Horrible awakening today by the telephone which stopped as soon as we were both awake.

For me being awake meant that I could instantly feel all the pain again and as it is alot it felt like a tidal wave had come over me.

Started to sob quietly but not too quietly for Richie who was over sitting by my bed right away stroking my head.

After a wee while my tears stopped and Richie started to massage my feet and legs and then gave me some thc.

Then Spike was put on my bed for our morning cuddle which is very important for both of us.

Once we had our morning cuddle I took the three baclofen tablets and the food supplement and some more thc and I was set up for the day.

It is a fine day, sunny and blue skies and warm enough to have the window open for abit.

A lovely earlpy spring day.

Lovely morning today bright and sunny with gorgeous blue skies made me really happy especially as the morning routine helped again.

Last night just before Richie turned the light off he kissed me and I started to cry, could not have been able to put it into words.

It was of course the whole situation, having to cope with the fast progression of this horrible disease.

That is so very difficult and more each day as I see and feel the effects of the progression of the MS.

What is worrying me is that the disease is moving forward so very fast that it is difficult to come to terms with.

If only the MS could stop progressing for abit but there is no let up and I have to eventually accept that I will lose what I can do now.

At some point swallowing, talking and sight will be difficult and indeed not functioning any more.

At least I am in a better situation than Debbie Purdey in England who is forced to go to the Dignitss euthanasia clinic in Zurich earlier as then she can still travel alone.

If she waited until life became too difficult she would not be able to travel alone and anyone helping her travel could get taken to court and prosecuted for helping her die.

At least here I can stay at home and when I decide enough is enough I can get our lovely GP to come and help me, I don't need to go to Zurich I can stay at home.

It is not my favorite topic would rather be alive but not when I can no longer be fully alive in the way that is acceptable to me.

Slept until 11 am, I had been woken by my arms going mad but somehow slipped back off to sleep again.

Soon noticed the pain again as soon as I was fully awake, some decreased as soon as Richie massaged my legs.

He got me a hot water bottle for my legs, another bag of THC and my food supplement drink and several kisses.

Feel a whole lot better now, really pleased with myself that I do arm exercises every morning even when I do not feel like it.

They are so important for keeping my arms working for as long as possible, really noticed the difference once I was doing them every day.

It is a pleasant day, every now and then big clouds come over and it looks like it is going to rain big time.

Only for the clouds to blow over and the blue skies and brilliant sunshine are back again, it is typical Mqarch/April weather.

The dogs are happy today well certainly get cheerful and lively as soon as the sun is shining and the clouds have gone by.

Was sweet having Spike on the bed, he loved having a head rub a3nd a tickle behind his ears, he is a sweet little dog.

Started having a few what if thoughts but have decided again that as I can’t know until what if happens so whenever what if pops up I just think later.

It works well.

Lootsstraat, Amsterdam.

Horrible weather today really overcast and raining this is reinforced by both of the dogs being resolutely curled up in their beds.

My pain has been well managed as it is every day by tlc, thc, massage and baclofen so did not have too long to moan in pain.

The dogs are a great entertainment the day started with the dogs greeting us and getting patted and their tummies tickled, today they were both on my bed.

Halfway through I alerted Marleen to a pigeon on the nuts and she flew over to chase the bird away, by golly she was full of it after that, a very proud little dog indeed.

The bird did a slow double take as Marleen leapt up at the window and retired into private life and flew off at top speed.

What was also funny was Spike’s shocked and almost heartbroken reaction to Marleen being up on my bed instead of him.

He kept jumping up to look at us and each time made a mournful sound that sounded abit like a sob, poor wee doggie.

How could we do this to him when he is the important dog, poor thing!

Wonderful news, the weather is getting better, it’s brighter and the rain has stopped which means the dogs will start to get lively.

Perhaps I will activate them and get them playing around me which I very much enjoy as they do too.

Tonight Scotland play The Netherlands at the Arena here in Amsterdam hope Scotland win as that would make Richie so very happy.

Be like an early birthday present for his birthday on 14 April, we are exactly a month apart going to make sure it’s a great day for my darling.

Wow the sun is shining what a wonderful turn a round of the weather it has gone from unpleasant to really lovely and now clouds are coming back.

Classic early spring weather and the clocks go back tonight so tomorrow we have an earlier start and an extra hour of daylight.

