UPDATE thank you so much everybody who's responded for all your kind words of encouragement and support and practical tips. I'm trying to answer everyone individually but there are so many posts it's taking time, so forgive me if I overlook something. I knew I could count on my Tribe!
I know I'll buck up, I'm resilient and all that. I need to phone a friend, get outdoors, and do the things I've posted about before (9 things that make you happy).
I've got a list of nagging tasks to get through that I've put off for too long so am trying to be disciplined and crack on as nothing beats ticking things off lists.
But I couldn't resist dipping in here to get wisdom and insight from the room and feel better already being 'in the room' and connected to people who 'get it'; who know what it's like when you're in pain and sick and tired of being sick and tired. I feel I'm missing out on the summer that's finally showing its face.
So, what's your favourite go-to activity when you're feeling a bit fed up? or advice for me?
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tangocharlie
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Hello dear tangocharlie 💐We all have times when things aren't great and I'm sorry you are going through a valley 🌹
I enjoy gardening. Just being outside is a boost. Perhaps you need a little break and a rest. We haven't had much of a summer and I think this can affect the mood.
Connecting with friends on here is a good place to be.
Being unwell and on meds isn't pleasant. Try not to set yourself unreasonable goals. Each day is different. Just do a third of what's on your list.
For me when feeling PMR depressed and physical things are challenging…‘I get out a jigsaw, you have to like them of course, but I love the colours, angles and actually feeling achievement as it gets filled in. It is absorbing too (for me) There are some nice Van Gogh’s when you can feel his brushstrokes, and I also go for seascapes. Whatever is joyful in fact as that is what you need in those moments
I totally agree with you😊 and you have made me see doing puzzles in a slightly different way too! I also find tidying up a cupboard or wardrobe satisfying too and can get lost in the moment.
Thank you howtotaperdown for your reply. I hope you are having a good week 🌹
yes had a flare so did get a jigsaws out! great to achieve with something that doesnt really matter, rather than worrying about managing PMR and pred! a wonderful distraction for me, bring back the joy
Well I'm glad I don't have a garden because I can barely pull my socks up let alone stubborn weeds. Id be going for the wildflower meadow look. I'm feeling boosted today by seeing a fantastic angel of a physio whose wise words and practical tips have really helped.
That's great to hear you have a boost and help. I hope you make good progress, Tangocharlie 🌼I pour boiling water over the weeds and this helps. Other weeds I just pull up. It's tiring work and I can't be doing it for very long. But I so enjoy the garden and accept I can't do what I used to do but I try and enjoy what I can do.
Did you know it’s somebody’s job to do the jigsaws given to charity shops? I was talking to a woman who does it in a local charity shop and she loves it! Not sure if it’s a paid role though, maybe a voluntary one 🤔. Maybe it’s not something that happens in all charity shop(hence the missing pieces) 😊
I like the odd jigsaw for the reasons you mention but am rubbish at them, wheher it is lack of practice or my rubbish eyesight idk. I think I'd rather be reading. I've got a big stack of both to work through but there are so many other things onthe To do list first. Perhaps I should set myself a cut off time say 5pm and then have relaxation time
I do use Borrobox for audio books but I get Playaways and MP3 audio books from the library too. I listen to those in bed and fall asleep listening. I wake up at about 3am and have to rewind to follow the storylines!
Have you read the Cazalet Chronicles by Elizabeth Jane Howard TC? They’re a real treat! 5 of them! I read them in May/ June. They really cheered me up!! They have everything you could want in a book. Her writing is eloquent and beautifully written. Just a thought. Although sun has got his hat on for you at the moment… he’ll take it off very soon. 💖🌈
Summer's here in Canada too and I feel the same. Favorite go-to is difficult because it depends on what back muscle, rib, etc. is deciding to act up today. Right now in much pain, but going to Walmart with daughter and the gkids and after that I may come home and crash. My favourite go-to is a road trip, because I can just sit there, put the heated seat on and chill. It doesn't take much to thrill me at this point. Reading and TV take up a lot of my time. I always feel like I'm wasting my life away, but also glad to be able to do as much as I can. With PMR and 10 compression fractures, I'm really grateful to be doing quite a bit. I walk with a walker, can do the stairs sideways and one at a time, cook, bathe (precarious at best). That's about it tango. Cheers to you.
It's the compression fractures that are getting to me now. I'm trying to research, particulalry the ROS resources and the ifnromation pack they sent me, to prepare for seeing a specialist physio next week and then the osteoporosis consultant re starting the Romo. Everything takes so long, it is now over a year since all this started and it's taken all this time to get anywhere. But at least things are starting to happen. I also keep reading descriptions like 'chronic pain' and never thought this would happen to me at the age of 63. So there's the Kubler Ross curve thing and I'm flitting between all the stages between denial and acceptance. I know the answers in theory; focus on what yo can do not what you can't. accept sh*t happens and we are where we are, but all that doesn't happen instantly does it. Thanks for the practical tips, heat does help even in summer, so does an ice pack. Also thanks for letting me have a moan. Enjoy the trip out, hopefully to a cool place! x
Same. The fractures are getting to me. What us Romo? I did the 10th fracture about a month ago. Had a Zoledronic infusion last October and wondering if it will ever kick in. Don't even know what I did to cause it. Doesn't take much. Osteoporosis sucks. I get tired of researching. I'm not in denial, but detest focusing on everything. If I wasn't part of our tribe, then I'd be lost because the doctors know little to nothing and make you feel like a ruddy hypochondriac or drug addict. Thanks for your rant. Guess I needed one too. 🌹
Romosozumab, aka Evenity, a new biologic drug that builds bone mass rapidly for those at severe risk of or have been diagnosed with osteoporosis after bone fractures. You take it for a year then go on to annual Zoledronic acid infusions. Yes it's good to rant. Doctors know so little. I saw my GP last week and he said 'but your DEXA was fine'. Exactly! I said. Which is why I'm drafting a post on how you can't rely on DEXA scans etc. Keep going x
Ive just had a very useful appointment with a physio who specialises in spinal fractures. Basically, the gist of it was slow down, it'll take time, you can't rush the healing, be kind to yourself, rest, apply heat pads etc. Exercise just a few minutes at a time. She was saying so little is known about these fractures and probably because loads of people get them and don't know what they are or why they happened. I will be writing another post on everything I've discovered including how DEXA scans don't really tell us much. So dig those heat pads out and relax in the sunshine while it's here x
Lol. Married to my heating pad. I think another fracture has happened just this week. Xray on Friday. If so, this would be 11. They won't cover Roso because I'm already getting annual zoledronic infusion. The first was last October. Hopefully it kicks in soon. To pay for Roso it would be between $800-1000CA per month. Osteo Specialist asked if I was rich. I agree with the physio. Not much else can be done. Not that I do a whole lot, but grateful I can walk, cook, clean a bit, bathe (which is very precarious), stairs. Thanks TC.🌷
I agree and understand, it is very hard to change your mind set and accept that some things are no longer possible. When you feel depressed, remember it’s the drugs doing that, not something inherent in you. Try to go with the flow and not fight it, and if family and friends don’t understand, just say F You, I'm ill! (I think preds make you Bolshie too!)
