The “spoonie” Small Print

 

Batteries not included. Shipping and handling extra. Minimum purchase required. Small print is everywhere and on just about everything. I come with a Spoonie version of small print: if I feel up to it. Whenever I make plans, I always have to add “if I feel up to it.”

I never know how I will feel from day to day; what illness will be flaring or what body part will be hurting. If I don’t add it, my friends or family will add it. It’s been going on for so long that it’s become an unspoken disclaimer. It’s understood by all involved that I might have to cancel any and all plans, or adapt them, because of what my body is doing that particular day.

Sometimes the small print feels like a ball and chain around my ankle—I can’t go anywhere without my supply of medications, pain relievers, and anything else I would need to nurse my body. I walk slowly to accommodate my body. Other times it is merely a piece of toilet paper stuck to my shoe—a minor annoyance that I just can’t seem to get rid of.

The ball and chain feeling sometimes makes me cautious about making plans at all. Why get excited about something that I might have to cancel? With the toilet paper stuck to my shoe, I am more optimistic as I go about my activities even thought I may still have a bottle of meds on hand. I need to be cautious, however: overexertion can rapidly lead to spoon loss. I may not like my small Spoonie print, but it is there. That’s how I come. There are no refunds or exchanges, and restrictions usually apply. I must abide by the small print. But wait, there’s more! Once I respect the small print and understand it, I can learn to live with it and make my life as satisfactory as possible. Guaranteed.

 

Article written by staff writer, Sonja K. Peterson Sonja is a cat mom with endometriosis and fibromyalgia. She also had a hysterectomy for adenomyosis. She blogs about her experiences at The Mud and the Lotus www.mudandlotus.com. Follow her on Twitter @sonjathegreat.

©2019butyoudontlooksick.com
  • Wow this is like ( the big picture ) our lives. My husband and I both suffer from the chronic pain and suffering and all the medications that come from CRPS aka RSD. So I guess we are spoonie a too! Great site. I will join on twitter the #spoonie Thank You very much for letting me find this site from a friend. God Bless everyone who reads this and may we have a less pain, anxious and stress. Hugs to all.
    Thanks
    Vanessa Knusta

  • Lisa

    I m really struggling with all of the ways I am disappointing my children due to my nausea, pain, and lack of energy, etc. It’s difficult to keep canceling on them. Worse, sometimes we arrive and then I have to sit down immediately or we have to turn around and leave.
    It also has become an issue at work. Yesterday, I had a meeting with a supervisor about a report that she needs on Tuesday. She wanted to make sure that I can meet the deadline because she feels I have missed too many deadlines lately due to being sick. The meeting took 20 minutes and then I was too exhausted to finish my work for the rest of the day, let alone start on the new report.

  • ASC

    This is why I no longer have friends.

    They never know when I’ll have to cancel plans. They can’t count on me for anything. They figure I’m too sick to do anything. And they hate coming over to my house. And yes, they’ve told me this to my face.

    Get new friends? Sure, you tell me how.

  • This article brought tears to my eyes. I live with this same reality, but it feels different reading from someone else’s perspective. Maybe because it feels like someone really gets my reality. I have a bad habit of making a plan because I REALLY want to do something. Then the day comes and I don’t want to let someone down, including myself. There isn’t much pleasure in a life when you feel like crap every single day. One day differing from the other only by how bad is it today? Bad as usual, extra exhausted like I’ll go but it really won’t be any fun, or SO BAD I wish I never planned anything because I can’t count on being able to keep a promise I made. I know when I was younger and feeling well or not wasn’t even on my radar. Adding “If I feel up to it” to all my future planning is going to be helpful from this point forward. I also won’t worry for weeks or months in the back of my mind, I can’t let them down! -Thank you.

  • I am ready for the deal with small prints taken in, life is different to us, it is your courage and wit that has made the rain to sunshine,your words show that; best of luck for every plan , yes with the small prints working on….no issues if some plans do not work rest will work and someday chains and balls will be feathers.

  • Carol

    This happened to me this week. On Monday I went to the Paralympics and when I was there borrowed a scooter so moving was easy. I wasn’t really that tired when I got home. On Tuesday I was going back to London to meet up with a friend, stay overnight at her house and then she would drive me to the station to go back to the Paras to see wheelchair fencing, which I really wanted to see.
    I got to London (Kings Cross train station/underground) when I felt so ill. I thought I was going to pass out and then had to run to the bathroom in the next building. I sat for about an hour trying to decide whether or not I could travel another 40 minutes by tube to my friend’s and then act normal.
    Couldn’t do it. I came home and laid down. I checked my blood pressure which was normal (I had a bp and heart scare last month but I’m fine). It turns out it’s a tummy bug. I was so disappointed that my body let me down and my friend.
    I don’t mind the money that was wasted just the fact that I let my friend down. It sucks.

  • Julie

    Thank you for the spoonie post. I have degenerative disc disease, MS and fine print that comes along with it. I am always fatigue or in pain. I have enough meds to open a pharmacy and more doctor appt. than I care to remember. But I am here, maybe just existing, but there has to be something out there for me to contribute. My family and husband are supportive I am so glad I found all of you. Bless you…..each and everyone.

  • Jemsuzbe

    my biggest pet peeve is being let down and therefore letting others down. i really hate having to do it when i’m ill. most people are quite nice about it at first but people get annoyed with being let down all the time and i cant blame them for that. i guess ive just got to keep trying….

