My Life, Such As it Is

Posted: October 4, 2015 in Uncategorized

I know I don’t talk about what it is like living with Lupus very much. I hate to sound like I am complaining. I don’t like people to see my weaknesses. It’s a ridiculous way to be, but that’s my life, such as it is. But then sometimes I think about how not many people really know anything about Lupus and how sometimes even the best intentioned people can cause me pain because they don’t understand what I am going through, because I don’t let them really see. So I want to maybe try to help people understand what it is like. I want to kind of explain what my day to day is like and maybe help some people know just how much it differs from the “norm”.

First off, I am very lucky. I have a lot of wonderful, caring, compassionate people in my life who try hard to be there for me and understand. A lot of people in my situation don’t. I am lucky in that from the time my symptoms began, from the time I started having pain that wouldn’t stop and I decided it might be time to go to the doctor and see if there was really something wrong, it only took 3 years for a diagnosis. It can take a lot longer than that. Lupus is hard to diagnose. I am lucky in that I have a rheumatologist who listens to me and takes me seriously and is actually generally more concerned with my health than I am. I argue with her to get her to lower my prednisone amounts because I am human, and as a human, I can be vain, and I hate what it does to my body. I hate that I gained 45 pounds that I can’t get rid of because I am still on prednisone. Even though that awful little steroid is what helps me get through my days at all. So she won’t let me go any lower until my blood test levels are better. She asks me if my painkillers are still working instead of looking at me like I’m a junkie the way I hear it is for some people. She yells at me for doing too much because she knows it causes my symptoms to be worse. I am lucky in that I take control of my health care and won’t stay with a doctor who doesn’t seem to listen to me or care. It took me 3 tries to find this rheumatologist, and even then, it took me a few appointments before I lost my wariness and started to believe she had my best interests in mind. I am lucky in that I am a fairly optimistic person who finds it easier to joke about things and give my disorders silly names to help me not take it all too seriously.  I am lucky I have a husband who helps me and I am lucky we have health care so I can even get treated, even if the bills still pile up from what the insurance doesn’t cover, and the copays and the 10 prescriptions a month for me alone. I can’t even imagine what it would be like to have to try to deal with Lupus, and Hypothyroidism and Fibromyalga and Chronic Migraines and Reynaud’s without it. These are all things I have been diagnosed with. And I see a my family doctor for some, a neurologist for others and a rheumatologist for the rest. Specialists ain’t cheap. I am lucky that as of now, the Lupus hasn’t moved on to attacking my organs and sticks with attacking my muscles and joints. I am lucky my meds are helping keep everything in a semblance of control so I can have a life at all. I am lucky. Very, very lucky.

But I am also a person. And even though I know there are those worse off than I am, that doesn’t change the fact that I can’t help but let it get to me. I deal with depression and anxiety. They tend to go hand in hand with chronic illnesses. I take meds to keep that in control too so I don’t let my own mind destroy me. I will continue to take these meds. No amount of essential oils or exercise (even if I was able to exercise in the traditional sense, which I am not) or healing crystals or diet changes are going to miraculously heal me. My meds keep me from dying and keep me living in a way that is worth living. But antidepressants aren’t happy pills. they don’t make me happy, they just keep me from letting my mind destroy my life. I still get depressed. I still have anxiety. I still sometimes feel sorry for myself and I still sometimes have a very bleak outlook on life. This isn’t the norm though. I can’t let it be, but I also can’t help that it is there sometimes. It will usually hit me when I have to miss something I really want to do, or suffer in pain for days after doing something I shouldn’t or pushing myself too far.

Yesterday, I went to a party. I couldn’t stand missing another family event and I wanted my kids to see their cousins and play and have fun. I took enough painkillers to get through the party and I even had fun. I knew it wasn’t the best idea. My weekends are the worst days of the week. After a week of doing everything around the house and taking care of kids, when the weekend rolls around and I know my husband will be home for 2 whole days to help me, my body lets the week catch up to me. So yeah, I knew going out that I would pay for it, but sometimes I make bad decisions for my health for the well being of my mind. So even though I knew going into it that I would pay for it, it doesn’t change the fact that I am still feeling a bit sorry for myself and I am still pissed off that I have to deal with this shit. I got home from the party and my body gave up. Every step I took was agony. There was no comfortable position to sit in. No way to feel better. Just the haze of pain. I was exhausted. Bone weary. Fatigued. I could not move with out pain and feeling like I was going to collapse from the exhaustion. But I couldn’t sleep with the pain. I was hungry but too nauseated and tired to eat. I took meds so I could get some sort of sleep. I woke up feeling worse. If I had to do this alone, if I had to try to get through a day like today without my husband to help me with the day to day and the kids, I would probably break down. I’ve done it before on really bad days when he is at work. It sucks. Everything about today sucks. And it makes me very angry that I can’t go enjoy an afternoon with my family without needing at least a day to recover. I am going to an indoor waterpark in a couple of weeks. I know how bad that is going to be on my body. I know that it is most likely going to take me 2-3 days to recover from that. I’m still going to go. And I am still going to get upset and depressed and cry and get angry when I can’t move for a couple days after. I think that maybe it will be easier the longer I deal with it. Right now, everything I was able to do just a couple years ago is still fresh in my mind. I still lament the loss or my previous normal. I still remember what it was like to not have pain every day of my life with the only variance being the level of pain and where the pain is. I remember what it was like to “just be groggy” sometimes and be energetic sometimes instead of this constant fatigue and exhaustion. I remember what it was like to just go do something on the spur of the moment just because I wanted to and I remember what it was like to say no to things because I didn’t want to go instead of couldn’t go.  Maybe as that becomes a distant memory and as I get used to my new normal, I will deal better. I don’t know. I sure hope so anyway. And in a day or 2, when I am back to my new normal, I will go back to my positive outlook on life and my hope and my gratitude for what I do have.

In a lot of ways, Lupus has helped me. I am a lot less judgmental than I used to be.  I don’t know what anyone else is going through in their lives. I have no right to judge anyone else. I have always told my kids that it is our differences that make this world so great. That everyone is weird in some way and that’s really cool and just because I may think something someone wears or does is strange, that doesn’t make it wrong or bad. As long as they aren’t hurting anyone, then continue to be awesome and different and embrace the weirdness of our world. I always tried to be non-judgmental, it just comes a bit easier to me now. I am a more positive person and I let things bother me a lot less. Holding on to anger or sadness or hurt is a waste of my time. I don’t have the energy for it. I still get that way, I just don’t let it stay around and fester as much as I used to. I enjoy things more. My time with my kids and my husband are more precious to me. Playing board games or video games together, snuggling on the couch, watching a movie, having a conversation, being silly, hearing about their day, I pay attention to it more. I know what this disease can do to me. I know how bad it can get. I know my muscles can degrade a lot more. I know my organs can shut down. I know it can kill me. So instead of worrying about what I can’t control, I try hard to really be present and enjoy my day to day life with my family. They mean the world to me. They keep me going and keep me from letting this eat away at me (figuratively anyway). They keep me grounded. They keep me at peace. Their love for me and my love for them makes me happy, and sometimes it can wipe away the bad thoughts and feelings and make me really appreciate what I have. Some people have to go through this alone. I don’t. And I am very lucky for that. And I love my life. I may hate Lupus and everything else wrong with me, but my life? I love it. Such as it is.


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