too much to blog about individually. I just don't have the time to go back and write up quirky or sentimental posts about each of his experiences over the past few months. So I have decided that I am not going to try. This time in our lives is just too crazy busy.
In addition to all of the medical testing (still hoping for the answers that are difficult to come by), we just recently made the transition from Early Intervention to Preschool Special Education. I have to say that I am in shock at how involved it is to transition, and how many stacks of paperwork have to be completed. And, although he began in his new preschool program yesterday, there is STILL more paperwork to fill out. There is so much, I actually have to ration it out over the course of this coming week just to accomplish it. And I am the only person who can do it. But what if I don't want to fill out ANOTHER social history???? This is the third one in less than a month. And social histories are about a gazillion pages long...and they are not fill-in-the-blanks or multiple choice questions, people. They are essays. Pages and pages of essays. To tell everyone in the entire universe EVERYTHING there is to know about my sweet little guy. All of his medical history. All of the goals we wish to accomplish. All of our concerns about him (that one is an enormous list). All of his likes/dislikes/relationships/reactions to stimuli/waking times/sleep times/eye blinking times. Okay, so that last one is a bit of an exaggeration. But, really, that is how it feels. And to have to write it all over and over is "over" whelming. Naturally, I do it. And I complete it carefully and thoroughly. But I wonder why they can't just make it easier on parents of special needs kids. Parents who are already physically, mentally, and emotionally drained. Parents who are strapped for time, but still want the best for their child. You know, like why isn't there just one universal social history form that gets copied and passed around to each school and agency???? I don't know. Maybe I am just too intelligent for the system? Haha.
Mountains of paperwork. Always. That's the stage we are in. As if the transition paperwork weren't enough, we recently received a provisional qualification of disability from the state. Which means...guess what?!?! More paperwork. Yup. I could swim in a sea of paperwork and tasks right now. Just for Miracle Man. It is fabulous that we received this letter of qualification. Truly it is. It will help us access many different programs that are intended to make our lives somewhat easier. But there's the whole "red tape" thing that gets in the way a bit. Calling programs, filling out applications, researching the resources. It.is.all.too.much. I need a secretary. Heck, I need two secretaries! And it really is no joke. I am actually holding off on looking into all of those programs until the preschool transition is completed and the last bit of paperwork is handed in and off my desk!
And then there is the emotional toll of transitioning to preschool. Spending a year, or two years, or more working with therapists who come into your home to help and love your child is wonderful. It is a connection that you make that feels like family. The therapists help you and your child with their whole being . And you come to rely on their expertise in making decisions for your child. But more importantly, you begin to rely on their friendship and the sense that you are "in this together". And then, 2 years later, your child transitions to preschool, and BAM! No more. The connections, the extended "family" you have made together are severed. Maybe not so drastically or completely (gotta love Facebook for that). But still. It will not be the same. It is unnerving. It is sad. It is hard.
Aside from Miracle Man's Mount Everest of paperwork, I have just enrolled Chub-Chub in a nursery school program for two days a week. This means even more paperwork. Having Chub-Chub attend nursery school will be so great for him. He will get to play with other children. He will learn. He will experience new things and new people. And he will be at Miracle Man's school, too! They are in separate programs and classrooms, but they will get to see each other on the playground, which is something I am very pleased about. Yesterday, I was told that Chub-Chub went right over to Miracle Man and gave him a hug and rubbed his head. So sweet! Of course, we are currently going through a very rough bout of separation anxiety on Chub-Chub's part. And yesterday's drop-off at nursery school was no walk in the park. It was more like a frantic sprint in a dark alley with a gang of thugs following closely behind. But, Chub-Chub being in school will help me out. I will eventually get a much-needed break from my lovely kiddles, once everyone settles in and I have crossed all t's and dotted all i's. And maybe I will even find some "me" time. For now, though, it's a transition. And more...paperwork.
