More Achalasia advice that I stole from someone else

I admit it, I am a thief...I stole this advice from someone else’s site...I just thought it was good and decided that if I added it to my site it might reach a few more people....OK I know that there aren’t that many people out there to whom it will be appropriate, but hey, does that make it any less relevant? My own feelings on the suggestions are in brackets and italics

Outlined below are support suggestions from sufferers of Achalasia. Those quoted are from all stages of the disease and have had a variety of treatment options. Please read the information below and even print it out to discuss with your friend or family member who is suffering with this disease. A frank discussion can help both of you manage the illness more effectively.

While reading the information below, please keep in mind that Achalasia will affect the patient for the rest of their life. It is not only chronic, but it is a degenerative illness. Therefore, surgery and other treatments are not cures, but rather “stop-gap measures” to help the patient have a better quality of life.

Things to do or say

• Listen to the A. patient's explanation & believe it & try to understand it (they find it unbelievable that they cannot drink, too!). (Oh yes, I do...!)
• Supply cookies/biscuits without saying how bad it is for your diet, it is often the only food that goes down. Find out what foods work. (Biscuits = good, apples = bad and no, it makes no difference if you chew them well)
• Be patient – eating is a slow process. (very slow...)
• If sharing a meal, make sure that there’s extra water on the table in case the patient forgets. (In my experience, this is a huge help)
• If you want to (or have to) dine out suggest a place to dine that has a big variety of foods not just a fast food place where you may be limited. (Another helpful thing) Remember it is easy to start to withdraw when you can’t go out and share meals with your friends.
• Do listen when we need to talk about our concerns, and be compassionate when we're not feeling good. We know you don’t have the answers. We may just need to vent. (Oh yes!)
• Laugh together, but not at our predicament. We already feel a bit freakish.
• Remember, this is not a problem with the throat – getting food past the throat is the easy bit...

What NOT to do or say

• Please don’t say "I thought you couldn't eat that" when the person with A is having a "good" day (why are there good days and bad days? Doesn’t make sense, but it seems to be true).
• Please don’t offer unsolicited advice (for example, insisting there is a problem as a result of drinking soda, etc…).
• Please do NOT tell them about Slim-Fast, Ensure, any diet drink and ask if blending food works. Achalasia affects swallowing both liquids and solids. They have probably tried everything.
• Don’t pretend you know what it’s like to have the stuck feeling, and how to get rid of it. This is different. (Sorry, but this really is true!!!)
• Don’t pat them on the back while they are having trouble swallowing– it’s not choking. Talking is a problem (or may not be possible) when they are having trouble….it’s all about concentrating on getting it down. (Oh yes, and it hurts so that’s why I go red in the face and look like I am going to cry)
• Don't let the first thing out of your mouth be “Aunt Susie didn't swallow well and she had this terrible heartburn. But she got better with the right medication and I am sure yours will be fine too.” Sorry Achalasia is not GERD.
• Don’t be upset when they can’t tell you what they can and cannot eat at times. It’s down to not even knowing. Believe it - this is a weird disease with apparently no rhyme or reason.
• Finally, sorry, but however long you wait, it isn’t getting better and isn't going to get better without treatment... .

Here are some suggestions for words to type into Google so that you know the basics.

Achalasia, Heller Myotomy, Manometry, Dysphagia

I’m going on a date...Surgery date that is...!

I have been given a date for surgery^*1...it’s soon...in fact, it’s next Monday and so I feel an urgent need to get some stuff down on paper in the hope that it might be helpful to anyone else out there who is feeling just as freakish as me. Yep, you heard right – freakish!

Not being able to eat or drink without at least some discomfort makes you feel really weird. Mostly you can’t be bothered with food, as eating becomes a chore – something that you know you need to do, but holds absolutely no pleasure. Hubby is always asking me what I fancy for dinner... "Um, nothing" is usually the response. How can you fancy anything at all, when you don’t know what you can get down you? Trying to eat with friends or family seems (to me) to often result in pitying glances...Actually, that pity is appreciated, as at least it shows that they know you’re having a hard time and they are sympathetic to it. Strangers on the other hand see you going red in the face at the table, they see you leave your food and who knows what judgements they make? Somehow you feel a little ashamed for the waste of it all too – you want to explain there’s a problem, but it’s not really a dinner table kind of conversation, is it?

The fact of it all is that to eat a normal diet just hurts too much. I haven’t eaten bread easily for almost a year and my diet has become increasingly liquid - more and more soups and porridge etc. Less and less meat and vegetables and anything good for me; more yogurt, more custard (there’s some compensations then!) but less fruit. Do you know how boring it all gets after a while? I want toast and MacDonald’s and Subway and pizza and roly poly pudding (but not all at the same time) – but to try them at the moment would simply result in tears at the dinner table (if you eat things like MacDonald’s at the table which seems unlikely ....!). Anyway, if you have some issues like these, you know where I’m coming from – right?

The not eating is pretty awful, but supremely more gross than that is the following (now I’ve warned you so don’t blame me if you get all grossed out!). OK, the scenario is this – your stomach valve doesn’t open so food takes hours and hours to drip from your oesophagus through into your stomach (assuming you are upright and gravity is working fine today). Imagine if you will that you drink a cup of hot chocolate just before you go to bed. You lie down (gravity is effectively switched off) and the liquid goes nowhere. At 2am you slide down the bed a little and off the pillow and suddenly wake drowning in (no longer hot) chocolate. Yep, you breathe in your yummy drink (see I told you it was gross) and wake up violently coughing and spluttering. Frightening or what? It’s called aspiration, and it’s not very good for you (no? – you don’t say!!). If you have achalasia and you leave it untreated, this can lead to infection and you can get aspiration pneumonia....there – lesson to you – if you think you have achalasia – GET IT CHECKED OUT!

Anyway, I am getting fixed and although surgery doesn’t cure the condition it’s supposed to alleviate the symptoms and that’ll be good enough for me. I can’t wait to get back to seeing food on my plate without viewing it with suspicion!

^*1Heller myotomy