Cleanup In Aisle 7, Please

RA Guy Adventures of RA Guy 27 Comments

Yesterday morning, I started my Friday in my usual way: I left my house at 10:00 am, in order to go to physical therapy. (I rarely ever make commitments before lunchtime, but I will make an exception for PT.)

During my session, we did some of our regular therapies: heat, ultrasound, and electrotherapy. I was a little surprised that toward the end of my hour and a half of treatment, I somehow managed to fall asleep, even though strong currents were being applied to a major contracture which had formed in the muscles along my upper back.

Yes, I was tired…but I was looking forward to the afternoon: my first afternoon of the entire week that was completely free. Finally, I could start my weekend half a day early. I had made it through another week!

But first, I would stop by the grocery store and pick up a few items, before I headed back home. Physical therapy and grocery shopping often go hand-in-hand. First, because they are located in such close proximity to one another. Second, because the timing is optimal: I find non-weekend late mornings the best time to do my shopping, as this is usually when the store is the least crowded. (I wouldn’t dare step foot in a grocery store on a Saturday!)

There I was, weaving my way throughout the aisles, with no problem at all. Two boxes of Barilla thin spaghetti. A bottle of (hot) ketchup. Some saltine crackers…regular and wheat. Six containers of fresh–and heavy–fruit juice..but as long as I got them into the shopping cart, that would be the end of my efforts. (A bagger always loads the bags into the taxi for me, and then on the other end the driver unloads them to my front step.)

And then, something happened as I turned into the next aisle. My energy levels dropped down to absolute zero. I could barely move. My first impulse, as I stood there frozen, was to ditch my shopping cart, leave the store, grab a taxi, and go home. But I knew that I didn’t have even close to the necessary strength that would be required to pull of this series of events by myself.

The more I thought about things, the more I realized that hanging on to the cart was the only thing that was keeping my upright. And as I became less aware of what was going on around me, there was one aspect of the environment that registered in my mind like never before: grocery stores rarely, if ever, offer a place to sit. And while I still can’t believe that I even considered such a thing, I started to ponder the possibility of just laying down flat, right there on the floor in the middle of the canned vegetables aisle.

But I called my partner on his cell phone, and told him what was going on. When he too suggested that I just drop everything and go straight home, I told him I couldn’t even do that. “I’ll be right there–stay where you are,” he told me. And just as quickly as the call started, it ended.

I somehow managed to get to the next aisle: refrigerated beverages. I pulled a bottle of Gatorade off the shelf, and gulped it down, all the while imagining those old-school commercials (back in the 80’s when Gatorade really was just for athletes, and had a strange taste) where pixelated squares showed a body’s electrolytes and whatever else being replenished. Nothing seemed to happen, so I started eyeing a can of Monster Energy Drink. I decided against it though, as I started to envision the nightmare scenario that could result from having so much caffeine and taurine in a body that could barely even move.

Before I knew it, I saw my dedicated partner nervously speed-walking down the aisle toward me. (And I swear, he got there so quickly, he must have flown to the store.) In a matter of minutes I was on my way back home, and the tears were freely flowing. In the past I have had many occasions where my energy levels have dipped when I’m by myself out in public, but it had never been as severe, as overwhelming, as the incident that had just taken place.

Going through such a severe episode while in the comfort of my own bed is something that I’ve only just gotten used to, after many years of “practice.” Having to do it while I was alone in a store was something that I had no experience doing. In the end, though, I made it through everything that happened, and my partner’s quick actions showed me that I was never really as alone as I might have thought.

I spent the rest of the day resting and sleeping in bed; something that I plan to continue to do through the rest of weekend.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 27

  1. Linda Robinson

    RA Guy,

    This is just heartbreaking. I read your post yesterday and didn’t know–until reading this piece– if you had fallen in the store or just– (well, I don’t know how to word it)– THIS. I’m so puzzled what happened here. I’ve had zero energy days and have felt completely zapped more than I care to count, but this is a whole new level. Does it usually hit you so suddenly? So sorry for what you went through but so happy for you that you have the support of a wonderful and caring partner (as do I). What would we do without them? <3 Hugs to you.

