About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Sunday, July 05, 2009
Having a quiet day after being woken up at around 8 am by enthusiastic people arriving at the Fijnhout theatre across the road from us.
As they are actors, their voices carry along way so we could hear every beautifully pronounced word.
All was punctuated by theatrical laughter it was a wonderful performance worthy of a bigger audience than just the half a dozen apartments who got the benefit this morning.
Had to remind myself this morning that it was a treat when I got so cruelly woken up.
If the actors were not enough, the dogs heard another dog, I did not, but that of course was not the deciding factor as just as soon as the actors stopped braying with laughter the dogs started barking big time.
Luckily Richie managed to persuade them that it would be better for them to shut up which they just could manage to do.
It is another hot and stuffy day, the sun is mostly behind the clouds but it is there as you can feel it.
The first thing that I say to Richie in the mornings lately is please turn the fan on before I can manage ‘Good morning’.
Wonder how other people with MS are feeling today, I am feeling vey limp and rather looking forward to the cooler evening.
My hands are pretty useless in this heat every time I stop doing something my hands clench up into a floppy fist.
Everyday as it gets closer to the time when I get hoisted out of bed, my fingers start to bunch up and it becomes more and more difficult to do anything.
Have been very fortunate that I can sleep alright these days which is brilliant as did not enjoy waking up regularly at 5 am and having to try to lie quietly for hours until Richie woke up.
What really annoyed me about waking up so very early was hearing the pigeons try and make a concerted effort to work out how to use the bird feeder.
The last time I heard the pigeons try to climb onto the bird feeder they just looked at me and that was it until the dogs came trotting in and sorted it right away.
Of course that sort of stuff gets rewarded so they rushed off delightedly to collect their biscuits.
The dogs love their biscuits, used to be made by me but Richie does it now which I still miss doing so much.
It's a very rewarding thing to do as homemade are so much better and you know precisely what you have put into them.
Ours are a mixture of flour,oats, baking powder and olive oil and chopped up peanuts mixed and gently kneaded into one lump and pushed onto a baking tin and flattened and pre-cut into pieces and put into over for 30 minutes on a slow cool oven.
When they are crisp enough they are ready and need to be left to cool, usually take two out to cool off and give to the dogs that have been waiting patiently, usually n front of the oven.
The recipe is
Dog Biscuits:
1 mug flour
1 mug oats
1 mug chopped up peanuts
1/4 mug olive oil
1 spoonful of baking powder
mix oats and flour
add oil and mix throughly adding 2 spoons of water if needed knead slightly and form into a ball and push into a flat tin, push flat with hand rolling pin.
cut into squares so when cooked can be broken up into biscuits
place in cool oven@ 150 degrees
for 40 minutes or until cooked
they must be crunchy, can be baked twice.
cool and break up and keep in air tight tin.
At the moment the dogs are off monitoring what Richie is doing, and what he could maybe be doing if they only used their thinking capacities.
Wish I could use my capacities better than I can;wish somehow I could still work but I keep forgetting that I am a cripple, a bona fide poor sick person and as such will never get harassed again.
Unless their computer system goes very strange I will never be called up again and there will be no more work for me.
Something that was a great relief to me when I was at home just after my shock diagnosis in 2006.
It is pretty amazing to me now that it is only a mere 3 years ago since our lives got turned upside down so drastically.
Wish now when my work put me on inactive that I had refused and demanded to get back to work and made them carry out adaptions to the Service desk office.
At the time I was so shocked at the diagnosis and the fact that walking pretty much stopped just after the diagnosis.
I managed to get to the neurologists appointment to be assessed ok and even managed to shuffle down to the hospital for the results but the next appointments had to get on the bus at the end of my road,
Then just managed to get there and back with help from the bus driver and passengers on the bus that drives long the Prinsengracht, and Richie helping me on and off.
Took me forever to get about but could still get about, after I went for the first MRI I had a couple of weeks holiday.
Being at home made life easier as could manage to move around there by holding onto everything and until mid October 2006 could still get up and down the steps to the front door with a little help.
Did still get over the road for my physio sessions though noticed that every time I finished I was in great pain and could hardly manage to drag myself upstairs again.
Realise now of course that was my last gasps of mobility, if only I had some support after diagnosis.
But there was none available which amazed us both as we expected this aspect to be well organised here.
At the time the hospital I attended had no MS nurses, so there was no one to talk to or turn to for help and advice after diagnosis.
So we did then what we do now which is use our own common sense, shame though that there was no one to talk to.
Felt very alone and isolated with my problem as if I were the only person with MS.
Subscribe to:
Post Comments (Atom)
14 comments:
Hi Herrad! I'm so sorry you had no one in the MS field to talk to. However, the two of you are both intelligent people. Like you said, you are able to figure things out on your own. That is a good thing.
I wish you a good day. Say hi to DH and give your dogs a hug from Montana and me.
P.S. I would love to have the exact recipe for the dog treats you mentioned in your post!
Is there any way for us to communicate through e-mail?
Love, maryann
Morning
I'm having my first cup of coffee
What you said ... reminds me of what happened to me.
After my coma, I literally went home. I did have some at home care for a while ... physical, speech, and rehab ... she tried to show me how to get around the kitchen in my walker ...
My ins would only pay for them if ... I was home bound. As soon as I felt well enough to get in a car ... well, I was on my own.
I have looked for support groups but have found not one. Just someone who's been where I've been ... no one. So, for almost four years I've been in my after coma world.
Maybe I am the only one who made it ?
There are always flaws ... and every once in a while ... you find a nice Dr or someone who cares but in general I've found it very frustrating.
