A Leap of faith. Namaste.

ali 090This serves as a reminder as I take a leap of faith.

Some decisions require lots of thought others very little indeed. When I first got sick, some 6 years ago all I wanted to do was get better and have the doctors make whatever it was go away. Chronic illness cares little for selfish desires of either the patient or the doctor.

Chronic illness can be insidious but whereas there can be some removal or cutting out of some disease and illness this is not usually the case with auto-immune diseases, you could cut away and chop and it would often make very little difference and they are still poorly understood in some respects despite huge advances in treatment and therapy. I hope that one day breakthrough treatments with stem cell therapy might offer hope to the millions of sufferers worldwide of diseases like RA, Diabetes, Lupus, Sjogrens, Crohns, Ulcerative colitis, Psoriasis…etc etc.

We tried most drugs and it took many many years, there is no panacea, there is no quick fix, try this one for 6 months, mix it with that one for another six months.. and then you start running our of options, or the options become less and less attractive. there are folk out there who rattle on a daily basis, 8 of this, a short of that, this to counter this effect etc. Many of the drugs used in auto-immune disease therapy are cytotoxic which is effectively chemotherapy and people are taking these drugs for years and years. The side effects can be awful, the usual rashes and allergies, hair loss, nausea, diarrhoea, sun sensitivity, higher risk and probability of cancer X cancer Y and cancer Z. memory loss, palpitations, neural damage, multiple sclerosis, and fatal infections of relatively harmless bacterial and fungal infections. This is how it is written there is no sugar coating.

The chances or statistics for these rare events mean that most of us press on and try to give ourselves a health break, a chance to dampen the disease down a hope that it will completely disappear, but sometimes we do become the statistic. The infections I have had in my sphenoid sinus and other sinuses has likely proliferated as a result of my very weakened immune system from the biologic therapies that  have used even though I stopped all medications last July when I realised there was a real issue.

Three weeks on from high-risk surgery and infection is back and not paying any attention to the limited antibiotics I can use (drug allergies). Funny though it has simplified what was going to be a difficult decision. Today I met with the rheumatologist with initially hoping to use another biologic. The latest infection mean that this is not an option and have made it easy for both the rheumatologist and I to see that the only way forward at the moment is a relatively drug-free way, whatever the costs and consequences of that decision may be. I am fortunate that I am at a point in my life where I can face this option with courage instead of fear, and it might change again in the future. But for now, infection is not my friend and the risks associated with drug treatment outweigh any possible benefit to my rheumatoid arthritis. So we are bare-back riding into the night. it is a leap of faith. i have put the photo at the top to remind me of the consequences of infection.

 

 

 

Fosbury flops and grieving for my right hand.

So we put  a team in for the 10th northland Relay for life. Somehow I managed to be in charge. Not quite what I had planned in the recovery period from my surgery as it actually required a reasonable amount of organisation and commitment. We had 35 students that participated and we camped. This in itself required a car fully packed with gazebo and an assortment of tents chairs and sleeping equipment.

I decided to use our old lichfield tent, the one we first used as a couple more than 22 years ago, a small canvas tent. It went up fairly easily and I had taken a small stretcher that when I unpacked it looked at least 6 inches narrower than our old ones.

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Sleep was a little out of the question, with the lights the music and the constant banter of the 20 students that camped with us for the night there was the unseasonably damp and slightly chill overtones of the early morning hours. My arthritis was playing up good style so I did retire for an hour or two and found it virtually impossible to find a comfortable spot.

Once cocooned in my duvet I had to contemplate how to get up again, should there be an emergency, a fire or some such event caused by the nightlights in the paper bags… no amount of effort was sufficient to enable me to get up with any grace or speed. It finally came to me that the only way I was getting up again without overturning the damn stretcher or ripping through my trusty old canvas tent was to attempt a version of the fosbury flop that we had done at school in my youth, which would of course at least leave me in a heap on the floor.

There is no grace in chronic health and ageing. Even at 49. I got as far as the floor and then spent the next five minutes working our how I was going to get upright with absolutely nothing to grab hold of.

It was a successful event despite the lack of sleep and the 48 hours of trying to recover. It was worthwhile and despite the challenges faced.

The next challenge was less than a day away when i began to be aware that my middle finger was beginning to rotate slightly and move away from  its normal position, a brief trip to the GP confirmed my worst suspicion and raised the issue of ulnar drift. I wanted to cry and grieve for my poor middle finger but daren’t as it might make a mess of my nose. So I searched through all my bags of splints until I found the relevant ones to slow down ulnar drift.

I think it will take me a while to adjust if I do indeed need to grieve for my hand.

