I honestly don’t think I’m depressed and my family and friends don’t. But I seem to get an overview tearful bout every now and again. I feel like everyone else managed PMR better than me. I’m constantly foggy. Some days I’m not overwhelmed by tiredness others I am. Why can’t I just get on with it. I promise I’m trying. I’m only doing minimal stuff. 10 mins walks. No real housework or cooking. I go out for ride in car most days. My husband drives. I just sit there. I don’t feel in this world anymore I do get the odd day where I’m about 70% but that’s rare. The only place I love is bed. I pop to my sons and see my grandkids. I’m luckier than most but this my body is done in I don’t know how to forward. This group has saved me and I’m a bit embarrassed when I read some of your horrendous stories. This whole thing has totally zapped me. If anyone has had Chemo that’s how I feel. I’m seeing rheumatologist on 19th 🙏. Maybe he willExplain more. Thanks for reading. It’s sometimes therapeutic to write this stuff down. Xx
Crying : I honestly don’t think I’m depressed and... - PMRGCAuk
Crying
I really think you should try and speak to your GP about how you are feeling. I hope that you feel able to do this
I know completely how you feel. I have been off prednisone almost a year and yet still have days when I am so utterly exhausted I feel like death. My husband died nine years ago so it is me and my cat in a nine room house. Having to take care of her gets me up and moving and being a clean freak makes me keep going. Fall cleaning...windows, wall washing etc takes four times what it did a few years ago. And there are days when I do nothing but feel sorry for myself. I am 81 but this is the first time I have ever been sick, This PMR is relentless and the pandemic made it all so much worse because of distancing and all. You are not alone. I find reading, doing crossword puzzles and logic problems takes my mind off things for a bit. But obviously it isn't fatal. Enjoy the small things for now, a sunny day, a hot cup of tea, a good show on tv. This too shall pass.
I bet that we haven't all managed PMR better than you. I spend a lot of time being utterly miserable. (So do my sisters with their different ailments, osteoarthritis and COPD.) I was crying only this morning. My only remedy is to go for a walk. I am probably doing too much of that but it is my form of therapy. Could you manage to build that ability up gradually? Or something else that helps you? I take photos with my phone to show that I am still part of the real world.
Walking is my solace. Thank you
Hi Uglow - sorry to hear how you feel - have you actually had Chemo as you liken it to that’s how you feel? What dose of Pred are you on these days?
MrsN
Yes I had lung cancer. I’m on 16mg was going to drop to 15.5 tomorrow
I really think you need to talk to your GP you may in fact be depressed without you really being aware. If you feel as bad as you did following Chemo then you must be in an awful lot of pain, l wouldn’t reduce your Pred until you speak to your Doctor. What other Medications are you on & how long is it since you finished your Chemo? Do you have any other underlying conditions as there is not much information on your Profile for us to really help.
Kind Regards 💐
MrsN
I haven’t Gerd but chemo was 5 years ago. I mean the mentalSide of chemo not physical
That worn down lost feeling x
Uglow I'm so sorry to hear how you're feeling. I read some of your previous posts and I pull a muscle in my back frequently and my chiropractor puts it back in for me.... don't know what I would do with him. Apparently, prednisone makes our muscles less elastic so we are prone to that. Stretching every morning helps that. I agree that a walk outside is always a boost to our spirits. I would also suggest you talk with your doctor since it does sound like you have depression.... not really wanting to do anything but sleep and it doesn't sound like much gives you pleasure right now. It could be that a mood elevator would help right now. I hope you feel more energy soon.
Keep writing!
Many of us have a little cry every now and again. We ARE human and we want our lives to run as smoothly as possible. Sometimes we just have to give in. Sometimes you will even be pleased with what you have achieved.
Your case isn't unusual. We all, at some time, feel we are not doing as well as others - so be it!
Then as Pro suggests possibly Talking Therapies maybe able to help you adjust with or without the addition of anti depressant…..Good Luck & Hope you feel better soon 💐
Exactly so!
