I have just come back from a wonderful but tiring holiday in Cornwall. I am so much better now I am on Tocilizumab but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting a china clay experience and knew I should rest the next day. We were due to go to my Mother in Laws grave nearby and I thought then home - but in fact there was a plan to go on to do three more things. ( I would have been happy to stay at home if I had known) By the third visit I said I really wanted to go back - they were waiting for our cousins to bring out tea - and as we had arrived uninvited I already got the impression the cousins were v. busy with their B and B business - I said I felt really ill but felt very ignored. The rest of the family said things like - your just a bit tired - you can rest up when we get home and 'you look fine' .We were ages hanging about in the hot sun. I thought my husband should have stuck up for me. I felt dreadful and not well most of the next day.
I really find it hard to get over to people that this is a real illness - somehow words like auto-immune don't seem to cut it. My Father is sending me a cutting from the Mail about GCA and I think I will keep it with me to show to them! How does anyone else deal with this. If I was on crutches they would think differently.
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christine2715
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In the 6years of having PMR I have experienced this quite a few times......short of tattooing our foreheads with the facts....I don't waste previous energy anymore....my close friends and most of family understand....although I often get.....I wonder what brought it on this time!😱
It's bad enough coping emotionally and physically with this disease which most folk do not understand. I am told that I look very well so, in other words, there can't be much wrong with you.
I have often commented that I am lucky to be alive which, sometimes does get a reaction.
It can be very upsetting and distressing.
Unfortunately some people shy away from illness especially your nearest and dearest, as though they are in denial.
They often ARE in denial. Husbands don't do well when their wives are ill for all sorts of reasons and children do not wish to acknowledge their parents are aging and therefore less able to cope with illness as that is, to them, the beginning of the end.
Quite right PMRpro. I regularly hear my husband saying to callers on the phone who ask after my health "Oh, she's fine! Full of beans!" (As he is full of hot air I wonder just who is full of beans!" Meanwhile, I am feeble and struggling. It was more so while I was on Pred, less so on Hydrocortisone. Maybe they just don't like admitting to others that their spouse is less than an Amazon?
You've never said a truer word Primarose...although my sons and family do now 'get it', more so since no 1 son employs someone (very part time) who has GCA and has seen how it can affect him - as a result I've been pleasantly surprised just how understanding my son now is, he lives away so doesn't see the everyday of me.
Think you are right when you say your family must be in denial - if they could just understand how you feel.... after all it's not going to go away, which is what they secretly hope for I think. I remember that look of bewilderment as mine had never heard of the illness so certainly didn't understand back then, The fact we keep going doesn't help our case either.
Now my husband.... while he understands, he can be in denial when things bet bad - he just hates to see me ill and can't deal with it.... so double whammy there! Good job we women are strong I say!
I do not think we are the only ones who are ignored when we feel ill, as we often look so well. Most people are not that interested in other people's aches and pains only their own. They may show sympathy initially but it is hard to appreciate someone else’s pain and it can be tiring to be reminded of it. I know I feel quite exhausted sometimes just trying to be cheerful. On the other hand I could be a lot worse off I tell myself.
My OH knows when I give him “the look” and say it’s time to go, we’d best leave. Sometimes I don’t even give a reason. “Thanks very much, we had a marvelous time, unfortunately we do have to go”.
If there’s one thing I’ve learned with PMR/GCA we have to unapologetically be our own advocates.
I've been very fortunate to have understanding and considerate friends and family. For those that don't know me as well, they just take one look at my arms which are constantly covered with bright red "bruises" and they know there is something wrong with me....
Interestingly enough no one has ever commented on my arms even though I sometimes look as if I have been in a tussle with wild animals. Perhaps they think ‘Oh she must have been in a tussle with wild animals’!!
