Life and Everyday

GIT ON THE STRUGGLE BUS…NOW!!!

I will be the first to admit that currently I am driving the struggle bus. There is plenty of room aboard if you wish to ride. There are rules.

1. I am in charge.
2. Sit down and shut up.
3. The radio will play at all times – I am in charge of the station!
4. I will sing loudly, and at times in a British accent if I am feeling cheeky.
5. My parking skills are questionable, at best, but you are not permitted to complain.
6. I reserve the right to complain about the driving skills of others, but you may not judge mine (it is my bus, if you don’t like it….get off!)
7. Cursing on my bus does not count (trust me, God and I have it worked out).

That being said, we are moving on. Some people classify themselves as glass half full or glass half empty kind of people, not me. I consider myself more of a, I am just really glad we had something to pour into the glass, kind of girl. I can hear some of you groaning, right now about being all negative. Well, shut up! This is my blog, and I am a realist. I call it like I see it. Life is hard folks, wear a helmet! I mean really, when was the last time poop came out smelling like roses?

There comes a point where you want to go shopping at 2am because if one more person asks you how you are doing with that pathetic look on their face and their head turned to the side, you just might vomit on their shoes! Yes, the kid is still ADHD. Yes, she is still dancing and playing minecraft as well. Yes, she throws a major fit now and then and tables get overturned and flood goes flying but she still is 12. No, I  still don’t have a job.  No, I don’t care to discuss that today thank you. I know I look tired, and I am well aware that is code for my dark circles I have dark circles and you are worried that I am going to go off the deep end. I am absolutely positive the little white lie was invented for me, “I’m fine, thank you.”

While I speak of driving the struggle bus, the one thing I don’t want is people feeling sorry for me. That is the last thing I want. I have people say to me over and over that they don’t know how I do it. How do I deal with my daughter’s illnesses and my own, keep up the house, get to the appointments, keep looking for work, find time to write letters and keep up with friends and family.   I started walking again, to release some of that stress that I have. If I am having a horrible day, I simply walk until I my hip and leg can’t take it anymore. And the pain it brings is a welcome one. My other answer; one moment at a time. In the morning I put my feet on the floor, I take a deep breath, I get up out of bed, and I put one foot in front of each other. Some days the only thing I can find to be thankful for is another day vertical, and that has to be enough. The thing is, I know it is. Face up, deep breath, tomorrow will be a better day!  It’s gotta be, right?

Then there is Jack.  Little Jack goes with me.  His little legs keep up with me when I walk.  He’s a trooper.

jack

 

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Life and Everyday

19 19 19 19 day 19

Day 19…..Thank for the doctor and nurses at Urgent Care today.  19They took very good are of K-bug this morning and got her fluids in her and zofran and helped her to feel a little more perky.  Tonight she is feeling more herself.  She still won’t be going to school tomorrow but at least she won’t be feeling as “punk” as she has been.  Hopefully the fevers will stay down now.  I thank the good Lord for the doctor and nurses that kept her in check and knew what she needed right now.  I think she is turning the corner tonight. *big smiles*

Life and Everyday

Invisible Illnesses

I have Lupus and Fibromylgia and a few others that are hard to explain but they are all dubbed “invisible diseases”.

I had heard of the Spoon Theory in describing what it is like to have these invisible illnesses but didn’t totally understand.  So I googled it and found what I was looking for.  Thought I would share it with you all.

The Spoon Theory

by Christine Miserandino http://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.

Cartoon image of Christine Miserandino holding a spoon
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

Life and Everyday

Support or no?

A question to any reader with a chronic illness…..  Question-mark

How do you feel about online or in person support groups?  Or even on FB, writing about your illness?

I see their purpose…giving people a place to discuss and support each other. After all, unless you are dealing with the illness, you can empathize. But a person does not truly know the ups and downs of the battle.

The problem that I see is that so many seem to be flooded with people who just want to have a pity party. Now, I am not saying that people can’t talk about what they are going through and have a little whine now and again. I do that here sometimes too. But, it just seems like some folks in this one group I have seen or on Facebook,  just don’t want to move forward. They let the illness define who they are.

Case in point. There is a group on Facebook that I have been following which posed a question about whether it is possible to live pain free with fibromylgia and or lupus or arthritis. Some stated that they were living a minimal to pain free life. Others seem to dismiss it as a pipe dream. I sensed that some seem to “hate” on the ones who were enjoying an extensive period of remission. Or, they just give up and give into the pain.

Why?  Why the pessimism?  Is it that we want what someone else has? Does it make some people feel better to make other’s feel bad about their remission? (I am curious to know from a few of my breast cancer survivor friends if this was true in their circle.)

I’ve had my ups and downs with this illness for the past 10 years (I was diagnosed in 2003).  I’ve been in and out of remission so many times, I often wonder when the roller coaster will end. I’ve bitched about the injections I have to get on a weekly basis so that I can function at at pain level of zero to 1 out of 10. I will not give up the fight.  I am going through another bout of a huge flare right now.  I see the rheumy in a week.  I don’t know what my next few weeks will hold or how many injections or times I will sit at the cancer/hematology center hooked up to some “stuff”.  But I am not giving up.

And, I certainly will not scorn a person’s ability to enjoy pain free living. That’s what we all want, right?

Life and Everyday

Monday in the woods….

 

I love being with my daughter….but living out here in the sticks at my mom’s for these past couple weeks…..OMG!!  Internet is so scarce….even tho I have hotspot on my phone, etc.  It just doesn’t hold out for very long.  I get a few moments here and there on the net and that is it.  Even went to Mc D’s today to update from my Kindle….the internet there sucked.  LOL  I am just having no luck lately.  (didn’t even win the millions in lotto! LOL)

I took K to the Urgent care clinic yesterday.  She has strep and tonsillitis.  Poor girl.  Her tonsils are like golf balls in her throat.  We talked about getting them out in the very near future.  I will have to find an ENT doc to get her in and looked at.  So antibiotics are working now.  She felt pretty good most of the day.  Kept her home from school like the doc said.

I did take her to her counselor today too.  E said that she is calming down in the past few weeks.  I think with K being with me has made a huge impact on her behavior.  E said that she has come a long way from being the angry 7 year old that was when she started seeing her.  I am glad K is doing better.  Talked to her counselor about me getting custody back too.  My mom has to initiate the court stuff…which I know.  We are both hoping that K can come home this summer and start school with me.  I just want my mom to be able to relax some and do her own thing.  Having both J and K here is hard for her somedays.  I love my mom to death….just wish I could do more to help her.

Not much happening otherwise.  I have read through 2 books and half way thru a 3rd now.  Playing lots of solitaire too.  So, I guess not a whole waste of time.  LOL