The Short Stick

I went away this weekend. To get away as a family after our hockey season. But before we left I half jokingly suggested that I not bring my meds. Shawn said ya and that he was thinking the same thing. 

What a weird feeling. To know that I was going to purposely miss a dose. It felt like I was sneaking out of the house past curfew. 

We pulled out of the driveway and down the street I realized that I actually had forgotten to pack them. I told Shawn and we decided not to go back for them. I was feeling guilty, yet relieved at the same time. 

Taking the medicine makes me tired. It makes me function at an even slower rate. I finally feel like myself two days after but by then it's time to take the next dose. So I usually end up with a good afternoon and evening and then start the process again. This weekend I was tired. But I had fun and got through Saturday which was the longest day. We shopped and by supper I was done but I knew that would happen which is why we planned for a movie that night. Also, I got to sleep in on Sunday because checkout wasn't until noon. 

I slept part of the way home and then until noon again today. And now I took the meds again. I told Shawn I don't want to take them. He told me I had to because I don't want to end up crippled. My response was that I'm living that way already. When I'm too tired body wise to accomplish anything. When it takes so much preparation to plan a day. 

I know it's not the same but it makes me angry. For some reason I want to throw in the towel with the meds and just live the best I can. It's like getting the short end of the stick either way. Just one takes longer to get.  Do I want to risk more severe issues in the end to live a better life now?  Or do I live with the limitations now and still get to live?  What if I don't take the meds and I'm no worse off in the end?  Only God knows the answer to that question though. 

The best example I can think of is the cancer patient who doesn't want treatment so they can live the next two years because they just want to live the next 6 months of their life to the fullest. Not with all of these limitations and feeling crappy. I know mine is not to that extreme but the idea feels the same. When do I want to grab the short stick? Now? Or later? 

 

Celebrate and Savour

I turned 33 yesterday. Not a huge milestone or anything but still. It made me question what do actually do when we "celebrate"?  Are we celebrating in certain ways?  Do we have traditions or something different that we do?  Why do we grow up and say that you're too old for a birthday party? Are we?  If it's a day to celebrate we should do just that. Celebrate. However that may be.

Oh but wait....every day is a gift and we should live like that's so. But do we?  I read a devotion last night and the lady in there had went to someone's house. This elderly lady never did two things at the same time. She wouldn't sit outside and enjoy the sun and conversation and have her tea and chocolate at the same time. Because she didn't want to overcrowd one experience with another. Maybe that's a bit extreme but the idea is good. How often do I overcrowd my day trying to multitask everything all the while not really be able to enjoy any of it? 

I want to celebrate and savour each day that I have. Take the time to enjoy the good moments even if the day has only one. What are the chances I'll miss out on it if I overcrowd it with everything else?  Probably pretty good. And how often in the process do I miss out on the good things God is telling me because I've overcrowded my day?  

I know this isn't directly talking about my MS but in a round about way it is. There are many days when it doesn't feel like it's a celebrating kind of day. But I shouldn't need an excuse like a birthday. I should be looking for the good and relishing those moments in the midst of the bad. Not always an easy task but I think I need I slow down. Maybe now more so than before. 

Basic life

I think I'm just going to start blogging about my life in general.  Letting you know what happened but still touching on how my ms is or isn't affecting me. The emotional toil it has on me that day. Etc. 

Like today. I got a call at midnight to go to a friends house because her water had broke. I was there until 6am and then fell asleep for a short bit. Got the kids up for school and went back to bed at 12:30. I forgot I had to meet someone at 2:30 so when I received the phone call that I wasn't there, I got up to go. Then off to the rink for the rest of evening. 

How will that affect me tomorrow?  Probably not great but we will see. I put in a full day on Saturday. Was dead tired Sunday but kept going and then Monday I didn't get out of bed until 1:30pm. I barely got up Tuesday too. 

So I know my household is suffering with me sleeping in the afternoon and struggling to get up but my evenings are very busy at the rink. Come the end of March things should return to normal but I'm running out of steam and my personal life can feel it.  I thank my kids for not complaining too much and because it feels like I hardly see them lately but they've been very patient. I really am blessed. I promise I'll be a better mom next month :). 

The Secret Side

I'm laying here thinking about how this sucks. I can see it coming. I know the signs but sit in denial yet again. I've had symptoms for weeks now. Here and there. On and off. It's just been more constant. 

I woke up today with back spasms or cramping. I googled it. Only because I sometimes have no idea if it's a symptom or something else. It can definitely be related. So then I go to the rink and at intermission I feel like I have jello for legs. I get home and crash. Sleep for a good couple of hours only to wake up and have the left side of my face numb and weak legs. I go to the rink again and I wonder why I push myself. I don't know. I guess I just try to live as normal as possible and it's better than sitting around here.

My friend asks how I'm doing and I start crying. Right there in the rink full of people. I lay here with tingling legs. It's easy for me to put a brave face on. Kind of have a split personality. Lol. I tell you this especially for those who saw me today and think everything is fine, to say that things are not always as they appear. And to be real in this blogging experience. 