Then there is me. Somehow I fit into this equation, too, right?! And right now I am going through some very difficult decisions and transitions. My health has taken a turn for the worse. I struggle daily with the pain and the fatigue of fibro, but lately, because of where my pain is and the intensity of it, my doc believes that my scleroderma may be progressing. She also gave me the results of my most recent pulmonary function test and there is decreased functioning in my lungs. She is tweaking my meds and therapies and we are hoping for the best. But she is also keeping me out of work longer. For at least a year. And I am struggling with coming to grips with that. I don't know when or if I will be able to go back to work. I miss it terribly. I miss the students. I miss having my own group of sweet children to educate and nurture. I miss studying fun topics with the kids, and going into more depth because they are fascinated by what we are learning about. I miss being silly and having fun with the children. I miss my colleagues. I miss being part of the building; the camaraderie, the support. And now I have also been told that my job has been moved to a different building. Which means that I will most likely never again work with the people I knew and cared about. And I will have to clean out my classroom. It feels final. Even if it isn't. It feels that way. All of the hard work and effort I put into my education and my classroom has to continue to be put on hold. And that is very sad. And scary.
I know there is a light at the end of the tunnel. And I can sort of see it up ahead in the distance. But the tunnel is dark. And long. And I am crawling through it. One knee at a time. Right now, I am feeling very emotional and fragile. And I am relying on anybody and everybody who offers kind words or actions of support. It is what feeds my soul and helps me keep going, even if just for another minute. Respectfully, I am not looking for any advice on how to handle any of this, no matter how well-intentioned it is. I can and will figure it all out. I just needed to vent...and I did warn you ahead of time. I am having a low point and it is a bad day. :(
Sorry to be a downer,
Marathon Momma
Miracle Man has been going through a lot of medical testing. Too much to blog about individually. I just don't have the time to go back and write up quirky or sentimental posts about each of his experiences over the past few months. So I have decided that I am not going to try. This time in our lives is just too crazy busy.
In addition to all of the medical testing (still hoping for the answers that are difficult to come by), we just recently made the transition from Early Intervention to Preschool Special Education. I have to say that I am in shock at how involved it is to transition, and how many stacks of paperwork have to be completed. And, although he began in his new preschool program yesterday, there is STILL more paperwork to fill out. There is so much, I actually have to ration it out over the course of this coming week just to accomplish it. And I am the only person who can do it. But what if I don't want to fill out ANOTHER social history???? This is the third one in less than a month. And social histories are about a gazillion pages long...and they are not fill-in-the-blanks or multiple choice questions, people. They are essays. Pages and pages of essays. To tell everyone in the entire universe EVERYTHING there is to know about my sweet little guy. All of his medical history. All of the goals we wish to accomplish. All of our concerns about him (that one is an enormous list). All of his likes/dislikes/relationships/reactions to stimuli/waking times/sleep times/eye blinking times. Okay, so that last one is a bit of an exaggeration. But, really, that is how it feels. And to have to write it all over and over is "over" whelming. Naturally, I do it. And I complete it carefully and thoroughly. But I wonder why they can't just make it easier on parents of special needs kids. Parents who are already physically, mentally, and emotionally drained. Parents who are strapped for time, but still want the best for their child. You know, like why isn't there just one universal social history form that gets copied and passed around to each school and agency???? I don't know. Maybe I am just too intelligent for the system? Haha.
Mountains of paperwork. Always. That's the stage we are in. As if the transition paperwork weren't enough, we recently received a provisional qualification of disability from the state. Which means...guess what?!?! More paperwork. Yup. I could swim in a sea of paperwork and tasks right now. Just for Miracle Man. It is fabulous that we received this letter of qualification. Truly it is. It will help us access many different programs that are intended to make our lives somewhat easier. But there's the whole "red tape" thing that gets in the way a bit. Calling programs, filling out applications, researching the resources. It.is.all.too.much. I need a secretary. Heck, I need two secretaries! And it really is no joke. I am actually holding off on looking into all of those programs until the preschool transition is completed and the last bit of paperwork is handed in and off my desk!
And then there is the emotional toll of transitioning to preschool. Spending a year, or two years, or more working with therapists who come into your home to help and love your child is wonderful. It is a connection that you make that feels like family. The therapists help you and your child with their whole being . And you come to rely on their expertise in making decisions for your child. But more importantly, you begin to rely on their friendship and the sense that you are "in this together". And then, 2 years later, your child transitions to preschool, and BAM! No more. The connections, the extended "family" you have made together are severed. Maybe not so drastically or completely (gotta love Facebook for that). But still. It will not be the same. It is unnerving. It is sad. It is hard.
