As you ll know I am newly diagnosed TA. We are spending time with our daughter her husband and grandchildren at the moment. After 9 days of running around after grandkids, designing and planting a new garden (nearly done, I was a horticulturist by trade ) going to the zoo, fishing bbq and beach on a pontoon boat and various other things yesterday i hit the wall.
About 3pm I just was so tired brain, body everything, my head was killing me, I nearly dropped 1 year old Madeleine and her head would have crushed like a watermelon.We got back to the unit about 5pm I went straight to bed and slept for an hour and a half. Woke up much better, still a headache but better. I then did my after starting pred thing promised myself an early night and finally went to bed at 1-30am. I woke at 5-30 am and here comes the day.
Easy day today, daughter is at work, my husband is going surfing and I am going up to my daughters to do some cooking and gardening. I am making them a tuna mornay and her favourite minestrone soup. Then later I will come back to the unit and my husband and I will find somewhere to eat dinner
Have a great day Rowboat ( up and down on the stormy seas ....... )
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Rowboat
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You sound so happy in the middle of your lovely holiday with your family, doing all the wonderful things. You know without having it nagged at you that you must learn to pace yourself. You have a serious illness and you simply cannot go on as if your energy is infinite. You have a little pot of energy every day to use and you must prioritise what you are going to use it on and then rest. Have a busy day then a total resting day. The Prednisalone is only masking your symptoms by reducing the inflammation, we all need to bear this in mind. Having said all the boring stuff, you do seem to be in a lovely place, treasure it! You need to drift in the shallows for a bit Rowboat.
You sound like me. I have PMR and some other serious conditions. My whole family has always depended on me for everything and I have to remind them that I have limitations now. When I don't take care of myself, I pay dearly because of the stress of knowing I shouldn't be doing all that I do. It is difficult for them to understand this - including my 91 yr old mother, but it is what it is or my mother will outlive me.
It is a difficult road, but I need to take care of myself first, or there won't be a "me" left. I can't get past 8 mgs of prednisone without a flare. I was supposed to be off this protocol by Jan 2018 - but I know it's not going to happen. Please put yourself first in every thought you have. It's all about energy and we have to spare our energy wisely. If I can't do it - energy-wise, I speak up now!
That is such good advice. Like you my family don't seem to have any idea that I have many problems which affect my energy levels. I have a heart pacemaker defibrillator, osteoarthritis and of course pmr too. My son arrives on Sundays with his wife and 2 lovely boys and I cook a Sunday meal for them all. I really want to say to them , "Look here! I'm not the busy energetic person I was. Cooking dinner for six is really beyond me. How about you cooking my Sunday lunch??" I love them dearly but wish they realised how ill I feel sometimes.
"I was supposed to be off this protocol by Jan 2018"
In whose book? You must have a very clever doctor (or maybe not) who thinks he can foretell the future of PMR in each patient. It doesn't work that way though...
I used to have a (movable) endpoint. Every time I changed my tapering schedule I'd look ahead to see when I'd be at zero. Don't bother any more, of course. I suppose this is one area where that app we were testing could have been useful for me. Or maybe not. It's okay to go with the flow!
Well, as I've no doubt said before, my doctor didn't tell me pred wasn't a cure, so I anticipated being off pred within three months of start! Had the calendar all mapped out.... it was Patient forum which set me straight.
I think it is so important to safeguard yourself. It's so tempting to carry on when you are doing something for others and not save enough energy to be able to look after yourself. I have had episodes where I have been so tired and stiff I am stumbling on kerbs and stairs and I know I am due a miserable nights sleep through being so achy.
You really do have to learn to pace yourself and save enough energy to look after yourself.
You appear to be really enjoying yourself with your family - do still really enjoy yourself but also put yourself first. I suspect that many of us here have been there for others, family included and have always tried to fill the gaps but as you found with your granddaughter sometimes we have to recognise when we are doing/ have done too much. In fact I' m learning ( I say learning as I should have cracked this one by now but constantly "fail" ) to stop well before overdoing it and to practise refusing to do something or not offer to do something, or to say "No". I don't think it comes easy, as I, and probably others, were so used to multitasking, "fitting things in" to an already tight schedule and offering to help out when a need ( perhaps for me , especially older children's needs) were recognised. I believe from what you've said you are on the start of this journey and maybe children, friends and others don't realise that you are suffering from quite a serious illness, not forever, but one that requires rest and pacing in order to keep moving forward. Do take care and for me anyway, when I have explained my limitations I find that folk just get on with the task in hand and I've realised that I am not indispensable!! Keep in touch and let us know your progress. Best wishes Jackie
Thanks for all the replies. I go home in 4 days I will miss them so much. Still got some things to do here. When I get home I promise I will try and pace and sleep for more than 4 hours a night.
I just had to explain to my daughter that I cannot watch my grandson on a particular night that he has football practice. He gets home from school and we have to jump into homework, dinner, getting dressed for football and out the door to make practice by 5:45 pm. He doesn't get home until 4:15 pm. It is much too stressful for me to accomplish this and I refused to do it. So she had to switch her evening job to a night when he doesn't have football practice. If I didn't have all these health problems going on, PMR flares included, I would have done it - but would have been very stressed about it. I can't afford that anymore and had to put it like that to her. They are just too used to our old ways of being "Super Mom and Grandma" and I'm not that person anymore. I have to come first now and I do. I want to stick around for a while and still have enjoyment in life.
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I will miss them so much. Still got some things to do here. When I get home I promise I will try and pace and sleep for more than 4 hours a night.
Going backwards...again. 10mg wall? Advice please
fatigue hits like brick at times on prednisone
PMR and GCA Research Hits the Road!
Fatigue has well and truly hit!
Pain and stiffness hits around midday after taking pred in the morning
