So after three months and a definitive diagnosis, I decided to "own" my disease. I actually bought a PMR awareness t-shirt. My sister doesn't like it, nor does she like that I use phrases like "my disease" when I talk about it. I think that she believes that by accepting it as part of my identity, it means I won't fight it. But I don't see it that way. I think seeing it as part of who I am now (temporarily, hopefully) is going to help me get through this.
Do you think this is strange? Here is a photo of me in the t-shirt. I'm holding a fig tree that my wife and I are going to plant tomorrow.
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Bravo Mrs. Nails.... I too have done similar. I've been so upset and anxious about not being able to lose the weight I felt I needed to, in time for my sons wedding in Oct. As we all know, even on a low carb diet, it can still take ages to achieve the desired results.
I felt I'd look really awful in any outfit I wore but I found a beautiful dress and jacket that I feel really lovely in and that's without losing any weight!
I know I'm luckier than many people weight wise but I'm still a stone heavier than I was pre-prednisolone.
I am who I am now, and I'm happy....Happy because my son is happy. Happy because I'm feeling better than I did 6mths ago. Happy because I have people around me who I love and who love me.
So.... the weight will come off eventually, but for now, I'm just going to embrace my curves! 😄
Good for you - being comfortable & loving your dress is really important for such a Special Day.
When my youngest Son got married it was pre PMR & l lost weight in the run up to the Wedding so had to have it taken in (those were the days!) for my eldest Sons Wedding l was post Chemo but l hope one day to wear that dress again on a Cruise 🚢
You must be getting excited now, l know l would be! What colour is your Dress n Jacket?
Isn’t it liberating? I’ve had a good look through my wardrobe and have donated to my local charity shops. I no longer have ‘thin clothes’ and ‘fat clothes’-just those that fit me now….sort of 😉.
Perversely I had significant weight loss a year or so ago, and needed my 'thin clothes' back! Several had gone to charity shops. Reluctant to get a new wardrobe in case thinner is temporary!! There's just no telling................
Oh dear! There’s literally no ‘one size fits all’ for PMR whether it be in terms of weight gain/loss, diet, thinning hair, increase in facial hair, extent of exercise… the list can go on. 🌺
I'm all for raising awareness of this condition as there's far too much ignorance around it.
PMR most definitely changes how we're able to live our lives...for a while anyway.....and we do have to adapt and make changes.
Acknowledging your 'disease', 'illness' 'condition' (it's really immaterial how you refer to your PMR) is the way forward to accepting it, and unless you accept it as 'present' in your life then you're going to struggle to make any progress.
I've had many friends who've had cancer and they've all said that of course the cancer doesn't define who they are, but they all have also said that for the duration of their 'experience' it makes a positive difference to acknowledge it, face it head on and definitely talk about it.
PMR is the same...it doesn't define who you are but it definitely does change a big part of your life! Trying to ignore it or pretending you don't have it serves no purpose. However, sharing your fears, anxieties, successes, little triumphs, and general experiences, does help educate others and contribute to developing a better understanding of PMR.
People can only support you effectively if they understand what you're going through so....who knows!!... if wearing your t-shirt starts a conversation about PMR, then, happy days!
It's probably important to say that sometimes friends and family find it harder to accept these situations than the person with the actual diagnosis. I have personally discovered this and realised that I have to be 'sensitive' to, and mindful of this when engaging with those people.
I personally applaud your attitude though and wish you well..... and fingers crossed for an eventual satisfactory outcome.
Most people, well nearly all people, when they see me do tell me how well I look. The PMR is invisible to them.
I kind of get it that they could be thinking I'm malingering with a made up excuse not to do this or that with them, like we did in the old days, because they remember me as active and outgoing.
We can also be invisible when we need to be. I met up with a cousin of mine, male, who was diagnosed with PMR in his later 50s - a well respected stage and TV actor / director who knows how to present himself as bristling with energy. Below the surface he daily deals with micro managing his own particular PMR journey.
Heck I'll wear the Tee-shirt..... can it be found at the UK Versus Arthritis site?
Provided he would be happy to -many in the entertainment industry are not willing to acknowledge illness - worried out being overlooked for prime parts.
That's a very good point. I'm not so much fighting but "waiting it out." And if stress reduction helps, that too is less like fighting than it is accepting and being patient.
Here's the site. They have a lot of awareness apparel for different diseases. I know nothing about this company, btw. But they did send me the two shirts I purchased. raoufdesigns.com/
Here's the site. They have a lot of awareness apparel for different diseases. I know nothing about this company, btw. But they did send me the two shirts I purchased. raoufdesigns.com/
For the time being I absolutely regard my disease(s) as part of my identity. If acceptance includes finding out as much as I can about it, learning from other’s experience and adapting my life in ways that are most beneficial for me is giving in, I’ll take it. New PMR/GCA patients who join the forum often say how lost they were before they found us which is in great part testament to the importance of belonging and kind of healing in itself.
Your sister obviously cares a lot for you and it’s hard for her to understand when she hasn’t walked in your shoes. You can say/with all honesty, “Been there-got the tee shirt”. It suits you, sir 😀.