Aside from Miracle Man's Mount Everest of paperwork, I have just enrolled Chub-Chub in a nursery school program for two days a week. This means even more paperwork. Having Chub-Chub attend nursery school will be so great for him. He will get to play with other children. He will learn. He will experience new things and new people. And he will be at Miracle Man's school, too! They are in separate programs and classrooms, but they will get to see each other on the playground, which is something I am very pleased about. Yesterday, I was told that Chub-Chub went right over to Miracle Man and gave him a hug and rubbed his head. So sweet! Of course, we are currently going through a very rough bout of separation anxiety on Chub-Chub's part. And yesterday's drop-off at nursery school was no walk in the park. It was more like a frantic sprint in a dark alley with a gang of thugs following closely behind. But, Chub-Chub being in school will help me out. I will eventually get a much-needed break from my lovely kiddles, once everyone settles in and I have crossed all t's and dotted all i's. And maybe I will even find some "me" time. For now, though, it's a transition. And more...paperwork.
Then there is me. Somehow I fit into this equation, too, right?! And right now I am going through some very difficult decisions and transitions. My health has taken a turn for the worse. I struggle daily with the pain and the fatigue of fibro, but lately, because of where my pain is and the intensity of it, my doc believes that my scleroderma may be progressing. She also gave me the results of my most recent pulmonary function test and there is decreased functioning in my lungs. She is tweaking my meds and therapies and we are hoping for the best. But she is also keeping me out of work longer. For at least a year. And I am struggling with coming to grips with that. I don't know when or if I will be able to go back to work. I miss it terribly. I miss the students. I miss having my own group of sweet children to educate and nurture. I miss studying fun topics with the kids, and going into more depth because they are fascinated by what we are learning about. I miss being silly and having fun with the children. I miss my colleagues. I miss being part of the building; the camaraderie, the support. And now I have also been told that my job has been moved to a different building. Which means that I will most likely never again work with the people I knew and cared about. And I will have to clean out my classroom. It feels final. Even if it isn't. It feels that way. All of the hard work and effort I put into my education and my classroom has to continue to be put on hold. And that is very sad. And scary.
I know there is a light at the end of the tunnel. And I can sort of see it up ahead in the distance. But the tunnel is dark. And long. And I am crawling through it. One knee at a time. Right now, I am feeling very emotional and fragile. And I am relying on anybody and everybody who offers kind words or actions of support. It is what feeds my soul and helps me keep going, even if just for another minute. Respectfully, I am not looking for any advice on how to handle any of this, no matter how well-intentioned it is. I can and will figure it all out. I just needed to vent...and I did warn you ahead of time. I am having a low point and it is a bad day. :(
Sorry to be a downer,
Marathon Momma
Wednesday, November 20, 2013
My Own Pity Party
I promise I won't do this very often...but today I need to. I just have some feelings that I feel I need to share. And, let's be honest...about this whole blogging thing...it really is for me , isn't it? LOL I mean, of course there are all the things I hope to accomplish through blogging, like helping other people in similar situations, at the very least, feel like they are not alone. And maybe, just maybe, becoming an inspiration to someone who is just beginning the process (you know, later on down the road). Ultimately, though, blogging about my life really is a chance for me to express myself, right? I have just one caveat before I go ahead and jump on in with both feet...you should know that I am Very Grateful that my symptoms are not nearly as bad as they could be. I know that there are many more people in the world who are less fortunate than me. I can only hope that my disease doesn't progress to the levels that I have seen it could eventually be. But in the meantime, I am thankful that, despite all of my issues, it is not worse.
So, here's your very last chance to bail on reading this post if you aren't up for listening to a lot of whining and complaining...it's just something I really need to do right now...have a little pity party for myself so that I can get the whining out of my system and focus more on what I need to do to stay as healthy as I can for my family. So, if you keep on reading, don't say I didn't warn you!
How about I start this off as a top 10 list of my most annoying symptoms? That's sounds good to me ...
1. I am soooooo tired. All.The.Time! Like sleepy tired...you know that feeling when your eyes start to sting because you're super tired? That's how I feel. Always. Even if I get a good night's sleep, or nap, or rest. I am tired...and not like mom tired. Just through and through tired.
