Wedding Photos- March 19th 2011

Dysautonomia - the diagnosis!

Hi. It has been ages since I blogged but life has been difficult. The wedding was perfect - as is my wonderful husband. I have left behind Bethany Clague and am now Bethany de Legh-Runciman. I also seem to have left behind ultrawalking and ultrarunning. I have dysautonomia - an imbalance in my autonomic nervous system. I have 20 different symptoms from head to toe mimiking 11 different misunderstood diseases. Chronic fatigue, IBS, orthostatic hypotension, menopausal-type symptoms, shaking seizure-type episodes, pins and needles, restless legs.....on it goes. There is no real treatment, no cure but one day it may go away. I have had episodes of it for 16 years - this episode was brought on by the flu I had at Xmas. I am too unwell to run. At times all I can do is sit watching TV. I find it hard to read at times - trying to use my computer is not easy. However the "well hours" are getting better. But the "bad hours" are scary, unpredictable and there is not much help. Ernie, my Mum and my GP have been very supportive and understanding. Medical doctors have been useless as the tests have had have been normal as nerves cause the symptoms. It is a physical not psychiatric illness and is not caused by craziness but will make you crazy. This episode could last 2-4 years - I am adapting to a more sedentary life. Lots of people thought I was stressed out by the wedding - how wrong they were and I knew it. To be told that I should not marry Ernie as it was subconsciously making me ill was not easy to take - it was hurtful and so wrong. Ernie is my life. Without him i would not be here - this is a horrible, unpredictable and debilitating illness. Does anyone else have this illness? I feel very isolated by it. I have been told i am a "health and safety risk". controlled fainting episodes blight my life and are embarrassing. Any support from anyone would be welcome. I do not know when my next blog will be - I want to live a normal life. I want to feel well all the time. i want to run again. Bye, Bethany.

Wedding Excitement!

Hi. Well in a few days I will be married to the man I love deeply - Ernie.
Hopefully the past weeks of illness will disappate as i walk down the aisle with him.
We have been through so much with my physical health deteriorating.
He has been a rock and the only person who understands and sees this illness.
People are stressing me when they say I am stressed about the wedding.
At times I am confused which is unpleasant and I cannot remember things.
The seizures have gone but when my blood pressure drops, say after a meal, I have to lie down on the floor with my legs elavated for 2-5 mins.
I cancelled my hen night but enjoyed tea and cakes with some close relatives last sunday pm.
My GP was supposed to phone me last night with the blood test results from Tuesday.
This would have told her if I have pernicious anaemia and if so I would be having a vitamin B12 injection today. However I still do not know what is wrong with me. All I know is:
I am struggling to make red blood cells so am on folic acid as that was low. Why?
I have abnormal immunoglobulin results which may point to an underlying auto-immune disease. I have these blood tests repeated in 4 mths time. What does it mean?
My globulin level is going up instead of down after the flu had. Why?
I am really going to enjoy the next few days.
Bye, Bethany.

Struggling but happy!

Hi. The wedding is nearly here!
Last preparations now.
I am not too well so it is back to the GP yet again!
My psychiatrist has told me my symptoms are physical and not mental.
When you are a psychiatric patient A+E doctors and medical doctors are very quick to say it is in your head.
This is not in my head - this is real.
My goal now is the wedding.
I love Ernie so much and the big day will be the best day of my life.
Ernie is my soulmate and saint and I feel honoured to be a big part of his life.
Running and walking - I am having a break from and will not be doing JOGLE 2011.

Bye, Bethany.

Feeling sick of feeling unwell!!

Hi. Well it all comes down to a wee sample tomorrow.
UTI or no UTI?
That is urinary tract infection.
I do not feel well and have felt ill for weeks now.
There have been a few good days where I have got out and run.
But most of the time I feel unwell.
Could it now be my kidneys to blame?
A scan may show if but I am beginning to realise that my wedding day may be difficult.
I want so much to enjoy this big day and marry the man of my dreams.
But I am scared I will be bloated, tired and struggle.
Please God make me feel well again.
Let my wedding day be a day for me to remember with tears of joy, not sickness.
Amen!
Bethany.

Positive thinking!!

Hi. Well life is beginning to get easier.
The sinusitis is still a problem and makes me tired and headachey.
I have good days and bads days.
However the good days are getting more.
I do get tired easily.
I have started walking.
JOGLE is 10 weeks away. I want another go at it.
I have the experience of running part of it last year.
I have no idea how far I will get this year as I have done little training.
However if I can heal my injuries and get no more I will be okay.
Last year half of us had injuries before we started JOGLE.
I need to get back to normal - training and enjoying life.
The wedding is 4 weeks away and plans are going well.
Ernie is my rock and my healer.
I cannot wait to become his wife.

Bethany.

Almost well at last!!

Hi. Well, I am finally getting better.
The flu went after 6 weeks.
The sinusitis is being controlled by a nasal spray and the warmer weather reduces the inflammation. I wear sunglasses in bright light as my eyes are still sensitive.
My stomach is less bloated thanks to a new tablet.
I have started bbotcamp classes, do the powerplate twice a week in a gym and have started running again. Yesterday I ran a marathon round the south of the island. It took me 5hrs 36mins in heavy rain and strong winds. I got soaked.
Ernie has been helping me to get better.
We get married in a few weeks time.
Alot of the wedding service has been planned and we have almost matching wedding rings.
My dress look beautiful and I will have my hair done before the ceremony.
We could have 180 people in the chuch, 60 after for a buffet lunch and 120 for an evening ceilidh.
I cannot wait.
We will be poor after getting married as will lose half of my benefits.
I am not looking forward to this massive reduction in my wages and it will be tight.
I am optimistic about running JOGLE - there is 11 weeks to train.

I am taking one day at a time.
I have good days and bad days.

Bye, Bethany.