When did that Happen?

I am sitting here, realizing that it has been 4 days since I had vertigo.
In fact, my head feels clear and securely attached to my neck.  I am amazed at how taken for granted this feeling can become, especially when it has been months since I was free of lightheadness, vertigo and buzzing.
I am cautious in saying this, constantly aware that the superstitious part of my identity is afraid to tempt fate.
I want to say that I may even feel relatively "well."  There are some minor aches and pains, but right now I am not overcome with the energy draining, full body fatigue that has been a staple in my existance.  I think that this means the medication is working. I have been on it for three weeks now and other than the very dry mouth (a common side effect) it has been a fairly painless experience.  I am not on the full dose yet, as my doctor would like to see me ease onto it (I guess because it affects your brain chemistry) and so I have to up the dose a little at a time. Today makes me optimistic that we may be on the right track and possibly my life as a human pin cushion will be coming to an end soon!
I will keep you posted.

Asking for Yelp!

 

 

 

 

 

source

 

I have been writing blogs for a couple of years now.  When I have been asked why I blog, my response has always been "it is a form of therapy and a way to normalize my experience."  What I have not verbalized is that the blog has been a way to discuss how I feel or convey messages to people I love and care about.
In blogging about this recent journey on a road to finding a diagnosis, I truly believed I was open and honest.  At times I was revealing some intimate details about my physical condition.  Sometimes I was pondering a thought to an elusive virtual community. 
But in reality I was keeping my world at arms length.
Remaining anonymous to my own life.
There is an ease to conveying your feelings from an empty dining room table.
When you do not have to vocalize your emotions to another face that may react to what you have to say, you can say anything.
My ability to be "open" about my health was conditional on doing it from behind a computer screen.  In reality "open", only meant sharing the tip of the iceberg, the remaining 90% of what I have been dealing with has been buried far beneath the surface, untouchable.
When I met with the doctor last week, I was forced out of the comfort of my virtual world.  I could not hide behind a hectic school schedule.  My children were not going to provide me with a distraction.  I had to face the reality that there was something very real to talk about.  Last Tuesday is where the unravelling began.
This past week has been a roller coaster of emotion. I have had to laugh.  I've also had to cry and cry and cry.
I have had to talk about how I have been feeling, because it has become impossible to ignore that I have been feeling. 
Admittedly, stoicism is an inherited trait.  Even in my openness I am recognizing how out of touch I really am.
Today I made a small change and I did something out of character.  I did something that required me to be vulnerable (a position that I usually run from).  I did something that demanded strength and trust. I asked for yelp help.
I have always advocated that people recognize their limits and honour their emotions.  I have challenged family, friends and clients to see a request for help as a sign of strength.  The recognition that you know your limits and that you are acknowledging and fulfilling your needs.  For the past year I have been gauging strength on my ability to push through, buck up and carry on.  There is a need for that mentality but there is also a cost.  I am not sure that I can continue my journey being dishonest with myself, family and friends.  I am feeling something, many things and it hurts.
Right now I need to be resilient and that means building my supports to get me through.  It means I may need to get comfortable with asking for help.  One day at a time.
"The life of man is like a game with dice; if you don’t get the throw you want, you must show your skill in making the best of the throw you get." Terence

How to Go Forward

There won't be any fancy pictures or play on words today.  It has been an energy draining day, and when you don't have much energy to begin with, you must forgive me if I cannot bring myself to use more than I need.
I would like to give the facts but honestly I am not sure how much more I know.  When we walked into the doctor's office he said "well I have the results of the MRI and I am not sure that we are any further ahead than we were before." Let me explain what he meant by that. There were two sites on the scan where there was non-specific change in the white matter of the brain (same as before) but they had not changed and there were no new sites.  The doctor felt that if it was MS there would have been some change.  I asked how much change was possible in only three months (the timing of the last MRI) and he did not know but felt there should have been some.  I will have another MRI in a year to see if anything has changed.
We discussed Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) admittedly I was the one to bring it to the table but the doctor thought it could be a possibility.  It is a diagnosis through elimination, so once every option is exhausted CFIDS may be the diagnosis.
There were tears today.  When I inquired about MS further, Landy did respond by asking if I wanted it to be MS (I understand his response comes from a place of love and concern) and all I could say was that I did not want this to be dismissed just because it was not MS. I want to be seen as legitimate and valid because I do not feel "well" and I am trying to function as "well."  There is no way of externalizing what I am experiencing but at times I wish I could.  When people cannot see the illness it can be very easy to be dimissive of the impact it is having at any given moment.  I want answers because not knowing really sucks.
But enough of my soap box.  I most likely do not have MS and I will be able to be more definitive in a year.  We are doing more testing for viral causes and the doctor is treating me for CFIDS with a low dosage of tetracyclic medication that has been proven to help in CFIDS cases.
That is how much I know for now.  I wish it was more but we know more today than yesterday.  Thanks for the love and support.  It does help, truly.

