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, May 31, 2009
One minute I was sleeping and the next awake, at first I lay happily for some minutes and then all the pain woke up too.
Really horrible could feel the whole range of the nasties plus the sheet or my top had got a tiny fold which was really irritating me in a big way.
Really noticeable how these little creases and folds can drive me pretty mad with the nagging irritation which turning to a big pain if left too long.
I am really happy given all the pain and discomforts that I can manage to sleep at all which I think is amazing.
This is all due to the relaxation the THC gives me.
Glad that I can as would hate to lie awake in pain and worrying about what the next progression is of the MS.
Really relieved this is not happening as would hate to be in that situation, get quite worried at times about what is in store for me.
I am not superstitious so do not put any supernatural meaning on things for example was very aware of words that I could have used instead of amazing such as miraculous.
Do not believe in miracles as I am convinced everything has a rational cause, I might not always understand everything but believe everything is understandable.
Apparently if I had stayed in Trinidad my chances of getting MS would have been drastically reduced.
In fact I might not have got MS at all if we had stayed in Trinidad as it seems there is less MS near the Equator.
Of course we would never have moved if I had a say in the matter or if the rest of the family had been able to have their say.
In so many ways it is a shame we did not stay also for my parents perhaps they would have been happier if they had stayed.
Moving to England certainly did not make them happy at all, far from it and refusing to talk about what was bothering them caused considerable strain for all of us.
Guess that is why communication is so important for me, must be like that for other people too, we need to communicate with each other.
By communicating our stories to each other we are creating links between us, bonds that help us to understand each other.
We need to understand each other so that we can live together.
Telling our stories are important, telling my story and what my life is like with MS is important and a daily part of my life.
Blogging has become a very important part of my daily life, blogging gives me more of a life than I had and gives me the opportunity to reach other blogger around the world.
It is a great tool for communicating and we need that very much so that we can support each other by communicating our stories, our mutual stories.
Those stories are important they keep us alive in each others realities.
In my reality the sun is shining and it is a wonderful day which I have been enjoying very much.
Labels:
baclofen; thc,
Equator,
MS pain,
progression of the MS,
Trinidad
Saturday, May 30, 2009
Jeannette's house in New Zealand.
Gareth's garden in Wales.
Jaya's balcony in Edmonton,Canada.
Woke up early too early almost managed to drift off again but just at the moment that I was drifting off, the lorry that empties the bottle bank arrived and started to heave the container out in order to tip the contents into the lorry.
Lifting goes on for what seems like forever followed by a huge crash as all the bottles crash down into the lorry.
Got Richie to close the window halfway through hoping the combination of less sound and additional warmth would result in resuming sleep.
Should have asked for a bag of THC as shortly after the window was closed felt all the pain once more.
Sadly could not get back to sleep that just did not happen as my pain levels shot up as I became only too aware of the feeling of being burned all over.
Plus a horrible fizzing tingle which is really nasty, best described as some sort of electric shocks.
It is bloody frustrating getting these sensations and not being able to do anything about it, can’t even shift on to my side or in any way alter my position.
Really upsetting that I am at that moment made so very aware of how much I depend on Richie for everything.
Felt quite marooned here in bed in a body that can not do anything that I want it to do, it is strange.
Remember watching a Charlie Chaplin film where a young woman can’t walk anymore and her despair at being so dependant.
Remember that I was very taken with her situation and for the first time became very conscious of what that might be like so really empathised with her situation.
Then years later not only can I understand, but I am in a worse situation where I can scratch my nose if I want just best not to as when I touch myself it results in red blodges and sometimes bruises.
Not really what I want to do especially as I have enough aches and pains without creating more.
May have accepted much about the way this shitty disease has affected me and therefore my life but can not totally accept it.
Have problems seeing the effect the MS has had on me, I am literally half the woman I was in weight and size.
I was relatively fit before the diagnosis which may have helped me to keep walking abit longer.
Now of course realise others knew and could see that I would not be walking for too much longer.
It had been weird that after making such good progress initially after breaking the cartilage in my right knee that I started to regress.
This was noticeable on my birthday on St Patrick’s Day 2006 when it took me about 45 minutes to do a short walk to a wonderful baker for some cake.
The shop was at most 8 minutes from our apartment noticed that apart from making strange movements with my right leg suddenly my balance was very bad.
