Pissed (Pun Intended)

Two steps at a Time coverThis morning, I had an appointment with a urologist.

It’s not often talked about, but a ton of people with MS have bladder problems. I haven’t talked a lot about mine here, only once before. So I hope you’ll pardon me if I talk about them again.

I have a lot of issues as a result of the MS, but one of the most annoying for me, aside from the memory issues, speech problems, lack of energy, intense fatigue, body pain, spasms, tremors, temporary problems with eye sight,  etc, is the bladder problems.

I’ve always had an over active bladder. However, now it’s very active with an added hitch: sometimes, even though I know I have to urinate, I am unable to. Other times when I feel like I don’t have to go, I have to. As you can imagine, this leads to a lot of discomfort and some difficulties.

I was told by my MS doctor that a personal catheter had to be used. My MS nurse told me that there was medication I could take for it. Though I’m loathe to take another medication on top of the ones I already take, by this point, I was willing.

I can’t remember the last time I slept through a whole night. Sometimes when I get up in the middle of the night, urinating can take up to half an hour. I’ll go once and then have to go again soon after, so I just stay on the toilet. This leads to a disrupted sleep pattern and brain and body fatigue the next day. I take Dex4 glucose tablets for that.

Thus, I was happy to go to my appointment with the urologist. I figured I would get my results from the sonogram and be prescribed a treatment and that would be that. However, that wasn’t how things went down.

The urologist was super awesome and a pleasure to speak with. He informed me of a few things:

– People with Cerebral Palsy have an over active bladder. I never knew this, but it would explain why I had to pee so much more than the average person. Why did I never know this?

– The Cerebral Palsy has it’s own bladder issues, but so does the Multiple Sclerosis. So in effect, the MS is making the bladder issues worse.

– The sonogram was done incorrectly. The start results weren’t recorded so it gave the urologist no baseline. On top of that, it’s really only indicative of having a really full bladder.

– Which means that the sonogram is, essentially, useless.

I was pissed, really quite upset. It wasn’t the urologist’s fault, but it was the most uncomfortable procedures I’ve been through. The MRI’s are mildly claustrophobic, I didn’t feel the Lumbar Puncture (otherwise known as a Spinal Tap); thank goodness for Novocaine, but the sonogram? Torture. That and highly embarrassing when I pissed myself.

To find out that the whole ordeal could have been avoided if I had just been referred to a urologist? Maddening. However, medical practices are getting better and my urologist is awesome.

I have two more appointments with him. The fist is the actual testing to determine which kind of treatment will work for me. It involves a catheter. I’ve never had one done and am not looking forward to it, but if it’s part of the road that will help me get better, I’ll welcome it. Then I have the follow up appointment when I find out what treatment I can pursue.

The only piece of bad news? I have to wait until September. That means I’ll have my one year follow up appointment with the MS Clinic and two appointments with the urologist to look forward to in one month. You can’t say I don’t know how to have fun. I just wish I didn’t have to wait so long for the appointments with the urologist. It means having to deal with bladder issues for longer than I was hoping to.

There is one good side to all this: It’s another two steps forward on reclaiming my body and living in as healthy a way as possible.

And that is something to be truly thankful for.

Posted in Bladder problems, Urologist | 1 Comment

Pushing Past the Boundary

Two steps at a Time coverI took another step on my path to wellness this week.

On Tuesday, I met with a personal fitness instructor. She designed a work out that I could do that kept my balance issues in mind. She took me through the exercises and I was so thrilled to be doing them. I was exercising, something I’ve wanted to be able to do for months! Better yet, she designed the exercises so I could do them from the comfort of my own home.

The exercises are designed to strengthen my more, my balance, my legs and arms. I was surprised by how tired I was just going through what I thought were fairly simple exercises. I used to do a workout that included 100 push ups, 100 ab crunches, 100 sit ups and running for a half hour. I couldn’t believe that after an hour of going through five simple exercises left me exhausted.

