Family & friends understanding PMR? | Arthritis Information
I was recently diagnosed with PMR and I'm not sure how to let my hubby and kids know how I feel. I've always been the "caretaker" so to speak of my family, the matriarch I guess you would say. My husband is the sweetest, kindest man you will ever meet and I have been tending to his needs more so than my own and I haven't been very good at letting him know how sick I've been. My sisters are also not getting it. One of my sisters insists that if I take two teaspoons of vinegar and honey, three times a day I won't have pain anymore.
I have a friend who has had fibromyalgia for years and although I could show empathy, it was still very hard to relate to, until now. I think many times it's hard to understand something you haven't experienced yourself.
Tonite I had to go to bed early (now I'm up again) because of a bad headache and fatigue (yesterday was a very long strenuous day). My hubby was worried. I just told him that I will be fine but just may not be back to my old self for some time to come.
Any suggestions on how to communicate what PMR means to the people you care about
It's very hard to communicate to someone how you are feeling with this disease. Most of the time we look pretty good, so people thing we must be okay. I used to try to hide it, but wasn't very good at it. My daughter could always tell I was in pain, because of the "pinched" look on my face. She felt bad, and then I would feel bad for not being able to do a lot of the things we used to do, or because I couldn't hide it. DON'T try to hide it. Let your friends and family know that you are in pain and just can't do what you used to do - at least for now. Maybe have them read some of the web sites on PMR. The fatigue is bad at the beginning, and I remember those times when I just had to go lie down, sometimes for a long time.. You're right about it being hard to empathize unless you've been there yourself. Thankfully, I have a very sweet husband, too, and he was always watching out for my best interests, even when I was the one wanting to push too hard. Let your family know that you need to take care of yourself (it's your turn for a while now). If you try to do everything you used to, and more, you will just end up being laid up for a few days - at least, that's how it was with me and many others on this forum. For those who just don't get it, I'm not sure how to make them understand. Maybe you will just have to try to ignore the comments of those who refuse to believe that you have a seriously painful disease. Just because there are no outward manifestations doesn't make it any less real. Just be honest with people. I don't know if this helps or not.
Take care, and I hope you get to feeling better soon.
Reni
This is such a tough one mrsduck! I don't think people understand when
we change from who we have always been, regardless of the reason...
more than that, I don't think people undersand chronic type diseases. If
you have cancer or something they see it and expect that it will be long
term. Otherwise, they just want you to get over it! Having said that, I
think it is really importand to keep the communication open and honest
with those you are closest too and not worry about the rest of them. You
don't say how old your husband is or if he is healthy, but he is your
partner... he should know as much as possible and would probably want
to understand and help.
As I so often do, I agree with Reni... honesty! I don't know your
relationship with your sisters, but can you sit them don and try to explain
and ask them for what you need? ie., "I know this is hard to understand,
but this is a serious and painful codition, I am on heavy duty drugs, and
what I need from you is to try to understand that and listen to me and
help when you can, rather than giving advice or expectig me to be my old
self"
I was thinking about mrsducks situation and mine and others here: We
never talk about the fear of this just going on and on and never
recovering... I find terror is a major emotion these days. Anyone else?
pgr555pgr555,
With me, at the beginning, it was not terror but grief, anger and confusion at my old life being gone and nothing I could really do to get it back. It's hard, when mentally you still feel like your old self, but your body just does not respond the way it used to. It was a LONG process, mostly mental, for me to come to grips with this and realize I just have to rethink my life and not worry about who I was, but to be thankful for who I am and what I can still do. One of my very dear friends who is in her 70's talks about the "seasons of life". Well, besides getting older and having gone through menopause, the PMR has added another season of life. If I can't do what I used to do, I will find other avenues of activity and service. For those of you who are newly diagnosed, take heart. I was in this for 5 years. Life does go on. Just make sure you do what you can to take care of yourself as best you can, and go from there. And you are so right to say with family to "listen to me and help when you can...". We've all been used to being the caregivers. I won't hurt to let other people jump in and help us now when we need it.
Love you all and pray the best for all of you.
Thanks Reni, I get the anger, haven't moved to the grief yet. My husband
and I ride a tandem bike. We have an early retirement planned with a 2 year
bike trip... not ready to give up on that yet! I must say I did ride 187 miles in
3 days at the worst of my prediagnosis days, so maybe... Its just that it
changes the cost and logistics if I cant camp.
I know, in the scheme of things it may seem unimportant, but it has been
our goal for a long time!
pgrpgr555,
Wow! I can't imagine riding 187 miles at any time.
You are all very inspiring I must say! Thanks so much for the insights, they are helpful.
I guess what I am right now is angy and depressed.
I used to walk 2-6 miles per day but that went away 2 years ago. Now I'm able to walk about a mile with the Pred. Any more than that and I still get the bad hip pain and find it too painful to sleep without pain meds. I will settle for 1 mile for now. I must say any miles on a bike would be wonderful, I wouldn't need a fan for the hot flashes
You all take care!
Kathy
Kathy,
Before PMR, I used to walk 3-4 miles a day. Then I could hardly walk a half mile without terrible pain. I am back to walking 2-4 miles a day - not as fast as I used to, mostly because of heel pain, but that is slowly getting better now, too. The one thing that has gotten worse is the hot flashes. It's going on 8 years with them.
