Counting my Blessings

I left a comment on a blog recently, I wrote it without thinking about how it might be read by others.   It wasn't anything unkind or critical, just that I have not been to see a GP or any other kind of doctor for over 18 years, nor have my son or husband, my daughter was hospitalised with pneumonia in late 2015 but has not been to a doctor again since.

We forget that our ordinary lives might be extraordinary to others, particularly when our experiences do not mirror the norm.  It did not seem unusual to me as I wrote that comment, but when I actually gave it some thought I realised it is.

Our lack of doctor visits does not mean we haven't been ill just not ill enough to warrant a visit. I will admit I have a distrust of doctors so am unlikely to be reaching for my phone to book an appointment and more likely to be doing some research.

In my twenties I was diagnosed, after a barrage of tests which went on for a number of years, with Crohn's disease.  If you have not heard of this it is a chronic condition effecting the digestinal tract my symptoms were in the large intestine.  It floored me for a couple of years restricting my ability to do much physical activity.  Being so young I was frustrated by an illness that was preventing me from doing the activities I loved which required a level of energy that I often struggled to achieve.  I couldn't bear the thought of that being my life, for, well, the rest of my life.

This was in the days before the internet and google doctor.  I had to accept my fate and just get on with it and I largely did until I had a seemly new set of symptoms which put me back in the GP waiting room.  This time it wasn't Crohn's it was the medication I was taking to manage it, they were slowly destroying my liver.  To say I was devastated was an understatement.  More tablets to support my liver?  That is the road I could have gone down but I didn't.  I stopped with that GPs support.  I perhaps should say that at this stage of my life I was moving around a lot working contracts that lasted about 9-12 months, I moved to new GP practices too.  In hindsight this was beneficial as I got lots of different opinions.  The GP that supported me to stop had not been the one to put me on the medication, she was stopping, in the first place.

She also sowed a seed, there were alternatives.  I didn't venture down that road for a few more years.  I stumbled on in the way you do when you are young, largely ignoring and accepting the symptoms I had.  They were not as bad as for some, I functioned in a job that required high energy levels and had a discomfort every time I ate that I had gotten used to.  I questioned this discomfort with a specialist, could my symptoms be related to what I ate.  The answer was not what I expected, Crohn's is nothing to do with what you eat, this was 1996 that may not be what you would be told now.

Nowadays I am symptom free and have been for nearly 20 years.  I restricted my diet for a number of years to manage this until I realised that was a different kind of managing things.  I did a mountain of research and changed my diet again, restricting my intake of a few foods (wheat and refined sugar were two of them) to see if I could reset things.  Thankfully it worked, with the exception of coffee which I absolutely cannot touch and tea which doesn't make me feel great, I can eat anything now.

I am grateful each and every day that my health is good, that I don't need to visit the doctor from one year to the next.  An unexpected consequence, is that by taking responsibility rather than handing that over to someone else, I feel far more in tune with my body.   I am not for one minute suggesting that everyone can and should do this, it has been a slow considered process over a number of years and I am so grateful it has worked for me and had a really positive outcome.

The last time I set foot in my doctors surgery I was there to see the nurse for a routine blood test as part of my continuing management of Crohn's.  I caught flu as a result of that visit.  I went in healthy.  I have never been back.  I have reach age milestones and I get calls inviting me for appointments which I turn down, they are not compulsory and I was not given a reason for attending other than the surgery gets paid for each patient they test.

And no other illness since, I have yet to have Covid.  That could be down to a number of things.  We eat healthily and in season, a lot of our food is organic.  I don't have any refined sugar in my diet.  Or house is relatively chemical free we don't use any products with artificial scents, make most of our cleaning products.  We do lots of activities that are keep us active.  I take rest when I need it.  I sleep well, most of the time, the odd blip here and there is not the norm.  I reach for herbs when I feel something is 'not right' researching when I don't have the answer to hand.  

I have worked really hard on my mental health processing many of the things that have effected me over the years, slowly making sense of them and moving to a place of acceptance from one of resistance and denial.  The connection between physical and mental health and the effect the latter can have on the former is something I am reading and hearing about more often but it is far from mainstream yet.

Is it all of these things, some of these or none of these?  Who knows?  What I do know is that I have worked really hard to be blessed with the good health and I plan to keep it that way for as long as I can.

Five

Five times you have been round the sun. Sometimes it feels like it has passed in the blink of an eye, sometimes I take the time to pause and savour those special moments with you.  When I read back the words I wrote this time last year all those words still wring true.

You love to sing and really enjoy the singing group we go to every week, the first activity we have joined especially for you.

I love to spend time in the kitchen with you as we cook together and in the garden as we weed and plant.

You still love to be by my side but you are venturing out more and more, slowly and surely.  You make 'friends' everywhere we go, talking confidently to other children and then tell me what they have said when we leave.