My instructor asked me what my goals were. I could think of only two: next year for the MS Walk, I want to be able to walk five kilometres. I also want to walk heel to toe across the doctors office. Walking heel to toe may sound simple but it’s something I can’t do. At each of my appointments at the MS Clinic, I’m asked to try to walk heel to toe. I can’t manage one step. My balance is no good and I can’t stay upright. It sounds like such a simple thing to do, but to me it’s like climbing a mountain.

I noticed then that my left and right sides are different. The left side is where the MS hit and is strongest, the right side is where my CP is more evident. Each side presented different challenges in the exercises.

On Wednesday evening, I took myself through my new exercise routine. I manage it but it was had to do. It’s something to have an instructor take you through it but it’s different doing it on your own. I managed quite well and was very proud of myself.

That night in bed, I had a full body spasm.

It started, as most of the spasms do, in my legs. They throbbed with an intensity I haven’t felt before. The spasm was brief but it was like my legs were on fire. As they continued to burn, the spasm moved up to my back and arms.

My body was numb, it was on fire, it was like it was being jabbed with needles. As the spasm moved through me, I just lay there in my bed and waited for it to end, to stop, to cease. I just breathed and waited and hoped.

Eventually the spasm stopped after about twenty minutes and I slid into a restless sleep. Yesterday,  morning when I woke, I hurt all over. It hurt to walk, to move, to dress. Showering was a slow effort. The spasms stopped, but my legs were like two stone pillars. The muscles in the legs didn’t release or go down until last night.

I don’t know if it was stress, my body just doing what it does or the workout that caused my full body spasm. I have no idea. What I do know is that the workout routine is all about making my body stronger, about pushing past some of the boundaries and doing what I need to despite the pain that my body is in.

Tonight, I took myself through my workout routine again.

Every step I take is a journey. There will be good days and bad ones but I know that I’m on the right path. I can’t let pain stop me. It may slow me down, I may be momentarily afraid but fear and pain pass eventually.

All I have to do is push past the pain barrier and live one moment and one step at a time. That’s all I can do; and that’s enough.

Posted in Balance, Muscles, Spasms | Leave a comment

Telling Stories in a Different Way

Two steps at a Time coverThis is a guest post that I wrote for when Talking to the Sky was released. Out of the three of them, it took me the longest to write.

It was posted at Alexandra Brown’s blog and I had the honour of being her first guest post. You can read the original post here:

http://www.alexandrabrown.co.uk/2014/03/jamieson/

 

When I fell ill last year, I was unable to do anything. I wasn’t allowed to read, to write, to watch television. Not that I would have been able to do that anyway. All I could do was sleep. Being unable to write or read nearly killed me. I lived for words in all their different forms.

After two weeks I was able to read again. The first book I read was Cupcakes at Carrington’s by Alexandra Brown. I wanted something light and fluffy to take me away. What I got instead was so much more than that.

Georgie has to deal with a lot more than your traditional chick lit heroine, but what touched me most were Georgie’s losing her mother from MS related illness. At the time, I read as an observer as my brother has MS. I instantly connected with Georgie’s pain and hoped she would be able to let it go.

Alexandra wrote about a topic that isn’t normally covered in chick lit. MS is certainly not  light and fluffy subject matter. However I wish that wasn’t so. The women in chick lit novels are still people and as such, they deal with all kinds of issues. They’re supposed to be real women living normal lives and not everything in life is fluffy and glorious.

Cupcakes at Carrington’s handles the topic of MS so beautifully that it touched me as a reader and as someone who had a brother with the disease. When they finally figured out what was wrong with me and diagnosed me with relapse and remitting Multiple Sclerosis, I read Cupcakes at Carrington’s again and then a third time, this time with knowledge of what I had.

Alexandra has written a series that goes beyond chick lit. It is within the same genre but by telling her stories in a different way, she’s given chick lit a face lift, has given it heart. She’s given it soul.

