Its been a long time

I really need to try to post on here more often, even if it is just a sentence or two.

Today is a really hard pain day for me with my hands so I can't type but just a tad but hey that is pretty much every day now... my hands have hurt every single day for almost two years (not one day without!) and yet, it seems to be getting worse and worse.. even holding a telephone to my ear causes my hands to go beserk with the tingling/numbness/burning and pain.

Wish I had help it is hard doing things on my own and even harder to have to admit them. I feel pitiful and pathetic more days than not lately.

I allow people to harm me still when I try to do things and fail. I need to learn to tell them to back off but sometimes just the shock of being demeaned in front of others throws me off balance enough to not have any time to react so I just sit back and take it.

I wish... I wish.... there was a device or something that could allow people to touch me and feel .. really truly FEEL what I go through every single day.. every day.

It's 87 degrees in the house right now

Phew it is hot in here... I can't wait until my parents come next week and help me by moving the air conditioner from the shed to my window. It just numb dumbs me when it gets hot and then my hands start aching and burning amongst a whole slew of other issues that get exacerbated in the heat.

I have so many doctor appointments coming up... sigh. That viscious cycle had really slowed down for a bit so I should not complain. For awhile there every month I had several appointments so now that I have gone a bit longer in between I am moping about it because of course, I'd rather not have to go at all.

Tomorrow I go see my GP who I am happy to say I haven't seen her since December; however, I did see another GP three times since then with the last time being in March. Then I get to go in this week for then lab work.. wee I tell them if they keep poking me maybe some of the fat will escape out but alas, it has not yet happened.

I got my other appointments finalized today... I go see my Urologist, my Neurologist and get my MRI done in August. - Great birthday month for me huh? My one-year anniversary is July 23rd so I knew August would be busy.

Here we goooooooo - are we ready for the rest of the summer fun? I am very much looking forward to the fall!

The Smiles Continued

It was another great day and I really enjoyed myself. I loved being out and about at the swim meet. I even think I may have learned to avoid the sun and heat and remember that I need shade and cooler areas every now and again to help me keep going.

I am heat sensitive which means that my symptoms go haywire wacky in the heat. So no more being supermom, just take things in stride and then I can last longer in the day..... see baby steps I am learning.

I also got my blood pumping this weekend and well... it felt good and left me with a bigger smile. See I just got dumped by a guy about a month ago that I had been with for three years (yep by texting me saying "I can't see you again because I have a girlfriend.) Super nice because after us being together for three years he refused to call me his girlfriend saying he just was not ready for that yet... BULL HONKY! I kept breaking up with him only to have the low self esteem to go back to him over and over again. After my diagnosis I tried to really stay away and managed well for a few months only to of course go back and with him stating that he really really promised to not hurt me again *ugh stupid me*. He was selficious in bed and out of bed so hey... I taught him what I could so now it is time for another to work with him. He made me believe that I am not worth being called "girlfriend".... and I know that is wrong but of course it is still there inside me and has done its damage to my already faltering self esteem.

Now then back to my blood pumping... well I met a very nice and extremely good looking man this weekend. When I talked to him it was just well you know general talk. It was not until later today that we really talked and I wondered if we were both flirting with each other! ACK! No, no, no! I cannot go down that road because right now I see pain so yep I will let my blood pump but in no way shape or form will I invision us being together. For once I am certain he learns of what comes along with me now, he will be running away as fast as he can. I am okay with that. I am not okay with being single... I do want attention and affection, but I am relastic now that it probably will take a very long time for me to come across a man with enough compassion to be with me as well as the realization that it just may never happen at all. I won't ever be truly okay with being single, but I just will have to accept that maybe the alternative of the possibility of getting hurt would be a lot worse road to travel huh.

So good luck to Justin and his "girlfriend", I do wish him well.

Yep I still am smiling.... I see this very good looking man again on Thursday - so it will do good to get the blood pumping again... but this time I will try to rope in any flirtation that I may be doing! My daughter even says, "Mom I approve of him".. rolling my eyes - she never has approved of anyone I date so the one guy I will never date she approves of?

Lots of Smiles

Today actually turned out to be such a wonderful day for me! I hung around with some incredible people and I just felt okay. I thanked my daughter's "surrogate mothers" who have been helping her out this summer when I am not able to. I just never think saying thank you and giving a hug is enough. I want to show them just how much I appreciate them!