I know steroids do affect moods but I'm lucky in that they don't generally for me. Happiness lies mainly in the mind and our thought processes and how we react to things which is why I've found learning about mindfulness so helpful. I've bucked up a lot since writing this post a few days ago but it was carthartic doing so and I've really felt the love from all the responders, it helped, I knew it would. You're so right about not fighting against things, let go of the rope, I've gone back to my mindfulness books to think about acceptance and dealing with diappointment and anger
I'm also researching walkers/rollators. Trying to find one that is sturdy (4 wheels better than 3) but also foldable so it can go in car boots, trains, planes s etc and also has a basket of some kind for carrying shopping as I can't lift and carry things any more, not even a light backpack. It seems you can't have sturdy, portable, comfortable and useful all in one so a compromise will be needed. Or just buy different ones for different occasions. Ans if one more person says I'd be better off trying to walk without one I'll smash them in the face as the specialist physio says for now at least it is essential to use one and keep as mobile and safe from falls as possible
Yes! My gawd girl use your walker. I have a 3 wheeler for in the apt. Inside because they do tend to tip. My 4 wheeler was $130 half price and for out and about. Folds up, lightweight and has a seat. Adjusts tall enough so I don't have to bend over to hold on. The brand is "Drive". At the stores I just lean on the carts.
Look at you! Girl racer! Looks good but for me I need one that can carry stuff too eg shopping as I don't drive. A seat might be useful but generally there are seats and benches around when I need one. The right height is crucial too, the first one I bought in a charity shop and its slightly too low. The 3-wheeler is the right height but less stable and I went flyng when the front wheel got stuck in some cobbles. I so feel a bit like a great grannie, but then I am a Great aunt so I should just learn to laugh and say so what to myslef LOL
Mine came with a shopping basket and seat. There is one with "off-road" wheels which deal with cobbles. If they run on cobbles, they will deal with anything!!!!
Aha, that sounds like just what I need then, customisable for different occasions. I'll investigate more. Thanks, you really are a mine of information! When I was in Llandudno recently I saw a coach being loaded up by the driver, obviously one of those coach holidays for older people. The boot was just full of rollators and portable mobility scooters, I wish I'd had a good look! If I see someone using one out and about I usually stop and talk to them about it. Quite often I find myself adjusting the height for them as they just get them delivered and don't read the instructions or get help setting them up and so don't know they probably need to adjust them so they stoop as they walk.
I haven't needed it as it turned out though when I bought it I was still struggling badly. They feel OK though and I think they are designed to improve posture - have you looked at the company website and all the bumpf. I knew I needed something that would cope with cobbles - my husband found his terribly uncomfortable to use even in the village and lots of areas where I live are cobbled or gravel paths even if you avoid the grass!
I met a lady in town with one just after I got mine and she said how much she liked using it - her husband was a doctor and he approved of the design. But above all - people say they are happy to use it, don't feel frumpy or "disabled".
I was talking to the specialist physio today about walkers/rollators. She said for now at least and probbly for a good while, I need to use something to walk and a rollator is proably better than using walking sticks. Not to lean on it though as that creates tension and pain in my shoulders. So maybe the ergonomic handles would stop me doing that. I will do some more research adn she's recommended a council-run centre in south Leed that displays all kinds of mobility aids so to go and talk to them. Plus there are few charities mentioned on the ROS website.
"The off road walker is equipped with forward-facing handles so you can walk with an upright posture and maneuver the rollator walker better. This prevents you from hunching over when walking, which eases the pressure on your back and shoulders. "
I bought my rollator from Germany, far more sturdier with off-road wheels so can go on grass easily etc , it has a seat on and folds. I bought it off Amazon so try on there.
Good luck
Wendy xx
Ps I too have osteoporosis, currently nursing rib fractures after falling in garden
That's what I need. Off road. I find pushing my rollator thru grass or gravel, may actually be the cause of some of these fractures. The timing of their occurrence seems to coincide.
Dear Tangocharlie, 100% support your last sentence . Please geta rollator asap and don't overthink the options. It will just make your life easier and safer. In my experience you can get one that ticks all the boxes you mention. For example, mine is an Evolution, Trillium , 4 wheel etc. I don't know about cost for UK ( I am in Canada ) but I was assesed for need, it was measured and adjusted to fit me and the cost was minimal. I don't have half the spinal issues you do but have found it liberating and can only imagine how much help you will find it. ! BTW I also luxuriate in the reading time I now permit myself without ( or very little ) guilt. Best wishes and good luck.
Hello Tangocharlie, sorry that you are feeling low, sending my best wishes. I admire all you long termers, cracking on and taking the time to support others as I am aware you have done, so thank you.
I am in the midst of a bit of a crisis, covid, emergency eye issue and this forum has made all the difference in helping me feel less isolated.
Just one thing off that list today will do and a reward for being fab.
Thank you for those kind and encouraging words, much appreciated. I'm going to say to myself, crack on, give it a couple of hours then get out to the park. Hope you feel better soon, is the eye fixable?
Hello, my friend 👋. You have lost your focus, it seems. Remember how you felt when you accompanied your friend on the final mile of her charity walk to Hadrian’s Wall? What might help you to re-capture the feeling of fulfillment? Try this:
[Get a sheet of A4, write a list of six of the nagging tasks, pin it up or prop it somewhere and then ignore it until tomorrow when you WILL choose the simplest of those tasks to complete (bet you feel better already 😉). The next day (or the one after that) repeat. It’s too hot to attempt anything physically demanding and you owe it to yourself to find a shady spot and reflect happily on the fact that you have crossed a task off your list. Give yourself a pat on the back.] Repeat [ ] but remember … there’s always tomorrow and conversely, as my mother used to say, “Never put off till tomorrow what you can do today.”
👍😆 the trouble is some of the things have been on the list so long they have now become urgent. I know the time management theory (I used to teach it LOL) of scheduling in the important over the urgent, build in the rocks etc. I've got a 'Ta da' list where I write down the things I have done and the progress I've made. I'm going to focus now, crack on, give myslef a few hours of progress and then I'll feel better for having done something useful. Ta M x
You’ve inspired ME now! I’m definitely going to make Ta Da! lists. The first thing I’m going to belatedly list is, “Got out the vacuum cleaner”. I’ll ignore the fact that it’s not moved from the corner of the living room for two days 😉.
I didn’t give consideration to the pain you’re in and to the years you’ve suffered. To say you’re a trouper is an understatement and you deserve time out. When you take possession of a rollator/walker you must personalise it appropriately ( or inappropriately). We could have a forum competition.
