I'm thinking about realistic self- management goa... - PMRGCAuk

PMRGCAuk

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I'm thinking about realistic self- management goals for this first month.

KinnearD
KinnearD

Some of my initial panic has receded and I have reasonable symptom control finally starting on my third week of Pred. I'm on a 15mg split dose taking 5mg around 10pm...get off to sleep for about 2 hours, wakely wakely for an hour or more and then take the other 10mg when my next wakeup is around 4-5am. I then seem able to sleep again until 7am. My mornings are reclaimed without too much stiffness I have taken 1/4 to a half zophiclone the last three nights just to initiate some sleep. I will not continue to take them tonight however they were helpful getting off to sleep and I will ask the doctor for some as a backup. . So husband is AWOL this week addressing a extended family crises and he wont be home for the next week ( easier to handle than the unexpected change at home, I think). My adult son leaves tomorrow morning. Having him here has been very stabilising for me. I will have the week or more ahead to get a routine going without attending to others So my wonderings. I do not want to tinker with the meds just now. . I will email my GP tomorrow. I'm managing on the 15mg, doing very little activity other than project manager for my son. I'm feeling quite vulnerable emotionally realizing I do need to self manage. This is a longterm issue and my husband is probably going to be less helpful than I thought. I feel unable to provide support or valid even his decision to address long outstanding issues in his family of origin at this particular time This self focus is totally out of character for me. It feels selfish. Yet there is no real flexibility to take on anyone else's emotional baggage ( I'm a longtime trauma counsellor just changed my status from semi to retired. Thanks to PMR. Do I stick with several more weeks resting, pottering, short walks,adhering to this dose before attempting more activity. I found if I did more I needed to take the extra 5mg. I want to avoid that if possible. Would others tend to take a higher dose and do more? The major symptoms are the leaden arms in the evening and hips etc if I've been more active. I'm tired. Still struggling to adjust to this sudden lifestyle change. Struggling seeing my family trying to cope or not. Thankful its not worse. Sometime feel as if I'm not really as unwell as I think. I have little appetite and have lost several kg. I'm attempting to eat enough higher protein and no refined carb. Sorry. Feeling quite isolated here.

25 Replies

Hi, you are not alone, ever. Always someone here to have a moan with. You sound a bit down at the moment which is fine you are still coming to terms with a life changing illness but this will get better. I felt as if I was dragging someone else’s body around in the early days, sort of who has taken my body and left me with this old wreck. It also took some time for my husband to come to terms with my illness, that the old me was temporarily out of action and the new me needed to take life much more slowly. Forward planning, pacing myself and lots of rest gets me through most things if I overdo anything I will surely pay for it the following day.

If splitting your pred works for you then stick with it at least for the present, one size does not fit all as we are all different and react to the meds differently. Hope you are feeling better very soon, there is light at the end of the tunnel and its not dark all the way. Sending a virtual hug 🤗

KinnearD
KinnearD in reply to CT-5012

I recognize the depressive edge. It helps to reach out and be heard xxxx

Hi. I’m at the same stage as you and can say I understand you completely. I’m really struggling atm as apart from having lost a stone in weight no one can really see any change in me. Any family expect me to be better. My wonderful dad who lives with me tries hard, but I see the hope in his eyes each day that I will be better. I try to concentrate on what I have achieved however small atm

scats
scats in reply to Wraysbury

Every one here understands what you are both going through. The initial adjusments for both you and your family can take a while. You have probably been the caring one and now you must start to include yourself as one that needs caring. Be kind to yourself, do what needs to be done for you to start feeling better and eventually you will be able to do more.

Often repeated here is the fact that we are all different don't expect to always need the same as some one else but have a mind that's open to all suggestions, one will help.

KinnearD
KinnearD in reply to Wraysbury

Thank you. I will stay in touch. Scary times.

KinnearD
KinnearD in reply to Wraysbury

Thank goodness for the forum. Xxx

There is such a lot in your post. You sound as if you feel a bit abandoned right now. With your husband’s family claiming his presence, time and attention. I think it is fair to say that we do feel particularly sensitive with these illnesses. As you rightly say, a week on your own will allow you to live at your own pace, with your own routines and without the demands of others.

