I am now one year on from my 'visit' to hospital following a few nights of uncontrolled shivering and sweats, and excruciating headaches; CRP was at 180, and escalated for a further week. Noone too sure what it was but NHS looked after me brilliantly. On discharge with a diagnosis of GCA, 60mg/day for a month and off work for the first time in 40 years, I was not sure where this was heading. Slow return to work over the months with amazing support from local surgery and workplace. However, I remained in 'denial' about what the issue was and what it's implications were. The steroids propped me up, so when I was down to 40mg/day, I didn't do so well balancing recuperation and getting on with things! It took till September to settle at 20mg/day. Headaches returned in December, and CRP & ESR started to rise so I was again off work and temporarily back to 40mg/day, but with stricter instructions to rest: I didn't need telling twice for I was beginning to work out this isn't getting better after just a few tablets and back to normal.
I first met PMRGCAuk in December and have since read (slowly) Kate Glibert's book - thank you Kate. And thank you PMRGCAuk. An amazing resource and I am looking at last at a rather different future with a more positive outlook than I had just a few weeks ago. But this will mean change in what work I shall do and making some life adjustments. Now I am planning to get physically and mentally robust again so that I can do all those things we take for granted, but also to accept and manage this wretched thing.
Thank you PMRGCAuk for the opportunity to work out where this is taking me.
Written by
MarkWin
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Hi DorsetLady. I have now read your story, and thank you for this, and others I am hearing, are just the sort of encouragement I have received recently that gets me thinking about how lucky I have been so far. This was a real 'warning shot' across the bows, and because I still have all my faculties (apart from the bleary vision...) I am really looking forward to doing something more than just 'going to work'. I shall still have to work, but realise it cannot be fulltime and that somehow I have to find time to do more about the interests and passions in life.
There does still seem to be a very long way to go and the path does not always seem to lead where I thought it might. But that is opportunity for you!
Many of us get warning shots, and not only with GCA. My late hubby had his with his first heart attack over 20 years, slightly more frightening, but whatever it does make you evaluate life.
As you say, all work is not a happy medium. And whilst some plans are scuppered it does lead to other avenues and you do realise that maybe you don’t have as good an income, but there are a lot of things in life that are free, or cost very little! Get out there and enjoy them...and be glad you can. Even if it means living in the slow lane for a while.
Good luck.
Hi just seen your reply to PMRpro, the Salisbury group meet up at Wilton Shopping Centre in Cafe above carpet factory every 2 months, very informal, sure everyone would like to meet you. Think next one is this month, unfortunately(!) I shan’t make it, still in NZ.
Maybe see you at next one. Podo on here is organiser if you want to contact him. Or look at this
Thanks for this: the team are in Salisbury, Wiltshire, but the strongest element are the extended family and friends who have never demurred from just being there!
Hi MarkWin and welcome. Your journey of acceptance has been swift and is inspirational. I think that these conditions are often a wake up call, telling us that something is off kilter in our lives and has to change. No time off work for 40 years says it all really. You must have soldiered on through an awful lot. I wish you a happy journey of discovery as you now rearrange your life to suit you.
Hello Mark, As you're finding, adaptation to this disease is a steep learning curve. You're taking the right approach by trying to understand and not fight it. One useful tip I have found is to listen to what your body is telling you and not be too hung up on blood tests and to take time in rebuilding your fitness.
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Touching base 2 years after joining this community.
He's just £48 away from smashing his target *UPDATE* Thanks to you all he smashed his first target and is now well on his way to the £1k
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