Monday, December 21, 2009
My passion for driving began when I was very young and would go to the track and watch the Indy races with my father. He was also the one who taught me about cars and their engines (or ponies). We would go to car lots together, and look at the newest muscle car out on the market, and I loved every minute of it. When I'm in my car I have to be first and fast, even on my two minute drive to work. I'm sure I'm one of those people you shake your head at as I pass you by only to stop at a light a few seconds later. It doesn't matter, I got there first! Driving and driving fast are as much a part of me as my love for fashion. Recently on fb there was a "which cartoon character are you survey", my answer was "Speed Racer", Go speed Racer, Go Speed Racer, Go speed Racer, go!
I discovered a new limitation to my disease this Summer when I offered to pick up a friend from the airport, I hadn't done any long distance driving since my diagnosis with POTS, and a trip to the airport would be fun. As I was driving my arms began to become fatigued, and by the time I arrived at the airport they were so fatigued I could barely hold the steering wheel. That day I discovered that 25 minutes is my driving limit. At the time I took the news with a grain of salt, I think I was trying to deal with my heat intolerance issues, and I seem to only be able to handle one issue at a time.
Well, losing my long distance driving ability didn't really have an affect on my life until my father passed away this fall. My parents live five hours away, and getting to my mom on my own is an impossibility. I want to visit her and be by her side as much as possible. I want to help her get through this terrible time, and I can't be there for her. The old me would have made regular visits, now I'm at the mercy of my kids, who have very busy schedules. To be honest, it's frustrating, I'm suppose to be the driver, not "Miss Daisy"! Like in the movie, it's not about getting to the destination, but about the relationship built along the way.
I know I'm lucky I can still drive, many of my friends with this disease can no longer do so. So instead of whining, I'll cherrish my short distance trips, racing only to be stopped by the light, not by this disease. I can drive my own personal victory lap because, at least I got there first!
Since I first started these blogs, I've come to realize it's my way of putting a voice to the losses I come across because of dysautonomia. It's my way of mourning the loss of just one more thing. Thanks for the support many of you have been along the way.
Saturday, November 28, 2009
I remember when I was put in the hospital when I was first diagnosed. My biggest complaint was being stuck in bed. Times a wasting, there's things to get done! When the doctors told me I had POTS, which I had never heard of and surely couldn't pronounce, I was told things would be a bit different. Dependency on medication, and a lifestyle change were in my future. I was told that this disease could go ito remission as quick as it came. I'd have to slow down. In my head I thought OK, I can slow down, I can take my medications, I can do this. I had just finished a Bible study about resting in God. I thought this disease was a good way for me to learn a little something about resting and resting in God, and once I learned my lesson, life would go back to normal. Still wearing my rose colored glasses, and need a reality check.
I left the hospital with the thought that I'd have to slow down a little, and that this would probably go away soon. I had learned very quickly that my idea of slowing down was not the same as my bodies idea of slowing down. I was faced with a flood after I came home from the hospital and reality was about to set in. My refridgerator water filter pipe blew and created a small flood two nights after I came home. The family woke to the sound of water shooting across the kitchen and two inches of water on the floor of the kitchen, dining room and in part of the living room. My children and I began using towels to mop up the water, and as I lifted each water soaked towel it felt like I was carrying two hundred pounds across a football field. My children had school and work the next day, so I sent them to bed and I truly thought I could tackle the flooded house. I didn't last very long, out of breath, heart beating through my chest and the room around me spinning uncontrolably, I thought for sure my children would wake up without a mom. That night my body let me know who was boss, and it wasn't me.
I have been on the move for forty eight years and I still think I'm the energizer bunny, but unfortunately the energizer bunny has hit the wall. Picture your favorite toy as a child remember what it was like as it ran out of energy and would move ever so slowly until it no longer moved at all. Imagine you head for the kitchen cupboard for some new batteries, only to find there are none. Imagine the disappointment you feel because you are now unable to play with your toy until one of your parents goes to the store to buy more batteries. That's me! I start out feeling normal, and within minutes I'm laying on the couch out of breath. Wishing I had more energy, and I'm going to have to wait until my body re-energizes itself, which may take hours or the next day. The disappointment I have that I can't finish the task I started.
