SV-Wolf's Bike Blog

[Sev]

Ohhhh, I hate reading stuff like this.

There isn't much that anyone can say that won't ring hollow right now, or seem like just a series of words that have no relevance to your current situation.

But if you ever need someone to talk to, or just someone to talk AT all of my contact info is down in the bottem MSN, AIM etc. I don't know what else to say, but I'll be thinking good thoughts for you.


You're one of the good ones.

[jstark47]

There isn't much that anyone can say that won't ring hollow right now, or seem like just a series of words that have no relevance to your current situation.

SV,

Sevulturus is right, and I won't try to add words much. I lost a Significant Other to AIDS in 1995. It took 3 years to kill her. It was like watching a train wreck in slow motion that I was powerless to influence.

Di will get through this and find peace and dignity in death. And you'll eventually come to a time of calm also, with your mind and spirit battered but intact.

Jonathan

[BuzZz]

I have no answers or sage advise to offer. It's beyond my scope to even fully comprehend what your both going threw right now.

But I am truly sorry and admire you both for your strength.
You will do the best that you can. And it will be enough.
I am quite sure of that much.

All our best wishes are with you both.

[Gummiente]

Like the others who have read your blog, I am rendered speechless. I have no words to help ease your pain and I can't even begin to think of how it must feel to be in your shoes, but... for what it's worth I think your wife is one hell of a fine lady with the heart of a lion. And you, sir, you are one hell of a man. I'm not religious, but I will pray for you and your wife.

[MASHBY]

Hi SV
Been off the boards for a while and just come across you post.My thoughts and prayers are with you and you wife.
Cheers
Matt

[zarakand]

I'm very sorry to read what you're going through. I can't begin to imagine the anguish it must be causing you. I hope you stay strong, and I know everyone on the board is praying for you.

[sv-wolf]

Thanks everyone, including those that pmd. I very much appreciate your thoughts and good wishes. This often feels a lonely old road. Contact from other people always brings a little bit of relief. You're a great bunch.

Richard

[blues2cruise]

Please let us know how you are doing?

[sv-wolf]

Please let us know how you are doing?

Hi Blues.

Thanks for asking. The answer is, not so good. I've been an emotional wreck for the last few days. I've no idea how I would cope if it weren't for all the help I'm getting from friends. I knew it would get worse but I had no idea it would be like this.

Di has not eaten now for over a week. She is getting weaker by the day. As her needs increase, her ability to tell people what they are diminishes. The primary stress for me is no longer the lack of sleep and the tedious slog hour by hour of looking after her, but the distress of seeing her discomfort and hearing her whimpering and not knowing what to do.

All this is, of course, on top of the realisation that there is not a lot of time left. Until recently I'd been focused on making Di's life as comfortable and enjoyable and meaningful as possible. She was still here and looked like continuing to be here for the immediate future. There were still challenges, moments of creativity, practical problems to sort out together, things to do to entertain ourselves. That's all over now. We are now playing a waiting game. Everything is on hold. Friends come round. We talk of funerals and negotiate with undertakers. Life is very surreal.

The first physical symptoms of the MND appeared in September '05 but the disease had started to affect her long before that. Back in the summer of '03 she suddenly became much more emotional, much less able to cope with stress than previously We spent over a year on a huge emotional roller coaster. I had no idea what was going to happen next. The tiniest disagreement or disappointment would result in huge outbursts or storming rows. She kept on thereatening to leave me.

Once the disease was diagnosed we both realised what was happening and that helped us come to terms with it - big highs and lows are part of the condition. Now the highs and lows are related to her immediate physical needs and are overwhelming her. To hear her whimpering - so unlike her - or becoming frantic with anxiety is just unbearable, especially if I don't know what it is about and she is too emotionally overwrought to tell me laboriously using the letter frame.

She also has to keep control of everything. So every minute detail has to be attended to or she panics. This is another feature of the disease. When you have lost the ability to move, the only way you can stay in touch with who you are is by trying to control things through other people. This is exhausting for her as well as for me. It's exhuasting for me because I've ceased to have a mind of my own and I'm merely responding all the time. I have huge conflicts about meeting her needs and meeting mine.

My mood swings around like cray too. Sometimes I listen to myself being very practical or even upbeat! When I go out for a ride with friends, which I still manage to do once a week, most of the time it's as though nothing special were happening in my life. Other times, I am just a wreck. I break down regularly now on my own or with a few close friends. Sometimes I feel rock solid and able to manage well (if a little mechanically) - I'm usually good in a crisis. At other times I just go to pieces and have to rely on friends to prop me up.

Last night I managed to get three hours sleep and haven't had a chance to rest today. That just adds to the problem.

Well, that's how it is at present.



Take care blues, and thanks again for all the support..

[Loonette]

My heart aches for you and for Di. I truly wish there was some offering I could make that would ease your pain. There is so much going on for you right now - I can tell that it must be overwhelming at times. Like Blues and so many others, I think of you often. Thank you for staying in touch with us. We care about how you're doing.

Cheers,
Loonette