I love to watch you engaging with other children taking those tentative steps to introduce yourself with no help from me, it is not something I or your older brother did.  You love company in what ever form that comes spending time with people feeds your soul, I need to remember this and ensure you get enough time immersed in company.  Your brother and I need time alone to feed our souls.  You have made friends that are important to you, children you want to spend time with each and every week.

You have always asked lots of questions but recently they have changed.  You want to know more about this world we live, how it works, what things are for, why we do things the way we do and what things say.  Letters and words are of great interest, the lines and squiggles in a book mean something and you want to find out more.  You 'read' books to yourself all the time.

I hold your hand as you venture out into the world and you are also holding mine, showing me the way. How to be a parent to a child who is often different from me.  You accept my mistakes and tell me it is ok.  Your frustrations at what you are unable to do, turns to cuddles and snuggles when we have worked it out together.

You love to play games together and are not bothered if you win or lose, in this you are like me not your competitive brother or father.

In the last year you have learnt to swim and ride a bike.

I love your company as does your brother, whom you miss deeply when he is out with friends.  Your bond is strong which makes my heart sing.  I am proud to be your mum, happy birthday my little one.

Health

On Sunday whilst out with my youngest at the village pool I started to feel bloated and not quite right.  After eating tea that evening I had to take up residence on the sofa as I was feeling distinctly queasy.  By the end of the day my dinner had not stayed down, I was hot and uncomfortable and unable to sleep.  I lay listening to the unusually endless traffic going past my house, folks leaving a music festival and hoped that I would be well in the morning.  I did, tho weak from lack of food, feel slightly better.  A morning of packing bags to go away probably did not help with my strength but an afternoon sat in the car was a good trade off.  By Tuesday I was ravenous and all was well again.

It always makes me pause for thought when I am ill.  It was hard on my children to see their mama not able to sit up or walk around at my normal speed.  But they forget when you are sat sit and make endless requests of me that I am not able to meet without mamouth effort.  I worry that I will be ill for a long time, especially when sickness is involved as I have Crohn's Disease, a condition that for so many is chronic and debilitating.  My health is good, I can be up and functionally normally after sickness usually within 24 hours.  I work hard to keep my health good, I manage my Crohn's through my diet and am strict about avoiding the foods that I should not eat to keep the disease at bay and to ensure that when I do pick up a bug/bacteria/virus it does not mean the disease itself will also return.

I would not be the mother I am if I was constantly suffering with a chronic condition I don't know how mothers that are, do.  I don't know where they find the strength to get themselves up and through the day with their children by their side.  I admire them.  When I am ill I need to hide away and rest to regain my strength.  I am grateful for my health, but know that it is important to look after myself so that I can be the mother I want to be to my children.

Four

This is not my usual Wednesday post, sharing knitting and reading.  I have knitted very little this week, the last few rows of the baby cardigan I posted about last week which is now off the needles with the ends tidied up, needs blocking and buttons.  I have read nothing at all really.  I have been busy camping, canoeing and getting prepared for both.  We have also been celebrating, my youngest turned four this week her birthday was on Saturday but we were busy away helping out at a scout camp so we postponed it until today.  She loved the knitted animals I posted about yesterday.  We had a small celebration with a few friends over for a play, a birthday lunch and a chocolate cake with candles, her requests!

This last year has felt like a huge learning journey for her, she has changed so much.  She has moved away from being by my side most of the time whether at home or out and about to being away from my side most of the time.   These words are for her.

I love your enthusiasm how when you are excited and happy it positively oozes from you, your face,  your body, your outstretched hands.  Your smile always lights up your face and my heart.  You love to cuddle and snuggle and you often suck your thumb and play with my ear.  I love how you count, sometimes you get the numbers in the right order, sometimes you choose your own order, when you count the carriages on the trains that pass our house you pick random numbers and then proudly announce how many there were.  You love to tidy.  You love to help me cook, stirring, measuring, whisking and chopping.  You have grown your own pea and bean plants from seed which we transplanted a few weeks ago and you go to check every day, watering them when the ground is dry, you are fascinated by all the plants growing in the garden and bring me back reports after your visits. You love to make and create things out of all sorts of stuff you find round the house, you know where to find the glue and scissors and can use both with proficiency.  You sing constantly mostly songs you make up both the words and the tune.  You love your big brother and miss him when he goes out with daddy alone, you play games together and tell him in a loud strong voice when you don't like what he is doing.  We know where we stand with you, you express yourself so well and tell us when you are angry, sad, happy or excited.  You are a pleasure to be with and I am proud to be your mum.

Crohns

I have been living with this disease for over fifteen years, this is about my journey.  Crohns disease is a inflammation of the digestive tract.  It has similar symptoms as ulcerative colitis.  Along with this condition they are sometimes both referred to as irritable bowel disorder or IBD.  They are often referred to as a Western disease.