This morning I woke up with a hankering to tidy up the garage. So, I took on the task in my typical energizer bunny style, but within minutes my body took over as usual, if it could speak it would probably say "ha ha, you are a couch potato, a COUCH POTATO!" I didn't totally listen to my body and I put a decent dent in the project, but what would have taken a morning to do the whole job, took a morning to do a tenth with a dozen couch and water breaks and the help of my daughter.
I may only have a tenth of the energy I had before POTS, but I still have some enrgy to do the things I want to. I'm still getting use to having the mind set of someone in their thirties, with the stamina of an eight year old and a body that doesn't look eighty, a bit confusing...you think!
I guess it's time to quit while I'm ahead, my left hand looks like it has been soaking in purple die, and I keep missing the keys on my last three fingers, until the next post, consider all you can do a blessing, because you never know when you're body might consider your brain a joke.
Wednesday, November 18, 2009
Several months ago my doctor wrote me a prescription for a wheelchair. I had made a joke to my doctor about borrowing a practically antique olive green wheelchair from my church that creaked and clanked so loudly that people 100 yards away were aware that I was coming from behind. The doctor said there was no need to borrow a chair, that I could have my very own, yahoo.
The main purpose of the chair was to have it available whenever I need to walk long distances. Lately I poop out just going grocery shopping, so a trip to a warehouse store, the mall or a large campus would quickly send a circle of stars spinning around my head, and at times a medical crew trying to figure out what to do with me.
Some of you may be wondering what the big deal is. Yes, I know I'm not in it permanently. Yes, I know I'm lucky that I only need it for short spurts of time, and yes, I know I'm lucky I don't have cancer! For me the feelings for "the chair" run deep. I have a sister who was born with Cerebral Palsy, and for most of her life she used crutches to get around. But there were times when a wheelchair was needed. My sister often had major surgery on her legs or hips during the summer, and a wheelchair was needed to get her around. Now being the big sis, I had the privilege of pushing her around. I was her care giver during the summer, and being kids we loved going to the mall. It was only about a mile away, and the walk included crossing over a good sized hill with a paved sidewalk in which I would balance on the back posts of her chair and we would fly down the side of the hill. We had a blast on these trips, I was 12 and she was 8 and we would often push through the mall as if we were parting the red sea. People would dodge us in fear of being crashed into, and we had no fear of being chastised, because who was going to get mad at a 12 year old pushing an 8 year old in casts up to her thighs. These are good memories, but I had a roll to play, and I was not the one in the wheelchair.
For me, I've always been the care giver, the pusher of "the chair", my sisters defender, the healthy one. I was given this roll when my sister was born, and proud to have it. I have known from a very young age how fortunate I am to be able to walk, to be able to help, to be healthy. When I was a young child I always thought I would have a child who is handicapped, because I knew how to do that very well. I never dreamed I would ever have a need for a wheelchair. So here I am, and I can't move forward with this issue. I have two choices, get the chair and do the things I enjoy and miss, or don't get the chair and be stuck at home missing the things I enjoy. The sensible part of me knows what to do, but the emotional part of me still can't move forward.
For many who have illnesses, the difficult decisions, that mountain we refuse to climb are different. For some it may be quiting work, asking for help, using a shower chair, not driving or maybe as simple as using a daily pill box. Each decision is based on our past, our experiences and our individual viewpoints, and these decisions cut down to our very core of who we are.
I know for me this decision means giving up some of my independence, it's admitting I'm weak, it's losing one more thing to this disease that has taken so much from me already, and finally it's losing who I believe I am, the roll I was born into. I'm still no closer to filling my prescription, but hopefully I'll get there sooner rather than later.
Saturday, October 31, 2009
Before I was diagnosed with POTS I was diagnosed with RA. The medicine I was taking to help lower the inflammation between my joints could no longer be taken because of the issues with my heart, so I was then given a prescription for Naproxin, which I have been on for over two years now. I needed to see my doctor because my perscription had run out, so I scheduled my appointment.