Slept til 11 am after I had woken up at around 7am and got Richie to get a bag of thc for me.

Went back to sleep despite someone ringing doorbell and phone one after the other, the next thing I knew was Richie coming in saying 'good morning darling it is 11 am'.

Soon noticed the pain again as soon as I was fully awake, some decreased as soon as Richie massaged my legs.

He got me a hot water bottle for my legs, another bag of thc and my food supplement drink and several kisses.

Started to feel better and could begin to start my day.

At around 2pm a dear friend Grainne came to visit which was delightful.

Her visits always stimulate me and give me alot to think about and afterwards I am bucked up and feel good.

While she was here it got very sunny a lovely friday afternoon.

Despite feeling really shitty today have had a good day, its winding down now and dark rain clouds have drifted past.

Remember how I hated the weather being lovely all week and as soon as it was friday late afternoon it would start raining.

Happy wet weekends, now would take any amount of rain if I could get down the market again.

Got quite worried late afternoon yesterday and was winding myself up luckily realised that I was giving myself a hard time.

Dreadful that I have to be so critical of myself, whenever it becomes clear that’s what is happening I can back off and can stop berating myself.

Realise time and again that telling myself off is time consuming irrelevance and could better be nice to myself and just do what I can.

The result of telling myself off is that I lose confidence in my ability to do anything, that I feeI can't organise, can't deal with the post and pay bills.

Feel useless and can't seem to get out of that feeling so today is the start of my changing that too.

Accepting that my mobility has gone and I need help with everything is difficult and coming to terms with that has been hard.

Worse still is not being able to do much with my hands, the lack of flexibility and feeling and sensation in my hands is really hard to take.

Can feel pain but nothing more subtle than that which is a huge source of frustration for me.

Can't open my purse and get money out, can't open a letter and unfold the contents unless I rip the envelope open with my teeth and laboriously fold open the letter also using teeth.

Can’t pay bills online without Richie’s help need him to put the card in the card reader and put the codes in, hated that happening that couldn’t do that on my own anymore.

It’s been one thing after another and all very hard to deal with try to celebrate what I can do and not to dwell on what I can’t do.

Easier said than done, have to laugh at that, it is almost painful laughing just not which gives it an additional frisson of excitement!

Jacob van Lennepkade, Amsterdam

These pictures are of the canal at the end of our street Richie took them yesterday on his way to the Vondelpark.

Today feeling reasonable after waking up from an incredibly deep sleep to totally wide awake and in pain.

Felt extra painful today and took three bags of thc before the pain subsided and I was able to relax.

Now do still have the painful twinges but notice that they have moved around again, quite a relief to me.

Always think oh dear that's unbearably painful perhaps need to tell the doctor about that only for the pain to decamp from my chest to my elbow.

A major problem is suddenly a painful cramp in my lower arm and not a chest and breathing problem.

Do not know if wandering pain is common thing that everyone experiences, know now that rapid temperature changes is one of the MS effects.

As are spasms and cramps and all the strange tingles and electric currents and the pricking and slashing pain as well as feeling on fire.

Major one is the MS girdle, that feeling of having a corset on that is being pulled tighter.

The other thing that I have are strange sensations on my head and scalp best described as the hairs on my head standing on end.

Oh well it is a strange illness really hope that someone will find the way to stop the progress of the disease and from that come up with a cure and prevention.

I know that even if something were found now that it would not help me wish it could as am not sure that I can cope with this steady decline that is happening to me.

Takes so very much to keep positive but its my only choice as to do anything else would mean more pain plus depression which I hear is a major factor with MS.

My choice as always is to be positive and to make the best of it all and to enjoy today.

Thanks for all your support it really does help, it is good to give and receive support good to be part of a community, a supportive network.

Last goodbye to Nick Leslie

Today is the cremation of our dear friend Nick Leslie who died a week ago yesterday.

Still can't quite believe it that he has died and will not be coming round to visit us again.

Last night I cried for the first time as the realisation grew that it was no strange joke that he indeed was dead.

A tiny fragment of a performance he gave on 30.1.2009 can be seen on Richie's blog


http://screamingrichie.blogspot.com/

The cremation is at 13.15 this afternoonm afterwards there is a wake at the Cameleon Theater where Nick often performed.

