Back to moan.

I got a comment months after my last post- thanks Olivia. Ok am I going to do a second post soon? I don't really know. Right now I want to write something again. Last time I got so sad I could not write so I stopped trying- I found myself crying over the keyboard and unable to find words.
When things go wrong I take it to heart. I want to make things good so much that when things go bad I feel the lowest form of life on Earth.
Yes you guessed it- things are crap at the moment and I feel like it is all my fault. Herrad's decubitus wound has opened up again. A pressure sore- it was a monster; if you have never experienced a pressure sore do what ever you can to avoid the experience- my experience of Herrad's is in previous posts but understand that people die from pressure sores- gangrenous holes bone deep. I washed dead flesh out of it everyday for months. It was terrible.
Right now it is just a layer of skin scraped from the scar but it is enough to put Herrad flat on her back till it heals. Somehow it got open again. What did I do?
I think we have stopped it getting infected and it is starting the slow process of recovering. We do not know how long it will take and the spring weather is just starting so frustration levels are going off the register.
By the way I like to put rubbish in my tags just to drag poor idiots to this blog.

Pain and law makers

It has been a better week. Sense of humour still struggling to hit old levels but more is becoming amusing and less is seeming horrific.
Wobbly yesterday due to over tiredness. It was a wobbly and not so good but I knew all the time what was wrong and a good nights sleep seems to have been the remedy. A week ago I would have felt as if it was all a great cosmic abyss into which I am descending. As it is I knew it was a bad day 'cos I was knackered.
I got a big fright yesterday from Steve and BR on http://spinfortunaswheel.blogspot.com/
Subsequent posts have proved more optimistic but at the time it hit me just how fond I am of these two men.
I am so angry that prejudice stops BR getting the medication he needs. I see how Herrad gets relief from THC vapour. The THC reduces the spasms that cause the pain- other painkillers numb out some of the pain and a big chunk of conciousness. We use weed 'cos it works and because the Professor of Neurological Medicine we consulted recommended it.
It is strange that Americans are refused the best treatment available when it is herb that grows for next to nothing.
Rationality must prevail over prejudice and the law must change. I do not care how it is organised- I would not mind if it was the Devil incarnate or even Donald Rumsfield got the contract to supply but MS sufferers must receive the relief! The position of the US in world politics allowed small town prejudice to get weed put on the UN narcotics list- time for the supertanker of US opinion to turn round and bring about the change MS sufferers need.

Sad

Sad... even America only guarantees the right to pursue happiness. Civilization gives us a false sense of mastery over our environment when in reality we are only elements within it. The forces that control the wider system will continue to operate what ever edifices we construct to resist them . We have to adapt to the environment or we fail to survive. I have adapted to include MS in my environment. How I make a living, where I live, expectations all changed to accommodate the new uncontrollable factor. I have adapted to change and loss so as I can continue with my life and take on the new task of caregiver. I have changed my expectations for the rest of my life. What I can not see is how I adapt to not having Herrad. I can not see how my life works without her. I do not want to decline into lonely old age and increased madness. I do not want to work for some jerk again after this experience. Fuck the future. I don't want it.

I aint getting none!

How do you talk about this discretely? MS has robbed us of sex. Last try (a couple of years ago) caused Herrad immense spasms. It was obvious that sexual stimulation did not cause pleasant sensations for her. It was a shock for her- not feeling like a 'real woman' and such doubts- and thinking about my previous post about partners leaving. Sex was certainly one of the reasons we got together and a very sweet part of our life together. Losing it was painful but we have much more. Too much to lose.
I am not naturally inclined to chastity. I do not want an affair. I have too many friends who have worked in the sex industry ever to want to be a punter. Masturbation, the solitary vice as Baden Powell called it, is my only release.
I find the the commercial porn industry revolting and the amateur sites evoke pathos rather than Eros. It is not resolvable. I am just going to have to put up with it.
I had the offer of a good shag when I was still working- it scared the shit out of me. I nearly cried. I did not even want to but the idea was torment- just knowing I could. In the next month I put on kilos and I ran when ever I saw the woman.
So the spring is coming, the sap is rising and I look forward to another year with out a Donald Duck.
Herrad must miss it too and she is ill and feeling rotten and here I am whining 'cos I aint getting to do the dance of the chipolata like in the good old days. Men can be very sad.

