I know what's coming, I wish I didn't

The thing about living with chronic illness is that after a few years, in my case almost 16 years of symptoms and 13 years since diagnosis, you just know so much about your illness. I know all about it, and sometimes I wish I knew nothing. I know what to expect, and what meds can do to me, what surgery is like, what months of endless symptoms I have endured and the desperation of trial and error experimenting with drugs to find the optimal dose.... and sometimes I wish I knew nothing. That I could just face each experience with a blank slate and let a new experience leave its mark, not anticipating what is going to happen based on former experiences.

That would, however, negate the value of lived experience, or is that experienced life? :) Yes, I do wish I didn't know that trying an immunosuppressant like azathioprine would cause havoc on my system, but I knew when I began going on it this second time round last August that it would be hard for me, because I had tried it before. In fact, the side effects were worse this time. When the dose was increased to the appropriate dosage for my weight I went through nightmarish migraines and vomiting... and having gone off this drug for just 5 days I feel transformed. I feel alive again. I have no headaches, no vomiting, far less photo sensitivity, no feelings of constant fluey-ness and extreme fatigue. I literally feel transformed. I feel good.

But the Crohn's symptoms aren't under control. My tummy isn't well. We're standing by 2 antibiotics to deal with the watery diarrhoeas... but I am afraid to take them, again because I know what will happen. I will have even more diarrhoeas, almost uncontrollable. I will be drained and lifeless. I often get depressed on antibiotics. I will be afraid to leave home because I need the comfort of my own amenities. I will lose my apetite and eating will be a chore. I will feel ill, in the hope of feeling better.

I have decided not to take these antibiotics yet. Just waiting in the hope that my tummy will settle on it's own maybe soon... though that isn't likely to happen. I also have a busy weekend coming up and I don't want to be toilet bound... I want to leave home and do stuff with my kids and friends. I want to live. I want to make plans and be able to fulfill them, not have my life hijacked every now and then by meds, side effects, the disease. Maybe next week when the kids are back in school I will be brave enough to take this double whammy of antibiotics. Ugh.

This version of the disease that has returned after surgery seems to be a tough cookie version. The kind that is defying the usual meds. What's left in the arsenal of weapons that I haven't tried before? Should I resign myself to a life of endured side effects in the hope that somehow I will get better, even if I never feel better? But I want to actually feel better, not just remain symptomless!

What quality of life is there if symptoms disappear but a person doesn't actually feel better? If the side effects from the meds make you miserable then what's the point? Ah, but if we don't get the inflammation under control it will result in eventual strictures/obstruction necessitating surgery, and I have already had 40 cms or so of my small intestine removed. I don't have a lot to spare for further surgeries!

So yes, I know what's coming. Trial and error... let's try this or that and see what happens and fine tune and tweak. And test our blood and urine and occasional stool samples and along the way we'll scope and scan and x-ray and monitor. And somewhere in the midst of the many weeks and months of all this going on, somewhere in the midst of all this trial and error, living occurs. I continue to function and do what I can. But will I find that sweet place in the spectrum of trial and error that will result in my going into and staying in remission ie symptomless? And at what cost, this "symptomlessness" if the side effects torment me?

I wish I knew nothing of all this. Oblivion. Or is it Ignorance? Yes, ignorance is indeed bliss. Not knowing is easier than knowing. Though I comfort myself that having gone through what I have I can encourage others, and yes, I can steel myself for what is to come. I can shed a few tears knowing I will suffer but I have always seen the light at the end of the tunnel, and some days it's been manageable and others days not so... but overall I'd really have to say life is good.

Despite everything, life is truly good. I remind myself often that I am blessed. Family, friends, love and affection, 3 square meals, a lovely roof over my head, some ill fitting "fat on steroids, skinny in a flare up" clothes... I have so much. What's there to complain about? Nothing essentially. The discomfort, the occasional pain, the indignity of a disease involving (Gasp!) "bowels", the mental and emotional anguish I feel, the guilt I constantly push away... All of these things are battles I fight daily. I know my mind and my heart and I know the wars I must wage in order to emerge victorious. Only I can fight this battle, no one else can do it for me.

I wish I didn't know what the rest of my life is going to be like. But I think I can imagine it. An incurable chronic disease doesn't leave many options. I have to live with all of this now, and tomorrow and probably forever. At the pharmacy the other day I saw adult diapers and my heart did a skip. Then I was scanning shelves for fun (yes, I need a social life! :) ) and I saw colostomy stuff... stuff that helps you live with a bag that collects stool once you have had your colon removed. Oh God. So much to look forward to...maybe I won't go through all that? Maybe I'll be spared? Maybe I'll just fade away quietly in my sleep once my kids are all grown up and my purpose in life and the reason for my existence, whatever that is, has been fulfilled... Maybe I'll be spared the indignities of old age. Maybe I'll face those indignities better, having suffered now? What if I just get so tired and fed up along the way? No, I must not! I shall not! Wage that war! Fight that battle! Win it!

My friend's teenage daughter is fighting for her life. She has brain cancer, and then caught 3 opportunistic infections, one in her lungs. While struggling to breathe on her own she had an undetected stroke. She was placed on a respirator for a few days, and when they tried to bring her out of sedation they realized that some oxygen deprivation had occurred, and they found the stroke. She's conscious, but not responding. We are all praying desperately that she will recover. How does someone recover from so much? It would take a miracle. God in His mercy can heal. She's so young, she's barely lived. Let her fully live, and live fully. Please, God.

I no longer seek desperately for my own healing. When confronted with the many sufferings of others, in this case my friend's daughter, and her own suffering, and that of the entire family... I feel so terribly, desperately, indescribably... normal. I look so normal no one could guess anything was wrong with me. How can I ask for anything more from God when I already have so much, and so many are in such far more desperate need than I am? I have been asked to seek healing, but I no longer actively do. God need only say the word and I would be healed. That He does not heal me in no way diminishes my regard for Him, He must be far busier dealing with those whose suffering is far greater than mine. Or not. :) Whatever the case, I have no answers, and these days few questions. I do know that I'd rather ask for someone else's healing than for my own.

Whatever the future holds, I will always know what is coming to some extent. I just pray for continued grace to accept the things that I truly cannot change, and for a loving heart to look beyond my own little world and to feel for others. If I can do that and it makes my life just a little more meaningful I am happy.

Thanks for reading.

Pav