Should be alot of people there to remember Nick and say their last goodbyes to him.

Goodbye Nick.

A pretty good start to the day today,I woke up and had several minutes before the painful arm cramps happened.

Richie got me some thc quickly which took the edge off the pain and then he massaged my legs and once that was done and I had taken the morning baclofen the day could begin.

Not such a pleasant day today, it is very cloudy and looks like it will rain, as I was typing it started to rain.

Tried to read the news but found that the only news there was is about Jade Goody's death yesterday.

Some seemed to suggest that her dying on Mother's Day was significant which it was not, to me it meant that her cancer had become terminal and terminated her life.

One person actually wrote in to suggest the Mother's Day be renamed Jade Goody Rememberance Day.

Incredible!

All this media all because she was in the Big Brother House in 2002 and was able to milk it and earned millions being identified as thick but kind of cute by the media.

Even Gordon Brown and David Cameron sent their condolences am now waiting for her to be given a medal posthomously by the queen.

Perhaps the 22 March could become a public holiday known as Jade Day, sounds a brilliant plan to me.

Amazingly slept until 11 today had a quiet wakening actually woke up and had a few minutes respite before I felt all the pain.

It is strange how I have lost all feeling and sensation in my body but pain is always felt.

This morning enjoyed a few pain free minuted and then it all came flooding back, instantly the painful buzzy tingling started and very quickly had gone into the electric shocks and burning and pin pricks.

In some strange way it is easier to deal with now I know what is happening, just say to myself that it is the weird signals MS generates and not that something has gone seriouly wrong with my little finger or whatever else.

It also helps knowing that bags of thc will give me relief from the pain, so as soon as I start hurting I ask Richie to get me a bag of pain relief.

It is all a sort of virtual reality pain but despite that only to bloody real as it is all felt and only too clearly.

What a strange world we live in where there are so many chronic ailments and no cures for them.

The opportunity costs of all the handicapped people worldwide is huge, just imagine what could have been achieved with all those people working for a cause.

My cause as it is everyday is to make the most of what I have and to enjoy it as much as I can.

Thinking about Nick and missing his presence and realising more and more that his absence can not be filled by anyone else.

Wish I had kept his last message he left on our answer machine he always finished by saying ' this is Nick over and out '

I am not over and out yet and am determine to enjoy the day which I will do, the sun has been shining and it looks a pleasant day.

There have been the relaxed sounds of weekend in Amsterdam outside coming in softly through the double glazing.

Lovely going to sit and enjoy.

Another lovely day, sunny and blue sky but a touch on the cold side I am told.

Woke up quite slowly today which was pleasant, only to instantly feel all the pain as soon as I was awake.

As my whimpers got louder Richie reacted quickly to my whispered 'please get me a bag' and was back in no time with a bag of vapour.

Afterwards lay here thinking about what a strange life it has become for me where all I can do is lie around.

Difficult to accept that I do not have any balance left and can only sit because the bed can be put to a sitting posistion.

Mind you have not been able to really sit up properly as that would put too much pressure on the area of the sore.

Find it really difficult to adjust to a life so handicapped as mine is now, really can't believe it has happened so fast.

The pressure sore has helped accelerate the process so it is vital people do everything to guard against pressure sores.

Here I am slumped in bed now for 7 months, think that I am doing very well staying so cheerful.

In between times I cry my eyes out and bemoan what I can't do and then try and calm down and get on with it again.

It works but hurts but really aware that enjoying the moment and making the most of things was important as moments go by so quickly.

Became aware of moments getting away from us when I heard the sad news on Monday that our good friend Nick Leslie had died.

Have been quite shocked at the news especially as had been hoping to see him on my birthday.

Saw the dear man for the last time on the 30th of December when he came round for a visit, its a really odd idea that we won't see him again can't believe it.

Started to accept its true since the details of where the cremation will take place was sent in an email yesterday.

It said Nick Leslie had died this Monday, he was born same as me in 1951 and died age only 57, Nick was 7 months younger than I am.

This afternoon I shall especially enjoy as I think of our dear friend Nick and fondly recall amusing memories of the wonderful man.

Nick dying reminds me again how short life is and how good it is despite this fucking handicap, and even despite our lives being so comphrehensively demolished.

Happy to be here with my darling Richie this beautiful sunny Saturday.