Port of Spain Live

I found a link to a live feed from the Carnival in Trinidad. Herrad is watching the masqueraders dancing through the streets of Port Of Spain. She has even got a slight Trini lilt in her voice. The sun has come out here and we are in party mood.
Jump up!Jump up!- Put your hands in the air!

Is he going to leave you?

When it was diagnosed that Herrad had MS and as it became obvious it was going to be really shitty people started asking Herrad about me. “Is he going to leave you?”
Funny till that point it had not occurred to me that I could. I could not see why I should want to. Herrad and I are a partnership. MS was happening to us. At first I was a bit shocked. How dare people even think I would shit on the love of my life just because things get rough? I would expect Herrad to care for me in similar circumstances. My Dad didn’t get on his bike when my Mum got cancer. He nursed her through the painful last days of her life. He and I may not have always got on but that is something I love him for- he loved my Mum.
I started to read blogs and chat rooms about MS and then found the reason for the questions: lots of men run when it starts getting nasty.
I was a failed comedian with no job, house or visible means of support when we got together. I guess I didn’t fall into the “most eligible” category. Many of Herrad’s friends are middle class. Not every one thought Herrad was very wise to get involved with me. They have known men from their background who bottle it. Cut and run in the cruelest most selfish manner. “Good men”- lawyers, business men and the like. So OK it would not be too strange for a scruffy geezer like me to sneak off- I screwed most things up- why should this be different?
So I decided it was amusing when Herrad’s aunty Sigrid called from Canada every month and asked if I was leaving. She wanted to be re-assured because she had talked to people with experience of this disease and many of them were dumped by their partners.
I am going nowhere without my Herrad. Sigrid now thinks I am quite a guy. She sends me her love now and asks what I am cooking for dinner. If anyone else thinks I am not good enough for Herrad they can stick their opinion where the sun don’t shine. The rank is but the Guineas stamp, the mans the gold for all that.
It is not easy dealing with the hard stuff but I would not to hide. I chose right and I salute all you men and women who have made the same choice as me. Let love rule.

Ahhhhhhhhhhhhhhhhhhhhhhhhh

"Life is long and full of stuff, I don't know what for, I haven't lived enough."
Thus spoke Lux Interior and who could doubt his wisdom!
I think I need a new kind of kick.
I am doing OK. Not as mad as I sound. Only I forgot today. I was in the kitchen and I nearly called "Come here a minute love."

I want "normal" back!

MS is......................... (fill in your own favourite expletive)

Herrad and Spike in the morning.

Herrad woke up crying this morning. I had just roused and went to the bog and stuck the heating on. I sneaked back into bed to find Spike had got there first for his morning cuddle. We settled down under the duvet for ten minutes till the radiators warmed up. Herrad started crying. At first I did not know if it was her just calling out from the pain she goes through first thing but today it had a rhythm and sobs began to punctuate the moans. I went and knelt next to her bed and stroked her hair. She could not tell me what it was that was making her cry- one thing, everything, what ever. I know why she is crying. I ask in case-just in case- it is something I can help with. But I know it is not. All I can do is hold her hand and stroke her hair and hope she feels less sad soon. Spike came over and joined us. For a crazy Jack Russell he can be incredibly sweet and gentle at times like these but even when he is being sweet he can not help but be comical. Soon his presence broke the gloom and then Marlene came to join us and the sadness was lost in a favourite game. Spike loves his ball, Marlene will sit ignoring the ball but only centimetres from it, Spike tries to get the ball, Marlene snaps at him and she picks it up. It can go on for hours. Herrad broke it up this morning by alerting Marlene to pigeons invading our balcony. There were none but Marlene could not resist the call to action,whilst she charged the window barking Spike got his ball back. After all that I forgot to ask why Herrad had been so upset.

Unnecessary Journey.

