Spoonie Life

I am a Spoonie. Some of you are Spoonies too. Some of you are reading this and feeling a sense of togetherness and community. Though our symptoms may vary greatly and our conditions may not be the same, as Spoonies we are part of a huge support group.

For those of you not familiar with the term Spoonie let me offer you an explanation. A spoonie is a person living with one or more chronic illness that identifies with Christine Miserandino’s Spoon Theory. Spoon Theory is a dramatization/illustration of what life with a chronic condition is like using spoons. It’s worth reading through if you happen to have loved ones that live with chronic conditions such as Lupus, APS, Rheumatoid Arthritis, Asthma.

I have two conditions that make me a Spoonie. Lupus and Antiphospholipid Syndrome. They both cause their own set of problems and at times it’s really hard to tell which is the bigger pain in the rear. The scariest of the two is definitely APS. It is an autoimmune blood clotting disorder. Due to it I had a miscarriage May 2013 and then a series of TIAs over several weeks later that year. Autumn of 2013 I also suffered from a blood clot in my right eye and now have a blind spot because of it. Other complications from APS include chronic migraines, brain fog, and other neurological issues. Lupus also causes me chronic joint pain, rashes, chronic fatigue, flu-like symptoms, random fevers, and a plethora of other symptoms that have been difficult to learn to live with. Even the medications (this should read small pharmacy that I have acquired) have crazy side effects and have been an adjustment.

Life as a Spoonie means starting the day knowing I have to make decisions based on not what I need or want to get done, but more so based on these ruling forces in my life that change from day-to-day. My energy levels and physical abilities (number of Spoons) varies greatly from day-to-day. As a person that has never been one to set quietly on the sidelines, this has been a very frustrating realization and acceptance process. There are still moments on a day where I start the day with fewer spoons than I need to accomplish what I need that I get discouraged and feel hopeless. I constantly have to remind myself to take time out and reserve my  spoons. Running out of spoons puts me at risk for a full-blown flare of my conditions and then instead of having a day where I do low-key activities and take time off for myself, I may end up being down for the count for over a week.

It’s odd to view every task as something that may be the task that benches you for the rest of the day. That’s how my life is though. I know at any moment, even on days that my energy is plentiful, it could all vanish with no warning. Vanishing spoon syndrome is what I like to call it. So I try to plan my day accordingly and make sure I get the most important things done early. If I can get the important things done first each day, hopefully on the days I run out of energy before the day is complete, I can move my list of uncompleted tasks over to the next day to be completed tomorrow.

Being a spoonie has taught me the value of knowing that not everything has to be done when I think it has to be. That some things can be put off to another day. It has made me reevaluate how I do certain things and it has caused me to implement some changes in my life. I have also over the last year of being a Spoonie found ways to make the processes I deal with easier, and I’ve gotten creative with how to save spoons. That’s what you do though, you learn how to live life within the restraints your conditions place upon you while living life to the fullest. That statement seems contradictory but it’s the reality of it. It’s amazing how many contradictions being a Spoonie has brought into my life.  Here are a few of them. The amount of medicines I take just to feel somewhat close to normal, but I’ll never be healthy again. I’m on medicines that are considered High Risk and that could cause cancer. This came with a verbal warning that went something like this “This may cause Leukemia or Lymphoma but it’s our best bet at making you feel better. Plus the good news is we can cure those! We can’t cure Lupus”.  I see my doctors more than a lot of cancer patients see their doctors, I’ve actually been told this by both an Oncologist (who happens to be my Hematologist) and by a cancer patient who was recovering after a few rounds of Chemotherapy.

Most of all being a Spoonie has left me at this odd point in my life where I find it very hard to relate to a lot of people. I’m just very lucky and grateful to have a close group of loved ones that love me for who I am and that are very supportive and accepting of who I am regardless of the changes that have occurred in my life.

I’m excited to say I am taking part in the SUPER SPOONIES STORY SWAP. It’s a network of other Spoonies sharing their stories about their Chronic Illnesses and what life is like for them. I encourage you to check it out. It is a pretty cool project!

 

 

 

Advertisements

10 thoughts on “Spoonie Life

    1. You are welcome. I’ve used it several times to start convos with my loved ones over what it’s like living with my illnesses and not being able to freely make choice about life the way I use to. It’s helped open up the lines of communication a lot. 🙂

      Liked by 1 person

    1. Thank you for allowing me to be part of this awesome project! I’ve enjoyed reading through the submissions from others that have submitted so far and can’t wait to read more. You are doing a great job at putting everything together!

      Like

  1. I found you while researching “spoonies” I too have lupus antiphosolipid syndrome. I was diagnosed in Nov. 2 years ago and quit my job the following April. I had a very demanding job and was frustrated all the time because I couldn’t quickly figure things out or understand a new process being implemented and felt it was the demands of the job. I developed Raynaud’s and that started bothering me using my hands ( working 8-12 hr days) I still tried to be at top of my game and then my hands started hurting on the pad part that rests while typing or writing , they become red and hurt for hours after sitting on surface. My PC tried pain med but I can’t tolerate it &/or it wouldn’t have any effect. My rheumotogist never acts like he believes ( or maybe unconcern) hand doctor gave me an injection and wrist braces, which had a gel pad that rested on that part of my hand and irritated it too, I finally made decision I know how I feel and quitting work is what will help in the biggest way. I had a well paying job and am 50 yrs old, too young to draw SS. Money is a little tight at times, can’t do as much as we’d like, but less pain, time for a 25 min. nap all well worth it. I always tried to be superwoman and it’s huge learning curve to try to not stress when things aren’t done. I also have heart disease as result of lupus and will need valve replacement surgery in < 3 years. I don't look sick, I feel people think I'm lazy or faking (admittedly I'm paranoid about this) because I don't work anymore . The bottoms of my feet hurt when I walk very much, – brain fog is intense! I can't carry on conversation and remember anything to talk about or complete my train of thought if interrupted, it's very embarrassing. I have horrible upper back pain and am at chiropractor 1-2/ wk. I too spend a lot of time at dr appts and getting lab work done. I have PC, oncologist, eye dr ( taking plaqunil , has to be monitored), rheumatologist, nephrologist, chiropractor. Along with normal dentist, gyn, mammogram appointments. I get crazy if too much is going on and forgetful, and that really sends me into a tailspin. It's good to hear that even though I'm not "normal" I'm not crazy, there are others experiencing similar issues with this disease, life and living with people that don't understand the unseen illnesses. Thanks for sharing. !

    Like

    1. Becky,
      Thank you for sharing your story with me. It can be overwhelming to say the least. I know in the beginning it seemed like I was shuffling between my different doctors several times a month. Slowly as the year has passed that has slowed down. I see my Hematologist and Ophthalmologist once a year (or more if needed), Dermatologist as needed, my Rheumatologist every 2-3 months, and I see my PCP every 2 weeks for my INR checks. Plus I sit down with my PCP to every 2-3 months for a more indepth appointment to go over meds, what is going on with my Rheumatology appointments, and to make sure everyone is on the same page. Just getting answers as to what was going on, and being able to name the craziness calmed things down a good bit. I suffer from Raynaud’s as well, UGGG it’s that time of year again when it’s going to act up again. SIGHS!!!!! I’m on Plaquenil and Imuran as my main treatments, as well as my anticoagulant. Plus my small pharmacy of other meds. Hang in there and keep looking forward! If you ever need someone to talk to feel free to send me a message through my contact me page, or you can connect with me on facebook! 🙂

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s