Tuesday, January 12, 2010

Pity Party, Anyone?

Yes I know, I don't normally have two posts within days of each other unless something major is going on.  Rest assured, my world isn't exploding around me, I simply had a topic I felt the need to touch on.
I talk about strength, coping, educating, and support here a lot.  But, there's another side to living life with a disease like MS:  Pity parties.  It struck me after talking to a friend that the image I portray of myself here isn't entirely accurate.  "But Mis, you're so strong".  I hear that so often, and it always baffles me, because Lord knows I don't feel strong at all.  Truth is, most days I am afraid of my own shadow and the shadows of my future.  While I do want to encourage those either living with MS or know someone with it to empower themselves with the strength knowledge can give, I don't want to paint myself as some stoic pillar of strength either.  So... today I want to bring you along to my pity party.

Yes, I most certainly DO have pity parties too.  Most days I go about life in relative peace of mind, but some days I wake up and just think "URGH!"  Thankfully, my pity parties don't last long.  I spent the first six months post diagnosis in one huge pit of depression, and I learned from those dark days I can not allow myself to wallow in what is versus what used to be.  These days my down spells typically last anywhere from a couple hours to couple days, but never very long overall.  So why have pity parties at all?  Simple really: Because I am human.  I really believe anyone struggling in their life has the right to feel, process, and deal with those emotions.  It's when we don't deal them that they grow into something much deeper and darker.  I've been in that dark place, and I have no intentions of going there again if I can avoid it.  For me, letting myself have "ok my life sucks" moments allows me to feel and process those emotions, and then move on.

My pity parties usually consist of a lot of sadness, and are usually brought on by a symptom worsening that particular day.  Last night for instance, I had a small one.  The left side of my face had been bugging me all day, my left leg simply did not want to work correctly no matter what I did, and I'd been having girdle band pain all day.  I had gotten up to use the washroom and my leg just hurt so bad as I limped along.  The muscles just refuse to relax sometimes, and trying to walk on a cramping leg is rather painful.  My husband heard me cursing under my breath as I made my way through the living room, and asked what's wrong.  My response?  "I just don't want to have this damn disease anymore."  The minute the words left my lips, it was like a flood gate.  I ended up in the bathroom for a good 20 minutes just to have a good cry alone.  I had had enough, I was in pain, I was frustrated, and I just didn't want to have this wicked, nasty disease anymore.  Logically, I know no amount of tears or cursing is going to change a thing.  I can curse up a blue streak bad enough to make a sailor blush, and I can cry so hard I fill the bathtub, and when it's all said and done I'll still have MS.  But dang it, I don't care.  Sometimes I just need a good crying, angry moment to let it all out.  A moment to say "poor me, this sucks"...so I can then calm down and move on.

So while I don't want pity from anyone else, sometimes, I do have to allow myself a little pity party for myself.  It's my way of coping and moving on without falling into a true depression.  And you know what?  I truly believe that's ok, if not healthy.  Better to have a crying moment in the bathroom than months in depression, right?

For all of you struggling in your lives, be it due to MS, another illness, or simply life circumstances: Remember it's ok to have moments of weakness.  It's ok to cry, and it's ok to be mad as hell.  Allow yourself to have a little pity party when needed so you can process those emotions.  Once you're done cursing and crying- leave the party and rejoin your life a stronger, calmer person.  It's great to have strength the ability to cope with all life throws at you.  But when you reach the point you're thinking "The next person to say 'but you're so strong!'...I'm going punch out", it's time to let yourself have a much needed pity party.  It's ok to be human- even with all our flaws and imperfections.

Be well all :)


Sunday, January 10, 2010

Looking Through the Other Side of the Window

It's now been about 15 months since I was officially diagnosed with MS.  I still remember the feelings that seemed to engulf my very being that fateful day- the fear, the sadness, the anger.  I also remember scrounging the internet to gather every piece of information I could find on this disease to the point it became almost obsessive.  I was desperate to understand what was happening to my body, and even more desperate to understand what this diagnosis meant for my future.
I still stay on top of the latest news and research on MS, but as for the disease itself I know longer feel compelled to read the same information twenty times over.  Now, I've taken the knowledge I've gained along the way and I try to educate others on this greatly misunderstood and underestimated disease.  In many ways, that's what this blog has even become.  As I've mentioned before, I've played the online game "Second Life" for quite some time now.  In Second Life, I belong to a Multiple Sclerosis support group, and I'm quite honest with those I meet in the virtual world about having the disease in real life.  I often tell people the reason I'm so open about having MS, and happy to answer questions, is because with an estimated half million Americans living with this disease, there's a good chance at some point in our lives we'll all have someone we know develop it.  If my openness about MS helps even one other person to understand it, and potentially make someone's struggle living with the disease a little less scary, then it's worth it.

Well... it seems my own words rang true about the likelihood of people knowing someone with MS during their lives.  A couple days ago, a friend of mine from Second Life was also diagnosed with MS.  It's very different being on the other side of the window, looking in on someone newly diagnosed versus being the one struggling with it.  I must say though, it's not easy.  In some ways, it's actually just as hard.  I think anyone can talk about having MS, or write a blog about what life with it is like.  It's entirely different talking someone you consider a friend, and trying to find the gentlest way possible to answer their questions and give them information without adding to their fear.  My heart just broke as I spoke to him.  I wouldn't wish this disease on my worst enemy, let alone a friend.  I wanted so badly to just make him feel better, tell him everything is going to be fine, but I knew doing so would only be a grave injustice to him.  He deserved to know the facts and the truth about life with MS, so I just tried pass my knowledge onto him as gently as I knew how.

Which actually leads me to my latest 'gripe' about the medical professionals and how they handle patients newly diagnosed with MS.  It seriously floored me how little information his doctor gave him.  He was essentially diagnosed, told he'd go on injections, and not to worry about it.  Like he'd just been diagnosed with a common cold!  How in this day and age, with all the information at our fingertips, can a doctor be so uneducated?  It really made me angry, because not only does it put the patients at a great disadvantage it can actually cause them a lot more undo stress when they struggle through trying to understand what's happening to them on their own.  Needless to say, I advised my friend he may want to seriously consider shopping for a doctor better educated on MS.  It's like I say all the time- you as the patient are the employer.  You have every right to expect and demand the best and most knowledgeable care available.  If your doctor, your employee, can't deliver what you need and expect?  Fire them and find a better one.

To my friend newly diagnosed (yes I gave him this link), know I'm here for you if you need me.  To everyone else reading this- I'll reinstate a challenge I've put out there before: Educate yourself on Multiple Sclerosis, and spread that knowledge to at least one other person around you.  You never know the difference you could make in someone's life by doing so.

Be well all :)