Sharing my little thrill of the day with you. Can you see who is lurking under the bushes in my tiny overgrown back yard? It is Mr Fox. I was sewing wild flower seeds that I had just collected. I didn't see him until I was bending over him about 1 foot away. What a shock! The little things in life do make everything still worthwhile xxx
Beautiful x
You sound a lot more active than me!! During the summer I have taken to going into the garden and perhaps dead heading something to make me feel active, I tell people I have been gardening. I sit and read a bit and then stretch out on my expensive, French gravity chair and watch and listen to the birds. The red kites gliding around, the odd swift, a robin sits next to me, the jackdaws making a dreadful noise plus an enormous amount of pigeons, with a couple of ringed doves. There is a squirrel with the most amazing tail and an old fox that suns himself on the lawn. There is also the dreaded Thyssen the cat. He is a total thug, I could not understand why my window box kept falling onto the ground and destroying my plants. Then my neighbour saw Thyssen doing it. He was originally a tiny kitten with a bell on his collar, he is still quite small but has managed to fix the bell, so it doesn’t ring any more. Thyssen, the scourge of the neighbourhood.
This is lovely, piglette! There should be a book written about Thyssen the cat 😀: children would love it. I may even have a go myself 😉.
I have magpies nicking my solar candles. Couldn't understand where they were going then saw one in action. His nest must be like Blackpool illuminations 😂
The magpies try to get on the bird table but after careful manipulation on my part they can just sit on top and get to the water. The food dangles inches in front of their beaks. One for sorrow, two for joy!
🤣🤣🤣
When planted autumn crocus for the first time, the (expletive deleted|) crows dug them up! I think they were eating the corms.
Sorry that maelstrom me chuckle 😂
As someone has said - lots of us DO have tearful moments. Sometimes it is for no reason at all, sometimes it is an over-reaction to something on TV, sometimes it is a reaction to someone who said the wrong thing at that particular moment. It tends to be worse in the earlier stages and at higher doses - but everyone is different.
Depression is often part of autoimmune disorders anyway but developing any chronic illness is no different from a bereavement when someone dies. You have lost your previous life and you have to get used to something new which may impact on every aspect of your lifestyle and often even relationships. Partners often don't "get" it, you look OK, you are put on steroids and they also make you look rosy-cheeked and healthy so your friends don't get it either unless they too have a chronic condition. You can't keep up with them, they lose interest when you suddenly cancel a planned event because you feel rubbish. Even you adjusting to the illness can cause problems - PMRCanada had a friend who couldn't cope with her change in attitude, lifestyle and weight loss and that alone resulted in the breakdown of the relationship. I doubt she is the only one.
The place to start would normally be your GP - who should be able to put you in contact with talking therapies in your area as they are preferable to pills. There are online options too and always the Samaritans who can provide contact information - some of which is on their website. Just talking about it - even writing it down and reading through it, helps you line up your thoughts. You have taken the hardest step to admitting you need some help by posting here and while we can reply, often talking to someone trained will help even more as they can help you see things you can't for yourself.
Thank you. I will speak to Gp. I don’t know we expect so much from ourselves we have an illness but it’s so hard to come to terms with. I use to be so active. Not in the gym way but always on the go. My daughter in law has fybro half my age and she says if I was as active as you I’d be fine. I’m annoying myself that I’m not adjusting
And that just adds to it - there is no need for guilt on top of feeling rubbish!
You can refer yourself for Talking Therapy as I did. It’s free on the NHS, you don’t need a doctors referral. Complete the form online and somebody will telephone you to have a chat and see which therapy will suit you best. Here is the link:nhs.uk/service-search/find-...
Don't be too hard on yourself, you have been through such a lot and getting PMR has put the tin lid on it. I've woken this morning, after another sleepless night, feeling really down and teary too. Yesterday I felt wonderful, this it seems is the way it is. I'm dealing with an incapacitated husband who heled me so much in and about the house. Now everything is down to me, which sometimes I feel is so hard. He is waiting for two new hips, and they can't come quick enough for both him and myself. A lot of fetching and carrying for him, which I don't mind in the least, but my body feels it on some days.