Ha ha I LOVE that idea, like the character on Benidorm, I need to Pimp my Ride! Yes I think I'm dealing with two new things to add to the PMR and the sight problems. First the constant pain, the fractures don't just affect my back but all the organs are now squished too, so my tummy hurts, bladder and bowels being pressed on, I can't carry or lift anything, can't walk much. Plus as this is a permanent thing I'm trying to get my head round 'things will never be the same again' and dealing with all the stages of grieving for the old life, shock, denial, anger, bargaining, depression and using all my mindfulness tools to get to acceptance. I'll get there but it will take time and I'm finding it tough. This time next year I'll do the Marathon in a month with you - on a rollator if necessary! x
😁 When my friend’s MS progressed she bought a purple rollator (remember the poem, “When I am old I shall wear purple”?) and stood proudly out from the crowd accessorising in various shades of that colour.
TC- You really are among the strongest, bravest most determined of women (don’t you dare deny it) and it’s no shame if you want to have a good scream- in your head or out loud or under the duvet. I would be in a heap having to endure all that’s affecting you and hope that you have kind and knowledgable professionals taking care of you.
I’d be proud to have you at my side in next year’s fund raiser- actually or figuratively. We could BOTH wear purple 😈😈.
Thank you again. I've bucked up a bit since I wrote the post last week. I went back to some of the things I've recommended to others in the past like idenitfying your emtions, journalling your thoughts and then formulating a Plan B. If and when I have time I'll do another post on What to do when you;re having a bad day which will incorporate some of the lovely suggestions I've had on here. Now I'm off to Google purple rollators ... and red hats that don't match ... X
I’m pleased to hear you’re feeling a little better. I’d be very interested to read your recommendations, etc. when you’re up to it. Keep going, TC. You are an inspiration to others.
Read all these responses, everyone is so supportive and humorous, it’s brilliant. But you’re amazing, TC, I know you’ve cheered me up in the past. My observation of the day is how we are now referred to as “having a fall”. No! I fell! Don’t know why it irritates me. (Yes, broken bone in left foot, metatarsal stress fracture - ie break- in right. ). Oh, and bruised rib. Ah well… yes, outdoors is good. X
I love to listen to Dr Mosley RIP when I feel down. He makes me smile everytime. There is another podcast called This is Love which is wonderful. episode 2 being my favorite!! either wander around the house doing tiny chores or sit outside and listen! Hope you are feeling better soon!
Funny enough, catching up on his 'Just one thing podcasts' is on my To do list! I think they did a tribute day recently but I was away. His books have helped me so much, got me on the low carb way of eating etc which has probably saved my life. Thanks for listening x PS I want to get back to yoga and pilates I just need specialist advice on how to modify the exercises now I have the spinal problems.
Was thinking about you yesterday, my sister mentioned Cromer she and I would love to go to the “End of pier show “ but neither of us would be able to get up the steep incline at the start, your hotel was nearby. Sorry you are feeling like me, can only manage crosswords today! Have considered a rollator, would probably sit on it more than push it! We keep marching (joke!) on.
Yes, over the years have battled with those railings!....other people a lot older than me and my sister (with RA) going easily past......but if I sat on a rollator arms and legs out..wheeeeee down the slope!Yes, Cromer is lovely, often wins award.......
Hey tangocharlie, I can see you are not going to be dissuaded from tackling that list today, so just for today, acceptance and work through some of the quick wins. I can see it’s been a really tough rollercoaster for you. Connection is key to emotional wellbeing, stick with your tribe. xx
Ha ha I've just done an hour and feel better for focusing. Now I want an ice-cream a a reward but luckily the shop that sells them in the park is now closed
So sad that you are going through one of those phases that we all have from time to time but absolutely horrid whilst in the midst. I've found the best way is to lean into it and use the time for things that one would otherwise put off.
I read .... anything that I can get my hands on but especially something comforting, i.e. Agatha Christie. Just read The Marlow Murder Club - great. Books that talk of a place and time I understand. Any of the old Dorothy L Sayers - Gaudy Night is my favourite); Marjorie Allingham; Ngaio Marsh etc. - especially P G Wodehouse - love his nonsense. Then I drift off into another, more comforting world. It's amazing how immediate problems are at least pushed to the back for a while. It won't solve them, of course, but it helps.
Then I try and make myself do something that I am always putting off, i.e. drawing/painting which I have put off for the last two years at least - why? Because there are other things I 'should' be doing or I have been too tired. Then I realised that you have to work at getting back into a skill that you used to have so that's another reason to do it.
If I am able to tick even the simplest thing on my list off it becomes such a big bonus!
You are one of those who take the time to give the rest of us sound advice and a boost when we need it; I hope the contact and maybe some of the ideas that have people have put forward help - even a little bit.
I'm so humbled to hear yours and everybody's encouragement, just when I need it, thanks. I've been doing a big sort out recently and got rid of some clutter as just splurged on a gorgeous new set of String shelves I've wanted for years. It's hard to part with books though. I reckon I have about 150 books on my 'to read' list so am going to aim to read a book a week come autumn/winter. I feel I should be getting out more in summer. I'm trying to resist acquring new books until I've read the ones I've got but it's swimming against a tide LOL
I've just read a review of a book by a retiring Consultant Geriatricion (The golden rule by Dr Lucy Pollock) on what she's learned from working with old people all her life and now want to buy that, it sounds very inspiring and uplifting. I'm working my way through some of the Mindfulness books in my collection which is helping. I know the theories but need the reminders of how to put it into daily practice!
I will look that book up and I am looking through some of my meditation/yoga/feng shui books as well. It's a good thing to remind yourself that there is more to your world than meets the eye and much comes from within. Good timing for me as well, tangocharlie - thanks.
I have no good advice just absolute solidarity. I have been feeling quite rotten for at least a month and finding it very hard to feel positive a lot of the time. Even though our 4th granddaughter was born yesterday. I need to see the GP tomorrow about a long list of things that are making me miserable- hopefully will feel better after that!
We just need to keep going- there’s no real alternative! It’s really good to share!
Thank you. I feel better for reaching out, having a rant and hearing from all you lovely people. We are not alone and loneliness is just a state of mind innit. I saw a GP last week and he wants to put me on all sorts of new meds which depressed me. Is this how life is going to be from now on? More side effects. Happiness is a state of mind and comes from doing the things that make you happy. Tomorrow is another day. Enjoy your family. I was a my nephew's wedding at the weekend and although it was a joyous occasion and love was all around, somehow it's made me feel all negative emotions, like envy and wishing things were different. I have a lovely extended family of siblings etc but not a family of my own so to speak so am missing out on the joys of having children etc. A case of the grass is always greener perhaps? I've decided I need to be more proactive and see friends and family more as I know being with people and connecting makes me happy
I do understand those negative feelings popping up when it is supposed to be a joyful event- how horrible that is. Also understand that dread of more meds and therefore more side effects- I am so sick of it!😞
Hi Tangocharlie, So sorry to hear you are feeling 'down'. I know exactly how you feel - I know what continual back pain is, some days better than others. My 'go to' is to play my flute or oboe but find it so difficult at times to get started. Whatever you do, try to be positive and keep smiling and know that a smile is worth so much to others. You are only a phone call away from friends too. I rarely write anything here but it's where I look at every day and it gives me some strength. There is love and support here and I am grateful for that. Love and prayers that you feel better soon and get the treatment you need. xxx
I'm so envious of anyone like ou with musical talent. You did inspire me to put the radio on for while adn do a little shimmy adnd singalong around the room - I daren't do anythng too jerky in case I break another bone! Also a good point that if something seems overwhelming just Start and see how you get on, and usually you get stuck in.