My doctor walked into the exam room and must of seen "easy sell" on my face, or maybe it was the designer purse and shoes I bought before my divorce, whatever it was I was to become the lucky victim of her sales pitch. My doctor looked at my file, and proceeded with the concerned doctor, "so Michele how's the arthritis doing?" she asks. I tell her I'm in pain daily, but the Naproxin does help. She proceeds to tell me that she didn't want me to continue with the Naproxin because of other adverse side effects to my body. She then suggests that diet and a medical supplement might help. She explained why it would be a good idea to change to a healthier diet, and being a bit of a health nut, I jumped on board.
The doctor left the room, and soon a nurse with a plastic jar labeled "medical food", a bottle of vitamins and a pamphlet walked into the room. I should have known anything labeled "medical food" had to be bad. She gave me a five minute spiel about following the diet to a tee, and being the great dieter I am, I told her I was up to the challenge. The nurse put the "medical food" (large plastic jar), vitamins and pamphlet into a fancy bag and charge me a large some of money and sent me on my way. I think I might have been labeled a sucker at that point. But I was going to do this sucker or not!
I get home and began reading the ins and outs of this medical diet that's suppose to relieve my inflammation along with other health benefits, the more I read the more sceptical I became. No milk and no wheat, I'm thinking "I'm sure there's oat bread out there, and I'm sure rice or almond milk will do the trick". it also says no sugar or chocolate, I'm thinking "This sounds bad, but I'm sure I can find a substitute for sugar (no honey either)," no caffeine and no red meat, "hm this may be a little more difficult than I thought, but I'll adjust, and in 26 days I can slowly re-introduce the foods I miss". I decide to begin the diet on Sunday so I can shop for the ingredients on Saturday.
Saturday arrives, and I'm armed with my shopping guide, and a positive attitude. I get to my regular grocery store, I spend an hour in the bread aisle, there is not one single bread without wheat in the aisle! I decide to go to a specialty grocery store later in the day, surely they'll have what I need. I find the rice milk and almond milk, then add stevia (natures calorie free sweetener), along with the many other things that are on my list and head for home a bit exhausted.
Well it's time to do a taste test on the rice milk verses almond milk, I'm expecting them to be tasty, I like rice and almonds, so they must be yummy. I try out the almond milk, yuck! So I taste the rice milk, it has to be good, it's vanilla flavored! I give it a taste, and decide it's the more palatable choice, though no comparison to my beloved milk.
I decide I have to purchase the non-wheat bread, so I head for store # 2, I'm also looking for oat or rice cereal with no sugar. Can't find the cereal products, so I head for the bread aisle, after 20 minutes of searching I find a brown rice bread, and grab it quickly from the shelf, I almost drop the bread on my foot, and fear that the weight of the bread might break something so I take a giant step backwards. I pick the bread off the floor and drop it into my cart feeling joyful that I have found at least one item on my list. I quickly head for the cashier, who chuckles at the weight of my bread, but I'm just relieved I have bread to eat for breakfast.
I take my bread proudly home, and read the label to be double sure there is notheing taboo in the bread. I discover that the bread is made with natural juices and I'm delighted, so I give it a taste. How would I describe it, there is no description for it. It almost tasted like flavored cardboard, and when it landed in my stomach you could almost hear it land with a "thump". I'm still thinking postive and decide that tomorrow I would toast it and add apple butter.
Well it's Sunday, my first day of this new diet. I wake up to my usual nausia and light headedness, but I'll be fine once I eat. I open up the plastic jar marked "medical food", and am shocked to see that the powdery substance resembles the color of baby poo (mustard yellow). And when I smell it I think to myself "oh this is bad", my rose colored glasses I often wear could not hide the truth that this "medical food" was going to be a challenge. So I open my freezer and took out the mangos and peaches that will surely cover up any bad taste that this mustard colored powder could have. I make my shake which now resembles baby poo in a blender, and I poor it into my glass. I take my first taste, and the look on my face had to show the disgust at this aweful stuff I had just took a sip of. There was no hiding the terrible taste of the baby poo colored powder, it was aweful! I tell myself "don't give up Michele, you can do this, remember it's a diet, you are the reigning queen of dieting, you can't let this stuff win". So I take two more sips, then my nausia soon overtakes any willpower I may have had, and I soon resemble Mount St. Helen's, up comes the "medical food" shake. So I lay down for about an hour.
