The Girl with the Strange Eosophagus

Hospital hugs with The Chef

Hospital cuddles with niece Pearl

Pain can’t always hide

Post written 27th July 2012

The last 6 months have been quite a journey for  both me, and my husband.  Not a lot of people really know the full story, and although I have put some facebook status updates yelling that ‘I can’t eat’ out into the vast internet world, I really have been hush hush about the reality of the whole thing.

I haven’t been able to eat solid foods for 6 months, only liquids and have had constant searing chest pain 24/7. How did this start? Well  it’s all a mystery. It looks to be now a problem with the nerves in my oesophagus.

This is the story…

12 months ago I started to get heartburn type pain on and off. The doctor put this down to stress and I trialled all the different heartburn medications over the 6 months. The heartburn then started to get worse, being a constant burning pain. One night I was eating dinner at home alone and suddenly was dropped to the floor. I thought I was having a heart attack, with burning pain in my chest and my throat felt like I had swallowed 10 multivitamin tablets without water. Curled up in a ball on the loungeroom floor, I tried to reach for the phone but it was too far away, so while my chest was burning and I couldn’t yell out for help I layed there for what must have been an hour until the pain slowly decreased.

Over the next three weeks I found it became more and more uncomfortable to eat dryer foods and this ‘heart attack sensation’ happened another 3 times. The pain in my chest turned into something that was constant and unforgiving. Soon, any time I ate any type of food it felt like it was stuck in my chest but not just an indigestion pain,  a heart attack pain.

Breakfast, lunch and dinner for 5 months to keep up the calories as well as Protein, vitamins and minerals. They taste absolutely horrible.

So, I had to stick to liquids only. Even pureed vegetables were extremely painful.  I had xrays, and 2 endoscopies which all revealed no abnormalities. After 3 months, even drinking water caused severe pain.

The type of pain where the world stops. The type of pain where you can’t even hear the person standing right in front of you talking. The type of pain where you really just want to go to bed and not wake up.

I was in Bundaberg at the time, working at the hospital as a dietitian as my final and 4th year of university. One night the pain got so severe I went to the emergency department, who were unable to help me as I was a medical mystery.I couldn’t eat, couldn’t drink and crying in pain so I got in the car and drove almost 4 hours south to the Sunshine Coast where I was admitted at the emergency department of Nambour Hospital.

I spent 3 weeks here, still only able to eat (drink) liquids. I was poked and prodded with blood tests every day, and wheeled off for every test under the sun. For a long time I remained a medical mystery until the doctors finally figured out what was wrong with my oesophagus, and then every couple of days would have a different diagnosis. At the same time, I was being pumped full of so many different medications including morphine for pain and valium to relax the muscles of my oesophagus all of which zonked me out of my brain and for the first 2 weeks in hospital I was a dribbling vegetable laying in the bed. I was overdosed on these medications due to my small size and developed liver disease as a result. I lost 4 kg in a very short time (which is a lot for me being 47 kg to start with) as I struggles to keep up with the amount of kilojoules I required.

People have called, emailed, texted asking ‘how are you Tara’ and I always answer with ‘Yes not too bad’. The reality has been that for 6 months now, when people asked that question I have given that answer at the same time as being in immense pain, passed out on the couch all day on crazy mind altering medications. I struggle to even get up off the couch and make myself a cup of tea.

Pain is a funny thing. It is real to the person living it, but unreal and unfathomable to people looking from the outside. I had people say to me ‘why don’t you just force the food down, it will  be good for you’ and in my mind I would always be thinking this: If someone was sitting and smashing your hand with a hammer to cause immense pain, would you willing put your hand out and ask for it to be smashed again? No. Your instinct is to protect your hand, keep it safe and remove it from the thing causing its pain. I’m in no way a mater, but I don’t like to complain you see. Maybe it is denial that I have been unwell, maybe I don’t want people to perceive me as weak or not in control. It might just be that even though I never mind listening to other people’s troubles, I have a preconceived idea that other people don’t want to hear about mine.

This 6 months of not being able to eat, have been torture. I love food you see. I live for food. The only food I don’t like is raw tomato. I can go to a restaurant and choose anything on the menu. I can go to a friend’s house and be happy with anything to serve me. So this was another battle I had to overcome.  I had nurses accusing me of having an eating disorder, a phobia of food, or even more crazy a fear of getting fat. Those people who knew me well knew that this was the most absurd suggestion in the world, and luckily for me all the doctors and specialists also knew this.

It is such a difficult thing to go through when someone is accusing you of being someone who is the total opposite of who you are, and also making reference to the fact that your medical condition is psychological. Not to mention the gut wrenching feeling of seeing people eating around you, and you can’t eat. It has been hard for my husband Jeff too. Although he has never complained, it pains him to not be able to ‘fix’ the situation and see his ‘normally bubbly wife so sad and quiet’ he said.
So up until the last 3 weeks, I have been lying in bed for 6 months. I realise I haven’t been working 50 hour weeks, stressed out with  no sleep. I haven’t been looking after children. I haven’t  been labouring in the hot sun all day. But, I have been battling pain. And for those that have experienced chronic pain, they will know that this is a full time job. It is a physical job as well as a mental job. There are some days where I hardly have the energy to lift my arms from by my side. Where walking to the letterbox feels like a marathon. My body is dealing with pain in its own way, and my mind is running in overdrive. The hardest thing is not being able to do the things I want to do, or be the person I want to be.

The wonderful news is, three weeks ago I trialled a new medication for nerve disorders. Not one of the medical professionals believed it would work, and were just stabbing in the dark. After 6 months of no answers to the problem I didn’t think it would work either, but amazingly 3 days after the first dose I was able to eat soft noodles and have been able to ever since. I still have the bad chest pain, but am learning to cope now and there is some light at the end of the tunnel.

Good days and bad days, finding my feet again

I continue to try each day to remain optimistic and I now find simple pleasures in the world around me. A bowl of plain noodles tastes devine, and mashed pumpkin tastes heavenly. A walk down in Noosa Junction with the sun on my face is exciting, and spending time with my supportive husband is all the more special.

The cranky lady that serves me at the check-out is not Miss Cranky Pants any more, but maybe a lady who has a sore back and struggling through the day, not necessarily angry at me.  Although I have had to put my studies on hold (which was so upsetting) I look forward to getting back in the swing of things soon.

26th May 2013 UPDATE (almost 12 months since original post)

I am eating, in almost zero pain and off the neurological medications that made my mind numb.

It was 12 months of only being able to eat liquids and 18 months of chronic pain.

Life has changed so much in such a short 12 months since I wrote this post. I now work full time doing a job I love, have met people I have only been lucky enough to meet because of my silly oesophagus and graduated from University as a qualified Nutritionist. I would love people who are going through a hard time at the moment to know that it won’t last forever. I might last a long time, or a short time but you WILL come through the other side. As long as you can accept that you are going through a hard time in your life at the moment and have the courage to ride it out, I can assure you…you will get through it.

I have come out the side what I believe to be a more tolerant person, a more positive person and much more forgiving of myself and others.
I have experienced some absolutely amazing things over the past 12 months and realise now that my strange oesophagus was all part of the plan to push me in the direction to achieve those things.

So, stay happy – stay healthy – stay positive – don’t take things for granted – and enjoy the small things in life. Ask friends if they are ok and be tolerant of people and their personal situations.

If you have any comments or thoughts I would love to hear from you.

The Nutrition Guru x

Twelve months later