I Forgot

 

Oops, I forgot. For a few moments or what stretched out to a few hours, I thought I was living the life of a normal person. Who was I kidding though, forgetting that living with an auto-immune disease could ever really be normal? Thinking that I had some unlimited source of energy enough to tackle a huge kitchen project without consequences? Oops on my part, indeed.

I forgot that I don’t have unlimited spoons but have a set number of them each day, each hour, each minute. Nearly forgot what it is like not to have to watch everything I do for a few hours and just do what other people around me do on an everyday basis. To be able to feel good without any fatigue or joint pain and enjoy whatever comes my way. To be able to look at what others do around me and actually say, I can do that, too without feeling that pang of jealousy that inevitably comes watching from the sidelines.

I forgot about all the side effects from my various medications: the hair loss, headaches. Forgot about yet another upcoming joint surgery or how puffy my face is getting thanks to the steroids.  Forgot about how much easier it is to play down how I’m really feeling to people knowing most don’t really want to know. Who can blame them, really? I would like to forget as well.

I kind of feel my body cheated me by saying, “Here’s a taste of normal,” and then pulls back, says, “oops, just kidding!” you aren’t normal and never will be again. So just for a moment, I forgot that I was living with an auto-immune disease that will never go away.

Maybe it was for the best that I forgot though — as crazy as it sounds. Maybe, just maybe, my body and mind needed to forget briefly so I could recharge and start again. To be ready to face the challenges and forge ahead, adapting to whatever this disease throws my way. If that is the case, I hope I “forget” again soon, because however short, it was nice.

 

Article written by staff writer, Christina Stevens

 

Christina is married with 3 young children while managing moderate to severe Rheumatoid Arthritis. While technically a stay at home mom, she volunteers as instructor chair for a weekend event with Women in the Outdoors, an amateur radio operator and writer. You can find her on twitter at @ss_sunset or on Facebook at @ss_sunset

©2019butyoudontlooksick.com
  • Shinedown101

    i believe in you

  • Linda L Halvorson

    I have had MS since 1976 and use a scooter full time. I have used a new drug Ampyra since May intended to help ms folks walk. It will never get me that far but improves nerve function for physical therapy. It reduces the immense fatigue and thereby my depression. I attended my 40 class reunion and traveled a lot this summer and it felt fantastic.

    I am sort of struggling though after all the fun of summer. I don’t feel like doing beadwork or reading mysteries which had become compensation for active pursuits. I remain thankful for this medicine but stuggle with the circular grieving of this condition. A classmate with RA shared this site with me recently. The plus side of the scooter at the reunion is I had at least 20 people talk to me
    about their invisible conditions. I almost didn’t go because of that thought “I’ll be the only one with …..”

  • DollieC

    I was just recently diagnosed with Lupus and Fibromyalgia in August 2011, if feels good just to know all this was not in my head as I was told so many times. I love when I have the energy to visit and play with my 3 energetic grandchildren. Its takes me a couple of days to recoup, but I thank GOD for the time I had with them.

  • Katie

    This made me cry, it’s so relatable.

  • Jo

    Thank you for sharing this!

    I’ve lived with aggressive Psoriatic Arthritis for just over a year now. It’s attacking the connection points of my flexor tendons, and my hands and knees faster than anything else. The worst part is that the medications are destroying my cognitive ability a little at a time. For a university student, that’s a nightmare.

    When I was overseas in Jordan this summer on an archaeological dig, there were days when the dry heat made it nearly painless to go for a walk, climb rocks, or just enjoy the sun.

    Sometimes, if I sit really still, I can forget that it will hurt once I start to move again.

  • Elaine

    Hi,

    “I Forgot” is my story too. I pretend most of the time, probably too much of the time. After reading others’ stories, I am hit flat in the face with the reality of me.

    Just this morning I tried literally walking my dogs, but could not. Hadn’t gone very far when my breath became labored from actually trying to take a walk and the pain was like the weight of the world was sitting on my hips pressing me downward. I resigned and got back into my scooter and let the dogs go for a walk, and I rode.

    Thank you all for posting, I needed to know that I am not being lazy, that I am not faking an illness, and things that use to take me an hour to do, now can take up to a day to complete.

