Happy Daze...by Mrs W: Is this love?

Happy Daze...by Mrs W: Is this love?: A while back, when at the carer's meeting there was a lady who was from the NHS.  I think she was some sort of Neuro-Co-ordinator.  Really g...

Is this love?

A while back, when at the carer's meeting there was a lady who was from the NHS.  I think she was some sort of Neuro-Co-ordinator.  Really great fiesty lady.  The kind you would want looking out for you.  Anyway she said that when she heard the stories around the room she was amazed at the amount of love the carers had for whoever they were caring for and that she didn't know if she could do it.  My knee jerk reaction was - 'love?? no we are just stuck with it' (see I never said I was a nice person). 

Since then I have reflected on what she said. Why do we stick around?  yes, im married...in sickness and in health and all that.  In reality however I could just up and go.  What's to stop me?  I could have a care free life again for a while.  I'm certainly not here for the lifestyle...not my thing.  Nor for the money...ha ha to that one.  So why am I here?  Well, whilst I know I could not walk away from this.  Even if I lived elsewhere I would constantly be wondering how he was.  Had he taken his meds.  Has he been attending appointments.  I would want to attend his appointments with the specialist. Let someone else go instead?  no, I dont think so....too much of a control freak,me. I wouldn't trust anyone else. I would worry about my kids.  Is he still being a good Dad?  I want to make sure he listens to them and knows every detail of their lives.

The thing is Mr W is still my best friend (yes HD you havn't taken that yet) he is still the person who never left my side once whilst I gave birth (ok once to go to the toilet and even that I told him off for).  He is still the person who has loved me unconditionally for the last 20 years or so.  So now he is different but he is the only person I know who could be so brave in dealing with this disease.  Never doing self-pity (and comforting me when I wallow in mine).  He is still giving 100% of himself to this family (even when 100% is not much).

So, what is it then that makes us stick around? I guess it is love. 

p.s thank you to everyone who is continuing to read my wafflings and thank you for showing you care xx

Happy Daze...by Mrs W: Bloody drugs...

Happy Daze...by Mrs W: Bloody drugs...: So the last couple of weeks have been pretty rubbish. Little Miss W had Chicken Pox or Chicken Spox as she liked to call it. She didn't g...

Bloody drugs...

So the last couple of weeks have been pretty rubbish.  Little Miss W had
Chicken Pox or Chicken Spox as she liked to call it.  She didn't get it too bad but when she is poorly she becomes very clingy.  I quite enjoyed the first two days cuddled up on the sofa but not much got done. 

In addition to this Mr W lost his oomph.  His motivation to do pretty much anything has gone right out the window.  I hope to god it is medication related and not disease progression (surely it wouldn't kick in so quick?)

I mentioned before that he is currently doing a drug trial.  The symptoms seem to co-incide with him taking the new drug.  This means if it becomes intolerable he may have to stop the trial.  Bad for the trial organisers and a lot of hope out of the window for us.  We are going to try adjusting some stuff before we make any decisions on that one.

It's just all so complex and horrid...HD really is a piss taker!

I suppose the only good thing to come out of all this is that I sure will appreciate the old Mr W when he comes back.  Come back Mr W all is forgiven!