A year in the making.
Last year, my September was tough. It was a positive consequence of my August and the decisions myself and my IBD team made to get me well again.
A quick recap –
I wrote these – The Return of… Everything , “It is okay to be angry at your situation sometimes” and Vedolziumab: Here We Go Again – Third Time is a Charm – because I felt everything. Literally everything. I went from being so sick I did not care to have a 180 turn and wanting to save myself by risking Vedolizumab again.
And here I am, a year later, nine infusions into my third cycle of Veodlizumab and I am struck with gratitude.
To be honest, I feel gratitude at every appointment for my medication that I attend. I don’t mind about the waiting around, I don’t care about the multiple pokes it takes to cannulate me, I don’t even mind the stuffy rooms. I just know what I need this medication to keep me on an even keel and I will ‘suffer’ these small aggregations for the greater benefit of medication that works running around my body, fighting that bastard Crohn’s disease.
Why so grateful for a chronic illness though? – them
Let me take you back to 2017. I had moved away from home for a new job; I relocated myself, my IBD care and my emotions into a new place and whilst it all went well at first, I ended up getting sick. Sicker than I anticipated and I had to find every scrap on energy to fight for what I believed to be happening to me to be fixed. I felt so alone. I felt betrayed and I felt like I was expected to just cope, and I couldn’t. I just could not cope with anything. I had no experience of this living alone lark, of being so far away from my family and my partner – and I realised, very quickly, I was dependent on them. I had no-one here, not like that.
So, I fought as much as I could here, but ultimately, I went back to my old hospital, got admitted and we battled through. It was tough – I felt like a failure, I felt guilty and I felt low. I considered giving it all up and just starting again. Moving away was harder than I ever thought and it was only amplified by the lack of care I couldn’t advocate for.
And whilst all the negatives were amplified, the positives weren’t. But there were plenty to feel positive about.
I had family who would visit every evening.
I would have wonderful chats with new doctors and nurses; and remember the familiar faces.
I would be told I am brave as I endured symptoms even I was surprised with.
I would come through it all, wiser and stronger.
I would find meaning in those sleepless nights. I would notice things and experience things you only see if you have gone through hospital admissions when you are looking well on the outside but are in agony inside. I would really come to understand that kindness is needed much more than ignorance.
My biggest positive was just how many people were advocating for me when I was unable to. My IBD nurses rallied and got my new CCG to approve my Vedolizumab restart. My surgeon would be rounding on me with his new junior doctors and I had the best time advising them on how to listen and response to chronically ill patients. I learnt alot but I also got to teach which is just wonderful.
I felt at ease when I left after that admission. I had fight back in me. That restart has really resorted me. It had set me up for the battle I had ahead of me.
So, when I set foot into the hospital for my infusions, and I see all the other people there; I really appreciate being there. I am well looked after – not that it takes much to keep me happy; just some water, a good cannulation and my medication put up and taken down – and I use my hour there to reflect.
I come for one hour out of my day, every eight weeks.
I get my pre-infusion bloods taken 2 weeks before hand, that’s a 20 minute window of time.
I am allowed to self manage and monitor my own condition because I have been handed over to my current IBD team as a “self advocate who is aware of the complications and symptoms of her own IBD progression and is wise with her ability to seek medication attention when appropriate” – that is a lovely direct quote!
How do you relax there though? – them
I’ve got this down to a science after almost 6 years with infusions as my main source of IBD medication. Remember, this is what works for me, most of the times, but it’s also about you. These are not rules but more like guidelines to help you see that hospital’s are nothing to be scared about.
- Get there early – There is nothing worse than rushing! I book an hour prior to my appointment out from work, so I can get there early, relaxed and ready whenever they are. I am usually the last or penultimate appointment of the day, so it’s not always on time but I know they have been doing a twelve hour shift, so I just wait patiently; sipping on my coffee.
- Be prepared to be a while. The AMU – Ambulatory Medical Unit – where my infusions now take place is busy. And it’s not just about IBD infusions, it’s also Rhematology, chemotherapy and lots of other things beyond just little old me and my IBD. Nothing runs to a schedule, so be prepared to wait. Whilst before, I was in an infusion clinic with my IBD infusion nurse, she would be working all of her patients that day alone; that can’t have been easy. This way, I might not see the same person, but I am checked on and never just left at the side; I am care for.
- Always have snacks – I make time for a coffee before hand. Without a doubt, it keeps me alert enough to make it through. I also have something in my bag too; either from work like some fruit or a snack I’ve not finished that day.
- Take music; it’ll makes the time go faster. God bless wireless headphones! I love my AirPods and they free me from the tether of my phone whilst I’m infusing. Plus, I can be any other place but in that hospital when I’m jamming out to my pick of music that day.
- Be yourself. I take the time to talk to my nurses, even if it’s just pleasantries. I also get up and go to the loo when I need to, despite being nervous to do so. I also now recline the infusion chairs so I am comfortable; life is too short to sit with a needle in your arm and not be comfortable. I also tend to let my ostomy bag hang out too if I am reclined. Also, that can make a good conversation started and it is amazing how many nurses have never seen out but are curious! Just be you.
- Learn the tricks of your infusion pump. After a very large amount of cannulas, you learn how to silence it when it gets an air bubble and how to move it so you can get up and walk around. Whilst I know I must be attached to my pump whilst it’s working, its sometimes very boring, so I get up and walk around. I did this whilst recovering from surgeries – which was probably required – but also at every other single admission when I felt well enough to. It seems my hospital encourage patients to be active whilst admitted, if they physically can be. Also, nothing worse that waiting for someone to turn the pump sound off, when it is right there in front of you. The only thing I won’t do, is stop the pump when the infusion is finished.
Being comfortable is a very subjective, sometimes personal and private thing.
I’ve spent more of time in hospital that I would like, but sometimes its just needed. It is never for a short while, it always seems to be longer than anticipated. And I always go in thinking it’ll be a week or so before discharge, so being comfortable is my priority. Happy patient, happy life?!
And whilst nowadays my time spent there can sometimes give me some triggers and some mild PTSD, I still feel grateful. My medication keeps my disease in control and if I can do my best to manage it whilst I’m away from the confines of the hospital and my medical team; that’s a win win right there. Also, where would I be without the NHS huh? I would be struggling, I can tell you that. It doesn’t bear thinking about, I definitely would be.
If you are in hospital for outpatient care, how do you get comfortable?