We are deep into that time of year where the whole world heads to the gym and starts seriously consuming green leafy vegetables. If you are me, this is usually accompanied by the purchase of new sneakers, vitamins, possibly a cute pair of leggings. All the things you finally need to get healthy….only wait. None of those things are going to do that for us, are they? I decided to investigate.

I have had success with a gym membership, but all I used were the treadmill, recumbent bike, and during a good stretch, the rowing machine. But I have always felt out of place there. Like people in tiny shirts were looking at me and thinking, “what is the girl in the jacket doing here?” And to be fair, I was thinking it too. The library is my natural element. A café or a bookstore is where I feel completely at home. Put me in a board room or a lecture hall and I am Zen. But not at the gym. I digress.

So I bought those new shoes and a snappy new jacket and off I went to the gym at my local community center. They have a big pool, sport courts, a gym, and personal trainers and as a bonus, they are a lot more affordable than a fitness club. This year I decided to get some one-on-one help and I hired a trainer.

Hiring a trainer felt like extreme extravagance on one hand, and like a vital necessity on the other. It had occurred to me recently that when I don’t know how to do something, I figure it out. I read about it. I ask people. I take a class. I never want to say I can’t do something without having a plan to learn it. And yet in all of this learning, it somehow had never occurred to me to do this for exercise. So I decided to change that.

This time, I decided to have someone teach me how to work out so I could feel at home as I got stronger. I emailed the fitness director and I let her know I had some limitations—and that they were inconsistent ones. I said “Lupus,” and I don’t always do that. I was excited and relived when she matched me with my trainer, Sam (not his real name). When he emailed me, he was quick to tell me that he had a close friend who also has Lupus. I took this as a great sign.

My starter session was like a game of chess as Sam put me through the paces of a regular training session all the while asking if I could lift weights (yes), to burpees (uh, no). We arrived at a plan and then I signed up for more sessions and away we went…

To manage the impact of the increased physical activity, I scheduled my sessions on Tuesdays and Thursdays late in the day. This way I had plenty of time to recover between sessions and I didn’t have to immediately head to work or another appointment afterwards if I didn’t feel up to it. I also limited the sessions to 30 minutes (plus a warm up). If this sounds short, it is. But it was just right!

Pretty quickly, I made some encouraging realizations. I am much stronger than I give myself credit for. I am also far more capable of serious exercise than I think I am. I have a tendency to be cautious. The safe route is not to ask too much of my aching knee. Not to ask my throbbing wrists to support my weight or to curl a hand weight. I assume taxing something that is already hurting is the wrong course of action and asking to really, seriously injure myself. For me, this was too cautious. My aches aren’t because of exercise or use. They are caused by a lack of sleep, a wave a stress, or a burgeoning sinus infection or cold kicking Lupus into action.

I pressed on though the general daily aches and pains, but I was careful not to over exert. It was good. I kept thinking of what I had read: exercise offers incremental gains in health and wellbeing and improves sleep quality. That motivated me.

Somewhere around my fourth session I hit my stride. Then Lupus hit me back. Once I start exercising, I want to keep going and going. That isn’t the right course of action for me. When I keep going, there is a tipping point that I quickly pass. In one minute I am feeling great—powerful, strong—and then in the next, my skin is warm, but I feel cold. I get a sort of pins and needles feeling on my head and face. This is how I know I have entered into lupus purgatory—that I am going to pay dearly for having done too much. I felt that pins and needles feeling during a workout and I knew I was going to pay for it, but I was encouraged by this message from Sam that night:

Wanted to reach out and tell you great job today by pushing thru the high pain day. Days like this will make low pain days easy to manage. Hopefully the foam roller worked, and please try and do those stretches that we went over today every morning. Remember 30 seconds each stretch. Happy Friday!

