I sometimes think that I'm invisible
Posted , 10 users are following.
I think I'm either the most boring person alive or I've become invisible. No matter if I'm writing to or talking to someone I don't often get an answer. This was never a problem before pmr so I must have really changed. I'm sorry for the moaning but so many things have gone wrong I can't keep up and I'm all cried out.
i guess I'll just have to put up with it but it's a pretty lonely place I'm in at the moment
2 likes, 50 replies
tavidu elaine_19679
Posted
tina-uk_cwall elaine_19679
Posted
But let's be serious for a moment, a lot of people who are Ill or not well complain that others go out of their way to ignore them. It's almost as if they're afraid that if they ask you how you are and you tell them, they simply won't know what to say.
having said all that, when my husband takes the Dog out for a walk I often sit down and have a good old cry. And it's sometimes a completely selfish cry, I say to myself, if I feel like this when all I have wrong with me is PMR how am I going to cope should I ever be seriously ill, etc, etc. you know what else I do? I often talk to myself, that way I have to answer! I also pop the music system on and sing and sort of shuffle around to the music, that cheers me no end.
heather39822 elaine_19679
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Mrs.Mac-Canada elaine_19679
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I allow myself my own little pity party every now and then and cry my eyes out. After that I straighten myself out and tell myself that, despite what other people might think, I am doing really well and I reward myself. For me that is going somewhere that gives me peace and calm, like by the river or in the forest. For others it might be shopping, having a great meal at your favorite restaurant or going to the spa. We do deserve it you know.
We are not invisible but need to put ourselves out there a bit even when we'd rather hide. A big smile and friendly exchange goes a long way. Happy, friendly people attract other happy friendly people so keep smiling and I hope you feel better soon. Hugs Diana
Nefret elaine_19679
Posted
I got annoyed and began simply not giving way to the visible ones - if they moved in front of me I ploughed straight into them - naughty but very satisfactory. I couldn't keep it up for long though, I'm not the combative type so I developed my current strategy. I now plough straight into them still, but I do it with a beaming smile which causes total confusion!
constance.de Nefret
Posted
I have never really had any unfriendliness when using it. I just bellow "excuse me please" very loudly and give a tremendous smile when people turn round - it must disarm them!! They nearly always apologise and smile back!
MrsO-UK_Surrey elaine_19679
Posted
Try and meet up with a favourite friend for a coffee and a chat and do ensure you have a little walk each day, even if you can only manage a very short one. The exercise and fresh air will help to gt those feel-good endorphins circulating.
Are you in the UK - if so whereabouts? There might just be a local PMR/GCA support group that meets up in your area. There's othing like sharing experiences with others who understand exactly what you are going through.
Take heart - although life-changing for a while, it isn't forever like some life-long conditions....you will get better.
EileenH elaine_19679
Posted
I know quite a few people have said PMR showed them who their real friends were! When my husband had cancer 20 years ago I realised there weren't very many - people used to cross the road rather than meet me and have to speak to me. Even my mother-in-law (who had a granny flat in our house) decided he wasn't going to recover and literally turned her nose to the wall and died. And my own mother and brother never visited us - "it upsets us too much to see David looking so ill". Well - bully for you, how do you think I feel?
It is pure and utter selfishness on their part and it stinks. If they are ill they will soon whinge that people don't care about them - without ever thinking that they were the same.
However - if you really do feel that low then do talk to your doctor about it. PMR itself causes depressive mood and pred can also have quite major effects on mood. There is medication that will help to some extent and it is important to recognise that that may be necessary.
As the others have said, there is this forum with plenty of people inthe same boat and the other PMR forums are also a life-line.
use this link
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
to find a post with links to the other forums - the one at forumup in particular is like a big virtual support group where we chat and joke and put up photos of the garden, grandchildren, pets and holidays, not just ask questions and get answers. MrsO mentions the real support groups - this forum works for those who can't find one or who need an ear inbetween. Some of us have become friends as a result because you find people who live within striking distance.
Do come over for a visit - a post is never left alone for long!
elaine_19679 EileenH
Posted
lately I've not wanted to anyway as I am having feeling of dread, have no motivation to do anything and crying for no reason so I've booked an appointment to see my GP.
Because there are so many carding, understanding people on this site who are kind enough to throw a lifeline, as you say, we always have someone who will listen For a while I lost sight of this so thanks to all for reminding me.
im just about to take a look at the link you sent Eileen so thanks again.
EileenH elaine_19679
Posted
And anytime you need to talk then come on here or go to the PMGGCAUK northeast forum at forumup - you will have to sign up which takes a day or two but there is almost always someone around as there are night owls and people all over the world there too. It is different from this forum, much less formal and with spaces to "chat" and tell jokes and share photos and stuff. It isn't quite the same as a real person - but the next best thing.
elaine_19679 EileenH
Posted
ive looked briefly at the link and will get signed in tomorrow. Sometimes it's just a chat with someone who feels the same way that makes the difference..
i can't remember the last time I had a good laugh and that's not me!
thank god for these forums and people like you .
thanks
linda83143l elaine_19679
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elaine_19679
Posted
i too am quiet and have always been hesitant about speaking up but still felt involved and accepted. Now it's hard and just lately I'm crying at the slitest thing even in public which is rather embarrassing.
my patience has got up and gone which used to be one of my virtues, let's hope it returns one day and my hair is a fuzzy mess which makes me look demented!
well you've definitely cheered me up, I've had another cry, talked to my mom whose 92 who said, "you're not good at moment are you, don't get worrying about me, look after yourself"
ive taken all your advice and Warm thoughts and will work on the beaming smile which hasn't been seen for a while, and go as you say forwards and onwards.
thank you so much
hugs to all
Elaine
pat38625 elaine_19679
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constance.de elaine_19679
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