I don't go to Dr's unless I am really really sick ... goin to the er and going in a coma ... sick.
I hope you have a peaceful day
Herrad - Funny you writing this morning about waking up early and waiting for Richie to get up. I was just writing a post about what it must be like for Skip to wait for me in the mornings.
Our oven has been broken for a bit, but we've been unable to decide whether to get it repaired or buy a new one. It's over 20 years old so worry that fixing it may not give it much more life, but also don't feel we have the dough to spend on a new one right now. The idea of baking dog biscuits makes me wish it was working right now! I'd give it a try.
Dear Herrad:
If you yell and scream at actors in an attempt to quiet these morning rants; they will just ignore you with a volley of ruckus verbiage in kind.
The canine variety on the other hand will tend to listen and understand the seriousness of the situational consequences involved regarding their behavioral inclinations.
I must admit that those homemade Doggy treats sound quite yummy. Guess I better go whip up a batch and snack away until my hearts content. OK, I will pass along a few to the Dog also.
Hope you have a wonderful and joy filled day in the nieghborhood.
Your Pal,
Stan
Hi Herrad, have a pleasant evening, I hope dinner is yummy tonight. (Hi Richie, what are you cooking?)
My computer has not worked these last days, but today, eureka!, it woke up and is working...so far!
Your post is very good, Herrad, you are so articulate about what is happening around you and inside your head. I learned yesterday that a woman doctor I know has just been diagnosed with MS so I gave her your blog link. She is in a phase of denial, even though she is a doctor, she does not want to know what will happen. I understand her, at the beginning of CLL I also did not want to read what happens to us. Then I changed of course and now I read everything, need to know what there is.
What is the best advice you would give her?
Hugs and wishes that it will get cooler, Celeste
Throw a bit of garlic and onion in those dog biscuits and I may be sitting by your oven waiting!
Hi Maryann,
Thanks for coming by.
My email herrad@wanadoo,nl
The recipe is
Dog Biscuits:
1 mug flour
1 mug oats
1 mug chopped up peanuts
1/4 mug olive oil
1 spoonful of baking powder
mix oats and flour
add oil and mix throughly adding 2 spoons of water if needed knead slightly and form into a ball and push into a flat tin, push flat with hand rolling pin.
cut into squares so when cooked can be broken up into biscuits
place in cool oven@ 150 degrees
for 40 minutes or until cooked
they must be crunchy, can be baked twice.
cool and break up and keep in air tight tin.
Hi JC,
Sorry to hear you had no support whatsoever, bloody hell really expected that you had a debriefing/briefing session at least to help you pick up your life if possible.
You right about only seeing the doctor if you really need to, that is what I do.
Hi Stan,
How delightful to get a comment from you.
By the way even though was pissed off this morning would not dream of shouting at the young lovelies.
Wish the dogs could butto their lips and hope those parakeets don't squack again at 7 am on the bird feeder bloody horrible.
Hi Stephany,
Richie made cauliflower cheese in the oven and boiled new potoes, little red ones.
The weather seems to have broken there has been alot of rain and the breeze is cooler.
Hope your evening is good too.
Hi Celeste Maia,
I think she needs to take it easy for a week or so and then inform herself.
She needs to find out which type she has then she needs to know the medication and get informed about the pros and cons.
MS drugs only modify or suppress they cant cure and they have side effects.
Would hate to have to inject myself but would if it meant I could still walk.
My advice is she needs to inform herself.
Hi Andy,
The biscuits are good forgot to mention they also contain oats, garlic and onion would make
them even better.
Have eaten them with cheese much to the dogs disgust.
Have a good week everyone.
Love,
Herrad
Hi Cranky,
Lovely to get your comment.
Sometimes lying awake trying to br quiet is very difficult.
Hope you can get the oven fixed until you can afford a new one.
Love,
Herrad
Herrad,
You have many people to talk to now. I hope your days get better.
Shelly is soooo greedy, she is going to miss out on your dog biscuits recipe...We had to put her on a diet.
Blessings......
I think it deplorable that there was no one to counsel you. All too often people are shuffled in and out like numbers where they just swipe your health card so they can collect the money and to hell with you. grrrrrrrrrrrp....I am sorry for your isolating experiences, you don't need that on top of everything else.
Stay strong, you are a blessing to the world. Thanks for sharing.
Happy Monday, Herrad. I've been rediscovering SCTV lately, and Perry Como: Still Alive has taken on a whole new meaning for us. I'm still laughing at his version of "I Will Survive".
Hi Blinders Off,
Its really great to have alot of people to talk to I am enjoying it very much.
We give the dogs a biscuit when they come in from a walk of going round the block.
Apart from that they may get one as a special reward or we just think they should get a little boost.
Hope Shelly responds well to her diet and can have biscuits again soon.
Hi Rhapsody,
Thanks for your understanding and support it does me good.
It really was dreadful how we were treated, how we were abandoned and still now we have to steer our own course.
We do have a supportive general practicioner who is a good doctor and who will visit if I ask .
She can not do much for me but she is at least supportive and willing to help if she can.
Hi Steve,
Thanks for the Perry Como clip, took me ages to get rid of the total body clamped feeling that happened when I started to laugh and ended with me crying then sobbing and shrieking with laughter.
It was not a pretty sound so Spike had to join in and wail along too.
By golly really felt that laughter!
Was not sure I was going to survive this clip.
Thanks everyone for coming by.
Have a good day.
Love,
Herrad
Oh no! I'll have to think twice before pointing you to some of the other clips on that site...
Kiss the day...........
................goodbye
Post a Comment