About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Saturday, August 08, 2009
Summer Saturday in August.
Being patient has never been my thing so finding me so handicapped so quickly and unable to do anything for myself is endlessly horrible.
Despite how horrible it is I have to do my very best to live with it and make the best of my life now.
And I believe that I do that
Being in bed for a year (on 21 August) has meant being very patient, so very patient, like I never thought I could be.
All the time that I am aware that I am having to and am being super patient I am also aware that my impatience is bubbling inside me like a volcano.
Somehow both things happen at the same time, my impatience rages but I remain calm, do not know how or why it happens but it does.
Every now and then if there is any pressure built up I have a good cry and of course I still have a shout out when I need to let off steam.
It is very strange to feel so patient when I am anything but; it is difficult to do anything else, have no other options.
Hate being so trapped, in this immobile body which I can not move, like yesterday really needed to move around and sort out a few things.
Not much really, just need to sort out post and some admin but I can’t get the folders and look through paperwork as my hands can’t turn pages or pick up pieces of paper or shuffle through paper.
This is very frustrating as it means that I can’t do even this on my own, it always got me agitated, as I hate paperwork and burocracy.
One thing I noticed right away is that as a handicapped person you get lots of burocratic mail it is like a whole industry on its own.
It is practically a full time admin job dealing with all the letters from local burocrats and now because I need a lot of help to do this it gets me quite upset.
It makes me so aware of being stuck here in bed with only my torso, still feeling and still being able to pull myself up using the grip suspended over my bed.
With that I can pull my shoulders off the mattress, I am doing my best to get my stomach muscles to cooperate so I can attempt to strengthen my back muscles which I will need to sit up properly again.
A year in bed has been bloody difficult at times, luckily for me Richie has made it good, he has looked after me so wonderfully well.
Friends visit and phone and Skype and email and blog contact and conversation has really helped me to cope with it.
I am hoping that things can and will improve; it is noticeable that I have built up my arm muscles by doing 30 minutes arm exercises every morning.
My arms had got shockingly thin and the muscles were pretty slack this time last year from 5 months of using the electric wheelchair.
Quite shocked me last August when I noticed, with the help of my physical therapist I put together a set of around 15 different sets of arm exercises and do three sets of each which takes 30 minutes.
Really pleased that my arms look and feel and operate as arms again, really quite proud of that, it feels good to have a success.
Yesterday after I had posted I visited other blogs I follow and one was Mort’s@Caring and Sharing, went there to find out how he is doing after his recent visit to the hospital.
http://mortonlake-caring-and-sharing.blogspot.com/
I read Mort’s account of his hospital visit and I also read that Mort was urging people to visit Janes’s blog@ A Journey of Another Kind…..Jane’s Journey -The Final Leg
http://a-journey-of-another-kind.blogspot.com/2009/08/janes-journey-final-leg.html
Please visit Jane’s blog; she needs support right now as she assimilates the result of her bone scan.
Also visited Judi’s blog@Life as a Hospice Patient
http://judi-lifeasahospicepatient.blogspot.com/
Judi is having her Memorial party this Monday, hope she has a good time and enjoys seeing her friends and colleagues.
I shall be there in my thoughts.
I also visited Diane’s blog@A Stellar Life.
http://dj-astellarlife.blogspot.com/2009/08/losing-touch-while-ms-moves-on.html
Read about Diane coming to terms with loss of feeling in her fingers, it is something so weird when that happens.
Diane is right things that you know were and are soft now feel like sand paper, touching and being touched is no longer as pleasurable as it was.
Sometimes Richie touches me and I mostly feel nothing or it feels like being touched by sandpaper.
Then I visited Rain’s blog@A Walk in the Woods
http://ocean-sunsets.blogspot.com/2009/08/why-i-hate-quebec-people.html
Here I read about the mental handicap called racism.
Incredibly Rain was refused medical attention because she is not a born French speaker.
Still can’t quite believe that people can be so inhuman towards each other.