  2. Kirsten

    Yikes. I had that happen a few weeks ago while grocery shopping. I was iffy when we went because we hadn’t really eaten all day and I was in a fair amount of pain but decided to go anyway. Besides, we could snag something to eat when we were done.

    5 minutes into being in the store, I was shuffling and half asleep. I contemplated going back to the front of the store to see if the motor carts were back yet, but decided to just tough it out.

    I am so glad that I had the boyfriend with me. By the time we got to the car, carrying grocery bags wasn’t even a thought that hit my mind. I was more than half asleep going through the store and heading home. I drank some gatorade and scarfed down a breakfast bar before taking another nap. I was able later on to head back out for something to eat, but that day was horrible.

    I am so glad that your partner was so close and able to get there so quickly. It’s wonderful to have partners that are so dedicated and care so much about us, isn’t it? I really think they are the unsung heroes of the chronically ill community 🙂

  3. Post
    RA Guy

    Hi Lynda,

    I’ve had sudden energy drops before, but never one as drastic as what happened yesterday. I think the fact that I was out in public, alone, just made it 10x worse.

    I’m glad that, with the help of my partner, I passed through the episode safely. I thought of asking help from people who were around me in the store, but my mind was racing so much, I don’t know if I would have even been able to explain what was going on.

    I’m dedicated this weekend to staying in bed and reading a good book. This always seems to do wonders!

  4. Carly

    Hey there-
    Yeah, I saw your post yesterday too but I thought you’d meant that you’d fallen.. at least when you fall though there’s a clear reason what’s going on. Sometimes I have this happen to me and I burn up so badly in the process that I get sick to my stomach, I usually end up lying on the floor- no matter where I am. I’ve had to lie on the bathroom floor in friends’ houses until it passes. 🙁 I’m sorry it happened in the store but it is absolutely wonderful and gives me warm fuzzies that you have an awesome partner who was able to be there for you as quick as he was. I hope you’re feeling better.


  5. Elaine

    I have been there before & it’s very scary , I rarely go out by myself anymore because I don’t want to have an episode alone. Glad your partner is so understanding & supportive !

  6. Cindy Batie

    Almost sounds like agoraphobia panic attacks on top of the RA . I have this hAppen often just bottom out
    several autoimmune diseases too including
    RA but gotta say Having a tranquilizer can pull me through what i am out doing. I so get u though been through so much. God Bless

  7. MamaNym

    How scary! What a wonderful guy to come to your rescue so swiftly – he must have a superhero cape hiding somewhere! I hope you’re feeling better soon, and that that’s the last time you have to experience that, especially alone!

  8. Leslie C

    Oh RA Guy, I’m so sorry. I have experienced this so many times recently and it does leave you feeling defeated. Sounds like your partner is a keeper 😉 my husband can now see the “I’m done” look when we are out and he jumps in to action, “check please!”. Today we took the kids to my moms so we could have a date. Evening dates are almost never do I suggested lunch. We went to our favorite Wine Bar & Bistro. David suggested we check out a furniture store after lunh and I agreed. Halfway through lunch he realized I was draining quickly and said he would rather we go home do I could relax <3

  9. Donna

    Hi RA Guy….I’m fairly new to your blog but I am a lifelong RA warrior (41 yrs and counting!) I just want to say I wish I could give you a big hug. I, too, have been shopping with “relative” little pain, etc and then in the back of the store (it always has to be in the back, doesnt’ it??) I just feel that huge exhaustion hit and all I want to do is get to a chair or be carried out. It’s maddening. And so perplexing, esp if it happens on what I consider a “good day.” And it has to be a good day or I wouldn’t be out and about anyway, right? I’m sorry you had that experience and I am so grateful you had swift help; hearing how supportive and concerned your partner is really truly brought tears to my eyes. I’m also sorry your fatigue has ruined your free, longish weekend. Rest well and I hope the coming week is a better one for you.

