For me one of the things I have to work hardest at is acceptance....acceptance that with GCA there are some things I cannot change...and that full independence is not art of who I am any more. I DON'T want that to inhibit me from living fully.....but it is beginning to get me down that people who care, especially family, remind me of my limitations so they do not have to worry about my well-being.
I'm getting messages of 'we'd love to have you but hopefully you will be pretty self-sufficient because we will be pretty busy.' I was going to rent a cottage in the same town where my family lives in Nova Scotia for a month or two. I figured I could listen to my books, walk and rest there as well as anywhere. Hopefully, I would get to see a member of the family occasionally....but I also expressed I didn't want anyone to feel I had to be entertained.....I live alone now.
For me...the reality is don't go....for me the problem....is keeping a small spot of hurt and dissapointment from taking over and getting me down.
My reactionary thought is to plan a trip elsewhere.....of course, to prove how capable I am.
I'm sad....and when I get sad....I have to talk my way out of it. I have to get through the fogginess~and be brutally honest with myself~ to move on.
Sometimes it is a bit of a struggle to get back on top.....but I know it will work out over the next week or so. xo
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Grammy80
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I’m sorry about the struggle for you. I am really having a bad time too. Anxiety off the scale and can’t calm down for days now even to sleep. My journey is so undecided now. Trying meditation but so new and bad at it. Maybe it will click with you. You are so strong and have accomplished a lot on your journey.
You can't be "bad at meditation". It's not something which can be judged. As they say, when you find your mind wandering, gently note the fact and bring your mind back to what the meditation focus may be, whether it's a mantra, or your breathing, or whatever.
I find when the weather is more salubrious than it is right now that walking meditation is helpful. Walking where there aren't crowds of people, preferably in a natural place, by the sea, in the woods, or in a garden, for example, just pay attention to your walking, or to your breathing. Oddly enough I find this suddenly makes me much more aware of my surroundings. I notice birdsong, or the colours of the leaves, or whatever, whereas before I was only mooching along lost in my own thoughts.
When I was on high doses I just took to looking. Looking at colours, things, anything. My flighty mind could jump about from one thing to another, but that didn’t matter.
You must be so disappointed. It seems to be more common than not that those of us with PMR/GCA were often the ones who kept the family together, made Christmas special, made sure everyone was included, and now the Rest of the Family can't get their heads around the fact that now it's their turn to make sure you are still included, to recognise the new limitations.
I hope you can find another way to take a holiday. I remember when my father-in-law passed away my mother-in-law started travelling many places with a friend. The two women, both well into their 70s, went to places like Portugal or the Caribbean, places that she had never been able to visit before because her husband hadn't wanted to travel! And now two widows in my immediate circle take a trip together about once a year.
Thanks so much....I'm going to have to work on this....I don't want to diminish their lives in anyway.....most of my friends have husbands. I so appreciate the support....just got to fill that hole~!! xo I just have to believe it will work out....I need something to look forward to~!!
You never know where you may find a travel companion. Several of my former workplace co-workers used to go on a trip to New York every year, and all of them had husbands who were not interested in tagging along. And you can, if you want, go on tours as a single. When I've travelled abroad it's always been with some one else, but I have observed single people and they are always part of the group and if they have special needs the tour guides are aware and make sure things are managed to include them. In 2018 we went on an Art Tour of the Netherlands, sponsored by the Art Gallery of Nova Scotia, and I wouldn't be surprised if more than half the group were single travellers, couples actually in the minority. We were brought together by our common interest in art.
I am also on my own, my family understand a bit about PMR and GCA, but not much.
I have always lived for my work and not being able to put in the same amount of hours is really affecting me.
I am still trying to be hostess, cooked Sunday roast for 12 yesterday, and over 24 hours later still not recovered from it.
With any chronic illness it’s about acceptance and I’m not there yet, I don’t want it to win. I’m 51 and I can’t give in to it.
When I was really poorly before Christmas I didn’t see a single person for 3 weeks, just me and my cat.
