Tuesday, April 27, 2010

Collateral Damage

Today was a tough day for me. I am adjusting my medications, weaning off steroids and increasing immuno-suppressants to keep me in remission from Crohn's after a very successful surgery. The difficulty with my medication is the side effects I need to tolerate. They can be so unbearable at times, and some days I don't feel like myself at all.

Weaning off steroids is a tough job. I am now down to a tiny dose, 5 mgs, on alternate days with the aim of stopping altogether after 4 weeks or so. I didn't take any yesterday, and so I took some today, and within hours I began to feel the effects. I already had an aching body, a headache, photo-sensitivity that hurt my eyes etc from the immuno-suppressant, and the steroids made me edgy and irritable and in no time at all I found myself barking...at the kids.

This, for me, is the hardest part of living with chronic illness - the collateral damage that happens while battling Crohn's, and in my case it happens to my kids. There was a mix up about CCA's and pick-up times, and I got 2 phone calls with my sons protesting that they couldn't find their sister...I barked and got mad because I was miles away and I didn't have a clue where she was either...but neither did they! Eventually she was found in the Music Room attending her singing class which I had forgotten all about. Oh my. Apologies issued to my dear sons.

Then there was Maths homework or rather class work to finish because my girl took her time in class, and so I got an email from the teacher and we tried doing the work. Ooops, Mama wasn't in the right mental state, and so we spiralled into a tense state of my scolding her and she tremblingly fighting off tears. Oh dear. Apologies to my daughter.

And then my youngest son wanted to watch a movie before bed time...after playing on the X-Box. There was just no time left at all. Barked at him and told him in no uncertain terms that he couldn't because he was due to go to bed. Tears and unhappiness. Oh no! Another unhappy child.

What a day! A week's unhappiness squeezed into one sad day. I found myself in tears too. I understood what I was dealing with in terms of my meds, but how could I explain that to my kids? And how unfair for them too, to have to suffer in this manner. But this is one of the realities of life with chronic illness. When the patient has a bad day, for whatever reason, be it pain, medication, depression, etc many times others around them suffer too.

There was a silver lining in the midst of it...my eldest son showed a maturity beyond his almost 14 years. He spoke calmly to me and quoted from his life sciences class today, that scolding and shouting don't help a child learn, or respond well, and it stresses them etc, and he offered to help his sister too... I was amazed and terribly embarrassed! I knew all that, but in practice it had flown out the window, and my own child was telling me how to parent... and he was right too! I am glad I took it in the right spirit instead of brushing him off. I later made up with him too and told him how much I appreciated his wisdom.

All ended well, and tomorrow a little extra time on the X-Box will mend everything and we'll carry on as we pretty much do, in relative peace. I do hope I can get a handle on myself, despite meds or anything else. I so desperately want to be a good example to my kids, and how to be one if I bark, and scold, and dissolve into tears in this manner? Some days I comfort myself that other parents also have bad days...but then no one ever talks of them, and so I'm not too sure if I'm normal or a sad and terrible aberration on the face of planet parent. oooh drama mama alert :)

I stand back some days and I am amazed that my kids are decent and normal kids (as far as I can tell!) and I thank God for that. I thank God that He is teaching me that I am not the centre of their universe, and that despite my weaknesses and faults, which are many, my family will be alright. I pray for that often, more so than for my own personal health or gain or anything else.

I remember a book title I saw years ago that I have mentioned elsewhere in my blog, but which bears repeating here : "If Mama Ain't Happy, Ain't Nobody Happy!". Today I saw that to be true. It was real. I wasn't in control, and everyone was unhappy...thankfully Papa came home and saved the day :) Wonderful Papa who is so cool and calm and collected...I thank God for him too!

What then to do with myself and my meds and life and its stresses? I had a good cry, apologized to those involved, made restoration and have stopped hating myself. I think tomorrow might just well be a very good day. I live in hope that TOMORROW WILL BE A BETTER DAY! Maybe I should go out for awhile...wander about and be at large and burn off a bit of my edgy energy, and then come home relieved to be back and happy to see everyone...I think that's a plan! I hope it works! :)

Thanks for reading!

pav

2 comments:

  1. Dear Pavitar,
    at his acceptance speech at the Oscars, the actor/director Roberto Benigni ("Life is Wonderful") thanked his parents for "the most wonderful gift of all... the gift of poverty" (watch on YouTube!). And see what became of him! I think children know instinctively what their parents want them to have but may not be able to give, and they know because all the while they are being loved.

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  2. Thanks so much for those encouraging thoughts, Isabelle. I deeply appreciate it. I miss you :)

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