Category Archives: Flare-up

FELL OFF THE EDGE

I fell off the edge of a flare into full blown flare.  It was nearly 290 days but unfortunately I go back to zero and start over. I am not at my base line yet and I know I have to be very kind to myself as finding base line again will be difficult and it may be different.  It seems every base line changes from time to time.  I did increase my prednisone to try and help the symptoms and feel better but then I have to come back down off of it which is challenging for my body.  This body needs things right all the time and I have not been handling my stress and work life very well.  Is this my trigger? Is travel my trigger?  Is adding hours of yoga to an already full day my trigger?  I don’t know what my trigger or triggers are but I do know that I am starting over and have to take it 1 day at a time again.

Truth is, I feel completely bummed by it.  I forget sometimes that I even have MCTD until I am quickly reminded and my body decides that now is the time to stop react and remind me to take it easy and get things under control. Until I find this control I will be resting, walking and doing my yoga.  Speaking of walking, I also have my stats for the week

Total steps 90,025

Daily 13,146

Miles 35.32

Floors 173

AMAZING ACHIEVEMENTS

I am fortunate that I am still amazed by my body and I don’t say this in an arrogant or conceited way but really in an amazement way. Since the day I woke up in May of 2003 and literally couldn’t walk I have grown stronger, more dedicated to my health and wellbeing and pushed my body to incredible limits when I could. I would also struggle a lot with “I can’t do that” moments when the truth was I didn’t know if I could or couldn’t. It was a defense mechanism that I used because my body has failed me many times in the past and I didn’t feel confident in it. I would amaze myself with different challenges and goals but in the back of my mind I always had this unsettled feeling that my body would once again fail me and unfortunately it did in the form of flares. I would have my flare, move on, and start back at base-line, and work my way back up until my next flare always wondering when that flare might come. Never really believing it won’t come. I still don’t believe it won’t come and although I don’t prepare so much for the flare I’m just more open to it coming and going.

As many of you have read I’m truly focused on my yoga and practice hours upon hours a week. I’m working on my teacher training, I’m also just working toward yoga for life but most recently I’m working toward a yogathon which takes place this Sunday at Gillette Stadium (Our NE Patriots Football home) and I will be doing yoga all day. I love the aspect of doing yoga all day and have not worried once about whether my body would hold up until about a week ago when during a long session of yoga my shoulders got incredibly fatigued from chaturanga dandasana and I got that aching feeling as to whether my body was once again going to fail me.

Since I have started a daily meditation practice I have been using my meditation as a way to make peace with my body and let go of some of these uncertain feelings I have and be proud of the body I have. This week I have literally done back to back sessions of yoga and increased my hours upon hours to (hours, upon hours, upon hours) of yoga this week getting ready and training for Sunday. I woke up this morning thinking my body truly rocks. I am truly proud of what I have put this body through for the last 44 days training for this yogathon and so very much looking forward to how it performs on Sunday. I’m proud that it is strong and that my conditioning is good. In my meditation I allow myself to have thoughts of flare and then I disconnect from those thoughts. Meditation is not about stopping the thoughts but letting them come and go and disconnecting from them.

I still don’t know what the future holds for this body of mine and living with MCTD but I do feel very capable and able to ask it to do things that would otherwise scare me. I’m nervous for Sunday, rightfully so, but for other reasons. The crowd, the unknown, the weather, and lower on the list is whether my body will hold up. I will be doing a follow up to describe my experience and how it all went and in the mean time I still have 2 more days of training before the big day and thankful for the achievement of strength.

OVER 200 DAYS

As you most of you are aware if you have been reading my blog for any length of time I journal every day so I can keep track of how many days since my last flare. I am excited to say I am over 200 days, 202 to be exact. Granted just slightly over 200 but I made it. I wouldn’t say that every day I feel like a rock star but I for 202 days I haven’t had to nurse a flare. I feel very thankful for each and every day that passes without a flare but there are some record numbers for me and 200 is turning into a record day. I was over a year before my last one so I would very much enjoy getting to a year again. However, with MCTD and flares it is a day by day thing so I might flare tomorrow but at least I have these 202 days to fall back on and know I can get there.

