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 🫂
The black hole that he left behind will be with you forever..but it's husband shaped - oh and what an awesome shape that must be! You will eventually learn to navigate around that black hole..occasionally you will fall into its abyss; and when you do it's OK to wallow a while. But the time it takes to crawl out will lessen, and the length between times you fall in will lengthen...there is no time frame for this so be kind to yourself.
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🌸
Thank you DL. Reaching out to the forum and the many responses has been quite uplifting. Have now increased pred from 3.5 to 7.5 and hope that will make a positive difference. Still loads of things to get done, funeral is on Monday, hoping for some respite after that. Xx
Yes there will be some respite - but there will be days when it suddenly hits you… something someone says, a piece of music, a memory… and although you think you are prepared for such things they still catch you off guard. Even 13 years on. 55 years there are lots of memories …
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.
Oh so sorry P,my heart goes out to you.It is early days yet,plus having to look after your dear old mum and son.I really,really hope that you have some help in place so that you can grieve properly .Sending you love and a comforting hug we are all here for you and share your pain.Be good to yourself ,and try to make time for you.xxx💐💐💐
so sorry to read of your loss...and the immense emotional and physical demands in your life. Please look after yourself...and if you are have ongoing difficulties sleeping or eating perhaps speak to your gp.
So sorry to hear about your loss .To be honest , I don't know whether you can really tell which is symptoms of a flare in any of your health conditions and what is the physical symptoms of a new bereavement.
It's true that even people with no health issues also suffer physical pain and fatigue and mental health symptoms like brain fog, loss of coordination and insomnia because of the effects of bereavement. Symptoms caused by the bereavement itself will generally last during the bereavement process and will sometimes get worse before they get better for a few weeks after all of the activity and arrangements have finally finished and Grief is left .
I can remember feeling more able to cope with the pain and symptoms before my Mum's funeral even after spending months trying to negotiate with the hospital and keep track of her care during COVID when we could not go and visit.
But, once my body began to relax and my brain was allowed to think of the reality , I actually got a lot of rebound pain as my body was not relying on " fight or flight" anymore and the Fatigue was awful.
I wasn't taking steroids at the time , what I would hope for in your case is that even the lower dose will act as a buffer to the " fight or flight" of bereavement.
But just like the advice you are given about " Sick Day Rules" to prevent a flare from the added Stress of a health change , the method is also meant to be used for " Stress Day Rules" and the period of bereavement is a time when increasing steroids may become a sensible precaution to prevent a flare.
You need to listen to your body with this. If you feel you need the extra help increase the dose a small amount on days you require it. If you don't need it yet it's usually a good precaution to increase your steroid dose by a larger amount on the days before the funeral and the week afterwards.
You can make the choice to vary your doses based on your need.
The increased dose on the " Stress Week" can be tapered down to a dose just above what you are on over the two weeks afterwards and it should not cause you side effects as long as you give yourself the time to rest that you will have been missing at the moment, hydrate well and eat small portion, nutrient rich meals ( 5 portions a day instead of 3) .
Even with your carer commitments you also need to give yourself time to relax and cope with grief during the day, otherwise you may find your mind whirls at night and the temporary sleepless nights you are having now could turn into insomnia , something which would definitely cause your recovery to slow down.
If you can do anything in this time , ask for help from anyone, family, friends or social care services so that you can get some time away from your caring duties to have time alone to rest ( not just to dash about doing jobs) . This will be as much a part of your Preventative Self Care as any increase in steroids because it will reduce the risk of stress related PMR activity. I know it can be hard to ask but I'm sure , especially at this time , there will be many people offering to help for the odd hour or two, so rake advantage of that.
What I do want to say is I admire your strength and your positive words despite your great loss , you will need time for tears but such positive thoughts will help you cope , hugs , Bee x
Thank you Bee, for such a long and thoughtful post. I will take energy from your comments. It is good to hear so many suggesting I take time for myself - that is the conclusion I have been coming to, now I don't feel 'selfish'! Sometimes I think I must have MUG written on my forehead!Xx
Quote the opposite of selfish really , because if you don't take care of yourself you get to the point that you can't look after others either. I'd say you were a heroine rather than a MUG , although I know it sometimes makes you feel like that , especially when your tired and you don't get enough words of thanks.
