Saturday, November 06, 2010

A Special Time.

Joie de Vivre.

Susan Vrotsos.
Abstract expressionist artist from Winchester, MA, USA.

Difficult to describe all the sensations that I have been experiencing moving around my body just recently.

Feels like my body is burning up, other times everything tenses up so much that I get stuck in one position.

Feels liked my skin is being stretched to its limit, almost feels sometimes as if my skin were being pulled off.

Still have the  tingly electric shocks and my arms are very stiff,  heavy and clumsy and painful, feels often as if I am being hit with a heavy hammer up and down my arms

Last night lay here trying to sleep feeling like my wrists were being smashed until they felt broken and my arms hit repeatedly.

Added to that the feeling of electric shocks and the burning sensation made it very difficult to drift off.

 Have to be careful when yawning or coughing, then my body goes totally rigid and often can’t stretch my arms out afterwards without Richie giving my arms a massage.

So that he can gently stretch my arms out while holding my fingers to stop them clenching into fists and digging my finger nails into the palms of my hand and massaging the top of my arms.

Try to ignore all the sensations but that is very difficult to do, as they have become so intense, though sometimes it helps to put things into perspective.

They are all real feelings and sensations caused by the nerves not being able to transmit properly, not too much comfort when the pain of it all becomes too intense.

Although it does help my mind to think it is just the jumbled, jangled MS sensations and not reality, but it still hurts all the same.

Weird though to have so many painful feelings that are not really real just sensations triggered by garbled nerve messages.

Now that my hands and arms are no longer functioning well I have become more aware of my MS moving to another level.

Hope that I will be able to cope with all the things this MS is throwing at me, guess at some point I won’t be able to blog anymore, hope that does not happen for sometime yet.

Despite all the pain, discomfort, anxiety, and panic this is a special time, blogging has helped me enormously, being able to write about what is happening to me is important.

Meeting so many lovely supportive people and becoming friends has helped me stay strong and sharing this time with my darling Richie is very special for both of us.


Webster said...

I think that the drug Neurontin (gabapentin) will help you with these types of neurological pains. It may also help with spasticity pain. Find out more about it. Much of your suffering may be alleviated.

Herrad said...

Hi Webster,
Thanks for the advice will look it up now, wonder what the side effects are.
On Monday I shall consult my doctor about it.
Have a pleasant weekend.

Friko said...

Dear Herrad,

I've finally got round to putting your award up on my bog. sorry it took me so long.

I read about the transport letting you down. These people have no idea how much that means to you.
Bloody heartless bureaucracy!

Herrad said...

Hi Friko,
Good to see your comment, thanks for coming by.
Agree with you about the heartless burocracy.

Karen said...

Hi Herrad,
Sorry to hear you are in so much pain. There are some drugs as Webster mentioned (Neuontin)to help alleviate some of the symptoms, and also Baclofen for spasticity.

If typing becomes too much for you, there is Speech Recognition software for the computer, you speak - it types. "Dragon Speak" is one.

Take care.

JC said...

I'm so sorry this is happening to you. Webster said it. I was on neurontin .. sometimes called gabapentin. It helped me with the electric shock stuff. I assumed you were already on this.

I so hope you know that we do care. And, I so wish this wasn't happening to you.

It's all a mental game and you need to remember that you are fighting for those good days.

xo xo xo xo xo xo xo xo xo xo xo xo xo xo xo xo

Noll's Nip said...

Dear Herrad,
I heard about your blog from my friend Janet at Lilacs & Cats and am dropping by to say hello. I hope the support from others will help you and cheer you.

mortonlake said...

i take gabapentin herrad,and baclofen. both are nerve pain receptor inhibitors. actually i am taking the gabapentin for my back mainly. side effects are limited,i go to sleep if i take too many,lol.baclofen help keep the spasticity under control. both drugs are safe,and i get on well with them. im sorry love.take care,love mort xxxx

ρομπερτ said...

oh !

Patience and much strength for both of you.

Herrad said...

Hi Karen,
I am using baclofen, may need to increase the dosage and will ask my doctor on Monday about it.
I have dragon but have to do alot of corrections and it is only for text and not for navigating between programs.

Thanks for your comment it gave me a huge boost, appreciate that you all care about me, its lovely.
Will ask my doctor about neurotin on Monday.

Hi Noll's Nip,
Thanks for coming by, nice to meet you, the support that I get is wonderful and it cheers me very much.

Hi Mort,
Thanks for the info about neurotin , I do use baclofen, think I need to take a higher dosage will ask my doctor about both on Monday.

Hi Robert,
Thanks for your good thoughts and wishes.

Thanks to you 5 friends for coming by good to see your comments.
Great you all came by.

Lisa, Jack and Baby said...

Your ms sounds worse than my sister has it, but she has had her times in the hospital with it. Sometimes she has to do a daily injection to control symptoms (Neurontin?). But a couple of years ago, she heard the talk show guy Montel Williams talking about how he uses diet to control symptoms, and she researched more and now does follow a fairly strict diet. She is not experiencing as severe of symptoms or often needing to inject drugs anymore. She always has balance issues, and probably more main than she lets on (she's stoic), but she functions basically very well. I hope you find relief.

Herrad said...

Hi Lisa,
Thanks for coming by, nice to meet you, your sister sounds liek she is doing well.
Wish I still had balance issues, I have primary progressive ms, whichs means that I cant move my legs nor my torso aznd now my arms are starting to go to.
Need a computer that I can talk to so I can keelp writing, reading newspapers and surfing the internet.
Would be very interesting for me to hear what your sister eats.
Have a pleasant day.