My journey started with a flare up which left me utterly exhausted, I was barely able to leave the house and had no idea what was causing it.  I visited the GP and was referred to a consultant for further tests.  I was given the diagnosis of unspecified colitis at this point.  This was the first of many such visits to several different consultants in various parts of the country, I was moving about a lot at this time as the work I was doing was mostly fixed term contracts.  After a few years, many lesser flare ups, and many tests I was given a diagnosis of crohns disease.  I took steriods during the first and worst flare up and anti-inflammatories from time to time from there on for a few years, that is until I started to feel run down and lacking in energy without a crohns flare up.  I had various tests and it was established that my bilirubin count was raised, the GP concluded that it was probably a side effect of the medication I had been taking.  Around the same time I consulted the GP about my diet and was informed that what I eat has no effect on crohns.  This was a turning point for me.  The medication I was taking was now effecting other vital organs and how could a disease of the digestive tract not be effected by what you are eating.  I had established that the long term prognosis of crohns is not good, I was, at some point in the future, most likely to need operations on my digestive tract to remove unhealthy, worn out sections.  I was young, single with my future in front of me, I would not be able to enjoy this if I was struggling now.  I had an active job, working outdoors, although I in future I may not continue to work outdoors, I wanted to enjoy it walking, canoeing etc.

I then started to research alternatives.  This was the days before the internet was the mass of information that it is today, so it was not that easy.  In the end it was my Granmother who came up trumps.  She found someone who could do a food test which I hoped would establish which foods I should avoid eating.  The test, for me, was a turning point.  Sadly in my naivety, eagerness to find a solution and moving house I no longer have any information on who carried out the test or what kind of test it was.  I also did not ask why I needed to exclude my particular list of foods.  My list is:
cow's milk, tea, coffee, red wine, all citrus fruit, raspberries, cranberries, elderflower, tomatoes and peppers.  I am vegetarian so was not tested for meat or fish.  Cow's milk is only in it's raw state as milk or cream all other milk products (cheese or yoghurt) are fine.  So I started to exclude these foods from my diet, within a week I felt different and within a month I felt really well, my energy levels were good and the bloating feeling I had after every meal had gone completely.

I met and married my husband and five years after the test I got pregnant with my first child.  I had been led to believe that crohns often goes into remission during pregnancy.  As my crohns was very much in remission already I was not sure if I would notice any difference.  I got lazy about sticking to my diet and 7 months into the pregnancy I developed obstetric cholestatis.  This is a condition whereby the liver function is impaired and there are toxins in your blood as it is not cleaned properly.  A symptom is itchy hands and feet which are worse at night.  Sadly for me this led to a chain of events which ended four months later with me in hospital with a crohns flare up, unable to keep food down and a 10 week old baby who I could no longer breastfeed.  After a few days in hospital I discharged myself, I was there to be fed and nurtured back to health but the hospital was experiencing a prolonged power cut due to stormy weather and nearly every meal was cheese sandwiches.  After a period of soul searching as I was not longer able to breast feed, could I have done things differently, what if's, I realised that actually what was more important was getting strong and well and staying that way so I that I could look after my baby and be there for him as he grew up.

I now had a consultant who wanted to see me on a regular basis.  I returned to the hospital a few weeks later for a check up and again six months later, thereafter an annual check up or sooner if things got bad again.  A year later I had a colonoscopy (a camera that goes into your digestive tract) to check the extent of the crohns.  For the next few years I continued with an annual appointment.  It takes over an hour to get to the hospital, I would usually wait 2 1/2 to 3 hours to see the consultant and spend a maximum of five minutes with him.  Five hours per appointment with a young child, not my idea of a fun day out.  I then got pregnant again.  I was strict with my diet and the cholestatis did not return.  After forty weeks I gave birth to  a 9lb 11oz baby with a very thick cord and huge placenta (the midwife's comments not mine), I successfully breastfed and still am.   Now that I had 2 children I did not relish the thought of spending five hours of a day on a five minute conversation with a consultant to inform him that all was well.  I approached my GP.  I now have a blood test there with a follow up appointment if necessary (any abnormalities).  The results of the test are sent to my consultant along with a report on my crohns.

About a year ago I started to get itchy patches on my hands, after many months I established this was urticaria and again this was likely to be linked to my diet.  As part of my investigation into likely causes I came across information on histamine intolerance.  I was intrigued to see that on the list of foods that are high in histamine, many of them were already excluded from my diet to manage crohns.  Throughout my urticaria flare up my crohns stayed in remission.  My list of excluded foods has now got longer!  I have included all alcohol, pineapple, chocolate, food colouring, and preservatives sulphites and glutamates.  I am still not sure why I cannot tolerate coffee or milk.  I had given up drinking coffee many years before I had the test as I felt awful drinking it, the test results also indicated an extreme reaction to it.

I am aware that for some alternative treatments are seen as bogus and untested, but they have worked for me.  I will always be grateful for my dear departed granma who found and paid for my food test.  It started me on a journey which has given me the opportunity to enjoy my life to full and to become a mother to two children which she sadly never met.  My crohns has been in remission for over seven years and I hope it continues to stay that way and I live a long, healthy and fulfilled life.  Thank you for reading my story.