Wednesday, December 24, 2008
Did not realise in how much pain I was in until a dear friend Cari sykped me and asked me how I was doing.
Could not cope said first I am ok then said of course I am not ok I have MS.
As if she did not know that, realised when she abruptly ended the call that I had been really hurtful which was not my intention.
On explaining what happened to Richie found out that he has been feeling abit distanced from me cos I was keeping quiet about how bad I was feeling, Richie told me he prefered to know.
Not knowing made him feel shut out and isolated from me, not what I wanted to do at all.
Just tried to concentrate on the positive and not spend everyday talking about how much pain and discomfort I am in and the prospect of more of the same plus losing more functions.
Richie and I talked and cried together,then Cari and I talked and now I feel alot better and have resolved to talk more about how I am feeling and to not keep so much to myself.
Sunday, December 21, 2008
Saturday, December 20, 2008
Yesterday was our seventh wedding anniversary.
Funny thing happened just after we got married in 2001 when we met our ex neighbour up at the Haarlemmerdijk where we used to live.
She said ' Herrad how old fashioned of you to get married'.
Incredible woman such wit!
She was very against alot of the squats, but not the one I lived at as she had befriended our resident cat.
After she found our cat in her garden and took it in we could do no wrong in her eyes.
It made life on the Haarlemmerdijk very agreeable for us indeed.
Friday, December 19, 2008
Today began badly with the bed sitting me up more upright than I wanted and not reclining again.
Gave us a big shock but luckily Richie could get it to go abit lower as had to wait from 10.00 am until 16.00 pm til the emergency chap got here.
If Richie had not been able to get the bed to slightly recline it could have been a painful day.
Especially as I have been advised not to sit up n the interests of the wound healing.
As it was it was an uncomfortably long wait.
Oh well played the quiz on freerice.com did vocabulary and capitals of the world and paintings its great fun took my mind of waiting.
But tomorrow is a new day. Our anniversary yippee! Richie is making me jerk chicken and pear/kwiwi crumble and custard as well as space cupcakes and the dogs will eat fresh tripe and I will sip a glass of bubbly.
Better go to sleep so tomorrow will be here soon.
Monday, December 15, 2008
Sunday, December 14, 2008
If I wake up very early, say at 6 am and am in pain and can't get back off to sleep Richie gets up and get me a vaporizer bag of thc which relaxes me and I can sleep again.
It's better than sleeping tablets and no nasty side effects like loss of appetite, feeling morose and very negative about everything.
Not what I needed, since I stopped have noticed that my appetite is better and now do not cry so much only when I need to.
Also not so negative as with the sleeping tablets.
On Robert Groth's blog read how he took too many painkillers over a long period but because they were bought over the counter he thought they were ok.
Me too with the sleeping tablets, they were prescribed so also thought nothing of it until had taken them for 10 months every night and one day caught sight of my pinched face and had a huge shock as I realised that I was becoming very dependent on the sleeping tablets and they were not having a good effect on me.
So stopped just like that same as with smoking cigerettes in 1999 and joints at the beginning of this year.
What works best for me is to stop right away no gradual stopping just decide and do it.
I have done well to reclaim my life but only mentally and not physically as I needed a wheelchair for getting about outside right away and within 3 months of diagnosis I could not walk down the steps anymore.
After 4 months was fulltime in wheelchair and after another 5 months couldn’t get out of the chair anymore and transfer to an ordinary chair or to bed or shower chair and needed help with everything.
Could still write and cook abit, simple things like like scrambled eggs or stir fry something prepared for me to use and could still use knife and fork and hold a glass or cup in one hand and eat with the other hand.
Had additional stress as we lived on the second floor without a lift so was stuck indoors for about a year only getting out twice a week to rehab when I was carried down the steps by the men from the mobility bus and their scary chair.
Sadly by the time we moved a year after diagnosis could not go out on my own as my hands could no longer function very well, could not use a key or open doors or even my purse.
I needed help with everything but could still type and pick up things and eat, could do things with both hands by the end of summer a year after diagnosis I had a catheter and could only type with one finger and needed even more help.
Now 2 years and 4 months later I am totally handicapped and need everything done for me.
One good thing now is that I found myself again and no longer feel useless and somehow less of a person and a woman, now I know that I am still the same person still as dynamic as ever and still the same sharpness.
