Where Did I Go?? Journal 3 Entry

I have spent a lot of time thinking over the past couple months. Trying to figure out where things went wrong, when did all of this start, how could I have gone so deep into a hole and nobody see it? Then I realized it didn't matter, what matters most is getting better. It is very frustrating to me that it doesn't change or can get fixed fast enough. At times I feel like I am in such a very deep, lonely, hole that only I can get myself out of. It is very hard having a Multiple sclerosis, a disease that causes so many symptoms that are invisible to others. That alone makes you feel very lonely and frustrated. Comments that are made all the time like "At least it's not Cancer", "You are just being lazy", "I know others with MS and they are just fine", "You never want to do anything". I think I could go on and on with the hurtful comments that we have to deal with daily. MS is a very hard and exhausting disease to fight everyday but our friends and family can make us feel as though we are fighting the world. Friends and Family start to disappear, in some ways it may be a relief but in others it only brings us down further and further into the hole.

As I mentioned earlier, I have spent a lot of time thinking the last few months. I have realized that I have to take responsibility for some of this too. How long can I expect people to wait for me to be able to and want to feel well enough to hang out. It is embarrassing to have them see us when we fall, dropping things, our memory and cognitive thinking impaired, not able to walk far before the pain becomes unbearable, etc.. Eventually people have to go on with their lives. The problem is that includes our spouses, children, parents, and siblings. Once I finally had to own up to my responsibility in this is when I realized how bad things really were and it was up to me to continue down this path or change what I could.

Don't get me wrong... I am still struggling with this, however, I realize that it is ME that determines how my day is going to be. I have put a few things in place over the last few weeks and so far it is helping. There is NO POINT SETTING GOALS THAT ARE IMPOSSIBLE TO REACH OR TO MANY GOALS. THAT IS SETTING MYSELF UP FOR FAILURE.

~ When I wake up.. I try to think of good things. Not worrying about the "what if's". If I catch my mind wandering down the negative path, It is either time to get up and start my day or change my thinking again. While working on my "Good Thoughts/Positive Thoughts" I also do deep slow breaths through my nose. I have found this to be the best and quickest way to lessen stress, slow my brain down, slow the anxiety. I use this breathing technique all day long.

~ I make my bed as early as possible. Who doesn't love getting into a nicely made bed? It only takes a few minutes and Woo Hoo... I accomplished something for the day. I am finding that by having my bed made, it is keeping me from climbing back in bed and curling up under the blankets. Of course, If it is a really bad leg day or spasms and/or pain is unbearable, then I have a nice comfy cozy bed to get into.

~ Exercising/Stretching~ Wow, this is a big one. When you are in pain or having horrible spasms, it is so extremely hard to even think about exercise of any sort. Starting the beginning of January, I added stretching and yoga poses into my day. It is amazing how far I have come in just a little over a month with this. Here's the thing.... I am in pain almost every day without doing anything at all. Stretching and exercising actually gives me a few hours of numb muscles (NO PAIN). I have put on almost 30 pounds since I was dx. Some from the meds I have been on over the years and the IV steroids but also from not doing anything. I know that by losing weight it will help me feel better about myself. I have continued doing the exercises, yoga, and recently added cardio into my daily routines. Yes, I still have pain and spasms each day but I was going to have them anyways...

~ I have put into place a Rule... Do #1 thing for me each day! I don't have the money to go do expensive, fun things daily... For instance exercising is something. Painting my toenails or fingernails. Buy a box of color for my hair and cover those grays. Put make up on, take a nice warm Bath/Shower... The point being. I have had a hard time over the years caring what I really looked like. Nobody was going to see me, I wasn't going anywhere, I felt like hell and was just going to stay in bed, etc... Amazingly, how doing one thing to your appearance, changes your self esteem almost immediately. The difference is that I am doing this for me... Not for other people. Taking 5 minutes or a half hour to do something for myself makes a huge impact with my emotions. Trust me, it works.

~ I have eliminated, when I can, depressing or serious things. The shows I watch on tv have an extreme impact on my thoughts and mood, especially when I am struggling that day with anxiety or feeling down.. Seriously.. Try it!! For instance, the news has a few interesting things but the majority of the news is all the bad and evil in this world. If you have to watch the news, try skipping the first 10-13 minutes of it. Instead of watching Law and Order (My Favorite) and turn on a stupidly funny show on tv.. If you try this for 1 week. You will see the difference.


That's it folks. These are the very few things I have put into place Since the beginning of January and some have just been the last couple of weeks. I think this is enough and is hard enough to just work on these. I have seen really good improvements in my mood. As I continue working on these throughout February I will work on my next new goals. Facing my Fears of Leaving the house and being around people... Oh Boy!!! I can feel the anxiety kicking in just mentioning it. For now, I will worry about today only and continuing to work on the few goals I have set into place.