  10. Jerry

    I’ve had those episodes before. My wife can tell when I’m going through one because I get really pale (well more pale than usual since Im mostly Scandinavian). I can tell myself because I get really light headed and almost pass out. I’m happy that you made it though and you have a great partner who cares for you. We all need someone who cares and understands!

  11. Heather

    Wow RA Guy, when you say “The Next Adventures of..” I don’t expect this type of adventure 🙁 I’m thankful that you’re ok & that your partner was quick to get to you & get you out of there. I hope that you will make an appointment to get checked out on Monday. For me, you’ve brought up a good point, that we all should make an emergency plan. We should all have someone we can call & get help from, and a backup plan if necessary. The feeling of such an episode may leave us somewhat confused & disoriented, so a plan in advance may help. Thanks again for sharing your experience & I sincerely hope that this does not happen again.

  12. Tabatha

    I am so glad your partner was able to come to your rescue. Before I separated from my husband, (this was 2 1/2 years after diagnoses) I used to do all the grocery shopping and seldom would he come with me. However, I would call him when leaving the grocery store and ask him to meet me at the bus stop near our apartment to help me carry the four bags of groceries that I inevitably always got each week. Well, more often than not, he wasn’t there and I would invariably end up walking the roughly 1/4 mile back to the apartment with the quite heavy groceries. Most of the time, he would meet me about halfway home, with the dog, and finish carrying the other half of the groceries. But this was always on a Monday, and we had standing dinner plans on Monday evenings. So I would then get done and have to prepare dinner on top of this. So it got to the point I would HAVE to take a nap after this trip because of the exhaustion and pain that would set in after my weekly grocery excursions. I really don’t know if he ever really understood exactly what those trips would do to me each week, how weak and pained I would feel. But needless to say, one of the reasons I left was the lack of support I received. You are so, so very lucky to have that partner who understands and supports you, and comes to your rescue as he does. It truly can make all the difference in how you handle your condition, both physically and mentally. You are truly blessed, RA Guy!!! Needless to day, I no longer shop like that anymore; and seldom, if ever, go alone.

  13. Gillian Pidler

    Hi RA Guy, I’m so sorry that you got hit with the fatigue so hard while out alone. Your partner is amazing & you are clearly blessed with someone who understands so clearly your needs.

    It’s so hard trying to explain to someone who doesn’t live with this, just how utterly debilitating the fatigue is. I really feel that it’s the worst part, at least the pain we can deal with and make a little easier right. The fatigue just hits, out of the blue, & there is nothing you can do other than wait until it passes.

    I no longer do the big supermarket shop in the store, I do it all online every fortnight, this has been a huge Godsend to me, as I still get to ‘shop for my family’, but without the awful pain and exhaustion at the end of it all. I have it all delivered & 9 times out of 10 someone is here to help me take delivery and put it all away. My husband, who is equally as amazing as your partner, does a top up shop every evening for anything we need, he also does all the cooking these days & is very understanding of my need to rest.

    Enjoy that book this weekend 😉

  14. Deb aka abcsofra

    The falling asleep during PT was a warning. I was sad to read you having this happen but so happy your partner pulled out all the stops and ambulanced over to you. Now that is a true love! Feel better, read hearty and rest up. I swear that these drat diseases can never ever be defined…never!

  15. Linda P.

    Like Jerry’s wife, my husband can always tell when my face pales that I’ve been suddenly been hit with the type of exhaustion you mention. I haven’t been on a major grocery shopping trip in a long time. I fear just the kind of episode you experienced since I can’t predict when such an episode will hit. I do of course get out, but I’m fortunate that my husband does the grocery shopping.

  16. Lene

    Holy crap! I talk of crashing, but that’s an extreme version! I’m so glad your partner was able to come so quickly. Rest up and be good to yourself.

  17. Lana

    I am sorry that this happened to you RA Guy. I have found myself in this sitution – not as serious but I have. It is frightening. Lately, my hands have been an issue. I am always dropping things. Sometimes my hands shake. It is most notable when I have to write. The worse my RA gets, the more scared I become. It has been four years and I am not sure how things will be four years from now. I have just taught myself to bottle it all up. Please rest up and be kind to yourself. You are in my prayers.