To put it in perspective, I have hit being flare-up free 90 days exactly 3 times in the last 11 years, 200 days 2 times now, and 1 year or 365 days just once in 11 years. My periods of being flare-up free are increasing each time. It takes me a little longer to recover from a flare after I have one. I just have to take it day by day and not worry about when the flare comes because it isn’t a matter of “if” just “when” and when it does I will be ready to take care of myself. Recover as long as necessary and start the process all over again.

Right now it has been over 200 days since I had to recover from a flare and since so much time goes by I really don’t think about it but I notice immediately if my fatigue levels increases I treat my body with kindness. As well, with my meditation and yoga I am really able to keep my stress levels down so I know that is helping and will continue to help. I made a job change in the winter which allows me the opportunity to really leave my work at work and not bring it into our house-hold which is great for me, good my husband and allows our home to be the tranquility, safe place it needs to be. Stress is by far the number one trigger for most people because our bodies and minds can only handle so much and we tend to push further then we should so our bodies stop us by flaring, or giving us the cold or flu, or just drops us like rocks until we rest. The idea is moderate what happens every day with your body so you can recognize what it needs when it needs so we don’t flare or drop like rocks and for our super immune systems get sick if we do. I don’t tend to get sick because my immune system is so strong but it doesn’t mean my body stops me in my tracks either.

I’m still learning to read all the signs but when I was doing yoga the other day and having trouble with a posture that I could so easily do just the day before my husband commented that I am really getting in-tune with my body. I thought I was already really in-tune with my body and I might have been but he sees that knowledge growing and he sees me not reacting as though I should be able to do something but doing what I’m able right now which is very different. I’m learning, listening, recognizing, reacting, and journaling.

DETOX STRESS

We are a couple weeks into the New Year and you might find yourself saturated with the word detox. I know I am hearing that word in casual conversation, seeing posters about the newest detox, join the 14 day detox, people at the gym sipping on their juices because they are detoxing and when I hear this I don’t know what to think. As a society we spend the last part of the year abusing our bodies so we can detox them when the New Year starts. What does detox really do for the body? Is it possible that the detox itself can be stressful to the body? What constitutes a detox program and what really works? We are so focused on our goals which by the way is not a bad thing but are we willing to go to extremes and is that bad?

I bring this up because I was recently approached to try a detox program and here is my thought on the whole thing. By the way I am not looking to lose weight but like everyone I did a fair amount of abusing my body between Thanksgiving and New Year’s so my body could literally receive food at any moment without feeling hungry. In fact I laugh and say that I have not felt hunger since before Thanksgiving because there is so much food around during the holidays that I’m tasting something and never feeling hunger pangs. With that abuse comes the mind and body addiction associated with so much food and always eating. Not to mention that my sleep patterns had changed due to what I was eating and to be honest I don’t go off the rails that much but even a little can set me back.

So, on January 2 I had to make the decision to get back to regular eating and regular sleep in that order because once my eating was back to normal my sleep would follow. My exercise was a constant the whole time so I didn’t have to add that to my routine.

It only took a few days of clean eating for my sleep to go back to normal and actually make my workouts feel stronger again. My weight training sessions were stronger and my spinning was stronger. I spend a lot of time on my yoga mat but even my focus was better while I was there. Analyzing what it means to detox and looking at different programs, I did my own detox but without giving up any food. I know that many of the detox programs offer “enough calories” because you are drinking so much juice or other liquids but is that kind of detox un-necessary stress on the body? All of us are faced with stressors throughout our day and should we be adding a stress of very little food after gorging for so many weeks during the holidays? I don’t have the answers and I don’t use the word detox when I’m talking to people but I just say I got back on track right after the new year and everything is back to normal for me. At that point they can decipher what that means.

