I’ve been battling my body for about 9 years now and well exercise just wasn’t at the top of my list. To be honest I hate to exercise because I would always feel worse. It would take me weeks to recover that at some point it was useless to me. The pain I would experience was awful it was torture. Let’s fast forward to now, my muscles are weak, my muscle mass is gone, and exercising still hurts. What really made me reevaluate my activity was not being able to do a single cart wheel with my daughter. Yeah yeah I know I’m older now but my arms couldn’t even bare the weight. My arms buckled and I fell. I was so disappointed and a little embarrassed that I let myself get this bad.
You see my idea of exercising was the hard core types of exercises: kick boxing, heavy weights, high impact cardio, cross fit type exercises. What I didn’t know was that these were not the only types of experiences out there. Also I had no idea that some exercises are better for you than others. When I was younger I could handle the hard core stuff, but as my body began to crumble so did my ability to workout. I never once said to myself is there another option for me? Well apparently there is! It took me years to figure this out but I got it eventually. I started looking at different kinds of exercise from cardio to yoga to Pilates and found that what I needed was an exercise routine that was low impact but also focused on my joints. Too much stress on my joints made me hurt badly. I knew that if I wanted to get back into shape I needed to listen to my body and go at my own pace even though I knew it would be slow. I researched gyms, trainers, and Cross Fit gyms but didn’t find what I was needing. Don’t get me wrong those places help a lot of people, but it wasn’t conducive to what I needed and what I was looking for. In my experience the trainers I talked to had no idea what lupus was or even how to help me. So I did more research and found a trainer that lives 5 houses down from me, I kid you not. He had me come in for a consult and mapped out my disease, symptoms, diet, and tailored an exercise routine that is more focused on my joints and my level. We meet every week for 30 minutes and we work with resistance bands and low impact cardio. This and three days a week of low impact walking has made life livable again for me. I started training around October and my joints have stop hurting due to exercise. I found something I can do to stay active and live without the agonizing pain. The one thing I never did was listen to my body, Bryan taught me to listen and do what I’m capable even if it’s low impact walking. He made it okay to work at my speed and level. I cannot wait to share what I have been working on with him!
I am not one to toot my own horn because I don’t like being center of attention, but today was a huge achievement for me. I was finally able to climb Table Rock trail head! You see, Boise is surrounded by beautiful mountains and trails, it’s an outdoors man dream come true. I have never enjoyed them because I couldn’t make it to the top ever. Well today I did it!!!!! My husband and I climbed it together, we listened to music, talked about life, our kids, and my disease. He told me he was proud of me and how I’ve continued to amaze him with dealing with my lupus. It’s not an easy disease to deal with and most days suck, but today I’m going to chalk it up as a victory in my books.
My morning starts with me forcing myself out of bed because I have to get the kids ready for school. Lunches need to be made and backpacks need to be packed and then of course there’s breakfast. My kids have learned to get their own breakfast because they know how hard it is for me to get up. Then my daughter can’t find her shoes or her gloves. The list goes on, but all I can think about is how I’m going to survive today because I feel like crap and I’m exhausted. My joints hurt and the nausea is kicking in. Did I mention I’m exhausted! I have to take kids to school, go to work, pick kids up, head to after school activities and do all this without getting any rest in between. Oh and make dinner when I get home from the kids activities. I’m driving kids to school and feel an intense agitation because all I want to do is go back to bed. My joints are screaming at me and I’m nodding off while I’m driving. I crank up the music to help me stay awake. It’s going to be one of those days where I’m fighting myself and my body. My mind wanders because I didn’t sleep well and I realize I forgot my lunch and medication. (Insert cuss words here) I don’t have time to turn back and retrieve them (shit). My day is officially ruined.
I get to work and contemplate taking some nausea meds but decide against it because it makes me super sleepy and I’m already nodding off. I try to work through the fatigue and keep myself busy but that’s not helping either. Why did I forget my meds I silently scream to myself. I think about calling my husband and see if he can grab my meds but quickly dismiss that idea. I was the one who forgot them that’s on me. This is where I mentally beat myself up. I can’t even take care of myself. More emotional beating on myself. I suck at this I tell myself while I’m at my desk trying to work. I suck at everything I tell myself. And this is where my illness beats me at times. Having a chronic illness is no easy feat. I’m constantly fighting my body and mental well being. I sink into a quiet sadness while at work and hide in my office area so I don’t have to see anyone. I’m on the verge of tears but keep those squashed because I don’t want to draw attention to myself. So I silently suffer alone. I do this a lot.
