I like to share my experiences, what I do and how I feel.
Whenever that happens it opens up a whole world of replies. It looks like my last post was a step to far for this forum. I am not sorry for what I said, but I will refrain from talking about my experiences in life with PMR.
For those of us that have PMR, you know what it is like, what you can and can't do.
The PMRGCAuk profile says:
"What we do
Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCAuk) is a UK-wide charity set up to provide information and support, raise awareness, and foster research into PMR and GCA. On this forum you can share your own experiences of dealing with these little-known and frightening conditions with others who know what you are talking about; and also gain ideas about ways to take care of yourself and help yourself on the road to recovery. Do discuss ideas you find on the forum with your doctor. Our website is pmrgcauk.com. On the website you can find a range of downloadable items of information, plus our regular newsletter."
I share my experiences and what happens to me, well now it will be greatly reduced.
This is why:
"To everyone who has posted on this thread - this is just a reminder that the forum is about PMR and GCA. While we understand that recreational shooting is acceptable and enjoyable for some people, and a legitimate way to exercise, this thread has taken a direction that is away from health issues to the point where other members are unsure of its appropriateness. If you wish to continue the conversation via private message then please feel free."
Written by
JulianJ
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I am sorry there has been a negative and politicised response to your post. Please don't let it chase you away. I found your post interesting and helpful especially in terms of sport and the disabled. As my world gets smaller I was interested to know if there was a sport I could participate in. Thank you for that information.
Poopadoop - I have played petanque (boules) ever since I retired. Nice, sustained, easy excise. Play twice a week, and gone back to playing in tournaments and interclub after a year's absence. The bonus is joining a club and meeting others.
Thanks sondya. Can you do it sitting? I can't stand for long and can't bend over due to degeneration of discs and nerve damage. I will investigate. Thanks
Investigate indoor bowls as well. I started this a few months back. Lots of adjustments/equipment available for disabled and sight impaired. Plus it is mostly (but not all) elderly, so sitting between shots gathers no weird looks!
Thank you. My family all went 10pin bowling at xmas and I tagged along and used the metal stand thing and they put the bowling ball on it and I just pushed. Was great to be part of a team and have a laugh.
That's great, feeling like part of a team must have done wonders for how you feel and having a laugh, well that is one of the best things we can do. I'm sure that session would have made your world that little bit bigger
We had a friend who had advanced multiple sclerosis. Her arms and legs were uncontrollable, yet she played every week! Amazing woman. We placed a chair at either end of the piste for her so she could sit while waiting for the next throw. For those who can't bend down to pick up boules, there are magnets attached to strings.
And I posted about a rifle I am thinking of as well as the wording of the second amendment. Both of those are off topic for PMR/GCA but on topic for my post.
PMR is a major issue to me, I can't say anything about GCA.
I can't and won't give advice, that is for those much better than myself, I have however tried to talk about my experiences and for me people can respond, I reply to most posts, but not all.
If you have read my other posts you will see that they are all personal, what has happend to me, what I feel etc. You can see from the replies what people think of them.
Many people find that their world is getting smaller, myself included. Talking about what I do to try to keep my world as lard as possible is important. This is the only place I can talk about what I do and how I feel with PMR, most people say "I know" when I talk about the pain or the difficulty in getting up etc.
I like many people enjoy shooting, it is a sport for all, at my main club we have visually impaired shooters and stroke sufferers, I would love to see somebody walk in and ask to join that has PMR, somebody to talk to
Yesterday I had a great day on the range with a friend of mine, we chatted and laughed as we had fun in the cold and rain. I knew I was pushing myself and was expecting payback for my deeds. At the end of the day I got home with a big smile, soaking wet and aches and pains all over, what a great day. To make it better the owner of the range, who due to the wet conditions, had banned all 4x4's from driving behind the firing point, he did however let me drive in front, unload and remove my cart. Then when I was ready to leave, shooting was stopped and I could bring my car back to load it up.
We are a good community and I would welcome anybody from South Wales who is interested to PM me and if I can help I will.
Not a fan of how your 2nd Amendment has evolved but - I won't hold it against you. Ha ha. My dad was a Lt.Col in the Ceylon (Sri Lanka) Army, was a crack shot (rifle) and won many service championships. Mum in the Wrens (Navy). I still loved them.
Julianj, I get what you are saying. However, I don't believe politics belong in this forum, ie your opinion of the United States 2nd ammendment,etc. I could say a lot but don't as it would accomplish little.
We are both in a battle with PMR, and God knows guns will not be of much help when it comes to PMR.
Don’t take the criticism personally, you wrote a post about what you enjoy and found you can still do despite your PMR.
The trouble is once you’ve posted something it become a lottery as to what in particular certain members comment on. We very often veer off at a tangent and you get a lot of comments about all sorts of things. I know it’s predominately a health forum, but we all have lives outside PMR/GCA so it’s natural, I think, that sometimes that surfaces. We wouldn’t be human if it didn’t.
I know I’ve been there, my husband was a life long field sportsman as well as a military man and a gamekeeper so, apart from service abroad we always had guns in the house (safely in cabinets when not in use) so to our family they were something that were always there, familiar but respected for what they were.