Hi Tangocharlie - thank you, I'm so pleased I inspired you but do be very careful. Yes to starting and getting on with things - I play flute in my church music group and play oboe in a concert band and at times it's an awful struggle to actually get up and go, but once I get there and begin to play I actually forget my back pain and feel normal to be with others. I'm only 3.5 years into my PMR journey and have a DEXA scan in a couple of weeks.... Like you I do get very 'down' at times and presume this is because of the adrenals struggling to wake up. . Listen to as much music as you can its transporting at times. Also the great thing for me is the support there is for all of us here. Love and gentle hugs to you.
Feeling down and fed up is really difficult to manage sometimes, and even though we can all find things to be cheerful about, those phases when nothing feels right, just seems to make everyday living that little bit harder to manage doesn't it.
I'm so sorry to hear you're struggling a bit at the moment, particularly when you yourself have been a source of strength and support to others in the past.
When I'm feeling really down, I'll go out in my small (but perfectly formed!😄) garden and 'potter'. I'll also watch the birds and go for a walk around the meadow & river that are right outside my own front door.
I see butterflies, damsel flies, kingfishers, moorhens, ducks, woodpeckers, muntjac deer and much more besides. All of that lifts my spirits in the most restorative way.
I'll read, listen to podcasts, and even swoon over Vernon Kay on BBC Radio2. Haha! I think he's so handsome.
I'll WhatsApp some lovely, understanding friends or bake something delicious.
Out of all those things though, my walk around the meadow and river is definitely the most therapeutic.
I know you'll work through this period and you did exactly the right thing ...leaning on all of us so we can help hold you up.
Oi you, now look what you've done, made me well up and moist eyed! Yes we are all here for each other and today has reminded me of that. Usually if I'm down I close up and keep myself to myself but today has remininded me that the opposite is more helpful, which is why instinct brought me back here after a while away. BTW I think you'd fit in well at my local camera club they all take pictures of things in their gardens especially birds and flowers. I've learned about all sorts ofthings like damsel flies but no one has mentined a deer in the garden so far. I also learned what a chiff chaff is because there is one outside driving me crazy and when I told people about it and impersonated the noise learned what it's called. We have large communal gardens around our flats soi don't do gardeningbut I do like indoor plants. And I have a gorgeous big park just over the road.
That'd be a winner at the camera club! Phone cameras are brilliant these days, I use mine more than the 'Big camera' as I always have it with me and I've won a few competitions with photos taken on the phone. The camera sees the details my eyes can't. I went for a mindful walk in the park yesterday evening and got some great landscape and tree shots in the evening light. early morning and late afternoon/early evening are what photographers call the Golden hours
VK…. yes he is a handsome chap.. must admit before he started on R2 I thought he would be another vacuous male model/perfect couple type. But actually he’s very grounded, and if you’re interested has some good cleaning tips - worked as cleaner in between modelling jobs - but think he might be a bit OCD!
Not too sure about the other half though, my son has worked with her in a previous life [son’s, not her’s] and is very scathing… what you might expect. 😏
Personally I can't stand his wittering but each to their own, one morning he wittered for about 10 minutes about trying to find the end of a roll of sellotape. I wake up to Radio 2 but keep thinking I should switch to Radio 4 .... I switch the radio off when he comes on at 9.30. And as for Gary Davies ..... Ah the good old days when we had Terry Wogan to wake up to
Can’t be doing with GD that’s for sure… and R2 has certainly lost it’s appeal - just dip in occasionally nowadays… Mind you, the Beeb seems to have lost its way.. full stop..
I’ve changed to Boom radio . Granted the adverts are annoying but the music is really good and some very interesting facts along the way. My own playlist of 60ies music always makes me feel better when I’m fed up with being unable to achieve most of the things on the endless lists. Dealing with armfuls of veg. at the moment broad beans, dwarf beans, runner beans that seem to appear overnight, an avalanche of tomatoes, heart-sink when I see him appearing with another load 🙁😀
That doesn't surprise me about TD.I really love VK's morning show though. There'll never be another Steve Wright, but VK has that same fun, lively attitude with a good balance of laughter and sombreness when the moment demands it. He also makes me feel like he's talking to me and with me in the house.
He lifts my spirits and lightens my load when I listen to him, and that's always a bonus.
sending support to you. I too benefit from the wisdom here. My ankles are all swollen and my face doesnt feel like my face! I am listening to rock star biographies to keep me amused - john taylors from duran duran - so funny.!!
I also keep busy - i have a public heslth job so that exhausts me… and reading - novels and poetry and films and this morning a lovely friend took me for breakfast! Keep your friends close and let them kniw how to support you. Much love
Interesting about friends and family. Those younger just don't get what illness is like so I've learned to hang around with older people who understand. Mind you, 3 80+friends have more energy than me. Usually much wiser and good company too. There's a cliche about 'as long as you've got your health' which you don't appreciate til you haven't. I am lucky I have some lovely friends, and I do feel I am friends with everyone on here even though there are some I've never met or spoken too. Yet anyway. I should change that and organise that zoom I mentioned a while back. Thanks for your kind words and thoughts andall the best to you too. I see from your profile that you're quite young, and still working, how on earth do you manage to do that? Hope if youre a HP you get suitable support from work x
Also interesting point you raise about asking for help. A friend came over a few weeks ago who lives far away and for one reason and another we hadn't seen each other for 2 years. She's one of these people who can't sit still and has to be doing domething so she did loads of things for me. She said at the end she was sorry she hadn't been over sooner, said that I need more help and she'll be back soon. I'm one of those people who doesn't like asking for help, yet I know how good it feels when I can help someone else so have to see it as giving others a chance to feel useful if that makes sense? I don't like asking though as I don't want people to think I ask too much or that Ill get depenedant on them
That resonates with me to TC.My hubby is very adept at knowing when I'm struggling and really looks after me during those times, but without being overbearing or annoying....... haha!... he frequently annoys me in other ways though! 😄
A wise woman once said ( probably on this forum) that it is one of the kindest things you can do to ask for help. It makes others feel useful instead of helpless, and most of all they don’t feel bad about asking you if they ever need help. Hope you feel happier soon x
I good friend's husband has recently ben dx with MND. I asked if there was anything I could do to help and expected her to say no given I'm currently physically decrepit. She said yes, could I please help with things like Power of Attorney and the PIP application as I've done them before for others. I said I'd be more than happy to. It feels good to be able to use my knowledge and skills to help
oh, I am so sorry that you are feeling down, but it comes to most of us at times even those we think are very strong. I don’t really know what to say other than I hope things will soon get better. Once you get that rollator and can get more mobile I am sure you will feel a lot better and can get that ice cream.