Beautiful day today very sunny a real spring day which is lovely especially as I can begin to enjoy it now my pain has diminished.

Its almost impossible to adequately describe pain, all the time I have this strange tingling feeling going up and down my body starting in my toes and going up and down my body in waves.

First it’s a tingle then it feels like electricity then it gets hot and feels like pins are being stuck into me and shortly after it feels like hot slashing pain and then the whole thing from the start.

Added to that the sudden spasms in my legs which make me feel that I have been kicked in my lower back and the arms cramps which makes my arms become rigid and clamped to my body.

All of it bloody horrible and sadly nothing that I could prevent or stop by meditating or breathing slowly although these are good things to do they do not give me relief from pain.

Luckily I can use cannabis which is vaporized in the Volcano and I use bags of THC which I inhale.

Cannabis is an excellent pain killer, appetite enhancer, relaxant as well as a good way to get to sleep.

Would rather use this plant than alot of pharmaceuticals where you have to take two extra tablets to control the side effects of one tablet.

Tablets have such unpleasant side effects they can make you so drowsy and incapable of being able to take part in life that I decided not to use them.

Have just had several bags of thc and the pain has diminished considerably so I can start to enjoy the day.

The sun is shining and its a lovely day today and a great week for my birthday.

On Monday as a pre birthday present a parrot appeared on the bird nuts which was brilliant as they have not been here during the winter.

They are lovely birds and seem very unworried by me fixing me with quite a look down their beaks.

They seem to understand that the dogs can't get to them with the window closed so seem to have no worries with them being there.

Love the weather geting better as I really needed something to cheer me up and give me hope that spring is happening.

Hope I too will have a spring renewal and be able to get out of bed again soon as its getting to me quite abit.

I do cope with it but its at a price,noticing recently that it is quite a high price as it is not only time but quality of life and enjoyment as well as strength and body function.

In 20 minutes my occupational therapist is here, she has been so very helpful to me, she is a good woman who has alot of empathy with people and puts herself in the other persons position.

She is here so we can discuss cushion and wheelchair adaptions and talk about the bed and any other things that could improve my life.

Sure it will be a positive discussion and knowing Ludwine also a productive one.

My birthday

Enjoyed my birthday very much yesterday good friends came round bearing flowers and gifts and we drank pink prossecco.

Got heaps of birthday greetings from my blogger friends which was really lovely, thanks alot really made the day for me.

The sun shone brightly inside and out it was an excellent St.Patrick's Day.

St. Patrick's Day and my Birthday!!!!!

Its St. Patrick's and my day today, we have always had the policy of celebrating my birthday over several days sometimes even a whole week.

St.Patrick's and my day together could not possibly be adequately celebrated on one day only.

Looking forward to a bunch of friends coming round this afternoon, Richie is making cakes.

I am quite excited about it all and even the weather got in on the act with wonderful sunshine.

I have had my birthday cuddle with Spike and Marleen has rolled around on the floor by my bed and now they are showing me how delightfully they play together.

Its my birthday and life is good!

St. Patrick's Day!

Last night was difficult to fall asleep tried my best but nothing worked, finally in the early morning Richie went to the WC and I asked him to get me a bag of THC.

Inhaled it and drifted off right away which was great, woke up at 9 am much too abruptly.

Tried my best to dream again and succeeded only to find myself in a cheese shop near where we used to live.

It was so realistic I could smell the cheese and suddenly the thought bubbled up that I would never go to that shop again or to Gerda's the exquisite flower shop or go to Nick's veg shop or to the Xtreme coffee shop.

Started crying then and could not stop for ages at the thought that my memories were what I had instead of going out and making new ones.

The memories of going to these shops in the past flashed past, queuing in the very popular cheese shop and then when it was my turn getting to taste everything I bought.

The cheese shop owner loved customers who were willing to try something different the baker preferred me coming back for favourites and the flower shop loved its customers as did Nick and his partner Ron at the veg shop.

Difficult suddenly getting all the visual memories this morning made me so aware of my current situation.

Strange how the pleasant dream got so sad but it's difficult to contemplate the idea that I will not be alive for too much longer.

The idea having to say goodbye much too soon to my darling Richie, the love of my life is bloody hard.

Just typing that brings tears to my eyes and when I reread later it will make me cry again.

