Thursday, July 8, 2010

I'm EXHAUSTED!!!

When someone asks me how I feel, it really just depends on the time of day. It is hard to describe to someone what you go through on a regular daily basis. I found this story years ago and I like to share it with others when they try to understand just how I am. I do not recall were it came from, but the story involves someone with Lupus, but anyone with a chronic disease can totally identify with this store.

THE SPOONS

My friend asked what it felt like, not physically, to be sick. 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.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. 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. I explained that the difference in being sick andbeing 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 choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions.

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 being incontrol.

I asked her to count her spoons: 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.

She counted out 12 spoons. She laughed and said she wanted more. I said no. I’ve wanted more "spoons" for years and haven’t found a way yet to get more. 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; each one would cost her a spoon.

When she jumped right into getting ready for work I cut her off and took away a spoon. " 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 a spoon, just for washing her hair and shaving herlegs. Reaching high and low that early in the morning could actually cost more than one spoon. 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.

I told her 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".

You do not want to run low on "spoons", because you never know when you truly will need them. 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. She had to choose not to run errands, so that she could eat dinner that night.

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 need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing.

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".

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 orillness.

Sunday, June 6, 2010

8 lbs

Well, forgot to weigh in on Friday morning, so I was not able to until today (Sunday) and I am down 8 lbs. WOOHOO!! So excited and will keep it up. Going to try some tofu today, I really hope I like it, its a good alternative to meat. So we will see.

Hope all has a great week and I will update on Friday with my new weigh in and measurement lose.

Tuesday, June 1, 2010

Stormy Weather

Well today was my Monday at work, pretty slow and relaxing especially for the day after a holiday. Could have really used a nap about 11a, but otherwise today was good. Horrible storm blew through here about 5p, right at rush hour, still raining 2 hours later, but all is well on the home front. Didn't think to go outside and post of pick, so I borrowed some from our local tv station.




Tornado watches, warning and all. I have not heard of any major damage or injuries which is good. My dear husband the good samaritan and friend, went out to help one of his friends whose car died while it was pouring rain. That is just one of the reasons I love him so.

Tonight is time for my every-other-day shot. I am going to try and convince my husband to give me a shot in my arm, because my tummy and legs have bruises all over them from these shots. But he is deathly scared of needles. So, I will probably just do it myself.

Food intake today went really well, no red meat, I kept my saturated and unsaturated fat between 10g. Which is good it needs to be under 25g. Got home and did some stretching and lifting for about 20minutes before my legs just gave out. But I feel good. My weigh in is on Friday so I will post my outcome then. Hope everyone stayed safe.

Monday, May 31, 2010

WTF

Me and my muffin top! :(


So, I know that I have let myself go recently. But WOW!! I just saw some photos taken of me this weekend and my my my! Okay it has got to stop. Even though fatigue is one of my biggest challenges, I know that I can do this. My goal is 30-40 lbs. The chee-itz have got to go!! As I stated before I am trying a new diet made especially for people who have MS. It's the Swank diet. So not so big of a challange...no red meat, and watching the saturated and unsaturated fat the I consume. More exercising, I did try P90X but good gosh that work-out kicked my butt. I am going to stick with Yoga and another work out video that I have, plus the bike. If I can get Jeff to go for walks with me, then I will add this into the mix as well.

I refuse to post my weight (at least for now). My goal is listed above and my motivations are our FLORIDA vacation in August and a Wedding in September where I will be a brides maid. I will keep you posted.


Saturday, May 29, 2010

HEAT Sucks


So, one of my main issues is HEAT. I try not to place myself into a place with no AC especially in the summer time or warmer months. So today I ventured out (which is rare) with my husband and some of his friends to a Star Wars Troop. The building was hot inside and started to get unbearable. When this happens my patience starts to wear thin and I get tired. (think heat stroke).

I usually now when this is coming on, because I literally feel like I am sweating profusely and my eyes start getting heavy and my feet start dragging on the ground. I just try and let my husband know when this happens because the last thing I need is a scene with either me totally freaking out on someone or my collapsing from the heat exhaustion. This weekend is my dear, dear husband birthday, so I am trying to take it as easy as I can, so that he will have a great birthday.

I started a new diet that is specially made with individuals who have MS. Hopefully I can do this. I will keep you all posted.


Sunday, November 15, 2009

Stress and MS

I always laugh when my dear doctor tells me that stress is bad and try to stay stress free. UM, that is just not possible. I still work full time 40 or more hours a week, care for my home, my husband, and my animals as well as an ailing parent. Money is always tight and life sometimes just doesn't go the way it should.

Live stress free. Please, what land is my doctor living in. To help alleviate some of the stress I do crafts, or read, or just hang out with friends, but there is always stress somewhere or being caused by someone.

Sunday, November 8, 2009

New Symptom?

So being my own advocate and just wanting to know what the heck is going on with my body in general. I did a search for this new symptom that I have been having lately. If I am correct in my "diagnosis" it is called myoclonus. Whenever I get tired either from walking, exercises or just generally moving around my legs and arms start twitching. I happen to stubble onto an video about a women who has had MS for over 20 years, the interviewer asked her about her leg, that looked like it was hopping around, she stated that it was myoclonus.
So I decided to do some more research and I'll be darn if that isn't what is happening to me. For me personally it is not painful, but extremely annoying. Have you ever tried to stand on your legs when they are shaking uncontrollably? Oh well, just one more thing to add to my list...sigh.