I am so glad that you have reached out to your forum friends and that has helped.
Keep us informed as to how things go with you and how you are feeling. As you see there is always someone around to listen and help.
Remember tomorrow is another day and hopefully you will wake up feeling a lot better.
I’ve Just seen your message. I hope you’re feeling better now? The members on this site are fantastic aren’t they. Let me know if you want to chat/message xx
I invent a recipe for something supernourishing...make enough for several days...I use AI chatgpt sometimes for extra inspiration...just tell it what ingredients you have and what sort of dish you want (stew, soup, salad etc). I use frozen veggies so no exhausting cutting up and have soups (hot or cold everyday..also make my own bread as atreat (luckily I have a kenwood mixer).
Just made leek, broccoli and pea soup ( a handblender helps) great hot or cold (serve with greek yogurt).
Now that's something I want to get round to some day, I haven't used AI yet but am very curious. I'll come ot you for lessons when I've got some of the other more pressing things on my To do list ticked off. x
easy. here is the url: chatgpt.com/ register (it's free) and ask a question...you can use ordinary language e.g. I have some grated cheese, potatoes and eggs. give me a recipe for a supper baked in the oven. OR ...ask about anything you want information on...it can write stories, poems (not great)....have fun
Hi tango Charlie( love the name,brings back memories of my time in the force,)Know exactly how you are feeling ,wishing that the body would be as willing to do things as the mind .Wishing for days long gone when nearly everything was done with such enthusiasm and pleasure.The tasks become as the name suggests,whereas in the past they would have been the norm.We all have to get in the mindset of only doing what our body will allow but it is hard to be this person when the brain is screaming that this is not who we really are.But we plod on,wishing for a miracle cure which is not forthcoming,wishing that we will at some stage get back to how we really are or want to be.But do you know what?Today is going to be a good day,because I am determined that the last 2 days when I have felt down,sad and weary are not going to become my normal.The mental side of this goddam disease takes no prisoners, and I am not going to let it shape my future.So ,after my housework today,providing the sun is not going to spoil my activities,I am going to deadhead my roses,the second flush of blooms are on their way,I shall join my dogs in their paddling pool( sod the germs!) and listen to the Olympics on the radio under the shade of the apple tree,and reflect that in spite of what we are all going through,we are all one big happy family on this forum( well not happy most of the time!😱) and need never feel lonely or down.Oh and another little silly thing,I sometime try and see the person behind the names on this forum!You would be very surprised at some of the visuals I come up with!😂😂😂🤣Stay strong Tangocharlie ,go and do yourself a charlie,uniform,papa,papa,alpha!, xx💐💐💐👩🦯➡️
Thanks for the inspiration x I've never been in the forces, but my close friends call me TC so the name stuck. I mus change my profile pic, that one is about 8 years old now when I was still full of youth and vitallity and I've changed a bit since! Still good for age and miles on the clock thogh lol
Dare not put a profile picture on mine,it is the sort of face that in a photo ,one would pin on a fire guard to keep kids away. Now there’s a thought,maybe I could get an enlarged one to stick by my pond to keep the damn heron from snaffling my poor fish!😱😂😂Have a lovely day,🌞🌞🌞🪷🐟
I'm sorry you're feeling like this. My ho yo is to get outside - I'm lucky enough to be well enough to exercise but I find just sitting outside helps too. As you say phone a friend / the right one can really lift you. I find wearing brighter colours can help too - a pop of colour with a bag or earrings if you don't want to do clothes. Hope you feel better soon.
You may always contact me if you want to chat or moan or whatever. We need each other especially because this journey we find ourselves on challenges our hopes that we will be Easy Riders. It's not an easy ride, is it!
I'm sorry you're feeling so rubbish just now. You're a brilliant, resilient, wise woman doing all you can to manage this horrible condition. You inspire me. I guess it's very hard for you to accept these rubbish times especially with your to do list. Could you abandon the idea of cracking on for a bit? Taking time to get down into the bad stuff, saying no I can't, getting people to do things for you, being undisciplined and dependent, just for a while?We use a lot of energy just keeping our heads above the water and it's exhausting, apart from all the other problems. I'm sure you hate the idea of being a 'wimp', but sometimes people find it restorative to 'give in' for a while.
*blushing* thanks for the Big-up. I don't mind being a wimp, my pholiosphy is 'don't just do something, sit there' generally. Just atm life has been so busy that some things I've put off have now become urgent. My To do list has June crossed out then change to July and now August! I'm going to take most of August off and chill once the key things are ticked off.
hi tangocharlie. Sorry you’re having a low period. But tomorrow is another day & hopefully you’ll feel more uplifted.
My go-to activities are a nice walk, baking or meeting a friend for coffee & cake is bliss.
After upping my Pred up to 5mg for 4 days as Broseley suggested, then back to 2.5mg, and 2 weeks later the pains have reappeared. It’s taken me 4.5 years to get down to 2.5 and the thought of upping my dose indefinitely depresses me and brings home I could be on the Pred for heck of a long time more.
What dose did it go pear-shaped at? If it was 2,5 then you have to go back to at least the dose above, If it wasn't enough before the flare protocol - it won't be enough after either.
Maybe when I was still on 3mg it was just enough, but I think going down to 2.5 was a bit mad tbh. I was just keen to reduce with a view to eventually coming off the Pred. [see the pink things flying through the sky]
The doctor initiated blood tests and my CRP was 0.8 so I don’t understand this flare-up…
5 days extra Pred very often isn't long enough to get things back under control. It might be for some, but certainly not all, depends how much inflammation has built up - which is why we say at least 7 days - I usually recommend 7-10 days.
As PMRpro has said, if 2.5mg was too low before, it’s link to be now.. another reason why we say drop to just above the dose where you had problems.
Blame the weather. So heavy and hot and polluted. Drink strong coffee, meet a friend, watch a film or when I need to cheer up I go to IKEA with a friend and we complain about everything (spend £12) and feel great when we leave.