I get up, still believing that I can still at least do the diet thing, I knew I could never put the "medical baby poo" in my mouth again. So I head for the kitchen with an "I can do this attitude", and proceed to toast the brown rice bread, and heat up water for my herbal tea. The tea is ready, I add stevia and the rice milk. I spread apple butter on the toast, and begin to eat my breakfast (if you could call it that). The tea is terrible, the sweetener is worse, my toast tastes like sweetened cardboard, and again Mt. St. Helens errupts, and I lose my breakfast to my porcelain lover.
I didn't need a brick to fall on my head to tell me that this diet wasn't going to work for me. There is no way my body could survive on this diet, but it does give me a new appreciation for what people with dietary issues go through daily. Now you may be wondering what I plan to do with my 5 lb. loaf of bread, I've made a list;
1.Make homes for the homeless using the bread as bricks, if they get hungry they can eat their home.
2. Carry it in the car or leave it on the side of my bed, and use it as a weapon.
3. Firemen could use it to break into houses, just throw it at any window.
4. Use it as a door stop.
5. Buy a second loaf and use it as a weight for weight lifting.
6. Use it as a paper weight.
7. Stack them along riverbanks to stop flooding.
I think you get the picture.
Hello milk and wheat, hola coffee and Chai latte tea, guten tag sugar and meat, I did miss you, even if it was only for an hour or two. I have a new appreciation for my delicious food. Good bye "diet food" may you never cross my path again!
Sunday, October 25, 2009
Survivor Lakewood takes place every day in my little circle of life. Every day I plan my strategy to best get through my day. My immunity chalenge includes paying close attention to weather reports, making decisions of what I can and can't do, obeying my body when it begins to shows signs of weakening, diet, meds, clothing, and stress. They all play a huge role and poor planning could cost me days in bed. But a day planned well means a victory lap around my coffee table. Though on occasion POTS can be sneaky and blow me away even with the best planning.
Daily survival takes some work, and I've learned that I no longer sweat over the little things that come up in my life. People's opinions use to matter, now I just do my best and if it's not enough, it's their problem. I use to worry about a clean house, now I figure it'll get clean sooner or later. I was so good at worrying, that I thought about taking an add out in the paper and offering to take on other people'e worries! Now the serenity prayer makes more sense to me now than it ever did before, "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace. It's taking things one moment at a time, not worrying about what has happened in the past, and not fretting over what can happen in the future. Living one day at a time, and enjoying one moment at a time has made coping with this disease much easier. I cannot change this disease, but I can change my attitude about how I face it daily. I have noticed the symptoms are getting worse, but my appreciation for the things I can do have become stronger.
This disease has taught me to appreciate what great things I have in my life, and to enjoy every minute of the people and things that are in my life right now. They may not always be there in the future.
So, how would I do on Survivor Samoa, I wouldn't make it on the boat to the island, they'd probably have their first funeral at sea, boy imagine the tv ratings for that. Though I'm not sure how well those playing Survivor Samoa would do playing Survivor Lakewood.
Survivor Lakewood's motto; BE RESOURCEFUL, FLEXIBLE AND THANKFUL.
Hunk: "Bachelorette #1 what would be your dream date?" answer "Rock climbing in the grand Canyon"
Hunk "And #2 same question?" answer, "A bike ride on Santa Monica Beach."
Hunk "Bachelorette #3 same question?" answer, " A couch, a cool room, salty popcorn, a 1/2 gallon of water, and HBO"
Next round of questions, "Bachelorette #2 describe Bachelorette #3."
"Well, she has her head between her knees, she's a bit green from puking, her hands are purple, and I believe I see compression stockings peeking out of her jeans!"
Well you've got a good picture of my dating appeal. I've been on an online dating service for a while now, and filling out the profile questions honestly has been a challenge. Questions such as; "What do you like to do in your spare time?" Hmm I use to like to hike, bike, visit historical houses, sight seeing, exercise, and gardening. What do I write, I'm best when I'm laying on the couch watching tv. That's going to bring them in by the droves! And I love this question, describe yourself; I'm pale from lack of sunshine, purple hands, wear compression stockings, and I have an intimate relationship with my toilet, so if y0u're the jealous type, do not inquire. Now honestly I'm not always that bad, but the reality is there are many times I am. I'm not exactly what you would call "a great catch" if you're looking at me from the outside. I know I have some great qualities on the inside, but it's getting someone to look beyond my disease that's the hard part. I know it's hard to find a decent guy even if you don't have my medical issues.
