Disabled mom: to help others understand

Sherry - posted on 06/08/2010 ( 3 moms have responded )

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I've been reading posts about mom's who are annoyed with hubbies, annoyed with inability to work, angry because the boss doesn't get it, or that hubbies parked his @rse on the couch after work to do nothing... Been there done that... know the feeling! But for most of us stay at home mom's fighting disabilities within oneself isn't a way of life. For some of us though it is...

Now a mom of any genre would read this next questions and understand... a disabled mom will read them and think FINALLY.. what do you think? Do you ever get frustred with those normal people who think your trying to spit out a load of garbage about being unable to work? that your always hurting? That it's a chore and a half to get out of bed in the morning? Or that very simple tasks can simply drain the little energy reserve you have leaving you next to exhausted? now add a little one on top of that (or two... or three... or six)

Yeah! Me too. I'm forever telling myself my family doesn't "get it" and I get tired of trying to explalin to people who don't have the physical challenges ... or get really mad at those who judge another especially with that whole " you don't do anything all day" that most stay at home mom's have to deal with from someone or another. It can be a challenge when you've got a baby that seems perminantly attached to your hip. but add a disability or illness to the party too... and it's that much more difficult (and our "SPOONS" are depleted faster....) Read the following article and maybe we'll all learn not to take so many things for granted. Wether its the time we spend with friends, the "me" time as moms, the family times that are a bit strained.... Not everyone will get it.. but someone might just appreciate it.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

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Vicky - posted on 12/11/2013

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That is the best way I have ever heard a disability or illness explained. I have had Rheumatoid Arthritis for 7 years and Fibromyalgia for 3. I'm a stay at home Mum of an 8 year old and have 2 grown sons. I am constantly asked why I am not working, why I don't socialize more, why I am not on the PTA or in any clubs. Now I can tell people, its because I simply don't have enough spoons!
It's taken me a long time to except my limitations and learn to live within those limitations. I cant say I like it, I cant say I don't get frustrated but its my life and its what I have to do. And its hard, no one that doesn't suffer a chronic illness understands, even when they say they do. It makes it hard to make friends, I go to the school to pick of my daughter and the other mothers try and avoid looking at the walking stick or seeing the limp. They don't want to know about this person who is different. Its a lonely life we lead us stay at home disabled Mothers.

Sherry - posted on 06/08/2010

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hi Endia, wow.. nice name... not sure how you pronounce that though....

Thank you for your kind words. I also suffer from Sleep apnia (or so they tell me) but because of a psychological freak out session every time a mask is on my face or even an oxegin aparatus (I was forst onto a resparator when I was really young) it's just not in the cards for me.. we're looking into surgical correction -- trimming the plallet and taking tonsils out... though I'm going to wait until my son is a little older I think.. I can live with it a little longer. I also have severe problems with my legs. Dermatomiosytis (juvanile version that burnt itself out when I was about 12-- but still suffer the rammifications) is a skin and muscle disease in the auto-immun catagory it causes some skin discoloration and massive muscle degeneration.. though it's burnt itself out only 1/2 of my muscle mass actually works.. I also have leg perthise disease and nevascular nacrosis (one deals with cartaledge degeneration the other is a bone degenerative disease) both of which are no longer active but again I'm still dealing with the ramifications of these with a replaced hip and a possibility of having the other done too sometime in the future...

Chronic pain, as opposed to the chronic fatigue which I suspect you also suffer from.. can drain what little energy and strength I have especially when this aweful Alberta, Canada weather desides to shift from negatives to plus in temperatures then switch back again.. spring and fall are brutal... winter and summer not quite so bad (unless there's a storm coming and the barametric pressures switch)

I wanted to thank you for your kind words. Though I'm not a religous woman.. and at one point would go so far as to say I didn't believe... I'm at the point now that I'm reserving judgement LOL I'll keep you in my thoughts and hope that everything gets easier for you... Day by day is the best way to go but it's hard most days. My mother is forever telling me to relax and take it easy... she doesn't understand that to park my butt somewhere is the absolute WORST thing I can do... while I can move about i'm going to move about and do what needs to be done.. I'll be confined to a wheelchair in the future so in my mind I'll rest when I'm dead.. not before.. got things to do, people to see, places to go.. and if I hurt.. well I'll take my tylonal with codine and trudge a little slower ;) I know where your coming from.. and I do hope you might be able to explain to others just what your feeling a little easier after reading the article.. I couldn't keep it all to myself.. I hope it helps you in some way... I know it sure boosted my spirits when I read it.

Endia - posted on 06/08/2010

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I just wanted to say "GOD BLESS YOU"...YOUR TRULY BLESSED"! What a creative yet powerful story you've shared.I can relate because im a permanantly disabled young stay @ home mother of 1,that holds alot on my little plate so to say.Im diagnosed with narcolepsy (severe sleeping disorder-lack of daytime alertness due to being so sleepy) im also diagnosed with severe sleep apnea (a disorder that when i sleep my lungs collapse,close ,stop breathing for periods of time,i'm required to use a breathing machine called a bipap to help keep my lungs open when im asleep,if i slip and dont use it you can imagine i feel like crap the next day..:) I can relate Like you said when people dont understand when your not feeling well ,or how your body feels on a day to day basis..my mom of all people seems to forget that sometimes..and it hurts because she's my mother if anybody i would want her to understand.I struggle everyday with lil things that before i got sick i can master so quickly and easier.I just take one day at a time and continue to trust god that he will give me the strength & confidence & courage and faith i need to actually live and to face people(to not allow me to live in fear and to accept my life as it is) inspite of my health condition.I encourage you to pray and seek god for strength each day..im a living witness..I know without a doubt..IAM NOTHING WITHOUT HIM(GOD)..stay encouraged christine ill keep you faithfully in my prayers...:)-endia

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