Category Archives: Flare-up

OUT OF BALANCE

I wrote in my journal this morning that I have gone 33 days without a flare and while I’m writing away in my journal I’m feeling as though there is so much I want to write but nothing is coming to the surface for me to write about. I went for a walk and did some weight training thinking that the sweaty morning would be what I needed to make me feel whole. After an hour and half of sweating, grunting, and working my body I was still feeling out of sorts. I had a yoga class planned but I got there early so I could spend a little time on my mat by myself before the rest of the class came in. The Sunday morning group are delightful people who I enjoy speaking with at great length but I needed a little time by myself in a comfortable environment with a little quiet. I got to the studio unrolled my mat and started in Mountain Pose or Tadasana.

I must say ahead of time that with my teacher training I am working on my Mountain Pose all the time. Getting the triangle in my feet just right, laying all 10 toes on the mat equally, locking my legs without locking my knees by really using my quads and hamstrings. Tilting my tailbone towards the floor, lifting my abdomen. Opening my heart center by seeking my shoulders downward. Pulling my chin back, lifting my head ever so slightly, and yes breathing. This is how I have learned this posture, this is how I spend hours practicing this posture. This is how I see me doing this posture really well.

This morning I got on my mat, rooted my feet and felt my body do what it wanted to do, not the words I speak so quietly in my own head about this posture. This is not my time to teach or be taught, this was a few minutes on my mat by myself to let my body do what it needs to do. I knew I wasn’t in a perfect posture, but no posture is perfect. The beauty of yoga is that we can always be changing our postures based on what our bodies, minds and spirits need. There are many times in my life when I need to be perfect or want to perfect, whatever that perfect looks like for me at the time. In the yoga studio I do not seek that perfection. I can be exactly who I am, a non-perfect woman, wife, daughter, sister, aunt, friend and yoga practitioner. The beauty of practicing alone is that there is truly no judgment. I do not see myself, no one sees me either and I am doing exactly what my body wants.

I felt really out of balance this morning and honestly needed a good cry on my mat. What am I sad about? I have no idea, I rarely have time to be sad and I rarely find myself in a situation where I am sad. I could be confusing sadness for honest and great fatigue. I know that I’m out of balance and haven’t felt great since my flare which was about 37 days ago. I don’t know what brought that flare on and I don’t know why it is taking so long for my body to get back to my base line. I have tried extra sleep, I have tried physical therapy. I have tried hours upon hours of quiet time on my yoga mat. OK, that is not true, I am on my yoga mat for hours upon hours but that is because I’m in teacher training and have to train, practice, and train some more. I am exhausted with life and feel so fatigued that I want to cry. This feeling out of balance has gone on long enough and now I’m desperate to find that balance I need so much. During my class I was using a mantra “I will find balance” I said it over and over at different periods of that 90 minutes.

As my husband and I went about our day doing chores I was saying in my mind, “I will find balance” and as we walked the golf course playing for one of our final days I was saying “I will find balance” the more I say it the more I will believe it. This is part of my living yoga, not just learning it or teaching it but really living it. We all find ourselves out of balance. Sometimes it is for short periods of time and we find our way back with ease. Other times it is for long periods of time and we aren’t sure how to find our way back. I am living in the world of unbalanced and I realized that being “desperate” is not the way to find my way back but to actually start moving myself back to a place of balance.

This evening I’m giving my body exactly what it needs which means I will sit quietly, by myself, watching a sad movie of my choice without judgment and just cry if I need to. I won’t force it because if I find that the cry is not really what I need but more just some quiet time there is no need to cry I don’t want to force it. Finding balance is going with the flow, being in the moment, and letting things happen the way they should. I don’t want to dictate how to get back my balance, I want to feel the balance make its way back natural. I just hope it happens soon.

BACK TO PT

This past year I was feeling so strong and yes even a tiny bit arrogant because day after day went by without a flare and watching those days tick by made me think that I could focus my energy on strength through weight training, more spinning, and lots more yoga which I have been doing but in the process I gave up my physical therapy all together. I didn’t just cut back I cut it out and looking back at this past year I think that may have been a mistake. I was using regular PT as a way to keep my body healthy and keep good energy flow from feet to jaw. Taking the year off I didn’t realize that my body was falling out of alignment again and things were getting twisted. However, 4 weeks ago I had my first flare after 440 days and my body really hasn’t recovered fully. I am back to doing my normal weight training, spinning, Insanity, walking, and with my yoga training I’m doing yoga every second that I’m not doing something else so a big increase in yoga. Someone looking at me from the outside would think that I was right back to normal. I call it base line because I will not be normal, but my body has not gotten back to base line. My hips, hands, and jaw are still very stiff and very sore. I can function just fine so I’m not still in flare but I can tell something has changed.

