Friday, May 31, 2013

I'm just too tired

I'm so tired, just exhausted.  I have nothing left.  This is fatigue?  'Fatigue' sounds not so bad, not so doesn't seem like the right word to describe this.  I feel like I could just lie down forever and ever.  I cleaned half of one of our bathrooms and my right arm instantly weighed 3 times more than before I started.  I walked upstairs to get something and my thighs literally burned as if I had just spent 20 minutes running on the treadmill.  I opened the fridge to figure out dinner, stared at it for a minute, shut the door and sat down. 

I have the slightest hint of energy mid morning and unfortunately work gets all of that.  I make all kinds of plans and commitments inside my head that I will do after work.  They just never happen.  Hardly anything gets done anymore and if it does, I'm completely finished for the rest of the day.

This just gets worse and worse.  I'm not having a relapse, so is this just me now?  Is this my new normal?  Does this get better ever again????

I hope so because the level of guilt that is coming with this ability to do nothing is almost unbearable.  I'm letting everyone down.  My family and friends deserve better than this 'me'.  I deserve better than this 'me'.

UPDATE:  I was starting a new relapse, just didn't realize it.  Thank God this was not my new norm....back to just normal fatigue for me.

Thursday, May 23, 2013

Paperwork, paperwork, paperwork (and a nice dose of disclosure)

Through my employer I am entitled to a critical illness benefit.  There is a handful of diseases that this benefit applies to and this is one of them.  I'm not sure how I feel about that to be honest.  I mean, this being on the list of diseases that suck so bad you deserve a payout just adds to the reality that this is not a small thing.

It is a descent lump sum payment.  It is meant to be there for me when I need to purchase assistive devices, have modifications made to my home, need a caregiver or can't work for a while.  Again, all scary thoughts for me.  I suppose I should feel fortunate to have this kind of insurance as I'm sure there are many who don't.

I have to apply for this now because you have a limited time from diagnosis to apply or you cannot receive the benefit, I believe it's 12 months.  This meant I had to tell my employer.  I had been hoping to put this off for quite a while longer.  If I wait though, I'm out of luck.  It seems silly to me that with a critical illness that isn't going anywhere they put such a short claim allowance period (I guess it gets them out of quite a few payouts). 

I contacted my HR department and they said that they could not initiate the claim without disclosure of the reason for it, I had been hoping I would be able to deal with the insurance company directly.  Follow this call with a very personal and terrifying conversation with my regional director (boss) and the process has begun.  Another very big life change.  I have worked hard to reach where I am and I had planned to continue to climb within the company.  I can't help but worry about how this has likely changed senior leaderships ideas of my future growth with them.

Anyhow, what's done is done.  So onto the paperwork!  HOLY PAPERWORK.  I received two separate sets of claim forms.  The first twelve pages long and the second eight.  I have to have my GP fill out four of these pages, the rest are special just for me.  The questions request incredible detail and specifics.  Now, please bare in mind, I can't remember who I just spoke to on the phone five minutes ago half the time, yet I'm supposed to know the 'exact' date of which my symptoms began.  How in God's name would someone with MS know the first day their symptoms began?  Ummm, could have been when the pleasant bouts of irregularity started 6 years ago, could have been when I felt so tired I was sure I had mono 4 years ago, could have been when I started tripping up escalators and missing steps which has been on and off for years.  I don't have the slightest clue on what exact date this started, so I've decided to go with when I started getting dizzy in 2011 and just copy my doctors work.  Honestly, the people who generate these forms must not know much about MS.

Then, they want copies of all relevant tests and results.  They want dates that you have visited the emergency room and what doctor treated you there.  They want your date of diagnosis.  They want to know what feels like a gazillion pages of everything, which would be just fine with me if I could only remember all the answers.

Oh well, like I mentioned earlier, I'm going to copy my doctor's homework as much as I can.  I have had them print out two years of my medical files and tests so I can sift through them for answers and I've left a request with the hospital for any documents they may have.  I do believe this is going to take a while.

Hopefully I get it done by my deadline next January, LOL.