Hi. I agree christine2715, people have NO idea what it is like to have either of these diseases, and I guess, we really cant expect them to. The symptoms are vague, few people have ever heard of the disease(s), and since everybody can relate to being "tired," it's doesn't sound like a big deal; "Okay, you're tired." We have to be our own best advocates! We have to be comfortable standing up for ourselves and "telling" our loved ones and friends what we want and what we need. I am so sorry you had this experience.... it sounds like a horrible situation. Next time, demand to leave. Let them think what they want.
I think because this flipping illness goes on for a while,well years!... People forget we have it,we look ok and even look well with our chubby cheeks, it's very frustrating 😐
Yes agree with Sandradsn the fact that this condition goes on and on and the fact that we often look so well, muddies the water. Some of my friends have forgotten that I have this condition. I agree too that we have to be our own advocates and insist that we leave, stop , not attend etc. We are the only ones who really know how we feel and for me it was a new experience, putting myself first. Don't always get it right but I'm getting there!!
My wife when she was alive understood because she'd had an autoimmune condition for fifty-one years since she was twenty-one and I was her full-time carer for the last fifteen years of her life. I'm a chicken because my G.C.A. has only lasted for four and a half years so far, of course being born with Klinefelters Syndrome in 1947 but only being diagnosed when I was forty-six I didn't realize there was anything wrong with me until the ribs started to fracture and seven went before I was referred to a specialist who recognize the problem from my abnormal height and exceptionally long legs and arms. I didn't feel like a freak I just assumed I was a bit taller than other men. Unfortunate symptom of K.S. is I find it very difficult to get on with people and make friends and another one is I am infertile so Janet and I were just our family. I don't get on with my twin sister can't stand my brother-in-law, haven't spoken to my older brother and his wife since I moved out of their home in 1970. No I tell a lie we all came together twenty-eight years ago for Mum's funeral. Although I am seventy-one now I still look about fifty-five. There are no outward signs of the K.S. or the G.C.A. and I've lived with the Osteoporosis for such a long time that people who know me recognize my humped back and know the walking stick is to help me along because of my fractured spine bone.
If you don't mind carrying a walking stick (there are some pretty collapsible ones on the Internet), people will see you are afflicted. The number of young women who regularly hold doors open for me is quite astounding.
Sorry about the length of this post. Another of my failings is that once I get started typing I never know when to stop.
Yes, families can be more of a problem than an asset - I've found that at times, too. Sorry that you've found that, especially as you now have to manage without your wife. As someone said, they aren't always able to see things from any other view than their own. I think you must feel fortunate to have had your understanding wife for as long as you did. It must be so hard without her.
As with quite a few others on this forum, your health problems certainly put mine into perspective. (GCA since 2016). Reminds me to complain less.
I do agree that using a walking stick does encourage others to be more considerate. I often try to do without mine now - don't want to become dependent on it - but actually like using it as drivers usually slow down to let me cross the road, and I get offered seats on buses and so on. It's a good clue that one is not on top form.
Very best wishes to you too.
BQ
PS: I'm also 71, but don't think I look 55. Maybe before the GCA . . . .
I can relate to how you feel. Even close friends do not understand, after I have patiently explained the illness. No I am not sleepy tired, I feel like I was hit by a bus and so exhausted I cannot get off the couch, except to use the bathroom. This feelings not fixed by a good night’s sleep, but through extended rest until the energy starts to return. Still no clue. So just have to take care of myself and realize some people will not understand, until they have a serious illness. This gives you information for next time. I am meeting with so and so...do I have a way to leave when I get tired? One friend is great about it when we are one on one, but in a group, it is pressure to do one more thing. Now with some groups, I will only attend if I have my own car. Sorry they seemed so insensitive to your needs. That sucks.
Thanks for everyone's advice, am going to my Nephews wedding on Saturday and will take my own car so I can leave early if needed. The Wedding goes on from 12 midday until midnight and I don't think I will manage that long without flagging. What has happened to the days when you got married, had a nice reception and went off on your honeymoon - all in about 4-5 hours!
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