I don’t walk in anyone’s shoes but my own and each day I am trying to make my body a little stronger so I need to eat real food and honestly I eat a lot. I wouldn’t say that I have felt hunger pangs yet this year but I’m not in that constant mode of eating either. I fuel regularly and based on what my day has in store. If I know I’m going into a stressful day I try to not add that that stress by worrying about my food or lack thereof. I have cleaned my cupboards and anything I want to eat is suitable to me again. There will always be times when I will run up against temptations and wouldn’t be human if I didn’t but when I feel strong and see progress with my yoga practice and weight training abilities it sure makes those temptations less. Also those temptations have to be pretty special, but they will arise again.

You may be doing your own detox and actually feeling good so if that is the case than I urge you to do what feels right for you. If you are feeling stressed with your detox maybe rethink it as stress is a big trigger for MCTD flares and you don’t want to inadvertently cause a flare while “doing something good” for yourself. As the year moves forward it is important to take care of your mind and body and soothing your soul. Just a side note I am still meditating each and every day sometimes with success sometimes not. A reader suggested I try honest guys and I did. I would recommend them to others as well. I don’t use it regularly because I really like picking a song off of a CD and just getting lost in my breath and the music but if I need some help I will turn to them. The meditation is my 2015 commitment and one of my favorites. Every year I pick goals that require me to do more and this goal is unique in the fact that I do less. I just need to sit quietly by myself for a few minutes each day.

TIS THE SEASON FOR STRESS

First things first, here are my weekly Fitbit stats.

Total steps week = 88,338

Average daily steps = 12,620

Miles walked = 33.78

Average number of floors climbed = 130

On with the stress. Everyone looks forward to spending the holidays with loved ones, sharing food, laughing over drinks, spreading the cheer and engaging in the stories but when we are out and about it seems as though everyone is stressed.  More than just stressed they also seem incredibly tired and completely worn thin.  This is the season when we do way too much and somehow completely forget how to say no.  I bring this up because for the readers with MCTD you only have so much energy to give on any particular day so finding extra energy can be really difficult.  I know from experience that it is very hard to say no to one more get together, one more fire side chat, one more “this is really important” dinner with either friends or family and one more “I could really use your help shopping” so give yourself permission to say no.

No one wants to disappoint people on any given day but certainly no one wants to disappoint our loved ones during this season.  They have been there for you and helped you through some really challenging, scary, tough times so you feel as though you want to thank them and by doing so you end up doing too much.  Remember these very people that were there during your challenging times also realize that your bodies run out of energy very quickly and not putting yourself first could end you up very tired or even in bed with a flare.

I’m not saying use your MCTD as an excuse, but I do think that putting yourself above all others for a few moments each day to assess how are you feeling on this day, what kind of energy do you have, how much do you really have to do and how much can you actually do are very important questions to ask.

I have been living with and managing MCTD for 11 years and still after all this time I have to pick and choose the important times and yes there are times when I run myself into the ground but getting back up takes me a little bit longer so there are consequences for those actions.  My family is the last group of people who want to see me stressed, over tired and just making it through the day so they are also the first ones to give me the break of not participating and staying home to rest.  The rest of the world doesn’t even see me with an illness most of the time so when I tell them no I see the perplexed looked on their faces but I have nothing to explain or defend.

Getting to a place in your life when you can truly own your decisions and feel good about the decisions you make is unbelievable and it didn’t come to me over night. It came to with each flare and each recovery.  Although my base line is different and my endurance is better I still feel fatigue and when I do I have no one to blame but myself for not reading the signs and listening to my body the way I should.  I am going to get through this season, all the crazy hours, eating, drinking, song singing flare-up free but only because I have found my active listening skills and really worked to listen to my body and know when it is time to say No.  We believe we may miss something, but if you are in bed with a flare you are 100% certain to miss something.  Keep yourself well, forgive yourself if you over-do it and send yourself compassion if you do flare.  With each flare and recovery you will find the skills needed to read the signs and react in a way that helps your body.

The season is supposed to be fun so try to keep the stress of it down to a low roar.  Happy Holidays.

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.

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