I DID IT!

I'm on The Romaniacs blog today, in celebratory mood. 

https://theromaniacgroup.wordpress.com/2015/08/11/life-cycle-of-a-writer-theres-no-such-word-as-cant/

It's taken four years and four re-write but my first novel, 'Living in the Past,' (Formerly known as, 'Mother's Love') is finally FINISHED and was posted off to the RNA NWS yesterday! Hurrah! I'm talking about how tough it has been. But no looking back now. Only forward.

I DID IT! Thank you everyone for all your support and encouragement.

Until another day 

Bye for now

xx

Positive vibes welcome. Please

Tomorrow, Tuesday,7th June,I find out whether I have Endometrial cancer.

I tell you this because earlier this week, I watched a documentary about Joseph Merrick, better known as Elephant Man, and how he lived for his short twenty seven years with the terrible affliction of Proteus Syndrome. Speculation still surrounds his death and whether it was accidental or deliberate on his part. And as I listened to the programme it struck me how his infirmity must have affected him, living with it day in, day out, and I found myself empathising, understanding if he did stage his own death why he might have done so.

Don’t get me wrong, I’ve never encountered anything like the physical difficulties or prejudices Merrick had – in fact, the outsider would never know from first glance anything was wrong with me. But living with Behcets,an auto-immune disease means there’s always some new health hurdle to contend with and I can totally understand how someone who lives with terminal illness, or chronic pain or illness might decide they’ve had enough.

Pain has been my lodger, my cross to bear (or ignore) for the last twenty five years. There's always something. Usually it's arthritis but I also experience colitis, ulcers (mouth and vaginal,) or some other aspect or by-product of the treatment for my condition. I've had septicaemia, avascular necrosis, miscarriages. The latest development is some sort of vascular problem with my hands, feet and head which I'm seeing my Rheumatologist about in a couple of weeks. Six months ago, I thought I’d tackled the biggest obstacle with the jaw replacements and hoped there might be a little respite for a couple of years. However, it seems Mother Nature has other ideas.

I’d ignored ‘women’s problems’ (constant, heavy bleeding and niggling stomach cramps) for months and put it down to the stress of the surgery, perhaps my system lashing out, or maybe being forty four years old I was simply a menopausal old bag! Eventually, I relented to hubby's badgering and went to see the GP. As a result, for the past few weeks I've had all sorts of investigations which have found an enlarged uterus, abnormal blood and smear tests, and in between, you may recall we had to cancel a trip to New York in March because two days before we were due to travel, I ended up in A & E with crippling stomach pains. As I lay in that A & E bed, I turned to my hubby and meant it when I said, ‘If it is cancer, I don’t want to have treatment. I’m weary. I’ve had enough.’

To be fair the hospital has moved quickly and after more delving, a couple of weeks ago I had a biopsy to test for Endometrial cancer, the most likely cause for my symptoms. In my heart, I don’t think it will be and even if it is the ‘C’ word, the prognosis is good if I have a full hysterectomy and chemo/and/or radiotherapy. But do you see what I mean? I thought I’d come through one big, bad lot of surgery; of life being on hold, cancelling holidays and experiencing pain so bad, I literally used to writhe in agony on the sofa. If it's not cancer, months of treatments may lay ahead and if none of them work there could be the same end result - a hysterectomy. And what really peeves me is whatever the outcome, as sure as night follows day, something else will come along. It's the nature of the beast that is 'auto-immune disease.'

Hubby and my boys have years ahead to enjoy their lives. Do they really want to carry this sickly, relentless burden around for the next thirty, maybe forty years? And am I not entitled to decide when I've had enough?

NO. As one of my best friends pointed out, I’m a mother and with that role, there is obligation and responsibility to my children. There isn't just me to think about. I have to carry on doing what I do best - fight - whether this is cancer or just another manifestation of the Behcets.

I’m in a perfectly lucid and rational mood - I promise - so please don’t think this is me being depressed or feeling sorry for myself. I don’t want tea and sympathy, although some positive vibes for Tuesday might help ;)

I suspect only those who live with chronic pain or illness will truly understand what I’m alluding to in the above. Perhaps if you read this and it means something you might leave a comment so that those close to me don't think I've gone completely bonkers, and that I know I'm not the only person who wishes in today's modern world we had the right to choose when and how we might turn the lights out.

We all deserve to be able to say, 'Enough is enough,' don't we?

Until another day

Bye for now
xx

'H' is for ... Happiness

Are you happy?

What makes you truly happy?