I recently shared my dating concerns with a male co-worker, I asked him "Who would want to date a girl who spends most of her weekends in bed?" He chuckled and responded, "I can think of quit a few guys who would want to spend the weekend in bed with a gal!". We both chuckled, but as I was walking away, I had a smile on my face because......there may be hope for me after all! Now really that's not the kind of guy I want (hehehe), but there must be a nice Christian couch potato out there that will laugh at my bazaar jokes and doesn't mind sharing me with the toilet.
Thursday, October 22, 2009
I guess you could say I'm having an identity problem. I am not a SLUG! I struggle every day with this body that I don't recognize and refuse to except. The only problem is no matter how hard I try to tell myself that this new Michele is not real, my body reminds me that it is. This body with little energy, nausiated every morning, purple hands and feet, fatigue, heart palpitations, shortness of breath, heat intolerance and medications that are more like poison than healers.
What happened to the Michele I've grown accustom to over the past 48 years. Where did I go. Part of me was left in that transporter room. What happened to the Michele who could garden for hours, who loved to shop till I dropped, who could clean from dawn 'til dusk, who could hike with an attitude because those I was with couldn't keep up. Where is the woman who could watch one of my students soccer game in the sun and only worried about getting a sun burn. What happened to the Michele who loved being involved in an amazing ministry 3 days a week, what happened to being out 5 nights a week volunteering or at church. What happened to the full weekends? What happened to the woman who enjoyed being healthy and physically fit. Where did I go?
I am trying to adjust and accept this new and unfamiliar Michele. I'm just having trouble letting go of the old me, and just as I begin to adjust and accept this new me, a new symptom of this disease pops up and I have to start all over again. I do what I can, and I am thankful of what I can do. I have two amazing children who help me alot. I have some wonderful friends who stand by my side, I have a great job that I love, I still have all my body parts, and I don't have cancer. God is good, I see His miricles working in my life every day. I am amazed that I arrive to work so nausious I can barely stand it, but when my students walk in, I feel almost normal, then when the children leave the symptoms come back full force. I call it my working miracle.
There are some positive changes to my psyche since my diagnosis of POTS, I am more resourceful, patient, and thankful. Life is a waste if we don't learn from our experiences, and I'm going to try to learn as much from this experience as I can. In the mean time;
BEAM ME UP SCOTTY!
Saturday, October 17, 2009
This week a favorite childhood song keeps replaying itself in my head and somewhat explains how looks can be deceiving. It's a "60's song called "Windy".
Who's tripping down the streets of the city?
Smiling at everybody she sees.
Who's reaching out to capture a moment?
Everyone knows it's Windy.
Windy appears to be a normal girl of the '60's, but could Windy have POTS? It's a possibility, she's tripping down the street. You may be saying come on Michele it's the '60's she was probably on drugs. Well, Michele is wearing her rose colored glasses and thinks Windy might have just been clumsy. Who knows why Windy was tripping down the street, but we do know she is friendly and spontaneous from her outer appearance in the song. Windy could easily be me, but I'm probably tripping down the street because of dizziness from POTS, I do try to smile at everyone I see, I figure if they don't smile back they're probably having a bad day (poor them). I try to make every moment count, because I know there's a posibility that I won't be able to do it tomorrow.
Looks can be deceiving, from the outside I look normal. I often get "Michele you look great today!", it's amazing what make-up can do for a gal, and there's a good chance I may barf on their shoes at any minute. They don't realize that my trip to church may be the only thing I'll do that day, because being there has worn me out and I'll have to spend the rest of the day in bed to recoup. While the rest of the world is planning what activities they are going to do for the rest of the day, my day is planned for me, "heigh-ho heigh-ho, it's of to bed I go!". For the longest time I felt deceptive, what do I say to those people that complement me on how good I look. I've learned to take the complement and only share how I really feel with those I'm close too.
