Life with a chronic illness is tough. There is stigma associated with anything chronic; people are forever questioning why doesn't someone just get better with 1 treatment, a misunderstanding of the trials and tribulations and the notion of chronic illness has a tendency to gain an overall sense of being 'old news' amongst people indirectly impacted or sideline viewing. This journey has certainly opened my eyes to the many aspects of living with a chronic illness including the good, the bad and the ugly. I knew it would be tough having conditions that are not cureable and don't have a quick fix treatment but I didn't realise the holistic impact it would have on my entire life as I had known it. I didn't realise how it would affect people around me. I didn't realise it would affect me emotionally. I didn't realise how it would affect me psychologically. I didn't realise how much it would affect me physiologically. I didn't realise it would change my views & my ideas on life.
I just didn't realise.
If someone told me what would happen over these next few years in my world I would never have believed it, yet now I am living this reality and it is a constant battle. People I considered good friends and lifelong friends have deserted me, I have a very limited social life and overall it has been & still is, really hard for people to understand what I'm going through. I guess in some way this illness has highlighted some key aspects of my life in which I had misjudged. Only after going through this have I learnt the truth behind so many of my assumptions which has been both revealing and shocking. There have been some really good things come from having this illness but I can assure you there has been double the negatives. But live and let learn right?!
Chronic means that something is persisting or long- lasting. It doesn't go away with simple intervention. It's long, it's gruelling, it's harsh, it's mean and it's isolating. My illnesses are chronic, although along my journey I have also many, many times been acutely unwell. I like to think of the differences between acute and chronic illness as different sporting events.
Appendicitis is a sprint, whilst my situation is a triathlon. If you present to an emergency department with appendicitis it's a pretty well-planned machine that kicks into gear. The start gun sounds at the positive abdo exam & positive bloods. After that it's just the matter of how fast everything happens. As appendicitis can get bad really quickly the sprint is on to surgery then recovery then the final sprint out the front door. The sprint is over before it's started & boom, acute problem handled. Finito!
Having my chronic conditions equates to a really long triathlon! Like 5years long so far. When I wake up and attempt to get ready for the day, it's the bicycle leg - it rolls on, it's a similar routine each day yet there are windy paths depending on which nurses I get & whether my medications control my heart & blood pressure enough to not pass out too much & function. As the day goes on it merges into the swimming leg - it's all about moving. Nothing but moving. Not stopping and just getting on with the days tasks, be it hospital visits, specialist appointments, rehab, or resting and relaxing, just like swimming if you stop you sink...or in my case you loose motivation and become engulfed in the
difficulty & sadness of the situation.The running leg of my triathlon doesn't stop. Ever. Because that's the way life is with chronic illness. It's not something that disappears; rather it has bumps and hills, downward slides, sharp points, curves and flat straights. It is never ending and each time you think you're getting closer to the finish line you remember that you must pace yourself to get there safely. As I said, it's tough.
When you have a flu or common cold or even a nasty infection it is easy to be consumed by your health status. But then those issues pass & focus is placed back onto the daily grind. It's here that I believe the real challenge lies for people living with chronic illness, in that we must try not to let health encapsulate our whole being. Ofcourse I'm aware of how I feel, what's going on with my body & my everyday struggles but I also try to remove myself psychologically from my pyshiological state and just be me. The same old Erika that used to dance all night, drink cocktails, laugh, run & study. Again, it's not easy to remove myself from the features that define me most and have essentially been my entire focus the last few years, but I try to do it because I want to be more then just my illness. I want to be me & I want to feel like I fit into life and I want to choose what defines me as a person.
One of the biggest things I've come to learn over the last few years is that despite a diagnosis or lack of, absolutely everyone has a choice about how they live their lives. Be it choosing to accept or decline cancer treatment, choosing to take/refuse medication or go to work/school or anything trivial like what to wear, what/when to eat, how and every other decision. It took me a while initially to wrap my head around the idea of choice, given my situation. How could I choose anything!? I was the victim in this and was the unfair hand I've been given. Yes that is true. But it's all about how you decide to deal with your cards. On most days I chose to fight and put in the hard yards for any chance at recovery, whilst on few other days I chose to do nothing and are consumed by my emotions. I had a choice over how I handle myself given the crappy predicament. This was empowering and enlightening but also scary. I think that the common denominator between all illnesses is that you can't really choose your health or which illness would be your preference, but you can choose how you want to let it impact on your life & perceptions of the world.
It sucks to be sick. And it sucks that Chronic illnesses do not disspear overnight or by taking a magic nutritional supplement or the newest miracle diet. Truthfully, i believe that only people living with chronic illness or their close family/carers really understand the full impact of poor health. I choose to put make up on my face and smile when I'm out. I choose to paint my nails 24/7 with bright colours to remind me that it's normal. I choose not to cry infront of people. I choose not to speak of the multiple number of pass outs every day. I choose to answer 'I'm fine' even when I'm not. I choose to enjoy fashion. I choose exercise within my constraints. And I choose to not let my chronic illnesses define me. I sometimes loose this battle and my world focuses on my sickness and it's a struggle to think beyond the current situation, but this is no way to live. Life is so much more than our health & worries. It should be a balance of all entities.
In my ideal world no one would be sick or struggling in any way. But the fact stands that people are going to be sick. Most people will be acutely unwell or sick for short periods and recover without a hitch. That is life. At the end of the day though I try to remind myself that I am Me.
Yes I have chronic illness but it does NOT have me!