Even glancing back now makes my eyes start to fill up again, can't help it just happens.

Am aware that I can not stay in this sad train of thought it’s all in the future and have to get myself back into the present the here and now.

Richie made a delicious soup at lunchtime; the fysio came at 2pm and made me sweat as usual.

Afterwards I enjoyed the room being bathed in sunshine it was beautiful it helped me get back to the present.

Tomorrow is my birthday Richie is baking a cake and a few people will pop by to raise a glass and eat some cake.

So have finally successfully dried my tears and looking forward to tomorrow and my birthday on St. Patrick's Day yippee!!!!!!

What a life!

At first woke up gently and as I savoured the moment a huge spasm got me by surprise and I howled in pain.

Then as I tried to breathe deep to try to relax, my back, neck and shoulders became very painful and one cramp followed the other.

Tried to do my arm exercises in the hope that they would have an effect, they did but not the one that I wanted.

Was bloody awful made me end up whimpering with the pain, poor Spike ran next to my bed and was calling to me.

Richie had already corrected my position in bed and pulled my top out from where it had creased up under my shoulder blades.

Although I can't move my body it is constantly shifting around so regularly lie in a banana shape.

From the waist this is leaning to one side and the top of my body to the other side and my neck trying to compensate.

Because I have moved the top gets wrinkled and like the Princess and the Pea this I can feel which is amazing seeing as there is so little sensation in my body.

Richie got me a couple of bags of THC and that did the trick finally the painful cramps stopped.

Then Spike came up for a mega cuddle and Marleen was down at the foot end of the bed something Spike tolerated this time as he was up by my head licking as much of my neck and hands as he could with the odd one on my face.

The morning cuddles with Spike do us both good and afterwards we are both happier and Spike and I have bonded.

Feel alot better now Richie has massaged my legs and I have had the morning baclofen and the food supplement chocolate drink.

Strange awakening so quiet one minute and so very painful and loud the next then tears and sobbing to now where I am ready for Sunday to happen.

Hate all this crap hate that I am crying because of the pain that I constantly need to be moved round in the bed.

That my only movement is being able to pull the top of my body off he bed until just under my shoulder blades apart from that and arm exercises I can not move at all.

These days I feel like a talking head with a disembodied body it’s a weird feeling one that I still can’t cope with too well.

My solution is the head in the sand one I try not to look at myself as that upsets me so I only look at my face.

And even that gets me and has the tears rolling down my face as I contemplate again how much I have lost.

It hurts like hell and then like now once the pain is expressed I can get on with everything else.

What a life but still it is mine.

Life's pearls.

What a different day it is today, started off really lovely with gorgeous sunshine but since then its got more cloudy and overcast and now there is a grey ceiling over the city.

Now I really believe spring is on its way as we are getting the grey ceiling days oh well who cares when we have sun in our hearts.

Hope Amelia is getting some sun in Devon and her pain is getting less, be brilliant if it were getting better really hope so.

Please visit her at http://talesoflifewithmultiplesclerosis.blogspot.com/2009/03/strange-numbness-but-its-painful.html

Been thinking about her lots, if only we could achieve things by the power of thinking we would all be well.

Mind over matter sadly does not cure us of this horrible disease its a shame as we all have to assert ourselves daily against MS.

Nothing can really prepare you for this and maybe thats ok, would I have wanted to know what was going to happen to me.

Would I have wanted to know that I would end up having to be in bed for over 6 months its now 7 months in bed.

All I can do with my hands is type and eat and drink all very important and actually very pleased that I can now use my left indexfinger to type at the same time as the right index finger.

I do arm exercises when the fysio is here I use weights

Have not been able to sit upright since I am in bed could not do it at first as the sore was too deep to permit me doing that.

So have been sitting abit slumped which makes eating and drinking difficult.

Been having to lie around is not so easy really aware that its not good fo0r the body all the more reason to do the arm and shoulder exercises.

Very important that Richie massages and moves my legs every morning and the fysio comes twice a week and that every night I use the motomed.

An excellent machine keeps the blood ciculating,stops feet and legs getting swollen and promotes healing and is good for my spirits.

http://www.motomed.com/

Difficult to stay optimistic and cheerful now I can do so little but there is no choice asa to do anything else would be so very bad for me.

