Brilliant Visit.

Slept badly last night, think I was overtired, after yesterday’s meeting to evaluate the adaptation on my wheelchair.

Yesterday was too much for me, also for Richie, my mind was still too busy thinking about the meeting when Richie turned the light off.

Felt out of sorts today, could not get moving and found that I could not do anything this morning.

This afternoon was totally different which was wonderful; finally I was not in bed for most of the day.

I sat in the wheelchair for 5 hours, got up at 3 pm so Richie could give me a shower and was ready and waiting for our visitors just before 5 pm.

Brilliant visit from Gareth and Paul and for the first time since early August last year I was in the front room to greet them which was really good.

It was lovely to see them in there for a change, instead of in the bedroom, it was really enjoyable.

Nice to see our two lovely friends again so soon, they were here on a visit on 16 to 25 November.

Sadly a very good friend of theirs Rob, died just a week later, they came over on Monday for his memorial service on Tuesday and funeral on Wednesday this week.

Really heartbreaking that Rob has died so quickly, his long term partner Steven must be heart broken without his darling.

What I find the saddest is that they were going to get married on December 7 th and Rob died on the 3rd of December.

Very sad, shed a few tears thinking of them both, two very sweet men, Rob had the most beautiful deep-set blue eyes I have ever seen.

I did not know them well, had the pleasure of watching the Gay Pride Boat Parade in 2003 with them and Gareth and some other friends of Gareth’s and Richie and I.

We will not forget Rob, I am sure that I will think often about him and Steven, and keep him alive in our thoughts.

Good to remember but important to live in the here and now, and enjoy the present.

Looking forward to sitting again tomorrow, now the support has been modified under my arms; I can sit without discomfort and look forward to doing more each day.

Father Cristmas in a Helicopter.

Robert Maplethorpe.


http://en.wikipedia.org/wiki/Robert_Mapplethorpehttp://www.mapplethorpe.org/


For the first time in days I just saw, the sun breaking through the heavy layer of clouds, and it is gloriously beautiful.

Hope it stays like that, when Richie pulled back the curtains this morning, there was beautiful blue sky and sunshine, but within 5 minutes the cloud layer had reasserted itself and there was no trace of either sunshine or blue sky.

If we had not caught that brief moment and had opened the curtains a few minutes later all we would have seen was an overcast, gloomy cold day.

It is starting to cloud over again now, but how lovely for the clouds to have dispersed briefly and for there to be glorious sunshine, even if only for minutes.

Really lifts you when that happens, that is the beauty of being open to the here and now, it is then you will see things like this and appreciate them.

I do now, whereas previously I may have said oh only a couple of minutes of sun is hardly worth is, but it is,

Sounds like the glass half full or half empty, too often in the past my glass was half empty, not now, now my glass is at all times half full and ready for a top up.

Any excuse for a party is happily taken up, visiting Trinidad that one time in 1997, did me a power of good.

It reminded me where I was from and what it was like out there and the personalities and of course the many nationalities, how cosmopolitan it was out there.

Lovely to see so many different peoples co-existing so happily, it is wonderful; to see all the groups celebrate their big holidays together like Eid and Divalli.

Everyone has candles lit on their verandas on Divalli and everyone celebrates Christmas by watching Father Christmas arriving in a helicopter on the Savannah.

Father Christmas used to give all the children an apple from Canada, Christmas in Trinidad meant big beautiful red apples, and we were delighted with this treat.

Stopped there to have a wash and get ready for the experts coming around, on Tuesday I had asked if 3 people could arrive at 14.30 instead of all 6 arriving at 14 pm.

They all agreed and staggered their arrivals, and it worked out very nicely.

Elwin checked whether the chair gave me adequate support, and Ludwine checked that my pelvis was positioned correctly.

They all agreed with me that there were a couple of adjustments that were needed.

Elwin did a couple today, but has to come back on Monday for the last one; he took some of the support away under my armpits as it was not needed plus it was hurting me.

After he does the last adjustment on Monday, I get to ride around in it and they will all be back in January for the final evaluation.

Feel happier about sitting now these small changes have been made, it has instantly become less of an endurance test and more of a pleasure.

Feeling extremely tired now, I sat in the chair from 13. 30 until 18.30 only 3 hours but it felt like even longer.

Richie has been a star today, he got up early and took the dogs out and then came home, did my leg exercises and leg massage and gave me my baclofen pills.

He then hovered and spruced up the apartment, before getting me out of bed and washed and dressed and ready for the appointment.

Not long after 16 pm they all left and I did 40 minutes exercises at the Motomed and chatted with Richie in the front room.

The red Christmas tree looks even prettier than last year, and the dogs and Richie and I were excited that I was in the front room too.

Back in bed tired just after 18.30 pm, we are both looking forward to a pleasant relaxing evening now, one that Richie and I have earned.

Tante Herrad. and The Van Gogh Museum.

