To all my amazing readers,
This blog post is slightly different as I have covered it on a video but thought I would also type bits out as sometimes it is much easier to read than watch a video – so you get the best of both worlds.
My specialist appointment – comes about once or twice a year (ish).
Half an hour once a year.
But it’s so much more than that. You have to squeeze that much of your life into half an hour – close to impossible really.
The nerves before this appointment were about as high as for an interview. I go into this in the video – the anxiety of your consultant listening to you, what your body will be like on the day of your appointment, what they’re going to say and if you remember to say everything you need to.
It’s mentally exhausting. Draining. It’s like a lot of people say, having a chronic illness and taking care of your health is like having a full-time job.
I was lucky that I had a week between my placement finishing and my appointment, so I had time to get all my stuff together properly and discuss it with family before I went.
The oral methotrexate wasn’t for me – I am lucky that my consultant picked up on that straight away and didn’t try to push it on me for longer. A short-lived methotrexate journey for me (September – March). But with the side-effects felt so much longer. I was constantly nauseous, even after increasing my folic acid. My appetite had dropped, I lost so much weight I didn’t really have to lose. My fatigue was exacerbated so my muscle mass dropped. I felt like there was nothing on me and I was that exhausted and nauseous I didn’t even care.
My consultant reassured me that because I’m not in a constant flare, it's more intermittent, then something like Hydroxychloroquine would be better suited for me. So, follow my journey for how this medication goes!
In the time changing medications, I am still on sulfasalazine and the methotrexate will take a good few weeks/months to fully get out of my system. So, I am HOPING for no flare-ups, but we’ll see.
I guess it’s good timing really as hopefully, the new meds will start working by the time I start a job, so I am feeling positive about it. I also need to keep reminding myself that I should probably take it even easier. Also good timing with lambing time finishing and fewer jobs (for me) to do on the farm!!
For anyone that is on or has been on hydroxychloroquine, please don’t hesitate to message me to have a chat if you want to 😊
The main point in my video is that across this amazing community of chronic illness sufferers, not everyone is satisfied with their experiences with healthcare professionals.
THIS NEEDS TO CHANGE.
As a newly qualified physio, I am not happy with knowing this and not doing anything about it.
I have created a little survey for any chronic illness sufferers on their experiences with physiotherapy and my aim is to help anyone and everyone I can. For anyone that hasn’t done it yet, the link is https://www.surveymonkey.co.uk/r/CTYCZJ8).
No one should feel ignored, no one should feel like their healthcare professional is not listening to them. Something needs to change. We need to speak up to get our voices heard. Let me help you.
I hope that if you have the time, that you are able to watch my video and we can start making a change.
As I discussed in my video, my appointment went really positively and for that, I count myself lucky. I know that there are a lot of people who do not get the chance to have this with their healthcare professional. I look forward to what I can do and I really hope everyone else does too.
Thank you for reading, it means the world for every comment and share,