Uphill Battle to Find a Balance

Okay, We all have that friend who has the answers to everything. The one who volunteers her solution to everything even when you don’t ask. Even when you just need someone to talk to. But what about the friend who offers to go walk or hike with you, maybe even get a little yoga in. She knows that you are dealing with a physical handicap and understands that when you do anything physical it requires a lot more effort. Until you are right there in that moment together. Then, the all wise know it all starts to come out. And so do the comments like “ omg, this little hill” or “I can’t believe you are sweating so much already, It hasn’t even been half a mile”.

A while back I got together with a friend, actually I got together with a few friends in the past to do some physical outdoor stuff and ended up feeling defeated, frustrated, cheated, judged and like a failure because of their comments and lack of understanding, even though “I completely understand what you are going through, my friends sister had ________…” Right.

Before I started having crazy symptoms of SLE I was super active in hiking, running, jogging, boxing and a ton of other physical activities. Then I woke up one morning and I literally could not move a finger. I was also a strict vegetarian and an active duty soldier at the time. So I know for a fact that this Autoimmune illness that took over my body did not happen because of lack of exercise, or lack of nutrients. But no matter how many of my friends know this, a few of them still insist that all I need to do is exercise regularly and eat properly. And that’s it. I will be healthy.

I almost feel like sometimes a friend will offer to hike or exercise with me just to see what I’m doing wrong so they can point it out and correct me. But what they usually see is someone who is obviously unfit and someone who really does physically struggle with stamina and strength. But it is still in their head that “you just need to eat better and exercise more.” I have literally given up on trying to explain things to people. And when these same people ask me on occasion if I wanna go exercise with them i respond with “I’m busy” or “working” or something like that. Thats how I have chosen to deal with it.

Typically after I have a day of physical therapy or exercise, It takes around a day or two to recover. Sometimes longer. And sometimes I even end up in the ER or admitted to ICU. This has become regular for me. And on some days where I feel good, I am scared to even do anything because I’m afraid that it will make me sick. I’m literally held captive in my own body. Damned if I do, damned if I don’t.

I started thinking little bit more about exercise and who to do it with. I don’t have a problem with going at it alone. actually thats what I like to do I find it to be very therapeutic! But I also know that in this day and age exercise is a social thing too and I really used to enjoy the company of others. I wonderd If some of my friends think they can “save me” by encouraging exercise and being my partner. Typically when I would partner up with a buddy, I would partner with someone who was stronger than me so that I could have something to work towards, and motivation. But obviously things have changed, and so have my fitness goals.

Thinking that a personal trainer might be a good idea for me, thats what I went after. I met up with this dude (a certified personal trainer) and explained my situation to him. He assured me that he understood completely and that he was going to work with me. Then I saw the work out plan he had for me and I knew that wouldn’t work. So I emailed my concerns. He said “ I would rather speak in person at our next session.” So we did. I repeated what I had said in the email and he totally dismissed it with. “mind over matter, I don’t believe in all that.” I immediately knew that this is not the personal trainer I should be working with.

I don’t think he even did research on systemic lupus. He kept saying things like “Im gonna get you sexy for the summer time, don’t you want that?” (as he excitedly pumped his fist, clapped his hands and did other energetic gesticulative movements.) “I’m gonna have you loose weight so you can be in that nice bikini.” First of all that did absolutely nothing positive for my self esteem. Secondly, I verbalized, and had written to him what my fitness goals were. He chose not to listen, he chose to try to proceed with a cookie cutter fitness program. He told me that I shouldn’t let the sniffles get in the way of my fitness. I haven’t completely written off finding a personal trainer. But I do know that it is going to be difficult finding someone who is actually qualified to work with someone who has this type of handicap. I feel like I need someone who is certified in sports medicine, physical therapy, and therapeutic exercise. Sounds like a lot to ask for. But I know Im worth it.

I really wish that there were some sort of team or group dedicated to helping people like me fin a medium when it comes to fitness. Like, your current abilities, medications, diet, nutrition, all of that would be evaluated, then you would start a program that would encourage health. I imagine this program would be kinda like AA where you’d get a sponsor, and there would be meetings, goals etc. And when there are set backs, you don’t get scolded, you just pick up where your setback left you. These goals would be realistic and attainable. Maybe there is such a program, I just don’t know about it. If so, I would LOVE to hear about it! Im sure I wrote something about my difficulties and fitness before, but seeing as to how this disease threatens physical capabilities I always find something new to talk about! Especially when you are only cool if you exercise these days. I’d like to hear you experiences, good and bad. What are your thoughts?

Disclaimer: I know that not everyone with lupus goes through the exact same experience as myself. These are just things that I have had to deal with personally. And these are my own personal thoughts. I do not speak for everyone who has lupus. But I do know that there are others who can relate.

Mila Grass