2. I'm exhausted. I know that sounds an awful lot like number one, but I am referring to a different kind of tiredness now...the one that exists deep in my muscles. It sorta feels like I have spent hours at the gym lifting very heavy weights...and a lot of times there is a soreness there, too, as if I really did lift weights! Thank goodness the boys can walk a lot now, because the exhaustion in my muscles makes it very difficult to carry them much at all anymore. But this exhaustion effects absolutely everything I do throughout my entire day. So if anyone I know sees me and thinks I look miserable, it's probably just that I'm tired and exhausted...please don't take it personally! ;)
3. I ache. Like bone ache. My hands, my right pinky finger, my wrists, my arms, my right elbow, my legs, my knees, my hips, my neck, my back, and I am sure some other part of me that I am forgetting. I feel like I am 80 years old! Can somebody hand me my walker, please?? Now, I do feel a little better once my body gets up and moving, like after a little exercise or something...but then I am tired and exhausted again. I am really going to have to learn to find balance in my life to help with this.
4. My stomach is a mess. I often feel like I am going to spew chunks (sorry to any of my visual friends, followers). And if it's not coming out one end, it's the other! Again, I apologize. But it's real . Too, I am frequently gassy, bloated, and/or constipated, just to tie it all up in a neat little package...with a giant purple bow (because that's my favorite)! But, pretty much, my stomach rarely feels "right" anymore.
5. My hands and feet are frozen icicles hanging off logs. And it is sooooooo hard to warm them up if they get cold! I have to be very proactive with this one! Because once they're cold, forget it ! I might as well stick them in an ice bath and tell them that misery loves company!
6. I am having a hard time swallowing. This is one of the weird symptoms I was vaguely aware that I was experiencing, but I didn't realize it was actually a symptom of anything , until the doc told me about it. And now that I am paying more attention to it, it is a bit annoying.
7. Another one: I have difficulty taking deep breaths. It hurts my lungs. I was aware of this symptom before seeing the scleroderma specialist, but as with the swallowing, I had no idea that it was connected. I just assumed it was because I was out of shape. But now, I am worried about it. I am anxious to go for my pulmonary function test next week to see if I have any scar tissue on my lungs. *Wish me luck*!
8. Acid reflux...something I have only had a few times in my life...except when I was preggo with those beautiful boys of mine! While I was pregnant with the twins, I had the worst heartburn of my life! And when it continued post-delivery, I was sure it had something to do with the pregnancy hormones still hanging around in my body?!?! I guess not! Fortunately, I don't have it very often...but I have had it in the middle of the night, to the point of vomiting, and that stinks !
9. Swollen glands and low-grade fevers are pretty much a weekly occurrence. What a pain in the neck! Literally! LOL
10. My skin is itchy. With scleroderma, you usually get patches of thicker, itchy skin on different parts of your body. And so far, I am very fortunate, in that I have very few of these patches. However, my skin is frequently itchy all over...and that makes me start thinking of chicken pox...and head lice...and scabies...and other creepy, itchy things, and it makes me even more itchy!
Okay, that's a pretty big laundry list of my physical complaints. Just a few more complaints...but these are more of an emotional nature. I think I'd like to do another list...but let's stick to, let's say, maybe my top five complaints for this one. That way I don't bore you to death with my whining.
1. I am frustrated that I have to now deal with my own health issues. I have all I can handle, trying to deal with Miracle Man's health/learning concerns and raising my other 2 children, plus taking care of the dog, the cats, the house, my husband, etc. I don't have the time to be dealing with my own health issues. And I don't feel like running to doctor's appointments for myself, on top of all of the appointments for Miracle Man and my other two lovelies. I don't wanna do it and you can't make me! (Ooops, sorry...flashback from childhood!)
2. I don't want this to be my body now. I want to run. Marathons. Many, many Marathons. I wanted to be able to run one in every state by the time I eventually retired from running. I even wanted to run a few internationally. And I don't want to feel like I am 80 years old when I have so much life left and so much to experience as a mom. I don't want to feel like a slug at all. I want to play hardcore with my kiddles. Was this an invasion of the body snatchers?
