Archive | January, 2014

Still learning……

31 Jan

I am not doing the whole am I relapsing thing very well.

My appointment with the Neurologist went well on the 23rd December and I happened to mention that my left arm felt very sore and had restricted movement (couldn’t fully extend) and that had lasted a couple of weeks.  Nothing else was mentioned about that until I received the notes from the appointment I was shocked to see that he had noted my arm was a probable mild relapse.  Oh dear I thought, that means some things that have happened before I haven’t mentioned and any future events like now (altered sensations worse down left side) have not been brought to the attention of my Nurse.

Needless to say, I feel like a right womble!  Did anyone else have trouble deciphering between normal stuff and relapsing stuff?  I always feel pretty bad and because due to not being diagnosed for years I pushed through, so now, things have to be very bad and very obvious for me to alert family/Nurse etc.  This worries me, in fact the whole thing really as my Avonex treatment has been 8 months and to be honest I have when I think carefully been relapsing pretty consistently as before.  I must give it more time but the thought of being put on second line drugs scares me as the risks are greater.

Tomorrow marks the month of my diagnosis.  February will never be the same again.  My year Anniversary which seems weird as I had been living with MS for years!!  I know I am not alone in this either as it is so hard to diagnose.

MS is ruining my life slowly but my attitude will never be taken, I am a stubborn cow and I love life so (blows raspberry).  You have given me a beautiful gift though, the realities of life.  I feel stronger, more knowing than ever before.  It saddens me, even frightens me but I am sure the people in my life now want to be there and I love all of them.  I can let go of the pretenders.

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The importance of Integrity

21 Jan

It has been a while but I needed a break.  A lot has happened but the last 2 days has shaken me not because I am surprised but because it has actually happened.

My Mum has lost her integrity and probably did a long time ago, in fact the day she got married to my step father.  Unfortunately, when you find yourself young and from a broken home, you have to go along with your mum/dad’s choice of new partner and life.  Even as a child you know when they are making a mistake and I did.  She was making a cracker of a mistake and far worse than the first choice, I.e. my Dad.  Then, if that wasn’t bad enough, you find out that he has kids, horrible kids.  Seem fairly normal at first but then you realise they are self serving, self pitying, antagonistic little shits with enough baggage to rival an Airport, you bet I wanted to run.

i had made the wrong choice.  At age 6 my parents decided it would be a great idea to ask me that question all children should never be asked, ‘who do you want to live with?’  I was/am a Daddy’s girl but I knew my Dad had nowhere to go and I was scared.  My Mum I chose almost automatically but then who wouldn’t?  I was effing 6!!  Anyhoo, now, I am reaping that decision.

Since my MS diagnosis, my step family have literally walked in the opposite direction, proving what I always knew.  This leaves my mum stuck well and truly in the hole she dug for herself.  It is her Birthday very shortly and her wishes were for her to go out for a bite with me and my sister (half, we share our mum) our husbands and children.  My step dad as usual pipes up and has to make sure Huey and doey have to come along (his kids, 45 and 41).  Because of how I have been treated, I have retreated as I have no intention of being subjected to their behaviour, excuses and for it to be anything other than a celebratory birthday meal.  My mum has arranged to go out with just me, hubby and son the week after.

I will have a relationship with my Mum come hell or highwater.  I grew up without my Dad so I am under no circumstances growing old without my Mum.  

By stepping back, I am keeping the peace for my Mum, the same position I had as a little girl.  It is wrong to say nothing but the trouble it would cause is not worth it.  I have paid lip-service to my supposed family for all these years so what can it hurt?  Trouble is, now as adults it is all too clear how bad it is.  I knew the control level he had but to the point where my own mother cannot tell them what utter bastards they are being towards her own daughter then I now know what a smart insightful girl I was back then.

I was always worried about not being academic but thanks to MS it has shown me that what I have you just don’t learn from books.