Hi ,So sorry you feel this way, i am exactly the same, this is my third summer ! i have been feeling so fed up. My family have been great. But i cant hold them back when making days out.As well as PMR im waiting for a THR plus i have had a compound fracture in my spine to cope with! So what i do is sit outside with a good book in the shade and hope when i see the consultant on Monday that i will soon be back to walking. Just to be able to do the things we all take for granted ,a walk along the beach, sitting on a park bench watching the world go by. Days out with my family or friends and keep believing things will get better soon.I know how hard it can be and we are all entitled to bad days, hold on good days are just out of reach atm ! Best wishes ,chin up Viv.🌹
That's what is concerning me most at the moment, not being able to walk and get places, it's so frustrating. I'm seeing a physio who specialises in spinal compression fractures next week so am reading all the info on the ROS website and the info they sent me now I've become a member (which is absolutely excellent I must say) and preparing a long list of questions. She said on the phone that though she can't fix me we should be able to get some improvement. My main question is will I one day b able to walk again witout the rollator
Sewing! I get immersed in whatever I am making and finding it so relaxing. This week I am making blouses for my trip to France in September. Finally going to Versailles.I struggle to get motivated for mundane tasks or paperwork. I suffer from CBA as my Buddhist teacher puts it (Can't Be Ar**d) 😊
I want to to go there next year, enjoy. I was in Normandy in April and ticked Monet's garden off my bucket list, but actually I didn't tick it off because I want to go back. I think CBA is a good philosophy. I'm not Buddhist but go to some of the drop-in sessions at the Kadampa centre in Leeds, the monk who leads them is very funny and makes us laugh, even when talking abou thte big topics like death I have a book on my shelf called 'Be arsed. I've never got round to reading it LOL
yes I know that feeling. I have eye problems so listen to audio books all the time on my phone. I find any task goes better if I’m listening to a good book. Throwing things away is also very therapeutic I find and putting old papers through the shredder. What ever helps !
So good to read all the replies to your really moving post. I’m 10 years in and some days when alone and experiencing lot of pain , feel a great sadness at the loss of optimism that’s always kept me going . Of course it could be so much worse and I am grateful for lovely friends and my grown up children but there are just … some days ! Lots of good suggestions from the ‘tribe’ 🦋🌈💚xk hope today is better 🙏
A bath with lovely essential oils followed by an uplifting audiobook. Lots of rests and remembering it WILL pass. Hope you feel better soon. I know how hard this is and how easily gloom can descend. I deadhead my roses and search for the slugs that have been eating my hydrangeas!
My daughter has just renewed the bathroom in the house she has just bought - bath out, lovely big shower in, room for a proper shower stool. The conversion of the annexe bit to make a granny flat for me will have a wet room - fully accessible. I really don't like baths so it doesn't bother me. My Italian flat has a small bathroom, I wanted a shower but was outvoted 20-odd years ago but that bath has been used as a bath about 10 times!! It has an excellent shower but you have to stand in the bath, My en-suite has a small but perfectly formed shower, there is a structural pillar in the way! Do wish it wasn't!!!!
Sounds great, don't get me wrong I love my walk in shower, it's just occasionally I would love a relaxing shower.We have a 200 years old house and there wasn't enough room for both .My other half very kindly have up the bath for me as he likes a long soak, but like all things you get used to it ! I just find myself buying all different shower gels to compensate😊.
Eventually permanently because there will come a point where I can't stay alone in Italy and it isn't fair on any of us to expect them to come and haul me out of a pickle!! My daughter offered at Christmas and this house with all its potential turned up a couple of months later. I and her dad did something similar for his mother when we returned to the UK from Germany and she regards it as a privilege to be able to make the offer, Having done it myself I am very aware of the pitfalls, We must all have our own spaces. The village is OK - has a pub restaurant and shops in the next village a mile down the road, a paved path suitable for a mobility scooter and accessible buses every half hour at the end of the drive. The house isn't closed in, open views to the south and west with a large garden and a park next door. Not Italy and the weather will not be what I'm used to - but by then I probably won't mind as much! It is future-proofing and financially sensible for all of us as well.
Makes perfect sense, a new chapter about to start for you. We lived in Spain for 12 years loved every minute of it.Been back in the UK for 12 years .We live very close to both daughters, which is a bonus. We were glad to live abroad but just as glad to be back ! It will be strange for you at first, but I think you will love the convenience of things.It's far less complicated .Best of luck .
I have to agree with that .Dorset where I am is very poor looking after PMR patients I have seen two and they were utterly rubbish. I've given up seeing them and have now been told that at the moment there is only one covering most of Dorset !
I just gave up on them years ago, told my DR not to bother referring me as a waste of time .My friend told me the other day about only one in Dorset and surprise there was a long waiting list !
My main problem is that I am on a biologic - ostentiably for the inflammatory arthritis of which there is some evidence - which is what keeps me stable at 7mg pred so I will need a rheumy if I am to have any chance of staying on it. Fife apparently is as dire as Dorset, all retired last year until one said he'd postpone his retirement! 50/50 might work for a while - collect my tocilizumab there ... My rheumy, Christian Dejaco, suggested that.
As it is turning out, I may be able to keep it on as I haven't got to buy a house in the UK. It isn't clear what the tax position would be if I spend more than 90 days in the UK though or how medical care entitlement is affected if I am in Italy for less than 180 days. I asked the UK accountant who passed on the question - and I have heard nothing, Once Nat's flat is sold I have to see them anyway - that should have happened by now but hasn't. will have to stir myself and get me even further north ...
But not ready for another 18 months at least. Especially after this summer in the UK - too hot in July/August at home but this is ridiculous! I'm wearing what I wear in the winter at home!
I know people who somehow manage it like 90 days in France then 90 days here then 90 days again or something, I'm sure it's doable somehow. So stupid and pointless, but I'd better not get into politics or I'll be thrown out by the bouncers .... I have a Spanish neighbour who flies back 'home' for all her treatment after she was badly let down by our NHS who missed her cancers ... I think under the GHIC rules you would be perfectly entitled to do that but I don't know. The Consulate might be able to help because rules must be largely based on citizenship.
80 replies T.C and still they keep coming! It just shows you what an amazing, supportive forum this is! You did well to reach out to us and I'll just bet you are feeling the better for it? Lots of good ideas for lifting your mood and I am sure you will use some of them. How about buying that rollator and going for a high speed zoom around your park?
I too am feeling pretty fed up with the constant stiffness and lack of energy myself but I've had a friend here today who is really in a bad place mentally. She would appear to have everything but seems to have been born with a PHD in misery! I feel so terribly sorry for her but trying to lift someone into a brighter place is SO hard. I have told her I will be her "custodian of hope" which is all I can do.
This too will pass, as others have said. My prayers are with you....... I just know you will soon find yourself in a sunnier spot......We all care.......