After that it got progressively worse and in April was shocked to bits that I could not get to the Paradiso for a punk gig.
Tried to walk there but only managed to get up the road and round the corner when that was it, the batteries were running on empty and there was nothing left, we had to abandon the project and I dragged myself home with Richie’s help.
I kept working until a few weeks after seeing the neurologist and having the MRI on 23 June 2006, when one Monday in early July I could not get further than the top of the road when I collapsed and sort of crumpled up on the street.
A helpful neighbour helped me up and got me back to my front door and I dragged myself up the stairs and rang my work to tell them that I could not get in.
Then came the diagnosis on July 18 2006 where I managed if incredibly slowly to walk to the hospital on the Prinsengracht using the Nordic sticks.
After that my walking became more erratic and my range became smaller until in November 2007 on arrival at the Rehabilitation Centre Amsterdam I was immediately given a wheelchair.
Probably wrong of me, but wish they had given me a walking aid so that I could have walked for as long as I could, and then use a wheelchair.
As soon as I had the use of the chair after just three days my steps became extremely wobbly and on my first weekend visit home I had to use the wheelchair indoors.
Felt like I was giving up, but nothing of course could have been further from the truth as I threw myself head over heels in to trying to get the correct equipment for myself
Very difficult finding your way through the maze of funding and regulations wonder if anyone is totally successful.
Certainly does not happen without quite a fair bit of stress, which won’t happen this time as I am more aware how to tackle things.
Know now that I have to tweak my responses, so I am not too assertive as that will result in nothing happening, as the professionals like to make the decisions.
So must never ask for anything directly, have to put if forward for their opinion, ask what their advice is and then maybe it will get considered.
That is how I got the Carendo shower chair which is a great aid for both me as well as Richie.
http://www.arjo.com/uk/
It’s strange that everywhere else you are encouraged and have to be assertive except when you have a handicap then you become the deserving cripple who needs to leave decisions to those that can…… walk!
That really became apparent when dealing with the local government workers who administer the WMO which is the law which regulates what each local council has to provide people who become handicapped.
Try telling someone like me that now you are handicapped you have to become invisible well it has not worked and it will never work.
I can’t walk down the road and physically claim my space anymore but I will not stop telling my story.
Friday, May 29, 2009
This morning woke up to all the usual street sounds plus the sounds of the builders next door as it was only 8 am or so asked Richie to get some thc for me so that I could go to sleep again.
It worked a treat except that every time I was going to slip off again either the waste bins by the Fijnhout theatre were being emptied, it always sounds like they are being thrashed against the wall.
Or what sounded like hundreds of kids would burst out on the road and scream around for five minutes and vanish as suddenly as they arrived this happened twice.
Ah well did manage to doze quite happily until 10 and felt quite refreshed for it too, was nice as we did not turn the light off until 2.30 this morning as I was watching Sean Connery in a movie.
He is eminently watchable in anything, if it had not been for Sean Connery I would have given it a miss.
Soon as the pain kicked in Richie fetched me some THC and once I finished the arm exercises Richie did the leg exercises and then the leg massage which really made my legs feel better with less tension in them.
After that quickly took the baclofen tablets and eagerly waited for Richie to get my laptop and place it in front of me.
I am eating strawberries as I write this, Richie came through with a small bowl of strawberries which he placed on my stomach.
They are delicious what a lovely day, this is despite the pain, when I get sweet comments on yesterdays post from lovely blog friends and the sun is shining.
Life given all the restrictions is good, would prefer no physical restrictions but that is just how things are.
If there was any way Richie and I could change my situation, we would do it, we would be tireless.
Once we realised there was nothing we could do to change my situation we had to try to accept what was happening.
Do seem to have accepted now that what used to be is well in the past now and will not happen again.
Notice that acknowledging that has made my daily life easier to deal with and much more manageable.
This in turn means that daily life has become acceptable and I have a good quality of life despite the physical restrictions.
Can’t be bad lying here nibbling strawberries and about to have a brunch of fruit smoothie from cranberry, apple, pear, orange and carrot.
And delicious Moroccan bread wedges with a variety of delights such as avocado, sardine with pepper sauce, homemade peanut butter and goat cheese.
Richie will join me with a cup of coffee, lovely then I get the aroma without needing to drink any which is the best of both for me.