You are ill at the moment. There should be no guilt in resting. Certainly don’t use more Pred to get more activity out of yourself. Prednisalone is only dealing with the pain and stiffness, caused by the inflammation. You are still quite ill and need to take great care. You need to pace your activities quite carefully, interspersed with lots of rest.

I have always taken my Pred in one dose. That seems to work best for. Me.

Don’t feel alone. You have always got us.

I do feel abandoned by my husband and feel unable to offer any comfort or understanding for his decision to go. Very unmet!! Son leaves early tomorrow. I know it's alright and I'm not so scared of the symptoms now. Probably easier alone really. Xxx

PMRpro
PMRproAmbassador in reply to KinnearD

I was just thinking that - I actually LIKE being on my own to sort out how I feel. Providing I'm well enough to make a pot of tea...

KinnearD
KinnearD in reply to PMRpro

And you know in spite of feeling all weepy just now and disconnected from the difficulty my husband may have addressing his mother's decline, I agree. I'm not scared of the heaviness. If you will excuse the language, and this has been a special sort of time with my son, I feel bloody mad that my vulnerability got exposed to our kids. Somehow it projects me into an older phase of life that I want to be in. Lovely care of old mum!! BIOTMS.

PMRpro
PMRproAmbassador in reply to KinnearD

Except PMR will improve - and old age progresses unfortunately. I was quite unwell after a severe episode of drug-induced atrial fibrillation and one daughter flew over to see me while in hospital. I wasn't happy either - I wasn't at death's door and I was in hospital so being looked after. I would have rather she'd come once i was home. But she did provide OH with some much needed moral support.

When he was in hospital this summer I told no-one - and we got into rotten trouble when we DID tell the girls about it! But it was easier to deal with on my own without having to allay unnecessary fears on their part. Inbetween traipsing back and forth to the hospital I just wanted peace...

HeronNS
HeronNS in reply to KinnearD

When I broke my leg a few years ago our son happened to be staying with us while he transitioned from a job "away" to moving back here to a better one. He was much more caring and empathetic of me than hubby, who would swan off to work without even asking me if I'd like a glass of water within reach. I think children do need to know about their parents' needs, at least once they are adults themselves. It's good for them to know.

KinnearD
KinnearD in reply to HeronNS

That swanning off and no water in reach gave me a welcome chuckle or two this morning. I know you are right!

scats
scats in reply to PMRpro

Coffee!

PMRpro
PMRproAmbassador in reply to scats

The amount of tea I drink I'd take off if I switched to coffee...

scats
scats in reply to PMRpro

It has no effect on me! Don't know what that says about me, but none after 6pm.

I absolutely relate to all you say. It DOES get better, or is it that my ability to plan in advance, rest, use my spoons etc just gets better?

My life is very different from what it was, but it is GOOD! Though it is pretty much what you say...resting, pottering, short walks.

For instance I love entertaining. I still do it, but whereas cooking a three course meal for 8 used to be possible in one day and then enjoy the evening, I now need to do it in 3 or 4 ‘pottering’ sessions during the previous week, do very little on the actual day, have a pm kip, and then enjoy myself! But that is what I enjoy, and so I have found a way to do it.

I’m not sure it would be a good idea to take 5 mg more, UNLESS your original symptoms have not improved by at least 70%. Some people do need a higher dose though, so if your improvement (pain wise) is less than 70%,it might be worth a word with your doctor.

The fatigue etc chunters on all the time the disease is active.

Hope this helps, and that you feel better in yourself soon.

Xxx

For heaven's sake do look after yourself first. I learnt the hard way that self care isn't being selfish. I think women in particular are conditioned to put everyone else's needs before their own but how can you care for others if you are so depleted yourself? It is difficult to adjust to being so tired all the time especially when other people don't understand, this is where this forum is so helpful. PMR is an auto immune illness so, just like any other illness, it will make you tired. You will find ways of coping and pacing yourself in time. The adjustment is hard though.

PMRpro
PMRproAmbassador

Personally I would suggest that if you have evening symptoms you need to take the other 5mg rather earlier than 10pm. It takes about 1-2 hours to work so take it about that long before you expect to see a return of the heavy arms. That might also help your sleep pattern.

But yes, for the moment - no heroics if you don't want to take more. And that also means don't try to reduce until you feel pretty decent (relatively speaking that is).