Went to visit Steve and BR@The Wheel of Fortuna
http://spinfortunaswheel.blogspot.com/2009/08/welcome-hope-margaret.html
And read about a new baby called Hope Margaret a beautiful little baby with two very happy uncles Steve and BR.
A nice story and a nice photo on Stephany’s blog@soulful sepulcher
http://bipolarsoupkitchen-stephany.blogspot.com/2009/08/summer-plum-pie.html
Of a gorgeous Summer Plum Pie yummy really wished we were neighbours as nothing could have been nicer at that moment, than popping round for a chat and a piece of pie.
Richie has promised to look out for plums while he is on the market just now.
Seems we will be watching the first football game this evening at 6 pm how very exciting, hope that a quick shower can be fitted in before hand.
Then we can enjoy the evening together which is a pleasant prospect.
Despite the forecast of a rainy weekend so far no rain has happened, but it was only a mere 25 degrees at midday instead of the 30 degrees it has been at for the last few muggy and humid weeks.
Think it is getting hotter again, will get Richie to adjust my position in the bed as I seem to be sliding over to the right and down in the bed as I am typing.
Have a good Saturday, I intend to enjoy mine.
Here is a webcam just up the road from where we used to live by the Prinsengracht in the centre of Amsterdam.
http://www.eyelogue.com/donniecam.html
And a slide show of pictures of Amsterdam
http://www.bigbusy.net/
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7 comments:
Hi Herrad, only today I was able to connect as I have been in very remote areas.
It must be very hard to be patient and perseverant with your exercises.I dont know how I would be, few people know what they are capable of.
I will visit the blogs you suggested, they all sound worth learning about.
Hugs from the north of Portugal.
Hi Herrad---
We're working on getting a laptop by summer's end. When we do, I'd love to Skype with you via its webcam. I tried this out (sans video) with a friend who has a webcam and it was fabulous. I'll let you know when we do get this, if you're interested. I enjoy one-on-one talks with other MSers :)
I'm enjoying all of the photos you post here. Thanks.
Talk again shortly---
Jen
XOXOXOXOXO
I totally get what you are saying about being impatient. All that non-mobility must be very difficult for you.
I hope you can get outside at least pretty soon.
Hi Herrad! Thanks for the mention, I suppose if I gave in and begged for the doctor to hear me out in french, I would have got my allergy pills, but I refuse to do that. I'm just handling it with the over the counter stuff for now until I get to PEI.
I hope you're doing well this evening and enjoying the footie! That slideshow is really great, I love seeing photos of Amsterdam, and the graffiti is really artistic! Neat webcam too, I always wanted to set one up, but I'll wait a few months to look into it! :)
I wrote this at my pie post comment section of my blog, and am copying it here too:
Hi Herrad! The blackberry bushes are just covered in clusters of blackberries, all still green and each cluster at least a bowlfull in size. I think I will be making a pie and attempt jam too! they are wild all over my yard, and this year is an exceptionally big batch.
Koda eats them right off of the bush. He's figured out how to do it without getting into the brambles and thorns and delicately bites the berry off and eats it!
It sure would be nice if you and Richie could come sit out on the patio and we could laugh and talk.
I'm proud of reading about your arm strength, that took a lot of work and determination.
herrad, that HAS to make you feel better, just by knowing that your arm exercises are really working! it's so hard to keep up with exercises if you don't see an effect! my physical therapist told me it's not my legs that are my problem. it's my hip muscles~! so i;m working on that now!
Hi Celeste Maia,
How is your trip going, hope you are having a good time.
Hi Jen,
Skype is very good way to talk, good forme then I don't have to hold the phone.
Hi Nadja,
Immobility drives me mad at times bt have to keep a brake on going over the top with getting angry and upset.
Hi Rain,
Really cross reading about a doctor refusing to treat you.
Incredible.
Hi Stephany,
Your blackberries sound delicious, Koda knows they are great doesn't he, what a clever dog.
Hi Libby,
You are right I do feel good about my arms, very good in fact.
A good physio is worth so much more.
Thanks everyone for coming by, really appreciate it very much.
Love,
Herrad
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