Sunday, May 24, 2009

Life has changed so drastically that I can not contribute anything now to my daily care apart from doing the arm exercises.

It is tremendously frustrating to not be even able to squeeze toothpaste on to a toothbrush or pluck a hair out of my chin or file my nails.

Hate not being able to do anything for myself not even little thing, have lost sensitivity in my fingers so can not feel things and therefore do not get any information anymore through touch.

Do still feel pain, have a lot of pain and discomfort in my hands that are recently cramping up more which means a constant battle to hold the mouse.

Other times my hands are in constant pain with every now and then an electric shock, when it is hot weather they feel like swollen sausages and are quite painful.

Not easy to assess what is happening with the progression of MS, it is not easy to live with it, it tends to burst in uninvited and squat your life forever

Really hate being so dependant, gets me very frustrated and cross, emotions I try my best not to let fester by shouting and swearing when I am in the bathroom.

Always feels better after shouting it away from me, seem to remember that the Jungians recommend screaming as therapy.

Don’t really need a guru of whatever persuasion to tell me stuff that is logical, guess that is why I am never attracted to self help books these days.

I am already helping myself with help from others and giving help to others too so a mutual aid society which is how the planet really needs to be organised.

Shame that the same sort of time, personnel and money that goes into making weapons of mass destruction can’t be used to make life better for all people.

Why spend so much time and money working out how to kill people, seems an odd focus when doing good and being helpful to your neighbours is less effort and could produce a better effect and be pro people and pro planet.

It is a sad fact that there are far too many people suffering from MS and other progressive diseases.

Which could be different if resources similar to what is put into arms research or space travel were put into medical research (not by pharma companies) and ways of cultivating your own food.

Real shame that killing people is still the favourite pastime for our rulers and getting us all worked up about potential threats to us when the biggest threat is us. So that the killing can be justified.

If only all the time, effort and resources were being used for good things we would all be happier and healthier than we are now.

To much concentration on competing for the biggest slice and forgetting the benefits of
co operation which is pro people and pro planet.

When the bees die and all the rivers and seas are polluted we can not live on money and possessions.

That’s why we need to get together to change things right here and now starting in your own neighbourhood.

Here’s hoping for a better life for all and Yes We Can Do It!


FrankandMary said...

I believe it is impossible for anyone who does NOT have a progressively debilitating diseasee to understand what the process, and what LIFE, is like. You can't guess at the accumulating effects of the disease on someone else. But, honestly, you seem to handle it better than many, even when you don't feel you are handling it well. I've often touted the benefits of primal screams; I think they are marvelous.

I cannot say I am ALWAYS against war, but I am ALWAYS for stem cell research, which I fully believe will one day cure diseases such as MS, Diabetes, Cancer & Parkinson's
(to name just a few). ~Mary

Herrad said...

Hi Mary,

Thanks for your comment, primal screams really do help me.

Gets the dogs worried and they can never understand that by the time they see me again I am smiling.

I do ok I guess but have been having alot of crying jags even found myself saying 'it's not fair' that I have MS.

Strange when I don't believe you can look at MS like that.

Really hope they find a cure and failing that drugs that can prevent the disease progressing.

In my dreams they do and I can haul myself out of the chair again.

Amazing how little I would settle for if only I could have some function back.

Guess I am not the only one thinking like this.

Have a good day.



JC said...

I know I've told you this before, but I wish I lived closer ... Oceans away .. I'd be over there making you laugh and telling you stories. I'd probably scream with you.

There's nothing I can tell you to make this better.

Every morning I wake up and just for a few minutes, I feel great. Than the old body starts in.

I've been having lots of headaches and have not been able to drive due to them. Since my coma, I've had trouble with my whole right side. It has too many problems to go into but I lost who I was and woke up another person 3 years ago.

I couldn't move a thing. Got a lot of it back. At the six months point, I was almost back to old me. For about a year I was ok and then the troubles started.

Now, I get what I call 'attacks' where my whole side goes .. weirdness to say the least. It's just what I live with.

And, even though I have about the nicest husband in the world .. except for yours of course, he still doesn't have a clue what my life is like.

I tell people that I survived the coma and I'm left with all the 'remains' of it.

Not that I'm complaining but somedays I do cry for no reason .. if just that everything is so hard.

I hope for today that you can find some joy in the simply things.

And, I agree about war .. makes no sense to me but some people are just mean and weren't raised by nice Mom's like me (lol).

People ask me how I did it ... relearn to walk after I woke up. Cause let me tell you, I was a mess. I just keep going. No matter what .. it's what I do.

This is way too long ... but, baby I'd be there with you if I could.

Herrad said...
This comment has been removed by the author.
Herrad said...

Hi JC,

Thanks for your sweet comment.

Guess only thing we can do is keep going.

It is difficult everyday to keep focussed on the positiive.

But we all do.

Shame we are so far apart but brilliant that blogging has brought us all closer.

It is a pleasant day here hope you have a good day.



Taxingwoman said...

Hi! Herrad In your corner of the world you do good, by wishing for good. If each of us tries for good it might become contagious.