Preparing for what?

 

I think that at the moment my reflections are in a sense and evaluation of how I got to where I am now and in a sense planning. Planning for what? The bus is to represent the journey and I suspect it has something to do with the fact that I turn 50 this year. So planning for what? Well planning to finally be a grown up…surely you  must be grown up by the time you are 50? I just don’t know how I got to be here so fast.

It is as if I am only just coming of age, only just becoming a legitimate adult only just passing for good enough or accepting that I am worthy of the title of fully qualified adult human being, almost like somehow up until now I have been some kind of imposter, faking it until you make it and yet somewhere between 40 and 50 it happened without me knowing it or planning it or preparing for it.

I can now say that I don’t need your acceptance to justify my life, my actions my beliefs my intentions. Your judgement is exactly what it is – your judgement. I am worthy -I am who I am. It doesn’t matter what you make of me.

I used to look at other people and wonder how they did it so well, they were already grown up, already experts at being themselves, they already had that air that indicated they knew what they were doing and they were doing a darned good job of it, whereas I was always a little bit scruffy and unkempt, giving off the air that maybe I didn’t really have the foggiest. I just wasn’t polished enough. I was somehow always the reserve waiting on the sidelines to be good enough to play. Always striving to achieve success at something to validate my worth and existence in the eyes of others having to prove my capabilities. Perhaps it is because I got asked to mime in choir at primary school, perhaps it’s because I got asked to cut up oranges for the netball team instead of play, perhaps it’s because my job was filling up the tampax shelves on a Saturday and only getting to be on the beauty counter when someone was off sick, but even then being assured that I really wasn’t the ideal face of Lancome.

Somewhere though it happened, perhaps not in the way that I had envisaged and often through circumstances that weren’t part of any grand plan and just a little bit accidentally. I grew up and now I am planning to enjoy what I have become. I think I am planning to make 2016 the year of being 50 and the year of being me, the real me, the person that I am.

You don’t know what you don’t know

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This picture was taken at Senior prize giving, one of the few occasions where we still wear academic dress. The hood isn’t actually in my university colours as I did my degree and Post-Grad in England. Staff in NZ school are very particular about their hoods. They have to have the right one and this brings me to exactly what I am talking about- you don’t know what you don’t know. This was the very first and most important life lesson I learned on my arrival here.

I graduated from Leicester University in 1988, for some reason the ceremony wasn’t in the summer, and it was all a bit rushed and as a consequence I never even got an official photograph of me in my official gown hood and hat. They were hired not purchased and it never really occurred to me that I would ever need or desire to own my own. You don’t know what you don’t know. The photograph thing appears to be a key feature of my life, when my husband and I married 22 years ago in 1994 we didn’t get official photos then either we didn’t have enough money and I didn’t think I would ever want or need them. Again you don’t know what you don’t know. I seem to spend a lot of my time not knowing things that I should know.

I earned my Post graduate certificate in Education fromManchester Polytechnic- school of education in 1993, for some reason the graduation ceremony was in the October and I had already embarked on my teaching career and my principal wouldn’t allow me to take the day off to attend my graduation. I have no idea whatsoever what the colour or style of the hood is or was, and once again have no official recollection or photograph of the said event.

My next foray into education was at St Martins College Lancaster where I studied for a graduate certificate in counselling, I don’t even remember if there was a graduation let alone if there were caps and gowns and hoods, I had just discovered I was expecting my daughters so perhaps this accounts for the lack of any  memory.

And this brings me to my new adventure this week- I am just embarking on a new study with Massey university where I will work towards a Post Graduate Diploma in e Learning. I have had to try to explain what I hope to achieve in my studies and quite frankly I have no idea other than it seemed a superb opportunity not to be missed. I don’t know what I don’t know so I don’t reeally know what I hope or will achieve in the process but one thing I do know- if I get to graduate this time- I shall be wearing the full regalia and having my photograph taken properly and officially this time.

Knickerbocker glory’s in tiger country.

knickerbocker glory

So you might not know what a knickerbocker glory is, I never had one but always coveted one…in every cafe we ever went in as a child I watched enviously as other children were given these beautiful treats by doting grandparents. I wasn’t the only deprived child, my husband also coveted a knickerbocker glory and never got one. This current generation with mcflurries and kiwiyo will never understand our loss, I suspect there must be something they covet…maybe it is cabbage or tapioca..or semolina…

Anyway I had to have surgery this week and it was classed as high risk and I am classed as high risk. I don’t have cancer, I have chronic diseases which is exactly like it sounds..chronic kind of slow and lingering. I have Rheumatoid Arthritis, Ulcerative colitis and a bit of Sjogren’s, I also bleed in surgery for no known reason and have allergies to a fair few antibiotics including penicillin and also a latex allergy, add in steroid dependency immunosuppressant drugs and I am quickly becoming the last person you want in your operating theatre we can now add in difficult intubation on more than one occasion and to be fair you wouldn’t touch me with a barge pole if you could help it.

