This has been a rough one for me, more so than before.
I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after a five hour shift that mostly consisted of me sneezing, coughing and generally loosing all sense of body strength and temperature control – and could not see any light at the end of the tunnel. Which is a) stupid because there is always light, and b) how terribly self centred of me.
But, I can understand my self-centred feelings, and I still feel them some what. I’m due my Inflixmab infusion on Monday morning, the day before Christmas Eve, and I need to get well enough to have it. The funny thing with biologicals is that they destroy your immune system; take it back to state where it can fight off the most basic and simplistic inflammation – that of my digestive system, something anyone with a full functioning, healthy body can do – but that in turn leaves your body susceptible to every viral and bacterial infection in your presence. This is dangerous, but my medication is a necessary evil that is working very well to control my disease, so you win some, you loose some. It seems I have picked up something in the last 10-14 days and its take a hold on my sucky immune system.
So, I followed my IBD nurse’s advice; get checked out my GP and see if it was bacterial or viral. They did, chest was fine, no fever, no temperature, glands were clear and I only needed a week of broad spectrum antibiotics to help my immune system fight it off. I was very clear that I wanted all the help I could get to get rid of this before my infusion. The hospital told me as long as I had my bloods taken on Friday, as normal, they would wait for me to come in on Monday morning to assess whether I could or could not have it. If my CRP and blood count were within the parameters and I was well enough in myself, I could have it administered. If not it would be postponed until I was well enough in the New Year.
I took myself off work for a couple days. Tried to kick the cold’s sorry butt and went back on Friday knowing I was low on hours and thus pay, unable to claim any sick pay, I dragged myself into work, knowing I might be sent home. I wasn’t, I endured my shift, was taken to the hospital for bloods and then taken home to a bath and my bed. I awoke this morning full of it all in my nose and throat, spent almost all day trying to get it all out of me and keeping my fluids up. On my penultimate day of Fluxocillin tomorrow and hopefully, onto the hospital Monday for my infusion. Taking the necessary days off to get better has probably been for the best, but again, it will all be decided on Monday.
My point here? This week has sucked. I haven’t known myself to be this sick in a while and it not be Crohn’s related. This is medicated related and probably caused by the strength of my second infusion. This is good and bad news: it means that I have responded well to biological treatment, but also means I am having a hard time fighting this cold off because my infusions have lower my system so much, it takes me twice as long to get over this. However, I am a fighter. If this week hasn’t shown it, this whole year has. Change has been the enemy in 2012 and uncertainty certainty played its part too, but I’m coming into 2014 with a new medication in my corner fighting this Crohn’s battle with me. I’ve survived through all this shit, I can take a few more hits.
Hell, every fight makes me wiser and stronger. I might not see it in the beginning, but I know that to be true. It always has been and always will be. That thought – the one I pull out when times are bad and I need reminding of what I can be – keeps me going.
NB. My nurse asked me on Tuesday afternoon when I updated her whether or not I was better. I thought she meant in my cold, and of course I wasn’t, but she meant in my treatment. There was some serious doubt my body would or could respond to a second round of biological treatment. I know that this is the only sort of medication that helps me control my symptoms, and all the side effects and problems are necessary evils to help me regain control over my disease. I have made my peace with that. Obviously, they had concerns too, but luckily, I have felt brilliant on this. I hope I continue to because I have alot of things I wanna go and do now that I’ve gotten the devilish Crohn’s settled down.
The risks associated with biological treatments are real. And they are a reality to some. But, they – Healthcare Professionals – recommend these treatments within the guidelines set out for them, for a reason. Having a cold – having a week like I’ve had – could quite easily happen at any time, from anyone, for any length of time. It is all about knowing the right path of communication in order to get help when you need it the most. There is no point of ignoring it until its too big to control. That is why they do not let you have treatment or leave from having treatment without thoroughly checking you and making sure you are okay. Your health and well-being are important to them, they do not want you to get sick again. You most certainly don’t want that either, be safe. Be cautious, you are not a hypochondriac. You know your own body, nobody else does. You need to fight for you, or have someone who will fight for you, when it is needed most.