Thank you all

[Alliekat65]

I just want to say Thank you for all your advise. its really hard to get straight answers AND today my rheumatologist secretary had me in tears. wanting to change tomorrow appointment after my hubby and I booked time off.. its so stressful with the sight loss the steroids the headaches. kneck aches the grumpy me...the tiredness. the.i can't sleep I'm restless..let alone having to fight people who dont care that ya trying keep thevrest of your life together whilst feeling crap to see a doc..sorry for the ramble..but unless ya know ya don't.. andvi didn't but do

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this…. and day before is really not good enough to cancel appointment -unless there is a emergency of course.

Hope you can get appointment sorted.

[HeronNS]

Sending you a virtual hug. It's tough, but "this too shall pass". 🌺

[Longtimer]

It is tough, keep fighting keep strong we all know how you feel.

[piglette]

I really feel for you. I just get the impression the NHS seems to think we are just sitting around waiting for their command at their whim and we can just come along at any time to an appointment whenever they are generous enough to give us one and if they change the date that is no oroblem to us. It goes to show how much respect (or not) they have for patients.

[Cfmad298601 in reply to piglette]

I get this continuously, don’t get me wrong, on the whole my Rheumy has been pretty good but the process for arranging appointments is dire. I’m still working full time so need to balance things out. But all I get is notification of a booked appointment time, no option to discuss preferred ones. The electronic message only gives options to reply with accept or to reschedule, stating reason as either unwell or on holiday, sometimes life or work commitments just get in the way! often I get appointments stuck in the middle of the day which is not the best timing for me. The only occasion I called them to reschedule, with a good 4 weeks notice, so not last minute by any means, I felt like it was a massive inconvenience to them. I appreciate their time, and their work must be stressful, but we’re not just robots and are under stress a lot too.

[Alliekat65 in reply to Cfmad298601]

Thank you ! I work 12.5 hour shifts on mental health ward and cant have my phone on me..she was a bit .....and pointed out that I didn't answer the call ! we can't all sit at a desk with our phones within reach..

[Sophiestree in reply to piglette]

on the flip side, if you cancel too many they take you off the list entirely! I wasn't too bothered as I was planning on changing but had no idea it was so many strikes and you're out!

[PMRpro Ambassador in reply to Sophiestree]

That is the bit I really object to - doesn't happen in our system. And almost all appointments are what you choose except the first check after a hospital visit - I was handed one at the other hospital cardiology unit 70km away for 10am!!!!! I ordered ambo transport there because of it - would have been free to travel but not easy!

[Sophiestree in reply to PMRpro]

Yes, I had a physio appt once and my car battery was flat so rang and explained I wasn't going to make it in time and they said "on this occasion"..... blah blah blah

[Kendrew]

It's so tough trying to process everything that's happening and why... particularly in the early months after diagnosis.

I see from your bio that you were only diagnosed in March so its still early days for you, and I know how bewildering & overwhelming it can all feel.

It really does get easier and although it won't feel like it right now, you will start to see small improvements and everything will begin to settle down.

In the meantime, just try and trust in the process, learn as much as you can about your condition & medications so you can make choices that are right for you and don't be afraid to question the medical professionals if you disagree with them.

We all know and understand that fear and feeling of helplessness because as Longtimer said, "we've all been there".

I know from my own experience that this forum will advise you, console you, support you, teach you, reassure you, befriend you, and much more besides, so just try and remember that no storm lasts forever and you will get through this.

Sending you a hug, and we're all 'holding your hand'.

[herdysheep in reply to Kendrew]

So thoughtful, Kendrew. You are a treasure

[Jayneywales]

alliekat65. Hug of support. Picking up on one of your comments and giving my halfpenneth worth of advice based on my experience. Diagnosed in June 23 after struggling since Oct 22. Never lost a day off work. Dragged myself to work everyday. Sometimes crying in the car wondering how I was going to get to my desk with my bags. God how I wish I’d given in and taken some time on the sick. This disease robs your energy, your sleep and your patience. If you can afford too - take some time to rest. And I mean rest. We are not programmed to sit still but I’ve learnt a lot in a year of treatment. Give yourself a break. Makes it easier to cope with the cr@p that comes with it. Hugs again and keep smiling.

[SheffieldJane]

so sorry that you are feeling this way at present, it has been a common predicament in recent years, especially the sense that nobody cares. I am hoping the new administration will prioritise the NHS as they have promised to do.

[Gimme]

The universal expectation that we are glued to a mobile phone is one of my personal bitches about modern life. I rarely hear mine. And I am purposefully going to gloss over the crap state of the NHS, and focus on you instead. I know that despair soon after diagnosis very well, though I have PMR not GCA. It is hard coming to terms with a chronic illness and especially in patients who are still young enough to be expected to work full time. You sound pretty overwhelmed, which makes me wonder if you are trying to do too much and someone else mentioned making sure that you get enough rest, which is very important. There is no quick and easy fix for these horrible auto immune illnesses and you have to remember that you are ill and need to be kind to yourself. Unfortunately, both GCA and PMR are life changing. When you have recovered from this particular upset and have time to think, you might have a think about what you can do to make your life easier. For example, could you reduce your hours or even stop work? Or are there other changes to your lifestyle that would give you more rest? I hope that you feel a bit better soon. 💗

[PMRpro Ambassador in reply to Gimme]

Yes - the looks I used to get when I denied having a smartphone was quite amusing! "Send us a photo", "use the app" - occasionally I'm quite happy to play the LOL card ...

[herdysheep in reply to PMRpro]

I have a smart phone but not a signal at home. The surgery insist on having a smart phone number as well as land line and I made them write in to use the landline if not a text. Guess what they ring? It's a minor issue in ways but it's the taking no notice bit that sums it all up.

A neighbour called at the surgery to make an appt. Had given up trying to ring. She was told gp would ring. Gp rang and made appt for next day, by which time neighbour was much more poorly, day lost in treatment etc. Everything seems to be painting by numbers. God help us if AI is learning from current life!!!

[Alliekat65]

yes and in my job this is NOT possible

[Tiggy70]

Sorry to hear you’re going through a rough patch. Things will get better! Sending you a virtual hug 🫂 🌸

[Body_bonkers]

Afraid I know how you feel so sending a virtual hug