Hidden
Hidden

Hi,

I think we are more sensitive to outside factors but as the others have said, you are now in a position to rest, read, sit in the garden, watch TV or a DVD

Order some food online if you haven’t got everything you need for the week, or arrange a lunch date with friends.

But don’t set yourself challenges, it’s way too soon, you need to rest & recoup, actually that’s what l’m doing in France at my Son & DIL’s we’ve had a very busy time the last few months, l have some issues Meds Related & the subsequent effect on my PMR

I’m interested as to why you take your Pred in a split dose & at night? It’s usually morning & the whole dose (though some of us have dallied with it & some continued to so) just unusual for a new diagnosis.

Make the most of your week & if you can’t manage to make the bed just straighten it!

Take Care

Mrs N 💅🏼

What the others said.

Plus, to address one of your specific questions. Do you feel okay when you just take your regular dose? If, at this early stage, you are still getting what we call "niggles" even if you have a restful day I suggest you do need a little bit more on a daily basis for a couple more weeks. I think that would be better for you than having the occasional relatively large top-up which might end up with your getting into a yoyo pattern and that can make future tapering more difficult. On the other hand, if you feel well when you are resting and living life at your own and no one else's pace, then I think you have your answer. For the time being treat yourself as though you are recovering from a bad case of the flu, like an invalid in a way. Just be sure to get your little walks in the fresh air and don't allow yourself to be come too isolated. Leaving a job can be very traumatic, too, even though you don't think it will be, so find something you loved about your work and try to emulate that in your new life. In my case it was the social interaction with my co-workers and the public whom I dealt with, not easy to replicate, but somehow one finds ways.

All the best. And do keep in touch, let us know how you get on from day to day!

The issue is that a single dose 15mg early breakfast doesn't cover 24 hours. The slight arm and hip heaviness around 7pm becomes increasingly difficult after about 16 hours and I cant sleep and the split dose messes with sleep anyway. I need a hot wheatie, struggle through until a respectable 3-4 am to take the other 10mg. Last night was the most difficult though in terms of pain rather than stiffness. I was going to sleep until an early loo visit take 1/3 and then take the other 2/3 when I woke again. That was the plan. In fact I took 5mg at 12:30am because I was still awake and too sore to sleep. I took the other 10mg in desperation at 3:00am very sore. I slept until 5am farewelled son from my pillow, and got a hot wheatie, slept until 7:30. Sorry to be so long winded!! My arms feel as if they are recovering from a punch up. As I'm writing this I think it may be wiser to accept a single 20mg dose taking it as far into the dawn as I can manage. Say I take 5mg now meaning I've taken 20mg total between 12:30am and 9am this morning. I rest up adjusting to the freedom of being alone. Practice good sleep hygiene going to bed at a reasonable time with adequate warmth. If I need the 20mg at 1am tomorrow I take it but ideally getting into that 2-4am window or later and repeat this getting a better idea of exactly how long 20mg ( not 15mg) will hold me with reasonable control. This week I have more control of the externals

Hidden
Hidden in reply to KinnearD

Best Wishes KinnearD maybe the 20mg may hold it at bay a bit longer, if my understanding is correct this was a two week trial? So see what your GP thinks, I’m just a little concerned that taking it at different times may confuse your body & the outcome. I’m no expert but have had PMR almost seven years & always took it in a morning except for a short time last year when I was in the Far East when l split the dose.

Good Luck & Best Wishes 🍀

Lots of emotions going on at the moment and we all recognise pieces of 'where you're at'. As has already been said being on your own for now should help you lots, your emotions, apart from taking steroids, are having a lot to contend with, family issues etc but the 'leaving work bit' probably has more to answer for than you think - yes you needed to retire but having an illness that hasn't stabilised too is probably the icing on the cake that's melting in the heat, if you get me? I can't comment on your split dosage as never done it (I have GCA too) but another chat with your GP might be the way. Do you have a Rheumie? If not might be worth getting a referral even if you only see them once and go back to your GP for the long term management. Re your husband not understanding your illness, you need to accept that for now for your own sake and gradually he will learn - he will not be accepting you are ill that's for sure - a lot of men hate to see us any different than we've always been and go into denial - remember actions speak louder than words - he needs to see you're unwell rather than being told. ATB.

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