So, you have a good cry if that what it takes, it does make us feel better. I try and do it when I'm on my own, as I don't want to upset my hubby as he has enough on his plate too. Like I've said so many times before 'The Joys of getting Old' not nice when our brains still feel so young.
Take good care of yourself
Anne X
Sounds like you and your husband have each other to love and give hugs when needed and that is a lot to be thankful for.
Yes, are very close, been married 51 yrs this year. Sadly, due to Covid we were unable to celebrate by going on a cruise that was all booked with our group of ten friends for our 50th wedding anniversary. Been no holidays in almost two yrs and no socialising either. Once surgery has been done we will have to make up for lost time next year. Daughter (only child) is organising a family holiday for next year, so will look forward to that.
Anne, just think of yourself as a recycled teenager. It helps. 👍
My self depressive mood and treatment is going to be boo-ed by other PMRers, 😮🤣
When I’m feeling really really down and unhappy, I can finish off 200 grams of chocolate so quickly. I don’t feel guilty in the least…
But that’s my way of coping. Not happens very often , but it does once or twice a year.
YuliK 78 years
It's so weird how these mood swings come over us. Yesterday I felt really down for no real reason....angry too and irritable....sure it's the steroids as was never like it before them Yulik. A good ol' chunk of choccy does of good, so go for it. I ended up eating the rest of the bag of M&M's yesterday, enjoyed very much too. I've never drunk or smoked !!
Staplehurst good morning,
Bit of indulgence certainly does lift my mood. But obviously not recommended for frequent use. 😮
Have a Happy Day
YuliK. XX
I've suffered from depression my whole adult life. Hang in there! And definitely talk to someone about it. There are ways out of it.
Hi Uglow.I don't think any of us are coping better than you are and I'm positive that we're all struggling equally with our own individual health battles where PMR is concerned. I think the only thing some of us may be better at, is hiding it!!....and that's not always a good thing!
Believe me, you're really not alone. I have so many more days when I'm constantly fatigued, and frustrated that I'm not as able as I was prior to PMR, but you know, we are allowed to have some 'down' days, as long as we don't allow them to overwhelm our every thought and action.
PMR does feel relentless at times but even the worst of times eventually passes.
Managing PMR is challenging and most definitely not an easy road, but its best to stop trying to be the person you were and try to embrace the person you are now......PMR doesn't destroy the essence of who you are. You still have the same opinions, habits, likes, dislikes, etc and you still have that same love from those who care about you. PMR brings about an awareness though....an awareness that physically things are going to be a bit rocky and somewhat uncomfortable and that more thought is going to have to go into what happens each day. Trying times definitely, but we can do this....and why?...... because we all stumble, but not at the same time... and when we do, there's always someone here to pick us up.
You've had some really good advice from others and I would completely agree with them that you'd definitely benefit from talking to your gp about how you're feeling.
Sending hugs. 🤗 xx
Again Kendrew, you always say the nicest of things in your messages. I enjoy reading your responses to the ladies and so uplifting too. X
Thankyou ❤
I am trying to be ready me now as you said.the old me went walkies. Thank you. X
The 'you' that exists now is no less a person than the 'you' that existed pre-diagnosis. Limitations on our physical ability do not mean we have limitations on our personality. Thoughts, dreams, attitudes....the essence of who we are is connected to our perceptions of life....how we react and respond to people and not how much stamina we have or how long our physical endurance can last.You are still 'you' and in fact you're more than you were before because you're now a warrior with more resilience than you probably realise. Try not to see 'loss'....see the 'gain'!
Hi Uglow
I absolutely agree with the replies you’ve had and feel it would be wise to speak to someone about this, preferably your GP. Good talking therapies are worth their weight in gold, I think x
Thinking of you and wishing you all the best 😊
Nextoneplease x
Thank you everyone from feeling desperately scared and lonely I feelA bit more in the world
So to speak. Oh you beautiful person thank you so so much. I’m going to screen shot lots of these messages so next time I’m
Struggling I can have a look at and hopefully feel
More human. Xxxxxx
Good idea Uglow 😊 You are not alone, we’re all with you xx
So many of us will relate to just how you feel, I certainly do, every bit of it. It passes though Uglow. It won’t always feel this way. You are not alone. See this as time out, a rest, the value of which may become more apparent at a later stage. You are engaging and have people to love. It may feel like you are watching the world go by but you belong, just as much as anyone else. Sleep restores and bed is bliss. 🌸
Brilliant words from a fellow suffer. It’s so nice when someone gets it. Thank you.