It was funny though in the afternoon. The heat was starting to get to me but of course I smiled :) I was walking to find my daughter before her swim and saw a few people look at me with very concerned eyes. I walked over to them and I was laughing. I was then asked by one of them "Are you feeling okay?" I said yes and she said "It looked like you were going to fall." I said... well I am drunk ;) Not really of course I just started experiencing that famous MS drunk moment - of which I am currently still in. I told them that sometimes my balance is odd but by me grabbing on to that post everything worked out just fine. They made the comment that at least I can laugh at things and I told them "Are you kidding me! I am walking entertainment."

Also today I did thank a woman I was talking to. I was stumbling with my words. I had them in my brain but of course they just take awhile sometimes to come out. My daugther is good about finishing my sentences and I remember I used to get irritated by that (not at her... but irritated at myself). Anyways, during the conversation this woman who I am not around very often at all and we truly do not know each other expect our kids are in swim team together, and here she was finishing my sentences for me. She did it in such a smooth flow it was great! I laughed at the end and told her that I noticed she was helping me find the words and I just really thanked her for being so great about it!

Also another mother happened on taking a photo of me and my daughter snuggled up together. See when my daughter gets out of the pool from one of her races, I love that she comes and gives me a big squeeze hug! Here I am hot so I do not mind my clothes getting big wet spots on them... I LOVE IT!

See today was great. Even the ones that give off that "your are not good enough to be around", I smiled and told them a compliment. A true compliment not a fake one to get on their good side. I realize there are always going to be those people that think I am lower on the chain then them but you know what, I cheer their kids on, talk to their kids no matter how mom and dad look at me.

See I am smiling right now because today I took a huge step in my acceptance!!

I also visited with a girl that I have seen come to the swim meets for years. She is not a mother, she is a friend of a friend. I know who she is, but never really talked to her. So today I did and I found out that she is such a neat girl! Turns out she is eight days older than me so we are close in age. She is in a wheelchair and has been in one since she was 17. She has muscular dystrophy. She is so very pretty! I am so glad to have met her as a friend. MD and MS are different - but you know what we have things in common. I am mad that I never took the time to really talk to her and get to know her before! She is supportive of my daughter swimming, etc.

I do not want to believe I was one of those people who see the wheelchair and not the person in it! Shame on me! Thank you MS for making me grow up and really learn to look past everything when you see a person. Do not look at them as fat, skinny, beautiful, ugly, disabled, etc. - look at who they are inside. If you talk to someone long enough you just might find that you see someone who is incredible.

I'm Worried About What People Think

I hate these nights when I can't stop thinking in order to go to bed. I can't stop yawning and I'm exhausted but you know how it is when your mind starts going down the worry road right? Everyone has experienced this. Tonight it is because I am worried about what people think. I'm sad that I have learned since my diagnosis that very few people care about me.

I am worried about tomorrow morning. It is our local swim meet here in town and I am worried about how I will handle it. I am supposed to help volunteer for it and I'm scared that it is going to be too hard. I'm scared to see the looks of disgust on people's faces if I have to leave early etc. My daughter has been in swim team for 9 years, been there... done that right so I should be able to handle it right? Wrong! Last summer was awful for me and I only went to two meets but that was before my diagnosis and made a whole lot of sense as to why I felt crummy last summer once I was diagnosed.

Anyways I am worried about this weekend because last weekend I felt like an idiot. Everytime I try to talk to any of the swim team parents I feel like an idiot. I do not know how to express in words what is really going on with me. It ends up making me feel worthless, a complainer, or someone seeking attention. I had not gone to see my counselor in the last few months because I thought I had reached a better acceptance level, however, after last weekends swim meet I went to see my counselor and cried over the events of the weekend. See there is a swim team dad who has cancer and my heart truly truly aches for him and I am so glad that he has the support of his wife and parents to be there and help him. Here I am on my own... me... I try my best but sometimes I just wish there was someone here to help drive my daughter to her sporting events, school events, etc etc. I hate that when I mentioned how fatigued I was or how hot I was etc, that I felt like people were rolling their eyes at me for complaining. At one point last weekend (Sunday after check-out for the hotel) I was so fatigued that I actually went and slept in the car with the windows rolled down baking in the heat. See the fatigue is not just from the heat... it just is because sometimes... and also it was because I was around a whole lot of people with a lot of activity going on and that is taxing on the energy sources.

