A Day in the Life of Lupus

I have been living with lupus now for over two years. Every day since has been a struggle as just the simple tasks of getting up and out of bed are often a lot to deal with. This is a behind the scenes look; an up close and personal view of what a day in the life of someone with lupus is like. I'm hoping that this will help people see what it's like to live with a chronic illness.

I'm going to start my day from the night before, as often my nights are a direct result as to why my days are so hard.

8pm - Often by this time I'm feeling utterly exhausted. I am extremely fatigued all day but by this time I find that it's just getting to be too much and I desperately need to lie down.

9pm- I find that by this time as I'm lying down and resting my muscles seem not to be to impressed with my sudden urge to relax so they begin to tighten. Have you ever had a fever? You know that sensation of your entire body feeling really achy? Well that's sort of how it feels but imagine now muscle spasms on and off. Sometimes they aren't bad and just more annoying then anything, other times they are painful and bring me to tears. I have pills that can and sometimes do help but with the help come nausea and dizziness. I also know that if I were to take these pills for my muscles the drowsiness would last into the next day making me feel as though I had been up all night drinking. I also have to deal with bad chills and cold hands and feet. This has nothing to do with the climate of the house as it's due to my anaemia and possible raynauds syndrome. The solution is a heating pad and layers.

So Lets say I decide to take the pills for my muscles.

10 -11pm- by this point I'm puttering around my computer answering emails, working on a few articles or spending some time on the lupus boards. Anything to keep my mind off the pain as I wait for the pills to take effect. Sometimes they take effect within an hour sometimes for reasons unknown it takes two or three hours. Once the pain is settled and the nausea is calm either from chewing on crystallized ginger or gravol. I climb into bed and settle down with the TV on since I find it hard to just fall asleep. Although the muscles pain may have calmed the joint pain or other symptoms haven't. I sometimes watch TV well into the early morning using the timer to make sure it doesn't stay on all night.

During the time I fall asleep which, is different every night depending on the pain, nausea, headaches, chills, fevers, muscle pain despite the pills, joint pain, cramping from IBS or sometimes chest pain. At any given time one of all of these problems can be the nasty culprit keeping me up and causing me to have a restless sleep. Often once I finally get to sleep I end up waking in the middle of the night due to pain or just restlessness from the medications. I find that I get my best rest from about 3am to around 9am or so. As life has it though there are times when I can't sleep late and have to get up early. I used to remember getting up at 6am and now I can't imagine being able to do that again. I love the mornings so sometimes I force myself to get up earlier so that I can enjoy the morning but that often will result in the next few days in me feeling sick and extremely tired.

10Am- depending on my night and how I feel that will determine when I can get out of bed but no matter what time I get out of bed it has now become something that isn't as easy as it used to be. Every morning I find that every muscle in my body is as stiff as a board and moving is a task beyond belief. It roughly takes me a half hour to an hour to be able to finally get out of bed. This doesn't happen every day but when it does it's painful. On most days I am very stiff and have to take my time getting up and out bed. On the bad days I have to lie there and move each part of my body slowly until the pain subsides a little then I can sit up and slowly stand.

First thing I do is taking my first pill of the day and rest as the pill can sometimes cause dizziness and nausea. I usually don't feel like eating as soon as I awake sometimes I don't feel like eating for hours so I use this time to do things like read, or write. These are things that don't require a lot of energy and it helps take my mind off the nausea. Usually the nausea subsides eventually.

Breakfast- I eat breakfast at different times everyday. It again depends on when I awake and how long the nausea lasts from my first pill. Every day I drink a meal replacement shake and a coffee I find that it makes me feel the best when I eat less for breakfast. After eating I can then take my second pill of the day.

Once breakfast is done then I shower and rest. Just the task of showering sometimes causes my muscles or joints to ache. The movements like washing my hair and such can cause pain and once I'm washed and dresses there are days I feel like I've ran a marathon. There are days when I have more energy, strength and less pain then other days but on my worst days I tend to have to rest for a bit after a shower.

Once I'm dressed and ready for the day the rest of my day all depends on how I feel. If it's been a bad night and a rough morning, I'm in pain and just not feeling good then the day is pretty much planned out for me. I usually try to do little things be it tidy my room, make my bed, or empty the dishwasher. I know doing small things helps out around the house and helps me not feel like a total invalid. Often then I need to rest. There will be days when I can do everything. I can run around and run errands, I can clean, I can have fun. Those days are precious to me and when I have them I love it. The sad thing is that because on those days I take advantage of it and do a little extra the next day or two are almost always followed by extreme exhaustion and pain.

Lunch- I often don't eat a set lunch as most of the times no matter what time I wake up whether it's early or late I'm not hungry for breakfast until late. If I get hungry mid day I'll have a coffee and a snack. In the afternoon I often struggle with wanting to nap and knowing that if I do I may find it more difficult to sleep at night. If I'm having a really bad day with pain then I will nap for a little while but I usually try and lie down but not sleep. If the pain is getting bad by mid day as it usually does then I take my third pill of the day.

Dinner- I'm a very lucky girl and am currently renting a room from one of the nicest landlady's so she invites me to share her dinners. That has been the biggest help for me not only financially but physically as there are many days that I don't think I could or would want to stand and cook. Right before I eat I take one of my evening pills. Once dinner is done and everyone retires to their room I take my next evening pill. This one tends to make me feel a little drowsy and dizzy so I try and not move too much until that subsides. If I have any muscle or joint pain that is to painful to handle then I can take another pill but I may need to grab a quick snack to make sure it doesn't cause stomach pain.

Once I'm settled all I can do by this time is rest. I use my computer, I watch some TV and then if all goes well by 10 or 11 I try and get into bed to start my night all over again and hope for a better day tomorrow but not before taking my last pill for the day.

This is pretty much how my life is right now as I wait for September when I'll hopefully be starting school. Although it doesn't sound like I have a lot going on at the end of the day I'm just as tired as I used to be when I was in school or working. I've been told I'm lazy and that working would be better for me then sitting around the house. Often these are comments from very ignorant people who don't understand what it's like to live with a chronic illness and debilitating pain all day long. Lupus is a very real disease and it is life altering but it's not taking away my life at least not yet.

I find that for me the more rest I am able to get and the least amount of stress that is in my life the more good days I seem to have. So I keep the hope that one day my good days will out number my bad days. I have planned to go to school in September, I want to get slowly back to working full time again once my schooling is over and I hope to one day look back and say "I can live with lupus, I got through it!"

On my bad days it seems as though good health and happiness is a million miles away but I trust in God and I know that there is a reason and a plan for my life and despite this little road bump I am going to get to my goals and I will achieve them.

There is a song by Lonestar that has become my motto in the last little while it's called mountains

Here is the chorus.

There are times in life when you gotta crawl,
Lose your grip, trip an' fall
When you can't lean on no-one else:
That's when you find yourself
I've been around an' I've noticed that,
Walkin's easier when the road is flat
Them danged ol' hills'll get you every time
Yeah, the good Lord gave us mountains,
So we could learn how to climb

©Lonestar 2007

It's true this is my mountain and I'm getting pretty good at climbing!