Talk soon

Saturday, May 18, 2013

Apparently anything goes

All kinds of funky things are happening recently.  Not the kind of things that throw me into relapse panic (it hasn't been a full month since my last), just funky things.  It seems lately like every odd, quirky, interesting, "well that was strange", thing that happens to me boils down to MS.

It never ceases to amaze me how this disease can affect every part of my body, yet the only thing actually wrong with me (test wise) is my brain... and a bit of my spine.  I always figured if my arm hurts, something's wrong with my arm.  If my sight is blurred, something is wrong with my eye.  You get the point.  Apparently, that is no longer the case at all.

New strange stuff...

I have this spot on the side of my upper right thigh that gets hot.  Really, really, hot!  Not to the touch though (I had my boyfriend feel it) but it is definitely freakin' hot!  It last a short time and goes away.  This started a few days ago and happens quite a bit in a day.

I heard, yes, heard, a vibration in my right ear.  It got louder and louder and louder to the point that I did enter the realm of panic.  I could do nothing for the few minutes it lasted.  Then, it just stopped.  Just like that.  Weird.

Restless legs.  Okay, these are driving me absolutely bat shit.  When I'm driving I have to kick off the shoe that is on the leg I'm not using and actually kick that leg constantly and at one point even had it crossed over the one that was trying to operate a vehicle.  The one driving just had to suck it up so I didn't kill anyone.  I have a 2 hour commute most days and this has become hell.  Sitting on a couch can only happen for 20 minutes or so max before I go bonkers trying to ignore the crawling feeling shooting up and down both legs and have to jump up and walk it off. 

And finally, my absolute favourite...I have spiders crawling on my forehead.  I'm serious here.  Okay, no, there aren't really spiders.  Man, I'm telling you though, I swear they're there sometimes.  I'm watching tv, minding my own business and along they come.  They crawl out from my hairline and down onto my forehead and then start to party.  I jump, brush the imaginary buggers away, and back they come.  Please someone explain this one to me.

The thing that get's me about all these things is they are all related to MS.  I even googled sensation of spiders on skin and low and behold, there it was, commonly experienced by people with MS.  Get out of here!!!!  The ear thing, apparently not so common, but it's got to do with a muscle spasing out by my ear drum and "sometimes experienced by those suffering from multiple sclerosis".  Hot spots...MS.  Restless legs...MS.

I try not to look up too much info anymore on this disease because I have had enough with scaring myself but I do look up what I experience.  I do this because I need to know I haven't lost all my marbles...yet.  I am still shocked every time to find out that, yes, that applies to MS.

I guess it makes sense, if you have a disease that messes up how your brain sends messages to your body then it really could make it feel anything.  I read where one woman said it felt like someone was tearing off her toenails.  Her neuro said she just had to remember that they "weren't really".  Comforting? Not really.  I hope no one tears off my toenails anytime soon, I'd rather deal with the spiders.

Wednesday, May 8, 2013

Is it me?

Is it me?  Is it him?  Is it the MS?

Who the hell knows.  I lay in bed last night with tears choking at the back of my throat.  I had rubbed his back and told him I loved him, he mumbled something back and started snoring.  All of a sudden, I felt alone.  Like, really alone.  Alone in the bed, the house, my life, this god damn disease.  Where did this all come from?

I keep getting up every day and putting a smile on and pushing through.  I tell pretty much everyone I'm fine.  I tell myself I'm fine.  I'm not fine.  I'm sad.  Supposedly a symptom of this crap is depression.  So, the question I guess is, am I really sad or is it just another lesion?  Just another part of this?  Is he really being more distant or am I being more sensitive?  Are the kids really being a lot more difficult or do I have a lot less patience.  More than likely, it's me.

It doesn't feel that way though.  No matter how I analyze it.  No matter how much I tell myself, I'm the one who has changed, I still feel very alone.  I don't have the energy to hang out with my friends, so they call less.  I don't have the energy to be intimate with my boyfriend, so he's pretty much given up.  I don't have the energy to do much with my kids, so they barely talk to me.  I'm really screwing things up lately.

