Monday 22 August 2011

Blink & you'll miss it

I started back on the chemo-style shots a few weeks ago.

To give them their full title they are TNF-Alpha treatments and mine is adalimumab.

I took part in trials of the very first TNF-Alpha blockers that came to the UK (Infliximab) and I'll never forget the day, a few weeks into the trial, when I found myself standing in a Post Office queue realising I actually felt well.

It hit me like a wall. I felt OK. No pain? Check. No need to rush to the loo? Check. No nausea? Check. No crushing fatigue that makes standing in queues a Guantanamo-level torture? Check. After gingerly running through possible symptoms and finding none, I started looking around me at the others in the queue in some kind of trippy shock. I don't exaggerate. Looking back, I think I flirted with some kind of full on mental breakdown that day.

As the wonder subsided I started to feel angry. Furious in fact. Did "normal" people feel like this all the time? Really? I'd been ill since I was very young, so I knew no different, but all I could think of in that queue that day was what are you all doing with your lives?

If I had that kind of energy every day, that total freedom from thinking about pain and nausea and malnutrition I'd be climbing mountains or trekking through South America! I'd be dancing til 4am, whirling and twirling until the sweat made my make up run. I'd be Happy! Oh, surely, people who feel like this every day, people who are free are never unhappy! Why would they be? Why would the old lady behind me be moaning about the price of her gas bill and the man at the counter, why would he be so grumpy all the time? Why?

(**At this point I should point out that I live in Retirement-Central and clubbing was probably a little beyond most in the queue, but I don't claim I was feeling rational - far from it.)

In those few moments I realised just how precious life is. Every last second is a gift and if you're lucky enough to live it in good health, you are truly blessed.

Unfortunately, it's common to build up anti-bodies to TNF-Alpha treatments and born-under-a-lucky-star Suey has managed to do so each of the three times I've started on the treatments. But.....oh but, those few weeks where I feel just like everyone else. Where I can bake bread and tidy up and dance!! Where I can just be carefree! Not think about four hourly pain meds or weighing up chores against energy. Where I don't have to have a little internal cry every time my kids ask to go to the park!!

And you never know, this time it might last. This time it might give me just a few weeks longer. It might keep me feeling just like everyone else. But I can't imagine it any more. It's been too long and I've been let down too many times. If you see someone looking at you strangely in the supermarket queue, her eyes full of wonder, you'll know it was me.


  1. How beautiful. While our conditions are miles apart, I recognise the feeling of "normality" as feeling like being on some kind of illegal drug. It's a total high. May you have the best of luck in stumbling into more such episodes in the future.

    Also I'd just like to say that "adalimumab" sounds exactly like a country from Gulliver's Travels.

  2. Oh how wonderful to be given a "holiday" from the pain and exhaustion. No wonder you felt giddy with joy. I really hope that it lasts a little while longer this time. I feel a little bit that way after have adhesions removed, the only trouble is the chronic pain doesn't go anywhere, it's just I can push through the pain without worrying too much about the consequences the way I do when my bowel is in knots. I'm relishing my own version of a "holiday" right now as I wait for my adhesions to grow back and the cycle to start again. I keep thinking "maybe this time the cycle won't start again and I'll just have the chronic pain to deal with, won't that be wonderful". Oh the things we wish for when we aren't well and haven't been for a long time.

  3. I would so love to have a time of freedom like that... (I wrote alot more but the page closed and i lost it :-( )

  4. Oh yes. For me it's only the occasional day, and it's *wonderful*. But then in the days after, it hits me that that one wonderful day is what it should be like all the time, what my life could be. It's very hard.

  5. I know what you mean - I had an hour one time after a treatment - unfortunately it wasnt repeated - I felt so light like I could fly! you dont realise even on a good day - how different a good day is to being totally pain free. xxxx

  6. Sue, Great news but keep those fingers crossed if possible. Its great to be pain free for a while and enjoy life but hopefully this will last for quite a while, So enjoy

  7. Beautifully written Sue! And may I say that as a (relatively) well person, I entirely agree, and try to make sure that I'm joyful and thankful with each day despite the endless minor inconveniences and annoyances they may bring. They're nothing really compared to all the beauty and potential of the world.

  8. We're human. And so we find things to moan about. Every so often I would have a steroid infusion and also get a "holiday" from my illness. Before the days it had made irreparable damage, I was almost symptom free. But the euphoria of being well never lasted. After some time had passed I would suddenly find myself being miserable about something quite mundane. For instance I might moan about having got wet in the rain on the way to work whereas a few weeks ago I would be laughing my way there, very simply thoroughly happy that I could go at all.

    I would have to give myself a big kick up the butt and remember how precious a gift I had been given and to make the most of it before the inevitable return of the bad days.

    I don't know why, but it has been my observation that we are not made to be continually really happy. We just can't maintain that state. I think it takes work and maybe having had a taste of difficult times.

    I hope you do stay well. But don't be surprised if you have a grumpy day or find yourself moaning about the gas bill a few months down the line. And don't be too hard on yourself if you do!

  9. I'm trying to cultivate a drink problem so I can:

    1. Feel better most of the time.

    2. All the mostest successful people had and sometime overcame a drink problem: Stephan King, Tommy Cooper, George W Bush, Tony Stark and Superman.

    Mason Dixon, Attempted Alcoholic.