As some of you know, from knowing me, you may not have even known I had lupus for years after knowing me and only found out in overhearing or happening upon a conversation I was having with someone regarding an appointment. I rarely talk about it socially. Of course I have this blog now, but in an actual conversation with me, it’s almost a non-topic. This post, however, is all about my recent journey with lupus.
I am not one to ever ask for help. I never have been. I have always been the type to “do it yourself,” figure out how to resolve or problem-solve a situation – on my own. Even when I was 37 weeks pregnant, I was loading our wood stove on the floor, and using chairs, and other furniture to maneuver myself around our house. I never asked for help.
I am currently amongst a flare with lupus. Even after all these years (12 years since diagnosis, and 18 years since symptom onset), I still am taken by surprise with a full-fledged flare. There are times when I have a few symptoms a flare might be coming, but it never gets severe. But these times when it’s full on, mostly all severe symptoms, it’s hard to process. As one who has a lot of energy and never wants to ask for help, struggling, to make it up a flight of stairs, get down on the floor to play with my child and clean up our house, is tough to swallow.
One of my current worst flare symptoms is what I call the “morning sickness” feeling – but what is technically known as malaise. If you are a woman reading this – you know what I am talking about! The awful feeling of a vertigo problem, combined with some nauseousness, a low blood sugar feeling, and a general feeling of wanting to escape your own skin. As one could imagine, this is a bit difficult to handle while trying to work, take care of a child, and run the household. Then comes the total and utter exhaustion – which I have posted about before. It’s just inescapable tiredness, then this is followed by a small fever, with some horrific joint pain. Every single joint in my body hurts. Toes, ankles, knees, fingers, wrists, elbows, neck, back, ribs… and every muscle in between. Other flares, I also experience mouth sores, nasal sores, and sometimes pleurisy near my left lung. Thankfully this particular flare I am lacking in those last few symptoms.
Between the soreness, pain and exhaustion – simple things become a real task…
“Mommy why can’t you carry me up the stairs today?” Bubba asked me yesterday.
“Mommy why are you tired from going up the stairs?” Bubba asked me yesterday.
This morning, my lovely energetic little Bubba (now almost three years old!) decided to run through the snow across the yard instead of getting in our car. It was very difficult for me to chase and then catch and lift him. My knees were aching and burning and the strength I needed to hang on to him and haul him into my car just wasn’t there. The feeling of that chase and loading of that kid into that car was so exhausting that by the time I sat in my seat to drive, I felt like I had been working a 12 hour day and it was time for bed. (It was only 7 a.m.). While making that morning drive I needed to reach back and hand a tissue to my son, and the movement of passing that tissue to him in the back just made my elbow ache.
By the time I got to work at 8 a.m. I was beat. I could have laid down for a nap and it was tough to move out of my chair, and to focus on what needed to be done. I am also a “work horse” and I can do massive amounts of work quickly. I have to because I am only working part time (but usually have enough work to work full time!). But once again, this work horse wasn’t moving fast today.
After returning home from work today, the thought of having to carry a laundry basket while climbing my stairs was impossible. I had to ask for help. When I am feeling good, I can do three or four loads of laundry up and down those stairs in a heartbeat. No feelings of being tired. But standing in my kitchen thinking about attempting to make myself move up the stairs carrying those baskets was overwhelming. The exhaustion added to the pain of moving those joints and muscles with extra weight… just too much to consider.
My loving husband didn’t think twice about my extremely unusual request for him to please carry all the baskets of laundry up those stairs. But it took all of me to ask for that help.
Knowing What You Can Do
After I asked for that help tonight, and received it, I realized that it doesn’t have to be so hard if I ask for help. It’s hard enough to deal with the battle raging inside of me, why make it harder by being stubborn and not asking for help? I am not asking to take advantage, I am asking to make the rest of my night (or day) be acceptable, despite the symptoms I have.
It’s about finding that balance. I am lucky enough to have a wonderful family, who know me, and know I hate asking for help, but would do anything if I asked!
My diagnosis is considered “mild” lupus, and that there are so many other people who suffer much more than myself. We all have a similar journey, but everyone’s symptoms are different. Mine are considered mild.