I was thrilled to be reading again, but there was a block with my writing. I struggled for weeks with the brain fog, the numbness in my head due to the MS. The stories were still there, I just had to find a different way to tell them.

I had once seen a documentary about Marina Abramovic’s performance piece The Artist is Present. In the piece, she sits as herself and says nothing. All she does do is be completely present for every person that sits across from her.

At first, I wondered how this could be considered art but then grew to see how each person was moved by Marina’s presence and she by them. All this was done without saying a word.

All I wanted to do was write. I could only write a few words at first and could stitch those words together into a poem. However, if I was going to write poems, I wanted to do it a bit differently.

You see, first and foremost, I’m a story teller. I tell tales, spin yarns, create myths. For that, there can’t be just my voice. I find poems are a deeply private piece of that writers soul. They are reaching into themselves and pulling up something tangible.

There is a piece of me in everything I write. I’m sure many writers can agree with me on this. There are characters that I’ve created that look like me, some that have my traits, my sense of humour. I usually tell someone that the best way to get to know me is to read something I’ve written. I’m all through out it my stories.

Poems are more personal, however, like a memoir. The writer is laying bare a moment in time, something that touched them. I wanted to tell stories with my poems. The poems contained in Talking to the Sky are very personal and they are an exploration of strength as I went on a journey to find myself again. However, they aren’t just my voice. Like any good story, there are other characters.

I ended up writing down random conversations I had with people or been part of. Other poems expressed conversations I’d wanted to have and things that remained left unsaid. Some were based in fancy and flight. All the poems had one thing in common: they all involved talking in some way.

By writing the poems in this way, I was able to look deeper than just a random moment, I could look at myself, at what I needed to learn. I’m still learning about myself with every poem and every word I put to paper. I’m still writing my own story and I have no idea how it will end but that’s half the fun isn’t it? I can’t wait to see what the next chapter will bring.

Posted in Talking to the Sky | Leave a comment

Writing Past the Wall

Two steps at a Time coverThe following is a guest post I wrote for author Marie Bilodeau’s blog. She wanted to know about my experiences with writers blog in relation to my Multiple Sclerosis. She’s been kind enough to let me repost it but you can see the original post here:

http://mariebilodeau.blogspot.ca/2014/02/guest-post-writing-past-wall.html

 

I’ve never had a problem with writer’s block.

Sure, I had the odd time when a story or a character was being stubborn, but I’ve always been able to write. I’ve written over tons of books and I was always writing something. There was always  a story to tell, always words pouring out.

In January 2013, that all changed. I got sick with what was eventually diagnosed as Multiple Sclerosis. I didn’t write anything for almost a month. When I started to get better, I found I couldn’t write.

I would sit at the computer and stare at it. When I put my fingers to the keyboard, I couldn’t get my fingers to hit the right keys. I was stuck. It was as if there was a wall in front of me that I couldn’t see through.

It was the biggest case of writers block that I’d ever experienced. There were all these words inside my head, all these stories waiting to be told. No mater how hard I tried to force them out, they wouldn’t come and I couldn’t get past the wall that was my head.

I’m a writer. Writing is what I do, the air I breathe, the elixir of life. I needed to find a way to write again, I had to.

I decided to try my hand at poetry. I thought that if artists could do performance art that was silent, perhaps I could write something that would use very few words and still hold meaning for me.

I could only type a handful of words at a time – they were all that was allowed past the wall. I figured that I could string enough of them together to make a poem. I could tell stories again; maybe not the types of stories I used to tell, but I would be writing something. That was enough.

It was slow going at first. The first poem I wrote took me a few days to write, but I got it written. I can’t describe what it was like to write that first poem except that it gave me a joy I had never experienced. I was writing again. It didn’t matter that it was only a handful of words at a time. I was writing and that was enough.