Hi Reni,
I recently asked my internal med doc about the hot flashes. She said she has some patients in their 90's who still have them now and then. I've had them for a couple of years now. My husband has gotten used to bringing a jacket wherever we go. I'll need the air conditioning on in the car while he freezes to death, poor thing!
I used to have those sharp needle like pains in my heels and I was told to try out New Balance shoes. They made a big difference for me.
Take care, Kathy
Kathy,
Yeah, my PCP once told me that some women have hot flashes well into their 80's. I didn't need to hear that. I probably get 8-12 a day. Thankfully no more night sweats (at least none that I'm aware of). I have to laugh, in the winter-time, my husband also freezes when we're in the car and I need the AC on. Sometimes the whole front windshield will fog up when I hot flash. Haha.
I saw the podiatrist on Monday and got the tape off my arch, then spent on some Super Feet orthotics. They have a deeper heel cup than my other ones, so think they might help more. I don't have the "classic" plantar fasciitis with the sharp needle-like pain. It's more of a diffuse, heel to arch pain that gets worse the more I'm on my feet. I just got some new shoes yesterday - Brooks - and they seem to be helping as well. I forget what brand my older ones are, but they have the motion control thing, and maybe they were just a bit too stiff. I have some older New Balance; I really like them, but they are too soft right now, since my bad foot is also going flat. Thankfully I had a coupon for the new shoes. off, and they still came to . Too bad I can't still do with regular tennis shoes like I could when I was younger. Really have to watch what I wear lately. Oh, to be young again. Not really. I like where I am now.
Have a good week.
Reni
I hope the new shoes work better for you Reni.
You have a good week yourself, you deserve it! We are off to Eugene on Saturday for a baby shower. My husbands youngest son is having his first child soon. I'm not looking forward to the long drive but am looking forward to seeing the kids and grandkids.
Take care, Kathy
Kathy,
Sounds fun. I have a bridal shower to go to tomorrow night, we're going to the state fair on Saturday (and pop in to wish a friend in Salem a happy belated birthdya - she just turned 80, I think), and then a play downtown on Sunday after brunch with our Bible fellowship group. We're going to see Spamalot. Hope it is good.
Maybe you can get to Eugene early enough so you can lie down for a while before the shower. We used to live in Albany and would drive up to Wilsonville twice a week for our fellowship. It wreaked havoc with my back. Glad we're up here now!
Have a good weekend.
Reni
Try looking at the website
butyoudon'tlooksick.com
Go to the page where it talks about the Spoon Theory.
It's an excellent analogy that can well be applied to PMR and other chronic illnesses
http://www.butyoudontlooksick.com/the_spoon_theory/
Kiwilass,
What an excellent article!!!!I think we should all print it out and have our family and friends read it. Boy, does it say to a T what we all go through, probably not as bad as having lupus, but still bad enough. Thanks for sharing.
Reni
great article, I love the theory... wondering if it was for my friends and family
or me
I am better today.i talked to my boss and she refused to let me do any of the
lifting or moving. She actually got upset whe she saw me plugging in my
computer and unpacking my boxes.She personally moved all my stuff! Hey,
someone had to do it! I wouldnt be
any better next week! And I am off for 4 days now
Thanks for the article and have a realxing weekend all.. use your spoons
wisely!
pgrI for one, feel I look horrible now I have PMR. I lost my appetite when I got PMR, and lost weight, which is good in some ways, but my face got drawn and my skin looked dull and pale and I started walking kinda hunched over due to stiffness and general misery. I think I aged 10 years in 10 weeks. Once on pred I look much better in general, reflecting the way I feel better, so I move and walk better and my posture is much better. However, I really feel my skin has changed for the worse and it's not getting better, I'm still pale and tired-looking, esp towards the end of the day, even tho I feel well in myself most of the time. These days, even a minor physical setback like a headache or a missed meal shows on my face! Oh well, mustn't grumble, guess I;m lucky to still have a face!
Kiwilass2: Great article. I may have my family read it one day. Good find!
Chico: Don't worry about the grumbling. We all share your pain. You never know, once this passes you may get a brand new glow!
My skin has been much more pale, dull, dry and flaky with hundreds of broken blood vessels
Anybody else develop a depressed slouch? It's so funny I catch myself in very bad posture and I know it's from when I was in a lot of pain. It appears to be a habit now that I need to break.
Take care all!!!!
Chico,
This is the place we all get to vent! The place where we know others
undersand counting the spoons - glad you were able to get it out! I also felt
I looked really old and worse, the posture and way I was moving, my hubby
kept telling me he knew something was really wrong because I was moving
like an 80 year old. Really made me feel good, huh? I am happy to say that
on the pred I am back to looking and moving much better... Unfortunately, I
think this "aging" disease" takes some spoons we can never replace. I hope
you find that as you continue to feel better, you will think you look better as
well. In the meantime, what can yo do for yourself? A facial? A massage
(gently I know!), Even a manicure or pedicure?
Take gentle care of yourself!
pgr
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