My healthy appearance often gets me funny looks as I get out of my car while using the designated handycapped parking place. There are no outer signs informing people that I may pass out from heat intolerance on very hot days. Though the self concieous part of me would gladly wear a sign saying "HAVE POTS" (though that might draw some unexpected attention to myself) but I would wear it just so people wouldn't think poorly of me. Believe me, I dispise using the handicapped parking, I'd much rather take my old route of parking at the far end of the parking lot and get a little exercise while walking the extra distance.
The vane part of me is glad I don't look as bad as I feel, and to be honest if I looked as bad as I felt I wouldn't want the attention that would bring. As my Bob blog friend Michelle would say, I don't want anyone's pity. I just wish I felt as good as I look sometimes. Though I have to say in my kindergarten classroom, I could come into work, hair a mess, no make-up, and feeling aweful and my kindergarteners would honestly from their precious little hearts say "Mrs. McGough, you look beautiful." No matter how bad I feel, those sweet little darlings always put a smile on my face, and I forget how bad I feel on the inside.
Wednesday, October 14, 2009
As I was growing up my dad would often have these sweet father daughter talks with me. In these talks he would stress to me " Michele, it would be nice to see you married some day but.... you never know what may happen in life, so you must learn to be independent!". Then different discussion topics would follow that line. I would be told of the importance of getting a good education, making good career choices that pay well, how to change a tire or the oil, the evils of credit and the list could go on but I'm sure you get the jist. I loved these talks, and was fortunate to have them follow me into adulthood. I would often get them in a letter, with newspaper clippings and his opinion on topics he thought I could use his advice on. Thanks dad!
Because I valued his opinion, and for the record I followed his advice. I went to college, and I have a good job that supports my family, and he was right, my husband left and I had to support my family on my own. I love being independent, and I'm glad I had my dad as a role model. I can't remember a time when my dad ever asked for help, you either do it yourself or pay someone to do it.
I can remember as a young mom trying to take on the roll of supermom. Work full time, clean house, dinner at 6:00 soccer/dance practice, attending college, laundry, try to be a good wife, I did it all. If I couldn't do it all in a day I would sleep less and catch up at night. I was exhausted but never asked for help. No wonder my husband left, he was probably bored because I was doing it all.
As far as I'm concerned no-one could do my stuff as well as I could. Asking for help in my eyes meant that I would have to admit that I can't do it all, and that I am a failure. I always felt that if you asked for help people would think you were a leach. A leach was surely something I had no desire to become. I'm sure you know the people I'm referring to, those people who ask for help and suck you dry. Offer them a hand and they'll take an arm, licking their lips and scanning your body for their next meal. I definately didn't want to be one of "those people". Finally, I didn't want to burden anyone else with my responsibilities.
Well God must have been looking down on me and laughing, because nothing was going to change my attitude. I often think God gave me POTS to rid me of my independent, prideful, self absorbed attitude. I needed an attitude adjustment, and getting POTS did just that. There are so many things I can't do on my own anymore, and I either ask for help or it doesn't get done.
Asking for help isn't as demeaning as I had envisioned it to be. I've learned that Miss Independence was often doing it all alone. Miss Independence was often tired and resentful. Asking for help means that I get to do things with people instead of alone. Getting help allows me to use my energy on my family instead of using it on exhausting tasks that have little value in the long run. I've learned that allowing others to help me makes them feel good , as I know I feel great when I help a friend, so why not ask.
I will say I'm not 100% on board yet, it's still very hard to ask for help. I've struggled with being pushed in a wheelchair at Disneyland, having meals made for me, asking my kids to help more around the house, having a co-worker put up my bulletin boards or getting help with grocery shopping. Grocery shopping has been the most difficult. My dad and I did the shopping together until I left my parents house at 23. I loved shopping with my dad, my dad and I had our biggest laughs while carting our groceries through the store. I loved when he would give his best chinese accent in the oriental food section, then quickly go into his Spanish accent as we passed by the tortillas. But since I've been diagnosed with POTS it is probably the most exhausting task I have now, but the one I'm least willing to give up. As I am writing this I believe I have the answer to this problem, I think I'll ask my darling daughter Megan to shop with me or maybe my handsome son Sean, maybe I can pass on some of those joyful experiences I had with my dad on one of them.