It took a while, but as I continued writing my poems, my typing became more precise. I was able to write whole poems instead of a handful of words. They may have taken hours instead of minutes to write, but the words meant more to me; though there were few of them compared to what I normally wrote, they had more depth.

The poems were made from the pieces of the wall, pebbles and stones holding consonants and vowels. As I continued to write poetry, the stones were all used up and the wall came down. I had found a way past the wall. I’ve never been able to regain the speed I used to write at, but the writer’s block had lifted, the wall was gone.

By April, I was able to start working on the novel that I had been working on before the MS hit. I continued with another novel and am now working on another. However, more and more, I’m turning to writing poetry.

They gave me a voice when I didn’t have one and for that I will be eternally grateful.

Posted in Talking to the Sky | Leave a comment

Memories on the Wires

Two steps at a Time coverThe following is a guest post I wrote for author Lauriee Stewarts blog.

I wrote about social media and how it’s helped preserve my memory

to promote Talking to the Sky when it was released. You can read the original post here:

http://morrighanfilms.wordpress.com/2014/02/19/guest-blogger-jamieson-wolf/

 

I was out at dinner this evening and a woman saw me taking a picture of my dinner with my smart phone.

“Oh, are you a food blogger?”

“No, I’m a writer. I’m just putting the picture on Facebook.”

A woman across the table leaned forward. “Why are you putting a picture of your dinner on Facebook?”

“So I don’t forget anything.”

That’s usually the answer I give to why I use social media so much. Social media serves a purpose: it helps you connect, helps writers and artist promote ourselves (yay us!) and it helps us stay in touch with our loved ones.

I use it for one other important purpose: I use it to remember.

I use Facebook a ridiculous amount; I’m also hooked up to Twitter, Tumblr, WordPress and others. I post poems, articles, novels, short stories. I post pictures of my life from that random moment, something I’m able to capture.

All of it is lived in the moment.

I have trouble remembering things. My thoughts sometimes get hard to hold on to, as if they are made from smoke. I’ve forgotten a lot of what I used to know or what I’ve just taken in.

It used to be I could recall whole plots of books I’ve read and loved. Now I can’t remember what the last book I read was. When I want to write a book review, I usually have to read the book a second or third time.

What I put out on social media are like pebbles, left along the roadside. Sometimes the pebbles go amiss: they get moved by the wind, scuffed by someone’s boots, carried in the beak of a bird. Some of the pebbles go missing.

Social media is a way for me to gather all of those stones somewhere, so I can find them again.  I think of each post, poem or word like a memory, preserved in electricity. They are like snapshots of a moment.

I was broken into earlier this year. One of the things that was taken was my laptop…and the memory key I left in it that day that contained all of my writing from my whole literary career. All my novels, my manuscripts, everything I’ve ever written.

I’ve since started backing up everything I write. That was a lesson I learned the hard way. When I went to the internet to gather the poems for Talking to the Sky, I was very thankful that I had put every poem I wrote last year up on the internet. They were all there, waiting for me.

The problem was that I didn’t remember writing a lot of them. When I put Talking to the Sky together, I was reading the majority of the poems for the first time; and I was the one that wrote them. I had forgotten them completely.

Never have I been so thankful to social media and the lives we live within the wires. It held on to piece of my voice and gave it back to me when I needed it.  For that, I will always be grateful. I was able to gather these snapshots and now I give them to you.

Leave a comment

Sorry, Cher. It was nothing personal…

Two steps at a timeI was supposed to go and see Cher and Cyndi Lauper in concert last night. I didn’t go and sold my ticket. Instead, I got the rest I needed to take part in The MS Walk.

When I purchased my ticket, I didn’t know about The MS Walk. When I found out about it from my friend Jayne, I immediately wanted to do it. So I signed up as a team captain, made a pledge and started a journey.