I hate that I feel so very alone most of the time because so very very few people in my life have taken the time to even ask me or read up on MS.

So tonight is a depression night, a worry night... and I will shed a few more tears to help me go to sleep. Tomorrow and the next day will come and I will just do what is best for me.

Do I just shout out "Do you not realize that if I do too much and push too hard that I run the risk of more lesions popping up on my brain????"!! I want to scream at people to stop talking badly about me or rolling their eyes at me, etc. I think EVIL EVIL thoughts in these times and wish upon them that they experience my life and see for themselves just how it feels..... shame shame on me I know.

Tonight I am scared, mad, depressed, fed up and just tired of living ........ but really who in my life knows that is how I feel? MS SUCKS! My life has forever changed...... I know that inside I am a better person with better understanding and a deeper caring for people... I know that MS has blessed me in some ways...... but I hate how all I do is hide out in my home and hermit myself now because I am scared of what people think of me, what people say about me etc.

Well... just had a dizzy spell so guess I'm pushing myself way to hard so I will be done with my pity party rant and just go off to bed.

Last thought: When I was diagnosed I talked to my brother and his words have haunted me and stayed with me now almost nightly: "Nobody will go to your funeral when you die, nobody cares about you."

Do's and Dont's

Okay so I was going to keep this blog more along the lines with how I live with MS etc. but here is another thing that came my way and I wanted to share it because it is just the thing that needs to be out there for others to read....

Don't Assume ) The MS Do's & Do Not's

Don`t assume that just because I look well, I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.

Don`t tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different.

Don`t tell me about your Aunt Mary, her MS and how well she managed in spite of it. I`m not Aunt Mary, and I am doing my best.

Don`t tell me, ``It could be worse. `` Yes it could, I know this and don`t need to be reminded.

Don`t decide what I am capable of doing. Let me decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I`ll know it soon enough.

Don`t be upset that you cannot ease my problems. Just be there for me. That`s the most you can do. That`s the most I expect or need.

Don`t ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.

Don`t assume because I did a certain activity yesterday that I can do it again today. Multiple Sclerosis changes from day to day.

Don`t tell me about the latest fad ``cure.`` I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.

Don`t patronize me. It is humiliating and helps neither of us.

Do learn everything you can about the disease. The more you know, the better you will understand what to expect.

Do realize I am angry and frustrated with the disease and the limitations it puts on me, not with you.

Do let me know you are available to help me when I ask. I`ll be grateful. Offer me lots of encouragement.

Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. That again is the way Multiple Sclerosis is.

Do continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can`t meet you for the picnic at the end of the trail. Please let me decide.

Spoon Theory

*I came across this and had to share it with whoever reads this blog.... This very much describes my life. You may have heard of MS, know someone with MS, etc but this is _how_ it feels to have MS*

(The Spoon Theory)But You Don't Look Sick....
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 spend 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 spend most of our time laughing. As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.

She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS.She had come to the doctors with me, seen me getting MRI’s, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn’t walk another step, what else was there to know? I started to ramble on about the vitamins and the changes but she didn’t seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand.

She asked what it felt like, not physically, but what it felt like to me…having MS.As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. 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 person with MS goes through every day with clarity? I could have given up and 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 her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously 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 an 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 their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "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 MS, 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. Little did she know how serious the game would become?

I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons.But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn’t guarantee 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 the game 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 MS.

I asked her to list off her day, including the most simple tasks. 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 your eyes open and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!"I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn’t want to scare her too much in the beginning.Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order.You cannot simply throw clothes on when you have MS…its just not that easy.I think she started to understand when she theoretically didn’t even get to work yet 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 has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.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 the 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 on her computer for too long. She was forced to make choices and to 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 two spoons left. If she cooked, she wouldn’t have enough energy to clean the pots.If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. 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 maybe finally 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 answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can’t ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on 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."It’s hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very 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 the 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 and my own body before I can attack any one 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 having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom.I miss never having to count my spoons.

After we were emotional and talked about this for a 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 and we walked out of the diner. I had 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 every day? I don’t have room to waste spoons and I choose to spend this time with you."

Ever since this night, I have used the sthingy 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 look at their own life a little differently. I think it isn’t just good for understanding MS, 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 words, every time 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.