After 245 days I had a flare, therefore, I go back to zero. However, I had a couple of signs that it was coming and it came and went quicker than normal so there are some positive aspects to this flare. Last week I was feeling very out of sorts, my mind wasn’t quite right and I was forgetting stuff. My fatigue level was way high and all the while I’m think that this is “normal” life stuff. For most people might be normal life stuff, but for me it is much more and I should have known that I was on the verge of a flare. Not that I would have done much at that point but to recognize it would have been good. On Saturday my fatigue level was overwhelming and although I taught my yoga class and took a couple of yoga classes I didn’t have a lot of energy for anything else that day. Again, I should have recognized but didn’t take notice. Sunday I woke up and my wrists, elbows and shoulders were so sore. I really thought that I had over done my yoga work. I do hours upon hours of yoga, why I thought that is still unclear to me but that was the biggest tell I had that I was going to go into flare.
I went to my yoga class, taught the class and as the group was moving to savassana I realized I was moving into flare. I have a short amount of time before it becomes very obvious to people that something is wrong so I ended class and got into my car. I took deep breaths the whole way home and when I got home my body went into full flare. I had the shakes, the pain, and the illness that comes with a flare so I climbed into bed and went to sleep. During sleep my body is able to recover so I after several hours of sleep I woke feeling much better. The thing that I need to remember about my flares is that they are fast. They are painful but they are fast. If I were to get the flu or a cold I could be down for couple days or even several days but with the flares I’m down for several hours. My body was not able to do anything Sunday except for rest and although I was able to eat and drink that was all I had. However, the next morning I woke up feeling great. I was able to do a gentle walk and although I’m still dealing with fatigue my body feels much better.
The thing I learn with each flare is that I have signs if I would just listen and my flares come on fast but leave quickly. My flares knock me down but then I’m able to get right back up and do what I need to do. The other thing is that my flare was on a Sunday so it doesn’t really interrupt my life except for that important time with my husband. He is very understanding and realizes that this too will pass and we will have next weekend to enjoy each other. We had 35 weekends to spend together flare-up free and I’m hoping that this day starts my journey to another 35 weekends or even longer.
I woke up this morning and realized I’m at 225 days without a flare so this is a great start to the new year. We don’t have to wait until New Year’s Day to make changes in our lives or set goals but it seems easier to do so when it seems the slate has been cleaned and the new year ahead is full of opportunities. I started my day by teaching a yoga class and I started by saying I think we should ease into the new year and what I heard back was no bring it. Most people are tired New Year’s Day, most people haven’t been sleeping enough, eating out of the ordinary, drinking more than they normally would and we should probably all let our bodies rest but instead we wake up on the first day of the new year and want to be challenged. Whether in a spin class, a new facebook challenge, or even a yoga class. We want that push to get us started in the new year right. We all look for this, but what is the drive? I don’t have the answer to this question as I’m still trying to figure out what drives me to do all I do, and try all the things I try. The people around me wonder where my energy comes from, where my drive comes from and what my boundary is. The only thing I know for certain is that I do as much as I can on days that I feel good because it isn’t every day that my body is running at 85% and never at 100% these days, but I do what I do because I can. If you have been with me since the beginning there was a time when I couldn’t walk and with therapy walking 2000 steps a day was a chore and took all day, now I hit 10,000 steps usually by noon, because my legs work, because my body functions. I do hours of yoga because I have the strength in my arms, elbows and wrists. I do what I do because I have worked to get here and part of me is afraid it could be taken away at any moment. I live in the now as best as I can, but there is a lingering fear that my body could and probably will some day long from now not do what it does today. I believe I will always be able to walk and I will always be able to do yoga. That is where I put my focus, but I’m crazy about spinning. I’m crazy about trying new things, and I’m crazy about succeeding.
I don’t know what this New Year will bring, but I am open to all the events that come my way. I know I will not like everything that I’m faced with this year, but I will face anything with calm, peace and grace. I will continue to encourage all of my yoga students to do the same and challenge them as they need and let them rest when they must without judgment. Happy New Year to you all and hope your year brings you health, happiness, and peace and may this year bring you everything you need.
My body was giving me all kinds of signs to slow down and rest, but dealing with life stuff was making it hard to take the time needed to actually listen and do something. This past weekend I didn’t flare but my body was very stiff and my hands were so sore and swollen that when my husband asked if we could go golfing on Saturday, I literally couldn’t hold my golf club. I walked beside him in the sunshine and fresh air stretching out my sore hips and knees but a golf course on Saturday doesn’t lead to power walking, more a stroll around the course hitting the ball and waiting for the team up ahead. I actually enjoy walking golf courses more than I enjoy playing golf courses. If only early mornings they would allow people to walk them for exercise, that would be great.
The following day we decided to go hiking which is a great way to be outside and together and I didn’t need my hands at all. Some hikes require walking poles but this one was just a leisurely walk in the woods and very relaxing. After a weekend of just taking it easy, no moving boxes or stressing about what happens next my body was able to find that calm zone again. I do feel that there might be a flare right around the corner so this is where I really have to listen, take notice and try to be as kind to myself as possible.
