Let me introduce myself and lets talk fatigue

Greetings everyone,

 My name is Michelle Scheeland and I have SLE Lupus. I was diagnosed with Lupus a year ago but we don’t know how long I’ve had it. We know it’s been years but how many is a mystery. What I do know, is this last year has been the first year I’ve experienced a cluster of “typical” Lupus symptoms such as; fevers, fatigue, migraines, joint pain (to include loss of limb function), hair loss, skin issues, temperature regulation problems, and a barrage of neurological issues. I’ve had many of these issues before but not all of them at once and no one put it all together until last year. I haven’t had a break from most of these symptoms since they began well over a year ago. Of course, if you have Lupus you know how long it can take to actually get diagnosed after the symptoms present.

Before these symptoms hit, I was an amateur kick boxer and had competed in a couple Jiu Jitsu tournaments. I’d found fighting later in life so I was 34 when I fought last. I am 36 now and finally starting to get back into training to fight again. I’m starting to get back into shape slowly and I plan to fight at least one more time if for no other reason but to stick it to this disease, even if it’s just once more. I’m also a cardio instructor but I had to give up one of the two days I instructed and I had to stop cleaning my gym.

I am the mother of three awesome boys ranging in age from 16 to seven. I was such an involved mother before all this. The teachers and faculty at my boys’ schools knew me through volunteering and advocating. My eldest has High Functioning Autism (Asperger’s, until the powers that be changed it in the most recent DSM). So, we deal with IEP meetings, babysitting Gen. Ed. Teachers, and I use to volunteer with his JROTC’s, Raiders Club, to get my son to participate in an after school program he enjoyed, because he wouldn’t do it without me. Yep, that ended.

But, that’s not all; my husband it a soldier. This means I get to be alone with my kids and this disease anywhere from days to months at a time. Further, that poor man has endured so much to be a good and helpful husband. It’s not easy for a soldier to be forced to stay home from trainings because his wife has lost the ability to drive due to cognitive issues. He gets to deal with resentful and frustrated co-workers all day to come home to cook dinner and help our oldest with his Algebra 2 because I have zero energy and my joints hurt so badly.

I am no doctor but most doctors can’t understand what living with this is like. This blog will be about my experiences and what I know about Lupus, chronic pain and such. My hope is that my experiences will help others to learn about Lupus and for those who suffer from it to know they’re not alone. I’m going to go over one symptom or situation at a time in my posts because so much is involved in each symptom or situation that I’d never stop writing if I went over everything at once.

Today, I want to talk about the one of the most prevalent symptoms among Lupus fighters, fatigue. I cannot begin to express how debilitating and life changing this fatigue is. Holy cow!!! Never in my wildest dreams did I ever think my will power could be trumped by fatigue this way. I’m a strong person and extremely determined but nope. When it gets a hold of me, I’m channel surfing because there is nothing else I can do. I’d love to grab my yarn and make a hat or do something productive while I’m sitting or lying on the couch for hours but often times, I don’t even have the energy for that. Honestly, just thinking about the things I have to do is exhausting.

Lupus fatigue influences every facet of one’s life and no one prepares you for this. It puts a stop to your productivity at home, at work (if you can work), and it can impede, if not cut off, your extracurricular activities. Perhaps the worst part of the fatigue is it’s affect of your emotional wellbeing. I ended up hating myself regularly. It is such a crazy head game. I have goals and aspirations but you wouldn’t know this because I’m too tired to achieve them. Honestly, thinking about achieving them and everything involved in doing so makes me tired. I get mad at myself for not accomplishing the things I use to be able to do and I get depressed. I get mad at myself for being such a burden to my family as I watch them doing my chores and I get even more depressed. I’m lucky because my immediate family is great and understanding about it, but not everyone has a supportive family. I don’t really have help outside of my husband and children but that’s more than many people have and I still end up in the self loathing to depression cycle. You know what that causes? It causes stress which leads to more fatigue.

No one tells you this will happen. I wasn’t prepared for it. Most people don’t understand and frankly, so many people jump to judgment because they have no idea. She’s a flake, she’s lazy, she just doesn’t want to do it or she wants everyone else to do things for her. I’ve had my share of crappy family making negative assumptions about me so I understand how alienating it can be to suffer from an invisible disease. Further, it’s not enough that I cannot hang out with friends like I use to; I get to deal with negative judgment because my self-loathing/depression cycle isn’t enough. I mean, I don’t have the energy to maintain relationships with most people anyway because it’s too much, but now I’m self conscious of the possible negative judgment.

To add, my boys actually want to do things. Like, they want to be kids and experience life. This poses a challenge because I was the hiking, camping, let’s get out of the house and go on adventures mom. Now, I’m too tired to play Legos or build a primitive shelter in the woods. I cannot begin to tell you what a stellar parent I feel like now that I can’t do these things with my kids as much anymore. They have to watch me limp, lying there on the couch as I say no to going swimming on a hot summer day. On the flip side, I get to see the disappointment in their faces as they have to adjust to our new family situation. It is miserable and though it’s not my fault, I didn’t give myself Lupus, I’m the reason for this change and it hits me hard.

If that wasn’t all bad enough, I use to fit in a Misses size 5 and I am now in a Women’s size 10. I know, this isn’t super big or anything given that I’m 5’8”, but I worked really hard to get where I was, especially considering I’d lost nearly 100 pounds between 2012-2014 after my year in a wheelchair. Prednisone and fatigue crapped all over that. This means I have that much more working against me in my endeavor to fight again because it’s all based on weight. I won’t even let the doctor weigh me unless I have a procedure, until I fit back into a certain pair of pants. So, leaving the house is difficult because I have nothing to wear since my biggest pair of jeans barely fit me and everything else that fits are yoga pants, baggy shirts, and big hoodies. Needless to say I am uncomfortable in my own skin and for that reason I am embarrassed to be in public. Again, it’s a head game.

So, what have I done to help with this? I pulled my head out of my, well, you know. I had put too much pressure on myself to be who I was. I’m not “her” anymore. It took a year for me to figure that out because I’m stubborn that way. I observed myself, pushed my limits to find them, learned what my body can and can’t do and I’ve adapted my schedule to that. I don’t make plans with people anymore, for the most part because I have no control over how I may feel that day. I’m working out in the mornings and/or early afternoons because I’m generally down by six or seven, if I can function that day. I take breaks regularly. I’ll clean a room, start feeling slow and park it for an hour until I feel I can do more.

Now, I still struggle with fatigue but I’ve reevaluated how I approach things. For example, I start with one thing and build on that as I can. Today, the kitchen gets cleaned, and if I can do more, sweet. If not, well, it’ll wait for me until tomorrow. I budget my energy in a way I never had to before. If I have plans for later, I chill out until it’s time to go. I’m putting in my packet to be a substitute teacher and/or para so that I can choose to work or not based on how I feel that morning. There’s no guarantee I’ll have energy but I can try. I’m on various amino acids and vitamins for energy (EGCG, B-12 injections, L-Carnitine, DHEA (because of so much prednisone), a phosphatidylserine complex for dopamine levels and so on). The most important thing I did is realize I’m a different person now and I stopped stressing out by trying to be someone I’m not anymore. I still have plenty of issues with fatigue but the hate/depression cycle is broken so I’m more productive. If feels good to be able to accomplish more because I put less pressure on myself. What are your thoughts?