I woke up this morning, to discover that I still have MS.
Yesterday, I woke up many times throughout the day. To date, I would say that yesterday was my biggest battle with the fatigue monster. I would be up for less than an hour, and then back in bed for more than an hour. I felt useless, embarrassed, and frustrated.
I've been wondering, and thanks to a new contact, I have recently heard that interferons can help with fatigue. Interferons are those fab DMDs (disease modifying drugs). I've tried a couple of them, but currently, while deciding things for my future, I'm not on one.
When I had my annual check-in with my MS neuro earlier this month, even if he were to prescribe me something for my fatigue (which is now in the hands of my GP) he wouldn't anyway, knowing that I may likely be trying to grow my family. So while I struggle to stay on my feet, awake, alert and useful, I remind myself that there are things to help me (although not guaranteed), if I want.
I'm hoping that the fatigue workshop (a six week stretch) put on by the MS Occupational Therapist will be useful. I don't know too much about it, except that I'm a good candidate. Apparently, I'm not alone in feeling useless, guilty, confused and wondering if other people feel the same way. The discussion topics will include "what is rest?", and "creating a routine of have-to's and would like-to's".
Maybe tomorrow will be different.
Emily
in my life
Posted in babies, Rebif on by
Nobody plans to live with a chronic illness. With our ever increasing knowledge of illness and disease, and we have become a society where we can sometimes go to extraordinary measures to prevent illness. It goes without saying that a diagnosis is almost always a shock.
Before June 2006, I was planning my life with ease. I was making decisions for myself and for my future family based on my health and my talents. I had no reason not to. I had recently accepted a new job, choosing opportunity over money, and Jason and I had purchased a new house as not only an investment, but for a better house to bring a family in to. Life was only going to get better.
And then without warning, everything changed. Without an introduction, no annoying yet curious symptoms, MS was now a part of my life.
The job, and everything connected to it, are now a thing of the past. Instead of this loss allowing me to live under a gray cloud, I use memories of my work days and my success in a short time, to give me confidence.
The house, bright and spacious, selected to hold Jason, myself, our two cats, and a baby playing on the living room floor...is without the later. And this is where I have found myself for months...trying to figure out what role MS plays in this part of my previous plans.
*In previous posts, I have mentioned that two months before "I got sick", Jason and I were referred to a fertility specialist following years of unsuccessful attempts at conceiving. Early this year, I underwent surgery to remove extensive endometriosis. The other relevant information is that further health "screw ups" have made the fertility landscape even more sketchy.
I do not intend for this blog to become about our attempts at a family of 3, but rather how MS is related to all of our decisions, including those related to having a family. I can't keep the two things separate.
Earlier this year, I stopped my Rebif injections. It is recommended that a woman halt her injections a minimum of 3 months prior to trying to become pregnant.
The recent revelation that the MS is in fact progressing has given me great pause.
My 35th birthday has also given me great pause.
My desire to be a mother, and a parent along side Jason, has given me great pause.
My MS clock is ticking. My biological clock is ticking.
I am willing to give up MS.
Emily
Before June 2006, I was planning my life with ease. I was making decisions for myself and for my future family based on my health and my talents. I had no reason not to. I had recently accepted a new job, choosing opportunity over money, and Jason and I had purchased a new house as not only an investment, but for a better house to bring a family in to. Life was only going to get better.
And then without warning, everything changed. Without an introduction, no annoying yet curious symptoms, MS was now a part of my life.
The job, and everything connected to it, are now a thing of the past. Instead of this loss allowing me to live under a gray cloud, I use memories of my work days and my success in a short time, to give me confidence.
The house, bright and spacious, selected to hold Jason, myself, our two cats, and a baby playing on the living room floor...is without the later. And this is where I have found myself for months...trying to figure out what role MS plays in this part of my previous plans.
*In previous posts, I have mentioned that two months before "I got sick", Jason and I were referred to a fertility specialist following years of unsuccessful attempts at conceiving. Early this year, I underwent surgery to remove extensive endometriosis. The other relevant information is that further health "screw ups" have made the fertility landscape even more sketchy.