Had to get through a morass of feelings to get here and I have by experiencing all the highs and lows of the last couple of years and thinking things through and refinding my sense of humour.
Now I have reached where I am now which is in alot of discomfort and pain and in bed all the time because of the nasty pressure sore and can now consciously enjoy everything that I have like Richie and his love and care and a nice flat, friends and our dogs and the fact that I have realised that my body is crap but my mind is fine, in good shape and life is good.
Taking each day one at a time, now look forward to our wedding anniversary on 19 December and then Winter Solstice and Christmas.
Thursday, December 11, 2008
Recently been having alot of very good days,not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.
Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.
Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and beathing independtly won't be possible anymore.
Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.
Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my lifec now and what I have which is lots and the last thing that I want is to die.
But I wil do the only diference for me its sooner rather than later and won'be a surprise thing.
Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.
My life amd my dreams are far from over, intend to really enjoy this Christmas.
Wednesday, December 10, 2008
Sunday, December 07, 2008
Saturday, December 06, 2008
A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.
They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.
Thanks for all your support it is very appreciated.
Given me a huge boost and that has helped me to cope with having to be in bed for so long.
Thanks all you wonderful people.
On wednesday the wonderful nurse from the Rehabilitation Centre Amsterdam came by on his weekly visit and was very pleased with how the wound looks.
On his instructions Richie can now stop applying the wound cleaner and start with something else.
He is very pleased with the progress and so are we.
What a relief to know that progress is being made.
In the afternoon a friend came around and brought a beautiful bunch of roses, that are the lovliest roses that I have seen in ages.
Not only beautiful but also smelling like roses.
Later on Richie popped out and bought a small christmas tree for the bedroom.
Its lovely and makes the room look great.
Sunday, November 30, 2008
Find it difficult to deal with questions such as:
What does the doctor say?
In my case nothing as they do not know and can not make a prognosis.
Or are you any better?
No and I won't be better.
Or about the wound when do the doctors think it will heal?
They have no idea and say slowly.
It's very worrying to have an illness where doctors can not help me which is weird as we are all brought up to think the doctors can always help.
Just not with something like primary progressive MS then doctors and patients have to gamble.
Today my favourite cousin, Katrin visited me which was very good.
Every month she spends a week at her mother's in Essen, she travelled there from Normandy, France yesterday.
And this morning she got on the train at 9am to come to Amsterdam to visit me.
She got here at 12 noon and we talked and talked and then suddenly before we realized, it was already 17 pm and Karin had to leave and head off to the station to catch her train back to Dusseldorf.
A lovely day sadly after Katrin had left I discovered that my right hand is not working too well am finding that its difficult to open things and amd finding it very hard to use my laptop.
Hope its a temp. blip and not that this is the end of being able to keep myself amused with playing patience and freecell and mahjong and read the papers and listen to the radio.
Nothing earthshatteringly important but activities that have meant that I can cope with what is happening to me
Saturday, November 29, 2008
Been good days these last few days.
Thursday our lovely neighbour Willes came down and helped us sort through a huge pile of post which was brilliant as I could not cope with it.
Not easy to do the administation lying in bed.
Huge relief when all the post was sorted, dealt with and filed away.
Friday was another good day,first had a lovely visit from our lovely friend Jeanet and after she left our two lovely friends Gareth and Paul from Wales came to visit.
They are in Amsterdam for a week, it was brilliant to see them looking so well and so happy together.
Gareth moved back to Wales in 2003 still miss him living close by but can see that it was the right decision for him.
It was a good visit, Gareth and Paul went up the road and brought back a delicious meal which I throughly enjoyed.
A very good friday.
Sunday, November 23, 2008
Friday, November 21, 2008
Yesterday was a good day but sadly in the evening things went differently.
Richie was getting me out of bed with the hoist and had just hoisted me up and was getting me off the bed when I said get me to the shower chair quick as I feel that I am slipping and as I said it I fell.
Luckily my fall was broken by me striking the bed with the back of my head and after hitting it twice ended up on the floor.
Richie got the phone and dialled the emergency number as my head began to bleed copiously.
Willes, our neighbour came down soon as Richie called her and held my hand while Richie pur something under my head to staunch the bloodflow.
The ambulance people arrived and were very good they got me up on the bed and checked my head which turned out to be a scraped head and not a deep wound.
What a relief!