It was a feast really delicious and tonight we will feast on individual savoury tarts, the pastry filled with a sardine ands creamy goat cheese (not very goaty) mixture with tomatoes and garlic and fresh basil.
This will be eaten with cabbage cut in strips and steamed for a couple of minutes and tossed in a dressing of olive oil, garlic and lemon juice and crispy fried potatoes.
Desert is apple/raisin and ginger cake with fruit custard which is delicious, had some yesterday and the day before so must start lobbying for a new cake, this time chocolate, nice gooey chocolate.
The sun is shining and the blue skies are very pretty which means happy day here hope it is like that for all my lovely blog friends.
Have a good Friday.
.
Labels:
arm exercises,
baclofen,
leg exercises,
leg massage,
Sean Connery,
thc,
The Fijnhout theatre
Thursday, May 28, 2009
Thursday already which means it will be 14 pm all too soon and the physiotherapist will be here to put me through 30 mins of exercises.
Looking forward to seeing Mathilde, she is such a sweet kind woman with a great sense of humour.
Can just be myself which takes any stress right out of the equation; really feel that I benefit from her visits twice a week.
Would have it every day if I could, as that would be even better than twice a week, but do not think that will happen which is a shame.
As soon as I notice I am up against it I try to check out what happened.
It usually helps to see what has happened; only sometimes it does not make any sense what so ever.
Just as it is senseless that although there is no feeling in my lower body, I can not move even one toe yet if there is the tiniest of creases I will feel it.
This was not so until February and since then every tiny crease, wrinkle, fold that is under any part of my body is felt.
Drives me mad at times as it can wake me up and keep me awake, often Richie can not find anything, but after he pulls the sheet straight whatever it was is gone.
Woke up too soon this morning when a range of noises all combined to shock me awake.
The lorry was next door at the house that’s being renovated they seemed to be using lifting gear, probably bringing in building supplies.
The other loud sound was a jackhammer which was being used to dig up the old foundations in the back yard.
At the same time the waste paper bins were being emptied around the play area and troupes of happy children went by and loud men's voices were yodelling at each other in the near distance.
Almost sounded choreographed but know it was just one of those happy Amsterdam coincidences.
Feel very marooned in my body today and super conscious of not being able to move at all, apart from my body shifting and sliding and slipping.
Often have to get Richie to adjust my positions sometimes do not notice right away that I am leaning to one side.
It’s a little like listening to the radio for ages before realising it’s not tuned properly, often would listen like that for hours until someone else would notice the tuning.
Then would become t otally aware it had been dreadful for ages, whats strange is that somehow I had managed to blank it out.
Often works like that with discomfort, that I can tolerate it for ages before it all becomes too much.
Today am noticing every little thing and feeling supersensitive probably be a good idea to get Richie to haul me out of bed not too long after the physiotherapist has been.
If he gets me up at 15 pm I can be back in bed washed and exercised by 16.30 and then Richie can get on making dinner and taking the dogs out and we will have a pleasant evening.
Hopefully I have been able to push away the dark thoughts now and let the sunshine in, which so very important.
Also important to acknowledge what is happening otherwise it becomes a vain attempt to rewrite history which alas is not one of my tricks.
Sadly it is not otherwise I would cut to the next scene where I get up off the bed and walk away into the sunset.
How I wish that were possible can almost imagine how it feels, what it would be like to walk again and to feel my stomach muscles when I am moving.
Know this will not happen again for me so instead get alot of pleasure seeing and hearing about other people who can walk.
Love the triathlon blogs with tales of cycling, running and swimming really enjoy their stories and their enjoyment.
Love reading other blogs and hearing about other lives and other experiences, for a time it takes me away from my situation.
It does not stop my pain nothing can as the nerves either register nothing or go into overdrive and register all sorts of pain that is not actually really happening.
Since I woke up today have had a nerve pain travel from one side of my face to the other and up and down my body.
Seems to have gone a way at the moment, am really pleased with myself for not touching any of the places that were irritating as that would have made everything more sorely.
Difficult to stop the automatic response of touching but slowly learning that I must never ever touch myself and scratching is a big no don’t do it as it causes too much discomfort.
Realised life would be different just did not realise how different it would be and that it would extend to every part of life.
The sun is shining now as the clouds clear and blue skies are revealed behind the clouds.
