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
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.
I too use a rollator, don't need it all the time, but it gives me confidence.
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!
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!
Hi Elaine. I can't really say anything different to everyone else but I do understand exactly where you are coming from. Since my health problems surfaced I sometimes think I could quietly slip out of the room for an hour and no-one would notice! When people ask 'How are you'? they really don't seem to want the truth so now I just say 'Oh about the same, thankyou' and that seems to suffice! Just wanted you to know that although we are 'only' virtual friends, we will always be here to listen to how you are really feeling and will never 'glaze over' when hearing about your bad days! Sending virtual hugs and smiles, Debbie
Eileen, reading your post I find it so sad that people find it necessary to treat others so badly when they are in such awful situations. I have found that people I thought to be friends have cut me off since I've left work. I have three loyal friends who keep in touch but are not able to go out socially.
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.
I am pleased you have decided to go to your doctor - you are displaying all the classical symptoms of depression and there is no need to sink under it. The NHS is in a mess and the best treatments probably aren't available straight away but there are things that will help.
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.
It's strange how it's possible to see depression in others but do not see it in ourself. My daughter agrees with you and is coming with me. She's been trying to tell me I wasn't myself for a few weeks but I've been snapping at her and others . I felt it was them not me but I do need some help.
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
Oh so fascinating. I love this forum as things keep popping up . . . who would gave guessed others experience the same.
i had a huge outburst the other day as I felt ignored, the family who once respected me and listened to me now make me feel like I'm not there. (But of an overkill?) my wife suggested it was part of the retirement process, getting old, after all I'd had my day (she loves me really).
Never felt happy with the answer but now I know it's Prednisolone or PMR that causes it.
I will tell you the best laugh . . . . After having fallen a couple of times in the road and fed up with not bring able to go 'Birding' and struggling to get something from the supermarket I went and got a mobility scooter. It's brilliant and literally comes apart into three sections, each light enough to out in the boot. It's my 'Golf Buggy'! Why not! Now I can choose to walk or ride and I can get round any RSPB Bird Reserve.
But there is a strange reaction from so many . . . . it's OK to walk beside me at 1mph and hold doors and be nice but the same people won't be seen dead with me on wheels.
I love writer who who uses her rollator like a snow plough . . . . naughty but nice.
The lady with the snowplough rollator had that experience if I remember rightly. Struggling with crutches was acceptable to the daughters but they had a fit when she started to think about a rollator! Somebody else also found her offspring being more knowledgeable about waht she could and couldn't manage comfortably than she did!
Yes, families are funny things but I was having such a struggle with crutches in the end that I just went ahead and ordered one. He's now known (quite affectionately) to the whole family as 'Robin'. My husband didn't know quite what I had bought and on discovering that it had three wheels shouted 'Flippin' heck (or words to that effect) she's got a Reliant Robin!'
I've had many nicknames over the last few years, but it's the first time I've been addressed as 'Del'.