Long, cold, myositis winter: The realities of living with myositis and germs

Viruses become personified. I see them as mean little soldiers standing up on door knobs ready to attack me. I watch them float through the air with a flashing bow and arrow pointed at me when anyone coughs or sneezes.4 min


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Long cold myositis winter, germs

The typical drugs used to control myositis lower the immune system to make it stop attacking the patient’s own body: steroids, Methotrexate, Cellcept, Imuran, Tacrolimus, Plaquenil, Rituxan, as well as others, also impair the body’s ability to fight viruses and bacteria that lead to respiratory illness (or other acute illnesses). That’s why we are “immune suppressed” when on these specific medications.

My #MyositisLIFE fluctuates with the seasons. Summer is difficult because of a tendency to over-heat, humidity that makes breathing difficult, and sun intolerance from medications and sensitive skin that lead to easily burned skin. Spring and fall give me sweet relief, but living in the Midwest we have about three hours of the good seasons!

Viruses become personified. I see them as mean little soldiers standing up on door knobs ready to attack me. I watch them float through the air with a flashing bow and arrow pointed at me when anyone coughs or sneezes.

I dread winter for many reasons: my Raynaud’s gets worse, I’m cold down to my bones and unable to get warm, and then, there are the germs. Being immune suppressed for so many years has made me become very aware of anyone displaying the tiniest symptom of a cold or flu. Unfortunately, no matter how hard people try to keep their germs away from me, sometimes they are contagious even before they know they, themselves, are sick.

Viruses become personified. I see them as mean little soldiers standing up on door knobs ready to attack me. I watch them float through the air with a flashing bow and arrow pointed at me when anyone coughs or sneezes. Sanitizer and hot water with soap become my best friends, like my own personal Pac-men and Pac-women ready to dispose of the germs on contact.

Despite how silly all of these images sound, I’m really not being irrational. When you are dealing with an autoimmune disease, like myositis, and get an additional infection, life is disrupted more than the typical cold or flu patient. It can take longer to get well (remember the immune system was suppressed to begin with, which is probably why we got so sick from the germ/virus/bacteria), we can experience an increase in myositis symptoms as our immune system is required to do its job. The difference is that we have the added danger of a potential flare of the immune system going rogue and attacking our own bodies again, which is scary, because we spend the majority of our lives trying to turn down our immune systems. This is doubly concerning if we had the myositis managed before the germ came along, because we don’t want to have to start that process of harnessing it all over again.

Myositis patients, donate plasma

Eleven days ago, I got a “tickle” in my throat. Two days later, my nose was congested. Even though I had my subcutaneous immunoglobulin (SubQIG) infusion within that time period, which I thought would stop any infection from progressing. Immune Globulin is an infusion of the immune cells of hundreds, sometimes thousands, of other people and replaces or assists your immune system. They don’t know exactly why it helps autoimmune patients, but somehow it turns off or lowers the autoimmune response in many patients. Anyway, two days later, I was hit with a cough, sinus pressure, and all-over-body-weakness, eye pain, and light sensitivity of a full-blown sinus infection. I saw the doctor and was immediately started on a strong antibiotic and other medications for a sinus infection. Luckily, doctors don’t hesitate to act when I get an infection because of my immune suppression, knowing that waiting can cause worse conditions.

I’m taking my last dose of antibiotics today, and I’m not all the way better. I still don’t have a voice and I’m still coughing and congested. This is often the way of healing with immune suppression. We get sick differently than others, and we take longer to get better. What may take 2-3 days for my husband and daughter to get over takes me weeks. Also, I ache all over. I haven’t been sleeping well, the one thing, frustratingly, that I know I need. I feel weaker. I’m tired, I hurt, and I just want to feel better.

These increased myositis-like symptoms could all have to do with the sinus infection, or they could indicate that my myositis is worsening or flaring. Since, at my rheumatologist’s ongoing direction, I cannot take my methotrexate shot when I have a cough, I held my methotrexate this week and will not restart it until my cough is gone.

But there is always a fear that even the shortest break in this important medication will alter my disease-management.

I had chest x-rays which showed that I am clear of pneumonia, so as soon as I stop coughing I know I can re-start it. (*see your own doctor for specific instructions on stopping any systemic medication.) But there is always a fear that even the shortest break in this important medication will alter my disease-management. That added to the intentional activating of my immune system with the antibiotic, makes having an infection all the more nerve-wracking.

The next time you have a cold, the flu, a stomach bug, a sinus infection, or any other kind of virus/bacterial infection…give yourself a break, know that having myositis and dealing with acute illness is hard. Realize that your body needs some extra time and tender care. It needs rest. It needs you to listen to your doctor. And, unfortunately, you may take longer to recover than the average person. Pick out a good movie, binge a good TV show, curl up with a soft blanket, cuddle with your pet, and whatever creature comforts you can. Sometimes #MyositisLIFE means accepting that you just need to rest.


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Emily Filmore

Founding Director of Myositis Support and Understanding, current Board Advisor.

Author of multiple books about conscious living, including The Marvelous Transformation: Living Well with Autoimmune Disease.  

 

https://www.amazon.com/gp/aw/d/1937612872/ref=tmm_pap_title_0?ie=UTF8&qid=1567860027&sr=8-2

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