I’m teaching a lot of yoga classes the next few months but that doesn’t mean I have to do all the classes and my plan is to just use verbal cues for half the classes each week and then practice the other half. I’m in a studio where it is preferred that we do the poses with our students, but each studio, each principal, each instructor is very different and some teacher trainings prefer to not have their instructors practice. Although some students feel it puts the instructor at a power level and there is no power struggles in yoga, at least not for me.
I will explain to the practitioners before each class if I’m not practicing and why as to make sure that there are no triggers for anyone. Yoga is very personal and people come to their mats and our studio for all kinds of reasons. As an instructor my soul purpose is to guide them and allow them a place to explore their own space. I’m brought to my mat each day for different reasons as well and every time I climb on my mat I am deciding if I’m restoring, powering or finding a balance between the two. My favorite class that I’m teaching right now is restorative yoga and although many people come to their mats to sweat, work and release stress, sometimes people need to be reminded that rest and restoring is very important too. I’m finding that my class is growing in numbers since the word is out that people should slow down and the let body heal between their more intense sessions.
I’m in rest mode and trying to keep a flare out of my way but also know that if I do have a flare I can come out of them quickly as well. Life is about balance and even when you think you have found it, it is time to look again.
I did my first float last night and wanted to describe in detail what that experience was like for me. First, let me start by discussing what floating is and how I got interested in the first place. I have been listening to a lot of podcasts over the years and the term floating comes up quite a bit. Float tanks are sensory reduction tanks in which you climb into a pod (or something similar) that has 12 inches of water and 1200 lbs. of Epsom salt. The idea is that you float on your back and feel completely weightless as though you are floating in space. It is typically dark and quiet to let your mind and body completely relax. I will back up a little bit more for a moment. Years ago my doctor had mentioned that when my joints and body were really stiff, sore and swollen that taking baths with Epsom salt would be beneficial since Epsom is so good for arthritic pain. The caveat is that all that salt is not necessarily great for septic systems so I used this technique when my body really needed. The idea that these tanks have 1200 lbs. of Epsom salt make them wonderful for pain in general, back pain, neck pain, joint pain, muscle soreness and other types of pain.
I did some research and found a place near my home to try out a tank. They have pods or a room. Last night was my first visit but won’t be my last. I was in a pod and will try a room next time. My experience starts with a lovely couple at the front desk that are more than welcoming and really take time with me since this is my first visit. There is a short video you watch and waiver to sign. They explain to me that I can choose a light color and music track. I have also thought that you enter these things in the pitch black and complete silence. They explain that I can turn this all off but for the first visit I may want light, music, or both. They take me to my room and inside the room is a shower, pod and filtration system. They explain that I will need to shower first to ensure that I do not have any makeup, location, perfume or anything else on my body or hair and the I climb into the pod.
There is a huge lid that I closed when I climb in and the pod is big enough to sit up in so it is not like a tanning bed which I originally had thought. I pull the lid down and lie back. I instantly start to float and try to relax. My body did not relax at first and felt my neck and back tighten up as though I had to keep myself a float instead of just letting go and letting the water hold me. If you have ever tried to totally relax in a savanssana yoga pose it is very difficult and this was too. I turned off the light and music and realize it was pitch black and completely silent. I got a little un-easy so I turned on the music but left the light off. You are in there for 90 minutes but obviously you have no idea how long you have been in there until the voice tells you that your float is complete. I did eventually start to relax and even dosed off for a brief moment but I don’t think I could actually sleep in the pod. At some moment in my float my body felt cold and I got distracted so I tried to warm back up but instead decided to cut my float short and jump in the hot shower. I turned back on my light and sat up in the pod. I did some stretches then climbed out to a hot shower. As it turns out I only cut my float short by 5 minutes so for 85 minutes things were comfortable and relaxing.
I explained to the couple that I got cold and they said they would make a note on my account for a little warmer water and also suggested that I try the room next time since it stays a little warmer naturally. Also, I’ll be careful next time to not take a warm shower but try and endure a cold shower so the water will feel warmer as well. My body runs cold and with my Raynaud’s I really don’t like feeling cold, but I did like the experience enough to try it again and see how I do.
When I went in my hips and lower back were very sore. I have been limping just slightly due to hip pain I have encountered since our move. I think hauling heavy boxes, walking lots of stairs and not being able to really rest and relax have caused my body pain and fatigue. When I left the float place my body felt great and I slept really well. I woke up this morning feeling really good as well, and then headed out for my walk. By the time I had finished my walk, my hips were hurting again and I had that slight limp. I need to watch this and try and fix it and just perhaps floating, massage, yoga and general rest are just what I need.
I realized last night that it has been an entire month since I sent out a blog post and honestly last night was the first time I even thought about it. This crazy thing called life has gotten in the way. I don’t mean this in a negative way because even when things are good, life can get in the way. My husband and I are making a move after 17 years and you just realize how much work is involved. My body and mind are not able to rest even for a minute these days but because there is always so much to think about, to do, to discuss and to re-evaluate.
