Humpty Dumpty

"When life gives you lemons - make lemonade".

Personally, I prefer lemon water simply because I tried sugarcoating things for far too long, and I don't think that extra swirl of icing sugar is going to make the cupcake taste any nicer.

Back in July, my health reached the critical point where we had to stop being forever optimistic I'd manage to get myself back on track without any additional intervention. 

I wasn't just stuck in a downward spiral anymore, but actually had reached rock bottom. My doctor was seeing those worrying numbers and I was feeling them. 

There are different phases and stages you go through in chronic illness. Crisis, isolation, anger, reconstruction, intermittent depression and renewal. Everyone dealing with a long-lasting illness goes through these phases at one point or another. But don’t imagine it being like climbing up ladders and ticking off the boxes while trying to reach the top. Yes, you are going to move forward, but you are also going to take big steps back. Maybe even fall off the ladders completely, just to work yourself through a stage again, you thought you had already completed. 

Post PEG tube placement 

My last hospital admission was traumatising. Physically, mentally and everywhere in between. 

I doubted my ability of winning this fight on quite a few occasions, but not once did I feel like giving up. The stones that were coming after me, would have knocked me off the narrow wall without a great lot of effort. I just had to be strong, which is rather ironic with a body as fragile as an eggshell. 

Surprisingly I managed not to crack under the strain and pressure but in a way, I still stumbled off the wall. 

I knew it was going to take some time for me to adapt and to overcome the fear of trusting, not just the people around me but myself and my body. 

My trip to Greece with my best friends, shortly after being discharged wasn't what you wouldn't consider as "medically recommended" - But quite frankly life isn't if you ask me. It's not safe no matter how careful you are. There are so many factors that contribute to health and sickness. Obviously, you don't have to push your luck, but I do believe you have to take certain risks. And to be honest "I'd rather have a body full of scars and a head full of memories, than a head full of regrets and perfect skin." 

 

Far away from my caregivers and “safe place”, adrenalin kicked in and there was this extra battery I secretly hoped for, allowing me to do a lot more than what I expected my body was capable of.

This holiday was what I needed to get recovery rolling and was more than just a reminder that despite all the difficulties I may face in between, I am surrounded by a functioning support system. 

I was able to put things back into perspective and I've realised that going from crisis to renewal is so much easier when you have a bridge to walk over and a rock to hold on to. 

Downwards and Onwards

My lung function has been permanently low but fairly stable the last one and a half years. I’ve had my downs in-between but up to now, we’ve always seen my numbers bounce up again after a couple of weeks. Though most drastic drops have led to me stabilising at a slightly lower baseline and so we have been seeing a “controlled” downward trend in the amount of air I can get in and out of my lungs.

I didn’t expect my lung function to drop, like the pound exchange rate, after announcing the Brexit.

Back in January, we thought my lungs just fancied marching to a different tune - so we let them and agreed on subtly sweeping those numbers under the mat, optimistic I’d be back on the right track in no time.

A month later my lungs presented even smaller and weaker. With another decrease in forced expiratory volume and increase of residual volume, so the amount of air that is trapped in my lungs, making taking deep breaths quite difficult and telling my stomach it's full when it actually isn't. 

This time I wasn't particularly surprised getting those results in black and white, as I had been noticing a decline in my physical endurance the past weeks.

However, we remained confident switching up a few meds and adding a bit of PEP (Positive Expiratory Pressure) training to my daily routine would sort things out again.

Which leads us to today. To another drop. To having my respiratory consultant apologising to me for not knowing what to do, telling me he is sorry that the treatment I'm receiving hasn't been that big breakthrough we were hoping for. And expressing his concern regarding the future if my lungs don’t start stabilising and improving pretty soon.

I know there's no point in beating around the bush and I shouldn't cling onto numbers. But it is fact that there doesn't seem to be a suitable drug available at the moment, to break the cycle I'm stuck in. 
Which makes me wonder if hamsters ever get frustrated that they don’t move forward despite running.

I’m not discouraged, I’m just taking some time to clear my mind. Often I won't admit it, but I do have moments where it just hits me and today I had one of those.

I know no one expects me to run towards the things that are important to me, yet I have to remind myself every now and again, that I’ll get there, even if takes longer than I want it to.