My Body...My Tormentor

How much more can I take of this torture as my body fights this unknown enemy and torments me more and more each day?  This question I keep playing over and over in my mind as this weekend passes us by.  While others are being tormented by the storms passing through our province I have been weather my own storm my body attacking itself this weekend.

I was hoping it would be a one day attack those I can handle, but for some reason like the storm passing through our city it seems to have taken hold and not want to release in a timely fashion.  I woke up with little sleep on Friday morning in terrible pain maybe like the storm brewing my body too was getting set to begin the perpetual cycle of torture it had in mind for me this weekend. I could not get comfortable no matter where I sat or laid and before I knew it my back was spasming and my legs again stopped working.  As always my mind said to itself this will only be for a short time. I took one of my coveted diazepam's that doctors are so worried I will be come addicted to and will not prescribe any more to me until they can re-diagnose my condition and prayed that it would take away the pain and spasming.  Lucky for me after an hour it did make me groggy enough to fall asleep for another short hour.  As I woke up and went to get off the couch again my legs gave way and down I went crawling to reach the bathroom and praying I could find the strength as I was alone I did manage to pull myself up.  I then slowly and very unsteadily made my way back to the couch and took another pill realizing that the one had done nothing to ease the pain or spasms gripping me. I stayed in an awkward position on the couch until hubby came home from work being too weak to move and unable to stop my body from twisting.

I know I have mentioned before how wonderful a husband I have but I have to say it again.  Seeing how poorly I was and could not find a comfortable place to be, and having such trouble walking I asked him if he  would be kind enough to rearrange the living room and bring out the air mattress we use to use for camping that seems now like a lifetime ago for me to lie on. As always without hesitation he did sets me up with a bunch of pillows behind me using the couch for support a drink beside me and everything else I could need to be able to watch TV or read.  It was great until that dam mother nature called without thinking I tried to get up but could not my legs just would not function Chris came running as he heard me and helping me up then walking with me we made it....even with all this happening we both joked it's times like this I am glad we don't live in a house that has other floors or a long walk to get to where we were going as this venture took me a good twenty minutes when it should take 10 seconds tops. By the time we went back into the living room I was in such pain that Chris wanted to take me the hospital but I refused saying what for? As always I will wait 10 to 12 hours waiting to be seen  only to be told there is nothing wrong with me and sent home I have played that game for many years with the same outcome.  I asked him to give me two more of my prize possessions and I will try and get some sleep propped up the way I was on the mattress and for him to go bed.  

I woke up from a few hours sleep if that's what you could call what I had to catch the morning breaking into a new day, still not feeling good but at least my legs were working better than the day before, meaning with a lot of work on my part I could walk without needing Chris's help.  As the day progressed I knew another commitment we had planned weeks before was going to be cancelled on our end not because I didn't want to go but I knew I was in no shape to go.  I no sooner sent a text to my friend to tell her we could not make it than my muscles began some of the most violent spams to date.  They were so strong and causing me so much pain that Chris called an ambulance after watching me for 30 minutes and my being unable to answer him with no end in sight but as always by the time the paramedics arrived  they had subsided enough for me to able to talk again. My speech was weak but I was able to catch my breath and talk to them.  They took my vitals and said everything was normal and did I feel the need to go to the hospital (loaded question to someone who has lost all faith in our medical profession)....now a little voice in my head said go but the other part of me... the one that for years and years has been in and out of the hospital said don't bother you already know the outcome and that voice won. Looking back in hindsight maybe I should have as Saturday night was a non-stop fun filled night of wave after wave of  spasms and had I'd gone in maybe just maybe they would have believed me and had someone in the medical field seen it 1st hand would they have done something more to help me I don't know and that opportunity is now in the past.

Sunday and now into early Monday morning I'm still feeling the effects and although my spasms are not as frequent nor as violent as Friday and Saturday my body is weak from the beating it took.  Which brings me back to the question how much more can I take of this and how can I survive knowing the next neurologist I see is not until October?  As for my coveted prize pills which help a little for I can't take a large enough dose to truly help me in anyway dwindle away am I going to be forced like the addicted junkie they are making me feel I will become if they give me more need to go looking for them on the street? This past weekend also makes me wonder will I ever get back my faith I use to have in our medical profession and will I be able to  take up the offer to go to the hospital when the need arises instead of watching the worry and pain cross upon my husband face? I pray these last few days are it until October could you who read this hope the same.

 I'm still trying to find the bight side of this crazy ride...it is a long weekend so I'm hearing... Happy Canada Day and to my American friends Happy Independence Day!