  • Aletheiaever

    Thank you for posting this. It is exactly how I feel. I haven’t quite come to be at peace with it yet, but I’m working on it. I have Primary Immunodeficiency Disease and degenerative/bulging discs in my back, plus migraines and mild endometriosis. People just don’t understand why I can’t just “grin and bear it” to them it’s just a headache or a backache, and they definitely don’t understand why I’m sick so much, wash my hands so much, and take such precautions around other people who are sick. I have a handful of good friends who are my support. I am so grateful for them – and for websites like this one, where there are others going through the same things.

  • Napaglassgirl

    I can’t count the number of things I have had to cancel… the biggest regrets were not being able to be a bridesmaid in 2 of my best friends weddings.  I knew that commitment should not be broken, so even though we had been friends most of our lives, when asked to be in the wedding parties I had to say I would not be able to bear backing out on that honor/responsibility.  I hoped to go to both the weddings, but only made it to maybe 10 minutes of one. 
    I also had to cancel a trip to Australia with my mom that my brother was treating us to.  Last week, I missed seeing Craig Ferguson perform at a local venue.  I had to drop out of numerous classes, cancel many invitations I had previously RSVP’d yes to…the list goes on and on.  Thank you for writing this, and for The Spoon Theory.  I appreciate your ability to put into words what so many of us are unable to.  I hope those with unlimited spoons (and seemingly copious amounts of every other utensil) are better able to understand our plight through your writings.

  • This is great advice!

  • Rosie

    Shared. My life with three rare diseases has small print.. and large print! 🙂 <3 But I am fighting rare diseases. There IS a reason for it all.

  • Iris Carden

    The extreme? I’m a minister.  Last week, I had my service written, but by Sunday night realised I was in no state to get up early on Sunday – and emailed the service to a congregation member to read out for me!

  • Bluesun1015

    Because of the spoon theory, all I have to say to my family is, “I used up all my spoons today”, and they totally get it 🙂

  • I know that feeling all to well.

  • Margaret – Australia

    Thank you Elaine and other spoonies.  Elaine said very succinctly that “acceptance is crucial” to her healing process.  I have been out of hospital now for two years (total twelve months in hospital and 15 abdo surgeries) and still I cannot accept who I have become.  I’m now at the stage of understanding that the “bulk of the iceberg” of my life, under the water will be going to medical appointments but I need to find a way, given the “small print”, of having even a small “tip to my iceberg of life” which makes gives going to the appointments a purpose.  It struck me when my daughter asked what I am doing – I replied more appointments.  For me acceptance will be when I no longer go to medical appointments in order to stay well enough to go to more appointments but when I have a small, manageable activity which accommodates the “small print” and which gives staying well a larger purpose. 

  • Acceptance of who I am now is crucial to my healing process.

  • I read this post this morning and wanted to write a comment. But I was stunned by the truth of it and the timing, too. I had a crappy day today and couldn’t do two of my favorite weekly things. I have a chronic liver disease for which there is no treatment except transplant. And with it comes a lot of fatigue and digestive symptoms. I’ve had it for 7 years now and the fatigue gets worse every year. And yet I get lots of “But you don’t look sick” statements from people. This blog and the Spoons Theory has helped me cope. A lot. Thanks for all you do. And thanks, Sonja, for your post today. I like all the comments that came before mine, too – they all speak to me.

  • Blondeplex

    ABSOLUTELY! My husband had me get tickets to a concert for May. I was hesitant. “You do understand I won’t know how I’m feeling?” He knows, figures I will rest the day before, that morning, got seats instead of lawn seats so I’ll be out of the sun, etc. I appreciate all that (but we still never know). So I got the insurance just in case. Unfortunately, there isn’t always insurance on plans. Oh well, what’s a spoonie to do? Glad others understand.

  • Dottie Balin

    Sonja, you have hit it on the head. I agree with you and your very true article. I get invitations to go to weddings, showers, etc, and I tell everyone, I can not commit until that very day of the event. When I am able to see, if I can go or can’t go due to my Lupus and MS. Sometimes I just want to make the small print larger so everyone can read it. Thanks for sharing. 🙂

  • Nanakanne

    Very good article. I can totally relate to this. It helps to see that someone else knows exactly how I feel. I’ve been dealing with this for almost 9 years now and  almost every day it seems like there’s a new way to ‘look’ at it and you’ve shown me yet another way. Thank you!

  • Carol

    Exactly. However I have a best friend who is a Jimminy Cricket who says it for me and when I feel that I can do things. I want to go here, oh no she says you won’t be up to it when I think I can go and do it. Or it’s wait for me when I can go with you.
    I got tickets for 2 Paralympic events and I know that she will fret because I am going alone. When she does this I feel my confidence ebbing away which isn’t good.

  • Odunahoo

    Thanks for this cute first paragraph. Truth in my life. Friends continue to invite yearly to go with them to Hawaii (at a huge $), but I’d never be able to keep up with them and doubt they’d be friends afterward. The man usually says, “We’d get you back in shape.” And then he laughs. I want to cry. They just don’t get it; they aren’t even close. 

  • rebecca

    Its funny that the people who are closest to me are often the most impatient. I am blessed that , for now, I can usually get through a work day alright. that makes it more difficult for people to understand that how much is left of me after work varies from day to day.

  • Elspeth Graham

    Amen, Sister!!! I have too many of those days myself. Yet even though I am well acquainted with this fine print myself and know that my body all too often can and does betray me, I still feel guilty when I have to csncel plans. It’s this which is one of the biggest “pains” about living with chronic and sometimes debilitating illnesses.