Thursday, September 4, 2014

Life with Dilbert

Acceptance, that is the stage where I find myself after 2 long years of battling Dystonia.  WTF is Dystonia?  Dystonia involves involuntary contraction of muscles that normally work in cooperation, so that a body part is held in an unusual and often painful position as a result. Dystonia can affect any body part, and can result in both embarrassment and the inability to perform daily activities.   Mine is called oromandibular or lingual dystonia, sometimes also known as Tardive Dyskynesia.  My jaw, my tongue, my palate.  I have decided to name my Dystonia and his name is Dilbert.

This stage of acceptance brings both peace and grief at the same time.  I call myself hope junkie as I am the eternal optimist, the idealist.  I crash and burn often yet somehow when I catch a glimmer of that magical elixir called hope I breath a little faster and before I know it I am flying with possibilities and what ifs in Magic-land.  Sometimes they really do come true and sometimes I am hurtling back to earth with the bitter taste of disappointment in my mouth.  I remember googling my crazy side effects of the anti-depressant I was on and copying the link in a mail to my sister and husband.  I was in so much pain and so freaked out and when I read: months, years and sometimes forever I freaked out.  FOREVER?   What do you mean FOREVER?  I cannot do another day of this, not one more day.  Well guess f*cking what?  You can and you will and you have to.  Over 700 days, I have lived with this for over 700 days.  Not because I am brave or strong, because I have young children and a husband so I cannot take my own life.

Have I thought about it?  Oh yes.  Very much so.  I have tried various medications to tame or even kill Dilbert and the one made me so suicidal.  I thought about taking my own life every day.  Many times a day.  It came to a head on the 2nd of April and I raged all day, literally fighting for my life that day.  It was the classical battle between good and evil with death standing very close and pulling me little by little closer to the edge.  I prayed and prayed all day and ironically it was the suicide of my own grandmother that meant I had to stay.  I was not going to take on that legacy and not going to do that to my mother or my children or Gary.  To be THAT family spoken about in hushed tones.  When Gary came home we had a chat and he called my doc that said depression was a side effect of those meds and I went off immediately.  The suicidal thoughts also went away.  Geez it was a hard and scary time for me.  I remember my birthday tea on the 9th of April, exactly 1 week later and looking at my friends thinking if only you knew how close I was to not being here just 1 week before.  But enough of that, its horrible just writing about it.  And no, I don't want to talk about it.

So what am I writing about?  I suppose in the light of Dystonia awareness month I am writing to try and explain what life is like for me.  I posted a clip of myself showing my spasms on FB.  It was ugly and embarrassing but also a little liberating.  When you are trying so damn hard to be normal and act normal but actually you are dealing with a neuro movement disorder 24-7 you never quite feel normal.  Its a lonely place to be.  Apart from the pain the worst part is speech.  I have to talk against my tongue.  Its very hard and very tiring and it makes it hurt far worse.  That makes me feel disabled which in turn makes me super cross.  I blame Lilly the drug company for making Cymgen (Cymbalta generic) and then denying responsibility.  I blame my hard as nails don't give a f*ck psychiatrist who prescribed the meds, reported my case but then when Lilly said it doesn't cause Dystonia she washed her hands off me and hasn't answered a single mail since.  Her time will come, we are all held accountable for what we do and do not do. 

So how do I manage?  I suck sweets, I have a baby teether, I drink lots of hot tea, cold water.  I use masses of lip-ice/chapstick.  I try not to talk on the phone and save my speech for when my kids get home and I need to do homework.  I cannot read them stories anymore and it makes me sad.  If I say something and they don't hear me (its hard to speak clearly) I want to cry at the thought of having to say it again.  Thank God I can write and thank God I don't have it in the rest of my body.  I can exercise so I do.  One gift of Dystonia...becoming a triathlete.  Its my great big F-you to Dilbert.  I am sorry I have to swear so often.  It helps with the cross bit.  I am not a loud or screaming type but sometimes I want to collapse on the floor and rage at the world like a 2 year old crying and yelling.  Itsnotfair Itsnotfair Itsnotfair.  Then I watch clips of people with it all over or really bad facial grimaces and parts of me feels guilty because I am mild in comparison and parts of me so afraid that mine could get worse.  I saw a clip today that was so horrendous I thought no way would I live like that.  But then I thought I need to hold Daniel's baby for the first time one day and I need to button up the back of my daughters' wedding dresses like my mother did for us girls.  I have to stay and I have to just hope that it never gets worse.  I have to hope that I can manage it better and maybe, just maybe, I might even hope that they find a cure for it and I can have my life back.  Its possible that I do not have to do 40 more years of this.     

PS:  I have thought about what the hell I am going to do once I graduate and I start my career as a counselor with the real possibility of not managing to speak for lengthy periods.  My response...hope junkie thinks in the next 2 years somehow something happens and it lessens or stops and I just open my great big mouth and talk.  Fluent, easy, painless.  Please God.    


  1. Mel... I will NEVER again complain that I am overweight. I will NEVER again complain that I am too short. I will NEVER again take for granted that every morning I wake up and have a lot to be grateful for. Thank you for sharing and being honest about how this has affected you - giving me a glimpse of the challenges you face. You are constantly in my prayers and my hope is that someone... anyone, somewhere... finds something that will bring relief to you and all of those that are suffering with their own form of "Dilbert". xx

  2. Names are good. I named my brain tumor Angus. I think of you often and hold you in my prayers.

  3. I am so sorry :(

    I am on Cymgen to a) assist with depression and b) pain relief from Fibromyalgia.

  4. Ah Mel... I pray every day that they will find a cure and I am so very glad you are still here.
    I can't imagine the pain and discomfort you are experiencing, but not being understood would drive me round the twist!

  5. A very long time ago, an elderly neighbour of ours had dystonia in her neck. She was one of the first people to get the botox treatments. It helped significantly after she was first misdiagnosed with depression and got shock treatments.
    I hope you life Dilbert down, as it seems you are doing!