Okay, so I had a terrible week last week. I hadn't even checked my Facebook in an entire week, that's how bad it was!
Last week started off okay, I went to work on Monday and thought everything was great. I was optimistic, but half way through the day my body started to betray me: I got the chills and then my body started to ache and I became extremely fatigued. So, I decided to skip lunch and take a quick power nap on one of the tables in my classroom. I didn't feel any better. The last two periods of the day, I literally fought off falling asleep at my desk while the kids read. By the time the bell rang at 3:15 p.m. I was running out of school WITH the students.
I went home that afternoon and passed out. The next day, I couldn't get out of bed, so I didn't go to work. Wednesday, I couldn't go to work and to tell the truth, I didn't want to. Aside from the crippling fatigue, I was experiencing terrible anxiety. Thursday-no work again. My husband told me that I was going to get fired and truthfully, I didn't care. That day, they started calling from Central Office asking for me to call Risk Management ASAP, so Friday I reluctantly went to work. That day I felt terrible too because I was sensing a migraine coming on, but I pushed through it. I did call Risk Management and the told me they were going to put me on temporary leave; this means that I have excessive absenses due to illness and it is "for my protection".
Okay, so by the end of the day I had a full on Migraine and it lasted 24 hours. The nightmare didn't end there. My whole family somehow aquired a stomach virus and we were all puking all over the place the entire weekend. Everyone was knocked out and I didn't get out of bed all weekend.
So, now it is Monday again and the sun has come out from behind the storm clouds. I am at work!!! Yay!!! I feel only slightly tired and on a scale from 1-10 my pain is at a 3. That is fantastic! I reached the light at the end of the tunnel. All I could do is pray that this reprieve lasts. Pray for me everyone.
I didn't go to work Thursday or Friday. I literally couldn't get out of bed. My poor little ones played around me on the bed and on the floor in my room. My son is 5 and I couldn't get him dressed to get on the school bus to go to school. My daughter is 4 and usually stays with my parents during the day, but since I stayed home, she stayed with me.
They are so good kids! At such a young age they know and understand I don't feel well and act accordingly. At one point I woke up and found them both lying on my bed: one with a tablet and the other playing games on my phone. When they noticed I was awake one of them said, "Oh, mommy, did you get enough rest? Do you feel better?" All the while, my daughter rubbed my back they way I usually do when they don't feel good. This is what it has come to? My little ones taking care of me instead of the other way around?! Then I got up and made them lunch and they were still asking if I was okay to get up and make them food. Can you believe that?! It hurts my heart that I can't be the mom I used to be and should be for them.
So, I stayed in bed for 4 days. My husband was so great this weekend. We had tickets to see the Harlem Globetrotters and took the kids on his own because of course I was too tired to go, and Sunday he took the older boys paint-balling all day.
So today, I came to work and had a good day...not great but good. I felt like a normal human being. It feels good. It's amazing how great it feels to be out of my bed, because although staying in bed getting much needed rest is something that I desperately need, It also makes me feel so isolated and depressed.
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Okay, so fast forward to today, Wednesday, January 23, at 3:15 a.m. I was fully intending to make this blog post somewhat positive and inspiring; you know, that we could overcome and all that crap, but as soon as I got home from work and picked up the kids, I fell into what seemed like a coma for hours. I felt like a car hit me and I was broken everywhere, so I did not go to work AGAIN! I am back to my prison that is my damn bed.
So I spent another day in bed. I couldn't sleep all night from pain and anxiety, and then slept all day until 3:30 when my son was dropped off by the bus from school. I have to tell all of you that this Lupus is kicking my ass! I am losing myself and I can't dig myself out of this hole. I am depressed and anxious and I don't know what to do. Does anyone know what to do? Any suggestions?
Okay, so yesterday I didn't go to work, again, on a Monday. In case you didn't know, I teach middle school. Yes, that is enough to make any person not want to go to work, but I have been teaching for 15 years now and have never felt this way before. Sunday night I start to feel nervous, my chest feels tight, and my mind starts racing so much I get very little sleep, so I end up not going to work on Monday. I am starting to notice it has been getting progressively worse. The thought of going to work makes me sick.