I truly understand how you are feeling, and hurt is hard to deal with on top of everything else. You sound like you are being self caring, and I hope that you have someone to talk to, take care of you
A man in our village went on a cruise on his own when his wife died and said there were so many in his position and the cruise line made an effort to link people up socially that he never lonely.
A cruise is an excellent idea and travelling solo is really not a problem. People are super friendly and there are lots of things going on. You don't need a companion. It's so comfortable too for those with PMR/GCA.
Although one hopes one doesn't have to use them. Hubby as usual got sick while we were on a cruise and his visit to the doctor, where he got a prescription, cost $800. Our provincial health insurance covered the equivalent of a doctor visit in the province, at the time something like $20, and our travel health insurance picked up the bulk of the rest.
Indeed. On our cruise last year my husband had a mild ear infection but my equipment to diagnose was at home. To leave it could have been bad. The doc didn’t even look inside and gave him Ibuprofen, sand said his chest was clear so go away. That cost us $120. A trip to a non English speaking pharmacy on shore knew exactly what we needed after a bit of pantomime. However, having had a tour of their facilities when I could say I was a fellow professional, I was impressed with their ability to deal with almost any emergency, including open surgery. I think that was his forte, not minor illness.
I've been working on this like a baker kneading dough...my conclusions? I can wish and wish but I have no control over others. Does it mean they love me less? NO. I've come to the conclusion that I'm the only one who I can control...a challenge sometimes and twice the challenge while you are tapering for sure! First step for me is to come to this point mentally....second step ...own it without judgement against others, to be at peace with it.
I'm on my way to getting that 'doing what I want' attitude. I haven't decided exactly what that is at this moment. When I saw my therapist last week she reminded me not to be too hard on myself and remember the role the prednisone plays in our emotions.
So, be kind to yourself💗
For me....I know the only folks that really, really get it are the folks on the forum.
Grammy80, you are so wise and your words really speak to me about..accepting my illness (GCA), my limitations, only one I can control is me. ....and now my hair is falling out! I'm a mess and so grateful for your encouraging words. I will keep you in my prayers and know that your decision will be the right one for YOU.♥️ Jean
People like you keep me going...it is truly not that I am so wise...it is reading this forum and taking strength from all of you....then I try to put into action all the support that is here. GCA is the first illness (of a laundry list) that has gotten me to the floor!! By nature I am a survivor but I had to give in to GCA...without giving up! The folks in this forum, just like yourself, show me that there is light on the other side of that mountain. I listen to the pain...the years...the absolute courage of these gals...(not being sexist here) and it picks me up. So many have suffered for so many years and still offer us encouragement...they made it and so can we!
PS It doesn't mean I don't ever shed a tear because I do...I used to resist that but now I find it is pretty cleansing!!! Some times I sound much braver than I might feel at the moment...but then I convince myself. Give yourself a hug and then give yourself a lot of credit.
I'm on 24 methlyprednisolone and weekly injections of Actemra~~my hair is 'hanging' in there but has thinned😶😶...and I have one ear like an open taxi cab door! (Well, I have two ears but only one sticks out) I wear my hair short, but I'm thinking soon it will be shorter.
You are never alone....ever. 👬👬👬👬👬👬👬👬👬👬👬👬 The Forum Rules
Rather hurtful remarks from family - but we do have to appreciate that our children (if that’s who they are) do have busy lives - and also sometimes don’t want to a admit that mum is not who she was 20 years ago! It’s hard, but there’s no point in fretting about it - just show them you can do it.
You’ve already said you would like to be nearby- to see them occasionally but not be “looked after” - so you’ve been honest with them.
There will be things you cannot do, but there’s a heck of a lot of things you can do! And that comes with aging as much as with illness - fact of life!
As you are on your own, like many of us on here, revel in that rather than be restricted.
Do what you want, when you want, where you want -within your limitations obviously - but don’t let outside factors stop you doing what YOU want!
Acceptance is not capitulation- it’s recognising there’s a new format to your life - that’s all.