It could be the change in the season, it could be I’m not doing Bikram anymore so my body doesn’t have the warmth it had for 10 years prior, it could be that I’m pushing it harder with spinning and Insanity that I wasn’t doing previously, but I refuse to believe that I’m just getting older so things are going to be stiff and sore.

I decided it was worth a trip back to the PT to see what they thought and it was obvious to them that my body found itself out of alignment again. My shoulders are not even, my hips are not even and my posture has slipped a bit even with the hours I’m spending in Mountain Pose. What does this mean? It means that I need the PT to get back into alignment and that PT may be a piece of my health puzzle that I always need. I started with a couple times a week to get started and will drop to once a week shortly and after a few weeks when things seem to be back to base line I can figure out how to work it into my regular life again. That will mean something else will have to give and since I’m making my life about yoga, I am certain that yoga will not be sacrificed. I also need the weight training to stay strong and healthy, and don’t’ forget walking, we all need to do more walking, so that leaves spinning and Insanity. I love spinning and can do it first thing in the morning so it comes down to my lunch time Insanity class. As much as I enjoy Insanity I will not be able to do it as often as I have been but it is probably better for my body to have a break.

Our bodies need breaks and I think my body is telling me it is time for a break. I am willing to listen and do what needs to be done in order to find that nice balance again. It might take some time but all I have is time. My MCTD is not going anywhere and each day that passes by is just a reminder that I need to balance the autoimmune with good health. The good health comes in the form of nutrition, exercise, rest, recover, sleep and flexibility.

NO DENYING I’M IN FLARE

As much as I want to ignore it and pretend it is not happening I am in flare. After 440 days my body has decided to revolt for whatever reason and has turned on me. I have been feeling so strong and so good for so long but this morning I woke up and my body was hurting, I have a fever, I have a sore throat and my hair feels different and it hurts to touch it. There is no denying that I’m in flare with all those symptoms. I have to take it easy, bring my body back to life in my new normal and start again. It does give me hope that I went as long as I did but it is a reality that I still have MCTD. Sometimes you wonder if you are cured when you go long periods of time but I will never be cured.

What caused this flare? It could be the weather, it could be that I didn’t sleep for nearly a week and my body just couldn’t take the exhaustion anymore. It could just be because I got into something or near someone that had a virus and I caught a little bug. Either way it doesn’t really matter what happened but it did happen and now once I feel better I start the process over again. I do believe that I can go the distance again but I need my body to get back to normal again in order to start the process and it might take several days to get back to my new normal before I can start the process.

As much as I’m disappointed I’m also so grateful that I went as long as I did and that my body was strong enough to last 440 days without a flare. It gives me great hope to do it all over again. Maybe even get to 500 days this next time but certainly I need to get better and back on track.

DE-STRESSING DOES WONDERS

It is no surprise to anyone that stress is a negative health trigger and with MCTD it can take very little stress to send us into flare. 11 years ago when I was first diagnosed my Rheumy had mentioned that the less stress I have in my life the better I will. For many years I lived by those words and although we cannot reduce all stress in life there are ways to keep it low. I lived a moderately stressed life for many years and felt like I was in a good place in my life. I had flares like anyone with MCTD and sometimes I knew exactly why they happened and other times I really couldn’t pinpoint the cause. A couple of years ago I took a new job at my company knowing that I was entering a new realm in life. Within the first year of taking this job my blood pressure which had always been normal had gone into dangerously high, my sleep become sporadic and restless, my eating become sporadic with severe cravings, my doctor diagnosed me as menopausal with adrenal fatigue.

My second year at this job was more the same, I was able to get my menopausal symptoms under control which helped my sleep patterns and allowed me to feel more rested in the mornings. My blood pressure fluctuates between normal and high quite often. I spent 6 months doing nothing but walking and yoga to try and get my adrenal fatigue back to normal and just continued to live with the severe cravings, weird eating habits, and sporadic meals. However, all of this was painting a much bigger picture in my life that yes I could live like this but should I? Do I really want to endure this type of lifestyle? Is this really the best thing for me, my health and my family? Am I happy at this point in my life? Am I living the life I want and do I still feel charmed? I have been asking myself these questions for several months now and each time I keep coming back to the same thing.

My intention was to work really hard for a shorter amount of time and then do something that I really want in the next stage of my life. However, after only 2 years I realize that I don’t have another 3-5 years of energy to keep going this way. Now some might say that I haven’t had a flare in 410 days so the stress doesn’t seem to be making me flare or setting my MCTD and yes that is a true statement but I also don’t believe I’m as healthy as I could be. Some might say how much healthier can I get and I believe a lot healthier. I believe my mind is not nearly as healthy as it could be, my body could be even stronger with a little less stress and my soul could be happier as well. I enjoy my life and my family and for the most part I do still feel charmed but things have taken a turn for me in the last couple of years which is making me re-examine where I’m going.