Thank you for your kind response. Yes I feel very blessed to have all this support. I have bucked up and it definitely helped. Re your friend It's hard supporting others especially those who have mental health issues. I have 5 close friends with cancer now and I try to be there for them. We have one friend in our wider cirlce who has a history of depressin and he accepts it will be a lifetie of anti-depressants for him, he feels no stigma about that as he says it's only like say some people will be on heart tablets for life to save their life and so that's what he needs to save his. I also like the Eeyore (sp?) cartoons from Winnie the Pooh. They all know they can't necessarily stop him being sad but they sit with him anyway. I'm sure you do help your friend just by being a friend. I spoke to a friend of a friend recently and told her I admired her for always being so cheerful and stoic and kind to others. She replied droley 'it's not without great effort on my part' 😀
Hi there Tangocharlie. Nothing more to add to any of the helpful stuff above. Just wanted to say that I laughed out loud (as did my husband) when I read your comment on the subject of rollators: "if one more person says I'd be better off trying to walk without one I'll smash them in the face" - so unexpected and so funny!
I've learned another good line to use if someone is giving me their unwanted, uneducated and unqualified advice (which is basically arrogance or judgement that they are right and you are wrong - 'And when did you qualify as a doctor/physiotherapist? LOL
Hi, reading through all the responses to your post has reinforced what a great forum this is.
It’s so easy to think we are alone in our battle with PMR and all the associated issues that come with it. I too am going through a rough patch at present and will definitely try some of the suggestions you have been given to try and lift my spirits.
During the 4 years I’ve been on this forum you have always been such a great support to others. I hope you get some relief from seeing your specialist physio next week. Sending you love and support to get through this difficult time ‘This too shall pass’. 🌸
Thank yo so much. I'm feeling a lot more upbeat now, so in that sense yes things shall pass even though not everything has a solution. Or not the solution you'd like. By chance I read an article in the iPaper called something like 'How to deal with disappoi,tment' which was perfect timing and when I get time I'll summarise the gist of it. It was mostly things I know including firstly, ackowledge you are dealing with thoughts and emotions and verbalise them. So me saying I'm in pain and fed up and feeling lonely was the first step I needed.
Hi tangocharlie. I don't like the sound of that to-do list. My strategy with jobs I can't face (like filing or hoovering) is to tell myself I will do them for 5 minutes and then stop. It's amazing how absorbed I can get in a boring job once I start it. But I have to be ready to keep my promise to myself to stop after 5 mins. I try to have really low expectations of myself and then I can live up to them and congratulate myself!
I saw a physio today and I said one of the outcomes I wanted was a list of exercises I could do for say 30 mins a day. She effectively laughed and said that was far too much, aim for short bursts of 2-5 minutes focusing on different areas. I like the idea of a 5 minute rule for all the things I don't really want to do and never get round to starting. I've put off writing a long letter for ages but just spent 5 mins doing a quick draft of what I want to say and it's nearly there, just needs a bit of tweaking now. I' also remember that line off the Young ones' in the 1980s where one of them says 'I've only been 5 minutes. and the mate responds by saying 'try telling that to Roger Bannister'.
She is/was amazing, Sarah found her for me by asking around her colleagues, and also found me a most wonderful osteo specialist consultant rheumatologist. All 3 of them are proof that angels exist and walk this earth amongst us. They are all totally baffled by how on earth I got these fractures with 2 normal DEXA scans though, and that will be the subject of my next post when I get round to it .... a warning that you can't rely on them
Christian just said that you can't be sure of the quality of bone being made. And that is probably where my doubt about the blanket use of bisphosphonates (or not) lurks. There is too much trust on a lot of things. I know of people who developed compression fractures after 9 years of AA.
The physio was also pretty scathing about too many people being put on bisphosphonates needlessly. It's a complex area, you have to weigh up the risk factors and make an infrmed decision. I was smug after postive DEXA tests made me think i'd nothign to worry about but with hindsight wish I'd looked at annual infusions, given being female, post menopause, on long term steroids. Even then my risk score was low, it's all very confusing. It'll be the subject of a post I'm currently drafting
I keep being told these drugs work to strengthen bones but when I ask Drs how do you know that if there is no way of seeing the inside of the bones they look at me blank Eventually here will be some new types of DEXA scans that can do Trabecular scans which is presumably what they use for the research.
She noticed as I was leaving that I extended and stretched out my arms to sort of push down on the rollator which meant I was tensing and putting pressure on my shoulders. That was such a useful observation in itself, I now try and relax my shoulders down when walking and there's already less pain in my shoulders and upper back. Also I've stick one of those theraband things around a chunky table leg and do a sort of seated rowing action. Another sort of mantra was leaning my head and neck back is good and trying to hold a stretch there
I’m so sorry tangocharlie that you are feeling lonely and depressed. I have read many of your replies to people on here feeling as you do now. You always have heartwarming things to say and I’m sure many people have been cheered up by your replies. So ‘here’s back at you ‘ as they say.(I think it’s the Aussies’.) I always find that waking up on a sunny morning cheers me up and a stroll round the garden listening to the birds, unfortunately drowned out by the seagulls! I feel very fortunate that having had an operation for bowel cancer in January and expecting to go through bouts of chemo, I was told just after I left hospital that I did not have to have chemo because all the cancer had been taken. Every day after that felt like a bonus! It’s worn off a bit now and I’m still moaning about my aches and pains but I do still feel very fortunate.
I hope your feelings lighten soon and you’ll be back to your usual cheery self. All the very best.
Right back atcha as the saying goes! Fanatastic news about the cancer, going through somethng like that must have changed your perspective on life, I'd be interested to hear if so and how. As for bloomin seagulls, I stayed in a hotel in Scarborough recently and the b@stards were on the roof above and the adjacent hotels, don't they ever sleep? The size of eagles too, must be all thechips they pinch. They made sure I didn't sleep, even with earplugs in. But the spa in the hotel made up for it, I think that is something I need to treat myself to more often, it makes sense to look after your mind and body and relax. I'm sure stress is at the root of all illness. Thanks again for the boost, and the compliments x
I feel for you. I get so frustrated when my brain is full of plans and my body just wants to splodge!!!!! I work in our local churchyard garden areas so on days where I'm too exhausted, I'll just go and walk around it which I find refreshing. Sadly, now being on methotrexate I can't cope with too much sun 😫 😩 😢
Understand how you feel today. We nearly had summer too, well for a few days. On those days I went to the sea and had a swim. A happy place for me when I actually do it!!! Today it's lashing rain and I have been incredibly stiff (knees OA) and hardly able to walk. PMR is actually behaving itself TG. But alas I have just eaten a packet of biscuits and feeling worse for it. Such a bad feeling. So I'm now going to pull myself together and browse some gardening magazines/house magazines. Always fills me with inspiration. I like to imagine what I could do🤔. I find it relaxing. Different things for different people. Hope you find something to occupy your mind even if for a little while. It should help. All I need to do now is win the lotto to fulfill all those inspirational moments gained from browsing those magazines 🤔🤗🤗
I feel the effects of sugar too. And if I manage to go a day or so without it feel so much better and usually lose a bit of weight. My theory is the sugar send insulin levels haywire and so my body stores it as water or fat. It's hard trying to keep away from the Magnums on a sunny day though. I love magazies but I don't think I've ever knowingly thrown one out so try and resist buying them or they are in the magazine rack or on the coffee table for ever. I did leave the last copy of the PMRGCAuk newsletter in one of those little free libraries and I do hope it found itself to somewhere useful
Tnx for your response tangocharlie! Hopefully you have found something useful by now. You got so many responses. As for Magnums, I never liked them, odd I know. I prefer a chocolate ice any day. I took well know what you mean about magazines. My house is littered with them going back many many years. I just can't beat to part with them 🤓🤓🤓. All the best to you 🥰
hi tango Charlie! So many uplifting ideas have already come in. I have so much compassion for your moment of being lost at moving forward with tasks. I too suffer from compression fractures and can give you some encouragement… 3 years ago I began treatment with daily injections of bone building wonder drug, was on that for 20 months , then switched to annual acid infusions one year ago. The bone builder was amazing, removed much pain, the acid infusion not as dramatic. I have used a rollator for the entire process and ignored those who advised I might be better off just walking. Glad I did because now I am becoming a bit more independent with short stretches walking independently. It is going to take a while for your spine to renew its strength, and there is a light at the end of the tunnel. I still use rollator and am grateful not to jeopardize the rest of my vertebrae’s with premature pressure. These drugs work, just not immediately
I have always loved your spirit on the forum and know it must be very hard to embrace that at this time in healing it’s hard to do almost anything. This too will pass and I send my hugs your way. No task is more important than the rebuilding of your vertebrate. I have advanced, severe osteoporosis and am getting stronger every month.. I know there is hope for you!