Go ahead and enjoy that scream/swear session . You deserve it

Stephany said...

The loss of one's life as they knew it is an enormous thing to process, and primal screaming and sobbing is par for the course. I used to wake up wailing in the night when my daughter was in the hospital. I knew it was loud because it woke me up, and the dog had a look.

Herrad it is not fair. No one deserves this and you didn't choose it, but you sure are inspiring others by way of how you are coping with it. Your honesty here is helping others understand the real life behind the closed doors of people living with MS, and that IS a service to this world!

I hope you both have a nice evening, I wonder what Richie is cooking for dinner?

Herrad said...

Hi Carole,

Hope doing good becomes very contagious.

I am off to the bathroom shortly will enjoy the scream/swear session.

Hi Stephany,

Thanks for your comment it helps make sense of the senseless.

Am having a good day, Richie is making pasta that is all I know so far.

Have a great afternoon and evening.


gareth said...

watcha H@R just popped by, I to do a BIt of the AAAaaaHHHHH thing and find it helps. So agree about the cash thaT IS CHUCKED at Armstrade its just so unbelibvable but more and more people are taking direct action against this Obscene Trade


Libby said...

herrad--"making sense of the senseless"...oh how i wish...but i know, Mom always told me when i was little 'if wishes were horses, beggars would ride'...good one, Mom! useless, but good!

Lille Diane said...

Your spirit is beyond amazing. It reached right out and hugged me. I cannot help but love you, admire you and see your sparkle in between screams.

Thank you for your blog. The world needs to hear your voice, Herrad.

azoyizes said...

I understand and can sympathize with all you are saying.

I know how hard it is to have to ask someone to help you with just the basics of self-care, and how frustrating it is not to be able to do it yourself.

I also agree with what you said about all the billions of dollars going to fight wars that could be going to research medicine and cure MS and a lot of other diseases that need to be, if not cured, then at least made more tolerable.

I don't scream, but I do like to slam things down or slam doors and drawers. Sometimes I have to use my butt to do it because I can't get enough power in my arms, but it sure feels good!

The best to you, Herrad. You are an inspiration to me.

Love, maryann

Herrad said...

Hi Gareth,

The arms trade is obscene thanks for the link we will t ak e a look.

Hi Libby,

Thanks for your comment and your visit.

Hi Lille Diane,

Thank s for your sweet comment Richie got a tear in his eye when he read it.

Hi Maryann,

Thanks for your your empathy and understanding.

Love to you all,

Cathy said...

As for war, swing over to my place, read it, leave your mark. As for those dreams - thought I was alone with them, how arrogant of moi! In mine I can skip, run, even fly. I have feeling in all appendages! Amazing. (I have periph nueropathy, no biggy) So it's not fair eh? Good, at least you're honest. What's fair about anything when you look at it thru a haze of tears? Can I offer, the times I indulge in self-pity are very beneficial, I use that time then forget it and go about living with limits. Nothing wrong there, and I have a feeling you know you don't need anyone's permission to just say "F this, I'm hurting, I'm crippled here, cry for me damn it!" When you have your next primal scream, do it in public see what happens. And people call US disabled! Holy crapola.

kelly said...

I believe that we are put on this earth for a reason...your reason for being is to teach..your spirit shines through...your words speak for themself...your wisdom should be heard everywhere..sometimes we all forget the important things in life, thank you for reminding me of that.. God bless you..and I wish you all the best.

Joann said...

WOW! You're amazing!! My first time at your blog, and I totally agree with putting the money towards research instead of to this war. I mean I know we need to do what we need to in order to keep this country safe, but just a portion of those funds would do wonders in MS research, and others!! Hugs to you, you are very brave!! I truly mean that!

jack69 said...

I am not a word master, so I take Mary's comment. I tell her she posts above my pay grade, but comments so well. If you can accept the word admiration, please do. You have OUr admiration. Sherry who is on her computer across the table is reading as I do. Both are blown away. The gist of Mary's comment is how I (we) feel. You give it your all. What else can one do?
Jack & Sherry

Gerry said...

I came by way of Mary's blog. I thought she was good to introduce us to you this way. I go to another blog whose author has MS and I have marveled again and again at the mountains she has to climb. She also talks about the electric shock and fingers swollen like sausages and not being able to pick things up. I think what is this monster MS? She says she knows what is in store for her because an older close relative died with it. But what is so marvelous about her and you is that you are so human, the humanness of you both shines through to me and draws me back. I tell her I am attracted by this spirit inside struggling for ways to survive the limitations, and the struggle is what inspires awe in me. When the humaness emerges I know that it has cost a struggle, so it is most valuable. Gerry

C said...

hi hon, came to you from frankandmary... she is a wonderful woman, that mary... i am so sad and so sorry to hear about your MS. i wish to God there were a cure for you and others like michael j. fox who has parkinsons. may i suggest that you get his new book out, it will help inspire you, as you seem to have the same spirit and fight and optimism that he does. you are right, we all have to help eachother. and we SHOULD be spending this worlds money on better things than weapons, bombs, luxeries forthe rich, and nuclear shit that will only work against us in the end anyway. i am with you on why cant we focus our monies and talents on research for the betterment of us, as a human race. it makes me sick how much money is wasted in our world. SICK i SAY. God bless your little heart for what you live with everyday. i have fibromyalgia and i have moments of feeling sorry for myself when i cant function out of being in too much nerve pain. then i read your blog and feel ashamed for such thoughts. you have inspired me and i want to thank you for that. you are here FOR a reason and what ever your spiritual beliefs are, i know in my heart you are being used to give hope to people like me, and i am just one. God must know you are strong enough to bear this burden, and you will not be unrewarded. thank you for sharing yourself like this. i will pray for you to continue to have hope, for without that, we have nothing.


