I used to be the person that could juggle a million balls in the air. I wrote a chemistry textbook, made prom dresses for some of my students, taught high school full time, had a toddler and was pregnant all at the same time during one point in my life.
Not only can’t I do that anymore, I can’t even begin to think about doing that.
I’ve never really identified with people that talk about “flares” – I know these diseases ebb and flow and sometimes have been worse than others, but I never felt like I had “flares” – I felt it was fairly constantly bad and worsened slowly over time, not the all of the sudden hit really hard like people talk about with their flares.
Except now I think I’m in the middle of one.
Monday, Tuesday and Wednesday at work were just about the most miserable I’ve ever been. I was so fatigued that I couldn’t keep my eyes open. I didn’t feel safe driving the 10 min back and forth. I couldn’t focus on anything and got zero done. This is far worse than even my normal level of semi-debilitating fatigue that I experience 3-4 days out of every 7.
I promise – there’s a point to the following description of my last few days – and it relates to the title and opening of this post…so just hang in there! 🙂
It’s Spring Break here and the kids were with their dad through Wednesday morning – so thankfully our schedule is a little lighter than normal. Monday I did take a softball team’s pictures in the evening – took about 45 minutes. Then I got a bowl of fro-yo and sat at my son’s baseball practice for 30 minutes (it was between the photo shoot location and our house and it was 80-something degrees out, which was heaven after the winter weather, so even though I was exhausted I took the time to do it).
The rest of Monday, Tuesday and Wednesday were spent completely on the couch (well, I did take my daughter to get her hair cut and sat for an hour in the chair chatting with my friend, our hair stylist, and then I laid on the gymnastic mats for an hour and a half at the dance studio while my daughter learned a new solo – neither of those activities should have been very tiring, yet they were exhausting).
I took Thursday and Friday off as vacation days to hang out with the kids while they’re on their break. Thursday was a rainy-dreary day and we all slept in and it would’ve been tempting to lounge around all day, but my son needed new tennis shoes and it’s difficult to find time to run to the store with all their activities, school, work, and the time they’re at their dad’s house. So we went out. We were gone from the house less than an hour and a half. We went to two stores and had a hamburger at lunch. There was minimal walking, even sitting while he looked for his own shoes and tried them on (sidenote – I had to buy my son 8.5 men’s tennis shoes – why is he getting so big so quickly and why are adult shoes so much more expensive than kids?)
That’s it – less than an hour and a half, two stores and lunch, minimal walking, very minimal effort, and by the time I was so in pain and fatigued that I spent the rest of the day and evening on the couch. I slept for a couple of hours in the evening.
Friday was back to sunny and gorgeous. I fixed a small lunch for the kids and then loaded the dishwasher with one load of dishes to help out my husband (he normally takes on the vast majority of the housework because I just can’t). In the late afternoon I was taking pics of a high school baseball team – again, took less than an hour. Minimal walking. All I did was stand, squat, sit and hold my camera for less than an hour. I then ran my daughter to her friend’s mom’s work so that she could go to a movie and spend the night with them.
And for the second day, I was so in pain and fatigued I spent the rest of the evening on the couch.
This morning I got up and dropped my son off for his boy scout camp-out (in my pajama’s…one of those “I don’t have to get out of the car” mom moments). Since my daughter was at her friend’s I turned my ringer up high on my phone so I’d hear if they texted (we’d left it open-ended as to when I was going to pick her up – one of those “see when they get tired of each other” things) and went back to bed, getting up about 11:30.
So since Wednesday night to now (Saturday around noon), I slept 11.5 hours Wednesday night, 2.5 hours Thursday evening, 11 hours Thursday night, 8 hours Friday night and 2.5 hours Saturday morning. Each day I’ve left the house and each time after 1.5-2 hours of minimal activity have been completely drained and can’t do anything else.
This isn’t one of those “if you rest too much it just makes you feel more tired” moments that everyone likes to tell me about – I’m not resting out of boredom or luxury, it’s a physical necessity. I cannot continue without it.
This isn’t one of those “if you just get out into the nice weather you’ll perk up and forget about being tired” things everyone likes to suggest to me. I was out – Thursday, although rainy out, I was doing something I enjoy – spending time with my kids without anything else to do, not need to rush, nothing we have to do next – just time with my kids. And I couldn’t last more than 1.5 hours. Friday was a gorgeous day out and I drank in the weather as I took pics of the baseball team – that’s something I would have been energized by in the past. But now it leaves me completely wiped out and headed back to the couch in pain.
So the connection to the title and opening of this post – during this week of what I now think is probably a “flare,” I have pretty much flaked out on everything other than what I described to you. That’s it – this description of what I did this week is everything I did. I’m not leaving out all the little details that we do without thinking. This is it. I did shower every-other-day (I would like to every day but I just literally don’t have the energy). But other than that, nothing – no cleaning, no make-up, no laundry, no photography work on the computer, nothing. The activities I described above and laying on the couch or in my bed.
That means all the other things I was supposed to do – get the spirit wear order in for my son’s baseball team, returning emails and phone calls, edit the photographs I took this week, straighten up the house on my 4-day weekend, do some of the activities I’ve been putting off doing with the kids (like finishing Shana’s artwork in her room). None of it has been done. I couldn’t even muster the energy to write a post for this blog until today even though I wanted to do it several times during the week.
I’m constantly apologizing to people when I do get around to returning their email or phone call – “I’m sorry it took my so long to get back to you.” I know that I must appear to be the biggest flake out there – people have got to be thinking of me as unreliable and flaky. But I can’t help it. That’s not me, that’s not my personality, that’s not in my nature…but it’s what I am at this point in my life.