My goodness your post reads just like my story,it still amazes me to read them because it's sort of freaky reading someone else explain what I often feel.I really do sympathise with you and wish beyond hope that a few magic words could fix your pain. Don't be surprised that you feel like you do,don't be surprised that after trying so hard you still feel the way you do because what you feel now we will probably feel tomorrow,or next week,or in a months time.
Try and be kind to yourself but just as important talk to your OH,he may not realise just how desperate you sometimes feel but if he did he may well be able to support you during the tough times,having someone there next to you is crucial at times such as this.
I would love to hear your description of someone managing this disease better than you ?
😍we all struggle at times,feel better at other times,but rarely feel on top of the world with this terrible disease.It's a long long journey for each of us,keep your chin up and travel with us,we need your company. x
I'm sorry it's so bad. I'm glad you've reached out, found solace, thought about what to do next time it's bad, to get through. i think chronic illness feels like long term repetitive grief. losing who (for me) I've been, who i might have been, losing the kind of connections to people i might have had, if i had been 'better'. I'm still me, and most days i know that, but it's hidden by this overlay of cruddy, with no removal in sight. and some days everything that i cannot do feels like a punch to my soul.
those are the days I'll tread water, hang tight, maybe not try and run the marathon, because they're hard days.
my gp was very helpful with that kinda stuff too. I've been seeing someone in the health psychology department now for about ten years. lifesaver. talking therapy, not crisis style, but a slow buildup of tools to use to get through chronic illness life. just now finding some trauma related to illness, and dealing with that too.
xx
10 months ago I never knew anything about it. I feelLike it’s robbed me. I just hope I’m one of the cases that goes 🙏🙏🙏🙏
maybe you will and maybe you won't but either way you are not where you were at your worst point are you? Therefore you are better than then nd every day is a chance to get a bit better and who knows what the future holds. Keep thinking and growing. That way every day is an improvement.
I know that feeling of being 'robbed'. Robbed of strength, endurance, career, abilities, capability, established hobbies, my figure! mental agility...and so much more besides. I didn't want to continue feeling so negative though and started to think about the 'gifts' it's given me.....the biggest one probably being time. Time to rest when I've actually needed it. More time to spend with family and friends. Time to process what's happening. Time to research my condition and medication. Time to focus on me and what I need.
You're forced to slow down and hold back because it's impossible to simply 'push through'. You can't live life at 90mph anymore. Having more time has created more peace and less stress and enabled me to really see things properly....I've discovered so many wonderful species of birds that explore my garden...beetles and insects I've never noticed before. I've watched the seasons change on the riverbank and meadow outside my front door. I've reconnected with old friends.....I could go on forever.
PMR/GCA can be very debilitating and it can definitely 'take away' certain aspects of our lives, but it definitely gives some things back too.
I know you'll get through this and eventually you'll be able to focus on what you still have and not what you feel you've lost.
I hope you're one of the people who makes a good recovery too. ❤
When I feel down I also think I how far I have come. Whilst waiting for diagnosis I was in so much pain. I couldn’t even manage to go up and down the stairs at first and then only with help. I have progressed so far as I am sure you have when you think about it. I hope you start to feel happier soon and do talk, to us and to your GP
This sad to hear, pop a long to the Dr and have a chat. i was a strong active happy person with a good life , but for a while i lost that at times ! Pain can bring us to our lowest really hard to cope sometimes, even with great family and friends you can feel very alone.Pop to your Dr for a chat. Chin up it will pass and your not alone , just a little bit lost atm. Best wishes Viv.🌷
Hi.sorry to hear how you feel.i know how you feel,I been feeling awful just lately.just want to do anything these day.get well soon.
just come on this morning and if it is any help Uglow, from a blokes perspective I can tell you I understand. Only this morning I was having a conversation in my head trying to find a way to explain to someone I need to talk to about this disease and what it has taken from me and I found my self crying real tears. That's just in my head. We all share the pain of the loss of who we were. We all want to improve. None of us know how much we can but we still try. There's also a possibility that the NEW person inside us might have some surprising insights if only we would give them a chance to shine through. That means fully accepting where we are and what we can still do. If we take that and improve those areas every day we are able to do that little bit more or different. Small steps give marginal gains and they all add up to a new and better perspective on our life.
