Monday, June 15, 2009


Tomato plant.

Pepper plant.

Pepper plant.

Potato plant.

Gareth came round again yesterday at 14.30 and stayed until 18.30 and as always with a particularly good visit from a good friend the time just flew by and he had to leave again.

Very pleasant talking with Gareth and enjoying the delicious strawberries he brought with him and the chocolate.

I was advised to have a strawberry with a piece of chocolate which was very nice indeed; it was dark chocolate with lemon.

Yummy!

Certainly could cope with alot of visits like that.

I am in lots of pain today there are not too many parts of my body that are not painful, think my face and neck and my arms from shoulder to elbow are not painful.

Everything else hurts like hell, the discomfort is increased by the hot muggy weather so feel hot, sticky and longing for a breeze.

Trying to not focus on my pain but it is difficult to do so keep spending to much energy on it and have to adjust my focus time and again and tell myself to think about other things.

This morning realised again how little movement I have, can only lift my head and my arms.

If I want to raise abit of my body I need the handle that hangs down over the bed then I can get my shoulders off the bed.

Tried to see if I could do this on my own without the aid and could not do anything but lift my head up.

It is really strange to find myself in this situation as it is something that I have read about.

Did not expect that I would be experiencing it myself, sadly, so now I know what it is like to be very handicapped and 100 % dependant on others.

And that is not easy at all, in fact it is bloody difficult and for all concerned, took me ages to get used to the idea of someone else washing and dressing me.

Still do not like it at all, the one good thing for me is that Richie does it all and he is so good that it is much less intrusive than the agency carers

Now that I have personal experience I know how one manages, you just do, you just get on with it and hope for the best of times even in this ghastly situation.

I have managed by being myself and staying that way too, think I used to worry that everything even that would change drastically and unrecognizably.

The changes to our lives have been immense; think we are still reeling from the speed and the intensity of the progression of the MS.

The biggest frustration is not being able to do anything to change what is happening, think that is part of our conditioning.

We tend to think that anything can be solved or cured or mended, so something like MS is a terrible shock to everyone coming into contact with someone with MS.

Guess that is why some people can’t bear to be in touch, it is not they suddenly don’t like me.

No it most likely is fear and the realisation that there is nothing they can do to change things, plus the fear of confronting something that is scary.

As if there was a risk of getting MS just by being near to someone with MS, as if proximity alone would be enough.

Have lost a few people that I thought were good friends, they have all not said anything just do not get in touch anymore.

My email address is most likely on the blocked list so there really is nothing that I can do to change this state of affairs.

It is very sad.

Think that it is best to put away all ideas of changing the situation either of the MS or the ex friends and focus on relaxing and enjoying the moment.

Bloody hard to do especially today

9 comments:

Rain said...

Hi Herrad. You know, when I suffered the burnout and all the other stuff during the last 6 years, a lot of people who I considered friends did the same to me. They couldn't or didn't want to see me anymore, it hurt like hell and I was terribly angry with them. But in hindsight, I'm better without them. I look at them as superficial morons, I see better now that I've gone through what I have for sure. My eyes are open and I certainly don't want that type of person as my friend.

Hope you have a better evening,
xx

Herrad said...

Hi Rain,

Thanks for your comment, you are absolutely correct about being better off without superficial 'friends'.

Have a good afternoon and evening.
Love,
Herrad

steve said...

BR and I have lost our fair share of friends to his MS. It boils down to society's discomfort with illness. For many in the gay community, illness brings back memories of the days when AIDS was a death sentence, and friends were dying every week. That's a pretty big psychological hurdle to overcome.

So we forgive those who are unable to join us on this journey, and welcome friends who can see past the disease to the person inside.

Libby said...

herrad..."plus the fear of confronting something that is scary."
very true, a lot of people can't look something like this in the face. Especially when they see you and realize "Hey! What if that happens to ME??"

Webster said...

Herrad, I am sorry to report that I am one of those people you speak of. There was one person who volunteered at the MS office. I knew her, but we never were close. When I heard that she was staying in a nursing home, after her husband left her, I did go to see her. Once. It was so difficult for me. She could do nothing but listen to radio, or less often, watch TV.
I was terrible at keeping a conversation going as we had so little (yet so much) in common. All I could think of was "there but for the grace of God go I." I knew I was looking at my future.

I mean, entering the room, and seeing that she could only move her head, What answer do I expect from "How are you today?" My regret is that I didn't have the strength, emotionally, to visit her again.

Continue to E-mail your (former) friends. You still have much to offer, and they need the reminder, whether they respond or not.

Stephany said...

Hi Herrad,

I know what it's like, people and friends and family drifting away, that happened with regard to my daughter. At one point, my mom asked me to only email if is was "good news". So I stopped emailing. I don't think ppl understand grave and horrible circumstances or just are "out of sight out of mind" category. Alone in these times like yours are left for one or 2 quality people in your life or none at all in my opinion. I spent many years alone and now out on dog walks have seen some ppl, who really never did call during the shitty times yet knew it was happening. (and have nerve to ask now and act all concerned, so fuck em)

ack a rant! have a nice tuesday, I'm glad you had another nice visit, and hope that the pain gives you a break.

Herrad said...

Hi Steve,
Guess you are right it is all to do with the way illness is viewed.
If it can be fixed good otherwise hide it and don't look.


Hi Libby,
You are totally correct it is too scary.
Certainly is for me too.


Hi Webster,
Thanks for your comment and advice about the old friends.

Hi Stephany,
I think the out of sight out of mind policy happens alot.
Guess its self preservation.


Thanks for visiting and commenting.
Have a good day.

Love,
Herrad

steve said...

Wait a minute. Did you say you are relaxing? Oh no, ma'am.

Here's a little exercise video to get you back to work. You can skip the leg parts.

-drill sergeant steve

Herrad said...

Hi Drill Sergeant Steve,

Relaxing!

Done my 30 minutes of arm exercises and off to use the motomed for 30 minutes leg exercise.

Love,
Herrad