I do not intend for this blog to become about our attempts at a family of 3, but rather how MS is related to all of our decisions, including those related to having a family. I can't keep the two things separate.
Earlier this year, I stopped my Rebif injections. It is recommended that a woman halt her injections a minimum of 3 months prior to trying to become pregnant.
The recent revelation that the MS is in fact progressing has given me great pause.
My 35th birthday has also given me great pause.
My desire to be a mother, and a parent along side Jason, has given me great pause.
My MS clock is ticking. My biological clock is ticking.
I am willing to give up MS.
Emily
I need a break
Posted in fatigue on by
I have had a busy week. Well, busy by my standards. Even with a little getaway thrown in, I find that I need to rest. Today is the last day that I have something "scheduled", until a haircut, late next week.
Yesterday's appointment was with an Occupational Therapist, for a fatigue assessment. I'll post more about that at another time. On the way home, I realized that I just wanted to do nothing, and we were still expecting company later in the day.
So what is "busy by my standards"?
The week (and a bit) went something like this: pick Jason up from work; grocery shop; shop for 3Penny's B-Day gift; pack for getaway to the lake; play games at the lake; sleep in a strange place; pack to return home; read an entire novel in 3 days; go to Curves; my own B-Day dinner; clothes shop for Jason (see the following event for reason behind this one); attend a family funeral; one hour appointment with OT; visit with friends in town from Calgary; have coffee with neighbours; and tonight...for the last act, video C-Dazzle and Jay's kitty cats.
Throw on top of that, daily living: shower, eat, tidy house, and talk.
Did any one thing push me over the edge? No.
Could I have better planned things? Yes, but that may have involved saying, "No".
Do I need to get over the ever-present guilt of saying "No"? Yes.
Is a good night sleep the solution? No. I'm not tired. I'm fatigued.
My full conversation with Jason involved me saying, "Oh yeah, this is one of the reasons WHY I don't work". Every once in a while, I need a reminder. I also told Jason that I am lucky he understands my fatigue. This doesn't mean that he tucks me into bed while saying, "Don't worry, I'll look after everything". This isn't roses and ice-cream for either of us, and he is tired from work. But he knows that his tired is different from my fatigue.
It does mean that he never acts hard done by, and he doesn't say things that cause me to feel guilty. Sometimes I do need him to get me ready for, and into bed. Sometimes he has to finish the things that I started. And sometimes I need to cry, and that's okay with him.
Emily
Yesterday's appointment was with an Occupational Therapist, for a fatigue assessment. I'll post more about that at another time. On the way home, I realized that I just wanted to do nothing, and we were still expecting company later in the day.
So what is "busy by my standards"?
The week (and a bit) went something like this: pick Jason up from work; grocery shop; shop for 3Penny's B-Day gift; pack for getaway to the lake; play games at the lake; sleep in a strange place; pack to return home; read an entire novel in 3 days; go to Curves; my own B-Day dinner; clothes shop for Jason (see the following event for reason behind this one); attend a family funeral; one hour appointment with OT; visit with friends in town from Calgary; have coffee with neighbours; and tonight...for the last act, video C-Dazzle and Jay's kitty cats.
Throw on top of that, daily living: shower, eat, tidy house, and talk.
Did any one thing push me over the edge? No.
Could I have better planned things? Yes, but that may have involved saying, "No".
Do I need to get over the ever-present guilt of saying "No"? Yes.
Is a good night sleep the solution? No. I'm not tired. I'm fatigued.
My full conversation with Jason involved me saying, "Oh yeah, this is one of the reasons WHY I don't work". Every once in a while, I need a reminder. I also told Jason that I am lucky he understands my fatigue. This doesn't mean that he tucks me into bed while saying, "Don't worry, I'll look after everything". This isn't roses and ice-cream for either of us, and he is tired from work. But he knows that his tired is different from my fatigue.