Infuriated in Purgatory

Since my MRI last Monday, I have felt lost in a state of purgatory.  Not in the religious sense of the word but rather the sense of suffering temporarily.  The past year has been teeming with doctor's appointments, specialist insights and testing that was neither comfortable or comforting.  And now here I sit on the cusp of breaching the unknown, terrified for the answers that only two months ago seemed imperative to my journey.
I am stuck in the understanding that regardless of the diagnosis there will be impact, I will be affected.  I try to imagine my reaction regardless of the diagnostic results, but I am aware of my inability to truly appreciate the profoundness of the moment until I am in it.
I must pause here.
Have I ever relayed the story told to me by a young widower? I think I should:

While the young man sat vigil over his wife as she lay dying, he tried to imagine what life would be like without her.  He believed that her illness had given him some insight into losing her.  In the moment of her death he recognized how incomprehensible death was and only by living the experience of being without her would he ever truly understand it.  His message to me: we cannot imagine what we have not lived.

So I am in purgatory, left to wait until Tuesday, when who I am today will be decentred and reimagined due to a chronic illness or a psychiatric one.

You may be wondering, why infuriated?  Perhaps that is too strong of a word, 15 minutes has passed since I began this blog (I am trying to be mindful).  Now I feel more heartbroken in purgatory.  I would not normally expose a conversation that I have had, but I feel like it illustrates how easily we become invisible and even with good intention we can hurt.
I had someone close to me ask how I was doing and if I had received my results yet.  I told them that I was okay but feeling sick in the waiting.  In response they told me that they knew everything was going to be fine.  Feeling exposed and vulnerable, I asked what fine meant to them.  They told me that they knew that I would not have MS and that all of this would go away soon so I could just be.  I recognize that the intention was to put me at ease but unfortunately I left this message feeling invalid.  The advice minimized the past year of experience with my health or lack of it.  In an accusatory fashion it pointed at me to take responsibility for my "unwellness".  It felt like the crest of a slippery slope almost saying that I was creating my illness and it was all in my head (ironic I know).  That is the hurt.  The medical profession can be cold and disconnected, people can be presumptuous and pass judgment and in response the person shrinks into vulnerability and becomes invisible.
I am vulnerable right now and sensitive.  I understand that people in my life are hoping and praying for the best possible outcome.  If I could take the opportunity to teach people what I need I would tell them that nonjudgmental, quiet companionship helps.  Walk with me, not for me.  Do not take the lead.  If you care, just be with me and the rest is within me to handle.

A Good Question

Have you ever been in a room full of people, when the question that was on your mind is expressed by someone else in the room, only to make you feel like you should have asked?  Lately, this is a common experience for me.  Probably because I am so busy trying to orient myself in the room and then distinguish what is being said, that by the time I form a question, someone else has asked. 
There is a reason that I started this blog with a question (aside from playing on the title) and not just any question.
I recently ran into someone from grade school and decided to become reacquainted.  We shared email information and after sending him an email that included a signature with one of my blogs as the "tagline" (thanks for that idea Stephanie) he asked about this blog.  He had a question that I think anyone that reads this blog may be wondering, so I decided to take the opportunity to answer it here.  Although I cannot remember the question verbatim, essentially he asked if I wanted this undiagnosed condition to be MS?  I understood how this blog may lead people to believe that is what I want.  So here is the answer that I gave him following his insightful question:
When a doctor first conveyed that my medical history suggested a possible MS diagnosis, I was relieved.  The relief was not to have MS per say but rather to be taken seriously.  For years, I have felt like I was going crazy, struggling with not feeling well but having tests coming back without results.  When my "symptoms" changed I did not want to go to the doctor because I was terrified of being judged as a hypochondriac or seen as wasting my doctor's time and yet this time he thought it could be something.  Once the feeling of relief passed and I thought about the enormity of a neurologically degenerative disease, I began to panic.  I like my brain the way it is and I still have a lot I would like to do with it.   Panic was followed with denial, believing that this would turn out like everything else in my medical history as just a scare, a benign test or a medical anomaly.
Then I was hit with realism: this is something.
So my answer, I want my health.  If I cannot have that then I just want answers.  I may talk a great deal about MS and that is because I have been pointed in that direction medically.  I am trying to be as prepared and educated as I can be.  I truly believe in proactive versus a reactive response.  Lastly, this experience has its own lessons for me to appreciate and learn from regardless of the end diagnosis.  I plan on reflecting on what this has meant to me and taking it forward in my career.  I consider myself lucky to have the opportunity to do that.

