Wednesday, September 02, 2009

Sunshine and clouds.

Pictures for Robert's son Stefan in Greece.

Last night just before I drifted off to sleep I shed a few tears and this morning not long after I woke up I started crying because of the pain in my legs and back and arms and the pain of my emotions.

Thought I had come to terms with this shitty disease but how can I come to terms with a disease that is visibly nibbling away at my capacity to do things and be part of the community.

Feel like I have lost so much, sometimes feel I have lost myself, but know this is not true as I am very much me still.

Even though it is difficult to accept that I have this debilitating disease but it would also take away things such as touch and sensitivity.

I can’t be touched as it feels unpleasant, instead of a light touch it feels like fiery electricity.

I can’t even touch myself as it does not give me any information, one part of my body feels like the other to me, can not distinguish one from the other.

Remember that in January 2007 I tried to masturbate and nearly flipped right out of the chair as it seemed to trigger a painful and violent spasm.

It was so scary that I never repeated the experiment again; it had not been a pleasurable experience.

Don’t know what I thought would happen, but certainly not what happened, my fingers felt like they were wrapped in Velcro and hurt me and the spasm was truly horrible.

At the end of November I came home on my first weekend leave from the RCA, the Rehabilitation Clinic Amsterdam.

On the first weekend we both wanted to make love, we started ok but then it was too painful for me, it felt like I was being rasped open with sandpaper.

I tried to relax but it did not help one little bit, I started to cry softly and Richie scooped me up and held me very tenderly.

That was the last time we made love, we were both shaken, neither of us had expected this to happen, we could both see that it was affecting my ability to walk. .

But that MS would mean it was too unpleasant and actually downright intensely painful to make love was a devasting discovery.

One which I have not come to terms with at all, in April 2007 I had to loan a hospital bed, one that goes up and down.

This meant that we no longer can sleep together as they only provide single beds, did ask if we could pay the difference but that was not possible.

Really miss sharing a bed with my darling and going to sleep next to him and waking up in his arms and sitting up and drinking cups of tea and discussing a myriad of topics.

We still drink tea and talk about many things together and we still laugh a lot together, that has not changed and neither has our love of each others company.

Even now we can be together and it be 2 pm one minute and the next it is 4 pm just like that and we never know where the time has gone.

Still feel very emotional after waking up crying like I did this morning, could not stop very easily, until I shouted that seemed to release a huge bit of tension.

Shouting out ‘’ I have been robbed’’ seemed to do the trick a my tears dried up

Been very aware just now that I need to stay focussed on the here and now, crying releases the stress and tension which is good.

Prolonged crying does not seem quite as beneficial so try to not get into that but it can be difficult.

Have to try to manage it so I get the release from crying without the grief of prolonged crying.

Today is not a pretty sunny day, not yet but can see it could happen as a cloud layer becomes thinner and the sun breaks through.

It is a unique day which I will enjoy, and especially after a shower and haircut and all the trimmings such as a foot and hand soak and when I am done 30 minutes exercise and back to bed to enjoy rest
of the day


Kris said...

Hi Herrad,

Im posting about Aspartame poisoning when I get to work today. Not sure if you've heard about it, but it's rather interesting. My dad sent me the article. Look out for it alter today.

Enjoy your day! It's feeling a lot like the beginning of fall already here in New York!

Herrad said...

Hi Kris,
Nice you came by, apartame is artificial sweetner isn't?
Knew it was not good for you, and you should only ever use a small amount.
It is for sure autumn now, sun not so warm and it rained and did not become warm again.
Oh well next year.....

gareth said...

Hi H@R, just popping by to say a big HEllO and thanks for sharing.
What a wonderfull crop of pots you got mine did,n do to well think I will do them in Bags next time or tyres. Been collecting wind fall apples so going to do a marrow apple spicey chutney thing!


Herrad said...

Hi Gareth,
Thanks for coming by and leaving a message.
Not my best day today, felt weepy all day.
Oh well tomorrow is another day.
Your marrow chutney sounds very good.
Have a good Thursday.
ps Just watched a dvd cvalled The Last King of Scxotland about Idi Amin and what he did to Uganda.
It was horrible what he did there.

robert said...

Sunshine is painting, moon light sculptur.(Nathaniel Hawthorne)

Visiting you mostly during the middle of the night, after putting Stefan to sleep (at about 10) and letting the day end, provides me with many thoughts, that remain for a long time, just as if they were 'creating a sculputur with my mind'.
Have to thank you more than my small words can do for the pictures. Have to thank you more than once again for teaching me something of life, that I did not know.
(Leaving to take a look at tonight's sculpture.)

Libby said...

hi, herrad! just stopped by to say hi, and i used to have a dalmatian dog! he was beautiful, but grew to be mean....we gave him to someone!

Stephany said...

I'm thinking of you, Herrad.

Celeste Maia said...

Hi Herrad, I missed you these past days when I was travelling. Have arrived in Madrid and found a house that has been closed for 2 months, so there's lots of cleaning to do.
But I am glad you read you are doing well. I just wanted to send greetings from Madrid.

Anonymous said...

Hello Herrad:

MS and Sex are strange bedfellows after so many years. I know exactly from where you speak regarding the numbness (down there). However, we are fortunate to still have intimacy which is better than nothing.

We have tried various things to wake up my body as well as lubricants etc. just so my partner does not go without pleasure. So I compromise - he gets some pleasure and I get lots of intimacy.

I have spoken to many couples who are dealing with one partner with MS. Their solution is the same as above. One even told me to find one place on the body that is not NUMB or painful and that becomes the sex organ or receptacle. Since I have published that, I have had alot of emails telling me that the piece of advice was a life-saver.

Our sex organs are not the only places we can have sex. That is so true of people with MS.

I am so glad you have a great partner in Richie with his understanding and love. Your writing about it hopefully will inspire others that this is normal with MS and that there are OTHER ways to be intimate.

It is cool here now - summer is starting to pass us by. I guess we will get hit with Indian Summer in late September when our regular summer gets cut short like this.

Have a nice day,

Herrad said...

Hi Robert,
Thanks for telling me about Nigel Hawthorne.
Glad you like the photo, hope Stefan does too.Have a good day today.

Hi Libby,
Dalmations are gorgeous, we had one called Peggy, she was a darling.
Still when I see dalmatins I get soft feelings.

Hi Stephany,
Thanks, am thinking about you too and your lovely daughter.

Hi Celeste Maia,
Happy home coming, how nice to make everything clean and shiny again and ready for you to enjoy.

Hi Anne,
Finding ways around the pro-blem is verey good.
Trouble for me is that it was not just numb but very painful like somene was vigourously sand pappering me.
My whole body apart from face is painful.
Its autumn here now, rain and cooler.

Thanks everyone for coming by hope you all have a good day.