No Rhyme or Reason. I have done all I can do.

 

What to do when you have done everything, and still feel like crap.

There are days when I feel really crappy. Maybe I didn’t take my meds on time or I overdid the day before. What I really hate is when I seem to have done everything right and I still feel so wrong. The other day the weather was beautiful, I rested, even got a massage, took my meds, hydrated and ate well and yet I felt like a Mack truck had hit me during the night and left me half comatose in my bed. Every joint in my body hurts, compounded by a massive migraine that caused a nauseous feeling.

I hate these days even more than the days when I can seem to pinpoint just why my body is rebelling and screaming out in pain. I want to have a logical reason for my flares and I am looking for logic where there is sometimes none.

Lupus is an unwelcome visitor that pops into visit without any courtesy phone call and I have to come to terms with that. I certainly did not send lupus an invitation into my life! We all have those people in our lives that pop in or call and we have learned to put on a smile, be gracious and make the most of the intrusion. Lupus is no different. We have to learn to roll with the unpredictable punches. There will be days when we seem to be on top of our game, making our health a priority and yet we find ourselves in the middle of a flare.

Then added to that frustration, the well-meaning friends and family who rattle down the list with you. “Did you eat?” “Did you take your meds?” “Did you get enough sleep?” Yes, Yes, Yes and I still feel like dirt!!! Well answering from the position of dirt, I guess everything is looking up.

breathingWhat to do? This is when stress relief, positive thinking, prayer, a support system or all of the above is needed even a massage can bring some relief. When you feel like crap and you have done all you can do, you need to breathe and accept life for what it is- there is often no rhyme or reason. You have done nothing wrong. It is what it is and it is not your fault. Reach out to someone if you need to talk and vent. Go to bed and chalk the day up as lost if you need to. It happens. Get quiet and talk to your higher power and ask for patience and grace to move forward. Do the meditation, listen to soft music or do gentle stretches to relax your body. The trick is to just keep breathing.

Don’t saddle yourself with guilt or added frustration trying to figure out why this flare-up is here. Trust me there is not always an answer even though we just want one. We want to think there is always a cause and effect and if we keep figuring out the causes we can stop the effects.  Stop over thinking just get through it. There is not always a rhyme or reason.

 

 

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

 

©2019butyoudontlooksick.com
  • Sylv Taylor

    This is late, but… the reason it’s a disability is, in part, because it doesn’t let up even if you do everything right. Some days, maybe most days, it’s out of your control.

    That’s why all that well-meaning advice is pointless. ‘Yes, I did all of those things and I’m still disabled, that’s why it’s a disability,” is my go-to answer now.

  • Lucy

    I shared your spoons theory with my niece who has MS. I am amazed that you could put this into words so beautifully and eloquently.

  • Bethany

    There is no reason. It is so easy to blame myself when I don’t feel well—I ate something I shouldn’t have, didn’t sleep enough, walked too much, taught with too much energy. But the truth is there are things I can control (diet, meds, rest) and things I can’t (weather, energy)… I cannot control my own body and that frustrates me most-when I shake, tremble, when I cannot get out of bed, when I cannot stand up or see straight. My disease has been a lesson in releasing control and remaining in control when I can. It has taught me to make choices… And it keeps teaching. It keeps coming—it keeps coming for seemingly no reason. I am so glad tonight to know I am not alone.

  • KayleeSlate

    I just found your website. This helps me so much I can’t even put it into words. I’m going to use the spoon theory to explain it to my boyfriend. My step mum has fibro too my biological mum does, and my grandmum has MS. They are the only people who understand my days. I have run out of spoons today and it is only noon. Anyone willing to lend me a spoon? Lol. I am getting told every day “you don’t look sick” yes, until my Cyclic Vomiting Syndrome flares, then I look sick. I always try and find a reason. And you helped me to understand that sometimes, there is no reason. Thank you my sisters and brothers in pain. Gentle hugs to all.

  • Karen Moyer Richards

    OH, THANK YOU FOR THIS! You described my frustrations to a T!

  • Cheryl

    Awesome article, Christine. You’ve said what I have been feeling for so long. The longer I have Lupus, the more aggravating it is to answer people’s questions, or to read certain posts on boards that are condescending. Everyone has a cure, right? Thank you so much for keeping it real. I hope that you feel better soon. A break in a flare is a God send.

  • summer

    Hi I just recently ended up in hospital I woke up with right leg weakness seeing double and rapid heart beat they tonight I had a stroke I have fibromyalgia and rheumatoid arthritis they sent me home 4 days later didn’t find any thing wrong except my thyroid meds for low thyroid caused my thyroid to go into hyperthyroid who were prescribed by a ent doctor he also told me I had adrenal fatigue they took me off thyroid med and put me on heart med don’t know if just another fibromyalgia symptom

  • Linda Austin

    I know the feeling all too well also. Very frustrating. ‘are you ok?’ ‘how are you feeling?’ ‘have you tried….?’ ‘have a lie down, you’ll feel better’

  • Kathryn Chastain Treat

    I had an awful reaction a few days ago. Everyone kept asking what caused it? Was it something I ate, something I came into contact with, something in the air? I had no clue! It is so frustrating when you think you have done everything right and still the reaction happens.

