A Day in the Life with Autoimmune Diseases

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As I mentioned before, being diagnosed with an autoimmune disease and figuring out exactly what is going on with me has been a long process. Starting with a diagnosis of Lyme disease, then rheumatoid arthritis, then fibromyalgia, and possible lupus. All in all, from reading other blogs, I know things could be much worse, and possibly someday they will be.

For right now, I’m taking it day-by-day. Like most people living with autoimmune diseases and chronic pain, every day is different. Living in New England, the winter seems to be much more difficult on me. At the moment we’re awaiting the return of the “Polar Vortex” and my body is already showing the signs that its arrival has begun. For the past few mornings, I’ve woken up around 5AM with extreme pain in my hands and fingers. It starts as pins and needles, but two to three fingers just completely lock up.

I switch on my heating pad, and go back to sleep. Mornings are just not my friend. My oldest child has to be on the bus at 7:20. He happens to be like his mama: he can’t fall asleep, but loves to sleep late in the morning. Getting him out of bed, fed, teeth brushed, etc. is no easy task, and as much as I’d like to stay in bed, I have no choice but to hobble into his room (two to three times) to get him up.

With three children and three different buses, my morning is super fun getting everybody dressed, fed, and out the door. I’ve given up on looking at my mirror before going to the bus stop. The bus stop is luckily in my driveway, but we have a few other parents and children who wait with us. For the first few days of school, I got up early and threw on some eyeliner before heading outside.

That crap ended quickly, and now I go outside in my pajamas, slippers, and a jacket. I now figure, these are my neighbors. I hear them screaming obscenities at each other from their driveway. With everything I’ve heard, they can overlook my bed head and completely disheveled self. After the last bus arrives I go back inside and get in bed. Depending on what day it is, I go back to sleep for 15 minutes, which I know is stupid; or I go back to bed for an hours or two. Some mornings I teach a Pilates class and while it is the last thing I feel like doing in the morning, I have found that it helps keep my flexibility, and 90% of the time I feel better when I’m done teaching.

I can’t lie, though. I love the two mornings a week that I can get back in bed, in a quiet house, and not have to worry about carrying for anyone but me. Does that sound selfish? I really do feel bad about it sometimes. I’m sure a lot of people are reading this and thinking I’m lazy, but if you don’t understand what it’s like to be me, than you just don’t get it.

My rheumatologist tells me that a regular sleep cycle is so important for people with fibromyalgia. I have the typical symptoms of muscle tenderness, migraines, and trigger points. He wants me to work on getting a good night’s sleep. The more I focus, though, the less I actually sleep. I’m back trying melatonin, and it, along with a xanax, helps me relax enough to fall asleep.

I just think people don’t get how difficult it is to have a normal life while dealing with autoimmune issues. I am lucky enough to work from home. If I wanted to, I could work from my bed all day — and some days I do! I go into an office one morning per week for a few hours. I don’t see how I can go back to working a full-time, in-office position. For those of you who do, I give you an enormous amount of credit.

While everyday is different, this cold weather brings on many daily issues. My legs hurt really bad, my right hip is just stuck in one position, and then there are my hands.  Some days the morning stiffness works it’s way out. Others not so much.

I feel tremendous guilt when my kids see me lying down a lot. Today my daughter told me her day was boring because I wasn’t playing enough. I had cleaning to do…not fun. And then I needed to rest…also not fun. The guilt got to me by this evening and I spent the last few hours playing board games with my kids. I may not be the mom who can always go out sledding, but I need to make more time for the little fun things.

Each night I take a muscle relaxer, which has really helped decrease my migraines. I was kind of expecting to feel all relaxed with it, but not so much. Overall, I think it helps, but I don’t notice anything much when I take it. I also take an anti-anxiety medicine. My doctor has talked to me about switching to Cymbalta or Lyrica, because those medicines can help a lot with chronic pain. I’d love to hear from people who have used either of these drugs. The last thing I need is to gain more weight, but if it truly helps the pain, it’s something I have to consider.