Tomorrow I will bicycle into the centre of Amsterdam. I only need to go to the local shops and street market but I intend to visit the historic Binnenstaat. Just to remember I live in Amsterdam and not Canvey Island (home town).
When I was working- in the olden days before Herrad got MS- I was walking home from my crappy job (Cleaning up in a sports club) after a pig of a day in a horrible working atmosphere (we had new management every four months on average) the maintenance I had meant to do on my bike had become critical so I was pushing the thing. I paused on a bridge. Suddenly I was aware of what a good deal I had. The sun on the Kaisersgracht. The golden age architecture. Beautiful city, nice home, dogs waiting for a walk,round the Vondel Park home and get the dinner ready. Take the dogs up to the tram stop to meet Herrad. Home, eat dinner, talk, laugh, friends, a walk round the neighbourhood. Home to bed with my darling. Ignore eight hours of work- pretend I am on vacation in Amsterdam!
So I shall reinstate bridge gazing: tomorrow I will go on a day trip to Amsterdam.

This a mail I sent to BBC Radio 5 Live

This a mail I sent to BBC Radio 5 Live on the news that British legal system has failed in its duty of compassion for Mr and Mrs Purdy.
Mrs Purdy has a similar form of MS to Herrad. When the time comes she wants to travel to Switzerland for euthanasia. She wants to know if her man will get jailed for helping her- if he even buys the ticket for the plane he may be liable to prosecution and a period of imprisonment for assisting her suicide. It looks as if Mrs Purdy will choose to die a lot sooner than if she was allowed to organise the end of her life in a compassionate environment. The law does not protect the vulnerable but persecutes dying.

Dear Victoria
I am in a similar position to Mr Purdy but I am a resident of the Netherlands. I am doing every thing in my power to make my wife's life worth living but I know when it comes to the bitter end there is a point of pain and frustration she can not bare.
I know that with help of our trusted GP and a specialist anaesthetist she will be allowed to slip gently from this world in her own bed and my arms. Her pain will end.
I dread that day because she is the love of my life and losing her will destroy me. I have thought long and hard about her life ending but can not see beyond that point. Gordon Brown's argument that I may pressure my darling to end her life for my convenience is insulting to me and other care givers. For years now I have fought to keep her as alive as she can be.
I can see from Mrs Purdy's position the current situation in the UK is forcing her to take that trip sooner than she may have done so as to protect her husband. My darling is now much worse than Mrs Purdy (she could not travel) and I guess if we had to go to Switzerland she would have left me by now. This would be tragic because she is a wonderful woman and still makes a positive contribution to the world. Mrs Purdy should have the time and space to enjoy her life and not spend so much time organizing her death. Her man needs the security of being able to plan. Change the law and be kind to the dying!
Richie Maguire Amsterdam

The down side of being open.

Two things have worried me in the last week. First worked out OK.
Herrad got a comment on her blog that had a strong critical implication. Suggesting that her illness and in particular it's severity was down to a lack of positive thinking. My interpretation of the comment was that poster was arguing his case too hard and would not have intended such an implication. Herrad decided to allow the comment to be published and the response from her other readers was an outpouring of comments expressing outraged love for her. The grit irritated Herrad and she has been writing since- pearls are forming as we watch. One bad comment was worth dealing with.
More worrying was what happened to Steve and BoRobert. Some idiot took information from their blog "Wheel of Fortuna" and telephoned their doctor and made comments about BoRobert's treatment. The Doc went up the wall and now they are struggling to rebuild the trusting relationship they had built up with BR's medics.
Have you ever heard of such a thing?
Steve has been a great support for me. It is not an easy position we find ourselves in and I think each in his own way is doing a decent job. If he was forced to put the shutters up I would feel even more alone and hopeless.
As for the busy body: I believe in pacifism. Sometimes it is challenging!
Steve's blog: http://spinfortunaswheel.blogspot.com/

How we got here musing 1

Herrad has been posting about the past few years. How we found out something was wrong, how it was diagnosed and how the disease has progressed. My experience of the same period is parallel but different. To start I had fears about MS or some other disease for a few years. I remember before this disease was dominant we were planning to move to Swansea. We have a great friend there who we wanted to be supportive to. The city is on the coast and close to some of the most beautiful countryside in Wales. Other great friends live in easy travel distance of Swansea so this was the place. Only when we last visited Herrad’s leg would not do up hill. Swansea is built on hills so this was a problem. We love to walk and explore a city on foot but after a short while of up hill she would be in trouble. One night of the visit I sat looking out the window watching the lights of the ships moving in the bay and the sweeping beam of the Mumbles lighthouse. I then thought about MS. Her eye problems in Liverpool, the fragile hamstring, the sudden tiredness: it all looked like something more than bad luck.
I decided then that what ever it was we were together. I did not quite understand what a commitment I was making but I knew it was the only choice. I know I was right to make it.

