It has been twelve months since I first started experiencing symptoms of Oesionphilic Gastroenteritis. Having this illness has taught me a lot, but it has also taken away a lot.
Much of the time like to put a positive spin on things. My blog is called “Finding my Sunshine” after all! But today is a day that I need to talk about the negative impact.
I was initially hospitalised because I was physically unwell, wasn’t absorbing my psychiatric medication so I became mentally unwell. In hospital they wanted to treat both issues.
I didn’t spend a week in hospital. I didn’t even spend a month. I spent FIVE months away from my family. Away from my life. That is a long time for anyone. But especially for a nearly four year old who needs his Mummy.
This is a short list of what I have been through in the last 12 months. There are probably things I have forgotten.
– 13 general anaesthetics
– So many CT scans, x rays and ultrasounds that I can’t even count
– an EEG
– a number of highly unpleasant examinations that I am not even going to go in to
– major abdominal surgery which incurred seven days on a surgical ward
– major complications with said surgery which almost sent me back into theatre
– 17 different medications. At the same time.
– A urinary catheter for around 6 weeks which was not only disgusting and humiliating, but led to me getting very ill from constant infections. It became such a problem that they were close to surgically inserting a catheter into my belly that would stay there for months.
– five months as an inpatient being tossed around between four different hospitals
– 10 rounds of ECT
– profound memory loss (there are still things I can’t remember from before, during and after my hospital stay)
– at least two injections administered against my will. There may have been more that I have forgotten.
– at one point I was basically living off medical formula
– surgeries and procedures that were cancelled on me at the last minute, after I had been prepped to move to the surgical ward. After I had been given enemas, drunk litres of bowl prep and undergone various other unpleasant examinations.
– two endoscopies and one colonoscopy
– months of morphine – both IV and oral. Because that’s not addictive at all.
– These days I can never see a doctor without them taking at least six vials of my blood. Today it was 11. I actually have a scar in the crook of my arm due to the enormous number of blood tests I have had. Which is actually kind of useful because I just direct the pathologist to that spot saving everyone time and hassle (I have “bashful veins”, and getting blood can be pretty difficult).
– appointments with immunologists, gastroenterologists, dieticians, psychiatrists, psychologists, general surgeons and various other professionals. I saw multiple doctors from each category.
– Nearing the end of my stay I was told that the nightmares, flashbacks and anxiety I was experiencing was due to PTSD. Trauma from being in hospital. This is not something I really talk about to people as I feel there are far more traumatic things (war, rape, violence), and I felt a bit of a fool to have been diagnosed with PTSD because of a hospital trip. But looking back it was fairly crap I guess.
I realized today that I used to be quite nervous about medical procedures and would go to great lengths to avoid any kind of treatment – be it medication or hospital visits.
Now I have become hardened to it all. I am so used to hospitals and doctors and having instruments stuck in various parts of my body that the procedures themselves do not bother me. Going to hospital appointments, seeing doctors is a pain. But it doesn’t scare me. It doesn’t make me anxious. It doesn’t really have an impact on me other than I would much rather be doing other things.
And I forget that it shouldn’t be like that. That I should be bothered. That kind of attitude actually isn’t normal.
This week I haven’t been well. I have had an autoimmune flare up.
And it all comes flooding back. I realize that I am stuck with this illness, for better or worse. I have an extremely rare, chronic, incurable disease that I have to try and manage every day of my life.
This illness has a big impact on my life, even on the days where I am feeling good. We live in a world where food is a very social thing. Not being able to eat with others, eat the same thing as others, share food with others can be isolating and frustrating. A simple thing like going to a café for lunch involves a lot of planning and consideration. Usually I can find one item on the menu I can eat. Then I need to worry about cross contamination.
But more than the inconvenience, I am so frightened that I will have a severe relapse. For us with eosinophilic gastrointestinal diseases it is not simply a case of avoiding my known allergens and triggers. My disease breaks and bends and morphs and what used to be tolerated well by the body can, without warning, put me back in hospital.
And if my body goes. My mind is sure to follow. If my body doesn’t absorb the psychiatric medication I take, I am at huge risk of bipolar relapse. The only medication that has been shown to be effective in treating my autoimmune disease causes severe psychosis.
I feel trapped. The enormity of my condition is becoming clear. I have seen firsthand how much there is to lose, and how quickly this can happen. I think I’m just realising that this isn’t going to go away. Why can’t it just go away?!
All I can do is keep my body in the best condition through diet and lifestyle, and take action at any early signs of trouble. This week as soon as I had symptoms I changed my diet to the blandest things possible. I started taking probiotics. I had acupuncture.
Today I feel better. I still can’t tolerate food very well, but I’m not in pain anymore. Maybe I dodged a bullet. Maybe in a few days I will be able to join my family at the dinner table. I just had this idealistic view that with a high maintenance healthy diet my illness was in total remission, and I had complete control. I guess this uncertainty is the nature of the autoimmune beast.
This post is different. No clear point. No photo. No attempt at humour. No time spent proofreading. No steller writing here I’m afraid.