At the beginning of the year, I had a particularly difficult class and I started to have all the symptoms of a heart attack and I even had my husband take me to the emergency room just to hear I was having a panic attack. You have to understand that this is just not me! I am a stable person and all of a sudden I have anxiety?!
So, the very next time I visited the rheumatologist, I spoke to her about my symptoms and I was prescribed Xanax and told to take it only when needed. The problem is I feel this way every single day I have to go to work. Now, isn't it bad enough that I have Lupus with all it's complications, Sjogren's Syndrome, Hypothyroidism, and Fibromyalgia, now I have to contend with mental health issues like anxiety?! What a bummer! This anxiety is making me depressed! (which I already take medication for by the way!)
So I am at work with my students today and once I get here it is not so bad, but getting here takes hours of talking to myself. I have to mentally drag my butt to work. It sounds strange but it is true. I lie in bed and tell myself, 'you need to get up', 'you are going to get fired,' 'think about the house,' and 'it won't be so bad just get up.'
Am I the only person with Lupus who is literally scared to go to work?!!!
So, I am on my fourth week of Prednisone. I am down to 5mg a day and I have to say that I feel pretty good. Now, I am always afraid to say that out loud because it always bites me in the ass later, but aside from some minor aches I feel good. I feel like I can finally breathe: like I could relax.
For a while there I was feeling so bad it was depressing. I was barking at everyone and crying for anything. I was feeling hopeless. Even when I went on the Lupus groups that usually make me feel better, I would get annoyed with anyone who tried to sound "positive" about living with Lupus. Living with constant pain was getting the better of me and I couldn't even enjoy the holidays. Thank God for Prednisone!
Now, of course I could already feel my new jeans starting to fit tighter and even though I haven't stepped on a scale, I could feel myself getting fatter. But, I could honestly say that's okay. I am okay with it. As long as I have even a day or two without extreme pain, I will deal with my fat arms and big belly. Maybe I could finally start going out walking again...one can only hope!
It is that time of the year. The time to think of all the ways the ways we can change-improve. One thing I know is that as a Lupus patient I need all the help I can get and this year I intend on making positive changes not just out of vanity but for my own health and my family's well being.
1. Delegate: This year I intend on delegating some of my many chores and responsibilities to my very capable husband and kids. I have always taken on too many things on my own then I am running around screaming like a crazy person when no one helps! I started already: I made my husband in charge of hanging up both his and my son's clothes. Done! One less thing for me to do and one less thing to worry about.
2. Set up a Support System: I have started this already by joining two wonderful Lupus support groups online, but I need to expand this support system to people in my community. I want to start a Lupus Support Group in my area. The closest one is half an hour away and I never go. We need to help each other in ways our families can't-through complete understanding.
3. Be Active: Okay so I have gained over twenty pounds this past year and I am not going to stress about it anymore. I have tried to start exercise programs to lose weight but as anyone with Lupus knows, sometimes it doesn't matter how much you want to go out and exercise if your body refuses to cooperate. So, I am going to just be active every day in some way: either walking around the block or doing some yoga poses-something each day even if it is for just 10 minutes. Both walking and yoga will help with the stress also, so it's a win-win!
4. Be My Own Advocate: Ever since I was diagnosed with Lupus it has been like my family secret that everyone knows but no one wants to discuss. Most people know nothing about it: either they think I am dying or they feel like it's no big deal. So, this year I plan on working on spreading Lupus Awareness with my friends and family. I want to participate in a Lupus walk. I want to voice my concerns with my doctor instead of just going along with what he says because I am tired of feeling terrible all the time, so I am going to take the wheel and help myself.
5. Be Happy!: Okay so that seems so stupid to say that I am going to work on being happy, but with all the things that could go wrong with this illness I need to focus on what is important: me and my family. From now on, I am not going to care what anyone else wants or expects from me. I am only going to do things that make me happy. This is not out of selfishness; you wouldn't believe how stressed I get over letting down people at work or making others happy instead of focusing on what is really important to me. So I am done with stressing and living MY life.
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