This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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One Of Those Days......

Today was one of those days where I just could have stayed in bed all day! That is not what I did, but it did not start good. I definitely woke up on the wrong side of the bed, if you will and was running late (which seems to be an issue lately). My fatigue is ALWAYS a problem and some days it takes every bit of energy for me to pull myself off the bed for basic things (showering, hygiene type things) only to go lie back down because I feel like I was lucky to have made it through that. I thought that my fatigue and over all pain was getting better, or at least it seemed to be over the last month but this past week or so I have been in a lot of pain. I have been having a difficult time walking and even being able to pull myself up to stand up and then when I do stand up I feel like I will just fall over. The upper part of my legs especially hurt but it is like the rest of my body just doesn't have the strength to even pull me up (really sucks). Oh, and to try and use the stairs...nightmare! This is why I eventually need to move into a single story (downstairs) apartment.

Anyway, it took me forever to get ready this morning and I was supposed to have Nate over to my parents at 8:30 this morning so that I could leave for the MS conference in Yakima (just over an hour away) that started at 10. My dad calls me at 8:20 and says "Do you know what time it is, you need to get here, you're going to be late!" and starts lecturing me. This did not help at all. I was already having a bad morning and it took all my energy to just get out of bed and ready....I did not need him to lecture me, so I told him that and hung up. I really wanted to say something along the lines of "It must be nice for you to have a body that allows you to get up and out of bed in the morning! When your legs don't work and you have the level of fatigue I do everyday, then you can lecture me." Of course, I didn't...I just hung up. I don't think that people (even in our own families) really get it though. It's not like we are just tired for the heck of it (cause we were out all night or something) or being lazy. We have a medical problem that actually creates these issues for us, and I am very aware of what time it is pretty much all of the time because anymore I seem to always be running late and in a hurry because I just can't get my body to cooperate. There is ALWAYS fatigue for me, but some days there are other things too....pain, numbness, weakness, spastic legs, I could go on and on. Each day is different and I really try not to focus on that...I try and focus on the good things about the day and trying to just go on. I really don't need more reminders of what is happening to my body or to be made to feel bad because of something that I can't control! It did not help that Nathan was being difficult either (but I am sure that some of that was him responding to me).

Fortunately, my parents are very supportive when I need help (I think there is just some things...like above that they maybe don't understand about this illness) And, I know some of the problem is that I need to talk to them more about this stuff, but as much as I don't mind talking to them about MS in general....I really hate to talk about how I am doing when things are not good. Sometimes it is almost like they just don't want to hear about it (which I am sure is not the case, I know they love me and care about me) it's just sometimes it seems like I am being a burden. Sometimes I get comments like...you need to toughen up, you used to do so much better in these situations, what's the problem? Well.....I have MS and it can mess you up both physically and/or emotionally. They are right, I can't handle stress like I used to and I now have depression to add to my list of health issues. I would love to be as tough as I used to be, but lately I am an emotional mess (whether it is irritable or just sad) it is just one more thing to learn how to deal with.

So, I called my mom and she had my dad come and pick Nate up so that I could make it to the conference on time. I made it on time (it was about Active Living with MS) and I was able to get lots of great information (which I will get posted as soon as I am feeling a bit better). I was not sure what to expect, but was very happy with the conference. It was hosted by the Multiple Sclerosis Association of America (MSAA) and I had never attended one of their events. There were a couple doctors from the Seattle area in to talk to us about why it is important to be on one of the MS medications and what we can do to feel better (EXERCISE)! Also, Wednesday I went to a MS conference hosted by the NMSS on MS and Genetics. The doctors were unable to attend, so we watched a video that basically told us everything we would have gotten from the docs (only without the Q&A at the end). This conference ended up being a great thing for me to go to. I got to meet up with Erin from the Greater Washington NMSS Chapter (based out of Seattle) who by the way helped me to get my gym membership (Thanks Erin!) and we talked for quite a while.

I have been doing a lot of thinking lately and this is what I have come up with. There are quite a few MS foundations (and other non-profits) that have been established to help people with MS. The thing about it is that most of them are focused heavily on research and finding a cure (which is great, that is the ultimate goal!) but the reality is that this illness has been around for years and it is still a very unpredictable illness. We would love to think that there will be a cure in our life, but don't know for sure. Also, if there is a cure...what would that cure look like? So, with me starting to feel better (much due to working with the personal trainer, the dietician, and getting in the pool), well until this week that is, I started to think about who is focusing on helping us to have a BETTER QUALITY OF LIFE so that if we do find a cure our bodies are as healthy as possible, therefore maybe we will be better candidates for that cure (and our bodies won't reject it) or if we don't see a cure during our life (as we know one day there will be one...at least we have to remain hopeful) than we will have lived the best possible and healthiest life we could have, even with this illness. Why should having this illness mean that we have to sit at home and wait for someone else to find a cure before we can live a good quality of life? That doesn't sound right to me...and personally I am getting a little sick and tired of hearing that is how it has to be.

So, then what? Well, the NMSS has some resources...but not a lot (they are trying really hard to get more and do better however, so push them for what you need) and so I thought maybe I would look into what it would take to start a non-profit, so I did just that. I looked. Problem is that is can be very expensive just to start a non-profit organization and it can be a very long process (anywhere from 6 months to 3 years to get started). Personally, I don't want to wait another day let alone 6 months to take control over my MS and no one should have to. This is where the NMSS and Erin come in. I talked to her about my ideas and she loved them, some of them they have been trying to figure out a way to make happen and so she was really excited to have me come on board. I am going to be a MS Ambassador for the Central Washington area and work to help get some of these ideas in to action! This way, if we can be successful in our chapter...there is a lot more pull to get it to all MS'ers (because they are everywhere) and when they see programs working in one area, they tend to try them other places too! And, seeing how I can never stop at just one thing...I had to throw in all of my rants about SSDI. They have a woman named Ruth who works to help fight for MS'ers when it comes to these types of things (government policy, etc.) Erin is going to get me hooked up with Ruth so that I can be a part of that committee too! I am really hopeful that maybe we can get some great things accomplished together. It will take some time and effort, but the end result will be worth it!

Well, the day ended with me driving back to the Tri-Cities to pick up Nate and getting him home in just enough time for his friend (Kolton) to come and pick him up for the Dustdevils opening game (against the Vancouver Canadians....Dustdevils won!) He had a blast and was so glad he got to go. My night has been quiet with me just relaxing and trying to feel better. I have not been sleeping well lately either, so hopefully I can get to bed early tonight and get some good sleep. Maybe then I can wake up tomorrow and have a good day.....feeling better and with more energy! That would be nice.

I hope you are all having a good Weekend. Take care!

Link...Don't loose hope, everything will be okay! :)
This is for you Dave!

2 comments:

personallog! said...

Sorry not been chasing things up for a bit. Great selection on the tune. Love ya babe, be well!

Dave
x

Jaime said...

Not a problem at all! I hope you are getting some much needed R&R! Take care of yourself. Love ya!

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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