I have limited range of motion of my elbows, ankles, hips, shoulders, fused toes and wrists, bone spurs, calcinosis and a constant all over pain rating of 3 every day. You bet I exercise, but my ability to do so did not happen over night.
Exercise was not an integral part of my life until I joined the Navy. After boot camp, I liked having a toned body and because it was part of my job, it did not take much to keep me exercising. Then I left the Navy and my diagnosis of Scleroderma happened. At first, I felt fine. Sure my hands and fingers hurt but I felt okay, but that was the calm before the storm.
When I received my diagnosis, I was a healthy 23 year old who exercised regularly, worked two jobs and a was full time nursing student. In my second year, I had to change my major because I did not feel comfortable giving care to others when I was trying to figure out how to tae care of myself. So, I changed my major to Psychology. The changes of Scleroderma had not only devastated my body, but the unseen devastation by depression was my biggest struggle. As it does for everyone, Scleroderma changes everything. I hadn’t lost my will to live, I just didn’t know what to next. I still continue to fight depression almost 20 years later. Along with my Scleroderma and Sarcoidosis I have the diagnosis of Major Depressive Disorder with Anxiety. It was depression that kept me on the couch. The pain put me their, but my depression kept me there. Eventually I became afraid of social interactions and simple chores like doing the dishes became a trigger for panic attacks.
The path of little activity started with my hands. Sure, my hands had already been bothering me but then my fingertips started leaking puss from infected Raynaud’s ulcers. I quit doing push-ups because my hands hurt, then I stopped going anywhere I didn’t have to because my hands hurt and eventually stopped exercising altogether.
Since the seventh grade, I was a proficient typist. In the Navy, I was trained to do an outrageous amount of functions per minute on a teletype. (For you Younglings, a teletype was a machine that printed messages sent from other locations) In 1995, my fingers had become so damaged, every keystroke resulted in pain as well as a trail of puss. It was disgusting. I would be sitting in class and bandages would slide of my fingers and whoever was sitting next to me got a front row seat to the grossest show on earth. Eventually, my Raynaud’s had become so severe on my right thumb , it became gangrenous. I had just started receiving Disabled Veteran’s benefits. The local hospital recommended an immediate digital sympathectomy to save my thumb after an emergency arteriogram showed the blood supply to my right thrumb was coming from retrograde blood flow from veins to my thumb. The artery to my thumb was completely closed. The muscle tissue surrounding the artery was choking the artery shut and the tissue on the tip of my thumb was dying aka, ischemic.
I attended school at Viterbo College in LaCrosse, Wisconsin. The nearest Veteran’s Hospital capable of handling my case was three hours away, in Madison. Because the condition was not life threatening, the VA would not approve the surgery recommended to be done by my local hospital. In pain, angry, full of resentment and frightened, I really did not know how to deal with this appropriatly. I had* a great friend, my room mate Heather. She was a nursing student. She drove me to the VA Hospital in Madison. My car had a manual transmission and she even took the time to learn to drive a stick shift.
Not only did Heather drive me to the VA hospital in Madison, she slept on a recliner all weekend in the room with me. She was so supportive. I mention Heather not only because she was so wonderful, I mention her because if you are a patient experiencing a mental breakdown, please be good to your supportive friends- no matter how bad you feel. Of all the things I have lost, her friendship was one of my greatest.
The mental breakdown I had needs an entire post of it’s own, but I mention it here because it’s the first one I remember. That breakdown was a symptom just as life threatening as Scleroderma. It was a symptom of depression and after my recovery, I didn’t go back to the gym.
Years went by, my disease progressed and my depression worsened. I considered vacuuming exercise. After my son was born, I was having more trouble breathing. After frequent visits to the ER and an eventual Sarciodosis diagnosis, a nurse practitioner recommended yoga. I went to my first class that same day.
My limited range of motion made me feel very self conscious. My instructor was very understanding and my classmates made me feel comfortable and welcome. It was love at first class. I wanted to make yoga part of my life. I could only attend the class once a week, so I bought a DVD. At home I used furniture to adapt my poses. I still cannot do downward facing dog, but I have my own version. The stretches and poses helped but the most important thing I learned was how to breathe. That’s right, I learned how to breathe.
After I quit exercising, I rested. A LOT. Mostly because I was avoiding social interaction, deep in the throws of depression. I would reason that I was saving my energy. Well in order to have the need to save my energy I would actually need to be doing some sort of activity. Learning yoga opened my eyes. Eventually I started going to a local yoga studio and worked one on one with my favorite Yogi. Ashley Fiala of Living Yoga in Temecula, California. I started meditating. Inhaling deeply and exhaling deeply. My pulmonary function tests began to stabilize. I have no research to prove this is causation. The fact is my breathing practices improved and my pulmonary function tests stabilized is entirely a correlation. I exercise because it makes me feel good.
My point? If you can’t get out of bed, you can still exercise your lungs. Ask your doctor for a referral to a respiratory therapist or if deep breathing exercises are for you. Once you get clearance form your doctor, try some exercises.
Here are some tips and things I do:
~ Contientious Breathing. Inhale deeply so that your stomach expands and fill your lungs to comfortable capacity. Don’t force air into your lungs. If it’s a small amount, don’t be discouraged. Just like anything, exercise gets better with practice. Then exhale until your lungs feel empty. Again, this should not hurt or be strenuous. Don’t use thnk of it as breathing, think of it as exercising your lungs and chest muscles.
~ Blow Bubbles. This is great if you have a bored child on your hands. Take out the bubble wand and soapy water and let the fun begin. If you need to be indoors, a glass of water and a straw will do the trick. Disobey everything your mom told you and blow bubbles into the water with your straw. Be creative, make it a game. My son loves doing this one with me.
~ Yoga. If you think you are ready and your doctor okays it, call local yoga studios and talk to instructors about your needs. They are problem solvers by nature and my experience with them has allowed me focus on what I CAN do. Don’t be afraid to ask questions, bring things that can help you and ask questions. Yes, I now I said ask questions twice. It’s that important.
~ Buyer Beware. If anyone offers you a cure or homeopathic remedy over the phone, thank them and hang up. Stay away from anyone who prescribes anything based on Edgar Cacey or Carolynn Main. There is no shortage of quacks out there who believe their own garbage and making money from a sick person’s desperation. I have first hand experience with Carolynn Main in 1996 who made a few thousand bucks from my search for a cause and cure. A relative sent me information about Edgar Cayce. I spoke with a “Nurse” from the Edgar Cayce foundation and none of their practices have had clinical trials. If anyone offers you a “Cure” ask for links to clinical trials. Information is always free. If they want to send you info for a small fee, hang up.
Again, before trying anything, always ask your doctor. I cannot stress that enough. These are tips and in no way are to be used as medical advice.
If you are a little more mobile, here are some great breathing exercises from our friends at LiveStrong: Breathing Exercising
I started small in 2004. It’s 2012. Now I can run a short distance, do a 60 minutespin class, a 60 minute Zumba Gold Class or Yoga. It took hard work to get here. A lot of that work consisted of hope, therapy, medication management and just plain pigheaded stubbornness. Twenty years after the onset of symptoms of a disease I thought could kill me, I’m still here and I am not going anywhere anytime soon.
*I say that all in the past tense because I was an awful friend. Granted, I had big issues to deal with but there are lines you do not cross and I did- but that’s another story for another time.