It's me, me, me

I have the pleasure of being the last of The Romaniacs to reveal myself today. The Romaniacs are a fab, supportive group of aspiring authors and we're all members of the Romantic Novelist Association's New Writer's scheme. So please come and check us out if you haven't already, and give me some moral support ;) I'm blogging about dreams and determination...

Bye for now xx PS - Here is the link for The Romaniacs

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

D is for... DETERMINATION

Sperm are determined. Salmon too and how they travel upstream to spawn. And swallows; any time now they will fly in the thousands of miles from South Africa to make a nest and raise a brood in the eaves of our barn simply because it’s where they nested last year. That’s because it’s their natural instincts to do so. They travel to whatever lengths, face whatever challenges, and jump whatever hoops to achieve their goals.

As humans, we’re just as determined in the way we live our lives – sometimes driven by instinct, but more often by our upbringing, or our goals and plans for life. Determination is in my makeup, my instinct for sure. I’ve always been the same - stubborn, determined and driven.

You can’t imagine how it affected me when my body stopped cooperating with my mind, ambition and dreams. It was like the ultimate betrayal. How dare my own body let me down? I’d always treated it pretty well, eaten my vegetables like Nan told me, exercised, looked after myself like I was supposed to do when I was pregnant. Yet still my body betrayed me.

It was never meant to be like this. Learning how to live with Behcets disease has been the biggest challenge of my life. Never a day goes past without my frustrations bubbling up over something or other; cancelling holidays! (Thursday's blog) Despairing at the state of the bathrooms that need cleaning, knowing the beds haven’t been changed for three weeks, not being able to go and weed the garden. I have never played football or had a play fight with my sons. And of course, I had to give up my job to cope with everyday life and the pain.

There are days when I wonder how I ever had time to fit in working. I was so organised, I would prepare the dinner the night before and simply stick it in the slow cooker in the morning. Now I’m at home all day, we’re lucky to have a good square meal on the table. Often it’s an easy ready dinner compromise or takeway. Shocking eh? Again, you can’t know how difficult that is for me because I used to be a fab cook. I enjoyed experimenting and found it easy.

Luckily, as well as having an understanding family, I’ve learnt how to live with my illness. It has meant adapting. Adapting means I survive. And it also means compromising my dreams and what I’d really like to do, understanding my limitations. I’ve learnt the ‘be kind to myself’ strategy. Living with an auto-immune disease and being in chronic pain means if I do exert myself a little, I need to rest afterwards, then I can do a bit more. For example, if I do the beds this morning, I’ll sit and read or write this afternoon, and leave the bathrooms until tomorrow. Instead of hand-crafting birthday and Christmas presents – the things I used to love doing - I not only have to buy them, but I have to plan well in advance as I’m slower than I used to be and usually, I’m working around some flare-up or trying to be organised, just in case of the next one.

Not going out to work means I can lead life at this pace and not push myself too hard. The day is a series of stop, starts and compromises. Work, rest, rest, work. I get the balance wrong at my peril, and the whole family pays for it. And flare-ups are not necessarily self- induced. Sometimes auto-immune diseases just happen. Flare ups have no rhyme or reason. It’s a strange journey. Me and this lodger of mine.

Being as stubborn and determined as I am, I’ve learnt this the hard way, through pain and suffering. Like those salmon I still go upstream every day of my life, often knocking myself up in the process. But I have a hard head and don’t listen to others as I should. This is one of the lessons I still need to learn.

Knowing my limitations will always be part of my life now. The frustrations go with the territory. But this is where I have a problem as I always do things the hard way. Like Winston Churchill, I ‘Never, never, never give up.’ And he won a war, didn’t he? Where there’s a will, there’s a way.

There you have my 'D’ – DETERMINATION

Until another day

Bye for now
xx