The crash is coming. No matter what.

Loving somebody with a chronic health condition is hard. Having to watch the person you love suffer day in and out with pain and fatigue, and wishing that there was something you could do to take the pain away from them, to help them, and knowing that there is nothing you can do or say that will ease their pain - I get it, it's tough.

Watching the person that you care about run themselves ragged, using up every precious bit of energy that that they have, doing things that you deem unnecessary. Why can't they listen? Do less? Pace themselves? That way they will have more energy at the end of the day. More energy to spend with you.


I have spent the past 15 years in varying degrees of pain and fatigue. I have spent the past 15 years trying to fathom it, figure it out, the magic ratio between energy expended versus pain and fatigue experienced. I have gone from working 60 hr weeks, to doing nothing at all, and everything else in between. The one thing that has remained constant, is this - It doesn't matter how much or how little I do, eventually my body is going to fail me. Eventually, I am going to crash. Eventually, I am going go down, go under, into the abyss of pain and fatigue. NO MATTER WHAT.

I know that this may be a difficult concept to comprehend. I know that it appears that my health is at it's worst when I "do too much", that my pain levels are at their highest when I "do too much", that I would be better, less tired, in less pain, more able to spend time with my family if I were to take it easier. I know that in a logical world this would be the case. But there isn't anything logical about illness. There isn't anything logical about chronic pain and fatigue. It comes when it comes, and it eases (because it NEVER goes) when it eases. NOTHING I DO OR DON'T DO IS GOING TO CHANGE THAT FACT. I know this, because I have spent the past 15 years living it.

I have spent the past 15 years living at the mercy of a body that hates me. Everything I do is at it's will. When it decides that it has had enough, it shuts down, often with little to no warning. It has taken me 15 years to accept that I have no control over this. That this is my life now.

 Accepting this has been difficult and painful, but now that I have, I feel strangely liberated. For the first time, in 15 years, I feel free, and this freedom has given me back my passion for living. This acceptance has lit a fire in me that I thought was long dead. I have spent so many years worrying about when the next crash is coming, that I haven't enjoyed the moments between the crashes. I spent my time trying to fend the low times off, by being cautious, and trying to conserve my energy, and in doing so I would feel bitter and cheated when the crash arrived because I hadn't done anything to warrant or deserve a crash. I've spent 15 years living in a cycle of fear and bitterness.

NO MORE.

I'm done with fear and I am done with bitterness.

Now that I accept that the crashes will come regardless, I am able to LIVE. I am able to DO, and I am determined to ENJOY.

I know that this sounds crazy and nonsensical, but it is what it is.

You, as my loved ones, my support system, have a choice to make. You can choose to disagree with me. You can choose to disapprove of my choices. You can choose feel angry, and cheated, and robbed of your quality time with me. You can choose to believe that if I were to only slow down, do less, take it easier, that I would be in less pain, less fatigued, and you can choose to be angry with me when I don't heed your advice, and continue to keep going at full pelt. You can choose to feel strangely vindicated when I go under because you will have been proven right. You can choose to feel guilty for feeling vindicated. You can choose to feel neglected and left behind when I choose to not heed your warnings and continue to "do". You can choose to not be supportive of my choices, and be obvious with your lack of support. You can tell yourself that your negativity comes from a place of love. That is your choice. Perhaps that is the process that you need to go through, the same cycle of fear and bitterness that I struggled with for 15 years.

 Or you can choose to take me at my word. Choose to accept that I am the one who lives in this body. I am the one who spends every single second of every single day in various degrees of pain and fatigue no matter what. Accept that I have finally found a way of living with myself and my defective body. Accept that for the first time in 15 years I feel at peace, and that peace has brought me joy, and that joy has brought me a new lease on life.

Accept that I am going to go under, eventually, no matter what I do or don't do. Accept that I am fully aware of when I am doing too much and trust that there is a reason for me doing so. Accept that I am fully aware that with over exertion the crashes may come sooner, and trust that I know when I have pushed myself too far, but I did so because the joy of the exertion was worth the recovery period. Accept that I will come through the dark times, and enjoy the better health days WITH ME. Live them with me. Cheer me on when I try to fly, instead of worrying about when the fall will come. Because the fall WILL COME, whether I am flying or walking, enjoying or worrying. It is coming. Eventually. No matter what.

Accept it.

 I have.

Removing my colon gave me spots

For the past few weeks, my skin has decided that I am teenager again. My forehead looks like a Dot to Dot, my cheeks, chin, and nose are covered in a multitude of spots, pimples, zits and whiteheads. It is taking all the will power I posses not to pick and pop the map of mini volcanoes on my face. It's strange, because I wasn't afflicted with "problem skin" when I WAS a teenager, I was blessed with flawless skin. I was that annoying friend that listened with a sympathetic ear to my friend's pimple woes, but I couldn't empathise, as I was secretly jealous that they had pimples to pop (yes, I am that girl who watches boils being lanced on YouTube).  Fast forward 20 something years, and I can finally empathise, and it's miserable. Even worse, my face is now covered in scars as I have gone into a pimple popping frenzy.

I started to worry about what could be causing it. Could it be a hormone problem? Because that's exactly what I need, another health condition to deal with, on top of  Inflammatory Bowel Disease, Chronic Fatigue, Chronic pain, and a permanent Ileostomy.  I then started to think that I was having sympathetic break outs. My daughter is entering puberty, perhaps our hormones have "synced". What better way to teach her how to get through the hell of "blossoming into a woman" than to go through it with her?

 I won't lie, it's been getting me down.

Then I remembered. The skin is the largest organ and it requires hydration in order to flourish, and because I have an ileostomy, I am prone to dehydration.

One of the main jobs of the Colon / Large intestine, is to extract water from the food that has previously had its nutrients extracted in the small intestine. This water helps to keep the body hydrated. I don't have a Colon, therefore I need to take on more liquids, and I am really bad at this. It's not that I don't like water, because I do, It's just that I forget to drink. Last night, as I was complaining to my better half that I had a headache, I realised that I only had one drink throughout the whole day, and I didn't even finish it. Add in the fact that this September is the warmest one in decades, July and August were equally glorious, and I have spent most of this summer outdoors in as few clothes as decent. The answer to my pock marked skin becomes glaringly obvious.

That being said, I will be mentioning my terrible skin to my GP when I see him next week, just in case there is something more insidious going on. In the mean time, I am setting alarms to remind myself to take on fluids regularly throughout the day, I'm aiming for three litres. I am also taking my daughter on a skin care shopping spree, Simple products for her, Clinique for me. I also intend to use this as an opportunity to teach my children that water is magic juice, to be savoured and appreciated, and that
popping you pimples is as damaging to your skin as it is satisfying to your soul!