It does mean that he never acts hard done by, and he doesn't say things that cause me to feel guilty. Sometimes I do need him to get me ready for, and into bed. Sometimes he has to finish the things that I started. And sometimes I need to cry, and that's okay with him.
Emily
Cruisin the Dub
Posted in on by
Thursday August 27, 2009. A&W restaurant owners have committed to donate $1 from every delicious Teen Burger sold within a 24 hour period to help the MS Society of Canada end MS.
*Teen Burger - beef, cheese, bacon, lettuce, tomato...
Eat up...and don't forget to order onion rings!
Emily
MS reversed in mice
Posted in on by
Everyday, I scan a particular website for headlines. I check up on news from the world, Canada, sports, entertainment, health, science and local. When my eye rolls over to the health section, all that I am really looking for is information on MS (yes, it's in the health area, and not the science area). I don't dig too deep for my news, but I do find what I am looking for.
Like today, one of the health headlines is, "MS reversed in mice". Here's the article:
MS Reversed in Mice
GO research GO!
Emily
Like today, one of the health headlines is, "MS reversed in mice". Here's the article:
MS Reversed in Mice
GO research GO!
Emily
and take 2000mg of Vitamin D
Posted in on by
I shed a few tears today.
I have been walking around as if everything is ok. I mean, I haven't had a relapse since January 2008, therefore, everything with my disease is dormant. Sure, I'm tired. Yes, I have trouble completing sentences in conversation. And if I browse the racks at a store, I get wobbly.
I have considered these things to just be part of the disease, and nothing that I haven't been dealing with since the beginning.
But do you remember how I have been having trouble with my legs, in particular my left leg?
Well, as I suspected, but obviously didn't prepare myself for...the issue with my leg is spasticity. This threw me for a loop. I expected Dr E to shrug it off or say, "Could be". Instead, I heard the words, "there is medicine for that".
For me, the confirmation of spasticity represents disease progression. What I didn't want to admit could be happening, is happening.
Just because I continue to avoid the more common issues, doesn't mean things aren't happening beneath the surface. It also means that this disease continues to be invisible for me, as my leg on a day to day basis is still loose.
As for the rest of the appointment, it was uneventful, and rushed. As the first appointment of the day, in the new location for the entire Neurology Clinic at HSC, I thought that things might be different. Alas, new digs do not make for new attitudes.
The nurse performed most of the tests (heel-to-toe, how-fast-can-you-walk, walk on your toes, walk on your heels). She even asked what questions I had for the doctor, and she answered them herself. When Dr. E. came in to the room, he had done his homework. Not only did he have the results from the nurses investigation, but he asked me what the outcome of my high platelet count was.
Ultimately, I left there with a follow-up appointment for October 2010. My GP will get a letter, outlining the check-in, and a list of suggested drugs for fatigue and spasticity, should I decide to take them.
To me...it's passing the buck...double billing...but I'm just the patient.
Emily
I have been walking around as if everything is ok. I mean, I haven't had a relapse since January 2008, therefore, everything with my disease is dormant. Sure, I'm tired. Yes, I have trouble completing sentences in conversation. And if I browse the racks at a store, I get wobbly.
I have considered these things to just be part of the disease, and nothing that I haven't been dealing with since the beginning.
But do you remember how I have been having trouble with my legs, in particular my left leg?
Well, as I suspected, but obviously didn't prepare myself for...the issue with my leg is spasticity. This threw me for a loop. I expected Dr E to shrug it off or say, "Could be". Instead, I heard the words, "there is medicine for that".
For me, the confirmation of spasticity represents disease progression. What I didn't want to admit could be happening, is happening.
Just because I continue to avoid the more common issues, doesn't mean things aren't happening beneath the surface. It also means that this disease continues to be invisible for me, as my leg on a day to day basis is still loose.
As for the rest of the appointment, it was uneventful, and rushed. As the first appointment of the day, in the new location for the entire Neurology Clinic at HSC, I thought that things might be different. Alas, new digs do not make for new attitudes.
