A vanilla cure all.

If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard, the world is now full of different brand so powdered custard but back then I can only think of three, Bird’s, Creamola and Mum’s, alright my Mum isn’t a brand, she also wasn’t a very good cook. I used to love School dinners as they were edible all the time, unlike the stuff that appeared on our plates at home. Yet she had one saving grace to the child that was me, cornflour custard.

All custard powders are the same base, cornflour, flavoring and colouring. Except Mums’ it had no colouring and a wonderfully strong vanilla taste. All she did was heat milk, add sugar, vanilla extract and then the slated cornflour. Once cooked through she served it with a handful of Sultanas on top. Not only did we get this glorious pudding after our evening meal on occasions, we also received it as a cure all. Any time we were ill, this bowl of heaven appeared with the sultanas added as a smiley face, it always worked as well as we always got better.

To this day vanilla is still a smell that means instant comfort and home. Smells link us so quickly to places and to people, last night I made a fruity chicken curry and I was back at my Auntie Lorna’s, she was the person how introduced me to the wonders of Indian food. With at little thought I am sure I could find more and more of them but cornflour custard is the one I still make when I feel unwell with something other than my MS and although my nose doesn’t stop running or my cold doesn’t go away, I still feel better.

Optimist of Pessimist?

I realised today while chatting with a friend that we all make assumptions when it comes to our own and others health. She know that I have MS and had assumed that I have relapse remitting just as she does, I don’t I have relapse progressive, for those who don’t know there are several variations with in the Multiple Sclerosis family. The most common is relapse remitting which kind of does what it says on the tin, bad spells called relapses followed by spells were you either recover totally or most of the way back to normal. That’s were mine is different I don’t get better, some of the way but always worse than before the relapse.

‘RRMS’ has several medications available and is the easiest to control but still not a nice thing to have. ‘RPMS’ has a more limited range of treatment and I have already had the most aggressive one possible, maitotoxin which is a form of chemotherapy. It’s kind of strange watching people gown up with thick gloves, aprons, glasses and so on to prepare what they described as a highly caustic blue liquid, then attaching a tube to you and let the stuff flow slowly into you. It made a huge change, it brought me back to a much improved state and slowed things down for a long time. It can badly damage your heat though so they will only give it once.

When my friend said that she thought I had the milder form I realised that we always do that. Assume someone else has the best possible outcome, but when it comes to ourselves we assume it is the worst possible. I know I have done this several times in my life, in my head I have had several terminal conditions but if someone I know is really ill in my head they will get better, they don’t always. Which prompts my question, are we all pessimists about ourselves and optimist about other?


I actually had a visitor today a real human being walked through my front door. She didn’t bring any gift, even though she is the first person to visit here in 2012, she brought 2 hours of questions and checks. I gave in trying and hoping that the increased pain levels I have had for the last few weeks would go away or lessen, so last week I made the phone call and brought in not the ‘A Team’ but the ‘Rehab Team’. The used to call them the ‘District Support Team’, for what ever reason they thought a change of name was needed, can’t help thinking that it meant to make them seem more modern, as it seems to be only the name that has changed, the lists of questions clearly hadn’t.

2 hours of questions, which if they actually had joined up system, most of the questions she asked, they already have the answers to. She went round the flat checking that everything was suitable and then discussed what I had called her here for. So now I wait again while she goes back and discusses the sheet of answers with the rest of the team. I really don’t want to increase the morphine yet, I have a fog filled brain anyway without an increased artificial one on top. What I really want is a top up drug so that when there is breakthrough pain I can hit it back rather than be doped all the time.

For now though I just have to deal with it, I have to say her suggestion of a slightly larger Gin in the evening until we get on top of it, sounds OK with me. I know that having my meds totally checked and assessed is long over due. I have managed them for long enough and although I hate to say it, I need their help. For now though I am heading for my bed, the whole thing has left me exhausted:)

An MS balance?

So let me think, not the lead to the most exciting blog you might think, well the only way to find out is to read on. I went on my memory trail earlier today, it’s something I do from time to time, it’s a great exercise for me and I expect for anyone else who has a slowly fading memory. I have a fear that the day will come when I won’t be able to find those memories, that they will be lost to me for ever. That is part of the reason I write so much and pour out details of my life that many would rather forget about.

