What is the MonSter?

May 24, 2013

Spoons?

I found this way of describing autoimmune diseases like Lupus online the other day and it made so much sense, so I will do my best to adapt it the best I can. But this is how I would now describe to someone who asked me "What is it like to live with MS?"
Each day, people get up, get going to work, maybe eat breakfast in the morning and then are off for the day. They don't have to think twice about it. Most people are able to just go about their day thinking of their work, family, friends, their plans for the night or the weekend ahead of them. (If I was sitting with you right now I would grab a bunch of spoons) I would grab spoons and give them to you saying "You know how MS." You might look at me like I'm nuts, but I'm not (well not completely). But bear with me here... now you are holding a bundle of spoons, count them out for me-- you have 10. You might laugh a little bit not really knowing where I am going with this.. but it will be good I promise. Ok, you now have 12 spoons. Now tell me about your week and the things you have to get done, or your weekend plans.. tell me those; are you gonna go out with friends? Stay up late watching a movie? Are you going to go bowling or who knows.. think about it.. what do you do? Are you in school and have a huge midterm or final coming up? When are you going to study, when are you going to sleep, eat, socialize  So give me a list of the things you are going to do. I don't just mean leaving the house and going out, I mean the little things too, like cooking, cleaning, exercise. Ok, so think about that list for a second.....
How many things came up in your head that you would do in a day? Ok, come back to me and now we will get to the spoons. Each spoon is a symbol of a task you can complete in a day. Not very much right? How fast did you run out of spoons? Now what do you do? Just give up on the day? But how are you able to complete the tasks you have to do... well I guess I could borrow a spoon from the next day. But then it wrecks that day and can quickly become a downward spiral. But for those who aren't 'sick' most people have unlimited spoons so they don't have to think quite so hard about it. 

Interesting thought right? For me, during school and say midterm weeks my spoon collections seemed pretty limited. There was only so much I could do, and at a certain time my brain would actually just shut off from exhaustion--and at that point I would only have about 3 more spoons left. But I have an exam the next day, classes ended at 12, so I have 2 decent hours to study, but I need lunch that takes time, so then I have 1.5 hours. But the beginning of my week was brutal and I just need to rest. So I go home, eat, sleep, maybe go for a walk, try to study, and then go to bed at 8:00pm. OR I can borrow a spoon from the next day...sure, I'll take some caffeine  and stay up later and study. However that wrecks the next day because now I have one less spoon for that day. I am now even more tired. I panicked all night about this test, I didn't sleep well and now I have to go write a test and I am kind of freaking out.
At times I find myself thinking about what I can do or counting my spoons in the afternoon on a Friday and friends are hanging out and want to go have a fire. But I do have think about my weekend and hte week after that because if I stay up late, and my body has now decided that no matter how late I stay up I get up by 7:00am. So I am going to have to borrow spoons from other days, and it might not be just one day, it could be a few days in a row.

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So that is my Spoon Story. I hope it makes sense... Here is the link to the original story that I found the other day: Spoon Theory. I am pretty sure her story might make a little more sense.. but my disease is a bit different than Lupus, so I hope that might be able to help you understand a disease, and not just mine but others around you too.

-Kate

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May 17, 2013

What is the MonSter?

Some refer to MS and "The MonSter," something that is unseen and scary at times and this is my MonSter.
Multiple Sclerosis is an autoimmune disease; his means that my body is fighting itself. My body has decided that the covering of my nerves, called myelin is the 'enemy'.

What an MS brain looks like.

So all the nerves in our bodies are covered with a coating called a myelin sheath. It is kind of like the way wires (computer cords etc.) are in that plastic coating. When that coating was taken away it creates problems, with a cord it is able to short circuit, with my body it creates the symptoms of MS. This is what my nerves are doing. My body has attacked my nerves, more specifically the myelin sheath which causes my limbs to be numb, vision issues etc. So after the bits of my myelin sheath is gone my body tries to repair it. After the repair, like any other tissue that is greatly damaged it leaves a scar, or multiple scars, hence multiple sclerosis (scars). These scars are located all around my brain, in the white matter and also my cervical spine.


Why don't we look a little closer at one of my symptoms; blurred vision. There are some scars on or near my optic nerve, these scars can be very heat sensitive. So when my body temperature rises it exacerbates my blurred vision. Tada! These lesions or scars also create a numbness in my hand, which to this day still has not gone away or gotten any better. Another symptom that has come about since I was diagnosed is pain. This pain isn't like a muscle pain, or a chronic ache. It is one of the most difficult pains to describe; stabbing, burning, chronic ache, comes and goes... it hurts and made things hard to study and write papers at times.


Well I hope that this was informative for you.
If you would like to know more don't be afraid to ask or check out this website MS Society.

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What am I doing now?

Monday September 10, 2012

I met with the neurologist from UBC, Dr. Traboulsee and he confirmed that I do in fact have Multiple Sclerosis (MS). He, well actually we all looked at my MRI and found 50+ lesions in my brain and cervical spine.Which yes, sounds like a lot but apparently it doesn't mean its really bad.

I saw a nurse earlier in the week and she helped explain to me my symptoms and how I can 'treat' them. The biggest thing she explained was why I had blurry vision when I exercised. She told me that I most likely had a lesion on my optical nerve, because she hadn't seen the MRI she was making a very educated guess. She explained that when I exercised of course my body temperature went up and the lesions are very heat sensitive so they react to that. Hence the trouble with vision. This was before I had seen the neurologist.

Dr. Traboulsee described to me and my family that I have a very aggressive form of MS and that I should be on some sort of treatment very soon. He was very positive and encouraging and presented a few options for me, treatment wise. He at first showed me the 5 or 6 regular drugs that would help with the side affects of MS. (For any of those who don't know MS, is not curable but it is maintainable.) He also informed us that the majority of these drugs would be less than 50% affective for me, because of how aggressive my MS is.
At this point he left the room and came back with in 30 seconds with a large stack of papers. He then asked us, more specifically myself how I felt about drug trials. He then told us about a specific drug trail that he has been working on for a while now. He became quite excited about this as he told us what it would involve and how great this new drug was, "It knocks the socks off MS!! to quote.
So after the meeting with Dr Traboulsee I went home and thought more about the drug trial. At this point I am on day 202 of the trial and have 528 days left.


Kate