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!

 

 

 

 

 

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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.