It was my sixteenth surgery. That is my sixteenth surgery done with anaesthetic and cutting in Theatre, not including those other procedures like the colonoscopies, endoscopies, flexi-sigmoidoscopies, IVF procedures, MRI’s CT’s and minor intrusions.

There will be many of you out there that have been through more and many that have been through less but all I can tell you is that despite everything, which included losing 3 litres of blood in 2 minutes in my last surgery and nearly not surviving this one had terrified me the most. The sixteenth.

The sixteenth surgery was in tiger country. Not in my belly or my abdomen or some big roomy cavern but up my nose and into my head to the deep space beneath the brain that is called the sphenoid sinus. Tiger country because the membranes are all that stands between the scalpel and the brain, Tiger country because the membranes are all that stands between the scalpel and those major blood vessels and arteries. Tiger country because that is how Dr Shetty described it and that is how I found my peace on the afternoon of my surgery, he was going to be slow and careful and exercise stealth to remove the disease and infection from the tiger country.

Tyger Tyger, burning bright,

In the forests of the night;

William Blake.
The team were meticulous in their preparation, no sign of latex, blood products on standby and two full anesthetists as well as an anaesthetic technician and I was swallowed in the most wonderful blanket of fentanyl to wander through the forests in the thick of night to hide from the shadows of the tigers burning bright. It was so warm and I was in a cafe and I was going to be getting my first ever knickerbocker glory, it had been ordered and it was taking such a long time to come. My mouth watered at the thought of the coolness of the ice cream and the lusciousness of the fruit. It was so hot in the cafe and I needed air, so I sat on the step in the doorway to feel the breeze across my face, and there it was on its way out to me when they called me back. They were calling my name rousing me from my sleep and it was so warm and I wanted to wait and get my ice cream- my knickerbocker glory, but the calling wouldn’t let me stay and I had to waken.
It was over. Job done. Temperature had dropped to 35.8 so I was laden with heated blankets and on oxygen, despite their best efforts I had been a “challenging” intubation and my throat was raw and sore, and my right eye was watering from the sticky gel they had used to protect my eyes from being shut so tightly. I looked at the clock and checked the time. it was 15.45 and I was alive. 15.45 and I had survived and Dr Shetty had removed the disease and brought me safely back from the Tiger Country.
I cannot thank them enough.
tyger__tyger__burning_bright_by_nienor-d2ju394-800x0-c-default

November 1st…the All blacks won back to back…in the rugby world cup

Well England got knocked out right at the beginning. It is important to notice what goes on in the world, the events be they political, social or even entertainment- they are like the beacons on our road map of life. They guide us back to our memories. I was born in the year that England last won the world cup-football that is…not rugby and for some reason that always seems to give me some sense of connection, it was a year of something instead of a year of nothing, a year remembered for something positive and not something of despair. So there I am like a little tiny star in the sky anchored by this one single event. My daughters were born on a day of history. They were born on the day that NATO began its aerial bombing campaign on Yugoslavia. Strange that- in my youth Yugoslavia had become a holiday destination, but that day marked a change that would last for many years and Yugoslavia ceased to exist in our minds as a tourist resort. And well that is how quickly and suddenly things can change. Our lives are so fragile, the webs we weave so intricate and complex and in one tiny breath we live and die, laugh and cry, hope and regret. Today we win. The All blacks… we win back to back in the rugby world cup. For someone somewhere it will serve as a positive beacon to guide them on their way and to guide them back to their connections at some future point in time.

In the beginning

I haven’t done this before…so this is in the beginning… I have called it  spoonful of sugar because I think I am an optimist and although there are quite a few ups and downs in my life…I try to take it as it is and keep going. I think Spoonful of sugar is a positive thing and I try to find positive things to help me keep up and running. I might make a few typos some days are worse than others but that is how it rolls.

Spring Rainbow on Mount Tiger
Spring Rainbow on Mount Tiger

I think I use my surroundings and the beauty in the environment to keep things in balance. Homeostasis as one of my students would say. I want to do this every day in November. I did Nanowrimo for a few years on the trot and did finish each time… a whopping 50,000 words in one month…but this is a different part of my life and a different story… so I am trying something different.