Hi everyone
i will be staying with my daughter and family for a few days on Thursday which is normally stressful even before PMR. I'm thinking about increasing my preds from 9mg to 10mg while I'm there. Would you recommend this? I would appreciate your advice. Thank you.
I would have it with me so I could up it if I needed it but I wouldn't get into the habit of upping the dose "just in case".
Hi Marlenec,
I do sympathise but Pred. Is not mother's little helper, it doesn't make you serene and all water off a ducks back, it's more likely to make you fly off the handle ( if you are American, this means lose your temper). Only take extra if you are getting symptoms and maybe recovering afterwards. I am speaking from embarrassing experience ( I almost made my son in law cry) excruciating!
Thank you I'll bear that in mind but it is usually me who does the crying on the way home!
Sorry Marlenec, I can relate to this painful situation and the futility of arguing the justice of small areas of conflict. My eldest daughter has lived in Australia for 13 years, in spite of visiting 9 times ( very expensive) it is hard to have a meaningful relationship with my grandchildren, Sam aged 8 and Ruby aged 4. When my middle daughter had Theo, I was determined to be involved with him and have cared for him regularly, we love each other very much. A room in my house is child heaven with toys and activities. This daughter and her husband and Theo and a baby expected in April are making plans to go out to Australia for a year. This is easy because her husband is a doctor. The plan is to stay for the duration of her maternity leave because she has a good job here. To say I feel devastated is an understatement. I try to hide it and say the right things. So it seems to be making our last months fraught. It's almost like my daughter is fault finding and pushing me away to make the separation easier for her. I understand that they need to live their own lives and have adventures. It also pleases me that the two little families will get to know each other. But my heart is breaking. I fear that they will stay, doctors are paid twice as much and are treated better there.
I tell myself that true love is being able to let go and I trust that the love I have planted in each little grandchild's heart will continue to grow. My eldest grandchild cried at school on a special day for grandparents and showed me off like a queen on my last visit, shouting Grandma often, to show the other kids that he'd got one.
What has this got to do with PMR?
Well it ain't helping, that's for sure!
Sorry to vent my howl of anguish but if not here where?
Thank you for your reply. Yes I'm not surprised your heart is breaking and my heart goes out to you. I hope you have a lot of support and although you say "whats this to do with PMR" I think it has, as it is all worrying and so upsetting to say the least. I keep telling myself that I'm lucky, as my son-in-law is Australian, but he can earn much more in London, otherwise I know they'd live in Australia too. How lovely for you on Grandparents Day and I know you will have had tears too, these memories are so precious.
I know this site is amazing - so many clever and caring people.
Good luck with everything and please contact me if I can offer any kind of support. xx
Thanks Marlenec! I blame myself for taking my children on good holidays abroad - it gave them a love of travel. I wish We'd taken them to Skegness.
I hope your visit goes well imagine us like a Greek Chorus behind you, understanding you and valuing you all the time you're there. 🌹
Other way round in our house - the girls grew up in Germany until oH decided it was time to return to the UK, none of us wanted to come back, our friends were there.
Now they are in the UK and we left home - for Italy. Changing the locks would have been cheaper...
My husband keeps showing me the details of fabulous apartments.I guess he's trying to tell me to turn the page.
I was in the same position as your daughter - my dreadful husband went to work in Germany when our first child was 18 months old. My mother didn't speak to me for 3 weeks even though I was there for lunch every day. What was I supposed to do? Split from him or insist he gave up a wonderful career opportunity? My relationship with my mother never recovered - she ignored letters from us, just as she had ignored letters from me when I went to university and she thought I shouldn't go. And refused to visit us although she could have quite easily. After we went home she came to Germany on holiday - and fell in love with it!
She went to her GP and poured it out to him. He told her quite directly to pull herself together and go and join WRVS or something to get her out of the house. She started with helping with meals on wheels - and never looked back, ending up being in charge of one of their cafes for years, until her death from chronic heart failure at 79. She often said she was grateful to him - she had discovered that there were many people far worse off than her.
I'm not telling you this to hurt you - but am asking you to believe me it isn't easy for your daughter either and you WILL find another place for you. Honestly xxx
Thanks for taking the trouble to share this. I am not reacting like your mum did, in that there are no threats or telling her not to go. In fact I've tried to be positive about the adventure they will have. In fact venting in the post is probably the biggest outward reaction I've had. My sadness is that I have looked after their son every week practically since he was tiny and I am sad to miss such intimate contact as he grows older. I was always a full time working mum, this is the first time I have fully appreciated the magic of little children.
