Stress - I ignored the obvious ...

[Predderman2020]

I should know this by now after nearly 4 years of PMR.

I am normally reasonably OK at dealing with stress, but there is a limit. Now I know all too well that PMR flares are indeed one of the ugly lovechilds of major stress.

I am 68 but still working. One of my sidelines suffered terribly in Covid and started to fail properly in November. This was supposed to be our retirement 'icing on the cake'. I spent months working on possible solutions hunched over the computer, but to no avail.

I felt that if I could maintain a stable pred intake, then this would reassure me that I was still on track in one part of my life. That was a mistake. I should have been more vigilant.

QOL, PMRpro!

I had to go back to UK several times from Malta where I live, and the flights were very badly delayed to the extend that for 48 hours I had no sleep at all.

I started noticing growing pain, particularly headaches and malaise, but I attributed that to my bodily position when working. As you might have seen from posts in October, I had severe and atypical 'veinous' pain in my temple at the time and I immediately took action (thanks for the great advice, all) to ward off a possible GCA, which may or may not have been about to hit.

Then, unbeknownst to my wife and I, she had caused a subdural bleed by banging her head on a low ceiling. Her distress grew over the following 3 weeks until her headaches were appalling and an MRI which showed a significant bleed. She was immediately admitted to (a very professional state) hospital in Malta for a week, with instructions thereafter to stay within a few minutes of the hospital for two weeks. (We had packed for one night).

At the same time, the company referred to above went down, and I was fielding calls at her bedside to try to salvage part of our future. To no avail. I had no time or inclination to read documentation, and just signed it.

After a week in hospital she was discharged, but bed-bound, and we made the best of it in temporary accommodation before going back to our apartment on the neighbouring island two weeks later.

Meanwhile, I thought it would be a great idea to reduce by 1 mg from 7.5mgs to 6.5. Stupid idea.

I already had a significant and growing flare, but was too confused and distracted to think it through. I thought I might have the edge of flu, or something.

Nothing could touch the (now severe) pain, head, arms, wrists, fatigue - paracetamol, Ibuprofen, sumatriptan, codeine etc were all useless. I didn't want to mention it to my wife for obvious reasons.

The main thing, thank God, is my wife is now beginning to improve cognitively and is much less distressed. With a good prognosis. Fantastic. Weather is good here and we have been out twice.

It was only then that it suddenly occurred to me that I had lost track of what I was doing on dosage, and went straight from 6.5 to 15 mgs - you can buy Prednisolone extremely cheaply over the counter here so no problems with Doctors putting their oars in.

By the end of the first day at 15 mgs the pain was beginning to clear, and by the end of the second day I was as good as I have been on Pred which is pretty good. I am now day 3. And now I need to think about finding a lower dose now the 'dripping bucket' is emptying.

One reason I am reporting this is that we are warned by Doctors not to yo-yo our dosage. That is fine, I suppose, but as a rigid rule in my case it was the wrong decision by a very wide margin.

[DorsetLady PMRGCAuk volunteer]

hi,

As you rightly say, no wonder you flared, so sorry to hear about your wife, do hope improvement continues.

Usual advise for dealing with a flare contained in this - and maybe back to 8mg. Stay there until you are sure everything settled [you and wife] - and then think about reducing- and maybe only 0.5mg a time…

healthunlocked.com/pmrgcauk...

[Predderman2020 in reply to DorsetLady]

I am going to do that - thanks - travelling past 10 mgs as we speak ... . Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

Good luck…

[SnazzyD]

Goodness what a time you’ve had! So glad that things are levelling out a bit. You took one of life’s broadside shots and a flare isn’t surprising. I don’t think it unusual to explain away the body’s flashing red lights as something lesser when deep in a crisis; one just doesn’t have the time or headspace sometimes. It can happen with any physical problem too.

There is a difference between what we call yo-yoing and a flare and I wouldn’t call what you did yo-yoing. You had sustained extraordinary mental and physical stress and a flare was a byproduct of that and you had to respond. Yo-yoing is more about when people persistently reduce too fast, overshoot their minimum dose, go back up and repeat to a greater or lesser degree. Sometimes it occurs when someone habitually raises their dose in order to accommodate their activities instead of making changes, so using it to keep up their pep.

In your case, I wouldn’t reduce too quickly and stay there at least a week. Then I’d reduce by 0.5mg. You may feel the stress has reduced a lot but sometimes when it has been so bad, a good improvement feels like situation normal when it isn’t. Also, I’m not sure that the body is always in step with what one’s brain says is in the all clear and takes a bit of time to stop screaming. No doubt more advice will be incoming, so sit tight.

[Predderman2020 in reply to SnazzyD]

I am being very cautious - and that seems to be the consensus. I am very grateful to you and others.

[PMRpro Ambassador]

Lesson learned?? So glad to hear things are improving - that must have been some clout she gave herself on the ceiling. Was she on blood thinners?

There is yoyoing and there is responding to the situation - and the dose you were at was borderline for coping with potentially life-threatening for your wife and at least life-changing events for you both, When my husband was first ill I had to go up to be able to deal with what I had to do physically. I didn't go back down afterwards because the needs continued. Caring for a frail partner who is mentally and physically challenged is very hard work - not only physically but also mentally. Indeed, you can usually get help with the physical things but your own mental health is another matter. Cottonwool brain doesn't come into it - and you were dealing with very demanding events beside the fact your wife was so ill.

The best laid plans and all that - can go to pot in a single swipe. My husband fell and everything changed. He had a pretty mouldy health background anyway - I'm sure your wife will come through this but it will take time and things won't be the same. You will have to adapt.

[Predderman2020 in reply to PMRpro]

Thanks! Yes, she was doing a daughter's baby's laundry in the basement of a house in London and forgot momentarily the height of the ceiling as she stood back up. No thinners, and no follow-on bleed. Now shrinking apparently. I agree with what you said about the caring. You are tuned 'on' all the time. Tiring. And horizons shrink to 24 hours. A pity really because I was at 4.5 mgs in Jan/Feb of last year, and skiing. Never mind. From what I read your caring lasted much, much longer. Thanks again.

[PMRpro Ambassador in reply to Predderman2020]

And it didn't have a happy end, that was programmed and nothing could change it being all downhill. You don't sleep properly because you are always listening. But it all fades into the background when it is done and dusted.

[Predderman2020 in reply to PMRpro]

At least that's something. Sorry about the whole experience which I can sympathise with very much now.

[PMRpro Ambassador in reply to Predderman2020]

I have to look at it as I had an extra 26 years of him - he had a life-threatening brush with the big C in his early 40s which he survived thanks to colleagues who expedited management when the GP was being a prat and a minor miracle. But that illness laid the ground for the later deterioration: one lung was removed, that inevitably leads to heart failure in the long run and heart failure results in general organ failure.

[Predderman2020 in reply to PMRpro]

Must have been hard for you with your knowledge of that inevitability - lucky guy to have had you from the sounds of it.