Getting my life back

COLON-NO-TAG
A happy colon… if only!

Here it is – D-Day has truly arrived. In less than 9 hours I’ll be checking in to hospital starting the journey that will, eventually, separate my colon from me for good.

Rush of feelings and thoughts – anxious, excited, hopeful, realistic, but most of all… I can’t wait to get my life back.

Close to 8 years have passed since I was diagnosed with Ulcerative Colitis, just two weeks into a new job! And unfortunately for me, I was something of a bad case… and a medical marvel… to the extent that even cutting-edge drugs referred to as biologic therapy (a form of chemotherapy which acts by intervening on the cell and attempting to turn off one of its functions) have failed miserably.

The basic premise of UC is that my immune system is faulty, it can’t switch itself off, and this results in severe inflammation of the colon. This in turn brings about ulcers throughout the colon, bleeding at times leading to anemia (sometimes requiring blood transfusions), several urgent daily visits to the bathroom lasting up to an hour each (it’s been 20 daily visits of late and note: there are 24 hours in a day!), interrupted sleep, extreme fatigue, excruciating joint pain (tendency towards rheumatoid arthritis is another lovely side effect), iritis of the eyes….

So all in all, a lovely package wouldn’t you agree?!

Of course, the worst thing of all is the way this affects my life. I’ve forgotten what the inside of a wine bar looks like, going to the theatre or cinema is out of the question, taking my son to the playground is something I can only enjoy through the photos his dad sends me, and I regularly need to inform work colleagues that I may not make it through a meeting. Yes, I may look well on the outside as some well-meaning (but no, really) people point out “oh you’ve lost weight” or “but you look so rosy”, but I’m really not well at all on the inside. It is what is termed an invisible disability – because in truth, one is not able to lead the life one would have led till then but on the outside, nothing shows.

 

Mount Everest
Hmmm, looks easy, no?

So here I am – less than 48 hours away from a major operation (my surgeon has likened it to scaling a mountain) that should in theory change my life once again. I can’t wait for this, in truth. The last 8 years have been very challenging. I’ve had to learn to be a different person to the one I used to be, I’ve had to learn to make allowances (such as planning my trip in to work along a route which would allow for emergency bathroom stops), I’ve had to learn that I can’t do it all, that I need to rely on others to survive the day. And I’m one of the lucky ones because I have a very supportive partner who has lifted more than his fair share of the weight, who has managed to keep a sense of normalcy in our young son’s life.

human-450380_1920
Let’s get the party started.

But I’m a doer. Learning to slow down, to accept my limitations has not been easy. I suppose that in itself was a good take-away from this experience. As was appreciating that everyone is struggling and that it is not always apparent, I have learnt to be more understanding, less quick to jump to conclusions, to give the benefit of the doubt. I’ve learnt to really seize the moment, to enjoy those fleeting moments of well-being, to be IN the moment. As I prepare, as much as I can, for this event, this suspended moment of time in my life, here’s what my real bucket list is going to be and I plan to revisit this post and start crossing things off it, the sooner the better.

 

My bucket list

  1. Take my son to the beach, to the playground, out for a walk, off for a picnic.
  2. Choose a restaurant based on the food we want to eat and not the toilet facilities and parking available.
  3. Go on holiday and leave our accommodation to go exploring in the morning hours (as opposed to the afternoon).
  4. Stroll down the streets of our beautiful capital city of Valletta.
  5. Head off to a wine bar with good friends and have a great evening drinking copious amounts of Bacchanalian delight.
  6. Join a dance party.
  7. Check out the what’s-going-on section and book a few plays.
  8. Go to the Jazz Festival again!!!!
  9. Sleep a full night.
  10. Stay up till 5 am because I want to, not because I have to.
  11. Not have to check the amount of spoons available the moment I open my eyes.
  12. Go for a bus ride (no, I’m not crazy, but my three year old is!)
  13. Look forward to a school event without having to worry about loos, sitting down, or just simply getting there.
  14. Take up some activity that I’ve had to put off, such as learning German.
  15. Going out into the field again with my camera.
  16. Not have to swallow c. 20 pills a day.
  17. Accept invitations that weren’t possible, such as opening of art exhibitions.
  18. Go to the beautician and sit through a whole treatment session uninterrupted.
  19. Make plans and stick to them.
  20. Not feel pain.
  21. Eat raw veg and fruit – salads here I come!!!
  22. Return to yoga.
  23. Take up Tai Chi.

Till then, I’m psyching myself up and this is what I’m going to be belting out as they wheel me in to the theatre – fair warning to my surgeon! (And if I want to drive the ward mad, I may just about play this at full volume :D)

 

Bonus: check out my soundtrack page for more musical inspiration.

 

UPDATE: UC strikes again. Since my immune system is severely compromised because of the immunosuppressants I take on a daily basis, I developed a cough on Saturday evening which went down to my chest. So I was sent home today, told to recover a bit more, and have to check in again on Friday with the op scheduled for Saturday. Another thing I’ve had to learn – patience!!! So glad I’m in such good hands,  though. Shout out to my consultant and surgeon at Mater Dei. And big shout out to a fantastic national health service that allows people to get cutting edge treatment FREE!

UPDATE 2: D-Day is here! In less than 10 hours I’m being admitted to hospital for a subtotal colectomy the following day. Posts to follow.

UPDATE 3: Click here for more on my post-op experience.

11 thoughts on “Getting my life back

  1. Best of luck sweetie. I didn’t realize you were having such a difficult time . Hopefully once the surgery is done you can slowly start ticking off your bucket list. Thinking of you all.
    Xxx Liz

    Liked by 1 person

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