It’s a question I ask myself a lot these days. We’re looking forward to Easter and wishing a Happy Easter to everyone. Every year we’re wished a Happy Birthday, Happy Christmas and a Happy New Year. But I’m not entirely sure what happiness is any more. Don’t get me wrong, I’m happy. Some of the time. But living with chronic illness and pain day in day out tends to dull the sparkle from you.

There was a time in my mid-twenties when I was so happy I thought I would burst. Someone I once worked with said I like a breath of fresh air. I wonder if they'd think the same if they could see me now. Being the kind of glass half full type, I try to remain cheery despite spending much of the time being frustrated because my body won't always do what I want it to do. And being a perfectionist doesn’t help. I read an interview with John Cleese a while back. In it he mentioned how being a perfectionist meant he was never completely happy and I understood what he meant by that. When I decided 'H' was for Happiness in the challenge, I asked myself what makes me happy. Not surprisingly, it raised rather a lot of questions;

- Can you ever be truly happy when you live with chronic illness and pain?
- We tend to be happy when we’re in love. But does that mean another person can make you happy, or do you have to do that all by yourself?
- Are we happier when we’re children? And if so, does that mean old folks aren’t happy?
- I look at people worse off than myself and ask what have I got to moan about? I have two wonderful boys, a loving husband, beautiful home, brilliant friends… and much more. Some people are never happy or fulfilled and I don’t intend to turn into one of those.

It’s only human to want to be happy but over the years I’ve learn to accept that on occasions unhappiness is a part of life. What I refuse to do is let it move in forever. Living with chronic illness, it’s unrealistic to expect to be happy every day and here's how I've coped:

- I tell myself pain is there for a reason, like a warning. Nature is very clever when she’s not being a pig. Nature defines we’re not supposed to be happy during physical pain but we can have the strength of endurance and look forward to feeling better. So when I’m in the midst of a flare up, I’m kind to myself and tell myself it won’t last forever. And when I’m feeling better I’ll do such and such.
- I’ve learnt to ‘use’ the good days – along the lines of ‘make hay while the sun shines.’
- Perhaps most significant, I’ve discovered how to embrace my pain and condition – this ‘lodger’ of mine – a kind of making my peace with it. It has taken a long time to reach this point.
- I find happiness in the simple things - listening to the rain, watching the boys bounce on the trampoline, eating Bailey’s ice cream - a bit like those endorphins I mentioned in my ‘E’ is for Exercise Blog, the feel good hormones kick in when we’re working our bodies and endorphins play a big part in feeling good and being happy.
When I went to the Easter service at my son’s school on Thursday, I can’t tell you how happy I felt during and after watching their little beaming faces as they told us the Easter story and singing the Spring Chicken song. It was pure joy.
- After spending time looking inwards, I have found in spite of my health problems there are some things I can do that make me happy. I was devastated when I had to retire aged only 32 but after I left the bank, I tried running a little craft business to fill the gap. Then when my health got the better of that too, I started writing. You have to keep going to find the thing you like (and are able) to do. For me, I found writing is a significant thing besides my family and friends that makes me happy and feel fulfilled.

So if you are struggling to find happiness, perhaps ask yourself sometime; what is the one thing you would really like to do? Often it’s something you have thought about for a long time, perhaps even since you were a child but never thought you could/should do it.

You might find that gives you the fulfilment, joy and happiness you have been looking for.

Happiness, like thoughts, our incentive and creativity are born within, and can only come from somewhere deeply imbedded within each of us. And happiness isn’t a gift we receive from someone else, it’s a present we give ourselves.

I will leave you with this thought; something my Nan was forever telling me when I was a little girl. ‘Laugh, and the world laughs with you; weep, and you weep alone.’ The full version is at the end of the post.

And if all else fails, watch this It can't fail to make you happy!

So until another day
Bye for now
Xx

Solitude
Laugh, and the world laughs with you;
Weep, and you weep alone.
For the sad old earth must borrow it's mirth,
But has trouble enough of its own.
Sing, and the hills will answer;
Sigh, it is lost on the air.
The echoes bound to a joyful sound,
But shrink from voicing care.

Rejoice, and men will seek you;
Grieve, and they turn and go.
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
Be sad, and you lose them all.
There are none to decline your nectared wine,
But alone you must drink life's gall.

Feast, and your halls are crowded;
Fast, and the world goes by.
Succeed and give, and it helps you live,
But no man can help you die.
There is room in the halls of pleasure
For a long and lordly train,
But one by one we must all file on
Through the narrow aisles of pain.


Ella Wheeler Wilcox