Hello!
Many of you will know one of my conditions is oesophageal achalasia. A mouthful [ sorry could not resist this one!] and so sadly misunderstood!
The condition only affects approximately 6,000 people in the UK each year although from my experiences and those of many others who are misunderstood , humiliated and left distressed and anxious by the people they meet there are possibly many more struggling with the condition who have not been diagnosed! OK this blog is my opinion but stop for a moment and imagine what this is like!
As you swallow food having chewed it well it travels down your oesophagus and into your stomach. It has to pass through a value at the top of your stomach to get in to be on its way in the journey of digestion. IF the value fails to open to allow food to pass through what happens then is achalasia symptoms.
Agony of pain so severe that people are often mistaken for having a serious heart condition - I was and of course when they discovered it was not my heart once again I was ignored and left in agony! Sickness and sudden regurgitation of food often eaten days or even weeks ago can happen because the food has been sitting in the oesophagus and is not digested. You might find you wake up in the night not only in agony but with a dribbling mouth and a stained pillow from food which you ate days ago! You loose weight except I didn't because I was not absorbing my medication for a very underactive thyroid and so the "experts" once again did not believe me! Fluid and food particles can go into the airways causing chest infections and pneumonia - again then you get sent off to the chest dr's who in my case did not recognise achalasia as a condition and so again as it was not "asthma" and yet I was wheezy and had odd lung function results nobody could give me a diagnosis!
So once the gastroenterologist diagnosed what was wrong [ oh yes and the investigations are stressful and horrid when you feel scared , alone and in pain!] what happened then? Well there are options of having the area stretched [ balloon dilatation], botulinum toxin injections and surgery - major surgery. I had the first two and was prepared and had the anaesthetic for the surgery. The surgeon then decided due to the other conditions I have this would leave me worse off and so thankfully he did not operate! I was shocked and confused when I came around and the option of having this forever on top of progressive conditions was distressing to say the least!
I lived on dietary supplement drinks and was feeling so ill. People who are well or who can eat and drink read about achalasia and think - oh well its only ..... All I can say is try living with it for a day or two and see what you feel like about it then! It makes me so frustrated when professionals or others who are involved with your care and needs assume it is only a question of adjusting to a new diet or a few pain killers will sort it out! Wrong as pain killers can often leave you feeling worse and even with a controlled dietary intake you can feel dreadful because even fluids often won't go down and you end up back to square one, in agony, disturbed sleep, lack of social contact and a whole load of misunderstanding to deal with on top of your condition!
How do you cope with work, relationships, day to day living tasks if you cannot bend over without food dripping out of your mouth, what about for the younger people - how do they cope with school - missed education, lack of social events as so much revolves around food and meeting for coffee etc. Who wants to sit and watch others eat when they feel so ill? I am fortunate in as much as I have learnt to adjust to this and have fantastic friends but I was lonely and scared and people would say stupid cruel things like "oh I didn't invite you because we were going to have a meal first or we didn't think you'd be well enough"! They soon learnt to let me decide as I had not lost my ability to think - just my ability to eat! Many are not so lucky and ignorance and assumptions when dealing with any chronic condition are cruel and not required in most of our lives!
So now I do not eat and I rarely drink! I have enteral feeding because I have other conditions too. No I am not anorexic! How cruel a situation for somebody with a rare and misunderstood condition to have to face the humiliation of some "professional" assuming they know without ever asking what it is like to live with it and really hearing the answers! I suspect even if I had "only" [ LOL to those sad people who think it is easy to manage!] had achalasia I would still have ended up with enteral feeding as the treatments failed each time. I used to be so positive after each one willing myself to be OK and as soon as I went back to out patients I would have to admit things were useless and I could not manage any more swallowing function than I did before!
OK, a little bit of very honest writing today but there is no point in me not telling my story and then asking you for yours! It can be as a message here or in an email. Of course if you would like it published here it can be either with or without your first name - the choice is yours and yours alone!
What I would say is some people have successful treatment for their achalasia but many do not! Please don't make assumptions when you meet somebody with the condition. I can assure you it is tough enough to go through the pain, diagnosis and treatments without the misunderstanding and horror of feeling like you are not believed again once you reach that stage!
Thanks for reading my story - or a very very small part of it!
Chris
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