Being cheerful and opimistic and enjoying what I have is the only way I can go the other option would be so very bad for me.

It would kill me so really my choice has been for myself,purely selfish and in my own interest.

Its also very good for Richie and I and makes the time that we have so mcu better, this does not mean that I don't have down days cos I do but thats life in all its beauty.

Love life perhaps even more than I did hope that I can keep feeling like this and keep enjoying my life despite the shit.

Heres to the pearls of life.

Does anyone know how to delete a blog from Blogger?

Want to get rid of testlab as do not use.

New catheter.

Slept well again last night despite the doctor's appointment today, our GP is coming round to change the catheter at 12.30.

As soon as I woke up this morning I was moaning with pain which Richie remedied with a bag of THC and that helped me off to dreamland again.

Sadly could not get the doctor’s visit out of my head and had to finally acknowledge that it worries me.

And yet it is not worrying Dr. van Wijngaarden is a very good doctor who knows what she is doing and does it well.

It is not a painful procedure and yet it is not me favourite thing, would love to phone and cancel arrange another date but that would only postpone it to another date.

Then I would get to fret and worry and even panic slightly all over again.

No won't do that just have to let it happen and once it is done I won't have to think about it for another two months.

Instead of concentrating on the doctor’s visit I will think about my dear friend Anja who will be visiting this afternoon which is a nicer prospect than the doctor.

12.30 the doctor was here and before I knew it she had installed the new catheter and it was all done and dusted, what a relief!

The sun is shining brightly and Richie tells me the weather is mild so will be able to open the windows in a minute and enjoy the balmy air wafting in through the windows

Here's to life.

Not such a nice day as yesterday today it’s grey and raining, well drizzle hours of drizzle.

Not an inspiring day not like yesterday but it is a day for doing things just a shame no sun.

Yesterday was pretty upset that Ton, the nurse did not have a good report about the sore, he measures it every time.

Was so hoping for that special birthday present for coming Tuesday just have to get off it now and pick myself back up again.

No point crying before I need to cry but it did knock me for six yesterday will have to be patient and wait which I find so very difficult to do.

Oh well perhaps its good news next time Ton visits let’s hope so and in the meantime I am going to enjoy today sun or no sun.

First I have my fysio session where I will do lots of arm exercises and then Mathilde moves and massages my arms.

After the fysio session Anne and Cecile will visit, Cecile will bring a bottle of prosecco left over from her birthday party.

We will drink a toast to life and friendship.

The sun is shining.

Spike asked to go on my bed this morning for a cuddle which was very sweet of him, its good to bond with the wee dog.

Perhaps he picked up that I am tense as its wednesday again, the day Ton our wonderful nurse from the RCA comes to check on the progress of the pressure sore.

Hate the prospect of the visit more than the actual visit itself, especially like the times when there is good news as there was at Ton's last visit two weeks ago.

Quite consumes me with nerves as to what he will say this time, has it got smaller, less deep??

Will have to wait another 15 minutes to hear the news good or less good news.

I hate waiting and am no good at being patient I hate it, but guess that waiting and being patient are big elements of having MS grrrrrr!

Well sadly it has not got noticeably smaller, it is however very clean and healthy looking, so all the right conditions are in place for healing to take place.

Was hoping for good news for my birthday on 17 March have to be patient a wee bit longer.

Richie is making some potatoe crisps to cheer me up and there is a delicious tofu and noodle lunch to come and maybe Richie will make a fruit crumble and custard.

Determined to move along despite it not being the news that we wanted, the sun is shining and the dogs are happy and so am I.

Ready for the day....

Horrible abrupt awakening this morning at around 8 am a very painful leg spasm woke me up.

It felt like a mule had kicked me in the back, which was very unpleasant indeed.

Tried all sorts to try to head off further spasms and either drift back off to sleep or get into that lovely dreamy place I got to yesterday.

Sadly this seemed impossible as one painful spasm followed the other and every tiny movement and even me lying totally still did nothing to change or stop them happening.

A very unpleasant way to wake up and we are both abit knocked around by it, especially as it got kind of late last night gone 2 am before Richie turned the light off.

Because of my waking up yodelling with pain at 8 we probably only had 5 hours sleep which is not quite enough.

As soon as I could did my arm exercises and after that Richie massaged my legs and now I am ready to face the day.