There are many days I’m cold, sometimes I think even unbearably cold but nothing could have prepared for me yesterday.  A quick little thought before I proceed, I was thinking that I’m having a hard time going to the gym and walking inside.  My favorite type of exercise these days is just a simple walk. It is not for intensity it is for my mind, body, and spirit.  The treadmill sucks the life out of me and that type of walking is not what I’m interested in.  So, I had this bright idea that I would consider year round walking outside and started to investigate how people do it. 

I fully understand that keeping warm is a must as well as making sure my feet don’t slip on the ice but I wanted to see the full regiment of what is needed for outside winter walking.  When we snowshoe I have a certain wardrobe I wear but I didn’t know if that would be for walking also since it is a bit bulky and would I be able to get around at a moderate pace in my snowshoe gear? Still working on that, but I think I may have changed my mind about outside walking based on my experience last night.

As I’m talking to my husband about walking year round and he is trying to support me with that look of you realize you have periods when there is no feeling in your fingers and toes right? He is trying to think that perhaps moving and walking around will keep the blood flowing and walking outside might be an OK thing for me to do.  Well now reality sits in because he says that I will get a chance to see how I handle under cold situations since we are going to a Patriots football game. 

We spend a week preparing, getting all my clothes ready and all my warm gear ready. My husband is busy getting himself ready too but focusing on what I need and making sure I don’t freeze.  I’m doing my walking research and seeing how many layers I need and figuring it out based on it being in the 20’s.  We knew it was starting in the 40’s with some sun but once that sun is gone the temperature will and did drop very fast.

I start with my under armour, fancy name for long johns, add a long sleeved breathable top, turtle neck, wool sweater, a huge coat and I figure my top half is set.  My legs had under armour, leggings, and pants and I had socks with sneakers.  Yes this was my downfall, I knew I needed to walk many miles yesterday and in fact took over 19k steps so my best shoes for walking are sneakers. I thought boots would keep me warmer but that they would fatigue my feet and legs and make it harder to get around. I chose the best pair of wool socks I had and went with sneakers.

I finished my fashion statement with ear warmers, gloves and mittens over my gloves with warmers inside.  I really thought I had this figured out. I did realize that walking for exercise would not be much fun in all these layers but one step at a time.  We get to the game, totally enjoying ourselves, jumping up and down and not realizing the temperature is changing. When that sun was gone everything changed.  My husband wrapped his scarf around my neck and my brother-in-law gave me his face covering gear which covered my head, mouth and nose but left my eyes exposed.  I could feel my body objecting greatly to the cold it was feeling.  The warmers were no longer keeping my hands warm and they were tingling and hurting and feet felt like they had left my body completely. 

I realized I couldn’t stand when a good play happened because the pain was running into my knees, hips and lower back and my body was loudly letting me know that what I was doing was so wrong.  After the game we needed to move, yes my legs needed to find their way under my weight and carry me down this huge stadium and out of the park to our transportation. The protesting going on in my feet, legs, knees and hip was causing me extreme pain.  I actually started to get the flare-up chills and my breathing became labored.  I couldn’t speak to anyone because I couldn’t focus on brain on what they were saying or find my own words. I knew I was going into flare and there was nothing I could do except keep going.  I couldn’t stop, I couldn’t warm up, I couldn’t think, but I could breath.  I went into the deepest breathing of my life. I almost felt like every breath I took was reassurance that I was still moving and hadn’t stopped.  My husband would tell me how far we had and said I could do it and that he was right there with me.  I held on to his strength and eventually we found warmth.  I was so happy to feel that heat.  It only took a minute for my mind calm, my deep breathing to be not so labored and my body start to relax. Within a few minutes I was right back to feeling my normal self and the best part was I didn’t actually flare.  I do realize that cold and Raynaud’s don’t mix but it is more than just purple hands and tingly feet.  There is a real connection between being cold and my body in a not good way. 

I’m not saying that I won’t figure out how to walk outside in the cold but I don’t know if the worry is worth it considering every time I get cold now I will undoubtedly worry.


