Infliximab #6 and more…
Updates galore tonight – I’ve been extremely busy and to some extend, ignoring my problems a little.
The build up to the latest Infliximab infusion was interesting; ten days before I started experiencing extreme fatigue in my leg and arm muscles. This would get a little worse each day, until four days before when I was unable to raise my arms higher than my shoulders. I consulted with my GP to see if this was an inflammatory response from an infection I had (possibly) or were my joints being attacked because the Infliximab was all but gone? After a round of blood tests that were added to my usual pre-Infliximab vials, I was still none the wiser. I packed for my holiday, took myself off to the hospital and waiting for my infusion. Being there, instantly, I calmed down. I am coming to the strong realisation that anxiety and stress play a bigger part in my disease than I once thought.
The IV started and within the hour of my medication going in, my joints eased, my muscles felt more controlled and I was so glad to be getting something to help, and not just for a little while to take away the pain, but Infliximab is consist and it had helped me really control the Crohn’s and start taking back some of what I lost last year being medication free. For me, the Infliximab now makes me invisible, but in the sense that it had made me “normal” and I no longer feel as if I’m constantly the sick person people know. It’s a welcomed and happy change.
So, after my infusion, the boyfriend (Ben) and I took a couple of days holiday in Cornwall, in preparation for us both changing jobs last week. It was such a nice change of pace and good positive memories to help me through the tough times that were bound to come. I wasn’t far off; the last week or so has been stressful, tiring and very demanding; not just physically like I am used to but mentally too. Being the new person in the building is an odd feeling and it unsettles my stomach and makes me antsy. It also makes my belly go mad when I am thrown a curve ball. In this new role, it’s not so much demanding as it is busy and that has been difficult to deal with; it is something that is foreign to me, not impossible but it’s alot of learning. I miss my old job some times, but I know that I must think of this as a new beginning for me. And my cranky, unpredictable guts must get along with this.
That being said, today they did not want to play ball. I was having a lovely journey into work only to make my change half way to find myself in desperate need of a bathroom. A PUBLIC BATHROOM VERY EARLY IN THE MORNING, difficult task! I found that there was blood coming from my bum and I panicked. It’s happened before but not like this; so early and whilst on my way to work, I couldn’t handle it and called my IBD nurse who wanted me at the hospital to check it out – “best to make sure isn’t it Louise?” – so shakily I took myself off to there, trying all the while to keep it together. Turned out to be nothing too serious and after some tests, some reassurance and a promise to stop making myself so wound up, I returned home. I took some Tramadol to ease the pain, had a long salt bath but stupidly didn’t eat anything, so have subsequently spent the rest of today, either completely besotted with getting things done or without a clue what I am doing!
My thought here is how easy things can change with Crohn’s and how new I am at work. I am having to learn to trust new people with my medical history and medical present, and their ability to accept that it is by no way my fault what my health does to me. TRUST ME, I HAVE NO CONTROL OVER WHEN MY FLARE UPS OR PROBLEMS CHOOSE TO ATTACK ME, OR WHERE FOR THAT MATTER.
And because everything is all so very new to me again, learning to be honest is difficult too. It makes me nervous and self-conscious when I have to think and think and think about what to say and when to say it. Considering what words to use, when to best use them and to read people’s faces to know if I’m getting the response and reaction I wanted / needed. It’s all making me stressed out and I only wanted to be stressed out from not being good enough at my job yet – crazy expectations of myself, nothing new there. It’s just.. not something I calculated into my “plan”. And that leaves me a little disappointed. Makes me a little angry. Makes me a little sad. And it makes me doubt myself and what I want to do and how will I be able to do that if this is going to happen?
WHAT HAPPENED TO ME BEING IN CONTROL OF MY DISEASE?
I’m sure by tomorrow morning when I need to get up and dressed for work, I will feel better, but I still feel mortified. And I hate that my Crohn’s can do that to me. That when I professed to feel no shame or not be embarrassed, it wasn’t true at all. Disappointing.