    But the good news is I am still breathing in and out.

  • It’s nice to forget – to not worry for a while about how much energy you’d budgeted for a set task, or how much you had to save for later. But if you’re like me, you sure can pay for it later when there’s nothing left!

  • lara

    i love it too! As I drive home from work i think of all the stuff i’m gonna accomplish, unload the dishwasher, vacuum, cook dinner, take a walk, blah blah blah….ya know, all the simple things ordinary well people do with out consideration.

    as i pull in the driveway, I’m exhausted just from mentally listing all the things i think i’m gonna do! ha!

    normal is so passe…
    thanks for the column, nice to know i’m not the only un-normal normal person out here.

  • Debby

    Chronic pain and fatigue takes awhile to come to terms with and hearing how someone else can cherish the “good ” days encourages me so…having an “attitude of gratitiude” helps too…thanks for making me feel normal just by being part of this “cult of pain”!…Gentle days!

  • Wow, Christina, did this article ever hit home! I go through this at least 3 times a month, sometimes more. It seems I can never remember that my body doesn’t function as it used to. Great article!

  • JUDY

    i can totally relate to this post! i have had fibro for 15 years now. i have a wonderful rheumatologist, who is so supportive. i had an almost normal day yesterday. had a visit to my pain management dr., and came home and…went out to lunch, to the library, and to wally world. believe me, i am paying for it today! i have a pain level of about 8, which my pain meds help control, but some pain just never goes away. oh, well. just gonna wait till the next time! multiple spoons to you!!!!!!!!!!!

  • Deb

    i LOVE when i forget !!!!!! It happens every once in a while and its such a beautiful glorious feeling !!!! i can live in the moment and enjoy whatever it is im working on and i relish it ….

    great article !

  • Ricki

    I can so relate to this! I have MS, Lupus, and CKD, and currently on PD (dialysis). I had more energy yesterday than I have had in the last two years, actually organizing my closet and unpacking boxes from our move almost 6 months ago! I knew it wouldn’t last…but it was so nice to feel almost like my version of a “normal” person again!

    Ricki

  • Alice

    So well put! I was so used to having no limitations that it took a lot of cancelled plans to figure out what I really could do. Every once in a while, I just decide I want to have a piece of my life back. Wearing heels, going to a concert, etc are all things that I just decide to do, regardless. Of course, like all of you, I pay for it, so I try to rest up before and prepare for recuperation. We still have to live, right?

  • Karen

    Sometimes I don’t know if it’s the disease or the pain meds from the evening that make it so hard to get up in the morning. But my legs have been hurting so much at night, i have to do something to help them. I have MCTD, fibromyalgia, and raynauds, and migraines. I am working w a homeopathist +, amazing work w lasers and homeopathy and I have a fantasy I’ll be “normal” again. I hope it’s not just a fantasy. I also have a Rhuematologist and a neurologist so I’m working all angles! Today, the right side of my face is cold and tingly, migraine without pain or a precursor to a migraine, I never know. My head hurts but not a full blown migraine, tired but need to get up. Ugh

  • Carol

    I get days like that. Recently I have been gardening and feeling good until I forget and saw or throw something with my right arm. The arthritic shoulder reminds me that I can’t forget and then it reminds me when I try to sleep at night.
    The pain stops and I continue until the next time.

  • I so know how you feel.. I to live with a unnoticeable condition. I have maniac depression, agoraphobia, anxiety disorder with panic attacks, and OCD. it sucks being me but sometimes i forget that i have these conditions and attempt to live a normal life. Its nice to live a normal life every now and then but it doesnt always last reality always comes back to me…

  • Laurette Oliver

    I have rheumatoid arthris, fibro, asthma, diabetes (supplemental) and many other health problems. I would love to have one of the days when I can convince myself that I am normal again. I am teaching myself to do what I can and let others do what they can without my reminders, help or interfernce. I get better at this all the time.

  • Susan

    I have had Multiple Sclerosis for 16 years. I cannot work, but I am able to volunteer somedays working with my state’s animal shelters. Somedays is the operative word, because there are days that I can’t drive and days I only feel like staying in bed. I plan on going places in advance although I realize that I may not be able to go that day after all. MS affects us all in different ways, so I do feel lucky that I can do the things that others with MS cannot. And I pray every day for a cure or a better medicine for MS. When I have days that I cannot walk very well I sometimes just say I hurt my leg! It’s easier that explaining about my disease.