Georges-Pierre Seurat

Slept surprisingly well last night, which was very welcome, painful spasms and the containers being emptied outside woke me.

The spasms were horrible, plus every time I tried to straighten my arms they cramped up, it felt like an electric shock.

Tried to but could not hold back my tears, and pretty soon I was sobbing, my darling Richie was straight by my side, stroking my arms and head and kissing me.

He got me some THC and once I had inhaled a few bags and Richie had drunk a cup of coffee, I did my arm exercises and then Richie did the leg exercises and massage.

Not too long after I was set up for the day with my laptop and the phone, which rang.

It was the friends of my auntie Herrad’s from Spain, they wanted to come by and bring me a letter from her.

I tried to explain that it was really not convenient for them to come around; until they explained they were leaving on Friday.

I panicked and said to come round, then but really just for a minute to leave the letter.

Really did not want to see anyone today, as we had planned our day, but found it hard to say no.

As soon as I put the phone down I wished I had said no, especially as Richie was very upset, he has a lot of things to do today.

He had planned to clean the apartment and decorate the tree as well as go shopping and of course take the dogs out.

Plus today we had planned to get me to the bathroom early.

I am upset that I have unintentionally upset Richie like that.

Keep forgetting that I do need to consult with my darling, so I know whether he can cope, also this gives me time.

Forget Richie can’t do everything, for me he is my hero my super hero.

Tomorrow is going to be very stressful with people being here for the second time because of the adaptation to my wheelchair.

6 people, four of which will stand around and watch as I am put in the wheelchair with the hoist and then put in the correct position.

This involves me being jiggled about; Ludwine will check the position of my pelvis and everything Elwin doe she will check to see if it is alright.

Just as I was typing that the visitors arrived, they stayed long enough to leave me a letter from Auntie Herrad and to give me a small box of chocolates and then they left for the Van Gogh Museum.

I rang Herrad right away to let her know that her friend’s had visited, which made her very happy.

Fine Visit From Marianne.

Henri Matisse.

Fine Visit from Marianne this afternoon, it was good to see her, it was the first time in three weeks.

On Sunday she called me very upset, she had just got back from a weekend at her sisters, and her two cats Ted and Lewis were ecstatic to see her back home.

Both were being stroked by her, Ted was rolling around happily enjoying the attention enormously.

Suddenly he let out a horrible noise and went limp and was instantly dead.

What a horrible shock for Marianne and Lewis, she stayed home yesterday, so she could try to get over Ted’s death.

Glad she took the time for herself and also good for Lewis, who was extremely upset and sat all day by the spot his brother died.

Really happy Marianne rang me on Sunday; she is good like that she has always treated me normally.

Glad she did not think ‘oh, better not worry Herrad, with her handicap’; despite only knowing me like this, she has always treated me like a friend not a handicapped person.

She is a fine woman, glad we have met and I have had the opportunity to get to know her.

Brilliant that both of us were looking on the same day, me for a volunteer and Mariane wanting to be a volunteer.

It was serendipity.

An Emotional Week.

Been thinking today about life and living and how we all take it for granted until something happens.

Like a progressive disease where suddenly everything is very different.

Little did I know on that July day in 2006 that within the year I would become so handicapped, and that our lives would be altered so very dramatically,

Remember that just before my first MRI I had a feeling that everything would not be ok, that this could be something that might not be mend able.

At the time I thought I would be told that I had a tumour on my brain, these were my thoughts the night we realised Daisy, our dog was very ill.

We could see that she was in tremendous pain and was very scared, luckily we had some pain killers from the vets so could give her some relief that night.

Recall looking at her and thinking that neither of us had got long to live, did not know then that she had precisely two days left.

I think now that I was very emotional that night; it was a horrible shock, our lovely Daisy was suddenly with no warning ill.

This happened on the Sunday and by the Tuesday we had taken her to the vets for the last time.

What an over the top emotional week that was.

On Friday 23 June I went off to the hospital for my first MRI feeling like a lamb going off to slaughter.

I did not get slaughtered but a month later when we went to the hospital for the results, we were told that I had Primary Progressive MS.

We were absolutely shattered, it was Wednesday, 19 July, I spent rest of the week crying and trying to evade the diagnosis.

By the Saturday I decided to get my head out of the sand and get some information from the internet.

Discovered that there was plenty of information, there were also plenty of diets and plenty of sites offering miracle cures.

Most of the information did not seem to be underpinned by much scientific research so was of little use to me.

When I discovered that I could not get into the newly built supposedly accessible local swimming pool I started this blog.

http://accessdenied-livingwithms.blogspot.com/2006/10/access-denied-living-with-ms.html

That was on 4 October 2006 and my first post was incredibly long, reads now more like an essay rather than a post.

It was interesting reading my first post, glad to see I did not write why me, then as now I think if not me then someone else and I could not wish this on someone else.

I do wish that a cure was found, or at least that the cause was known and a cure was being worked on.