There are loads of things in my home that to the casual observer would appear just to be a large collection of ornaments, the type of things you would find in any home. Many I know think my home is cluttered and if I am being fare it might be, but my clutter has a purpose. I know where everything is and yes I do mean everything, with my eyes shut I can find any single one of them. For a long time I didn’t even realise what I was doing, I told myself and anyone else that I bought so many things to display in my home because I liked them. Not totally a lie. I do love crystal, Thomas Webb, Georgian pattern if anyone is interested and yes I have getting close to a complete glass collection, for now it has stopped growing but I hope for not too long. I digress. The trail has two purposes one to check on locations the other is quite different, some things are here not to just look pretty but they have stories behind them and memories I have installed in them.

When I fist realised that I was going at some stage be housebound I started arranging things so that I will always hopefully be able to use to pull those memories back to the surface. I get extremely agitated when they are moved by cleaning but when I can’t remember all that goes with them I sit and looking at them or holding them until I do remember. I know that people with Parkinson’s are encouraged to put together a memory book or box, I have considered it but it doesn’t fit with the way I am. If I put something in a box, then that box has to be out of site and unfortunately ‘out of sight out of mind’ is becoming more than just a saying.

Multiple Sclerosis slowly causes what they call lesions on the brain, understandably as the brain is such a delicate thing, these lesions cause damage. That damage is clearly different for each person as there are no set areas where the lesions grow. For me clearly I have problems with memory, I know I have damaged to my left frontal lobe and part of this is an impairment to my emotions. This is to me one of the embarrassing things MS has done to me, I cry, I cry at all the wrong times. Anything that causes a sharp change in my mood or I find embarrassing or difficult to talk about I cry. Now dealing with a builder who has botched something is not the right time to cry but I would and did. I can’t imagine what will set me off in the future but I have visions of someone just saying hallo and I cry.

This morning when I was trailing round my living room I started to cry, I was simply holding a little silver cat and remembering my Siamese cat, who by the way died nearly 20 years ago, I cried. I now have a vision of me in the future sitting in permanent tear because everything I see causes some sort of emotion. They say god takes away with one hand and gives with the other, so have I found the reason why I am loosing my sight.

Changing Life

I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and fun to be had. I don’t remember when that ended but I do know that is gone. I’m frequently being told not to hold on to the past as it is gone and that I should use my energy planning for the future. I know this sounds bad but I can only answer that by saying ‘what future’. Yes I have plans of getting a new job and things I would like to do my home once I have one, but that doesn’t fill me with the warmth of my memories.

There are for me just as there are for everyone, dark areas which some would rather not remember, yet now I also embrace them. When you are forced to change your world, constricted with no way of continuing what you had, you see everything in a different way. I could moan about not being able to dance, walk or run any longer, make myself feel bad about MS or I can let myself truly remember, remember all the good feelings and find a freedom that reality had taken away from me. I haven’t stopped living I just changed the way I do it. Physicality is so much part of our world that to lose it seems unthinkable.

I challenge you to spend just one weekend at home, were you can speak to on one other than your partner, you can do nothing but sit in front of your PC in the day and TV in the evenings. No you can’t do any housework, a blessing you may think, but think that into the future and the dust that just has to lie there. You can’t read a book as your eyes won’t let you, nor can you knit, sew or any other craft type project. Theses are all gone, as is anything you need to do standing for more than a few minutes. You will then get a glimpse of the easy side of having MS. Then when you wake on Monday morning, I bet you will be happy to go to work, happy to have another person to talk to, happy to be outside. The thing is in my world I don’t wake on Monday morning to anything different than I do any other day. I wake to a limited future with a rich past.

There is still a lot left for me to do and much I want to do, but I have to accept that mountaineering just isn’t going to happen. I thought I would never survive living this way, yet I have and I think the reason why I manage is quite simple. I balance what I have with the richness of what was.

I’m not anything or anyone special. I’m not different or stronger than you, the only difference between us is I have Multiple Sclerosis, that’s all.