WHEN IS ENOUGH…ENOUGH?!!

As I sit at my desk labouring over this computer screen with only one eye, the title of this blog is a question I’ve asked myself for years but recently I have struggled for an answer in more despair.  As I wrote in my last blog, I was experiencing an attack, with MRI verification and stated that I would report back on my progress, well there hasn’t been any reporting because there hasn’t been any progress, at least good progress that is.  I knew for sure that I was in an attack since the end of April when I had my MRI.  It started out slowly not creating a huge concern for me.  However once it was established in my body the concern grew rapidly!  My balance was terrible and the neurological discomfort I was experiencing in my feet and lower limbs rapidly turned to pain.  There wasn’t any consistency just misery, one minute my feet would feel like they were on fire and the next feel like the burning sensation that occurs with extreme freezing! My ability to walk, even around my house was becoming severely impacted; I just couldn’t move my legs or pick my feet off the ground!  It was at this point that I was seriously considering taking prednisone but decided to tough it out instead.

This attack had similarities to many previous episodes but also exhibited some very different characteristics.  The pain from my feet and lower limbs began to subside, not ever disappear but become much less bothersome.  What was now happening was the neurological abnormalities were moving up my body and entering my hips, mid section and torso.  The numbness and loss of feeling was growing and the electrical vibrating sensations that had become so infrequent they were barely noticeable anymore were now back with a vengeance!  Not to end there…my fatigue factor was growing seriously and not just with my legs and general energy but into my hands and forearms.  It was as if the attack was gradually moving around and up my body.  It got to the point that I couldn’t work on my computer for more than 15 minutes before my hands could no longer navigate my mouse or keyboard properly without taking at least a 2 hour break.  There was just no strength or endurance in my hands, I fumbled with everything and could barely use cutlery, my wife had to dish up my dinner and cut my meat as though I was a five year old!  It was so bad that I could not even ride my scooter for any length of time because my hand and wrist would completely fatigue out from constantly and repetitively controlling the throttle with my finger and thumb.  That really sucked but there was an even shittier circumstance to deal with.  My butt had gone numb and I couldn’t really feel touch or sensation.  I think it’s common when dealing with “number 2” on the toilet that most of us are either a lefty or a righty when it comes to the wipe, I’m a righty and given the lack of feeling and weakness in my hand I couldn’t even wipe my ass properly!  I’ve never been one to hold back details when it comes to difficulties of dealing with MS, I can’t be embarrassed about having this terrible disease or the difficulties it creates so there you have it.  It is degrading and uncomfortable but that’s how it is, fortunately I did not require assistance with my toilet troubles!  My hand weakness lasted for about two weeks before starting to recover, I can’t say that it has recovered because I haven’t really tested it but it’s definitely not the problem it was.

So as this attack seems to jump around my body, my hope was that as it moved up my body it would eventually exit from the top, dreaming that I had a skull cap that I could just flip open and let all the MS problems escape from my body.  Yeah just a dream, unfortunately my problems didn’t end there.  My balance difficulties never seemed to improve much and it seemed that I was becoming dizzier.  This latest problem was not diminishing but growing and beginning to effect my vision.  I didn’t realize what was happening until one evening flipping through the on-demand guide looking for a movie that I couldn’t read any titles or words on the screen.  I could still see the picture but focusing to read was not possible and I finally realized everything was so blurry because I was experiencing double vision!  Double vision is not an uncommon symptom but something I hadn’t experienced until now, OH JOY!  This latest problem escalated quickly once I realized what was happening and within two days my vision was hooped.  I had lost the vision in my left eye before due to optic neuritis but this sensation was even more troubling.  A new disability that I was not prepared for, vision affects everything!  No depth perception, unable to stand without extreme vertigo making getting around with just my cane very difficult and dangerous.  Now this is when the title of my blog really came to life.  ENOUGH ALREADY!!!!!  I’m tired of fighting this beast, Lord I don’t know how much strength I have left, why must the trials I face never end?

