advice needed re sick caretaker

[Twopies]

my husband who does everything—lifting laundry, hanging it up, emptying the dishwasher, doing most of meal prep, taking out trash, etc., is on crutches with perhaps a torn meniscus. So I’m fetching for him and trying to keep our home in some sort of routine and my pmr isn’t liking it. Before his injury, I was walking 3000 steps per day, now its 5000-6000 (all around the house). Aches, soreness and stiffness everywhere, can’t sleep either, It’s going to be awhile before he’s up and at em again, doc gave him cortisone injection, we’re hoping it will kick in and he can ditch the crutches soon. In the meantime, do I tough it out? I’m using dsns to get to 5 mg pred, about in middle of the phase in. Will the aches and pain pass when I’m back to my usual routine, do you think? In the meantime, there’s no rest of the wicked, as they say. (We do have a house cleaner starting next week which will alleviate some of the worry). Thanks!

[DorsetLady PMRGCAuk volunteer]

No point in toughing it out -very rarely works - and you don’t know how long you need to “do more”

At the very least go back to previous dose -but you may find you need a little extra to help you through current hiatus…

Hope your husband is soon better, for both of you…

[Twopies in reply to DorsetLady]

Gosh, your response brought tears to my eyes. So go to previous dose of 6? Stay for say up to 10 days snd then resume taper from where I was or start over? Thanks!

[DorsetLady PMRGCAuk volunteer in reply to Twopies]

Yes - back to 6mg -see how you are after 10 days, and how things are at home. Then decide what to do -stay there a bit longer if necessary. I’d be inclined to then restart taper rather than leap in half way through…

[Twopies in reply to DorsetLady]

Thanks, sounds good. More tears tho—I ain’t ever gonna get to 5 mg; I’ve tried 50,000 times. (I know 6 isn’t bad, I just can’t seem to taper to 5, something always happens. Just venting, appreciate your kind and helpful responses.

[DorsetLady PMRGCAuk volunteer in reply to Twopies]

Hopefully you will get to 5mg and below -but maybe try first step to 5.5mg even with DSNS….. 😊

[PMRpro Ambassador]

Well for a start - stop reducing and seriously consider going up. I was sole carer, OH did nothing physical, all up to me, and that required "enough", Then when he was ill and my share got even bigger plus the stress, I needed even more.

Toughing it out doesn't work, you have to have enough for the inflammation and for the adrenals. If you don't you run the risk of not being able to care for him. If you are broke - you are in a mess.

The harder you try to push for 5mg, the harder it will become to get there. Your body knows what it needs and it is telling you. Listen to all the others who have got through the low pred barriers who have had to stop doing all sorts of things - and realise that there are situations when you have to cut your losses. There will be another chance when your body is ready to reduce AND cope with life events.

[Twopies in reply to PMRpro]

Yes, I remember the heart wrenching time with your OH. I hadn’t thought about the adrenal thing not being able to handle the stress; it clearly cannot handle the recent life events. By early evening I.cannot,move. Have upped to 6, indeed may need more. Will see how this day goes with once again trying to pace myself.

[HeronNS]

I'm so sorry.

If it helps, think of your slightly raised dose of pred as replacement for the natural cortisol you normally would make if you'd never taken pred. It's not just about relieving your symptoms but also about staying healthy.

If symptoms are PMR and not only muscles complaining about unaccustomed activity, that shows you really are still in the active phase of PMR and you know when that's the case there's always a point where another taper will be a step too far. At least you are stumbling at a low dose, and when you, your body, and your household situation align in a positive way, then a new taper should be on the horizon. At the moment, keep feeling as well as you can, for both your sake and your housemate's. This too shall pass! 🌻

[Twopies in reply to HeronNS]

Thank you. Yes, the cortisol thing that I had not considered, well, hard to tell re unaccustomed activity vs. pmr— I ache in places where I didn’t realize I had places. For one thing, I’ve never been able to stand for very long, let alone walk many steps so the recent necessary uptake in activity is biting back. Remember the male poster on here who said one time he was at a store, crashed, had to lay down under a clothing rack because he couldn’t move? That’s me by the end of the day. Hoping for a better day here today, hubs is walking better on crutches, so my must do list is shortened.

[borednow]

Please give your husband my best wishes for a speedy recovery although maybe he's enjoying the rest!!

[Missus835]

So sorry to hear you have to go through this after all you've done to taper. You'll get there twopies. Can't look after hubby if you aren't well. All the best to both of you.🌹

[Bramble2000]

Prioritise! Write a list of all the things that needs doing, be they daily, weekly etc. Then go through them and prioritise . Nothing will happen if the bathroom isn’t cleaned or the sheets aren’t changed. If you can afford it, get someone in to help? X

[Twopies in reply to Bramble2000]

You’re right, nothing will happen if things slide. Just hope the health dept doesn’t show up! And we do have help coming in starting next week, big relief. Except she will see the squalor….😬

[Hulotsholiday in reply to Twopies]

The ‘squalor’ is in your mind. I guess she’ll see a home with two people who need some support. Live by what matters. The health and well being of you both; opinions of others are irrelevant. And I’d bet my last cent she’s seen worse.

[PMRpro Ambassador in reply to Twopies]

Er - I suspect you don't have a clue what true squalor is. Believe me - it doesn't build up in a month!!!! Unless you are truly gifted ...

[Gimme in reply to PMRpro]

I'm inclined to agree. I lost my cleaner a month ago (not under all the dust and debris, I hasten to add) and I haven't managed to do any cleaning since, with the exception of the kitchen and the toilet. I've realised that it really is outside my capabilities atm. I've settled for lowering my expectations and I haven't reached the point where I am too embarrassed to allow visitors into the house just yet. Any complaints and they will be handed a duster and the hoover.

[Twopies in reply to Gimme]

Made me laugh out loud…and that’s hard to do!

[Gimme in reply to Twopies]

Actually, it has got me thinking now. Maybe I have found a solution for both of us. Invite some able bodied friends round for a little light cleaning and then have a small party with cheese and wine and cake for when they have finished. Sorted! 😜

[allofaquandry in reply to PMRpro]

😂

[Bramble2000 in reply to Twopies]

She’ll have seen it all before, and worse! X

[Hunter134 in reply to Twopies]

I am a caregiver and some days are hard.You most likely get your husband back very soon.If iam under stress and I hurt I do the most important chore at hand.Rest in between.Make a soup or something that we can eat over a few days.My husband cuts the veggies in a chair lol.You ll get back to the low dose soon.I struggle getting down from 10 due to stress.Good luck you've got this♥️

[Twopies in reply to Hunter134]

This is exactly what we did today! He cut things up while sitting at the table, I made the soup. I upped the pred today to 8, it seems to have really helped (I was skeptical). Sure hope you can get a handle on the stress, I just hadn’t realized how it could exacerbate our symptoms.

[Hunter134 in reply to Twopies]

Just do what u can.Things will get better. I laughed at you making soup like me.lol