The same daughter did a year of her degree in Melbourne and I was fine with that ( I funded it). I think it's just the hands on grandma bit that I'll miss. My husband also wants us to get a dog. You have to hand it to him, he's trying, very trying!
I am sorry that you never quite resolved your relationship with your mum. I am glad she found a purpose in her life. Perhaps this is about PMR in that I gave up my voluntary work and travelling to see scattered friends, so Theo, for whom I conserve energy, is all I have at the moment.
I resolve not to give in to the childish impulse to be punishing about them going. Also to use clear communication about how it makes me feel,and make efforts to maintain a changed but still valuable relationship.
God life's hard sometimes.
No, I didn't think you were - but maybe your daughter THINKS you are, or maybe she, perversely, thinks you SHOULD be. Or wants you to.
Time for the sit down and talk perhaps?
You're right, my stoic probably looks a bit martyred. I've just arranged a pregnancy massage for her, maybe after that?
Thanks again.
I need to get my two cents into this conversation. When my two grandsons were growing up they lived 45 minutes from my house they came to me and I went to them. Twice a week. I willingly babysat and took them for the weekend. It was wonderful I lived one block from the ocean and Boardwalk with games and rides. Needless to say they never said no. Now one is going on 22 this month and the other will be 24. Ask me how often I hear from them. Thank goodness for the memories made. Of course I live 1200 miles away now And each has his own life. We did bond and that feeling will be there forever it's in the ❤️. I do miss them terribly.
That sounds like a wonderful period of time Nap1. You will always be part of those boys whether they acknowledge it or not, it's part of a happy childhood that forms the bedrock of a happy life.
They'll consciously remember when they become dads. Well done!
Hi Marlenec
Bless You, a trip that's going to make you stressed is not good for you. Increasing Prednisolone even by 1mg just incase is not really a good idea as it may then become the norm for your way of dealing with things.
I would suggest you speak to your daughter before you go explain about PMR & that you need to take it easy, reiterate that you may look well but that you are not!
It took me a long time to make new rules & to live my life my way. I avoid people who stress me out & l decided to Retire early as my job was far too stressful, resulting in me being on too high a dose of Prednisolone for far too long.
Insist you take a nap every afternoon while you're there; be a Guest & not Mum/Grandma!
Let us know how you get on
Very Best Wishes
Mrs N x
Thank you Mrs N for your good wishes. Sounds silly but the problem is I want to be grandma to my 3 granddaughters but only allowed to stay a couple of days about 4/5 times a year and I miss them so much. We live in Leeds and they moved from Manchester to Surrey in August but as we are retired it's no problem for us to drive down anytime. We used to babysit and take them on holiday for a week each year, but we are not needed now and they now go abroad for all school holidays. I told my daughter I had PMR when diagnosed in Sept, and although she is a retired health professional, did not take any interest and has never asked me how I am doing. We were there for Christmas and when we asked if we could have a rough idea what time main meal would be, so I knew what time to take Lanzoprazole, we were snapped at so I haven't mentioned PMR since. The youngest one,7, takes me off to play with her and is upset when we leave, she has written me a beautiful poem telling me how much she loves me. The reason I usually cry on the way back is because I don't know when we can visit again. We are down this w/e because I pleaded to see the little one in a national gymnastics comp, and we can stay until after breakfast on Sunday. I must be positive, just concentrate on being with them, every minute is so precious.
Thank you again for your good wishes, so sorry about this rant.xx
Oh how very difficult for you, I'm sure you must miss seeing your Grandchildren so much & especially as they grow so quickly.
I find travelling makes me tired so sometimes we split our journey but if not take several breaks on the way down.
I think all you can do is try not to let it upset you as you know you will see them again, you are probably feeling vulnerable so you feel things more deeply, l know I did & still do.
If you are tired take a rest on the bed in the afternoon, as you can relax more but take the little one with you to chat or read to her.
I hope you can enjoy the weekend & try not to let your daughters indifference to your condition upset you too much, has your husband spoken to her about your PMR?
Do take care & enjoy your lovely Grandchildren
Best Wishes
Mrs N 🌺
He did try at Christmas but she got a text message and didn't get back onto the subject.
Thank you for your good wishes.
Best wishes
Marlene
xx
Hi Marlenec,
Know what you mean about grandchildren not living close by. My younger ones live in Peak District, I live in Dorset. Fortunately my son has a holiday place down here, bought after my hubby died, so I do get to see them, but usually only holiday times obviously. I find the drive by myself to the Peak District too much, so when I go I travel either by train, or fly. I also go on holiday in the summer with them, but I know I'm very lucky. My son is very keen for me to see them as much as possible- certainly since his dad died, and also because we were an Army family and all over the place so my children didn't have a very close relationship with their grandparents.