3. Even though this diagnosis is all so new to me, I already feel so alone in this disease. I don't know anybody with scleroderma. And whenever you tell someone that you have something that they cannot visually see, they often don't "get it". It makes me feel...so.very.isolated...already . Nobody seems to understand. Even though people are caring and compassionate, they still don't really get it, because they haven't experienced it. I feel like some people think I am just whiny and that I should just "suck it up", but it's not simply a matter of just "sucking it up". I wish it were that simple. I wish I could just "make up my mind" to feel better . That would make EVERYTHING so much easier!
4. I find myself to be...annoying. That's strange, isn't it? But it's true . Sometimes, I just get so cranky and miserable and I am totally annoyed with myself for it, but I have a hard time changing my mood. I have found, though, that if I can be silly with the kids, or listen to some music, it sometimes helps. Just not always . And I don't want to be stuck in those kinds of moods.
5. Sitting/resting makes me feel lazy. I don't like it. I never have. I have always been on-the-go...since...ummmm...forever . I think that's why I am enjoying blogging so very much lately. Because it makes me feel like I am actually accomplishing something (other than keeping the couch warm), in between taking care of the kids. And it bugs.the.heck.out.of.me to think that other people might think that I am just being lazy. I mean, it really drives me BoNkErS! And it shouldn't matter what other people think. But we live in a work, work, work culture, and I know I have a hard time with it, just for myself. So, I am sure there are many people who already think this or will think this of me. And that feels terrible to me.
Well, that's it. For now. As I said above, I promise I won't do this often. I am glad I was able to get this off my chest. And I am going to work hard to stay positive and focus on maintaining my health and taking care of my family as best I can. Thank you to those of you who actually read this post all the way down to here!
That's all folks,
MM
P.S. Feel free to leave a comment for me below...just be gentle, please. I'm feeling a little bit fragile emotionally right now. Thanks! ;)
So, here's your very last chance to bail on reading this post if you aren't up for listening to a lot of whining and complaining...it's just something I really need to do right now...have a little pity party for myself so that I can get the whining out of my system and focus more on what I need to do to stay as healthy as I can for my family. So, if you keep on reading, don't say I didn't warn you!
How about I start this off as a top 10 list of my most annoying symptoms? That's sounds good to me ...
1. I am soooooo tired. All.The.Time! Like sleepy tired...you know that feeling when your eyes start to sting because you're super tired? That's how I feel. Always. Even if I get a good night's sleep, or nap, or rest. I am tired...and not like mom tired. Just through and through tired.
2. I'm exhausted. I know that sounds an awful lot like number one, but I am referring to a different kind of tiredness now...the one that exists deep in my muscles. It sorta feels like I have spent hours at the gym lifting very heavy weights...and a lot of times there is a soreness there, too, as if I really did lift weights! Thank goodness the boys can walk a lot now, because the exhaustion in my muscles makes it very difficult to carry them much at all anymore. But this exhaustion effects absolutely everything I do throughout my entire day. So if anyone I know sees me and thinks I look miserable, it's probably just that I'm tired and exhausted...please don't take it personally! ;)
3. I ache. Like bone ache. My hands, my right pinky finger, my wrists, my arms, my right elbow, my legs, my knees, my hips, my neck, my back, and I am sure some other part of me that I am forgetting. I feel like I am 80 years old! Can somebody hand me my walker, please?? Now, I do feel a little better once my body gets up and moving, like after a little exercise or something...but then I am tired and exhausted again. I am really going to have to learn to find balance in my life to help with this.
4. My stomach is a mess. I often feel like I am going to spew chunks (sorry to any of my visual friends, followers). And if it's not coming out one end, it's the other! Again, I apologize. But it's real . Too, I am frequently gassy, bloated, and/or constipated, just to tie it all up in a neat little package...with a giant purple bow (because that's my favorite)! But, pretty much, my stomach rarely feels "right" anymore.
5. My hands and feet are frozen icicles hanging off logs. And it is sooooooo hard to warm them up if they get cold! I have to be very proactive with this one! Because once they're cold, forget it ! I might as well stick them in an ice bath and tell them that misery loves company!
6. I am having a hard time swallowing. This is one of the weird symptoms I was vaguely aware that I was experiencing, but I didn't realize it was actually a symptom of anything , until the doc told me about it. And now that I am paying more attention to it, it is a bit annoying.