5 thoughts on “THE CHILL SET IN

  1. blacklilya November 19, 2012 at 9:01 pm Reply

    So I stumbled upon your blog when I was doing a search on MCTD. Can I ask your age and when you were diagnosed? I’m 29 and I was diagnosed at 14 but they are pretty sure the disease has been active since I was 12. I have no idea how you live in such a cold climate. What you described with your body shutting down with the cold is exactly why I’ve told my hubby I have no intention of ever living outside of California for very long. I can barely stand when it is 40-50 degrees let alone colder. I wish I could do Bikram yoga, my best friend is obsessed, unfortunately I have Lupus characteristics with my MCTD so I have no tolerence for heat or cold. What do you define as a flare up because I’m constantly in pain and have varying swelling, fatigue and naseous? Yet I haven’t been as bad as I was in the first two years I was diagnosed. Back then I had days I couldn’t get out of bed. Anyway I wanted to say you seem to have a good hold on what you need to do to keep healthy and are an insperation. May good health and fortune grace you.

    • mevsmctd November 19, 2012 at 10:33 pm Reply

      Thank you for taking time to read my blog. I just turned 40 and I was diagnosed at age 30. I have made managing my MCTD a career and tried everything you can possibly imagine. My flare-ups have changed in frequency over the last several years. When I first found out about my MCTD I was having flares multiple times a month. A flare for me is chills, nauseous, pain so bad I can barely walk and need bed rest. Sleep for me heals my body and my flares last several hours with lasting fatigue for another day or so. As far as base line, that has been a changing measure for me. I have lived with a certain level of pain in my knees and hips and swelling with stiffness and soreness in my hands but these are things I function every day with and although I don’t ignore it I have learned to lived with it.

      I’m currently changing my eating habits and exercise habits as well as increasing my good sleep so it is true that over that last couple of months my base line has changed. My fingers are swollen when it is very cold and my hips and knees ache in the cold as well but it is not a constant daily pain anymore. Heat is my friend and cold is not but I have chosen my life in Maine so I must incorporate cold into that life. I use Bikram and sauna therapy as part of my regiment and increase my physical therapy in the winter time as well.

      Flares can be triggered by extreme heat or cold conditions and I have had flares during my Bikram practice but not for a very long time. Whatever you choose to do for your body, mind and spirit is exactly what you should be doing. You know best what you need. I wish you luck with your journey.

      • Aimee November 25, 2012 at 11:03 pm

        Very true. Every case that I’ve read of is different. I’m the youngest I know of to have developed it and going through hormone changes during puberty created all sorts of problems. Once I hit adulthood things calmed down and I haven’t had many dibiilitating days. I just try to eat healthy and stay active, which isn’t hard with a three year old.

  2. Sal November 24, 2012 at 1:52 pm Reply

    Hi Nicole , I was very interested to read your blog re walking all year round, this is something I do. I live in Ireland so the temperature rarely gets below -6 Celsius I think that’s about 20 in Fahrenheit . I have a brother who lives in the USA and he tells me it’s a very different type of cold, whereas we have a damp cold climate it appears to be a dryer type cold in your part of the world so not sure if that makes a difference. Anyway my regime in this weather includes base layer of under armour 2nd breathable layer , fleece top and light weight down jacket on top. Fleece beanie hat, fleece neck warmer. Under armour leggings and fleece line trousers. I too suffer from raynauds so hands and feet are problematic, I use hand warders inside a special type of glove intended for golfers which I find effective. On feet I wear thick hiking socks and sketchers lite hiking boots. I think the reason you suffered as you did at the game was because you were sitting , I know I had a similar experience a couple of weeks ago. I find once I keep moving at a brisk pace I tolerate the cold well. That said I did suffer severe heal blisters a couple of weeks ago which I did not even feel until I was well warmed up so as you can see I’m no expert. It’s trial and error but I find moving as quickly as possible to be the best. Wishing you well.


    • mevsmctd November 25, 2012 at 10:42 pm Reply

      Thank you for this information. I have not given up on my idea to walk year round but I realize I need to be smart about it. I too believe sitting was my biggest downfall and while walking I can keep the blood flowing. I’m in the process of researching all my options and seeing what I can do. I think with time and great preparations I can get this body cold adapted. That is my hope anyway. Keep walking and enjoying those beautiful rolling hills of Ireland.

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