The nurse performed most of the tests (heel-to-toe, how-fast-can-you-walk, walk on your toes, walk on your heels). She even asked what questions I had for the doctor, and she answered them herself. When Dr. E. came in to the room, he had done his homework. Not only did he have the results from the nurses investigation, but he asked me what the outcome of my high platelet count was.
Ultimately, I left there with a follow-up appointment for October 2010. My GP will get a letter, outlining the check-in, and a list of suggested drugs for fatigue and spasticity, should I decide to take them.
To me...it's passing the buck...double billing...but I'm just the patient.
Emily
3 more sleeps and nausea
Posted in on by
I have my annual check-in with Dr E, my MS neurologist on Monday. This week-end, I will be preparing my list of questions, remembering that it is MY appointment time, and I'm allowed to get all of my questions out.
My first question will be about MS and nausea. On-line, I have found conflicting info on whether the two things can be related. I have no trouble finding people with both MS and nausea, but they too get conflicting answers.
It seems to make sense that they can be related, as MS is all about nerves, and the digestive system is not off limits. No part of the body is off limits to MS.
I can eliminate some potential nausea inducers:
1. My nausea is not connected to vertigo - I'm vertigo free (unless I'm silly and walk in a circle). 2. I'm also not taking any new medications, which could cause nausea.
3. I've been scoped and watched by a gastro doctor - no issues to report.
While out picking up a B-Day present for 3Cent tonight, I intended to buy some ginger to help me with the nausea. But - I forgot. The nausea causes me to eat poorly, and be all-around a bit cranky.
Maybe if I get cranky enough, Jason will run out and get me something.
Emily
My first question will be about MS and nausea. On-line, I have found conflicting info on whether the two things can be related. I have no trouble finding people with both MS and nausea, but they too get conflicting answers.
It seems to make sense that they can be related, as MS is all about nerves, and the digestive system is not off limits. No part of the body is off limits to MS.
I can eliminate some potential nausea inducers:
1. My nausea is not connected to vertigo - I'm vertigo free (unless I'm silly and walk in a circle). 2. I'm also not taking any new medications, which could cause nausea.
3. I've been scoped and watched by a gastro doctor - no issues to report.
While out picking up a B-Day present for 3Cent tonight, I intended to buy some ginger to help me with the nausea. But - I forgot. The nausea causes me to eat poorly, and be all-around a bit cranky.
Maybe if I get cranky enough, Jason will run out and get me something.
Emily
now I get it!
Posted in cognitive, fatigue on by
I'm hanging out on the couch, surfing through MS blogs. I haven't done this is a long time, and I'm finding it quite entertaining (and helpful). How's this for a t-shirt, "I know I don't look sick, but you should see my MRI's". lmao
The thing is - I'm tired. I'm being stubborn, and not going to bed. Currently, I'm reading threads in a neuro forum (which I found via a blog) and I'm focused on one particular topic, "Downsides of Cog Issues".
Today, and yesterday I have had BAD word selection and word finding. Luckily, most of the time, Jason has known what I'm trying to say. But it is so frustrating! Cog(nitive) issues.
So I'm reading, and I'm thinking...yeah, that's me....I've been really tired today and yesterday...I wonder if that is related to my word selection and finding challenges...OF COURSE IT IS...GO TO BED.
Good night.
Emily
The thing is - I'm tired. I'm being stubborn, and not going to bed. Currently, I'm reading threads in a neuro forum (which I found via a blog) and I'm focused on one particular topic, "Downsides of Cog Issues".
Today, and yesterday I have had BAD word selection and word finding. Luckily, most of the time, Jason has known what I'm trying to say. But it is so frustrating! Cog(nitive) issues.
So I'm reading, and I'm thinking...yeah, that's me....I've been really tired today and yesterday...I wonder if that is related to my word selection and finding challenges...OF COURSE IT IS...GO TO BED.
Good night.
Emily
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