I thought I would be walking alone. I just wanted to see if I could do it. I hoped to raise the minimum amount of pledges ($125) and barely be able to walk the shortest walk of 3k. That didn’t matter to me, I just wanted to see if I could do it.  The thought of walking that far terrified me.

At that time, I had only been walking without my cane for less than a month. I really didn’t1k know if I could walk for three kilometres. I didn’t know how far that was, had no way to measure it. I started having a fear of the unknown: Whether my body would choose while I was walking to be uncooperative, of the fatigue would kick in.

In the end, I knew I would do the Walk no matter what happened and that whatever would come would come. Instead of giving into fear, I did what I could to get ready. I started taking twice daily walks with people at work. We would walk around a street or two at first, but then we would start walking around whole blocks, the walks taking up the whole fifteen minutes.

For the past two  months, I’ve been walking whenever possible. I’ve been pushing myself2k little by little to walk more. Last week, I even took the stairs instead of the elevator at work. That would have been unthinkable last year. Heck, it was only a few months ago that I had my hellish experience going down all those stairs in the fire drill.

I had even started adding up the amount of distance walked to and from work and on our break time works. The highest was 6.5k, but that was all though out a day.  I didn’t know if I could do 3k at once.

As the Walk approached, It was pointed out to me that the Cher concert was the night before the Walk. I knew there was no way that I could do both. I talk a lot on here about knowing my boundaries, my bodies limits, what it can do and what it can handle.

The concert would go until 2AM in the morning and then I had to get home. That would 3k2leave me physically unable to do the Walk the next day. That I had to make a decision.  I decided to sell my Cher ticket; The MS Walk meant more to me.

I had a whole team of friends, family and co-workers that had signed up to be part of my team called The Wolf Pack. I had come so far in getting better; and I really wanted to prove something to myself.

I’m sure Cher and Cyndi were fabulous, but doing the MS Walk meant so much more to me. There’s just something about the experience that filled me with such pride.  I wanted to prove to myself that I was strong enough to do it.

I have a few mantras that I repeat a lot lately, to myself and others. One of them is “You are stronger than you think you are.” I know I have certainly proved this to myself already. Despite the trials of last year, I’ve survived them and come through them a better person.

The first kilometre went; I couldn’t believe I had actually reached it. The second kilometre seemed to go on forever. I had to take a short breather, just a minute or two, then kept on going. The third kilometre was like the first. It seemed to end in no time. As I neared the end, with the finish line in sight, I was filled with a joy so bright, I had experienced it before.

I passed the finish line in 59 minutes and 37 seconds and together The Wolf Pack had raised $595 to help end MS. I did something I never though I could do and came through it in one piece with people who are my family, friends, co-workers. We all shared a moment that we will always remember.

Being able to do the MS Walk this year did prove that I was stronger than I thought I was. It filed me with more light than any concert from Cher would have (sorry Cher!) and that is awesome.

Posted in Cher, Cyndi Lauper, The MS Walk, Walking | Leave a comment

You Can Dance If You Want To

Two steps at a Time cover On Friday, I went out for the first time in what felt like a lifetime. In a way, it was as my life is now divided into BMS (Before MS) and AMS (After MS).

A group of us was going out after work and I actually wanted to go. We went to Le Petit Chicago, a Latin dance bar. We got there early and I even treated myself to a fancy Cosmo. I had no intentions of dancing however.

The Multiple Sclerosis and Cerebral Palsy play havoc with my body. Often, my movements aren’t my own. I always waned to take dance lessons as a child, but couldn’t due to the CP. I’ve gone to clubs to dance, but you don’t need to have any rhythm, you just have to move to the music.

I went to Le Petit Chicago with Julie and Alexandra. When they told me I would have to dance too, I shook my head. “I can’t dance.”

“Of course you can!” Julie said.

I shook my head. I didn’t know what my body would do on the dance floor, whether my movements would be my own or not, or whether my body would take over and do what it wanted to anyway.