Cycli you have been so supportive and helpful. Thanks x
Once again cycli, you have managed to verbalise what most of us would struggle to put into words. These are all commonly experienced feelings. Thank you.
I'm a bit wordy at times, but I like words if they are the right ones. One tries.
So nice to get a mans perspective too. We tend to forget about men's reactions to disease. My husband bottles everything up...wish men would open up more !
thanks. You are right in that we mostly keep it bottled up. I'm probably not typical. Never have been but suspect why some do. It diminishes their personal image of who and what they are "supposed" to be, (the knight in shining armor, strong one bread winner dependable protector etc.). All silly stereo types we don't really believe despite them being pumped into stories when growing up but occasionally in silly imaginary moments we would like to be the hero. After all, who wouldn't? When something like this diminishes our ability to even ever think of being "the strong one again" we try and fight it to get back to being that person. We are also a bit scared and maybe don't want to face this and so delay going to see the Dr.'s, hoping it will pass and we can just move on. It's all part of the same continuum . Some get it immediately and know it has to be addressed then and there but some will fight it until they no longer can. Some are just frustrated at not being able to get an answer despite trying for years. Some get angry and bitter, some just give in but most of us just bumble on being our usual selves irritating and caring in unpredictable manner. Stereotypes of M & F are just that and the bell curve blurrs at the extreme where they cross and only sharply defines these differences at the stereotypical exceptions of male and female. I like to understand how "things" work whether machines, systems, processes, or people. I've always been that way questioning everything an everyone since I can remember. To me it is all the same and an interesting puzzle. This disease is the latest conundrum which I am now thinking through. It's a challenge and I'm trying to find a way now to marry rheumatology with nutrition and sports science to rebuild lost and wasted muscle without aggravating the inflammation. Don't know if it will work but I've got some feelers out to friends. Who knows? It's important to be able to monitor cause and effect to balance energy spent without tipping that balance the wrong way. There are now quite affordable tools we should be able to use. There is always HOPE.
Hi. Been looking back through my posts. I felt really upset when first diagnosed. I found a very long post I did where I was overwhelmed and just taken a bit from it which I'll paste here. I felt so upset That I had some disease I'd never heard of. Don't think you cope worse than anyone else. You aren't. I think everyone's felt like that at some point.
This is what I wrote
Initially I was relieved nothing too sinister happening with me. Then yesterday afternoon I was feeling a little down as it sank in I have a disease. Worrying about being tired to work. But been working all along undiagnosed with no pain relief so sure I'll be ok. I need to put big girl pants on. I have friends with much worse autoimmune conditions which they won't have wanted either. so I need to belt up and get on with it. It's just tiresome being in pain isn't it. Thank you for taking the time to reply (and read this essay)
I felt better after that for a while. Think all the tests and wondering what was wrong took it out of me.. then it sank in had a condition and had a meltdown. Since lost my job and I'm going to try and use it as an every cloud situ and have a rest ! Keep talking on here
Sending a big hug because I think you need one. Sending another one for tomorrow, as you may need one then, too.....and so on, etc etc! S x
Very sorry you are feeling zapped and tearful. I last week had to have my cat put to sleep, never known so many tears, lost ones in the past and obviously had a good bawl, but this time couldn’t stop the tears. We went away for a little break and didn’t do too much, coffees and wanders. Have come home with hopefully different attitude and fond memories. Hope our replies have given you some comfort.