I spend hours a week doing yoga and yet my golf pro believes I’m one of his most stressed and tense clients. I work out and lift heavy and yet my trainer believes I could be stronger. I love my family and my husband but yet they think I have taken on too much and don’t want to overwhelm me. I also believe I have taken on too much and need a little less overwhelm in my life. How do I get back to the place I was and how do I de-stress a much stressed life?

My answer is to make changes. This is not easy and not for everyone but one of the lifestyle changes that the Paleo community believes in is to get to a place where you are living and loving life. Doing what makes you happy and healthy. Working towards a moderately stress free life and enjoying that stress free life. I am not naive enough to believe I will be stress free but I do think there is plenty of room to decrease stress and I’m find my avenues. I have agonized over how to make this work and my day finally came. Once I started the process I immediately started to feel better. I slept so good for the first time in a really long time and honestly I thought I was sleeping well before. There was a time in my life when I would go to bed, wake up before my alarm and be ready to start the day. That has not happened to me a in a long time. Really I would go to bed, wake up before my alarm but not feel that complete restfulness. I have a golf lesson this weekend I’m hoping my golf pro says to me that he notices that I have de-stressed and released some tension and perhaps my golf game can really take off. In the grand scheme of life golf is not important but it is an indicator of what my body and mind are doing and perhaps it will show me real markers like a constant normal blood pressure, good eating, low cravings, and wonderful sleep.

Teetering with Flare

A Black and White Cartoon of a Fatigued Housewife Collapsed In a Chair - Royalty Free Clipart Picture

 

picture from http://www.picturesof.net/pages/100802-143365-880053.html

Today I’m at 384 days without a flare but I certainly was teetering on the edge of a flare yesterday at day 383. I woke up early and I really didn’t feel like getting up and starting my day, so to do any form of exercise first thing did not feel appealing. I decided to stay in bed just a bit longer and got up to head out to my yoga class. My first yoga class was hard and I felt my body disagreeing with being there and stretching in triangles, warriors, and folds. Since I didn’t work out before yoga I decided to stay for class number 2 and and after my 3rd downward facing dog my wrists were in agony so when we were in plank and flowing into chaturanga I really regretted staying for another 90 minute class but I knew that my body was stronger than my mind was letting on and I finished the class with grace. We hit the floor in savasana and it only took a brief second for me to fall asleep right on the floor. I did wake up as soon as I heard the instructor’s voice again but I realized that I was facing a high level of fatigue.

I headed home and my husband could tell immediately that something was not quite right so I headed in and just laid down for what I thought was going to be a brief moment but instead it was an hour, and when I woke up I was feeling so much better. My body was not in agony but my mind was still pretty tired. I think I was dealing with a very high level of fatigue so I had to listen to that inner voice and just take it easy. I’m so glad I did because the rest of the day and today I am feeling much better and although I was teetering on the edge of a flare I do not think I went over to the other side and I didn’t end up in bed feeling very sick so I feel like listening, acknowledging and dealing with the facts of my body at any given time can really help me stay in the flare-up free zone.

Today was a day that started with a lot of exercise including strength training, cardio, and my new favorite find, golf. My husband and I have been really enjoying our trips out to the course and spending time together in the fresh air. Being able to laugh at ourselves has really helped keep the frustration at bay with this game they call golf.  

1 YEAR WITHOUT A FLARE

Today I have been 1 year without a flare and I have so many things running through my mind. I wonder where my next year will take me and I’m hoping I can continue this path of being flare-up free. I have been working so hard on my fitness and getting stronger and I wonder if that is the key for me. Could it also be that menopause has stopped the influx of hormones which in turn has quieted my MCTD? I have so many questions and not a lot of answers. My family wants to hear what I think is the reason behind being flare-up free and although I don’t know for sure I have a theory. Before MCTD I was not an active person by nature and thus didn’t exercise. When MCTD came into life the pain was so bad I couldn’t walk and my Rheumy just told me to start walking and use a pedometer to ensure I was getting 1500 steps a day which is not much but felt like too many back then. As time went on and I became more fit and exercise became a regular routine in my life I spend hours at the gym on the elliptical, in classes, walking outside whenever possible but not much weight training. I also didn’t understand how to fuel my body for exercise to that extent so I was burning major calories but not taking enough in and causing stress to my body. Literally I was causing a trifecta of inflammation to my body every day and ultimately would flare. My Rheumy wanted some weight training built into my routine each time I did weight training and while my muscles healed my body would flare so it didn’t take long for me to let the weight train slip by and stop altogether.