Really, I was afraid I wouldn’t be able to do it. I was afraid to try.

Julie and Alexandra wouldn’t take no for an answer and dragged me up on to the dance 1620905_10153993591590702_400105831013585374_nfloor. They showed me the basic steps for a salsa. It seemed simple enough. I thought I could do it.

Alexandra led for the first little bit and I’m chagrined to say that I had a blast. Though my feet didn’t always move in the direction they were supposed to and my balance was off, but that didn’t matter.

What mattered was I was with people who loved me and I was conquering something. I was dancing even though I thought I couldn’t, even though I thought the art of dancing was lost to me. Sure, I wasn’t as graceful as Julie or Alexandra or anyone else in the bar, but I was dancing and grinning the entire time.

I ended up dancing for most of the night. I paid for it the next day with spasming muscles and soreness, but that didn’t matter. Every bit of pain was a reminder of what I’d accomplished and the fear I was able to banish.

I don’t know if Julie or Alex will ever know the full depth of the gift they gave me. They helped me see that I can do anything I want to do, no matter what the boundaries of my body are. They helped me see that anything was possible, no matter how far fetched.

I am eternally thankful for them and grateful they wouldn’t take no for an answer.

Posted in alcohol, Balance, Dancing | Leave a comment

The Resulting Release

Two steps at a Time coverI had my MRI results appointment the other week. I’ve tried to think of how to write this post but have decided to simply write it as it happened. It’ll be easier that way.

When we went in to the doctors office and sat down, he pulled up my new MRI. What I noticed first was that my lesions had shrunk and they were no longer bright. In my previous MRI, they were like bright white planets in a sea of grey. Now they were greyed out themselves and had shrunk considerably.

I thought the doctor would have good news and talk about how the lesions had grown smaller. The first thing he said was: “There are three new lesions. We have to put you on level two medication.”

This was a shock to the system as I’ve been on Copaxone for less than a year. I should have had a follow up MRI around December, but they didn’t schedule one. The new lesions could have formed between the time from the old MRI and when I started taking my medication.

The new medication they wanted to put me on was an oral pill as opposed to an injection. It would cause depression, anxiety, neausea, dizziness, vomiting, etc. Pretty much all the symptoms I’d had when the MS first hit.

My immediate response was a huge no. That and feeling as if I was being hit with a truck. I was shocked that they wanted to put me on new medication right away. I’ve worked so hard to leave how I was in the past and this felt like welcoming it back again.

However, the ups and downs weren’t done yet. It turned out that I wasn’t eligible for the new medication as I haven’t had a relapse. I had a lapse in January but have yet to have a relapse. Though I have been diagnosed with Relapse and Remitting Multiple Sclerosis, since I’ve only had the one lapse, I actually have Clinically Isolated Syndrome. Thus, I am not eligible to take the new medication.

The doctor and MS nurse then said I could obtain the new medication if I took part in a study where I would be given one of three doses, depending which group they put me on. It would be half the normal dose, the normal dose or a larger than normal one. I would have to go to the hospital to be checked over several times a week to see how the new medication was taking effect.

Like most people, I hate hospitals. However, the situation being what it is, I’ve come to accept that it’s just part of my life now. However, the less time spent in hospitals the better. I was terrified at spending more time in a place that I didn’t like, of being poked and prodded in the name of science.

My mother and I went into the waiting room to talk about what I should do. She said my gut and my intuition is usually spot on. What did I want to do? My response was still no. I had worked so hard to get over those symptoms. I still live with some of them, but the depression was gone, the dizziness, the neasuea. I didn’t want those back again. I know that eventually I would have to go on stronger medication, but this didn’t feel like the right time.

The doctor and nurse came into the waiting room with more news: the study wasn’t an option for me. It was only for people who had full on Relapse and Remitting MS, not CIS. They said they would have to wait for me to have a relapse in order to get me on the stronger medication and I was to let them know if this happened. I said “It sounds as if you’re just waiting for me to have a relapse.” The nurse responded that, at this time, that was all they could do.

