Giving in...reluctantly!

Not as dramatic as it sounds but thought I'd update you on my interesting few days...as some of you know I have had a few stressy episodes lately which I believe has contributed to a flare and am currently on 60mg Pred and excitedly waiting to see Dr Hughes at Chertsey on 15th May....

So last time I posted in the week, I was getting over a nasty ankle sprain and my Dad was having an op...well after initially being discharged early poor Dad was readmitted as an emergency as he couldn't pee and was in agony, 1.5L taken via catheter and he's back home with his natty new accessory for 14 days that my StepMum has named 'Colin' (i have no idea why lol).

So after a fitful night Thursday worrying about him I was off to do some work for the first time in ages, decided to drive so I could manage my day myself and get to where i needed to be in my own time, pulled out of my drive and tootled off down the road when wham! a lady in a 4x4 pulled straight out of a junction in front of me!!! Luckily I managed to slam on the breaks (good old roid rage lol) and just a glancing blow but not a great start to the days stress levels. In my steroid addled state I ended apologising to her and explaining why I was shaking so much and so bloated!?? Why I have no idea but it does make me laugh as I was absolutely thunderous when my OH couldn't find something that was hanging exactly where I said it was in the shed today and I got all hot and bothered tramping up and down the garden...erratic much!?

So Friday was a very busy day despite my good intentions and by evening I was exhausted. (Not least from persuading my lovely colleague who hasn't seen me since my face has turned into a basketball, is very into the total holistic approach telling me that steroids are dreadful and that the Dr's are just trying to scare me with the sight loss). I left her with some research to do and with everyone's advice about not overdoing it I came home and spent an hour in an Epsom salt bath which I have to say felt bloody marvellous after - and then spent pretty much the whole day yesterday relaxing.

When I said to my OH I needed a little nap mid morning as was so tired he even said 'I'm not surprised, you used up too many spoons yesterday'. We've not spoken about the 'spoons' since I tried to explain it and he 'wasn't sure he understood' at the time but he literally read my mind which felt strangely amazing!

So that's my positives! And weirdly my ankle bruising looked a whole lot better after my salty bath...if anyone is interested Asda have Epsom salts at half price at the moment, I'm going back to stock up! (Apparently a good way to get Potassium back in the body which is needed as I'm permanently drenched in sweat at the moment!) sorry if TMI.

So fingers crossed this week will not be too eventful, looking forward my to eldests 16th birthday and the start of his GCSE's so trying to keep the house as calm as possible...and avoid demolishing his birthday cake!

Have a fab evening dear new friends and as ever thanks for being a listening ear x

Tanya x

14 Replies

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  • Oh dear! Your story is wonderful. I mean it. Of course it's not fun and the steroids are dictating your life, but you've a lot of humour and that part I like a lot.

    I could tell similar stories, on 60 mg as well, yeahhhh, and my face looks like a field tomatoe in shape, thankfully not in colour.

    Save some spoons! Thank you for sharing dear new friend, Monika

  • 👍🌈⛅️

    Well done! Sorry that's all I can come up with; steroids kicking in so time for bed!

  • Hard to top a couple of days like that! Glad ankle on the mend. Epsom salts, btw, give you magnesium, also a much needed mineral. :)

  • Hi Trixiechamp,

    Keep up the good work if you can, it's better to laugh than cry! All the medical sites I've been on for PMR say it's a common condition (I'd never heard of it before I had it) and lots of people have an opinion on it. I know they mean well but would they dismiss steroids if they were at risk of loosing their sight? My main annoyance is when I tell people what I've had they say "Oh you mean fibromyalgia don't you?" as if I wouldn't be able to remember the name of the thing that had disabled me! Ahh well, keep calm and carry on.

    I think they should give us badges when we start steroids that state 'Warning steroid user. Do not expect any sense'. The world would be a lot less confusing for non-sufferers!

    All best wishes for a serene and calm atmosphere and a successful tapering off the pred.

  • Seems you are doing remarkably well given the recent stress load. That collision would have had me amped up for most of the day, taking regulating breaths to restore my nervous system. I find I don't re-regulate very smoothly from untoward events.

  • Not potassium - magnesium in Epsom salts!

    I now have a phobia of people stopped at side roads pulling out in front of me since it happened a few years ago. I was only about 10 yards away when an elderly gentleman (not what I called him believe me!) decided he'd pull out having already stopped. Nowhere to go as cars were coming the other way but I did avoid t-boning him. His little very elderly VW Golf sat there and bit after bit just fell off. My newer and larger Passat had £12,000 damage because of the number of panels that were not well but the BMW bodyshop in Munich sent it back as good as new! Luckily the police who came out calmed me down or I'd have been arrested for GBH - they laughed at him when he claimed I had been going too fast!

    So know exactly where you are coming from and I'm surprised you didn't crown the colleague.

    Only a week to go ...

  • Yes magnesium...doh! Pred brain lol but it made me feel better. Didn't help that it's almost the exact spot my youngest got knocked down by a car two and a half years ago which I believe started me on this lovely health 'blip'. (Note me trying to be positive that this will pass 😉)

    Now I've just had to rush and pick him up from school as he's got a horrendous headache and is vomiting...can't even keep medicine down, I honestly can't remember the last time he had a sick bug, at least 6 years ago...you have to laugh.....what's that saying it never rains 😂😂 guess we won't be going out for dinner for eldest 16th tomorrow...oh well there's always take out....

  • Hope he's all right. It could be a bug, but a headache and vomiting could also be migraine. My middle child used to vomit and we didn't know why until I cottoned onto the fact that this happened during or at the end of a hot sunny day. Dehydration and bright sun can give me a migraine. Began to treat him as if he had migraine (he'd never complained of headache) and bingo, no more episodes! He learned what a headache was and started to treat himself with ice pack, rest in a dark room etc. Long since an independent adult living in his own home, but he evidently has managed his migraine tendency very well.

  • Apparently children often experience migraine as abdominal pain. And no - no idea why!

  • Yes I think it may well have been a migraine bless him, once the headache went he stopped vomiting and has been ok since midday yesteday, fingers crossed this isn't the start of them, I used to get migraines (hormone related) and it's horrible!

  • I got suspicious when none of the rest of us ever got sick when this son did. As you too have experienced them you will have some idea of strategies to help your son if indeed he's started to suffer from them. The first three I had I remember clearly. I also observed, clever me, that every one of them had happened after I'd drunk an ice cream soda, a treat I'd never had before. So never any of those again! I'm sure many, not all, of my headaches over the years have been related to food, probably to food colouring or some other artificial additive.

  • Yes I really think he dehydrated himself on Sunday...need to keep that water bottle with him!!

  • Hey - with a story like that it's not 'giving in'. It's intelligent management of the current circumstances!

  • "Giving in reluctantly" - doesn't sound like that to me! Love your sense of humour and do hope everything goes well for your appointment with Consultant. I'm sure it will. XJackie

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