Where Did I Go ~ Journal #2

The last few days have been difficult for me. The anxiety has been out of control. Its been beautiful temperature wise, but gray and gloomy out too. Makes me wonder if Winter has something to do with this craziness, I am going through. For instance, the last 3 days have been gloomy out and I just wanted to stay in bed and hibernate. Today, I woke up at 4:30, kind of dreading another day. Mad that I couldnt sleep. I made the coffee and watched as it went from darkness to light outside. I peeked through the blinds to see gray skies, yet again... In an instant, around 9:00, the skies opened up and bright sunlight is shining down. Instantly, without realizing it, I am staring at my bed. Not thinking about climbing back in... I start tearing the sheets off and throw them in the wash, while in the kitchen I decide to start cleaning the counters and picking up all the clutter. I walk back into my bedroom and throw down the yoga mat and start exercising and doing yoga stretches. Whoa, what is going on with me?? I get back to cleaning and writing a list out of things I need to do and get from the store. I am still going strong!! Just wanted to stop and process what is going on today? Is it the Sun, is it a fluke, is it that I am sick of laying in bed and hiding in my room? I have no idea! I guess I dont have to have the answer, I just need to enjoy it while it lasts. Happy Superbowl Sunday and hope you are enjoying Your Day!

Where Did I Go??

Happy Ground Hogs Day! It's amazing how fast time goes by. I was looking back last year at how few Blogs I wrote and how many times I really intended on blogging. I have had lots of topics or ideas that I thought about writing but never could find the energy or ambition to write. This is just a glimpse as to how things have been going in my life. Depression, Anxiety, and Phobias have taken over my life and I never saw it happening until it was almost too late.

Being diagnosed with Multiple Sclerosis was very hard. I was diagnosed in March of 2007, after a very long and rough exacerbation. Now looking back, I would say that the depression first started. If you don't see it happening, you don't get help. As the years have gone on so have the pains and symptoms. I spent more time in bed and unable to do all the things I used to do and even wanted to do. If I had a good day, I would push myself and then suffer for days. Heck, who am I fooling, I still am going through that. It wasn't until last Fall that I started realizing how distant I have become from everyone. The Holidays were fast approaching and the worse I was feeling. I was waking up sick, the pain increasing, was crying from the second I woke up until I went to bed, and much more. It wasn't until the day that everyone was leaving the house. I started shaking, felt like I was going to be sick, had this horrible sensation of fear, and then started crying. Are you kidding me? I am afraid of being alone? I felt like I was losing my mind. What is wrong with me?

I have always refused talking to a therapist, mostly because there was nothing wrong with me. Or at least I didn't think so. After a few more episodes of this craziness I had to make that dreaded call. By the time I went in to see him, it had become even worse and was happening everyday all day long. While talking to him and answering his questions, I actually was becoming more and more embarrassed with my answers to these questions. I am the type that avoids calling the Dr's until a lot has built up, mostly because after being diagnosed with MS, I find that everything would get blamed on MS. When I do finally get the nerve to call and go in to see them, usually the issue is at the extreme and then I want fixed... I WANT FIXED NOW!!! I guess I forget that the issue(s) may have been fixed fast if I would have gone in but I let it go months and months. So, of course, I went to the Therapist, answered the questions, and expected him to fix whatever is going on.

It didn't go that way. I am listening to him talk and it was like a Charlie Brown's Cartoon. "Wait... What did you just say"? The Therapist said it again. "You are having Severe Anxiety Attacks, You have Major Depression, and you are suffering from Agoraphobia this is very common in people that have been very sick for a long time. Part of this can be due to the MS". I kind of giggled, in disbelief or maybe embarrassment, and then hit him with my normal response. "OK, so how do we fix this? Christmas is in 3 weeks and I have to be around all our family and friends. It's been over 3 weeks since I left the house and the idea of being around everyone is causing this to get worse and worse.

Then the dreaded words came out... "This has been going on for years, this will not be an easy or quick fix. How bad do you want to live, keep your family and friends, and most importantly... be happy and live your life again"? Of course I choose to get my life back and most importantly be happy. I miss the "old me" I feel like I have lost me and people expect so much out of me and don't understand or don't care. I worry about everything and everybody, I care so much about others and continue to get hurt everyday. I never speak my mind, out of fear of hurting other's feelings but they do it to me all the time. I wish I had the switch that other's have to make me not care. He responded with " You are You and You can't change the way other's are and how they will treat you. All you can do is learn to find ways to cope with being hurt, let down, disappointed, etc.. If that is the life they choose to live to make them happy, that is their choice. All we can do is work on what makes you happy and how to cope or handle those situations".

This is the beginning of finding "ME and My Inner Happiness". Does anyone else feel the same way or go through the same battle as me? Have you ever wondered "Why Me"?? Well, I always do and always come back with the same answer and that is... To help others. As hard and embarrassing as this is to me. I will journal my Journey as often as Possible. I get through life by helping others and I hope this will help others. Feel Free to Follow along and see where this journey leads... Hopefully to finding my Inner Happiness.

Symptoms Of Multiple Sclerosis and Info Links

I am in the middle of a Flare Up and have been spending the day reading questions people have about Multiple Sclerosis. I don't have a lot of energy to write a Blog but I couldn't resist this... I found a Wonderful Page that someone has taken a lot of time to list Symptoms that are common with Multiple Sclerosis. I hope this is helps answer a lot of the questions you may have or your family and friends.

Please follow this link and see all the symptoms that are common with MS.

http://www.mult-sclerosis.org/mssymptoms.html

The Spoon Theory

I was diagnosed with MS back in March of 2007. I have heard references to the "Spoons" or the "The Story about the Spoons" but today was the first time I had the chance to read the "Spoon Theory". I think it is a great way to help explain how having MS feels like. I decided to share the "Spoon Theory" with you.

The Spoon Theory


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