I was still in shell shock mode. A hospital is a highly emotional place and mine were at the breaking point. We left and walked out into another part of the hospital and my mother could see I was in rough shape. I had been trying hard not to lose it, not to break down and cry while the doctor delivered his blows.

So she did something that I am incredibly grateful for: she pulled me into a hug and let me cry on her shoulder. I let it all out while my mother held me, whispered that it was okay to cry. We both felt as if we were hit by a truck and dragged over the coals.

It was the first time I’ve cried a cry of release. Normally, I only cry when books, movies or people stir up my emotions. This time it was a torrent of tears not in anger or frustration, but in release, of letting go, of being able to breathe once again.

What the doctor and the nurse should have done were a few things: comment on the fact that the lesions were healing, that they had shrunk and greyed out. They should have checked to see if I was eligible to take the new medication or for the study before I arrived for the appointment. They didn’t. They turned what should have been a simple update appointment into an emotional roller coaster.

Still, I’m focusing on the positive: my lesions have shrunk and are healing. I’m so much better than I was before what with a new diet, Reiki, balance. This is my life, and I will live it to the fullest any way I can.

Posted in diet, Doctors, MRI's, results | Leave a comment

Sonograms, MRI’s and Results Oh My!

Two steps at a Time coverI’ve had a slew of medical appointments as of late.

I had my follow up MRI on March 23rd. Even though I knew what was coming, what to expect, it was still frightening. Even though I was prepared, I was still afraid.

I was able to pretend that all the noise was music by Daft Punk, that I was in the movie Tron; but I knew this wasn’t really the case. I knew where I was the whole time. They put the neck camera on me and part way through, they injected dye into my body to get a deeper look at where the MS was.

At one point though, I fell asleep. I was actually woken up when the thumping sound around me changed pitch. It amazed me that I was able to fall asleep with all that noise, but stranger things have happened. I’d like to think that it was all the good energy that everyone was sending my way that kept me calm enough to find sleep.

On Monday, yesterday, I had a sonogram done. Now, I’ve read a lot of books about MS and they mention bladder problems but I’ve never written about my own. Well, all that changes now, I guess.

For months, I’ve been having bladder problems. There are times when I feel like I have to go, but can’t. There are times where I have to go every hour during the night. There are even times where I haven’t been able to urinate for a full day, no matter how bad it feels like I have to go. At first, I thought it was a bladder infection but then started reading about the bladder problems that people with Multiple Sclerosis experience. It was another on the long list of symptoms.

I’ve just learned to live with it because the thought of taking another medication didn’t appeal to me. I already have to give myself a daily injection and one pill for my spasms. That med causes constipation, so I take something for that. I didn’t want to take a pill so I could urinate as well. At my six month follow up though, my doctor prescribed a sonogram for me to look at my bladder.

It was the most uncomfortable I’ve been in any of the medical procedures so far, except for the spinal tap. That wasn’t pleasant, but at least it was over quickly. This was agony. I had to drink four glasses of water an hour before the appointment and, wouldn’t you know it, after months of holding everything in when I need to pee, my bladder finally decides to cooperate.

I was incredibly, terribly uncomfortable and I was filled with an urgent need to pee-and for the first time in a long time, I knew that I would have no problems holding back. I don’t know how women go through a sonogram with a baby pressing on their bladder the entire time. It can only be excruciating. When I was finally able to pee, I got it everywhere.

The fun wasn’t over yet. Once I showered and changed and headed into work, I got a call from the MS clinic. They got the results back from my MRI and the doctor wanted to speak to me. The appointment is next Tuesday.

I know that there is every likelihood I’ll be told that I’ve developed more lesions.  In fact, that’s almost a certainty; whether they are in the brain or in different parts of my body makes no difference. Unlike last time, however, I won’t be afraid, I won’t let it crush me.