 A couple of sessions later I called to cancel on a day that I was really tired and Sam convinced me to come in anyway, promising to keep it low-key and for the most part, he did. When he asked me to kneel on one knee and use an elaborate exercise band I did it twice before having to speak up and tell him I was in agony. He pushed back, telling me to just do a few more. I almost did, but quickly grew a spine and declined again. I went home and slept for hours. Not ideal, but no harm done. And there is the satisfaction of having done something good—the goal is to exercise more, right? I emailed Sam and told him again that I would never try to get out of doing something I could do or pushing as hard as I could push, but when I cry uncle, we have to stop.

Then the dominos began to fall.

My eyes got really dry and when I contact tore while I was wearing it; it wasn’t long before I had an eye infection. I went to a session in my glasses, which made me grumpy. But I went.

I was pep talking myself for a full day in advance of my next session. I knew I was aching and tired, but I wanted to keep pushing through. That morning, I cancelled the afternoon session.  I got an email reply from Sam:

Hi, I understand there are last minute situations that arise but normally those are emergency situations. Last minute cancellations must be done 24 hours in advance. Below is the policy explained.

(The) Community Center policy: In accordance with our policy, the 24 hour cancelation (sic)will be strictly enforced and sessions will be forfeited for last minute cancelations (sic) with the exception of a true emergency.

When we first started our workouts I explained I do not like to charge people for canceling and would rather have a reschedule. If you cannot reschedule this would be considered a cancellation within 24 hours. How would you like to proceed?

I was feeling bad inside and out. This is where I have no grace about having Lupus. None. I spend a few minutes feeling faulty and wishing I was invincible like everyone else. Then logic kicks in and I remember that no one is invincible. Then I get mad. Does this trainer think I WANT to have to tell him I can’t do this today? This day I was snarky and took it out on him in an email:

Sam-Before we started I explained my health issue. I don’t always know 24 hours in advance to cancel. When I can’t, I can’t. If policy dictates that you have to charge me, for the session, I understand. Just let me know.  I’ve really come to enjoy our sessions. I don’t want to miss them. I think I may be coming to the end of my package anyway. Sorry for the inconvenience.

Only I wasn’t sorry. I was sullen and sulky. When Sam had the audacity to ask me if I had to reschedule because I wasn’t feeling well, or because of the holidays, I snapped at him. No. I wasn’t ducking out of the gym to eat Christmas cookies and sip champagne. I get short tempered when I am in pain. If I am in a ton of pain, I shut the bedroom door and stay out of everyone’s way. When I am in a little bit of pain, no one would ever know it (except my mom, who is like a clairvoyant in this. She can tell by the sound of my voice over the phone. It amazes me every time). When I am in more than a little pain, but not so much that I need to stop my day, I can be like an exposed wire. I responded to Sam feeling like that. Imagine this email in the tone of a bratty teenager:  

I hate telling people I don’t feel well. That’s why I didn’t. I’ve probably talked to you more about how I’m feeling more than anyone outside of a doctor’s office. It’s not because of the holidays. I’m having a flare. I can barely hobble around today. Coming in would have been futile. I’m not sure how long flares last but if I don’t stop what I’m doing and rest it will get worse and worse. Sorry to be such a pain.

He didn’t charge me for the session and said he hoped I was ready for a good work out the next time we met. I want to tell you here that I kept going, but I didn’t. I cancelled my training sessions by sending Sam this email:

I don’t think I am going to continue with personal training. I can’t reliably know when I am going to get sick and then I can’t tell you for sure when I am going to feel better. I feel terrible when I can’t make it in and then that makes me feel even worse. I don’t want to waste your time. I think you are terrific and I know you can spend it helping someone get fit. Happy New Year.

I was really careful to plan according to what I could plan for, but you can’t plan to accommodate Lupus—at least not all the time.  I underestimated this or at very least hoped that it wasn’t true and as a result, I am feeling down about it. Fortunately, my class starts next week. And I have these new shoes and cute jacket. Plus I am just a little bit stronger than I was before. Fingers crossed. I will keep you posted.

 

Click these links to fitness done right, despite Lupus: 

Lupus Foundation of American offers Q&A on Staying Active 

The Mayo Clinic Talks Exercise and Chronic Conditions