Inundated with friends, flowers & steroids.
There are many things which can be learnt from a stint in hospital. I have been lucky enough to share a room with two lovely ladies, both around 70, who have Crohns, amongst other things. Pat in particular has the cheeriest demeanour and the pair of them have been teaching me a thing or two about daytime tv, Catchphrase, Touched by an Angel, Pointless. I'm a pro.
A couple of days ago I found out I wasn't responding to the steroids as well as hoped (despite initial success), thus the onslaught of testing and discussions of addition medications to pair with the steroids begins. In this instance, it's a case of picking your preferred side effects: nausea or tremors, hair loss or vertigo.. the choice, is yours, Think Mystic Meg, but without the big fun purple ball.
1) The power of drugs
Steroids can make you a bit wild. Granted, you probably all knew this before I did, given the cavalier, no holds barred blog post I wrote having just arrived in hospital, but steroids can really play with your emotions. For example on Thursday and Saturday, I felt so strong, open minded and able to take everything in my stride. Friday and Sunday however, I seemed unable to maintain an even keel, getting teary at a minutes notice and feeling incredibly fed up. I even managed to go from hysterical laughter to bawling without even blinking. Apparently this is another fun side effect. At least I have an excuse! Today is a bit of a 'why me' sort of day. Tomorrow will be better I'm sure.
2) You realise who's on your team.
Over the past week I have realised just how incredibly lucky and blessed I am to have the friends and family I do. No way no how could I be so strong through this without the support of them all. No visiting time has been empty, in fact scheduling them became quite a source of entertainment! When you find yourself all of a sudden in a sticky situation, the good eggs really come out of the woodwork. From the hilarious cards, inspiring books to the no holds barred poo chat and hugs that said more 1000 words, giving me the strength to get through another day, those friends (you know who you are) made the world of difference. And my family, I won't even start 💛
3) Leave your food expectations at the door
Now, I hadn't resided on a hospital ward since the youthful age of 4 when I dislocated my hip sledging and was hauled up in a bed in the Sick Kids listening to Enya & Oasis. I couldn't tell you what hospital food was like then but I can't imagine it has improved much since. For patients on a gastrointestinal ward, I was baffled by the food on offer. What was definitely just a hospital wide menu consisted of delights such as beef olives, chicken curry, apple strudel & semolina.... I mean, if that's not going to help your gut I don't know what will! Thankfully my parents were on hand with Marks & Spencer's quinoa, lentil & vegetable salads. But never underestimate the power of a stressed nurse waking you at 6.30 for meds and breakfast. You're really in their hands there. So be prepared!
4) Don't leave it late: get checked out!
Believe me, had I not let this rumble on for the best part of 18 months, the dramatic hospital trip could have been avoided for sure. Badger your doctor until you get seen. I really don't think I would have been rigged up on a IV for a week had I not been waiting for over a year. Contrary to everything I've said, it's not actually that fun. Coming to terms that you are now living with an (as yet) incurable disease is hard. With trial & error, and careful medication management you can move into remission but it's unlikely you'll last more than a few years before being back in this situation, one I wouldn't wish on my worst enemy. But it will happen and with perseverance, raising awareness and fundraising (I hope you're ready, I've another 10k in my midst), we might just kick it!
5) Mindset is everything
Believe me when I say this, but your mindset is everything in this game. You have to make the decision early on that this chronic, incurable illness will not get the better of you. You are stronger than that. Life happened before, and a hell of a lot more life will happen after. It's just an additional challenge, and what's life without a little of that! What I'm learning in the early stages of medication adjustment is that there are days when you can't get out of bed for exhaustion and sleep is all your body craves. This can feel grim, particularly given how energised and focused I usually am, but let those happen, and don't beat yourself up about it. They will end. Amazing, those will be followed by a day full of energy where you can eat more substantially and and even make a trip out to do some shopping. So revel in the good days, knowing that they will come just after some of the darkest. It can't beat you, it won't beat you, it's a speedbump and god knows we can take those one of two ways, slow and cautiously, or with a bit of gusto and fun. I intend to try and make it through using the latter.