I’ve been doing a lot of thinking about exercise lately. And about having an autoimmune illness. No surprise considering I have been back in the gym for about two weeks now. I cannot lie; it has been difficult at times. Before the whole Guillain-Barre incident this past January, I was, in between Sjogren’s flare ups, getting some exercise by walking my dog. I was also doing some strength training for a few months. However things are different now. Since I lost so much of my abilities to function with the Guillain-Barre incident, being able to move, walk, and just get out of bed has taken on a whole new meaning. I have definitely had to work harder at exercising in order to regain my strength, balance, and functioning.
With the help of a staff person at my gym and more importantly, with the help of my physical therapist, we have come up with a routine combining resistance work, weight lifting, and cardiovascular work in an effort to continue building up my strength, stamina, and to help accomplish my weight loss goals. The reason why I say it has been difficult is because I have so many factors working against me in my endeavor to get healthier and stronger. I am not exactly what you would call an athlete and never have been. I have the Sjogren’s syndrome symptoms to deal with as well as issues with the nerves and muscles in my head and neck. And let us not forget that I am weaning down on my prednisone which tends to aggravate my joint pain, stiffness, and a host of other issues.
Many times I am sleep deprived either due to pain issues and medications. Many times I am unmotivated to exercise because I am just fed up with always struggling to get through the day. Many times I don’t want to get any exercise because I know for a fact that it is likely I will be very sore the next day. And really, I already have enough pain and fatigue issues to deal with.
But I do it anyways.
I have found that all of those above reasons I listed for not wanting to exercise are one thing: excuses.
The excuses can go on and on. Poor me, I cannot exercise because I am in pain. Or because I have this terrible chronic illness. I am too tired. I can’t use a a certain piece of equipment because I am too fat or too uncoordinated. I cannot exercise because I need the energy to do other things today.
I will be the first to admit that I have had to work much harder than I would have liked to work this time around in order to pace myself through the week so that I can get some type of exercise on an almost daily basis. Sometimes it has meant giving up something social I really wanted to do that day or not having my home as clean as I would like it. It has been a matter of prioritizing. I do this prioritizing because I strongly feel that exercise is going to be one of the key factors in helping me get well or at the very least, hopefully help decrease the incidence of further Sjogren’s complications.
The results I have seen, first in the seven weeks of physical therapy I have had and more recently in the gym, have shown me how essential getting exercise is in the management of my autoimmune illness. Yes, I have been dealing with a lot of muscle soreness from using muscles that I didn’t know I had. And I am absolutely useless after about 4pm as I am so exhausted from the exercise that I can barely function. But guess what? When my Sjogren’s is in full gear, I am pretty much useless after 12 or 1pm anyways. Far as I see it, I am ahead of the game right now.
So the benefits I have seen so far is the quick recovery I have made from the Guillain-Barre. Until that 4pm time, my energy level has increased dramatically during the day which overall, has improved my quality of life. The withdrawal symptoms from the prednisone have been much better than usual although admittedly, I am not sure if this is due just to the exercise or to my dietary changes as well. The biggest change however has probably been in my stress level and overall well being. I try to do my work outs in the morning when I tend to have the most energy. I swear that I am getting high on the endorphins.
I think that oftentimes those of use who have an autoimmune illness or any other chronic condition feel that we cannot exercise as it will make us worse. Or that we are too sick to do something. And there are those rare people, such as quadriplegics, who truly cannot do any exercise on their own. However that is not the case for most of us.
It doesn’t have to be all or nothing and there have been many studies proving the benefit of exercise on pain and fatigue; as well as the depression and anxiety that often accompany various chronic illnesses. There are so many different ways to exercise that do not have impact on our joints such as swimming or resistance exercises. You would not even believe the bicep muscles I have developed just from doing some simple exercises at home using an exercise ball and a resistance band. I guess the point is to just do something. Anything. Whatever you are capable of doing is better than nothing at all. And who knows, you may even surprise yourself.
Photo: Courtesy of Chuck Myers
I try to walk every single day to keep going. I so agree that trying to keep moving is great! I hope you can keep it up and I really hope it strengthens your body to help fight off these autoimmune illnesses.
Thanks Deb, I hope so too!
I know I dont post a lot about my auto immune stuff – my love/hate relationship with prednisone and what it takes to get through a day sometimes caring for 3 small kids and 2 eldery parents. Some days after not sleeping more than 2 hours in a night, I get up in tears never knowing how I am going to make it through the day – 3 kids, meals, cooking, cleaning, shopping, laundry, homework, sports activities – to only have to follow my mother around all night and wait up for a night nurse at 11pm. It can be down right depressing – especially when every minute of every day – all you can think about is how much pain you are in and how exhausted you are. If only I could take a nap – stop for an hour – catch up on sleep – ahhhhhh.Exercise has changed my life in so many ways. I literally put it on my schedule every day – just like an appointment. Some days I have great days at the gym – and some days, I leave classes in tears from the pain. But none-the-less I go, and I do what I can. Sometimes I do a lot – and sometimes not so much. But no matter what I accomlpish when I am there, it makes me happy, gets me out of a funk, physically makes me feel so much better, and instills in me the knowledge that I am NOT giving up, and I am NOT going to let this auto immune illness win. And the days I most don't want to do it – are the days I know I most NEED it.Christine, here is to a year from now, when we can look back and say, "hell ya, I did that"!!!
Oh man. I don't know where to start except to say: I hope I surprise myself.
"It doesn't have to be all or nothing."….one of the most difficult things for me to grasp since becoming ill. I spent my life as a runner – mostly marathons – so trying to come to a place of acceptance and compassion for where I am at in life has been quite difficult in regards to exercising. Time has been a great help, as I find that as the years pass I let go of old expectations and hold myself in a much gentler place.
So good to hear how well you are doing!!!
I tend to do the "all or nothing" thing as well and slowly but surely I am getting better at understanding the importance of pacing myself.
I agree wholeheartedly about exercise changing one's life. I cannot even stress enough how much it has helped me mentally and emotionally over the past few weeks.
Wonderful post that brings great perspective to how to approach exercise with autoimmune disease. I am also guilty of the "all or nothing" approach. It is intimidating to begin to exercise again as someone who used to be very athletic without the expectations and competitive goals from before I became sick. I have started with very light arm weights and short walks in my neighborhood. These are activities that I could not have done just a couple months ago and reminding myself of that makes me appreciate that I can do them now.
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