Sign on the volunteers, it made a big difference to me when I stopped trying to do everything myself, even if things aren't perfect , they are done with less stress to me.
Everything that needs to be said has been written here ; I hope the many words of sympathy, empathy and advice will sustain you and give you strength as you navigate this period. My sincere condolences. 💕
The words I have received here are certainly sustaining me as I knew they would when I posted. This site has been so supportive, lovely to know you are all there xx
I can't put it any better than has already been done here . May you find comfort in your many good memories. Wishing you the strength you need and sending many virtual hugs. ❤️
Heartfelt condolences, virtual love and hugs, and yes, you WILL get through this. You sound a remarkable person. Some 'me' time is a priority.....wishing you well.
So very sorry! All I can do is send virtual hugs. I was first widowed at 39, but had teenagers to keep me going. I realise now how blessed I have been. X
So sorry for your loss. I lost my hubby of 43 years 2 years ago. We met when I was 15 so we had been together for over 45 years. So I can empathise with you. That first year was very hard but things do get easier. Take each day as it comes and be kind to yourself xxx
Let your little girl pants stay on as long as you need them. Grief is a long slow adjustment that shouldn't be a fixture but equally should not be rushed out of the door. You need time to recover, knowing that you will. You don't sound like the kind of person to get submerged in grief but on the other hand you are allowed to feel sorry for yourself. Losing a life partner is like losing and arm and a leg and a good chunk of heart so just take time to recover and rebuild your life with happy memories. I am sure many of us send condolences to your family
So, so sorry to hear this. As my wife and I age, we both realize that one of us will be left behind.... a sobering, painful thought but one which all couples face. Hugs.
It’s positively heartbreaking what you are going through, I don’t know what I’d do if I lost my husband. My heart goes out to you sweetheart, I really don’t know how you are managing to function at all, especially being a carer but unfortunately you have no choice. I lost my best friend to leukaemia not long ago and it still hurts so much, I can now look at our photos and smile instead of crying so it’s getting easier but she’ll always be close to my heart like you’re husband and soulmate always will be.
A mixed blessing being a carer. On the one hand it keeps me going and gives me purpose, on the other it is hard to grieve as keep putting on a brave face. One thing has repeated through these wonderful responses is that I must find time for me. That is what I shall work on when all the dust settles. Thank you for your kind words x
What a kind, caring, compassionate and supportive group our members are., Poshdog. So many responses, such thoughtful wishes. I really hope you find comfort in them as you cope with your loss and responsibilities. Take care of yourself too.
This is a lot to cope with and you need precious time to start recovering. Be good to yourself, you have all my sympathy, you need your friends at this time.
Hugs to you Posh. It's so hard. I've just lost yet another close friend last night. One earlier this week. One 81, the other 61. I wish you super strength. You deserve a super hero cape, nevermind big girl panties, having so much on your plate. I would up the pred for a bit. 🫂 xx
Deepest sympathy Poshdog. No words can soften the blow. That you are still caring for your mother and son amazes me. So strong. The grief is unavoidable but there are still beautiful experiences ahead of you. There is wonder still to perceive and enjoy and this makes our life rich despite the hurdles.
Oh, Im so very sorry, Poshdog. What an awful time for you. To grieve means you have known love. Hold onto that as you navigate your way through the unknown path with strength and fortitude.
In a lifetime, many people never get to fall in love with the right person and remain that way until the inevitable happens. It may not feel that you have been incredibly fortunate right now, but you are, and having those wonderful memories will get you through this awful period. As everyone here has already said, be kind to yourself. If you can offload some of your caring duties onto social services support, please take advantage of that. It will take a load off yourself to figure out how you can take some enjoyable time for yourself. Take care, take time, you deserve it. xx
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