I think the point of this post (said in a round about way) is that I can’t plan for what my day is going to be like. Some mornings are so difficult to get out of bed, that I just can’t. I frequently get the eye-roll from my other half. At times I think he chalks it up to laziness. To be honest, my house wasn’t perfect and spotless before my diagnosis.

I would love to make plans in advance, but my best friends know that if I’m not feeling okay, I just can’t keep my plans. Again, I am lucky to have good friends who try to understand, but I don’t have that luxury with some family members. When they ask how I’m feeling, they expect me to say “fine” or “good.” Anything beyond that requires too much listening to the details of what I’m going through. You can’t make people understand if they really are so out of touch with anything you are going through.

Falling asleep is a whole other issue, but I’m working on it. I go back to my rheumy in March, unless things get unbearable. The thing is, I do have a high tolerance for pain. I am suffering, but it would have to be really bad for me to change that appointment. I just don’t know what else they can do for me without starting drugs like methotrexate. While I know a lot of people who have had success with it, my fear of losing more hair and feeling even more exhausted prevents me from giving it a shot.

I’d love to hear about your morning routines and any tips and tricks you have to getting started in the morning with the stiffness and pain.

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3 Comments (+add yours?)

  1. Lupus Adventurer
    Jan 19, 2014 @ 06:43:04

    AM, It seems you are doing what it takes to cope. As for me with my lupus, I don’t have kids at home anymore, and even in Arizona when mine were still in high school, those 7:00 am band practice runs in my pjs, house slippers and jacket were rough, even though I only had to go a few blocks and back home, and back to bed for a couple more hours. Now I work one day from home, and go in to my office the other four, but not until 11:00 a.m. This gives me the time first to drink coffee, wait for morning prednisone to kick in, so some yoga or other exercise, play piano to see if brain is connected, shower, breakfast and then head out to work. Trying to get where I can think clearly in the morning is the hardest thing of the day, every day. I also have a hard time sleeping because of lupus pain and night time neuropathy. We don’t have to live up to other people’s idea of what productive is, and our busy might be a healthy person’s lazy. Don’t measure yourself by others standards! We can only do what we have energy and strength to do. Everything else just has to wait. LA

    Reply

  2. Tracy
    Jan 27, 2014 @ 15:58:00

    To both of you Ladies – well said!!
    I am getting a bit better at not trying to live up to “others” expectations. I’ve been running with Fibro for about 30 years, battling what others told me I Couldn’t do. And yes, while I wasn’t able to do it for as many years as I wish I could – I DID train and become a masseuse, at 41. It lasted for 3 years before my body just couldn’t handle it any more. My more recent attempt at becoming a Medical transcriptionist fell apart though. It would have been so good to work from home, but the stress of the course, and family issues didn’t combine well with Fibro. I had to quit FT work a couple of years ago, and try to keep up the home and Family. It’s rewarding in its way, but I fight the constant guilt of not bringing in a paycheque, not doing MORE.
    Enough pity party 😉
    “A regular sleep cycle”? Not sure when I last had that… Drs truly don’t get it.
    I am on Cymbalta. 60mg/day. I won’t increase it. It seems to help, to some degree, so I’m scared to go without it since pain is still very much a part of every day. I’m debating the pros and cons of that. Reading up on it beforehand, I was somewhat aware of the apparent effects of it on simple brain function. I thought brain-fog was a problem before?? Cymbalta really Does affect it – badly. So, go off and hopefully the pain is still manageable and I can perhaps think again? OR stay on and try to convince myself that it’s worth it. Not Sure right now.
    I do like your statement “Don’t measure yourself by others standards!” And I try to live by it. But I have to say – it’s difficult.
    Best to you both, hopefully a day of comfort and relief!

    Reply

  3. The Composer's Blog
    Feb 01, 2014 @ 21:20:25

    hello, i was diagnosed with lupus when i was 15 an was believed to have it since i was born but i have recently been undiagnosed but the annoying thing is that im still getting the same side-effects. I dont know how to get rid of the pain because unfortunately i have wvd too. What ways do you deal with your pain without meds?

    Reply

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