I found acceptance the most difficult thing. I have always done everything myself and hate to ask for help, and now I have to wait until someone else is ready to help me. The main gain for me is patience, I don't claim to have much, but I never had any before!
Obviously there are good days and bad days, today is a bad day and no one wants to do anything I feel is important, and as you say that little bit of hurt gets you down and the sadness creeps in.
This condition hits most of us at a time when we have finished working and are looking forward to doing things we have always wanted to do and these too have to be postponed, and many of us worry that we will never be up to doing them.
However I also remembering you saying the other day that we are all here holding each other's hands and leading each other through this. I think that is a very good way to look at the forum. Nobody will understand as we do and because of that there is always someone here to sympathise and advise.
Wishing you all the best on your journey, feel free to share your bad days as well as your good ones.
Maybe not but i need to get rid of some frustration and he einds me upby kniwibg ged winding you up!!As long as you keep the decription to sharp pointy stick you should be ok.
Hi grammy80, it is hard to accept physical limitations when illness strikes. I have chosen to live alone for the past 20years and did travel alone a lot before that. I found that people talk to you more when you travel alone and I never felt or feel lonely as I appreciate being able to wander round the house at 3am if I want to or forgo a meal for something more spontaneous. If the thought of NS and just chilling appeals then do that. Sometimes a change of four walls can be very healing and if you can get near the sea then doubly so. If you want to go somewhere warm and just sightsee at your own pace do that. It can be a raw, vulnerable feeling when you feel isolated by tactless comments. Choose yourself like they are and do what makes you feel better. 🌻
That's true. I found it easier to make friends with people when I travelled with my stepmother, we didn't live in each other's pockets, and although we did a lot of things together and ate together we also did things separately, and we both made friends, separately, with quite a lot of people. This tended not to happen when I was on a similar holiday with hubby. The art tour was an exception, I think because we all had something in common. I'd go on a tour like that again if as appealing a destination as The Netherlands were on offer.
I just read your post and was about to reply but I see that scats has said it all. We're all here to support each other. You cheered me up the other day when I was feeling a bit rubbish with your very positive words so I hope you can take comfort on one of your bad days knowing that all your forum friends are here to give you support when you need it.
I'm sure that Gus could do with a cuddle and that might help you get through today. 😻 Things sometimes feel much better the next morning. xx
Going away alone is very healing. Plan well, make huge allowances and bail out plans so there is a safety net if needed.
I do so know that feeling of seeing family go about life, go into life with gusto and not having to think “how?”. I was very ambitious and capable up to March 2017 at 54, able to take on my garden and do hard labour for a day without a thought. Now getting a pot full of compost takes several steps and digging is out of the question. Making plans now has a huge amount of ‘small print’ attached to it. It’s it sooo frustrating, I know.
Has that small spot of hurt been given the megaphone yet to say what it wants to say and cry out?
The strange position of being on the periphery of your family's life takes a lot of getting used to when you've been the mother figure/fixer/planner of celebrations - the glue of a family. Many emotions jangle together in an effort to come to terms with this and accept our more 'lowly' position, it's confusing because we love our families but when we are in need of their understanding and empathy we find they have removed us from their vision to a sort of outer space, still caring, still asking how we are, but not really listening. They are the centre and we are orbiting!
I cared for 4 family members into their 90s for several years, my parents and two aunts; I loved them to bits but if only I'd felt and known then what I do now about the little and large frustrations and pains of growing elderly and frail I would have loved them differently, with more joy and learning, and when my mother said (in her 89th year) 'I would really like to not be here any more, I'm past my sell-by date', I wouldn't have tried to jolly her along but simply said 'I understand'. We learn some things too late. pity there isn't an App for instant transmission from one generation to another!
If I were in your shoes I'd rent the little cottage, listen to your books, write, enjoy different landscapes, skies, colours and enjoy each day for itself - you don't need to prove anything either to yourself or anyone else (they may not notice!) Don't let the hurt grow into a resentment, it's difficult but, as you know, to accept is to free up space in your mind for more hopeful things.