  • Susie

    Shantel, I like how you put things.
    Especially the part about the “fantasy” of cleaning the apartment AND baking muffins. Sometimes when I wake up, I have the same feeling that “today, I’m going to ___ and ___ and_____!!!” (fill in the blanks with all sorts of big plans). And then as the morning goes on, and I use up much of my energy just getting through my morning routine, I come back to reality and scale things back. I don’t come back down hard anymore (well, most of the time). I’m trying to come to a healthy and peaceful acceptance of what my body can and can no longer do. It’s a work in progress. It still makes me sad. But for those few hours that I am planning big things, and feeling like my old self, it feels so good.

    So, here’s hoping that we all have those days when we can “forget” every now and then. 🙂

  • Colleen

    It was so nice to read this today because that is how I feel too. I have Fibro, CFS, peripheral neuropathy, and Microvascular Disease. I went to the doctor yesterday and then lunch with friends, came home and fixed dinner. Felt pretty good all day. Crash this morning (I also had 2 doctor visits the day before). I know I will crash but sometimes I am still surprised. and I wish my husband would truly understand. He wants to go do something today. I told him I have been out the last 3 days in a row, and cooking dinner, etc. Today, just can’t. It’s always good to know others feel this way. But it is so much fun to enjoy the good days!!! Hope everyone has many more 🙂

  • Amy

    Yeah, I did that earlier this week. Paid for 5 days. Still recovering & have to stretch spoons today, too. In fact, I keep doing it. I guess I feel like, sometimes, it’s worth the recovery period to have a day when you just act like you’re not sick. Well, until nothing stops the tsunamis of pain & fatigue & you can’t sleep b/c it hurts too freakin’ bad! 😉

  • Mika from Finland

    I have severe Rheumatoid Arthritis and it is getting worse now after the summer, as it does every year. I have these moments too and I am starting to enjoy them. At first it was somekind of a shock when the moments started. When I was diagnosed, I fantasized having a whole week without pains etc. now I fantasize of a whole day instead. Sometimes my moments last for up to 4-6 hours.
    I am tryin’ to translate the spoon theory to Finnish so my friends could get the hang of it.

    Love and strength to ya’ll

  • Shantel

    I have fibromyalgia & I live in Oregon.

    The weather is changing here. The rain has come and the warm breeze of summer has become the cold wind of fall.

    I love the flying leaves of varying colors. I love that there is this one type of bush that turns this AMAZING brilliant red before it becomes dormant for the winter. I dye my hair that bright red every year 🙂

    I have been in full flare up for about two weeks, but today. Today, today, I feel normal. Okay, as normal as I can feel.

    Today, I have this fantasy of cleaning my apartment and making banana nut muffins. The batter has been waiting in the fridge until I felt okay enough to try to bake them.

    It was about a week ago, I had another one of these days where I know I could go for about two hours before my body says, “ha ha just kidding, that’s all you get.”
    I take pills at that point and I keep right on pushing until when I finally sit down every inch of my body screams and I know I will pay for tomorrow.

    I hide the pain from others, they wouldn’t get it anyway.

    Some days, on the bad days, I think about all that I have to do to just be up with the rest of them.

    I have one friend that when she asks me how I am and I tell her I’m good, she can tell. She tells me not to lie, that she can tell. My husband can’t even tell.

    So today, I will take my pills and I will enjoy these few hours of feeling normal 🙂

    And damn it, I’m making those muffins!!

  • Vanessa

    I have moments like that!! I feel so accomplished at the end of the day, and even tho I pay for it a few days after, I look forward to the next time I “forget” too.

  • Maria Hawker

    I have Fibromyalgia & was able to sympathize with much of what you said. It’s so hard to watch others enjoying life, doing things we really can’t do anymore. If we do them, we have to limit the extent or pay later. But it IS nice to forget sometimes. I’ve done it, too. Consider it a short vacation from the life of a spoonie! Everyone enjoys their vacations & there is always sadness when they are over. We don’t want to go back. If only we could be on a permanent “vacation” from spoonie life!