There is a date

I have an appointment for me MRI.  After a weekend of ups and downs it came as a shock and a relief that my appointment is only six days away.  The prospect of having results in as few as three weeks is positive and a little intimidating.
This weekend I had my convocation for my undergraduate degree and the build up to the day was fraught with vertigo and "funny feelings."  Admittedly knowing very little about anxiety and in no way diminshing its impact, I felt like the textbook for anxiety last week.  The days of anticipating my graduation were far worse than the actual day which was almost "symptom" free.
The day after convocation was a different story.  The vertigo was back with a vengence making me feel nauseous and weak. The buzzing had returned and before retiring for bed I experienced blurriness in my vision.  I started to wonder again how much of my experience was real and how much was psychosomatic.  I cannot shut off symptoms for one day, can I? (in saying that I hasten to delete it because I don't want to minimalize the reality of the other days of the week, it is a constant balance).
I try not to read anything about anxiety or MS right now because I am afraid of being easily influenced by the literature and possibly live the new "symptoms."  Conversely, I am acutely aware that I seem to acquire new "symptoms" weekly.  That cannot be normal for anxiety or MS, can it?

I think I give my mind and body more credit than either deserve and possibly it is a way that I am trying to assume more control over my situation.  After all it sucks to believe that you are not in control of your mind, your body or how either determine your health.
Today I am numb in my right nostril and the right side of my top lip.  It is so bizzare but I have been sticking my finger up my nose all day and yep it is numb.
It is also today that I decided that this has to be anxiety.  I am not sure whether I am prepared for it to be anything else and I am not sure that I am prepared to get answers.  Funny how just 3 days ago that was all I wanted and now that it is a looming reality, answers are the very thing that I am frightened of.  I feel like a walking contradication.  Isn't the mind a wonderful thing?

Who is Afraid of the Dark?

Last Wednesday evening I was sitting behind my computer working when I started to feel "different."  It began with an electric buzzing that moved up the back of my neck and stretched out over my scalp.  It wasn't painful but I could not will it to stop. The buzzing was not audible and I am sure that to the external eye I was not moving but I felt like a static vibration was jumping from one nerve to another.
By the time I was ready for bed the tingling was spreading like a web of electricity over the back of my head and through to my ears making them feel hot and itchy.  I was not fully over the virus in my eyes and so they felt heavy and dry as well creating a familiar sensation.  I began to panic and so I woke up Landy.

"I do not want to go to sleep, I feel funny and I am afraid that I will wake up the way I did a few weeks ago!"
To which Landy sleepily replied, "well you can't stay awake all night that will not help."
I realized that and a completely helpless feeling overcame me.  I am not in control.
"I have to do something, I cannot wake up like that again."

By now Landy had fallen back asleep.  I really wanted to be angry with him.  At the same time how could he possibly understand how I felt?  Some experiences are common to almost everyone like laughing, smiling and crying but vertigo, "buzzing" and tingling they are not everyones lived experience.  Landy is usually very sympathetic but to be fair that evening I had not conveyed how afraid I really was and he could not see what I was experiencing.
I decided to take a sleep aid (practical but not something I want to do on a regular basis) to ensure that I got some rest and was asleep within minutes.
Unfortunately I woke up with the same feeling in addition to vertigo.  FANTASTIC.  Most of the time I can function if the vertigo is minor, similar to the feeling you get when you have not slept in 24 hours.  That morning the vertigo felt more like I was walking on the deck of a ship in choppy water.  Still, I had so much work to do and I did not want to get behind, I decided to go to school.  Have I mentioned that I am trying to manage these symptoms while attending a Master's program?
I made it at school until 11am.  The vertigo, while sitting in class, transformed my head into a helium balloon.  I felt like I was watching the class from a higher vantage point and now the sensation beneath my feet was like walking on a cloud.  It is so weird to have to tell yourself that what you are feeling is not real and to try to ground your cognitive mind.  I spent the next 30 minutes in a school washroom trying to get my stomach to stop reacting to the vertigo in my head.  I needed to get home where I could lie down.
Driving is a challenge when you are not feeling well. I did not know how I was going to get home so I used my Blue Tooth to call Landy and asked him to talk to me while I drove.  I do not advocate being distracted while driving but in this situation I needed someone to help me remain calm for the next 20 minutes.
I only talked to Landy for about two minutes, it turned out I just needed a good cry.   

"I just want answers, I don't want to feel like this anymore.  If this is anxiety I want the medication that will make it stop!  I want them to call with my appointment for the MRI. I hate this!"
All Landy could say was "I know."

I got into my house just in time and would spend the rest of the day and night on the couch.  By the evening the feeling had subsided and I could go to bed with much less anxiety and fear.

I may not be afraid of the dark but like most people I have a fear of the unknown. I am beginning to feel anxious and want to start finding answers because there are a lot of questions.