I will be reading all of your replies...your wisdom, kindness and compassion again and again...they all mean a great deal and you have shared such good and positive thoughts. Like all of us...I work so hard at being positive, SnazzyD took a peek inside of me...identify what really hurts .... then I'll be better equipped to move past it.
I'll be talking to myself and reading all your thoughtful words 💗💗
My heart goes out to you with these feelings that I know so well! The young people in our families do have such busy absorbing lives. There are elements of them not wanting to accept that we are less able than we used to be.
I would advise you to elbow your way in. Do go and rent somewhere nearby and don’t be afraid to make the first move with arrangements. I know it feels like chasing our children but it’s our responsibility, we enabled them to be independent human beings. Do you have grandchildren?
The love and care seems to skip a generation, my grandchildren always want me - but they are little. I try not to seem needy and it works out quite well. I always have an independent property. I don’t want to be overwhelmed either. I also bribe them with treats and help. Whoever you spoke to might just have been having a difficult day. Don’t give up! 🌸🌷🌸
I very much agree with SheffieldJane. Be as independent as you can but spend time near your family. Once the grandchildren are past the teenage years they will start treasuring you again!
These chronic conditions are so live changing- we just can’t do what we did and want to do and feel lousy a lot of the time.
I feel I’ve been a prisoner for much of last year -husband working full time sole practitioner surveyor - in flat with few people around who want to befriend Me children who don’t speak to me.....
But now year 3 pmr I do feel better and am coping better.
You will get there. Just do what you are comfortable with and don’t allow others to dictate.
I do textiles - dye stitch draw when well enough so therapeutic.
I do hope you can get away and feel good. Cruising is great - food prepared for you breakfast in cabin if you want at time you want.can get of at destination but don’t have to, ship doctor if needed. Good talks on sea days library massage beauty treatments......
I think it is a great gift to be comfortable with your own company - I love being left alone in peace to do my own thing, even if that is just relaxing with my eyes closed. My husband does in some ways at home and doesn't like being disturbed from his computer, but while I am able to transfer it to most situations he isn't so that when he is in hospital he is irritable unless I go for the entire time of every visiting time because he finds lying in bed boring. I, on the other hand, really don't mind if he doesn't turn up - not least because he struggles when having a conversation at the best of times, but also because for me being left alone to recover is preferable to trying to talk! I want to read or be online when I want to - selfish? Maybe - but it is healing for the soul.
I think that going to your "own" place nearby is a good way to offer the contact - invite them round for a little something and make it obvious you value seeing them - also on your terms not only theirs.
my favorite time of day is early morning. I am up at 5:30 as one of my diabetic pugs is on that schedule for food/insulin. The next 2 hrs till hubby gets up , its just me and the pugs. i can watch news (addicted to that), read, have coffee, or whatever the day brings to mind. Sometimes a cooking spree, but not often.
It will get better. My family live within 10 kms of where I live. We just have to say - hey I miss you and I'm there for them as often as they are there for me. I live alone too and love it, play petanque three times a week and pickleball as well. Lots of going out for lunch, nice to have friends and nice to say goodbye too. I like my solitude. That's me at 77.
..at this point in my life, after losing many friends, my son, many family members, my daily prayer is for Acceptance. I know without God’s help I would be lost.
Love that you write about your emotions, and so well! My symptoms seem to keep a parallel track with my emotional highs and lows.
I live alone and have been trying to avoid the reality of not being “important “ enough to my kids for them to make visiting a priority. I try to remember how my life was when they were little and my parents were aging, but the difference is that my parents had each other.
I do love most aspects of living alone, but it’s hard for people that don’t live alone to conceive of our life. No one to bounce ideas, or plans off of. No one to say/show they love you in a million little ways throughout the day. No one to notice how you are really feeling.