I’ve done everything I can think of to do for my health: I’ve changed my diet, I’ve quit smoking, I’ve gotten back into Reiki and engage in a nightly Reiki self treatment. I’m studying Qigong, I’m actually living a healthy lifestyle. I’m a stronger person than I was, despite my boundaries and symptoms. There is a small hope that everything I’ve done, every step of healing I’ve taken, has resulted in a lessening of lesions or that they are healing themselves; that would be dreaming in technicolour, but it’s a small hope nonetheless.

All I can do after the results, whatever they may be, is keep on doing it. No matter what the results are, all I have to do is remember where I was and know that I’m not the same person anymore. I know myself now and come what may, I’ll get through it.

Tough times pass; tough people don’t. Thankfully I’m one tough cookie.

Posted in Doctors, MRI's, results, sonograms | 1 Comment

Letting Go

Two steps at a Time coverI’ve come to realise that I’ve been living in fear.

When the MS hit in January of 2013, it took everything from me: my mobility, my independence,  my freedom. I was a prisoner inside of my own body. I fought to get better, to regain control over my body.

It took me longer to find myself again; but the thing was, when I found myself, he wasn’t someone I recognized completely. It was still me, but this person was different. He found joy in doing the smallest things on his own: taking out the garbage, cleaning out the cat litter, doing the dishes, being able to do laundry; everything was a small victory.

He was also more thankful, for everything. For his friends, his family, the people who loved him and touched his life. As I began to know myself again, I realized how different I was. My perspective had changed completely. I am a different person than I was and so much the better for it.

However, I’ve been struggling. The symptoms of my MS come and go on a moment to moment, hour to hour, day to day basis. There’s the brain fog, numbness, mobility, spasms, tremors, speech problems and my memory is shot; but I’m very good at ignoring my own body and what it’s trying to tell me.

I live with fatigue on a daily basis and I ignore this one most of all. I fill up my time with friends, with classes, with writing. I’m almost writing. I watch television rarely now and movies even less. I used to read three to five books a week. Now I can’t even manage one.

I was lucky. When I was diagnosed, I was told I had the CIS version of MS. CIS stands for Clinically Isolated Syndrome. They got me on my medication before I had a relapse. Even though I have relapse and remitting MS, I am lucky. I’ve only had the one episode.

It’s the fear of having a relapse that drives me to exhaustion. It always lives in the back of my head that tomorrow could be the day that I have a relapse and I have to fill up every moment, every second, before MS takes everything away again.

January of 2013 was the lowest point in my life and I am so afraid of having that happen again-but by driving myself to exhaustion, it’s far more likely that I’ll have a relapse. I’d be doing it to myself.

Last week, I was busy every night of the week. I had no energy left during the weekend.

I was done, finished and the week hadn’t even started yet. I could feel the fatigue, almost taste it and I had something going on every night this week. So even though I didn’t want to do it, I rescheduled a lot of it.

The problem with that for me is twofold: I don’t like letting people down and I want to go out there and live, do something. I’ve come to realize, however, that even reading a book and having a cup of tea is living. Watching television, playing a computer game or taking time for me is living. I had gone from finding joy in the smallest and simplest of actions to believing that if I wasn’t writing or doing something I considered worthwhile, I wasn’t really living.

I just took a look back through the past few posts on this blog and quite a few of them have been about needing to find balance, taking joy in the small things, remembering to relax and indulge. I haven’t been listening to myself.

So enough. I’ve finally pissed myself off. I’m going to enjoy life and that includes taking time for myself and listening to my body when it’s trying to tell me something instead of ignoring it.

I’m going to live. I am truly going to enjoy every moment and I’m letting the fear go. I’ve had it for far too long and it wasn’t a good colour on me anyway.

Posted in Brain Fog, Fatique, joy, Muscles, Spasms, Tremors | 1 Comment