Good-bye Miss Independence, Hello Miss Dependent, life's tasks are meant to be shared!
Tuesday, October 6, 2009
I love this song from my favorite musical "Singing in the Rain". In fact for years it was the song I would sing to my children to wake them up. I'm not sure my children have the same love for this song as I do. Their responses of moaning and covering of their heads with their blankets should be a no-brainer. I'm sure it wasn't my amazing voice that triggered this response ( I sing like a 5 year old) or maybe pure disgust over my cheerful mood. My families morning demeaner has always been totally oposite of mine, not my problem, I'm too busy singing to care!
I'm one of those people who love the mornings and can't wait to get out of bed and start my day.
I have always been a morning person, waking before the sun rises and taking great pride in getting things done before the rest of the world is out of bed. My average morning consisted of brewing my favorite coffee (raspberry chocolate from "It's a Grind") breakfast, quiet time with God, scouring of the bathroom and grocery shopping all done before 8:00. The rest of the day often followed the same pace.
I didn't realize a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) would drastically change my blissful busy mornings. I should have seen the flashing warning signs when the doctor gave me a list of things I would need to change. They mainly consisted of morning activities. Some of the things on the discharge papers were:
* Bathing must be done at night.
* Rise slowly out of bed.
* Drink 1 quart of water or Gatorade before getting out of bed.
* Limit morning activities
* And my all time favorite! Drum roll please.....
Change bowel movement to later in the day.
Yes, you read that correctly. I didn't want to appear ignorant, but REALLY, REALLY!
Not quite sure how to manage that one.
Reality set in on the first morning home, I forgot I had POTS, and got straight out of bed (habits die hard), and found myself on the floor seeing only black and wondering what had happened. The rest of the morning was a nightmare. Not wanting another morning like the one before, I realized this was serious and decided to change my morning routine.
1. Wake up and wiggle hands and feet, do this for 5 minutes.
2. Slowly rise, wait another 5 minutes.
3. Sit on the edge of the bed about 5 minutes, a quarter of an hour has been wasted.
4. Drink very large glass of water even though I really really have to use the restroom.
5. Slowly get out of bed, feeling unsteady but I really need to use the restroom!
6. After my trip to the restroom, I sit at my computer to rest for 10 minutes.
7. I feed the anoying meowing cat, rest 5 minutes, another quarter hour passes by.
8. Make COFFEE! Rest another 5 minutes.
9. Make toast,too nausiated to eat anything else, rest another 5 minutes.
10. Do my hair (10 min.) another quarter hour has come and gone!
11. Quiet time prayer/Bible reading. Scheduled so I can rest in between the next thing (30 min.). 12. Get dressed, rest 5 minutes.
13. Can't go to work without make-up (10 min.)
I've been up a little over an hour and a half and I have accomplished very little.
14. I'm pooped, rest 10 minutes.
15. Make lunch, and gather things I need to take to work.
*Note to self can't forget the extra sweater the air will give me a chill,
and get the ice-vest for the heat later in the day.
16. Rest again.
17. Add extra time in case I lose my breakfast.
Out the door in 2 hours, it's a good thing I work 2 minutes away, if I had any kind of commute at all, I'd probably be out of a job! I know I'm lucky, some of my friends who have this disease can't work and would gladly go through this routine to be able to work again. And I totally think my new morning routine is worth it just to get to go to work and do what I love and have a passion for.
I so appreciate what I can do now, because I realize it can all be taken away at any minute. Life is precious, enjoy every minute, you never know when that one thing you love may be gone!
Tuesday, September 29, 2009
So you may be wondering at this point what any of this has to do with Dysautonomia. Well..... before I was diagnosed with dysautonomia I enjoyed going on long shopping trips at the mall and keeping up with the latest trends and dressing up. Things have changed quite a bit since my diagnosis.
This Summer shopping is no longer something I can physically do without major planning. Since I'm heat intolerant and cannot be in temperatures over 75 degrees for more than a few minutes. All shopping trips have to be made in early morning or late evening. Since I am usually exhaused after 6:00pm evening shopping is out, and the malls usually are not open till 10:00 am so often a shopping trip in the morning is out as well because of the heat. Long distances are out because I get tired just walking across the parking lot. Forget about comparison shopping, I only have energy for one store, if they don't have what I want too bad for me.