I already agree to so little compared to what I took on in my “former life” (how I now think of my life before the symptoms got this bad – I can’t even say “before I got sick” because those dang symptoms crept up so stealthily that I can’t point to a time when I “got sick”). So I agree to very minimal responsibilities and even those I feel so flaky on all the time.
So when I saw this picture on Positivity In Pain’s facebook feed the other day I knew that I needed to write about how it applies to me.
Maybe I should put it on my outgoing voicemail message or the signature line of my email – some disclaimer that “I’m so sorry for my apparent flakiness, but that I promise it’s not intentional, it’s due to the physical limitations I now deal with due to my chronic illness.” But yet I don’t ever want to be seen as using my illness as an “excuse” – I mean it as an “explanation” – which are very different in my mind.
My husband said it absolutely best yesterday – and I love him even more than before because he did so. He has a spring cold right now and after work was sitting on the other couch and said how much he hated spring colds and how he was so tired. I turned to him and said “at least you have a reason for being tired – you worked all day and you have a head cold…I’ve done essentially nothing all day…I don’t have a reason.” (By the way – that statement was my guilt coming out – yep, the one that I’m working on getting rid of but I doubt will ever be totally gone!)
He said “you do have a reason – you have Sjogren’s”…I could’ve gotten up and kissed him I was so happy to hear him “get it” and not only “get it” but be able to reassure me about not needing to feel guilty for it. Except I was too tired and in pain to move.
I feel for you I do, but as someone who also has an Autoimmune Disease, your telling yourself the answers. You feel worse after the things you are or aren’t eating. AI stems from gut health & things like hamburgers which are processed & buns filled with gluten are going to cause all sorts of flare & inflammation.
I appreciate your input and I do acknowledge that I could eat better.
However, yesterday after writing the post and then again this morning I feel way better. Not most people “normal” but at least “my normal” – still not “right” but I could go and do things and enjoy my kids, husband and the weather and didn’t feel like collapsing until bed time. I felt no where near the flare fatigue that I’d had the previous 5 days. And I had eaten a ham and cheese sandwich on Italian bread for one meal and a cheese/tomato sauce shell pasta with hamburger dish with cheese/garlic biscuits for dinner (made by my fabulous husband). All of those things (bread, cheese, tomato, pasta, biscuits, etc.) were normal items, non organic and the biscuits were from a boxed mix, and all on the “causes more inflammation” lists. This is consistent with my experience – I’ve kept track of what I do and don’t eat and unfortunately it has no correlation with how I feel. I know that it does for many, many people, but for me it hasn’t been an answer or even a helpful hint.
So sorry to hear how it’s going for you, but want to reassure you that this is indeed what a flare can be like. A sense that your limbs just won’t move, or that you are moving in slow mo. Absolutely what it feels like.
And you did do quite a bit of physical activity. An hour and a half of laying mats? That’s a lot.
And I recognize the weird feeling of being flakey. I used to be a big multi-tasker who always took on responsibility, and responded to an email right away. Now I have learned to say, with a smile, “I’d like to , but sometimes I’m not reliable”. And so if I agree to do something, I will explain that I hope to have it by a certain date, but please understand I can’t guarantee it.
Again, sorry to hear you’re feeling so tired.
Heehee…I was laying ON the mat for an hour and a half watching her…I wasn’t actually doing anything! 😉
Thank you so much…yesterday and today have been much better!
Oh, phew, that’s better.
I hate how people think I’m flaky. Like, I’m trying to “get back out there,” and make friends, so I was looking around on meetup.com today, but one of the groups that you had to apply for had a policy that if you RSVP’d yes, but didn’t show up, you were automatically kicked out. 🙁 I thought it would be a a nice way to meet new people because they had a lot of meetings, so I could do what I could, but the fear of being kicked out for having a flare (like I know when my neck is going to “act up” due to my Botox shots wearing off or just getting them, but there are other flares that I can’t help!) was just discouraging.
And I was so proud of myself for watching a 10 minute pilates video today and doing like half of it this morning 🙂
I did notice that I do find myself saying “I’m sorry” and apologizing 100 times more each day than I did before I developed dystonia!
So glad to hear you had a better couple of days after your string of hard ones.! I struggle w/the “flare” issue too..or I did, until I had an experience somewhat similar to yours. I quit teaching almost two years ago to try and manage this beast and try and establish a “new normal.” Toss in there a travelling husband, four kiddos (three teens) and one pre teen with her own rare chronic disorder….and it can be a free for all. Well…long/short- hubby is in oil, and with the free fall in the market- we knew I needed to try and find something in case layoffs hit our home. Just the job search utterly exhausted me. I’d be doing his resume/my resume…and a nap. Hard to really feel positive about selling myself when I need a nap to get thru an hour of typing on the computer. It was an indescribable fatigue. I couldn’t smile. It hurt. I’d want to sleep, but couldn’t cause the sheets hurt my skin. I’ve struggled so much w missing the work interaction w/colleagues-it was such a big part of me…gone. So I looked forward to that- but if I couldn’t get thru this, how could I possibly have any meaningful interaction with them? If I ever found a job? I’ve been diagnosed w/Lupus for 10 years, SS for 3; but am just now feeling comfortable opening up a discussion about it. Because – like I’m guessing others- I didn’t know the full extent of how it would affect me. And I didn’t want it to define me. But as my husband came home and saw me in tears trying to tell him how awful I felt; and how I didn’t want it to define me- he said…”it doesn’t. But what you do with it does.” Tender mercies from a hubby who gets it.
this is like reading my own life… you described it All so perfectly. Though mine isn’t Sjogrens. Gut health is important, but I can honestly say that having been out of necessity, on a GF DF strict diet for 4 long years, it has not changed my autoimmune symptoms and made them ‘better.’