Ah, that's so sad Sue. My friend had to have her cat put to sleep yesterday, she was 17, such a good age. We never get over losing pets. I cried buckets for ages when I lost my poodle who was 15 so another good age. No more for me as I worry what would happen when I'm gone. Hugs to you Sue as know exactly how you're feeling X
Staplehurst..when you are gone you are not going to worry just try and make sure there's not too much mess for others to handle. My Gran, Gramp, Mother and Father all died within 9 months and I can't tell you what it was like trying to sort everything. Makes you think of things you maybe should have said. If our personal stuff is reasonably well ordered that's a good legacy and helpful. I've things that maybe need saying but not yet so I write them down as personal notes in an envelope. If I go unexpectedly like crashing off my bike or something, then they'll be found when they sift through, as they will, and they will have that thought.
I'm not sure if this is the same thing, but in the early, bad days of PMR for me, I would sometimes find myself sobbing, tears rolling down my cheeks. I am not a crier, even when someone dies I don't cry, tears have to be wrenched out of me, and I didn't think I was depressed. But then some little thing I couldn't accomplish would have me crying like a child. I was incredibly fatigued at the time, and I felt as though I just didn't have the strength to stop tears flowing out of me. I put it down to the prednisone. I knew it wasn't me. It passed as I slowly lowered the prednisone dose.
You are describing so many peoples journeys. Mine included. You may find it helpful to get the replay of the members day from PMRGCAUK. If you contact Fran or Candy I’m sure they will help you view it.
The Psychologists talk was fantastic and really helps to put into perspective the way you are feeling.
You will find a way it just takes time.
Lots of helpful suggestions here … here’s a hug from me. x
You are not alone. I am sure we all feel very down at times living with our health conditions. I agree with others on this site, please make an appointment with your GP to talk about how you feel. Keep us updated as we are here for you.
I understand completely. I’ve been crying this morning as I WANT to do things but CAN’T. So frustrating! Some days I can climb a mountain, others I can hardly get out of bed. It’s difficult to accept and we all understand how you’re feeling. Please be kind to yourself. Talking helps and every night when I lie down I run through the good things that have happened that day - can be as small as enjoying a coffee in the garden and watching the birds, but it all adds to my list of things to be grateful for and it helps my mental state. We all understand. You are not alone.Sending you love and hugs. xx
Do the "not being able to get out of bed" days, follow on after a climbing mountains day????
Should clarify that it was one day climbing a mountain. It was something I used to do regularly and felt ready to try again. I thoroughly enjoyed the day - wide skies, space and peace. Struggled a bit but I did it and was so proud of myself. Two weeks later it was pay back time - or I presume that’s why I am now so exhausted, but it was worth it - I think!
Hi Uglow. My mother in law who I love dearly. I know you so well and know this has really knocked your confidence. After being told in the summer that you were 5 years cancer free and to go and live your life poly has come along and rocked your world. I see daily how it has affected you and your my first thought and last thought of the day not to mention all through the day. This forum I can see has mentally being of great benefit to you. There is hope, remember everything passes nothing stays the same. You are definitely in a lot better place than you were back in January and then being diagnosed although you had a label then you are still adjusting to that along with the side effects of steroids and all the ailments they come with. Without you knowing your doing amazing. Some can’t even make it out of bed but you get up and do your very best to try and get on with it even though your body is screaming slow down. Your bed now has become your safe place where you catch up on social media and write the most beautiful stories, poems and sometimes just the best answers to all of my worries that i burden you with lol. Being diagnosed with fibromyalgia myself has made me feel that bit More connected in more ways than one lol. Your doing fantastic just remember don’t let the poly rule you and take over so much of your life that is still so bloody fantastic. Xxxxxxxx
Thanks Kiely I didn’t know you’d see this. As you know how much I hide from my grankids I don’t like them worrying. They should be young and free. Although I know they know ! this forum gives me a space to speak free. Your support is amazing I know you get it. Xxxxxxx
Of course I see it. I’ve been following all the posts like a voyeur lol. No seriously what would anyone do without forums like this. And your grandchildren know you better than anything they know and appreciate when you having a bad day. It’s not good to hide everything it’s ok to sometimes say if someone asks actually no I’m having a crap day. Can’t be a supernan every day. We got you xxxxxxxxxxx
You are the best. I love you and your understanding is invaluable xxx
There you go Uglow, what an amazing family you are blessed with.
