… I had to decide whether to go or not. I had been out of action and without a social life all through my hospital stays and home recovery periods, I wanted to get out there. But I was afraid. Afraid of being unwell whilst away from home, afraid of the staring people would do when I needed to visit the bathrooms multiple times, the awkward way I would sit if I was in pain, the glances towards me when I refused a alcoholic drink. It was alot of pressure and it made me extremely nervous…
This is an extract from a diary I kept from the period surrounding NYE 2011. I was just coming out of my first couple weeks of Humira and felt good enough to attempt going out for NYE in town with some friends. Despite wanting to go and be social once more – admittedly not at all like I used to be; the fatigue was enough to make me tired by 10pm in those days – I was apprehensive. Much to my own shock, I was getting all sorts of nerves about going out. It was a confusing time; as I described quiet well and to the point, it was alot of pressure. It was a completely new experience for me; I was now this sick girl who needed help and needed to be looked out for. I had no idea how to act or react, or how to be myself. I found it tough in those first couple of months after being completely discharged from the hospital, when it came to how to be myself; both with new and old friends, and alone by myself.
For all of us suffering from IBD, anxiety can cause major emotional and thus physical problems. For some it can be travelling long distances and being unable to use a bathroom, for others it can be the stress of a new situation or experience; such as meeting someone in a new place. We all survey the room; looking for the toilets, its as if we need that safety net of bathroom freedom in order to become abit more confident. I know I am like that, for sure. This quirk doesn’t go away when the flare ups subside, it continues as it becomes ingrained into your IBD being. This is not a bad thing. I am always mentally planning my “escape route” the bathrooms if the worst should happen, I desperately need to use a toilet. Planning like this, I find, more often than not means that it does not happen. Having that information stored away in my mind, helps calm me down, mentally calming my bowels down into submission. This can be half the battle. This of course, is not 100% fool proof, how can it be? I can not control my disease from reacting as and when it need to. I just have to get on with it.
I can offer some advice though; being prepared has settled my nerves and lessen my anxietyy in the past year or so. As much as I would love to live a carefree and plan free life, I know I can not. Luckily, I was quite organised and planning-orientated before I was diagnosed, so this isn’t too much of a big lifestyle change, but it has been challenging, nonetheless.
Once my medication issues settled down, and thus my disease became more and more controlled, I began to test the boundaries of my anxiety. I subscribe to many schools of thoughts, one being that of “If it happens, it happens, try and laugh about it” – this is what I try to do, always, to be more and more comfortable and confident with my own being and my disease. This was tough to begin with, but I find it the most beneficial, with hindsight. I would go out and meet people in new places, spent time in different environments and situations, worked longer and harder, did things outside of my comfort zone and started to grow in confident, as a result. I of course, had mishaps and made mistakes, had embarrassing outcomes and sometimes made a fool of myself, but it was always to better myself. Not only that, I became more and more sure of how cope with IBD being in my life. I made more peace with my situation and go on with it. And its been onwards and upwards since then.
Ever so often, despite being so much more confident, I do suffer with bouts of self doubt and low self confidence. Something will change in my routine and my expectations and I tend to lose it, becoming more clumsy and angry. This is something I’m not especially proud of but it happens. In those moments, I take it out on people and things and probably do more harm to my philosophy and it comes around to bite in the ass, but resulting in pain and manifestations of my disease. This was extremely bad and frustrating when I was struggling without medication, but now, it is just proof that I can not control it all. That I need to take a small step back and take better care of myself. It is a constant sphere of becoming well enough to do more, pushing myself, going too hard and needing to reign it in a little. But that, I feel, is just me. I push and pull with my disease in all its physical forms, but mentally and emotionally, I must confess, I feel comfortable.
For anyone seeking comfort.. it does come. It just takes time. This is just my tale. It is not just single faceted, it encompasses and considered much. And when the struggle and fights of hospitalisations and surgeries subside, finding some comfort is just the icing on the cake of making it through.