I did this for many years and would keep a journal of how many days I was flare-up free and kept waiting to reach 90 days. I used Bikram yoga for 9 years as a way to keep my body loose and enjoy the heat which my body loves but in truth that is a stressor as well and causes inflammation but I did finally reach 90 days without a flare and decided I need to figure out how to get more of those 90 day periods. I actually got to 180 days but then went into flare just by being too cold. Temperatures, my fragile immune system, and the added daily inflammation were too much for my body to endure so I flared. Once I flare it takes a long time to get back to a long period being flare-up free again so I struggled. It wasn’t until a couple of years ago when I embarked on the Paleo lifestyle and incorporated walking, Bikram yoga and weight training into my life while eating real food. I am not 100% Paleo today and although there are days I wish I were I’m too emotionally attached to food to be 100% so I live in a 70/30 realm and try to keep my diet as clean as possible. The weight training has really proven to be beneficial and I feel stronger than I ever have before. I started eating meat the same time Paleo came into my life and I think that combo of high fat protein, exercise and many more calories is again the trifecta I need to keep my body strong. I know I still have inflammation because my test results show it but I don’t feel it like I used to.

The last decade + MCTD has been my identity and write this blog because of my MCTD but now I don’t have much to say about it and I don’t see MCTD as an identity for me. I know I have it, but I don’t feel it and it doesn’t stop me from doing what I want.

I’m trying so many things and doing so much but keeping my core keys in tact which is eating enough. This is the most important thing I can do. In truth I have gained 10 pounds in the last 1.5 years as I have added the weight training, meat eating, and more calories into my life but according to my trainer I need this and perhaps one day I won’t care what the scale says or even have the urge to look at the scale but right now I look and sigh and then remember that I have gone a year without a flare. Sure I could get extreme with diet and exercise but to what end result? My fear would be a flare which I’m not willing to do.

I just keep doing what my trainer asks of me and find myself lifting heavier each week, feeling stronger each week and watching the passing days without flares increase. Now if only I felt so good about my golf game!!

HUNGER

Today I’m at 310 days without a flare-up, have successfully reduced my prednisone and find myself sleeping so soundly that I need an alarm to get up each morning. There was a time when I didn’t even need an alarm and my body just automatically woke up at 4am. I do believe I may not have been sleeping very well all that time so my body was anxious to just get up and get the day started. Now I need to give myself a little more time to sleep and when I get up I decide then what I will do. Some mornings I wake up ready to walk, or ride my bike. Some days I need my weight training, some days I wake up stiff and need some yoga. Although I do usually have a plan before I go to bed for the next morning I really change it based on how I am feeling in the morning.

I have been keeping a journal each week for my trainer and he asked me about it this past week. Not in a bad way but just noticed my food had increased in the week and I had to tell him that I’m hungry all the time. This hunger is real hunger, sure some is probably mental but I have read that if you could eat vegetables or meat then your body is hungry. That is what is happening right now. I feel this hunger so I drink a big glass of water and then I still need food. My increase has been significant but I also am training on my bike 5 days a week, along with my Insanity, weight training, vinyasa yoga, and walking. My body is burning so many calories and although I’m replacing them I’m finding that the hungry feeling is just with me all the time.

I’m hoping that once my ride is over and I can find more time for yoga, and more time for walking and make riding my bike more about enjoyment then training this hunger will subside. Personally I think I’m eating too much but my trainer says not to worry about it right now and let my body go through the motions of whatever it needs and wants. The trick is going to be to make sure when I get hungry I stay really clean with my food. I have added more carbs back into my diet and I’m starting my day with a big bowl of oatmeal consisting of thick cut oats, chia seeds, flax seed, pecans, coconut oil and apple. I was drinking down smoothies each morning but my stomach really needed to digest the food and I think my body needs the carbs after my morning workout. My lunch time work out is little different because although it is still intense I don’t eat carbs even clean ones later in the day so that is a big protein, fat lunch and veges as my carbs. It is double servings of food however so I know I’m taking in a lot more calories but I’m really trying not to focus on calories and continue to focus on how I feel.

That is catch 22, my body feels one way, my mind wants to ignore what the body feels and eat less and my mind wants to jump on the scale and scrutinize my decisions but I’m trying to let my body win this battle not my brain. My brain will forever want less even though it needs more and I need to ignore those thoughts as they enter in. I want my brain to quiet down, let me work through this and then if I need to make adjustments make them without judgment. How did I become so judgmental of myself? For the most part I think I make good, rational decisions that I can live with and why my brain wants to scrutinize my eating seems so ridiculous but it is years of my own doing. I am trying to change that feel the hunger, recognize the type of hunger and deal with the hunger. This is not easy.

Follow

Get every new post delivered to your Inbox.

Join 150 other followers