The Invisible Monster

Some of my friends have made the comment lately that they don't really know much about MS and yet since I have been diagnosed I have also had so many people telling me that they know someone that has this horrible disease.  The reality is that most of us come in to contact with an MSer every day but probably don't realise it because this is an invisible monster.

How many times have we MSers encountered the "but you look good" comment?  That's because most of us don't show outward signs of our symptoms, it all depends how the condition affects the individual.

My first encounter with someone with MS was when I was in my early twenties. I was living in Florida at the time and met a lovely woman the same age as me with a daughter the same age as my eldest (at the time about 3).  We became fast friends and were almost inseparable as our children played together.  We spent many days at the mall, beach or playground with our girls.

At her daughter's birthday party I noticed that her mother (who I had never met before) was stumbling around the room and I just assumed that she had been over-indulging in the festivities.  It wasn't until a few days later when I asked my friend if her mum was OK that she told me she had MS.

I didn't ask many questions but did feel ashamed that I had assumed (wrongly) that she had been drinking.  This has happened to me recently (in case you missed my previous blog) so I guess it is true about Karma being a bitch, eh?

I still didn't know anything about the actual disease or what happens in the body so when I was then told by a Doctor a short while after that he thought I might have MS I was literally terrified.  I immediately thought my life would be over or I would "end up" in a wheelchair.  I now realise (being older, wiser and better educated) that this isn't always the case and there are many different forms of MS.

My daughter recently asked me "so what exactly is MS?" and the way I described it to her is that our body has good soldiers (immune system) on the look out all of the time in our bodies to fight off any bad soldiers (viruses or bacteria).  Well for some reason some of the good soldiers in my body went rogue (bad working conditions?  Not enough pay? Too much Daughtry music or Real Housewives on TV?) and decided to turn on their boss (the brain and/or spinal column) and attack it.

These rouge soldiers attack the Myelin (insulating coating) around the nerves, which stop some of the messages from the brain getting through correctly.  These soldiers can attack anywhere in the brain/spinal column, hence the reason why the symptoms are so varied and different for each person.

Most of my symptoms are sensory so they can't be seen, although the chronic fatigue is easy to see before I cover my dark circles with make-up.

My Neurologist told me that he feels I have a "mild" form of MS.  Of course that is good news to hear but a little baffling as these symptoms sure don't FEEL mild.  

I was talking to a fellow MSer about this and he too was told he had a "mild case", even though he sometimes completely loses his legs from under him. His advice was that even Neurologists don't understand how we truly feel because they haven't experienced it themselves.  His told me that the next time a Doctor tells me that it is mild I should grab his pencil, jab him in the privates with it and tell him now THAT is mild compared to MS! 

So enough about me, how are YOU?