Going to enjoy the day hope everyone else will too.
Labels:
Amsterdam,
Het Fijnhout theater,
MS pain,
physiotherapist
Wednesday, May 27, 2009
Slept late again it is now 12.23 and is only now slowly getting going; we slept until 11 again which was good.
Not too much street noise apart from a couple containers being placed, funny thing is this year the development down the road is finally finished.
Felt like living on a building site, every morning all the blokes met up across from our bedroom and shared a cup of coffee and loud conversation.
Very social and nice for them but not at 6 am in very loud voices outside everyone's bedroom windows.
After the workers had coffee they picked up their power tools and started work.
All the time waste containers were being delivered by Lorries and would be tossed off with a huge thump.
The daily chorus would start in earnest then; it was murder when they were doing the foundations and later on mass drilling.
Luckily that has stopped but now there is the odd house plus the latest redevelopment right next to our building.
They are extensively renovating and redeveloping the bottom of the house, which means some bits are being taken back to the foundations.
Hope they are done soon as it could get quite noisy and dusty out the back, still in August all building sites close for the month and it’s peaceful.
Most cars on the street are gone too as there is a mass exodus of people going on holiday and life round here is very pleasant indeed.
Always daydream about digging the road up and planting the street with flowers and fruit and veg.
It is a lovely fantasy can just see this oasis of plants and fruit trees.
Now can only hear some heavy machinery next door, Richie tells me it is sand they are lifting in to the back of the house.
Writing yesterday about Marianne and Karin being volunteers made me remember a visit I had from my first prospective volunteer, a strange woman that came to see me one day.
Our last front room Richie had to paint while very ill with flu; I was even worse and had to stay in bed.
Really not the sort of activity for a sick person but the room had to be done as it was only a few weeks to my 50 birthday.
So Richie painted it all blue and bought a few Indian posters of Hindu Gods, which are very bright posters.
These were stuck up and with some mirrors and little glass candles holders dangling from the ceiling it became quite a dreamy room especially as Richie had painted clouds on the ceiling.
So this volunteer came round, she seemed a strange woman who seemed to view all around her with haughty disdain.
After a minute she told me that she could see that I was a very spiritual person.
I was astonished and denied this but she persisted and eventually said but I can see it in your room.
This puzzled me alot, she then said I can see it in your room pointing at the Indian posters.
Smiling I told her we hung them for their bright colour, no, no she insisted you are spiritual I know I can feel it.
Again I said really I am not these are here for the colour but she would not hear of it insisting that having the posters was proof that I was spiritual.
I had after all gone to India to get them she said, at which point I laughed and said that I had never been to India in my life.
She asked me where I had got the poster from if not India whereupon I laughed again saying on the Dapper Markt (market) here in Amsterdam.
This was not a popular answer with the lady, who was indeed a lady visiting the deserving poor.
She then declared me to be spiritual despite this and said she sensed it, and she knew what she was talking about.
Then she said that I was not to worry she would be able to release the spirituality within me, and she would gladly be able to do this for me.
I declined her offer.
Luckily my carer came round then and I introduced them, my carer the lovely Marjan asked
the volunteer what she knew about MS.
She responded by saying she knew all about MS and knew everyone died of it.
At this point I asked her to desist from this discussion right then and there and asked her politely to leave the room as I needed to use the toilet chair in the front room.
She remained sitting seeming not to understand me so I asked again and another twice finally I lost it and yelled please go into the kitchen.
But why she asked?
I roared because I need to use the toilet chair here and do not show my naked arse on the first date.
She left for the kitchen.
After I finished peeing I went into the kitchen to apologise for shouting and the good lady says ‘but why did I have to go to the kitchen?
At which point I had had it and asked her to leave.
She did so.
Later she called me just as I was about to apologise again she said ‘you know I still don’t understand why I had to go into the kitchen’
That is when I said I don’t think we are a match and would you believe it she started arguing that she would be good for me.
I repeated calmly that I did not feel we had hit it off, we were not a match.
Finally could only hang up as she kept arguing that her and me would really get on you wait and see ‘I know we will get on fine’
Felt a brute for cutting her off like that but had to look after myself.
Still look at one of the posters on the bedroom door and think about being seen as spiritual.
More philosophical than spiritual and often more political and even more often more social.