My dog.

Last night, or more correctly this morning it found me out. I woke bathed in sweat and shaking. I was terrified. I had no idea what I was frightened of only that I was panicked. As I lay there it was obvious why I was scared. Herrad is sick. I will lose her one day and I do not know how to live a day with out her. I started crying- when I say started it was instant. In one moment tears filled my eyes and flooded down into my ears.
My dog, Spike, is very sweet on me. He pushed the door open jumped up on the bed and cuddled up to my chest. He got me through the moment. I never really slept again but felt a bit safer with my ferocious Jack Russell to guard me.

Thanks to Herrad's friends

Herrad sent an email and blogged about how she is feeling now. She has had to let go of the "I'm OK" answer when you ask her "How are You?'
This is a relief for me. I have to ask her how she is all the time. Cold, warm, hungry thirsty cant scroll down the computer screen cos her hands are shit, sitting to the left thus straining the right side of her neck. I need to know 'cos it is my job to to sort it out. Unfourtunately my necessary question was getting the answer she was not givving to the casual "How are you?" from friends.
"How do you fucking think I am? I have got bloody MS and hurt all bloody over you arsehole how do I feel? I feel like shit!"
I am a stroppy git myself and had to take a deep breath and be all sweet and bring her round to discussing what I can do to help. Sometimes I would react. She would get upset and we then talked hugged and got going on the right track again. Life is easier now it is public: Herrad feels really shitty- now we can get on with the rest of life.
Herrad's friends have been great. The kind supportive comments from her fellow MS bloggers and her other friends around the world have been a huge lift for us.
We are pushing forward with some new ideas and Herrad is working on making podcasts again.
Your comments and emails have helped us get rolling again. Thanks.

Happy New Year -love to Steve and BR

It has beeen a nice couple of weeks. I have had a cold for ages but it held off till the last few days to become a stinker so we have had a good couple of weeks. We had a lovely time for ourselves and a few nice visitors.
The January freeze ended yesterday and now we have a lovely mild sunny spring like day.
My misrable Xmass greeting is now superceded by a determindly optimistic happy new year to the whole world.

Steve asked about seizures in his comment- http://screamingrichie.blogspot.com/2008/12/scrooge-rules.html Herrad has not suffered anything we have not been able to help with marijhauna. The only other neuro drug she uses is Baclofen and we seem to have kept the worst symptoms under control. She can have spasms when stressed (being moved clumsily or sudden tempature changes) but never as severe as BR seems to be hit by. MS is very personal and no two people exhibit all the same symptoms so I can not say that the weed would help everyone but I do believe it helps so much with Herrad that I doubt if she would have much quality of life without it.
I repeat that the neurologist at the OLVG (Hospital) recomended it as the best drug to use as did Proffesor Polman at the VU (free universtiy hospital).
This is no help to those who live in prohibition areas. It is ironic that law abiding Americans are banned from recieving the best availble treatment.
This carer situation is crap. I feel for anyone forced into decieding for others. Herrad and I have the correct things in place and I know her wants but at some point I will have to help put them into action. Nothing in previouis experience has prepared me for this.
I can only think of plattitudes to say: I aint got no wisdom to share.

MS is a shitty disease...

OK so this is my first post. Why this blog? It is a place where I can express the absolute despair I am feeling as I watch my darling grow sicker and sicker and prepare for her to die. I am desperate because I will out live her. I cant believe in a future without her. I want to scream and rave and smash up the furniture but I dont. I just get on with the daily business of keeping her alive and trying to make her life tolerable. It is getting less good by the month an we both know she will not want to take much more of this shitty disease. I have an email from her, with a letter attached to be printed out. It is her euthanasia letter. It is the first part of the process. I am glad it is legal here (in the Netherlands) we can make rational plans with our trusted doctor but it is still dreadful. I am glad for her that she can set a limit on the pain she suffers. When she dies my pain will continue. I guess we will have next summer after that I dont know.

Well today I cant stop crying and dont know who the hell to talk to so I will address the universe. Well love to you all and stay tuned for more self pity later

Richie