Your Prospective Versus My Reality

Last week a company who support the not for profit organization I worked for held a charity BBQ.  My friend who works in the same industry as the company holding the BBQ was over the night before and asked me if I felt good the next day and was able to drive,  would I like to join her and her co-workers for lunch she would watch out for me and make sure I had a place to sit.  She also mentioned the girls I dealt with at the company holding the BBQ always ask how I am and would be happy to see me.  I told her I could not make a commitment at that moment but would let her know the next morning if I would be able to attend.

Having not been out of the house for the past few weeks I wake up in the morning with anticipation hoping that my body will allow me a few hours of being able to leave the confines of my home.  My first two hours in the morning are spent  with a heat pad on my neck and shoulders which have stiffened so bad in the night that should I not heat them, the intense pain from any little movement sends my body into spasms overdrive. Then I move it down to my back to loosen up the back muscles to be able to walk as best I can. After that I take a shower and get dressed before my husband leaves for work so he can help me get ready for the day.  (Lucky for me and thanks to an understanding work place they allow him to start at 11AM so he can help me get set-up for the day as I am alone until he comes home from work to help me, once again.) I am having a good morning which means yeah I can leave the house for a few hours to attend said BBQ.  I text my friend and tell her I am on my way.

When I arrive it is already busy and I spend a little longer then I hoped trying to find a parking space which would not require a long walk because the further and longer I walk the more my muscles will start to stiffen and walking becomes harder and harder to do.  I park and as I am walking towards where I had spotted my girlfriend and her co-workers sitting, I run into a co-worker from my office.  She comes flying at my all excited as fear clutches my body I brace myself  for her exuberance in seeing me, she throws her arms around me clutching me in a hug that is starting to send my system into shock waves as I move away and try and not lose my balance as she lets go.  She steps back and says how wonderful it is to see me and how great I look.  I also get the standard  "I've been meaning to call you to see how you are but you know how it is, but I promise once it starts to slow down I will call you".  Yes sure do... and my friends/family who do read this please stop doing this at least to me...nothing drives me round the bend more then the  promise of a call or visit when you and I both know you have no intention of making good on that promise.  If you find yourself getting ready to make this statement please stop and say to yourself am I about to make this statement for my benefit or to make Heather feel better, because it doesn't.  If you don't know what else to say, stop after saying it was great seeing you and I will not think any less of you.  After the exchange of empty promises she says she wishes she had time to talk but has to head back to the office.  No worries I didn't come to see you if you want honesty hehe, if that was the case of why I was there I would go to the office if I wanted to see my co-workers not a BBQ being put on by another company.

Had a quick bite with my girlfriend and her co-workers, say hello to a few other people and leave.  This outing lasted two hours including driving time but to anyone who is ill this was like running a marathon both physically and mentally.  Once home I take a nap because I am so drained, having used all my energy to look and act as normal as possible in front of people.

Now the prospective part of that short encounter with my co-worker.  On Sunday I get a call from my only co-worker who does call to see how I am on a regular bases.  She laughing as she says to me "I hear you look great and may be coming back to work soon?"  Excuse me?  Well a few co-workers saw you at the BBQ and said you looked good so they thought you might be coming back to work soon.  So based on a two minute encounter I am well enough to go back to work your telling me?  Yes, she said still laughing...boy you must be thrilled. I did explain that a person who is sick can have some good moments or days but those times are few and far between.  "Thanks" I tell her for saying that, especially when I decided at 11AM that I would be able to go to the BBQ that started at 1130AM, that is how last minute I was able to decide if I could go or not.

So here is my reality of that outing I started with telling you how my day starts each and every day. As I walked to the table where my girlfriend and co-workers were I had to grab the nearest arm of a person I did not know as I was starting to fall over to catch my balance. My girlfriend grabbed my lunch so I would not have trouble and could just sit and enjoy the company.  She then drove me the short distance after lunch to my car because of the stimulation of the situation was starting to cause my body to go into muscle spasms, and I sat in my car until my muscles calmed down enough to drive myself home.  I had not left my house in weeks besides a doctor's appointment which finally I am told they are getting me into the Movement Disorder Clinic but the appointment is not until October. Should they not be able to help me my doctor is thinking of sending me to the Mayo Clinic to get properly diagnosed.  And then I spent the rest of the day sleeping because a two hour outing did me in.

But no worries I tell my friend, I look so good..... I'll be into work bright eyed and bushy tailed in the morning.