Saturday, May 23, 2009

It is a hell of an altered life since the MS diagnosis, discovering that life is suddenly very different like Kimberly at My Journey With MS.

I am also finding it difficult to come to terms with the fast progress of the disease.

Yesterday felt really sad a few times during the day and I cried again after waking this morning from a deep slumber.

Got quite concerned at all the tears in the last few days until I realised that it was no wonder that I am crying alot, it was 9 months on Thursday that I have been in bed.

Noticing last night how very difficult it is for me to sit was a shock at seeing how contorted and somehow crunched up and hunched I looked in the shower chair.

It was not very comfortable sitting and using the laptop while on the shower chair.

The angle I sat at was not good for me, recently after going to the bathroom we have our meal and then I use the Motomed to exercise my legs.

After that Richie puts me back to bed so every day I get a couple hours out of bed and sitting differently.

Going too really up the pressure this week on the responsible people to ensure they get the adaptions right on the chair so that I can sit safely.

After seeing how I am sitting makes me think that I will need not just an adaption but a different chair.

Time I think to hand back the Speedy, my pride and joy, really lovely nippy machine plus looks so smart.

I have enjoyed it tremendously zipping around the market and the Vondelpark as well as local shops, quite a few had good access and all are very helpful and friendly.

Think that it is time to get realistic and accept that I will never use the Wolturnus wheelchair or the Speedy again.

Then it will be time to see what sort of new chair I need and what is available.

I wonder if there is a power chair that I can operate and also someone else can also operate on days that I can not.

Very curious whether anyone knows or has heard of a power wheelchair like that.

Once my tears were dried this morning I felt better, feel abit sick all the time from the antibiotics.

Richie took a urine sample round to the doctor who found that I have a bladder infection, so have been taking antibiotics since Wednesday.

One more tablet tomorrow then the course is finished and the nausea and extra feeling of tiredness will be over.

Meanwhile it has turned into a scorching day, as soon as I have posted will get Richie to hoist me out of bed and into the shower.

Be nice to get all that done earlier rather than waiting until later and perhaps I will be able to relax better.

Maybe even a moment on the balcony to enjoy the mild weather and feel the warm breeze.

Happy Days.

Hope it is a good day for everyone.


mortonlake said...

i bet i crash,lol.sorry not commented lately,but i get in a loop with explorer.anyway,there is over here a wheelchair that can be operated literally with one finger,i saw a badly disabled lady using it in supermarket.she must have ms,or motor neurone,a joystick controls speed,forward,reverse,turn.shame she ran over my sodding toe with it, was damn heavy.take care herrad,remember MS is full of surprises,never say mort.xx who will post this and spend the next 15 minutes swearing lolol

Herrad said...

Hi Mort,

Really good hearing from you, thankss for the info about the chair you saw in the supermarket.

Have a good evening.

Anonymous said...

Oh how I wish some of the things available here in US were available to you in your country and how some of the things available in your country were available in the US!

Here is Hoveraround which can be operated with one finger, one hand, and adapted to be able to use forehead to make it go. One of my patients uses his forehead and it is super!

Herrad said...

Hi Anne,

Thanks for your comment and the link will have a look now.

Have a good afternoon and evening.

Hope your sweet doggie is doing well?



Stephany said...

Hi Herrad,

It's hot and sunny here, I hope you feel better from the antibiotics soon.

I would cry too if in the house for 9 months, it's OK to cry and get mad about that!

I hope you got to look from the balcony, I have been wishing you could do that.


Herrad said...

Hi Stephany,

It has been a pleasant day here and tomorrow should be the same.

Saw the balcony yesterday it is even nicer than in a photo.

Have a good afternoon/evening.


Vicki said...

Beautiful pictures. Sorry about the Speedy. I remember how thrilled you were to get it.

Have a good shower and enjoy the view. As always, I am thinking of you and wishing for the best.

Libby said...

herrad, as always, the pictures are wonderful!~
i just found out that one of my childhood friends' older brothers lives in amsterdam, and loves it!

Herrad said...

Hi Vicki,

It is sad losing the Speedy but have to be realistic and as I want to go out need to start thinking about other options.

Thanks for coming by it is always very nice to see your comments.



Herrad said...

Hi Libby,

How lovely to hear from you hope you are doing well.


steve said...

Hi Herrad - I don't have any specific powerchair recommendations. BR's chair is no longer being sold. I can suggest some features that we have found very useful:

1. Detachable controller. It'll feel a bit like you are being taken for walkies, But when you are truly unable to control the chair yourself, you'll appreciate the option to ask for assistance.

2. Adjustable recline. Even just a few degrees makes all the difference when trying to keep the sores away.

3. Extendable leg rests. BR's chair doesn't have these, and he really wishes it did.

4. Safety lights. If the sidewalks are as bad in Amsterdam as they are in other low-lying cities like New Orleans, I imagine you will be sharing the road quite often. Stay safe and visible!

5. Tight turning radius. Nothing worse than getting stuck in a tight space.

6. Stable enough for Richie to straddle your lap and give you the hug of a lifetime.

Do you know of any local places that rent or sell powerchairs? If nothing else, they should be able to guide you away from models that don't hold up well.

BR and I are sending healing energy around the globe and straight to your ass.

Herrad said...

Hi Steve,

Thanks for the information on those important features.

The detachable controller is great did not realise there was such a thing.

Thought would have to go for a more passive chair right away.

A detachable controller is the answer brilliant.

Big hugs to you and BR,

dgewhitney said...

Hi Herrard

First time on your blog although I see your name often on other blogs I read.

There are a lot of power w/c's out there that have the ability to have an attendant drive them. There are also chairs that have various controls for driving. From head arrays, to small movements for driving etc. I would be happy to give you more info. Just send me an email


Herrad said...

Hi Gretchen,

Would love to email you for more info but you do not have a profile.


dgewhitney said...
This comment has been removed by a blog administrator.