Climbing out of the hole.

Being positive is it actually a strategy- or a skill or is it just one of those platitudes….fake it till you make it. It does actually work, so don’t knock it-the more you practice the easier it becomes and the more skilled you become at changing what you feel experience and see. Reframing- the more you actually do just that, change your perspective, see it differently..the more you are able to see the positives..does that make it a life-hack then?

Does that mean you have to be forever shackled to smiling your way through with an irreverent “fine” and a disingenuous smile.

There are odd days though, and just occasional moments when there is no ability to fake it until you make it. Days where for some reason it was just all too much and you found yourself falling into the biggest blackest hole and knowing that the best course of action was not to try to see it as a bright and airy space with hidden silver linings but to accept the dank and dismal despair and let it wash over you like an incoming tide and just own it. Allow its waves to lap quietly at the edge of your soul and know that the darkness comes before the light and whatever pain washes over you is there to be experienced and cherished as much as all the other things. johan_tobias_sergel_-_plunging_into_despair_-_wga21160

Johan Tobias Sergel [Public domain], via Wikimedia Commons

Plunging into Despair.

What Folly is this?

What is a folly?

a costly ornamental building with no practical purpose, especially a tower or mock-Gothic ruin built in a large garden or park.

Well we used to have them in the UK, Dallam tower was a folly just behind the school I first taught at. It was my understanding that it was a Victorian concept, it wasn’t so much a fake or mock up but a tribute to something that was a much larger creation or edifice

Our folly is for the great Hundertwasser project. Whangarei is great fan of Hundertwasser and is set to create a beautiful piece of architecture based on designs made in the Hundertwasser style. It divided a community.Many thought the idea was ludicrous and the building would look ridiculous. I quite liked the idea, a bit of higgledy-piggledy add a splash of colour, who can possibly object to that?

So is it really a folly? It is ornamental and serves no other purpose than to be aesthetically pleasing…but it that the case? It should be a tourist draw-card and make us all feel a little bit better about our town and our lives. Hayley has been working in the Fudge Farm, a delightful little shop at the Town Basin, it serves simply the best ice-cream in town and as we made our first homage to the Folly, we stopped for a lemoncurd small cone and she said it had been “busy as” all weekend. The car park and occupied tables back this theory up to. So perhaps it isn’t a folly after all. Perhaps it is a Wislly instead, something ornamental that has a wise purpose. Love to all. XXXX

A Leap of faith. Namaste.

This 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.

alison 006

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.

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.