  • Ginger

    Oh! This was timely for me to read today! I have had dr.appts. , a root canal on Tues., cleaning out my office, cleaning carpet spots and steam cleaning my vinyl kitchen floor. All of this in the last few weeks while dealing with on again, off again neck spasms. SO..it was overcast and very high humidity this morning (raining now) so I came back to bed. Of course I went through the litany of guilt. Why I didn’t just push through..then I remembered. I am doing the best I can when I can. This is not a choice to feel like a wrung out dish rag. So I am still in bed checking emails and listening to the rain. My little dog in and out checking on me and taking an occasional nap herself. It is what it is!

  • Kris

    When I have these days, I sit myself down and have a good cry if necessary. Frustration can be blocking. Sometimes the tears are cathartic. Then, I pray for strength, and find something positive to do. Sometimes it’s just watching a good movie–sometimes it’s making a card for someone else who is suffering. You’re right. It is what it is. Fretting over it just makes it worse. Thanks for the reminders!

  • Ohnwentsya

    I recently ditched the last of the sugar (it was hidden in my protein bar emergency food:-/) and it’s helping but no miracles. Luckily it’s easy to replace with fruit or agave if I feel deprived.
    It’s odd how sometimes a diet or other change will make a big noticeable difference and other times the same change (I’ve given up dairy off and on since the 80’s) won’t have a great effect.
    I really appreciate this post and comments because I’m right there this week too. Seemed to be doing everything right but kersplat!

    Sometimes I think things we can’t control like pollution, weather conditions etc sneak in between all our positive efforts.

  • Robin Hinton

    Thanks for posting this, I can so understand where you are coming form. Take care, give yourself gentle hugs.

  • Tami Brotosky

    I have those days. In fact this past week has been like that. I know it is just a flare up. However there are moments when I just want to scream. “Why me!!”
    Then I tell myself that it is ok to be kind to myself and just take it easy. That helps some get through the flare. I know if I fight it, it will only be worse.
    They say what doesn’t kill you makes you stronger. I think it helps you know how to better budget your spoons when there are less available. 🙂

    Gentle hugs to all. Tami

  • Tania S

    My UCTD may be coming out of remission – it was in remission for several years. Funny thing – I am healthier than I have ever been: my heart rate is returning to normal (used to have a 100+ resting rate), my migraines have been gone for months now and the fibromyalgia is gone. [got rid of most of it by avoiding GMO food and drinking reverse osmosis water]. Even got rid of a genetic eye condition by supplementing with magnesium. But for some reason, the swelling is coming back in my feet and they hurt. I was on over a dozen prescription meds and have been off all of them for over 7 months. Controlled even the allergies by using essential oils. But the only thing that helps the UCTD is a friend’s prayer – it took out the fatigue. I keep thinking maybe if get rid of the sugar from my diet, but sugar and dairy are the only “vices” I’ve got right now and I’m keeping them.
    I guess there is no rhyme or reason for this. But that is hard for me to accept. There must be something I can change…

  • AnnaV

    Thank you for posting this. I really needed it today. I am having an awful day for no particular reason and that is almost as frustrating as the way I feel. It is good to know I am not alone.

  • disqus_4MlL59kMBE

    I feel like chronic pain keeps me mentally and physically exhausted. Tired of explaining, tired of complaining and really tired of Doctors that say “Don’t dwell on it, it makes the pain worse!” Just wish I could go to a deserted Island and be by my self most days. Depression sucks and the loss of friends who don’t want to be around someone who can not even walk to the mailbox. I have SLE and Fibro. I have a constant low grade fever and I am in a flare right now, so I am throwing a pity party if anyone wants to join me.

  • Christine ‘Janicke’ Davis

    I don’t have lupus but fibro and I hate the days that come with out warning and just take all you have away. I sorry for what you have to go thru but I understand those days all to well. It can be a beautiful day and the temp. is good and I feel so bad and I wonder “why today of all days”. I’m very very tired today and just all out of whack and in a lot of pain. My brain has some how taken another vacation with my thoughts and energy and when I can’t think clearly because of fibro. fog, I just get depressed more and really try not to. I’m in Texas and the heat is to much for me, so being out side is a no go for me until fall….I’m sending positive thoughts and prayers your way.
    Christine Davis : )

  • Julie Jo Koehler

    Funny you mention this Christine. Yesterday I posted this article:
    Lupus Research: New lupus study concludes that SLE is a condition associated
    with high unmet need and considerable burden to patients. (http://ow.ly/3ntcUf)

    This review highlights the need for disease-specific and
    patient-reported measures of disease signs and symptoms. The study
    provides useful insight for SLE clinical trial design.

    WHY is this important? This is an important article IMO because it is saying what many of us have said all along- “Is this as good at it gets?!” “Why are our symptoms so severe?” and “When will it get better?”

    What the clinical trial medical community has finally seemed to realize is that Lupus is not a symptom controlled disease at all – even with medications. When they have clinical trials with placebo groups it causes a differential bias-and so they now need to tailor the trials to take that into consideration. It might seem like a sad pill to swallow but it’s also good news I think-better trials make better medications.

    Julie Koehler
    btw-TY for all you do for the lupus community! 😀

  • Anisha

    You said it!!!