Tuesday, May 26, 2009
Growing Potatoes
Interesting links about growing potatoes:
http://www.youtube.com/watch?v=LQOLAY3BELE&feature=related
http://www.youtube.com/watch?v=vyXJzjJnd88
http://www.youtube.com/watch?v=LQOLAY3BELE&feature=related
http://www.youtube.com/watch?v=vyXJzjJnd88
Lori Schneider achieves her goal of climbing Mt. Everest.
Read the story here:
http://www.guideposts.com/story/lori-schneider-mt-everest-summit-multiple-sclerosis
Read the story here:
http://www.guideposts.com/story/lori-schneider-mt-everest-summit-multiple-sclerosis
Last night there was a loud thunderstorm which began just before 22 pm, the dogs were quite worried by the thunder.
Marleen gets especially worried so got Richie to let her go on to his bed; this seems to do the trick for her.
Richie had to wait until after 1 am before the storm had calmed down sufficiently for him to go out with the dogs for their last pee.
At 1.30 am they got round to the dog toilet without any mishaps, they did get blown about abit but luckily the storm had moved away over the water behind Central Station.
At 2 am the storm came back and was going mad overhead and the rain came down like stair rods interspersed by huge hailstones.
At 2 am the dogs charged in after a huge clap of thunder seemed to tear the sky apart, Spike jumped under the duvet with Richie and Marleen went to sleep under my bed until dawn when the storm waas gone.
Read in papers today that the wind speed was 100 to 150 kilometres per hour wind and hailstones of 5 cm.
Got very worried for the flowers on the windowsills but they look ok today.
Pleased about that as I remember Richie planting up the balconies in an old flat and after two hours a storm happened and the hail decapitated every flower it was a massacre.
The plants never recovered neither did the weather that summer.
Ever since we have been cautious sometimes too cautious and missed the spring flowers.
We did not do that this year and have pretty flowers on all the available windowsills.
Because of the storm we were up very late today usually Richie massages my legs and gets the baclofen at 10 am but today it was 11.30 before we were awake and suddenly it was 14 pm and Marianne was here for her Tuesday visit.
Marianne came here originally as a volunteer in October 2007 and quickly felt like a friend and now she is becoming a very good friend which is brilliant.
She is a very lovely woman very kind and pleasant to have visit.
Glad she still wants to be friends, sadly another woman who also came as a volunteer in October 2007 has stopped coming.
She told me one day she would see me on the following Friday and emailed me the following day saying’ won’t be coming anymore don’t feel I can contribute anything to your life’
Was not a nice surprise but somehow not totally shocked as had felt that all was not ok since I have been in bed.
Sadly she never wanted to talk about it but I did feel she became very uncomfortable around me shame as I am still me.
Shame too as I really liked Karin, thought she was quite a girl.
Guess thats life.
Monday, May 25, 2009
,
Started to cry not too long after I woke up and all the pain kicked in again felt quite desperate for abit.
Especially as I was lying on my back which makes me feel even more vulnerable and defenceless.
Richie rescued me with THC and massaged my legs extra long and did extra leg exercises which seemed to ease some of the pain.
No antibiotics today yippee yesterday was the last day so glad that is over they made me feel slightly sick all the time.
After Richie sorted me out with baclofen and food supplement drink and most important of all the laptop he then got busy with a few things.
Number one was plant a sprouting potato in a bucket and who knows we may well get a nice little harvest.
Even if it is only a couple of pounds it will be brilliant to be eating our own potatoes.
Shame we did not get a house with a garden, we nearly had one it was near a neighbourhood we used to live, I lived there from 1981 to 2000.
The flat seemed ideal, two bedrooms and a garden, trouble was I was only number 2.
Number 1 took the flat; she was desperate to get out of the RCA, the Amsterdam Rehabilitation Centre.
So did not care where it was or whether it had a garden.
Real shame for us but really hope she became less negative as well as less stressed and could enjoy her new flat and maybe even the garden if she dares go outside.
Hope she does.
Richie has planted the available space we have very nicely; the balcony at the back has flowers and Black currant and a Loganberry and Thyme and Coriander and Tomatoes, Paprika and hot Peppers. and Potatoes.
Sadly they are not Scotch Bonnet seeds could not find them here, they are the best peppers.
