Tuesday, 5 April 2011


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


Julie P said...

Very inspiring post. We do what we can do despite our limitations and what life throws at us. It takes a lot of courage and, as you say, determination to carry on regardless.


Julie xx

Siv Maria said...

Well said and well done you!

Westerwitch/Headmistress said...

Total empathy and one thing that has struck me over and over again is that when I do feel well and am in a remission I know a joy that people who are always well will never feel.

Never give up and never give in . . . the alternative is to end up an invalid and I can't ever see you being that.

Withy Brook said...

One of my weaknesses is that I do tend to give up - but I suppose it was determination that got me through gardening and my very full life as one hip gave up and then the other.
I wish I could be as determined as you!

KatieO said...

Great post - and I love that CHurchill quote. I'm your newest follower ;-)

Debs Carr said...

I love that quote and your determination to succeed with your, as I'm sure you will.

Tara Tyler said...

you are awesome.
you are dealing with your life and making it better.
you are a great example!
I'm glad I read this.
Happy D Day!

Bish Denham said...

As long as we are breathing we are alive. As long as we are alive then living is what we must do. I know what it is to live with an illness (I have Crohn's disease) but it hasn't stopped me, even though I'm not or eat chocolate.

I'm determined.

Elizabeth Mueller said...

*HUGS* I agree, your post is very inspiring. I know life is tough, and I love your determination to make the best of it. Thanks for sharing with us!

♥.•*¨ Elizabeth ¨*•.♥

Margo Kelly said...

GREAT post! thank you for the inspiration. :)

Melissa Marsh said...

I so admire you for your determination. It can't be easy day after day, but I truly believe that when you have the right attitude (as you do!) then life can be good.

Hilary Melton-Butcher said...

You are certainly determined .. and determined to make a difference to many in life .. my thoughts are with you - Never giving up .. those are the words ...

Look after yourself .. Hilary

India Drummond said...

I really understand what you're saying here. I too have a long-term disability. I don't talk about it on my blog, but I'm not hiding it either...I just find I like to focus on other things. This thing has hijacked enough of my life already.

Very inspirational!

India Drummond

Bev Hankins said...

So sorry for what you have to go through...but very inspired by your attitude and determination! Wishing you all the best!

Elle Strauss said...

It's so easy to take much of life's pleasures for granted. Thanks for sharing your journey.

Flowerpot said...

Well done you - and you are so right, we need to learn to accept what we can do in any given day and push according to that. Or as Churchill also said, "keep buggering on," which is what i do right now. Good for you and take care xx

Rosemary Gemmell said...

You're certainly a great example of what it means to keep going. Sometimes, stubbornness and determination is eaxctly what is needed! All the best with everything you hope to achieve, one step at a time.

Keena said...

I understand you completely. I have Chronic Fatigue Syndrome, Fibromyalgia, and several other health issues. Your day sounds a lot like mine; work, rest, rest, work. I am glad that you have a loving family that supportive and kind. It is truely a blessing. It would be hard for me if i didn't have the support of my husband. Take care of your self and come see me @