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.
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.
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.
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!!
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.
Today is the beginning of a new month and a spring month at that. As of today I am at 303 days without a flare and this is truly the longest I have ever gone. I never thought I would get to 300 days but here I am and trying to finish out the year flare-up free if at all possible. My body has been so good to me for 303 days other than the parasite a few weeks ago but everyone has their down moment. I have been training hard for my bike ride coming up in 39 days and I just hope I get through this ride successfully.
I figured on day 300 of being flare-up free I would try and decrease my prednisone again. I try to decrease every once in a while and I was feeling so good that I didn’t dare try but now I feel like I really need to try just to see if my body can handle the change. If I can remain flare-up free and decrease a medication that is truly moving in the right direction. I have been being careful with my food other than the other day when I did just indulge in carbs galore and I think my body was really wanting and maybe needing them but now I’m back into training gear and watching closely my diet and sleep.
Once the ride is behind me I can focus on my yoga practice. This is going to be a bitter sweet challenge for me because after 8 years of a regular Bikram practice I am turning to a regular vinyasa practice for a year. I need a break from Bikram and although I love the heat I don’t want the commitment of 90 minutes every time with a much needed shower every single session. With a regular vinyasa flow I can jump into a 60 minute or 90 minute class and continue on with my day. I have found a studio near my home which will allow me to ride my bike to class each day and they offer enough classes during the week to give me a regular 5 day a week practice which is really what I’m lacking in my Bikram practice. For many years I had been going to Bikram several times a week and for a year almost every day but for the last 8 months my Bikram sessions have gone to twice a week and even that has been hard to keep on a regular basis. It is time to incorporate yoga back into my life on a daily or at least regular basis and I can commit to a vinyasa class easier than a Bikram class right now.
I already miss my Bikram ladies and I haven’t even left yet but I know that our paths will cross elsewhere and I know that my Bikram practice isn’t over completely just for a year while I try new things like cycling and golf. I’m looking forward to spring really finding its way to Maine so we can go golfing. Right now we are scheduled to take my mom golfing for Mother’s Day but there is no guarantee that the weather in Maine will be nice that early in the season. I will do anything for my mother however so even playing in the mud sounds fun.
Today is 266 days of being flare-up free and now I’m really starting to think when will it come? Some might think that at this point I just should think it won’t happen again but my brain is going in a completely different direction. The other day I was dealing with a high level of fatigue and thought that was my first sign of flare, but not true. After my battle with fatigue I went to Bikram and felt a little dizzy after coming out of a pose where my head was below my heart. That was a first so again I thought; ok this is the beginning, but no not true. Yesterday I went to my weight training session and worked out hard with some serious heart pumping weight training and heavy weight so I was worried about being dizzy as well as what my body would do after. Today I woke up very sore but again no flare. I just finished my Insanity Class and although I was utterly exhausted and sweaty I felt really great. So why is my brain thinking the worst? I honestly think because I have not come to accept that my MCTD can truly take a back seat in my life.
For the last 10 years although I don’t dwell on it and I don’t let it stop me from doing what I would like to do, it has always been at the forefront of every decision I make. I chose to make decisions in my life based on feeling good or not and if I might not feel good for days after. In the past if I was completely exhausted I would shut down and rest, now I realize I can be exhausted while staying connected to family and my husband but modify my rest with fun ratio. For Instance, although I really wanted to stay home and rest on Sunday in the past I would have just said no my health comes first and although my health is still important to me, I went with my family and husband out but I just sat and rested while with them. I did sleep so well that night and probably better than if I would have taken a nap during the day.
I still have to listen to my body as everyone does but I don’t have pretend I’m the delicate flower my husband thinks I am. I am stronger than ever before and more determined to put this MCTD in remission. From the beginning of my journals I wanted to be able to say that my MCTD was in remission. Technically I don’t know how long I would have to go without a flare to be considered in remission and considering I still take all my medications daily maybe that keeps me out of the remission bucket but I do know that I feel great, I haven’t flared, and I’m trying new activities all the time with my new found strength.