So I went for my half hour neurology appointment yesterday, which ended up being 2.5hrs long by the time I got out, what can I say, I like to ask questions…
Sitting in the waiting room I was looking round at everyone else waiting not really feeling like I was in “their boat” if that makes sense, my appointment was running late so as time went on and I was sat there, surrounded by people of all varying physical and non physical disabilities, doctors walking past, nurses calling people through, I couldn’t help having one of those “SMASH BANG WALLOP” moments of realising that this is now a part of my life, and always will be. I’m never not going to have to do this am I. I’m so used to going to a doctor, him telling me what’s wrong and how we fix it, and then fixing it and getting better. Yet no one can fix my MS, so this is it. I’m sure moments like this are gonna happen a lot, but it still makes me get a sick feeling in my stomach.
Anyway, probably wasn’t the best timing for my doctor, for me to have such a reflective Bridget Jones momentarily relapse in the waiting room ..as I then walked in the room ready to state my case like it was my opening scene on Judge Judy. My doc asks me if it’s ok if two student nurses can sit in on my appointment, in my mind I’m thinking, god help them, they are gonna regret this when they have to write it up!
To cut a very long appointment short, that involved me debating, listening, debating a bit more, a few tears and then a bit more debating I can summarise it as, my doc thinks I may have had MS for over 8 years and I also didn’t get my own way. Now getting your own way isn’t always the right way is it (reluctantly admitting that), and I’m in a position where the treatment I have been on is the strongest I’m allowed at the stage due to the risks involved in the even stronger ones…so the only option I have is to go for a weaker treatment. As you can imagine I made a case good enough to justify Beyoncé becoming President, but rules are rules and even though I still stand by my approach of “hit it hard or go home”, I’m faced with a system that seems to be more reactive than proactive. Don’t get me wrong, my neurologist is a nice guy, a very very clever guy and I think he knew where I was coming from but he can’t give me the treatment I want as it’s too risky at this stage. I respect him for even entertaining my argument if I’m honest, but I can’t help but feel as though I’m not doing the best I can to fight this disease, my way. The approach I’ve got to follow, just doesn’t fit with how I would approach anything else in my life. That’s not necessarily a good or bad thing, but it’s a thing I’ve got to accept, for now.
By the time we had finished the appointment, the two student nurses didn’t know which way to look….but I think they actually enjoyed it! It was like a tennis match at one point between me and my doc… I asked him if he has ever had a patient like me before…no surprise he answered “No” ( a bit more firmly than I would have liked, calm down there doc).
So after my app my doc takes me to see my MS nurse, he went in before me as I got lost following him (he is a bloody fast walker and soggy ballet pumps are not a good idea on highly polished hospital floors). I don’t know what he said to my nurse but I reckon it was something like “she is on one, good luck” …just kidding. Anyway I’m starting to build up a good relationship with my nurse, I think this is really important for anyone with MS, as your nurse is your first point of support for everything, she already knows my outlook on my treatment and we had a good chat and I’m finding I can be even more honest with her know, I asked her as well if anyone else was like me…she laughed and said “No Rachel, you are definitely unique”…. there’s a theme here isn’t there, I’m gonna get a complex ha!
So, my head was a bit battered, I didn’t get what I wanted, I was trying to understand the reasoning from my doc and coming to terms with the fact that I may have had MS for a lot longer than I thought. Which only angers me that it’s gone untreated for so long and leaves me wondering if my recent bout of attacks means its progressing, or getting worse. I can’t focus on that though can I, I can’t change it, I’ve just got to now make a decision on what treatment I opt for next. There’s a part of me that wants to try staying on these strong ones again in the hope I react differently (they inflame my stomach lining so give me vomiting and really bad cramps and the worst hot flushes in the world – think menopausal flamingo again)….or do I opt for the weaker strength drugs that I have to inject every day. I still don’t know what to do.
Anyway, if you take anything from this long waffley blog, please let it be that becoming your expert on “you” when it comes to your health is so important. Research, ask questions, make sure your neurologist and medical team know what you want (even if you don’t get it), ask more questions and even more, and like me, try and be as honest as you can be with them, try and have the confidence to be assertive, dont let the “doctor” thing scare you. I think I said a few times yesterday “this isn’t a personal attack on you doc, just the system”…
So, no happy bittersweet ending for me at the min, a lot of thinking and reading to do, to determine if not getting my own way was a good or a bad thing.
Anyway, have a lovely weekend, I’m sure I read somewhere in my research that Gin was good for helping you make decisions, I’ll try it out and let you all know…
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