The kitchen windowsill has Coriander, Basil, Strawberries, Rosemary, Thyme plus flowers
Front windows have flowers and Coriander and Basil.
Going to request a pot of Lavender to perfume the balcony the next time Richie goes to the Garden Centre.
So good to have space here for some plants real important that the city be made as green as possible, its good for the bees if there are any flowers around.
If all the roof space were cultivated quite abit of vegetables and fruit could be grown there, Richie estimated that the roof space on our building would keep us all supplied with vegetables.
Something which should be stimulated perhaps Amsterdam City Council should sponsor such an initiative.
It would cut the carbon footstep on food delivery and make the city much greener and be great for the environment.
As well as give a lot of enjoyment to many as well as lovely fresh local produce.
Can we do it?
Yes we can!
Sunday, May 24, 2009
Life has changed so drastically that I can not contribute anything now to my daily care apart from doing the arm exercises.
It is tremendously frustrating to not be even able to squeeze toothpaste on to a toothbrush or pluck a hair out of my chin or file my nails.
Hate not being able to do anything for myself not even little thing, have lost sensitivity in my fingers so can not feel things and therefore do not get any information anymore through touch.
Do still feel pain, have a lot of pain and discomfort in my hands that are recently cramping up more which means a constant battle to hold the mouse.
Other times my hands are in constant pain with every now and then an electric shock, when it is hot weather they feel like swollen sausages and are quite painful.
Not easy to assess what is happening with the progression of MS, it is not easy to live with it, it tends to burst in uninvited and squat your life forever
Really hate being so dependant, gets me very frustrated and cross, emotions I try my best not to let fester by shouting and swearing when I am in the bathroom.
Always feels better after shouting it away from me, seem to remember that the Jungians recommend screaming as therapy.
Don’t really need a guru of whatever persuasion to tell me stuff that is logical, guess that is why I am never attracted to self help books these days.
I am already helping myself with help from others and giving help to others too so a mutual aid society which is how the planet really needs to be organised.
Shame that the same sort of time, personnel and money that goes into making weapons of mass destruction can’t be used to make life better for all people.
Why spend so much time and money working out how to kill people, seems an odd focus when doing good and being helpful to your neighbours is less effort and could produce a better effect and be pro people and pro planet.
It is a sad fact that there are far too many people suffering from MS and other progressive diseases.
Which could be different if resources similar to what is put into arms research or space travel were put into medical research (not by pharma companies) and ways of cultivating your own food.
Real shame that killing people is still the favourite pastime for our rulers and getting us all worked up about potential threats to us when the biggest threat is us. So that the killing can be justified.
If only all the time, effort and resources were being used for good things we would all be happier and healthier than we are now.
To much concentration on competing for the biggest slice and forgetting the benefits of
co operation which is pro people and pro planet.
When the bees die and all the rivers and seas are polluted we can not live on money and possessions.
That’s why we need to get together to change things right here and now starting in your own neighbourhood.
Here’s hoping for a better life for all and Yes We Can Do It!
Saturday, May 23, 2009
A Lovely Blogger Friend Award
I was given this award by Lucy at What is left of a whole new life.
http://whatlifeisabout-lucy.blogspot.com/
She got it from Blue at The Blue Cafe
http://bluenblogi.blogspot.com/
(you can translate from Finnish to English)
Thank you Lucy.
I would like to pass it on to the following people:
Webster
Halt Stop Forget Relax
http://hsfr.blogspot.com/
Stephany
soulful sepulcher
http://bipolarsoupkitchen-stephany.blogspot.com
Amelia
Tales of Life With Multiple Sclerosis
http://talesoflifewithmultiplesclerosis.blogspot.com/
Ana
Just Ana
http://justana-justana.blogspot.com/
Rain
Mountain Mamma
http://rain-mountain-mamma.blogspot.com/
Erin
The Lemon Aid Stand
http://thelemonaidstand.blogspot.com/
Stan
Is Something Not Quite Right With Stan - A Mental Health Blog
http://bipolar-stanscroniclesandnarritive.blogspot.com/
Please pass the award on.
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.
http://myjourneywithms-kimberly.blogspot.com/http://myjourneywithms-kimberly.blogspot.com/
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.
http://www.speedybikes.co.uk/elektra.html
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.
http://www.wolturnus.dk/Sites/UK/haand_main_uk.html
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.
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