Thay advised me to take a painkillere and to wait for an hour before getting out of bed.
We took their advice gladly as we were both having a reaction to what had happened.
Was very wobbly for a couple of hours and finally after midnight Richie got the sling attached to the hoist and gently and safely got me out of bed.
Thursday, November 20, 2008
Thursday, November 13, 2008
Wednesday, November 05, 2008
Good news today from the plastic surgeon who visited this morning with a colleague and the wound care nurse from the Amsterdam Rehabilitation Center.
The doctor was very happy with how the wound looks and is now confident that it should heal slowly.
He confirmed that there was now no need for an operation.
What a relief.
He complimented Richie for his excellent care and especially for keeping the wound clean and well bandaged.
The nurse said they could not do better at the rehab. center.
We are both very relieved and happy.
Wednesday, October 29, 2008
Monday, October 27, 2008
This nasty deep wound on my bottom is a pressure sore from sitting badly in the wheelchair.
Sadly easier to get than to get rid of, happens when balance and sensation do not work anymore.
In June a team from the Rehab. centre advised that alterations/adaptations be done as quick as possible to prevent pressure sores.
No immediate action happened as it was holiday time so had to wait til end of July/beginning of August.
I also applied for a constant airflow cushion you get them from Doove here in the Netherlands and Ease in the US.
First they denied their existence then they said they did not work and then I found out it was considered too expensive.
Money being more importent than any other comsideration.
So my wheelchair was not adapted in time to give me adequate support, it was obvious in March when I got the chair that I was not sitting good.
The result is the pressure sore that has kept me in bed since 21 August.
Hope that it heals well so that I can sit in a wheelchair again and get outside to visit friends and the market.
Well doing my best to stay positive and make the best of it.
Sunday, October 26, 2008
Pretty euphoric after wednesday, felt like I had been given the best present in the
And I had.
Staying here with my darling means everything to me and its the best present ever.
Wednesday it really hit me how much how much Richie loves me and how much I love him.
Been very emotional and very happy too.
Friday, October 24, 2008
We don't need to think too deep and hard about what this life is all about.
Life is about here and now and living and enjoying this time.
That's what matters enjoying what you have.
Not worrying about things we can not change.
Concentrate on the things we can change and influence in our communities.
Concentrate on spreading love and understanding and coperation.
We neeed to remember that we are unique individuals living our lives.
Enjoying our lives is the meaning of life
Thursday, October 23, 2008
Both of us slept very badly tuesday night due to the plastic surgeon coming round in the morning.
His visit almost gave me back the mobility in my legs, as I was so very scared that I nearly jumped out of bed and hid in a cupboard!
The anticipation was as it turned out worse than the reality as instead of immediate removal to hospital the plastic surgeon after a through examination told us that there was significant improvement in a small area of the wound to indicate that the wound could heal in time.
He did not think that a big operation and months in rehab with no guarnatee of success would be a good course of action for me.
So I can stay at home with my darling Richie which is a huge relief for us both as I do not want to waste the good time I have left in hospital.
Especially now when it is becoming clear that I do not have too long to go, hope I am wrong and there is still years ahead with my love.
After the visit which seemed to last forever we spent the afternoon happy if somewhat tired and both slept well last night.
Wednesday, October 22, 2008
In the morning we will hear if I have to have plastic surgery and when I have to go to hospital.
From what Richie says it seems the chances of not going to hospital are slim.
I am really scared so is Richie, we have both cried which relieved some of the pressure we have been under since dr.Smit told us two weeks ago that he wanted a plastic surgeon to give his opinion.
It means two months in hospital and rehabilitation centre, two months away from my darling and home.
Two months of being a patient and two months of being bored of not being able to be online.
Just hospital routine and bad food and being terribly patient.
The saintly human dartboard!!!!!
Monday, October 20, 2008
Wish that healing prayers and pleasant thoughts would help me get better.
Sadly that is not possible with a chronic disease such as MS and especially in the progressive phase.
Doctors are not interested in progressive MS because they can not medicate as the MS drugs available are all for the other forms of MS.
Additionally they can not give a prognosis as to the course of the disease as they can with most other diseases.
This must be very unnerving for the professionals, always strikes me as being abit like the Emperor's new clothes.
Poor doctors suddenly revealed as not having the knowledge we assume they have and suddenly its the Wizard of Oz and behind the curtain there is a man not a wizard.