I think it's fab. I feel that one of the hardest things for those who are first diagnosed is to accept that a) they have a disease they have probably never heard of and b) more importantly that they have a long term systemic disease, and to add to the shock, that the drugs that are prescribed won't actually cure the disease but will just allow you to manage it. The final acceptance is that it will go away in its own time, not the doctors time frame, not the recommendations from Nice, not your own time frame because it is very inconvenient, but when it is good and ready to depart from whence it came. Try to rush it and it will get very grumpy and will need even more medication for an even longer time to keep it under control. So, no point at all in fighting it, stop worrying about it, accept you have to live with it and the various limitations it, and the medication puts on your life. Nurse it along to keep it contained, and take what steps you can/need to mitigate the downsides of the disease and the medication. Luv the tee shirt idea and if they do a Polo neck version i'll get one (really don't cope with/like wearing tee shirts). If that can spread the word, help with enabling family, friends and work to understand the disease, then that is a success.
Take care everyone and just for a change its neither wet nor frosty (due to change back to normal on Monday though!!!)
Good for you, I think it's a great idea to embrace and acknowledge our illness and illnesses, we have to face things head on, not stick our heads in the sand. 🌞
I personally think that acceptance is an important step to recovery. I truly hate the idea that you have to fight to get better. People used to say this to me when I had cancer - so if you don't get better does that mean you did not fight hard enough or were not positive enough. Very good luck. I am sure you will make a good recovery. 👍
Acceptance is key as symptoms can change daily, so going with the flow seems to be a good defence against anxiety and worry. In fact the flexibility of acceptance is liberating. We have no choice at this time and PMR def has a mind of it's own. One day at a time. Your tee shirt may trigger questions about PMR and that's a good thing. I do find that, because some of us don't look "sick", it's difficult for others to accept that we are, unless someone has gone through it. So little is known about it. We will come out at the other end. Crack on!
no, it’s not strange. I completely agree with you but we are all individuals who can “own” it or not. I own my PMR and also decided not to take steroids, which many people think is mad so I know where you’re coming from!
So many years, so many body wide, multi organ symptoms, so much hunting out each symptom to try to give it a name. Finally learning the culprit behind all of it. 20 plus years PMR, 12 plus GCA. Misdiagnosed for years. If you are early diagnosed be grateful and embrace the diagnosis. You have to know your enemy. It was not knowing that did the most damage to me. It does not help that most doctors don't understand this illness. Here is a link to an article that describes what we are up against: jrheum.org/content/jrheum/4...
PMR and it's wonderful second cousin GCA are not mild illnesses afflicting the elderly. Younger people are also showing up with the illness. It is not mild, it is serious.
Knowledge is power. Wear your t-shirt, know your enemy, and you will beat your disease. And calling it your disease is fine. I do the same thing. It is mine. It does not define me, but it is a part of me. The book of who I am has chapters before PMR/GCA and after, but it is still my book. I am the exception to the rule. I was misdiagnosed for so long I will always have the illness. Sounds like you were diagnosed in a timely manner so there is a great chance you can beat this beast back into the ugly pit it crawled out of.
I like the shirt and idea. I got a Chicago Hardy Fig tree last year, it is doing well. The leaves get pretty big and it's fun to see it grow. We planted 4 Norway Spice yesterday, and I made myself stop and rest..I have felt better the last 3 days than in over a year, so it would have been very easy to do more, but I didn't. My cruise leaves in 6 days. Praying this pain free feeling lasts through that, the plane ride scares me because on NYE that is what set my hip off (not being able to move in the middle seat for 3.5 hours)
Ask to stand up at least twice during that plane journey. Never mind if the person next to you is asleep. I stand in the aisle and just stretch my body by raising up on my tiptoes 20 times. If I’m not in anyone’s way I have a short rest then repeat. Have a lovely time x
”You Do You” as they say these days! Each of us go through our own journey and find ways to navigate the challenges and adjustments that come with have a chronic condition/disease. If it helps to “name/own/share it” thus lowering your stress levels, all the power to you. Love the t-shirt…thank you for spreading the word about this little known autoimmune disease.
As for the bystanders and their responses/feelings about us being chronically ill, I’m afraid that’s something we can’t control. I was surprised and hurt by how some people who were closest to me reacted to my illness. I was criticized for focusing too much attention on it during the early years.
One (former) very close friend took the liberty to discuss her concerns about me and my ongoing research of PMR with my (new) husband, calling me obsessed. Later when I changed my lifestyle and lost weight, she was the one who felt threatened and couldn’t accept the “new me”. She even had the gall to tell me “I used to be her ‘fun factor’’ but now apparently I wasn’t. I chose to end that friendship as it elevated my stress levels and was disrespectful.
I do not necessarily equate acceptance as giving up fighting (which rarely works with PMR). Rather I see it as giving up control of things like disease activity and length and embracing the necessary adjustments to live my best life with PMR.
All the best on your journey and enjoy the fig tree for years to come!
I believe acceptance of reality is the key to health and sanity. Others have stated what acceptance means, and I agree. What no one (I think) has said is that denial is the opposite of acceptance. I think that's what Sis is up to. Denial can be a temporary help, but needs to have light shown on it..what's real is real, and there are no "alternative facts" to PMR, much as we might want some.
We have to deal with this disease in our own way and with any available support. I like the shirt and the positive attitude you have taken.Onwards and upwards.
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