However, for most they are viewed very differently and can be a very emotive issue, from one extreme to the other, and you also have to remember that this is a world wide forum, and differences between cultures arise from time to time.
You may have opened a can of worms with your post (been there, done that as well!) but please don't feel responsible for others responses! As Kate said her comments were directed at those rather than your original post.
I, for one, am glad you had the courage to try something you've enjoyed in the past that is so challenging, and that you had such a satisfying result. Thanks for sharing.
My Grandma used to say "No matter what you decide to do, there's going to be someone who doesn't like it."
I hate it when someone is gagged I love it when we go off on a short daft tangent or people do a comedy riff. It is part of the therapeutic effect of consulting this forum daily. I understand that we don’t want to become prey to someone selling snake oil when we are vulnerable and open on here. I don’t understand being told that we cannot describe little physical triumphs we have had such as enjoying a sport. Or share personal information about our lives with PMR and GCA. It feels like a bucket of water being thrown over members each time it happens and sadly that member often leaves or doesn’t post again. I am sorry this happened to you, I hope you all stay.
Been away for the weekend and came back to this - dispiriting really.
I agree, Jane. There are people who have political opinions and/or cultural beliefs about everything. They're entitled as long as they're civil. If they can't do that, their comments should be removed.
Please don’t stop telling us about your life with PMR. If people stopped doing that It would get boring and dictatorial and definitely lose the specialness that this random group of people have organically created. It is a celebration of diversity and making everyone feel included in that.
I post about my real life, it's not sugar coated it's me. I do like reading the comments and I try to reply to most of them. If my posts cause a reaction, that is good, I do hope people accept that it is me posting and it is about me. I don't sell snake oil and never will. I did say if people are in my area and interested to contact me, that still stands and all the information I would give if freely available now on the web.
PMR/GCA is difficult for people, I have PMR and it has already reduced what I can do, but I try to do as much as I can. Maybe I push too hard, Saturday was an example of that, but sometimes I just have to do it. I can't give advice on tapers or any other treatment, but I can say how I feel and why.
My post was about my morning shooting, what I would like people to take from it is that we can do things, we may have to change how we do it, but we can. They may be things that we can no longer do, well then it's time to look for something new.
I like taking photos, but haven't done so for a long time, this is something I'll have to rectify. I'm not a good photographer, but I try or is it I'm trying, one of them!
Keep your world as large as you can, look for the little things that make you smile, then maybe you can look for the bigger things, be open to new challenges. So remember, when one door closes another slams in your face, sorry I mean another door opens
Last but not least a very big thank you to all of the people on this forum that support us. Support can be advice or just a single line comment, they are all good.
Please keep sharing your experiences. I enjoy your posts. I taught weapons school for a branch of the DoD. I won’t go into specifics but I definitely understand how satisfying a morning on the range can be. Likewise I understand how frustrating it can be when I’m flaring so badly that I can barely hold my 1911 properly, let alone get off a few dozen rounds. The world is full all kinds of people but when it comes to disease, conditions and ailments, there’s no discrimination as we all do best we can do to play the cards we are dealt.
The M1911/45APC is heavy and has a kick, I have PMR/GCA and now use a 9mm or 22cal. For our illness I think lighter is better (and cheaper). I am no expert but switching helped me. Also visualize the bullseye as giant cells....just kidding.
LOL I like the visualization! The 1911 is definitely heavy and while it’s my favorite for many reasons, often times it’s not practical for the reasons you stated. 100 rounds later and my wrist feels broken. But I’f I’m haveing a great day I will grab one of my 1911’s, usually the Gold Cup or the SA and make a go of it. My concealed carry is a 40. Effective but smaller and lighter.
Only just read your blog for first time. I was a member of a few gun clubs for many years and enjoyed the outdoor activitity of target shooting In all weathers. You keep doing your sport, it is a hugely interesting one, on the whole attracts a supportive bunch of people getting together, not harming anything or anyone. I was brought up in the country so riding hunting shooting and fishing came naturally. It was good to read of how much you had enjoyed your wet tiring day, we all have to push ourselves at times, keeps the spirit up. Most of us on this site battle each day feeling well below par and reading something a little more jolly than about our aches and pains is good for us. You enjoy.
Julian, I have nothing against you shooting guns. I live in Texas and can carry a gun legally (must pass background and course first). I, also, do some shooting, and I am so happy shooting gives you pleasure. I don't intend to tell you what's wrong with your county, and would respectfully ask you to act in kind.
Telling about your sport and life is fine, but please can we leave out the politics as it accomplishes nothing.
Edward
Ha Julian,
This thread has been a bit of a hot potato, but it remind me of the old saying; “you can please some of the people all of the time and all of the people some of the time, but you can’t please all of the people all of the time.
It wasn't your part of the thread that posed a problem - it was the political discussion that was started by others. I was enjoying your posts - the others not so much. IMHO, those posts should have been identified and dealt with individually - and, I have to say, that is exactly what would have happened on the patient.info forum.
Don’t think it’s a negative response or a political response. Shooting is a very personal preference. It’s not like riding a bicycle. Gun control In the US is an issue but not bicycle riding. This is not the forum for gun control issue type topics. I think that’s only fair that we stick to the protocol.
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I hate not looking like me. A rant
PMR myth busting campaign begins today - The two-year-myth!