Both neurologists that I have been to could not tell me anything apart from advise me that cannabis was the best painkiller.
Saturday, October 11, 2008
Listening to pleasant music on fire.fm, its a great free add-on in Mozilla Firefox.
Did not notice the track was sad until my thoughts became very down and gloomy.
When I thought of my immediate future suddenly felt it was not going to go as I had hoped.
Suddenly felt like what I was wanting was being taken from me by this pressure sore.
Luckily got myself out of those thoughts, easy to get stuck there and howl endlessly.
Putting another singers name into fire.fm changed everything.
Feel better and will take it day by day.
Best way for me.
Thursday, October 09, 2008
Saw the doctor and the nurse today from the Rehabilitation Center Amsterdam.
Not good news today, last week progress was slow but was being made.
Today it was clear that not only was there no progress but the wound had got worse.
We got very stressed about it all and now we are faced with difficult choices that need to be made.
We are going to let it all sink in first and then we will discuss it and make a choice.
Monday, September 29, 2008
Still in bed been in bed since 21 August.
Think I am doing very well keeping calm and making the best of it.
Difficult to do but not when you look at the alternative.
Not my kind of alternative.
Do not want to waste what I have.
It's clear from the way my body been steadily declining that my decision to make the best of it is the right decision for me.
You may jump to conclusions today when interacting with others, especially if you are assessing your exchanges from an emotional or biased point of view.
Perhaps you are feeling suspicious of other people's motives or are making assumptions about how you're being received.
If this is the case for you today, it may be because your mind is busy referencing the past and compelling you to get stuck in projections.
Consider focusing your attention on the present moment instead.
Paying attention to what's really happening, rather than getting mired in mind chatter, can help you to think clearly and rationally so you can form appropriate conclusions.
Staying present allows us to process information rationally during our interactions with people.
Being in the moment frees us of the mind's tendency to dip into the past or jump ahead into an unknown future.
We can listen attentively and take what we see and hear for what it is in its own context.
The objectivity this affords us allows us to come to more pertinent conclusions.
We can also respond to what's in front of us rather than react from past experiences, our fears, or conditioning.
Stay present and absorb what is happening to you right now, and you will be able to honestly assess your situation and draw more accurate conclusions.
Wednesday, September 17, 2008
This weekend with Angela was brilliant, the best.
Good to see a good friend and spend time together like we did this weekend.
Especially like that we are on the same wavelength and can be ourselves.
Also real good is the way it does not seem to matter how much time has passed between the last time we saw each other.
It always feels like we just saw each other the week before instead of four years ago, like it was this time.
Friday, September 12, 2008
How do they do it I often thought then.
And now I know the how and why.
How they and you and I do it is we just keep going no science involved.
And why because there is no other option.
You find out that what you have is precious.
And the less it is the more value it has.
Wednesday, September 10, 2008
Everyone wants me to get better but I won't sadly.
I will only get worse.
This is a degenerative disease.
I was fortunate to not know that I had it for quite a few years.
Have adjusted to a life that is dramatically different from my/our life before.
Now I can do nothing for myself, can't even move my toes anymore.
Can only move my arms and type with one finger.
Richie does everything, gets me out of bed with a hoist.
Showers, dresses and helps me with everything.
Now he dresses the pressure sore which has me confined to bed until it heals.
Been in bed for 3 weeks now and have another month to go.
But I will not give up on my life and our life together.
Richie is brilliant looks after me with such love.
Despite this horror that has come into our happy life and turned it all upside down
we are still happy together.
Diffícult for us both, Richie works hard and has to cope with seeing me get worse.
Plus the frustration of not being able to do anything to change things.
Also difficult for me, alot of pain all the time and being so dependant for
I make the best of everything and I still have the best.
My beautiful darling Richie who I love so very much.
And who adores me.
He fills my life with love.
And I love him back and let him know how much everyday.
So you see its horrible but we have our great love.
And we certainly make the best of everything.
Monday, September 08, 2008
Have been in bed for three weeks now have lost track of time.
Had to look at the calender on my phone to see the date when the wound nurse told me had to stay in bed.
That was 21st of August.
Seems light years away but is only three weeks ago.
Have been told that I need to stay in bed for another month.
Would have gone mad without Richie looking after me so well and with so much love.
He is my darling and makes my life so good.