I have got to find some way out of this hole I'm digging.  I have got to find a way to actually feel like I'm pretending to all the time because this pretending thing is getting exhausting in itself.  I'm worried about my next relapse, I'm worried about not being able to walk, I'm worried about everyone finding out I have this, I'm worried about our future financially.... hell, I'm worried about everything.

I feel guilty because my house isn't as clean as it usually is.  I feel guilty because my own children are avoiding me.  I feel guilty because I nap too often.  I feel guilty because there are people with MS who have it far worse than me at the moment, so who the hell am I to complain.  I feel guilty because I don't want to talk on the phone with people.  I feel guilty because every time someone bitches to me about something in their life, I quietly think, "suck it up, you don't know problems", while listening and giving them advice.  I feel guilty because I am nowhere close to the girlfriend I used to be, I am no fun at all.

My God, do I ever sound pathetic. 

Seriously, where did I go?  If anyone sees the old me around, please let me know, I'd really like her back.

Friday, May 3, 2013

Clearing customs just got a lot more interesting

This week was my first business trip with my new travel companion...Copaxone.  Bringing these syringes with you on a plane requires some pre-work.  First, you need a letter from your doctor stating you must travel with this drug, second, you need a prescription label from the pharmacy, third, you need to have the card on the travel case also signed by your doctor and filled out with pharmacy info.  If you have all of this, things will be a breeze right? Wrong.

Flying out of Canada into the states went seamlessly.  I presented the medication, explained why I had it, let them inspect it, provided the letter, went through the metal detector and moved on to my gate.  Flying out of the states back to Canada was a whole different ball game.

First, you have to stand in a completely separate line.  The one that's marked for families, liquids, wheelchairs and medications.  My co-workers do not know yet that I have MS nor do I want to share it, so this required some interesting excuses and downright avoidance as I separated from the pack.  Then, I wait in the longest line ever.  I wait, and wait, and wait.  I start getting the BBM's.  "where are you?", "have you been arrested? :p", "LMAO, what the hell are you doing?".  I let them know they are hilarious and they could go ahead to our gate, already creating the excuses (lies) I would feel the need to make up for the line, delay, etc.

My turn.  I take off my shoes, take off my sweater, take out my laptop, phones, meds.  Place everything in the bins minus the copaxone (it's not supposed to go through the x-ray apparently).  I hand the copaxone to the customs officer.  Let the fun begin!  I get to go through the super cool body scanner first, I pass.  Then I wait while they analyze the one syringe I have left.  They put it in something that literally makes a rooster sound.  I'm not kidding.  Apparently this means I AM OFFICIALLY A THREAT TO HOMELAND SECURITY!  Now I am important enough for 3 customs officials.  The one tells me my medication has 'alarmed' and they will need to check everything. 

This is when I see my worst nightmare.  One co-worker, who thought he was being the only nice one, waiting for me 20 feet away, watching everything.  CRAP!!!!

They take me to the side.  I have a choice, I can be patted down here or taken to a separate room.  "Let's just do this", I say, I am NOT having this guy wondering what's happening as I'm escorted away.  I am groped and patted almost everywhere by a female officer while standing, get this, "arms out like an airplane".  This is for sure a new pic on my co-workers I-phone.  My laptop is swabbed, my phones are swabbed and my shoes are swabbed.  Then I am swabbed.  "Clear, clear, clear, clear".  They finally give me my shoes back, thank God, because I was barefoot on an airport floor, ewwww.  Then I have to re-pack everything I had strategically originally packed in my carry on, which was more than it could handle in the first place.  This, by the way, is a lot harder then you think when your hands are shaking uncontrollably and your brain has temporarily frozen. 

When all was said and done, they thought that would be the appropriate time to ask why I need this medication.  I answered "because I have MS".  Hearing myself say those words, going through the embarrassment of this screening and realizing that I was eventually going to have to tell someone at work, was a burning reminder that this is true.  This is my life now.  Not one day seems to go by anymore that I don't have to accept that everything....everything has changed.  Everything, has gotten harder.