Basically this is me…

What doesn't kill you DEFINITELY makes you stronger

Coming to terms with the P word

on February 27, 2016

POO!!!!!

I know a random way to start a blog post, but I will explain.

In the past year I have been diagnosised with a condition called Bile Acid Malabsorption

Bile Acid Malabsorption is defined “as a cause of chronic diarrhea, with the patient having their bowels open several times a day”

This lovely definition doesn’t add the pain, the exhaustion, the fatigue, the malnutrition, the fear and the hopelessness that comes with this illness.

It doesn’t add that it took 5 months for a diagnosis, the 3 months I worked without knowing what was going on, was scared to eat, wasn’t sleeping and was turning up to work 2 hours late as I couldn’t get of the toilet. The 3 months I was bed bound as I was so ill, the 7.5 months I had off work as this illness destroyed me or the recent 5 weeks I have had off work since January due to a severe relapse.

It doesn’t talk about the 20 plus tablets I have to take a day to try and control the illness. Which on most occasions doesn’t work.

meds.jpg

 

It doesn’t talk about how after a severe ‘episode’ my husband would have to meet me at the bathroom and pretty much carry me back to the bedroom as I was in so much pain I could barely walk.

The cancelled plans, the friends who think you are a bore or the effect it has on you psychologically.

This is an illness I will always have. The medication shown above, I will be on most of it for the rest of my life. I am now dairy free, gluten free (ish) and rarely drink alcohol. Sometimes I struggle to walk, struggle to leave the house and struggle to see the goodness in my life.

And the main thing that really annoys me, is after everything I’ve been through I still struggle to say POO!!! I go red, I get embarrassed. I have sat in front of my consultant, who deals with this EVERYDAY and said I still got to the toilet often! WTF!!! what is it about saying Poo or diarrhea that makes me want to curl up into a little ball and die!

I would like to say, I have got better with saying it and it is due to the lovely lady Sam Cleasby. If you don’t follow her blog you should! Sam has been diagnosed with IBD and even though we have different illnesses her strength, her courage and her openness with her illness have really helped me cope. When my health deteriorated so quickly last year, she had written a blog post about using a disabled toilet that went viral. She was the voice I needed to hear and I have followed her blog sobadass.me since. If you read this Sam- I just want to say Thank you so much. You have kept me sane the last year and you are awesome!

I was also lucky as I found a wonderful support group on Facebook. Anyone reading this who has been recently diagnosed with BAM – sign up now! www://facebook.com/groups/176952655839795

My experience has shown that doctors do not have enough knowledge of this illness and it is not well known. Finding this group has been wonderful as I can ask them all the random question I have running in my head, If I am scared, or low or confused, there is always someone online I can speak too.

So there you go, That is me.

I hope that this post will help anyone else who is ill, not just with my condition but any condition. Chronic Illness is horrendous and having an invisible illness makes you feel so alone. In the last year I have been discriminated against so many times as people do not understand what I am going though so if I can end this post with one thought it would be this- Be Kind Always.

be kind

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