Tomorrow I see another consultant. It’s been a couple of months since I’ve seen a different consultant/team from my ‘normal’ ones, so I don’t really know what to expect from this one. I do, however, nearly always feel the same before going to see someone new.
I don’t have a clue how this specialty works.
The problem with having a rare illness is you have to do a lot of reading about it and get clued up, mostly because you’re essentially completing an a-level equivalent in science by just turning up to an appointment. The last time I saw my endocrinologist he said ‘I’m really impressed you’re following this because I tried to explain it to some Junior Doctors and they glazed over way before you did‘. Tomorrow I’m seeing a respiratory/sleep consultant. I’ve seen many respiratory doctors and have had pretty much every respiratory test under the sun, but this one is different, they never involved sleep before, and I don’t know what to expect. My adrenal insufficiency makes it hard for me to keep up in conversations at the best of times, but I feel like I should have prepped more for the appointment, even though there’s literally nothing I need to do except turn up.
I want to feel hopeful but don’t at the same time.
I would love it if he turned around and said ‘aha this is what it is and this is what you need to do‘. However, the likelihood is he will order tests or studies or ask me to trial something. So there probably won’t be any answers tomorrow. But after getting about 4 hours sleep on average a night for the past 3 years, I would love to get a good night’s sleep! So part of me does feel hopeful deep down, even if I know it’s an unrealistic expectation.
Hopefully he won’t call me ‘medically interesting’, ‘an enigma’, ‘not normal’…
People get excited when they read my diagnoses and tests results because my body basically does the exact opposite of what it’s supposed to do. But I wish my body would cooperate and read the textbook properly before appointments so that I don’t have people sitting there telling me they’ve never seen one of me before!
I hope he knows what adrenal insufficiency is.
The last new consultant I saw didn’t have a clue so the first 20 minutes of the appointment was me explaining what it is and her asking questions. Which is really frustrating because the appointment should be about them asking me questions to work out what’s going on rather than me explaining a diagnosis I already have. I get it, they need the info to do their job, but they could read up a bit first.
I hope I can answer the questions I’m asked.
I ‘forget’ that a lot of the things I put up with each day aren’t ‘normal’ until my husband or friend interrupt and say ‘actually, this is what happens…’
I’m worried he’s going to send me away without any help.
This stems back to pre-AI diagnosis where a few medics told me it was ‘all in my head’ and I was having to fight hard to get help. So I always worry that new doctors ‘won’t believe me’ when I describe my symptoms and I’ll have to convince them.
I don’t know what’s relevant to him.
I have a complex medical history. I can’t remember every hospital admission, consultant, medication etc because it’s impossible to. I have no idea what he’s going to want or need to know though. Every time I see a new Doctor, nurse or team, I have to go over my medical history from the start with them- it’s a normal part of accessing healthcare, but it’s really hard to know which bits to include or exclude. I’d be there all day if I told the whole story from the beginning!
It’s an early morning appointment and I really struggle in the mornings, so I’m worried about managing it.
Hospitals involve a lot of walking, noise and having to function. It’s a lot for me to be able to physically manage, never mind the actual appointment itself. I’ll also find it stressful going there, not consciously stressful, but subconsciously enough that it’ll trigger something adrenal. It’ll wipe me out for a while afterwards, more so if the appointment isn’t a positive one.
I do feel positive about the appointment because it should at least help rule some things out at some point, which can sometimes be as helpful as getting diagnosed with something. It also helps that this one doesn’t (or at least I’m not expecting it to!) involve a life-threatening condition, which takes the pressure off ‘finding an answer’ before I keel over. I’ve had some good experiences at this hospital, and, like I said, I have no idea how this speciality works, so I’m going to try going with the flow at the appointment rather than working out everything that could go wrong in advance!