Neither of those things is sadly true, it is amazing given how long people have been suffering from MS that we are no nearer to a cure.

But maybe there is no cure, we humans do tend to think we can cure everything, if it is broken we will fix it.

But perhaps we can not fix everything, we think because we have reason that this elevates us to something better than the other animals.

Shame that we think we are so superior.

Perhaps it would be better to acknowledge that we are animals, intelligent, social animals and instead of wondering about the meaning of life we should get on with living, and living in the here and now.

We need to recognise that we need each other and that the best way for us to live is to look after and nurture each other that in my opinion is the best way to ensure our survival.

A Wet Sunday in December

Pop Art.

Yet another grey and extremely rainy day, so rainy the dogs do not seem keen to be outside today.

Slept without problems last night which was very pleasant indeed, had been concerned that it would not happen and I would have to wake up my darling Richie for THC.

I did ask him for some THC when I woke up too early this morning, luckily I slept again as soon as I had inhaled the vapour.

Don’t the weekends go quick one minute it is Friday and then before you know it Sunday is here again,

Had not expected it to go nearly as quick as when I was still working, when Monday always seemed to come round at top speed.

Weekends seemed to last for minutes compared to the days at work, guess going in earlier than I had to must have made it a longer week.

Always thought it was good to be in early, so I could get everything organised for 8 .30 when colleagues would be needing the Service Desk.

Enjoyed my job, liked supporting my colleagues and organising cars, laptops, mobiles, conference rooms, lunches and other things they needed organising for them.





Yesterday I got an unexpected award from Jo@ Diary Of A Sad Housewife.

http://diaryofasadhousewife-jo.blogspot.com/

I would like to pass this on to everyone who reads this blog and hope to see it on lots of blogs.

Let us make the circle of friends a big one; I would like to spread the love to all who visit my blog.

Could you please visit the following blogs and leave a supportive message:

http://musingsofacrankycaregiver.blogspot.com/http://screamingrichie.blogspot.com/

http://spinfortunaswheel.blogspot.com/

http//motherofshrek.blogspot.com/

http://talesoflifewithmultiplesclerosis.blogspot.com/

http://www.arrangingshoes.com/

http://kaleidoscopemuff.blogspot.com/

http://bipolarsoupkitchen-stephany.blogspot.com/

http://a-journey-of-another-kind.blogspot.com/

It is very dark now; the rain seemed to have stopped briefly, so Richie and the dogs have gone to the park.

That is good for them, now we will have happy, relaxed dogs which is how we like them, perfect, and there is stew and dumplings and a mince pie (raisins/currant) for desert.

Despite having to struggle to type, my fingers feel like they are glued together life is good.

Have a good new week.

A Brief Glimpse Of Sunshine.

Curious Art.


Last night had quite some trouble getting off to sleep, in the end had to wake Richie up for some THC which did the trick.

Slept soundly after that until 11 am, this morning when I woke up quite calmly unlike yesterday when I had to cry, glad I did as it really relieved the pressure.

Have learned that crying is a good thing, I used to feel bad, feel I was letting myself go, worried people would find me too emotional and therefore difficult.

Now I know that it is best to let it all out, much better than bottling it all up and instead of a few tears it becomes a major crisis.

There was a brief 5 minute or so of sunshine at 1.30 pm and everything looked so pretty, but as soon as it happened it stopped and now it is back to being, grey, cloudy and wet.

Yesterday I went for a roll around in the apartment, up to now I have been concentrating on sitting up in the chair.

Only managed 4 straight hours the once when Gareth and Paul were visiting, did not realise quite how tiring sitting up would be or how much work it would be.

It is gradually getting to feel ok sitting in the wheelchair, we are going to have a good look at my clothes tomorrow.

Saw a few items last night sadly the warmest a really great fleece is too difficult to put on me, hoping Marianne a good friend of ours can alter it for me.

Hope so as it would be great if I could wear it as then I would be pretty warm and going out would be a pleasant experience.

I am a little bit preoccupied today with the guilty verdicts in Italy, in Perugia of the two young people convicted of killing Meredith Kurcher.

As a criminologist I did not hear of any actual evidence to place Amanda Knox in the room when the murder happened.

They seem to have convicted her solely by character assassination.

Hope that this will come out, it is one thing to convict on evidence but another to do that based on conjecture.

Knox's family and friends describe her as a normal all-American girl which is very different from the prosecutions depictions of her as a sex-crazed, hate-filled diabolical vixen.

It is appalling she seems to have been convicted on such flimsy evidence, but I guess they needed to find her guilty.

They need this done and dusted, so the city can get on with its business, its main one, which is students, especially foreign students.

Unless the appeal is moved to another city I doubt whether the case will be reviewed properly, can’t see the Appeal Court in Perugia contradicting the Court.

Suddenly realise it is already dark, I do not mind so much that the nights are darker but find it difficult to accept that the days are so short.

Have a good weekend