  18. adrienne

    I am so sorry this happened. It is always so scarey. I have had it happen on jam packed public transportation and was lucky that my partner was with me. I just wanted to sit down and didn’t care that there were 100s of people standing around me. My partner asked someone to get up so I could sit on a seat. It is hard to explain to folks that this can come on so quickly and that one minute you can be fine and the next you can need to sit/lay down. NOW. Before you fall down. I am glad you are okay and taking it easy this weekend.

  19. Daniel W.

    i have been having these same issues lately. I have had R/A for 29 years and never had this problem till recently. Was driving car when one hit I was 5 miles from home and at 40 miles per hour didn’t think I was going to make it. Scary as hell. Glad your partner was there for you. Hang tough it gets worse. lol Is it possible?

  20. Ann Brazeel

    I feel so bad that you had to experience this, but glad you have someone special to come to your rescue. This has happened to me to some extent since before my official RA diagnosis. Profound fatigue was my first symptom. But now, 5 yrs later, these episodes are much worse, it’s like someone flipping a lightswitch and I go from being somewhat OK to “I’ve got to lay down NOW!”. I almost never go out by myself and when I do it’s to do something like go to the drive-up window at the pharmacy. Sorry this happened, but learn from it and be safe and have someone with you. You could have fallen and………..well,let’s not even go there!

  21. Snow

    I hope my partner is capable of being so thoroughly understanding and well prepared and compassionate. My household is still adjusting to the diagnosis and no one is liking it much, including the dog who misses her long walks with me.

    Thanks for being a voice of sanity in all the RA chaos that my life has become. You have no idea how helpful you are.

  22. Judith Clark

    RA Guy, sooo sorry this happened to you. It’s just not fair at all. There ought to be a warning light that comes on 15 or 20 minutes in advance that flashes “IMMENENT SYSTEMS FAILURE,” but there isn’t. I’ve had a diagnosis of fibromyalgia since 2009. I’m not sure that’s all that’s wrong with me. The sudden attacks of bone-crushing fatigue that occur without warning just started in the last 3 months. OMG! How does a person deal with this? Before, I was good or bad, Now, I’m generally not so good, but never know when I’m gonna be FLATTENED! My hubby of 41 years is a Vietnam Vet with lots of problems of his own, disabled, and now has some kind of auto-immune disease. I was a social worker and college professor before my illness. So we are some pair! He can go out some. I am now scared to go out at all due to the sudden crashes.

  23. Beth

    I read your post with such sympathy for you and such surprise as well because this happens to me and nobody seems to believe it, not even my rheumatologist. It comes on so fast and there’s not a thing you can do but stop in your tracks. I don’t have a partner to call so usually end up leaning on my cart until i can shuffle to the restroom and collapse in the stall in private. Eventually i can make my way back to the car and get home, but it’s so frightening and frustrating. I’ve never gotten a good explanation why this happens so out of the blue an without any real warning. Does anyone know? And people wonder why i don’t like going places anymore!
    Take care everyone,

  24. Raini

    I’m sorry you had such a terrible experience…especially in public. We can handle these things when we are home, but in public makes them so much harder, as you said.
    When I was still working, before my dx, but after my symptoms started, most days I would have this period of time where my mind would be ‘gone’! I’d be sitting at my desk, and it was almost like a fugue. I would “come to” after a period of time and not know how long I was gone or what had happened. It was so bizarre!! I had no idea what was going on with me, of course, and thought I was losing my mind! For an hour or two after I “came back”, my body felt so heavy, it was an effort to turn my head! Man I hated that. I’m so glad I don’t have to work anymore. I don’t know how those of us do it. God bless, all <3

  25. Linda

    Oh my this happened to me yesterday in Kmart with my seven year old! It was very hard to explain to her we had to go now! It Was so frightening as not only was I worried about getting me home safely but more importantly her. i am fairly new to ra and need to give my husband the heads up now I know it really does happen and I’m not just being soft

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