Saturday, May 07, 2011

Determined To Make The Best Of Being Alive.

Homage To Accountants.
Pedro Friedeberg
The days are going fast as they always seem to in the spring; the days are getting brighter and longer.

Nights are still long for me, luckily I have been sleeping well, but there is still too much time to think about my condition.

When Richie turns the light off, often that seems to switch on my thoughts, this is when I focus on things I think I should have done.

Often these are almost fabricated worries, as if to keep me thinking about something other than my MS.

In the mornings feeling my legs spasming as well as the painful stiffness in my arms triggers off gloomy thoughts.

I hate waking up and being confronted daily with my stiff arms, my pain, everyday it hurts to realise again what I have to live with.

Lying here this morning half awake, aware straight away what my limitations are these days is not easy for me.

Being able to pull my head and a bit of my shoulders off the bed using the trapeze above my bed is a huge achievement for me.

Not being able to do things like sit up, or hold my torso upright or even eat my food is very difficult for me.

I do my best to rationlise and am determined to make the best of being alive.


Tracey's Life said...

Sorry to hear of your stuggles Herrad, Are you taking Baclofen? I know you don't want to consider surgery, but perhaps a Baclofen pump would help you as it has helped my friend Sharon?

Stan said...

"I do my best to rationalize and am determined to make the best of being alive"

I would expect nothing less from you my friend, even as the body wains your indelible spirit shines through ever lasting.

It is oh so difficult to place in mere words what a heart yearns to speak; but I want you to know that you are loved & cherished by so many Herrad.

Your journey is more than just an living example & inspiration; but a testament to your personal courage, passion, fortitude, & generosity you have so kindly given unto others without pause or reservation.

I pray for you peace & comfort in this time. This situation pains me to no end.

You are always in my hopeful thoughts.

JC said...

HUGS to you my Dear One ...

Herrad said...

Hi Tracey,
Thanks for your visit and kind comment.
I am on baclofen, you are right I do not want surgery.
I am curious though how it helps your friend.

Hi Stan,
Lovely getting your beautifully supportive comment, thanks for coming by.
I hope you are doing well, I often think about how you are.

Hi JC,
Thanks for your lovely comments.
Hug to you too my dear friend.

Thanks you three dear friends for coming by, your comments are much appreciated.
They gave me a boost to see them.

Webster said...

Hi Herrad, I know you don't want to go through a surgery, but I agree with Tracey - a baclofen pump may be exactly what you need. It will give you a continual dose directly into your spinal column, thus requiring much less than if you were taking it orally.

I have heard only good things from people (in support groups) who have had it done. And as your MS has already progressed to the point where you can barely move, you have nothing to lose but the pain of the spasms.

But that's just my opinion. And knowing how fast things move in the Netherlands, you may well be 70 before anything gets approved. Frankly, I'm surprised that your neurologist hasn't already suggested it for you, but then maybe he has but you nixed it straightaway as it involved surgery.

Look out for your comfort, Herrad. Much suffering is optional, as seems to be your mantra when trying to live each day to its fullest.

My love to you always.

Herrad said...

Hi Webster,
Thanks for your visit and supportive comment.
I really do not want or need a baclofen pump, being woken by a spasm or having the odd one during the day/ night does not need surgery.
My lack of muscles is two years in bed while the pressure sore healed.
My ms is progressing as my arm function gets worse.
Baclofen won't stop that and painkillers do not do much for nerve pain.
I do not see a neurologist, could see no point to see someone who could or would do anything for me.
Not even any info when he told me the diagnoses.
Feels better not seeing that rude, insensitive man.
Hugs and love.

Tracey's Life said...

Herrad, the Baclofen pump is attached to the spine and releases a controlled amount of Baclofen throughout the day. The meter for the pump is in the abdomen. Someone comes out once every six weeks to refill the meter. That part is done through a needle.

I can attest that this did help Sharon with her spasms and her spasticity issues. She was curled in a fetal postion before she had the pump.

It is not for everyone and each person would need to decide if it was right for them.

You should be able to find more out if you google Baclofen pump. Good luck to you Herrad

Herrad said...

Hi Tracey,
Thanks for the information, I will google that.