New Year's Eve 2024 was when he died. Heart finally succumbed to flu and the last 3 years of deterioration and caring came to an end.Still coping on 3.5mgs pred. Not sure how pmr responding or what is natural grief. Very tired. All admin to wade through. Still a carer for 102 year old mother and support for adult autistic son.
This is really an off-loading. I know it will get better, as i know spring is just around the corner. Will there be a sense of release? Should I up the pred? When will I sleep deeply again?
You lovely people, who I think of as friends, have been so supportive in the past and I know you will be so now. I shall put my big girl's pants and re-start climbing the mountain.
Love to all ❤️
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Poshdog
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Thank you, I have come to realise I need time to sort out the space he has left. Many would like me to transfer my time to them but need to work out how to turn it into my time. Thank you for your hugs 🫂
You mean just over 2 weeks ago? I'm so sorry and know exactly what you are going through. I was 18 when we met - and entire life with one person, and all of a sudden it has lost half its base - of course we wobble. And I'd had nearly 2 years of doing the day to day stuff through Covid - suddenly that time is for you to use, and you don't really know how to. Not that that is quite so true for you, you have 2 more to occupy your mind. And that admin ...
I think you need to at least double that pred - treat it as sick day rules at present. I struggled at a dose well into the teens and over the following few months was heading for 20mg to be able to cope physically and mentally. And ask for all the help you can - because on your own it is b£^^%* hard work, especially mentally. I was lucky in that there was nothing to do for a funeral, I was spared that, and a lot of it is done for you here - the bank knew before I told them! But be warned - every time you think it is done, something crawls out of the woodwork and says hi!!!
Lots of virtual hugs - it is the best I can offer.
I knew you would make me think. Realising that the time I will have will be for me. Perhaps not a camper van, but why not? Trying not to get ahead of myself but also trying to protect some time for me.. that, I think, is what he would have wanted.Yes, will use sick day rules and hold onto my sanity(or try to). Life does tend to throw curve balls. Virtual hugs go a long way xx
I am so sorry for your loss. Heartbreaking, however expected. In the end, after loosing my daughter recently my rheumatology nurse gave me an IM Kenalog injection. Upping my prednisone by the flare protocol didn’t work. All the initial PMR symptoms came back including the high ESR and CRP. Grief is such a stressor. We are all different but you may well need a steroid boost. Sending much love and empathy your way.
To lose a child must be the worst pain. We are not meant to outlive our children and my heart goes out to you. Shall use sick day rules. Do hope the Kenalog goes someway to helping your pain... love to you
I am so sorry for your loss. It is huge and sounds like it will be hard to find space to grieve. I hope that you can and also that your PMR doesn’t react too much. Sending all the virtual hugs 🤗
So sorry to hear this, my sincere condolences - and very difficult to bear, like many on here I lost my soul mate whilst I still had GCA. It was on our 46th wedding anniversary some 13 years ago.
Yes you probably do need more Pred, any maybe sometime in the future, bereavement can affect people in different ways, and at different times… looking back at my records not long ago, I discovered that for about 12 months whilst OH was terminally ill and 4-5 months after his death I hardly reduced Pred at dose at all. I didn’t actually increase, but only reduced a couple of times and stayed at each dose much longer than normal. For some reason that didn’t actual register at the time, it just seemed the right thing to do.
As PMRpro has said we are always here - so please contact, on forum or by chat which you feel is appropriate.
And please do get as much help as you can to help you.. it’s all about you for now🌸
So sorry to hear your news and my deepest condolences. As you probably know and responded, my husband died in early December and I was 19 when we met and we were married for 55 years. Half of me has gone but I talk to him all the time. I do hope you can get some respite from your continuing traumas. X. 😪
adding my love and Condolences! Praying that you will be able to find strength to resume your caring roles when you are able to. I can’t imagine the hole in your heart. Please be very kind to yourself as you face this pain. Thank you for sharing this massive news.
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