I sometimes think that I'm invisible

Hi elaine, please don't feel alone, this has been happening to me for years even before I got PMR. I am now in the frame of mind that if people treat me this way they are not worth speaking to or even knowing. I have no idea why we are sometimes treated like this, perhaps its because we are usually the quiet ones so when we do actually say something people assuume its not worth knowing anyway. It has ceased to worry me now but you can always put a message on this forum and I willl answer. Will be thinking of you. Dave (tavidu)

Oh Elaine, I'm afriad I'm one of the loud ones and being a former journalist I know all about making questions as opposed to making statements, that way people have to answer me! 

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.

Hi Elaine. ..you are far from being alone in these sentiments. I remember my mother, after coming to live with my family, saying she felt ignored by our friends; and an older friend a few years ago telling me she felt invisible when in a restaurant. I have reached their age and understand perfectly now. I sold my house on Friday (how's the PMR going to handle the ensuing tumult to my life heaven knows) and am buying a cottage in a retirement village, where I will live in a like-minded community where those around me will also have aches and pains! And we'll be visible to each other. That's what's so great about this forum: we're coping with PMR together - and we're here for each other. Chin up, forwards and onwards!

I'm sorry that you are feeling so alone.  I think sometimes when we aren't feeling well it makes it worse and with PMR that can happen quite frequently. I also find I'm much more emotional and have to acknowledge that it is the PMR that's crazy and not me.

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

I can see you really well, Elaine, and I can feel your hurt.  I recently had to begin using a rollator as my mobility is now so limited (nothing to do with PMR or GCA) and I found that I, too, suddenly became invisible, which was odd as I'd been perfectly visible on crutches!

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!

Elaine, most of us will know exactly how you are feeling, having been there, done it and in most cases, got the t-shirt.  Our emotions are all over the place when we have inflammation in our bodies and to take steroids on top of that just compounds the issue.

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. 

It isn't just the PMR - I think people have become very selfish and in some ways the digital age has made it worse. Something that infuriates me is sending an email and it not being acknowledged - especially when it included something that in the "old days" would have been seen to require a response.

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!

You are not alone, we on the forum are here for you xx

Thanks so much to everyone, I guess the last few weeks have caught up with me. I'd have thought after 13 months I'd have learned that this happens. I know we all have other problems as well as the ones we all know and love so much, 

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 

Elaine that is other peoples problem if they ignore you or don't answer you.  Some people are in their head all the time, tunnel vision, tunnel thinking or just caught up in this rat race.  So please take heart, chin up, chest out and move forward.  Don't be too hard on yourself, just be gentle and kind to yourself.  Remember you are not always going to feel this way.

Lonely, on this Forum?!  I have had PMR for over three years and it is only by accident I came across this site about two months ago.  I've never been lonely since - there is always someone who will listen. If there is no-one else around try smiling at yourself in the mirror, that makes me laugh (sometimes I look 90, but am I pleased when I look 60 odd - I'm 75!!).  Keep smiling!