Ana said...

What else can I say after all these comments?
You are really inspiring lots of people.
Thank you for having such a great spirit.

Julie said...

I am here from Mary's also and like another said don't have her power with words but am glad to find the link here. Screaming works for me also.

Rebecca Anne said...

I come by way of Mary's journal and I'm glad for her map to your journal. There is so much wisdom found in your entry and then in the comments posted by everyone I'm not even sure what else to say beyond I know my outlook on the day is better, and more compassionate to the struggles of people around me. I thank you for that.
Keeping you in my thoughts,

Angie said...

I'm here by way of Mary's blog too.

Here I was thinking only me swears and roars and throws things. I'm not a horrible person but I NEED to let off steam sometimes. I would slam doors only I can't reach the darn things once I have heaved my wheelchair through them. So I roar. Never mind primal screams in the loo, my roars are real, toe curling, dog scaring, LOUD "grrrrrrrs" that last as long as my breath does. Sometimes they are a confection of the most colourful language you never heard outside the barrack room! Where DID I learn such language!

Why do AB people tell me this does no good? It does.

Why do AB's refuse to believe how cold it can get being pushed in a wheelchair?

Why don't shop assistants ask ME for the money?



Tina said...

I would like to see the rate of dx of this disease mapped out across the globe. It seems that every month, I hear of someone else in my area that has been dx'd. And I do not believe that is a coincidence.
i am new to your blog, but I enjoyed this entry very much.

Herrad said...

Hi Cathy,

Thanks for coming by, l just went to yours excellent piece of yours on war.

Hi Joann and Hi Kelly,

Thanks for coming by your words have given me a boost.

H i Jack69 and Sherry,

Thanks for your admiration

Hi Gerry,

Thanks for seeing my humanity

Hi C,

Thanks we inspire each other

Hi Ana,

Your words are an important support

Hi Julie

Let's scream together

Hi Rebecca Ann,

Thanks for your supportive comment

Hi Angie

I share your GRrrrrrrrrrrrss

Hi Tina

Thanks for your comment I too don't think all the new cases of MS are coincidental.

Thanks everyone for co0m0ing by it is very appreciated.



Maire said...

Herrad, thank you for being able to express so honestly what is sometimes so hard to say when you are feeling sucked into that vortex of chronic illness & pain.
Take care

Herrad said...

Hi Maire,

Thanks for coming by really appreciate your comment.


Beth said...

Stopping by via Mary. You are a remarkable lady, although I get the impression you'd probably deny that. I wish you strength. All my best, Beth

Herrad said...

Hi Beth,

Thanks for coming by its very nice to get your comment.

Really does me good hearing from others.


ps you are right I don't think I am special I am just me.

Oz Girl said...

Hello Herrad, I'm stopping by via Mary also... and I would be honored if you could include me the next time you feel like screaming. I will agree with you wholeheartedly, it is NOT fair.

Like you, I wish our gov'ts would put even half as much effort into peaceable ventures as opposed to the wars we always seem to be involved in. Such a sad waste of time, of $$ and of course, human lives.

I am such an independent person that I would find it very difficult to ask anyone to help me, so I feel your frustration at not being able to perform simple tasks. I just cannot imagine - positive thinking can only take one so far, and there will always be those days when we just want to crumple up and cry.

Oz Girl

Herrad said...

Hi Oz Girl,

Thanks for coming by real nice to meet you.

Beautiful photos on your blog will go back for a longer look was curious who my new follower was.

Have a good Saturday.

suejan said...

I feel very frustrated at times-very today. My new scooterpackedup in drive-thirdtime stopped. Firm I bought it from gone out of business so I now have to pay labour. Engineer was supposed to have fixed it. Luckily my neighbour could pull me into spare one so I weent via busto market plants. Goodneess know where my Home Help has filed bill. To cut a long story short called my original engineer and itssd a plug to tiller - other chap was useless. I will have to write off the money he had. Today though I would go via two buses to a cheap nursery for some more plants - set off and slipped forward in seat - wrong trs. No carers now so come home as dare not risk it.Rang engineer,parts arrived so he's going to fix it Monday.That one is more stable

You are right my garden is really lovely-you have inspired me to put some pics on site. It's my hobby. TV is supposed to be featuring it.

Herrad said...

Hi SueJan,

Thanks for coming by I am looking forward to seeing your photos of your garden on your blogf.