My older ones live in New Zealand, but they were in U.K. when younger- and I do miss them!
Think your daughter may be one of those children who doesn't want to admit that their parent is ill, and not as they remember when they were young. My brother was very like that with my mum, not out of malice, but denial. Despite being a very clever and caring man he just couldn't accept that mum wasn't mum anymore.
Enjoy your w/e as much as you can and concentrate on the positives.
The distance for us driving is ok as we have 2 stops, it's that we're not invited down much. I don't think she will be in denial, just doesn't think it should make any difference, ie at Christmas I'd already said I get too tired walking but we had a one and half hour walk one day and a 2 hour walk the next. I felt dead but I couldn't miss out.
Best wishes
Marlene
Hi,
Yes I did understand the fact that you weren't invited much, and that's a great shame. I think young children miss so much these day if they don't have regular contact with the older generation, particularly grandparents.
When my husband was alive we used to stopover on the trip, but what I find difficult now is concentrating for 5-6 hours on the motorway have lost sight in one eye.
Can your husband not talk to your daughter, he sees you on a day to day basis and obviously knows how difficult life is for you. Perhaps she might be more accepting if he explained your situation to her.
It's quite difficult to talk to her, she's not very understanding and gets quite stroppy. However I'll ask him.
Thank you very much for your advice and help, you have been so unlucky with PMR and GCA. I think it may have been you who advised me to buy Kate's book if so thank you. It is very enlightening. Hope you have a lovely week end. xx
Hi again,
Just think that sometimes coming from someone else it does have a bit more resonance. Some grown up children aren't very good at listening to their parents!
My son sometimes thought my husband was exaggerating his problems, but if I told him the same thing he seemed to listen to me.
Not sure exactly what the thinking behind it is, but as I said earlier I think it's something to do with not wanting to admit that your parent is not that strong infallible person they used to be.
Hopefully if you can get to the Leeds roadshow, your husband will have an even better understanding and can convey to your daughter!
Thank you - yes I know what you mean. We have tickets for the road show! xx
I think you are on to something DorsetLady on the subject of our children's response to our becoming ill or even showing signs of age. My eldest daughter demanded that we go white water rafting for her birthday treat on one visit to Australia ( I did it) and had me climb a 3000 foot mountain via a narrow path. This was pre PMR but only a few years ago. Maybe they see their own mortality when we start to creak a bit. My son is much kinder.
Well done. Hope you got the t-shirt you deserved it!
Think you also have a point about their mortality. Plus maybe something to do with role models as well, my son always refers to his Dad as being the strong one he looked up to, and I don't think he wanted to admit his father's weaknesses (or maybe perceived weakness) in older years. Ironic thing is, 20 years ago my son sat next to his bed all night in a London hospital when my hubby wasn't expected to make it through the night, so he was aware of how ill he was. Fortunately hubby bounced back so I suppose in my son's mind he was then okay, everything back to normal. Trouble is, despite his heart problems, my husband always looked healthy.
Also if you don't live close, and see each other regularly you don't realise how people have aged.
After, and during GCA, I've said to both my children when we've been together doing things - "I can't do what I used to, but I'll do what I can, and what I want, but I won't stop you doing things" and they seem to accept that. So I'll very often sit and have a coffee whilst they do something more energetic!
You have received such good advice there is no need to add to it. Interesting though that you started with a small query that opened a Pandora's box for you and perhaps for many of us! I think as well that while we are on pred we don't always react how we used to and for me anyway I can be more sensitive and easily hurt. I think it was so good though that you were able to raise all these points and be able to share. That's what is so good about the forum- it helps to get all these feelings out and to also know you're not alone. Do let us know how you get on. Xx
Thank you Elizcarroll, it's good to know I'm not alone and the unexpected can happen and everything turns out fine. Wow! The Cayman Islands.
Look what you unleashed Marlenec! You definitely touched a nerve with other mums and grannies. Go well!
I have only just seen this and haven't read all the replies so apologies if it has already been suggested. Why don't you ask the doctor for a prescription for Diazepam 2mg. These should help.
Due to the delights of this system of nesting - who is that aimed at Trenny?
Increasing pred dose for GCA
? Increase Pred dose
Lower Pred dose - Increase Fatigue?
Does increasing pred dose reduce fatigue (exhaustion) for some people?