I got tired of waiting for something that wasn’t going to happen , so I rented a cottage last year for a long weekend and invited my children to come for a visit ( actually told them they must!) we hadn’t been all together for quite some time. Best thing I could have done! Neutral territory, everyone prepared two meals, lots to do to keep children busy and happy. I got to sit back with a silly grin on my face and watch siblings being kind to each other, listen to their memories of our life and appreciate our love of one another.
Go for it! Rent the cottage, invite people over throughout the season, make sure the grandkids know they are welcome any time.
That your place could be a getaway spot for them and they realize you are a listening, caring adult might be a great outcome!
I think you are right on point with the neutral territory aspect. People seem to respond much better. We as a large faMily then did it for new years a couple of times. It saves one person being responsible for hosting and gets everyone away from their territory. Good shout.
I interact with my dog more than any sane person should as a live alone by choice. The saddo tbat I am I got an interactive gadget thing for Xmas. I find myself asking alexa everything now. If it starts to feel too weird I will dump but at the moment loving having something to play music on, do questions of the day and some thing to chunter to that responds apologetically that they don't understand😉.
Totally understand! My sister was telling me the other day that she was going to stop all social media interaction. I told her that was what kept me sane these days, my connection to humans through email, Facebook, Skype, FaceTime, when I am hunkered down in my small country abode due to weather or health! Can’t imagine what my life would have been like 20 years ago without the internet. I do understand her fear that it is replacing all the creative things she used to do when faced with boredom or solitude but to those of us limited by our health it is a boon.
It is. I have though limited my screen time on my phone which is my main access. After 3 hrs screen time it shuts off. I can ask for extensions but that defeats the object. I access all my entertainment via the Web... Books on my tablet now radio and music on dot and TV by streaming.
Some good advice already posted. Remember, the hurt comes from within us not from the outside. Meditation is a help, but sometimes we need to rely on activity. Go for a walk, grocery shopping etc. Try to be out amongst other people. I am getting over an inflammation surge and have planned to volunteer at the food bank in a few days. It is always a help to encourage other people and be among the busy volunteers.
You have said a few good things - that you recognise the spot of hurt and disappointment which you don’t want to take over. - That’s it’s a bit of a struggle but you will get over it. . All good things to recognise. The other point you make is that maybe you need to rent elsewhere to prove how capable you can be.
Quite honestly I don’t think that you have to prove anything to anyone- just do what you feel is right.
I think at first just looking at what the family said it could seem hurtful but perhaps they didn’t want you going into anything thinking that you would always have their company when realistically they can’t always give it. The fact is that they might enjoy getting away to visit you , as someone said on neutral ground, to get away from their own demands on them!
I’m sure reflecting on all these things, not holding on to the hurt but forgiving perhaps their insensitivity, you will make the right decision. Just do what you think is right for you at this point in time with no knee jerk reactions based on hurt.
You are worth much more than what you can or can’t do - you are a “human being” not a “human doing “ with a lot to give. Xx
I guard my independence fiercely and I had rather mixed feelings when my elder daughter told me she was moving to live very near to me. Now things have settled down after three months and she has come to understand that I don't really welcome unannounced visits. If that sounds harsh it is the truth for me. It doesn't mean I don't I love her. She takes me grocery shopping and to doctor's appointments, etc. when I need it but I still like to do what I can on my own. I look after my 10yr old grandson on Sundays when my daughter is working and he and I are building up a good relationship which is very rewarding. We are finding a way to a modus vivendi which fits us all.
I think it takes time for our adult children to accept that relationships change and it is a two way street ; they have to understand that we are no longer able to be the perfect providers yet are not prepared - in my case at least - to have everything arranged for us
Dear Grammy80,I can really relate to you feeling sad about those thoughtless comments.It would be the hardest thing for me to cope with.Lots of people have made some lovely suggestions on here for you .I really hope that you feel better soon.Very best wishes Dewdrop456
Thank you so much.... I've always had a tendency to see the stars to the point where some of my family would get frustrated that I was not 'realistic'....well, I am but I'm still going to try to find some bright spot!!!
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A bit about cortisol levels etc
Progress and a bit of fun 
I'm so flipping sorry 
Tapering and struggling 
