Lived Experience Forum

[Jynx]

Why is it never easy hey @Bow 😅 All booked out for a year, yikes!

[MermaidHair]

Hey @D1ng0 you are definitely not alone here, I seem to suffer from a special kind of mind blank when it come to doctors and specialist appointments. I remember one time coming out from a psychologists appointment not having talked about any of the things I had planned or wanted to address. Another time I completely forgot to tell my doctor about a major change in my condition and ended up talking about other health related things, it can be so overwhelming and confusing!

I second the note taking advice by @Jynx, now I always have little dot points of the most important things to remember and discuss. 

Questions can be tricky though because sometimes they can be unexpected or catch you off guard, just try answer things the best you can. Most professionals will be understanding that you've got a lot going on and it can be hard to articulate and relay things at times, it definitely doesn't have to be perfect. As they all get to know you things should get easier too.

I wish you the best of luck with everything 😊 

[HeartSpace]

Hi Dingo,
At one point I had office experience, some have technology (IT). But I use a manual two days to a page diary to write in and sit in on a bench handy to check regularly when need. I book my appointments in advance from one appointment to another at have the diary with me to fit in your daily schedule etc. I am old school and like a text reminder to say Y/N and mainly prefer professional with good telephone support to make it quick and easy. I note a few commented on not like talking on the phone that online bookings are easier. That would depend on a reliable device if that suits. I find I can get frustrated with online at times or solo time, so been older I do like a prompt phone call and if I have any questions they can be answered and it save back and forwards communication of dates and times for appointments. Past few years have been more challenging with doctors booked out and heavy depend with some many been unwell at local GP, the vital support to keep regular contact with. Yes as other have mentioned some dot points, the main things to discuss, that has helped me more in counselling sessions with I was going through a scattered stage of too many things at once. I have read and some have a medical journal? just a thought. At times I wish I did list medication changes etc over time. Take care 🙂

[D1ng0]

Hey @MermaidHair, thank you for sharing with me, it's great to feel that empathy and know that I'm not alone. Reading about your experiences also makes me realise that I would never judge anyone else for forgetting things during appointments, yet I give myself such a hard time... Probably should work on that double standard and give myself a break... 😅

Thank you for the advice about handling questions, they definitely have caught me off-guard many times. I'm especially coming up against this because I'm still understanding my Bulimia and chronic pain (the ED was only diagnosed on the 19th!) and there's a lot I just don't know. I'm new to managing multiple complex conditions and am still learning how they overlap and affect each other, so I definitely appreciate insights from people who have experience managing their own mental illnesses.

Thank you again 😊 Best wishes to you as well

[D1ng0]

Good morning @HeartSpace, cheers for sharing your own experiences and coping strategies around managing your healthcare, it's really reassuring to know that others have felt similar frustrations and have found ways to manage. I like hearing that folks here have a range of ways to approach organisation and appointment management, because that gets rid of my feelings of hopelessness when one tactic doesn't work for me. I definitely agree about a GP being vital support, I'm so thankful for the GP I have, they're amazing and the reception at my GP's clinic is thankfully very responsive! Which is such a relief.

Wishing you well 😊 

[D1ng0]

Good morning @HeartSpace @MermaidHair @Jynx @tyme @Bow, thank you again for sharing info with me. In my most recent dietician and physiotherapist appointments, I was more able to organise questions/priorities, and I felt like I got more out of the conversations. And I'm far less anxious about my next psychologist appointment because I've already decided what I want to discuss, plus I've written a list of updates so that, when I have a blank moment, there's a reminder of what I can talk about! And it's thanks to you folks for making me believe that I can handle appointments, so cheers.

Preparing for appointments and coordinating my healthcare still feels like it takes up most of my time, due to fatigue/pain/depression/et cetera... but I think I might need to make peace with that until I'm further along in my journey, when I'll hopefully have more energy 😅

I'm curious, if you feel like sharing... have you ever felt that organising support for your mental and/or physical conditions seems like a full-time job? Between that and holding down an actual job, I feel like I've got nothing left in the tank. I'm pretty lonely and isolated but, to be honest, I don't think I'm capable of socialising any more than I currently do. At least not right now. It'd be nice to know I'm not alone in feeling that way.

Anyway, hope you're all doing well! Thank you again. This forum makes me feel calmer, even when things are bad.

[tyme]

We are so glad to have you @D1ng0 ,

I'm glad things are moving a little in terms of your supports, but yes, I agree, it takes up time. 

For me, I used to have to take a day off work every week just to attend 3 hour therapy. It was worth it at the end. I may not be here otherwise...

So maybe, just say that these appointments are 'for a time'? (if they are)

[D1ng0]

Thanks @tyme, hearing that you've come that far is really reassuring to me. Gives me hope that I'll be in a much better state eventually, even though it feels so insurmountable, a lot of the time. (I keep swinging between being calm/hopeful and being extremely depressed, it's a bit dizzying.)

Therapy really takes it out of me too, work feels impossible afterwards 😅