In the meanwhile, know you have company, and we love your contributions to all of us on the form, you are a blessing to us all… your words helped me through the last 5 years of PMR! Thank you for who you are!
Thank you that is so useful to know tose tips and see glimmers of light at the end of the tunnel. I wonder if trying to walk without it initially as friends kept telling me to do actually made things worse because a year ago I could walk without it, albeit very slowly and painfully. The specialist angel of a physio I saw on Monday said I should get some improvement even though it will be very slow. The best thing to do would have been to rest and heal the first broken bones but instead it lead to a domino cascade effect. PS did you take Romo or something else?
When I feel low I listen to my fridge. It sighs! Quite a sad fed up sigh which makes me smile. I think it’s to do with the self thawing mechanism. Well, it certainly thaws me! Hope tomorrow is better my compressed friend ❤️
Mine clicks and clunks a lot, like me, and the bottom of it keeps filling with dripping water. Even at my age I don't know if you turn the dial up or down to make it warmer, or do I need it to be colder?
I enjoy pottering in my little garden. I've grown lots of dwarf snap dragons from seed, really easy to grow, cheap and the slugs don't like to munch them! I also enjoy doing " painting by numbers"on my tablet. I use "Happy Color" app, and the pictures are really nice. It's very addictive. I also play bridge online with some great people who understand my "pred head" problems, which include counting ( in)accurately to 13! Keep smiling.x
We all have soft shoulders and ears meant for listening....as you have so kindly supported many.....sorry, I'm late to the dance. I don't know, I've read some awe-inspiring, flattering, and loving posts....But.....it will take a lot to beat this one:
123-go to tangocharlie
I’d be proud to have you at my side in next year’s fund raiser- actually or figuratively. We could BOTH wear purple 😈😈.
Maybe a dash of silver, other than the hair (doesn't count), to go with the purple???💞
We WILL do it, by hook or by crook or by pimped up purple rollator. Big hugs to you to for always supporting others even with all you've got on your plate xx
Inspired by that. I sent someone a Thank you card the other day and they were over the moon to get it. Ages ago I bought some blank cards to actually make birhday cards in future rather than pay 4 quid. I plan to stick photos to them or something I've cut out of a magazine. Whehter I'll avctuall y get round to doing so is another matter.
Wow, TC. Your post has brought about so much support and ideas. Once again you are helping us all even in your challenging circumstances. If I am not feeling very mobile, I can usually get to my lean to greenhouse where I can sit and see the garden/watch the birds. It helps to clear the mind. I never feel able to do the jobs that need doing when I am like that, but can sometimes find myself doing something else and feel as if I have achieved something, albeit without intent!I do hope you get some respite (and rollator that suits).
I identify with your current low....I'm recovering from fractured ribs and a pelvis - ongoing pain and feeling like I'm getting weak from inactivity. Trying not to feel sorry for myself. I'd import a couple of kittens to cheer my up if I could, but I make myself do a "gratitude journal" each evening before I go to sleep to acknowledge the things that are good in my life and it seems to help reset my mind to a more positive place. A good sleep makes a huge difference to my mood as well, but at times that seems to be completely out of my control. I try to rimind myself that "thsi too shall pass".
That's a good reminder thank you, I do keep a gratitude diary but don't do it when theings are going right, just when I hit a low. But then it does help me bounce back. I was thinking this too hall pas but then when I realised it won't , well the injury won't heal, but time does heal and you somehow move on don't you? Self care is the order of hte day as my physio has just remindeed me. Do't wait until you're in pain to apply a hot water bottle, do it anyway to relax.
Gosh you're the one always handing on excellent advice and encouragement. sorry to hear things are getting you down at the moment. Something i'm trying to apply to my life right now is the good old pacing regime. When there's so much to do that it weighs on our minds and spirits, it's easy to forget to stop and give yourself a treat. Like walk out the door into the air or sunshine or whatever, just for even a few breaths. My daughter in Australia calls it connecting to or listening to "country", even if that's only a few street trees, or a shrub nearby.
Thank you for the compliment, I like to try and help others and 'give back' because other people on here did that for me when I needed help. And still do from time to time, hence the post. Yes getting outside is always a good tonic for me too
Remembering that low cortisol (or even higher doses) flattens out your responses to good and nice things as well as bad. I find it dampens my enthusiasm quite often but when i feel like that I just remind myself that it is not 'me' but the condition and meds, and that it will pass, just like a cold or - as I often compare it to - the hormonal ups and downs of PMT that many of us learnt to navigate. But you are doing the right thing by widening your circle of contact as that very process of interacting with people reminds you of the good things in life. Your name is Tango Charlie - does that give a clue to what you enjoy or does it just represent your initials? Because tango is great fun. For me, I am always busy and rarely on my own but I enjoy just being around our house and garden when it is hot like this, or finding five minutes to have a phone chat with one of my dear but far-flung friends, and not necessarily about PMR!
Just my initials, I have two left feet, thanks for the ideas. I alwasy fancied learning to tap or ine dance but never got round to it. Too late now sadly with the back problems. You're right, there are good days and bad days and when I wote this post I was having a few too many of the latter. Time heals, and doing all the things that make you happy
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So fed up!
Feeling overwhelmed by things on 4 mg of Pred, physically ok, but need to make an effort not to despair! 
Hello - I'm interested in other GCA experiences