This new vision difficulty was too much; I didn’t want to try to tough it out any longer and called the MS clinic for a high dose prednisone prescription.  Tomorrow will be my fifth and final dose…effectiveness yet to be determined.  The double vision is still in full force but I do think it’s improving, I can’t do anything other than sleep without an eye patch but at least I can see with each eye so I move the patch from eye to eye which makes it easier but in a vertical position I can get dizzy by just moving my head!  So with such problems standing or walking I’ve resorted to pushing myself around the house on my office chair.  That’s not so bad; at least it gives my legs some exercise, especially when I hit carpet!  The other good thing is that I have energy to move myself, I’ve been feeling stronger and my legs are moving much better so I’ll attribute that benefit to the steroids and just keep praying that my vision will normalize soon.

This last attack is now coming up to 3 months and has had so many devastating facets to it but it’s really tough when the emotional outweighs the physical.  I recently had to deal with one of the saddest MS experiences that I can recall.  As my physical abilities have really diminished since my return from India, I am no longer able to carry on with some very important rituals.  I live in a bungalow so almost all I need is located on the main floor but our children’s bedrooms are on the lower.  I had a ritual with my daughter to take her to bed, have her read a story to me and tuck her in for the night.  As my walking deteriorated I found it too difficult going up and down the stairs and had to explain to my little girl that daddy could no longer take her to bed.  That was SOOO hard but she accepted it quite well to my surprise however initial reactions can be deceiving.  After watching a movie one night she was falling asleep, very tired which can elicit different emotions.  After waking up (sort of) she became very emotional with the thought of going down to bed on her own, she just sobbed with tears and couldn’t speak.  I asked her if she was upset because daddy couldn’t take her down to bed anymore, she shook her head no but it was written all over her face and cutting my heart to pieces.  Even today I can’t think about that moment without breaking into tears.  Lorelei took her to bed but she still couldn’t talk so she just nodded her head to the questions Lorelei was asking and it’s quite obvious she’s so upset because of what’s happening to her dad.  Since my daughter is the youngest it’s hardest for her to hide her true feelings but the simple fact is that everyone in the family is affected.  My son seems to keep these feelings bottled up inside but as things deteriorate I can see changes beginning to occur in his demeanour.  The horrific circumstances brought on by multiple sclerosis don’t just affect me; it’s hard on the whole family!  Of coarse my mother is devastated to see me continue to deteriorate and I hate to even fathom the uncertainties of life that my wife is forced to contemplate.  Then there are my two new stepsons who are not used to the disastrous outcome that MS can create, not to mention my own siblings.  It’s HARD any way you look at it and it just seems to get more complex as the disease progresses.  However love and sticking together as a family will get us through it all.  I explain to my children that their dad is very strong, I won’t let myself get beaten and when my strength isn’t enough I have the strength of Jesus and he can pull us through anything!  I have two constants in my life, God and the love of family and these constants will sustain me through everything I must face.

So finishing off this blog on a happy note is satisfying considering all the crap I’m going through.  Everything else aside, I am so very blessed to have so much love and support to surround me.  God brought my beautiful wife into my life with her unconditional support and love and changed everything for the better.  I grew up in a family of six and who would have ever thought that I would have my own family of six.  Our oldest is 18, then 16, 14 and lastly our little darling comes in at 10.  Come September our 16 year old son will be moving in with us full time to finish high school and that makes for a full house.  I share custody with my ex-wife so getting a reprieve from each other every other week I think will be healthy for the kids; I suppose Lorelei and myself too.  At any rate having a large, loving and supportive family life is awesome even though it comes with many challenges.  It’s almost comical, we’re living a sort of new age Brady Bunch and for anyone that can remember that TV show, it was a lot of fun!  Only bad part is that we’re missing Alice the maid, she would be a definite bonus!    

So as long as I can keep emotions on the lighter side and focus on the many blessings that God has bestowed upon me and my family, I can honestly say: LIFE IS PRETTY GOOD!

LC