It's easy to hide things when you don't have a visible crutch. Everything is not always as it appears. It's like a secret side of life. So please be slow to judge. Not only in my case but in the case of others. You never know what life is like for someone else. So show them love and kindness instead of anger and ridicule. 

And thank you to my friend(s) for asking. :). Sometimes you just need a shoulder to cry on. xoxo

Justification

I still struggle with feeling the need to justify myself to others.  I don't deal with insults or rude remarks but sometimes its the questions people ask.  I answer, but feel this need to have them understand and to agree with me.  I want so desperately to have someone understand exactly what it is I deal with.  Why I can do some things and not others.  Why I do or say the things I do.  This disease is so complicated.  Mood swings, slurred speech.  Things that you would just chalk up to being grumpy or mixed your words up (haha).  Forgetting things like meeting your friends for a date.  It's not that I don't care or that I'm caught up in my own world.  I feel like these things are getting so much worse and it's harder for me to act like myself.  There are days when I just want to stay away, to be in my own world.  But on the other hand there are days when I can't stand to be myself cause I'm driving myself crazy!

 In some aspects of this disease it feels like a mental illness.  They say it causes depression.  I'm not depressed because I have MS but there are days where I think I feel that MS is causing the depression, much like a drug can cause depression.  Don't get me wrong, I'm not depressed but I have days that I feel angry and short fused and I know it's because the MS is causing it.  It's not a conclusion you can come to overnight because you need to take in many other factors.  See there I go again....feeling the need to justify my conclusion. 

I'm frustrated and feeling pretty alone in this battle right now.  There are things that are going on in my body.  I know things aren't normal right now and if I was to have an MRI right now I would bet money that I have "active" lesions right now.  I just really really wish that I was normal again.

What does it really mean?

What do I think of research?  Do I believe they will find a cure for MS? Those are tough questions because I don't have a straight forward answer. 

People come knocking on your door. Others phone. Everywhere you go it always seems like there is some other charity or cause to give to. So what does it mean when you give to a cause?  It depends I guess. Depends if it's something near and dear to you or just an obligation or in support of someone. 

Sometimes I feel like research is futile. Cancer is still out there, Aids, Diabetes, Heart Disease etc.  But when it comes to MS it is now something that is obviously near and dear to my heart. Was it before?  Nope!  I didn't even realize what it was. It was just something I had heard of before, and I had many misconceptions about it. 

Last year I decided to start a team "Grace" to participate in the MS walk. I had never done anything like this.  Little did I know that this team would grow to over 30 members and raise almost $10,000!!  The Morden coordinators were shocked. We were in the paper, and my husband was interviewed on the radio.  And in all of that it helped me. I'm not used to having people know how I have something wrong with me. The interview with the paper and radio was something my husband did because I just couldn't tell them. I couldn't say what wrong. I felt ashamed. I felt like everyone was now staring at me and it made me uncomfortable to ask people for money. So what did I do?  I "Facebooked" it....a lot!!  What happened?  We raised a lot of money!  Even if I annoyed the heck out people! Lol. And the next best thing was was that I felt support. It was more than just the fact of people giving money. It showed that people actually cared. People I had not seen since high school, people in the community that we had only been in for 2 years gave us money from their wallets. Hard earned money that could have been used on so many other things. They gave it...to our team...in support of me. 

Research for MS has come a LONG way. More so than many other diseases. Medicine from 20 years ago has changed the course of MS drastically. So yes I have hope. And not a fleeting kind of hope but a strong hope that there will be more breakthroughs giving people back their quality of life. 

So when you give know that it means more than just the fact of raising dollars. It shows the person you care. No matter who you are or what you are giving to. It matters to someone. 

To make a donation or to join team Grace in the Morden walk go to 

www.mswalks.ca 

My Heart Breaks For The Man I Love

I'm struggling with what to call this post. In some ways the inevitable has finally happened. The walls of Jericho tumbling down may seem excessive but somehow fitting.  The mighty giant has fallen?  That too seems a bit exaggeratory.  However I hope you can catch my drift.

We've all heard the saying of when life gives you lemons, make lemonade.  That's easier said than done.  It sometimes feels like it takes the length of making wine. And hopefully when it's finished it tastes good or you waited that long for nothing. Okay enough with the metaphors. Especially since I don't even like wine.

My husband has finally let this hit him. And now he has a to take the road ahead. A road that not many have travelled. I have. It's tough. Every day is a decision. Not to be angry. To get out of bed. To put one foot in front of the other.

Asking God "why?"  I'm not sure what the stages of grief are but I know one of them is anger. Probably the biggest one that I've had to go through. Questioning God and just being plain mad!  I don't know what the days ahead look like. I don't know how to help him. I don't think I can other than to be by his side like he was for me and to pray for him. 

There were two devotions I read today (because I missed yesterday). And oh how fitting they were.

It's almost a relief to finally know that he feels something!  But it breaks my heart because I know how much it hurts. I think I know now what to call this post.