Finally my work day has come to an end. I’m relieved but not super excited because I still have at least 5 more hours of shit to do. As I head to pick up my kids I mentally prepare myself to be around other parents. I put on a smile and act as if everything is great even though my joints are still screaming at me. I put on an Oscar worthy performance as I chat and mingle with parents at the pick up spot. No one knows I’m in pain.
By the time we get home I’m so exhausted that I’m cranky with my kids and husband. I just want to scream at the top of my lungs that I just want to go to bed and rest. But I can’t. A mother’s job doesn’t end.
Having an autoimmune disease is living with constant pain, brain fog, and stress. Your body’s immune system is attacking healthy cells in your body by mistake. There are more than 80 types of autoimmune diseases, and some have similar symptoms. Getting a diagnosis can be frustrating and very stressful. Often, the first symptoms are fatigue, muscle aches and a low fever. The fatigue I experienced was so bad I was falling asleep while driving my kids to school, sporting events, practice, piano lessons and the list goes on. It didn’t matter on the time of day I was exhausted all the time. How can I function as a mom if I can’t even stay awake during the day. I was so scared of crashing with my kids in the car. My daily battle with joint pain and brain fog didn’t make it easier either. I was a mess and falling into a deep depression because I was failing at being a good mom.
When I got my diagnosis I went straight to the internet for answers and immediately got overwhelmed. There was so much information out there that it was hard to take it all in. I just needed the basics to understanding what I was dealing with at first. The internet can give you so much information at once it gets mind boggling at times. I had to break it down into parts because I was getting overwhelmed and stressed. Which is not a great combo with this disease. High levels of stress can cause a flair, which is an increased level of symptoms of the disease.
Once I had an understanding of the disease itself and i knew it wasn’t a figment of my imagination of being a hypochondriac. Something was physically wrong with me. I set out to find out everything about autoimmune diseases. What truly helped me was developing a plan by understanding what my symptoms were and what caused me to flair. I began documenting everything: foods I ate, stress levels, anxiety levels, fatigue, when I went to bed, water consumption, and on and on. I was hitting a wall because there was no real pattern I could discern from documenting. But it gave me perspective on my symptoms and my emotional state. I wanted to treat my diseases without medication but that was not a reality for me in the end. I had to get my symptoms in check if I was going to survive motherhood. I began investigating treatments, diets, medicine side affects, homeopathic remedies, stress reduction techniques, exercise, etc. By doing this it helped me generate questions to ask when I saw my rheumatologist and internal medicine doctor. I would write down my questions as they came up in a journal.
I feel that collaborating with my doctors was an important step for me because I needed a team of physicians that was there to support me. I needed them to listen and help me develop a treatment plan that fit my symptoms and emotional needs. My goal then was to create a team that consisted of an internal medicine doctor who would then oversee my specialty physicians. All my specialty physicians report back to my internal doc so he is up to date on my symptoms progress, meds, and any tests or blood work. I developed this team in late July and have been doing better physically because they are not repeating anything treatment wise. I’m finally getting the care I need and want. It was a lot of work finding the right doctors but well worth it in the end. I literally shopped around for doctors till I found the right fit for me. This is important to know because doctors are providing a service in a sense and you need to shop around until you find a team of doctors you can trust. I knew I wasn’t going to be able to do this by myself. I hate asking for help but I hated the thought more of me crashing and killing us all because I didn’t take action to care for myself. In the end being diagnosed with lupus really forced me to question and change my ways. If I wanted to be a good mother to my children I had to make my health my number one priority. And yes that meant prioritizing above my children too. I’m no good to them if I’m sick all the time. This was a hard realization for me and even harder to initiate because my kids are my world!
I would love to hear about your experiences with doctors and how you have advocated for your health.