In Limbo

I seem to be stuck in some kind of sick limbo. I think I’m starting to come out of a months long flare. I say “I think” because I have been very inconsistent overall. One day I can feel good enough to be productive at home or even go out to the store. Another day I’ll feel terrible and be laid out all day. It’s hard to plan my days when I have to wait to see how I’m feeling each morning.

How I’m feeling also swings in both directions within a single day. Yesterday for example, I woke up feeling sick, achy, and tired. After a few hours I started to feel good. I didn’t feel sick anymore, I had energy, and I was very motivated to go out to the store. I was still in pain, but I can often ignore that. I got dressed and went out, only to get hit hard with extreme pain and exhaustion while I was at the store after only about 30 mins. I struggled to get back to my car and drive home. Once I was home, I had to lay down and rest for a few hours. I started to feel a little better after that, but I still struggled to make dinner. I was in a lot of pain and exhausted.

When I wake up in the morning, it’s hard to figure out how to dress because each day is so uncertain. Do I put on my comfy house clothes or do I actually get dressed? Not only do I NOT make plans for tomorrow, but I don’t make plans for today either. Its hard to plan for the day when I never know if I’m gonna be stuck to the couch for the day or feel well enough be productive. Maybe if I’m lucky, I’ll even feel well enough to go out to some stores. So what do I do? I get dressed in my comfy house clothes, get the kids out the door, eat breakfast, then assess how I’m feeling. If I’m feeling well by then, I get dressed properly and make a plan for the next few hours. If I’m not feeling well, I get comfy on the couch with some music and a good book or tv show. Again, this changes throughout the day. I may start the day by going out and about, then come home, change into comfy clothes and rest. I’m all over the place with this. Flexibility is key!

I do think I’m coming out of a flare because I’m not stuck to the couch all day like I was 2 weeks ago. I measure my good days by how much time I spend laying down. On bad days, I spend 95% of my time laying down. If I didn’t have to lay down at all, I consider that to be a very successful day. During this time in limbo, that time is all over the place. I may spend 1 or 2 hours laying down, then get a few hours of being productive, then rest for another 1-2 hours. I don’t mind these days too much because I can still be somewhat productive. I truly hate the days when I am just at zero. That’s when I feel like I’m already dead.

I’m trying really hard to NOT get my hopes up about feeling better because I have been fooled before. I’ve had times where I’d have a week or 2 of feeling good and my mind starts to get used to being productive, then I’d be down for weeks again. So if this IS me actually starting to feel better, I must tread lightly. I usually try to push as hard as I can and rush the process, but that often backfires, leaving me feeling bad again. It is a very tricky game indeed. I am always truly thankful for any good days, or even just a few good hours.

When I feel good, I just want to do everything I possibly can before I can’t anymore. I’m basically trying to squeeze a whole year of living into about 2-3 good months. That’s about all I get each year. It’s not a fun way to live, but it has taught me to truly appreciate those good days. My husband always tells me to slow down and pace myself, but I can’t. That’s like telling a quadriplegic that their body will work for only a few months and to take it easy. They aren’t gonna want to walk slowly. They are gonna run, climb, and jump until they can’t move anymore. That’s how I feel about it. I’ve spent so much of my life laying around wasting time and feeling miserable. Now I want to live life fully!! I simply don’t want to miss out on life anymore. I want to experience all the things I normally can’t.

It’s a little hard now that it’s winter because there’s not much to do outside. In the summer, I take the kids to the beach or the park. We may fly kites, have picnics, shoot rockets, ride bikes, go fishing, and all the special little things that I’ve always looked forward to doing with my kids. Its slightly frustrating that I’d feel good during the winter because I’m limited by the weather. It is what it is and I have to just go with it. Maybe I will just use it to finish unpacking my house since there are still boxes to empty, sort the contents and put everything away in a neat and organized way. I learned the hard way that if I don’t do it right the first time, it will stay wrong for a very long time.

I will patiently wait to see where this takes me. If I am truly coming out of my flare, then I will simply enjoy the ride and my new temporary freedom. If it is just a tease, then I will do my best to enjoy whatever good days I am granted. I will try not to be bitter about it. I will continue to practice mindfulness to stay at peace and enjoy all the beauty around me. I will continue to try to find joy in every day.


4 responses to “In Limbo”

  1. Thanks for being so candid with your illness and your life. Wondering if you could get one of those organizers and/or interior decorator kind of person to come in and help with all of your unpacking etc. That way you could reserve more of your energy for the wonderful family you have. Just a thought that you’ve probably already explored. Hope you’re ending that prolonged flare! You deserve a break from this debilitating hell. My daughter (36) just had the pfizer covid vaccination. She has sjogrens, mcas, eds, and pots. I think I named most of them. It sounds maybe worse than it is since she’s doing really well right now, working full time, etc. But then again, I’m not the one with these. It’s all relative. I’m a little concerned about a possible reaction she could have to the vaccine. Are you planning on getting it? It was required for her position in research at Phoenix Children’s Hospital. Take care and glad that you seem to be on the other side of this flare. Fingers crossed.

    Liked by 1 person

    1. That’s not a bad idea. I have so few boxes left that it wouldn’t really be worth it at this point. I’m glad your daughter seems to be doing well. I know of many autoimmune people who’ve had the vaccine and are doing just fine. I plan to get it as soon possible. Thank you so much for your response. Be well


  2. I totally understand what your saying Meredith, once again you’ve explained how Sjogrens can change your days upside down! You have had a few stressful situations…..moving house and an operation with difficulties. It’s going to take alot longer to get back on your feet, you do your best! Maybe once springtime arrives you will be out of this flare and be able to toodle around your beautiful house and garden at your own pace and get it organised the way you want it. I wish you and your family the very best ❤

    Liked by 1 person

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