7. Another one: I have difficulty taking deep breaths. It hurts my lungs. I was aware of this symptom before seeing the scleroderma specialist, but as with the swallowing, I had no idea that it was connected. I just assumed it was because I was out of shape. But now, I am worried about it. I am anxious to go for my pulmonary function test next week to see if I have any scar tissue on my lungs. *Wish me luck*!
8. Acid reflux...something I have only had a few times in my life...except when I was preggo with those beautiful boys of mine! While I was pregnant with the twins, I had the worst heartburn of my life! And when it continued post-delivery, I was sure it had something to do with the pregnancy hormones still hanging around in my body?!?! I guess not! Fortunately, I don't have it very often...but I have had it in the middle of the night, to the point of vomiting, and that stinks !
9. Swollen glands and low-grade fevers are pretty much a weekly occurrence. What a pain in the neck! Literally! LOL
10. My skin is itchy. With scleroderma, you usually get patches of thicker, itchy skin on different parts of your body. And so far, I am very fortunate, in that I have very few of these patches. However, my skin is frequently itchy all over...and that makes me start thinking of chicken pox...and head lice...and scabies...and other creepy, itchy things, and it makes me even more itchy!
Okay, that's a pretty big laundry list of my physical complaints. Just a few more complaints...but these are more of an emotional nature. I think I'd like to do another list...but let's stick to, let's say, maybe my top five complaints for this one. That way I don't bore you to death with my whining.
1. I am frustrated that I have to now deal with my own health issues. I have all I can handle, trying to deal with Miracle Man's health/learning concerns and raising my other 2 children, plus taking care of the dog, the cats, the house, my husband, etc. I don't have the time to be dealing with my own health issues. And I don't feel like running to doctor's appointments for myself, on top of all of the appointments for Miracle Man and my other two lovelies. I don't wanna do it and you can't make me! (Ooops, sorry...flashback from childhood!)
2. I don't want this to be my body now. I want to run. Marathons. Many, many Marathons. I wanted to be able to run one in every state by the time I eventually retired from running. I even wanted to run a few internationally. And I don't want to feel like I am 80 years old when I have so much life left and so much to experience as a mom. I don't want to feel like a slug at all. I want to play hardcore with my kiddles. Was this an invasion of the body snatchers?
3. Even though this diagnosis is all so new to me, I already feel so alone in this disease. I don't know anybody with scleroderma. And whenever you tell someone that you have something that they cannot visually see, they often don't "get it". It makes me feel...so.very.isolated...already . Nobody seems to understand. Even though people are caring and compassionate, they still don't really get it, because they haven't experienced it. I feel like some people think I am just whiny and that I should just "suck it up", but it's not simply a matter of just "sucking it up". I wish it were that simple. I wish I could just "make up my mind" to feel better . That would make EVERYTHING so much easier!
4. I find myself to be...annoying. That's strange, isn't it? But it's true . Sometimes, I just get so cranky and miserable and I am totally annoyed with myself for it, but I have a hard time changing my mood. I have found, though, that if I can be silly with the kids, or listen to some music, it sometimes helps. Just not always . And I don't want to be stuck in those kinds of moods.
5. Sitting/resting makes me feel lazy. I don't like it. I never have. I have always been on-the-go...since...ummmm...forever . I think that's why I am enjoying blogging so very much lately. Because it makes me feel like I am actually accomplishing something (other than keeping the couch warm), in between taking care of the kids. And it bugs.the.heck.out.of.me to think that other people might think that I am just being lazy. I mean, it really drives me BoNkErS! And it shouldn't matter what other people think. But we live in a work, work, work culture, and I know I have a hard time with it, just for myself. So, I am sure there are many people who already think this or will think this of me. And that feels terrible to me.
Well, that's it. For now. As I said above, I promise I won't do this often. I am glad I was able to get this off my chest. And I am going to work hard to stay positive and focus on maintaining my health and taking care of my family as best I can. Thank you to those of you who actually read this post all the way down to here!
That's all folks,
MM
P.S. Feel free to leave a comment for me below...just be gentle, please. I'm feeling a little bit fragile emotionally right now. Thanks! ;)
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