This morning was my first time back to weight training in over a month and half. I figured I was getting my weight training from packing boxes and moving them to storage, but this morning I was reminded that when you don’t use your muscles they will fatigue incredibly quickly. It won’t take long for the muscle memory to return and I feel strong again and honestly I haven’t run into any boxes I couldn’t lift and haul so I think my strength is there I’m just using it differently. I also decreased my prednisone to 4.5mg about 3 weeks ago. I wasn’t sure if with the extra fatigue and stress my body would allow the switch from 5 to 4.5 but I can say that things are going pretty well with. My doctor wanted me to start to ween off since I have been on the Cellcept now for 3 months. He is hurrying me to get off of it but I figured I would try a small dose reduction and try another one after we move if my body feels ready.
I did some meditating this morning for the first time since we started this whole life change back in April. Everyone says that this is the time to meditate the most but I was feeling like things had to give, I had to give up many things and that was one of them. I also started walking every morning to conserve some energy to get me through my work days and do yoga whenever I’m teaching but I don’t have my own practice right now. We are about 2 weeks from moving in our new home, starting our new life and making new memories in a new place and I’m hoping that once we get moved in and settled we will find that tranquility life I crave. I wouldn’t change what is happening right now in our lives I just wish we were at the end of this journey. Every journey has its struggles and challenges and also its joyous events but all these things cause stress and as we know stress is my biggest trigger and usually the biggest trigger for most of us with autoimmune diseases. I am at 62 days without a flare today and feeling really good about that. My husband is constantly reminding me to breath and rest but my hope is to finally find some real sleep in my very near future.
I am too close to the situation to see when I really need to take a breath and relax . I give people advice all the time but it is very hard to take my own advice. My plan for the next couple of weeks is to get back to my regular routine, walking, my personal yoga practice, weight training and meditation so this morning I was able to get my weight training session and meditation session in. That felt really good.
I went 300 days without a flare and on day 301 I went back to zero. I got lulled into this false sense of security that I was on a new medication and perhaps my flares were over. I need to remember it is not a matter of “If, but when” and be ready for them. If they come once a year that is far better than every 60-90 days. I have hope that I can get more than 300 days next time. So, everyone asks me what can I do differently or what brought this flare on and what can I do next time. My husband and I are in the middle of selling our house and building a new one. We are doing this to be closer to family, to shorten our commutes and to make the quality of our lives better in our “middle years” but the stress that surrounds this endeavor is overwhelming and stressful to say the least. I’m not 20 building a house like I was the first time I did this and I also didn’t have MCTD the first time I built a house so I knew this year in general was going to wear me down.
Friday night we were sitting on the couch talking and discussing our plans for the weekend and I started to smell gas. My husband said well you are going to flare so we have to rethink the plans for the weekend. He reminded me that I smelled gas the last time I had a flare. I had to look back in my journal and sure enough at day 285 I smelled gas and flared the next day taking me back to zero. Smelling gas is a sign so now I know what to look for but what I do about it I’m still unsure.
I woke up Saturday morning and thought I feel ok and went to teach my yoga class thinking I had either beat the flare or it would come on Sunday. I got to class and in the warm-up my body started to stiffen, and the shakes came and the sore throat was so severe. I had 60 minutes to finish this class get in my car and home to bed. I finished my class, called my husband and he got the heating pad ready, fluids ready and was there to greet me to take me to bed. The fever came on and the pain was so unbearable. I ended up finally falling asleep and sleeping soundly for several hours. When I woke I felt mildly better but still as though I was hit by a huge truck. The rest of the day was spent drinking fluids and falling in and out of sleep.
However, Sunday I woke up as though nothing had even happened so I was back to day 1 and went to my yoga class to teach a full on class with no worries. I did take it easy the rest of the day to ensure that truly got my strength back but I felt so much better. Today I am back to my exercise routine and back to eating lots of food again and feeling great. Now my job is to take the next 300 days to research and see what I can do when I smell gas to try and either prolong the flare or just not have a flare. I don’t exactly know where to start but I have some time to figure it out.
Just another couple of days until Christmas and truly my body is feeling the effects of lots of eating, chatting and being off schedule. I am ready to have the holidays come and go so I can get back to my regular routine. As I have written in many past blogs I do not partake in the alcoholic beverages since it really can put me into flare quickly and without much effort. I am 178 days without a flare and not about to get one now when my body is already tired and teetering on the edge of exhaustion. However, I have been walking more do try and combat the terrible eating I’m doing. Yes I’m keeping it gluten free but not sugar free and it has really worn me down. My yoga practice is great and I have also been able to find myself in the Bikram studio for some warmth so I’m happy with the way my body is performing just wish I wasn’t so tired.
Weekly stats – 97,725
Daily – 13,104
Miles – 36.46
Floors – 141
Hope you all enjoy a safe holiday season and that your bodies are holding up