This Summer I received a catalogue from one of my favorite stores. They were having their anniversary sale, and were opening at 8:00 am Woohoo my first outing in weeks. But before I could take this glorious trip to my favorite store I would have to make a plan of action. So here it is;
* Look through the catalogue for all items I want.
* Make a map of where items are in the store and the shortest distance from point A to point B.
* No deviating from the map! If I do;
a) I may not have the energy to complete the list.
b) I may not be able to get back to my car with the ability to drive home.
c) The store may have to call a wambulance because I've passed out from too much shopping.
* Plan where I'm going to park,
a) It must be shaded because I may pass out in the car if it's too warm inside.
b) Park close to the entrance, I may never make it inside if I pass out from exhausion before I
even get in.
* Hit the shoe department first it's right next to the entrance.
* Show the salesman the catelogue with the shoe, I'll be wasting energy looking for the shoe
* Try on the shoe, don't stand up I may get dizzy and be mistaken for being under the influence
and be escorted out of the store.
* Give the salesman my credit card, and ask for the transaction to be made on the salesfloor, too
tired to stand in line.
* Going up the escalator, hold on the vertical movement throws my heart into tachycardia!
* Quickly move aside for those aggressive anniversary shoppers and hold onto a railing till my
heart slows down to normal.
* I'm pooped, find a saleswoman to find one of the items in the catalogue.
* Found someone woohoo, and she happens to be a personal shopper.
* At this point I'm out of breath, and bless her heart she takes over.
* Personal shopper takes my catalogue and gets my sizes and walks me to a dressing room to
wait for her.
Normally at this point I would be taking great pleasure in choosing my garments, but now I'm just thankful that I might be able to complete all my shopping without an EMT being involved.
* I try on all items brought to me by my new best friend (personal shopper) with spuratic naps
on the most comfortable dressing bench I have ever layed my head on (which was none until
* My new best friend (personal shopper) rings up my items while I'm napping on the dressing
* Give new best friend (personal shopper) hug, and head downstairs.
* Relive previous trip on the escalator.
* Cover my face as I pass perfume counter, my new sensitivity to scents may cause breathing
issues, which would most likely be followed by all other dysautonomia symptoms. Avoid
EMT at all cost!
* Head for the car.
* Head for home.
* Bribe my children to bring in shopping bags.
* Take a nap.
* My body will probably pay for this trip for days.
I've come to realize that shopping is just too much work, and catalogue shopping can be almost as satisfying, but I will miss my new best friend (personal shopper). I wonder how she's doing.
Dysautonomia has also pushed my fashion savvy a bit. I've gone from donning my favorite designer, to donning an ice vest, compression stockings and a big black umbrella. I'm sure I'm quite the fashion statement during patriotic observance at my school. I can just hear the teachers in the staff lounge "Wow, did you see Michele in that fashion forward icevest, I wonder who designed it and if they have it in my size", NOT!
The icevest does have it's payoffs though. the other day one of my students gave me a big hug, and wouldn't let go. I tried to get her to let go and head into class, she said "ohhhhh do I have to Mrs. McGough, you're so cool!" Next thing I know half my class is trying to cool off by giving me a hug. Who says teaching doesn't pay!
Monday, September 21, 2009
How should I begin, I guess I'll start with something I miss alot, the beach. I love the beach, the cool breeze, the moist sand between my toes, the waves crashing and the water easing to the sands edge just hitting my ankles, the smell of salt, the warm sun on my shoulders, can you see it? I remember heading to the beach on a whim, no plans I would just take off and go. A beach trip now takes some planning for me, I can't go in the day, I have extreme heat intolerance, can't go alone, I may pass out just trying to walk from my car to the water, and if I do make it there's a good chance I'll be too tired to walk back. I know that if I really want to go somewhere special like the beach I have to ask those amazing people God has placed in my life to help me get to the places I really want to go. Before Dysautonomia I often experienced the beach alone, now I get to experience the amazing wonders of the beach with a few of my closest friends, who don't mind taking things a little slow. I'm beginning to learn that what feels like a curse could be a blessing in disguise.