mornin all, thought I could do alittle work on my deck...dumb, dumb.. I think I have finally learned my lesson... I spent 3 days feeling absolutely terrible... Weakness, sick all over... Tried to sleep it off but just had to wait for my body to try and recover!! Not a fun time..
My head is so full of articles re. PMR yet what seems to be a difficult "problem" to have friends understand. Since before I was the one to say "Let's go for a walk or let's go work out ..." Now I can barely walk my dogs ! clean house, cook, forget it!!
Sorry for being down but I know you all understand. Thanks and all the best to all.
Hey Eileen, Thanks for being there. Forget the dust... my dogs (2) chihuahuas shed like crazy !! Could put togther another dog or 2 !! But I really don't care. I do what I can.
Unfortunately can't afford a cleaning person. But that's ok too. Alittle here alittle there.
Trying to get my head around not being the active person I used to be.... I can tolerate the pain but I need to be active... that's who I am or was!
judy, the sun is out hence been doing abit off pottering in my small garden, it is one of my joys in life, the trouble is once i start i find it hard to stop, but have learnt to force myself to take break,hence sitting & having a cuppa & sandwich.like the girls have said most of us were busy active folk till we started on this journey and it is very hard to ajust.as for dust etc erm; they have given rain for tomorow so who knows? just a thought how is your reduction plan going?Best wishes&take care.Dave
The deck is mid clean up and will stay that way until I can't stand it any more. I tried to clean it up with frequent rests etc but it still did me in. I felt fine while I was doing my thing.. and it felt good to do it. BUT the next day I was "dead in the water" to say the least !! I like to sit out there and read or listen to books on tape ( need to get new glasses, not up to getting out there for that) .
Once I tried to start a garden but I'm not good at that.... everything died!
Thanks for your thoughts, Dave. Take care of yourself as well. All the best.
Oh Judy, you sound just like me! Months ago I would decide I had to clean and would be totally exhausted for a few days. My husband does not take over my chores BUT he helps by making me rest and says he just does not care about clean anything compared to my health. Now I think for days about trying to do a task and oh gee it may have to wait a year! Just remember we are all dirty together! Ann11295
Judy, I am 1 year into my second bout of PMR, down to 5 mg and up to working 5 hours a day. Some of this work is Must Do, so yesterday, @ 4:30 ( I take my pred @ around 6 am) I'm walking in 90 degree F (32.2 C) lifting and sweating. And speaking a cadence of "pain, pain". So I reach my limit, go in and drink a quart of Ice water and rest. And forgive myself.
I went through PMR the first time 10 years ago, undiagnosed and untreated. And it took a 1.5 years to get back to almost complete remission. It is specifically the prior experience and hope of remission that keeps me going. With no guarantees, the trend is consistant with some future remission! Hope!
Julian's advice in this thread: spot on!
I've 2 dogs also. 5 if you count the dust dogs. A Big component for me is guilt, and I have lost many friends during this last year. I have been told many times to get over it. "You're hands are not knarled over with rheumatiod!" Well I guess I can't lose what I never really had.
The people Here have been the single greatest personal support that I have had. Not coddling, but personal care, copious time given in sharing their wealth of information to help those of us who struggle. Articulate, intelligent and compassionate. Eileen and Julian, as example of many here,and they are as theraputic to me as the treasured 5 mg of Pred.
Stay here and talk, first just float. Then you will tread, then swim once more! You will.
thanks for your thoughts. I'm not married but it's me who looks around and says Wow I should clean this place up !! But I do do a bit... forgetting how it will have reprecussions on me the next day.
Thank God it's a beautiful day so far today. Just got out of the shower.. shower does me in as well !! Hard to keep myself clean as well !! I do my stretches in the shower and marching to work on a bit of strengthening.
Wow I can't imagine going thru all this a second time after a remission. Your journey sounds challenging to say the least.
I take 4mg in the morning around 6am and then 2mg around 5pm. My days are so very inconsistent. Hard to plaln what I can or should do each day. I get a false sense of well being when I'm sitting for awhile BUT then when I get up to say walk the dogs; I get exhausted very quickly. some days they get short walks, other days a bit longer... Coming back into the house I am most times out of breath and the legs are weak.
Well Dan, be good to yourself. Thanks again for your thoughts.
Judy, I must say that not being able to clean the house was one of the things that hit me hardest. My husband willingly helped but he, like me, is almost 80 so he has his limitations. I bit the bullet and got a charming (and efficient) Bulgarian for a couple of hours a week. They charge me £10 an hour, and it might well be cheaper outside the London area where I live. If you could survive on a minimal say two hours a fortnight I'm sure you'd feel so much better with a cleaner house if you could possibly afford it. I know I did.
Hello judy. i have just log on. been out with family.i just wonder about your taking of pred, why are you spitting your dose & if you are on the right dose to kill pain,i have always taken mine in one dose early morning,just wonder if you are getting the best benifit out of your pred.my/our thoughts are with you.Dave
Some 'friends' - "get over it"!! That's the trouble with PMR, you can't SEE it, so many people think you are exaggerating when you tell them of the pain and fatigue you are going through. (It' all in the mind! I don't think! 😡😡).
We all know of the 'guilt' one feels when things don't get done, but, as my husband says "guilty of WHAT". And really, of what?
I really must add here that none of our friends have abandoned us, thank goodness. We are sooooo lucky.
Hi David, I have received very little direction from MD. I requested ( because I believe the Rheum. did not believe me and he sent me back to my Primary) I requested if I could take 8mg... 4mg in the morning and 4 at night. At that time she said that it was good that I split the dose. The 8 mg seemed to relieve the really bad pain, which I seemed to only get occ. in my shoulders and neck. My biggest challenge and I mean biggest is the fatigue. I MUST push myself to move my legs and arms. My body is extremely difficult to get moving... not because of pain but the fatigue is overwhelming. When I attempted to clean up the deck, whicih I only partly finished but not really, I was wiped out for 3 days. Today I am just trying to get going again. Mostly just taking the dogs on short walks. I need to go to the store but I'm not convinced I really need to go.
I'm now down to 6mg ( 4mg in the morning, 2 at night ) The pain is still at bay but again the fatigue is terrible and depressing.
This all started around August 2014... As you can see my labs were always "within normal ranges" that why the Rheum dismissed my symptoms especially the fatigue. I sent him the article on fatigue being a precursor of PMR !! He called and apologized and asked if I wanted to go back to him. I will not go back to him because I do not trust him....
Well david, take care of yourself. Thanks to y ou and everyone on this site. Evereyone is caring, supportive and I am grateful to have someone to listen to me. Gratefully, judy
Audrey I was never the cleanest one on the block but I did like to do it when I wanted and not have to say I better take it easy!! I was out of life for 3 days!! Today is still some leftover fatigue but I'm managing to walk the dogs and just thinking about going to the store for some food!!
I'm 72 so I should be able to clean my house. I'm not working, single and trying to keep expenses down as best I can'
Oh, I live in the United States. Yesterday I finally gave in and went for a haircut ( a trim ) It was $50. !! I couldn't believe it. Where I usually go is $30 but I just couldn't drive there but I'll go back next time!!
So audrey , you take care of yourself... thanks for your thoughts, I appreciate your taking the time to write to me.
Hi Judy, i can quite agree with you, i was always on the go before this , and i just cannot get it into MY head that we cannot do as we did before PMR, take care and sending a hug.
oh wish my man did not mind about dirt, bless him, but i must admit he does more cleaning now than me.(he has cod) ops brain not working today still fuzzy, but better that i was, take care