Kiely definitely wrote some lovely loving words. You are not alone. 🙏👏
We also are your extended pmr family. All here to support you.
Yulik xx
My friend has had Fibro for many years and sadly steroids do not help this disease. She is in so much pain she has to remain in bed 2/3 days on most weeks....seems to affect her lungs too. And another friend has just been diagnosed with same.
Hi, I think you are just feeling a bit low at the moment, if it continues please see your gp, they will understand and know the right thing to go forward. We’ve all felt the same at some point during this disease, also covid hasn’t helped the situation, you will get through this time and things will improve.
Take care
Xx
Yes I have felt the same, comes and go’s it use to be bad weeks good days now it is getting goods months and bad days. I am not as active as I want to be, but I keep trying. I have taken up hobbies that don’t require me to be energetic. But is soothing to the mind all online, I get to be a part of a groups and talk to people. Even taken up drawing never thought I could. I love this forum, it was reading your stories and advice helped me get through the worse times so thank you for posting. I do hope things get better for you, 🤗
I've found Zoom to be particularly good for me lately. Have discovered I can attend talks given by the British Museum - which I have not been able to do since in London in 1973!
wow, never thought of that. great idea, links?
In the interests of helping us all find intellectually stimulating things to do during a pandemic while simultaneously dealing with a moderately disabling condition, here is my reply: I found out through a post on FB, but I think if you go to the British Museum site you'll find upcoming events listed. it isn't always clear that the events are indeed virtual, but so far I've listened to three programs, each of them different in format from the others. One was a discussion about how to live like a stoic. Then there was a dialogue between two academics about Nero. The most recent one was a presentation to introduce their current exhibition of works by Hokusai - of The Great Wave fame. Thanks to your reply I've just looked and there is something this Thursday. Unfortunately there is a time zone issue, and this is where I'm lucky I live in the Atlantic time zone. Noon in London is 8 am where I live! However all these presentations are available through YouTube as well, and two of the three I've seen have been scheduled for early evening in the UK, therefore better for me. First time I went we were able to see ppl's comments and there were people all over the world participating, even at 3 am! But last time only the host and presenters could see any of our comments.
britishmuseum.org/exhibitio...
brilliant Heron NS...definitely going to tune in to some of these...never even occurred to me. Have signed on, great.
Last year during first lockdown we collected a lot of ideas for things people could do online. Don't know if the post still exists. But I think the participatory aspects, the Zoom world, has developed amazingly since then.
Hi Uglow, I've not much to add just to say I understand. I have suffered from depression since I was 13. Of course, at that age and in the 70s, I didn't have a diagnosis. It wasn't until I had bad postnatal depression that I got help. Even then it was thought it would pass but never did! I didn't realise it was depression myself until I started to notice a pattern. It would come on slowly each Autumn then start dissipating around March. In 1997 we had to move out of our rented house and move into the flat we've lived in since. I had to register with a new gp. At the time I was going through a period of extreme stress. My gp referred me to a psychiatrist. I had a consult and Seasonal Affective Disorder was diagnosed. I was given medication, talk therapy, cognitive behavioural therapy and got a treatment lamp. It was only then that all the pieces of the puzzle came together.
I've had a few major depression periods besides the SAD but managed to get through it. My diagnosis with pmr when I was 46 triggered one but I didn't take steroids that time and it went into remission. In 2015 it came back. As soon as I started taking pred at 30mg I got into a bad depressant and my antidepressants had to be doubled to help me. It's only now 6 years on that I have gone back to my usual dose and only take 5mg of pred for the pmr.
I spent years not knowing or understanding why I always felt anxious, sad and unable to cope. Now that I know and understand the condition it's better. I can still get bad days but thankfully these are now few. I fall back on my mindfulness meditation and the techniques gained from my CBT. " It's ok to not be ok" is one of the best bits of advice I was given as a lot of my suffering was me beating myself up.
I hope that my story helps you. I would encourage you to go to your gp. Explain how you feel and ask for help. This is the most difficult thing you will do but feel proud of yourself for doing so. Acceptance is a great way to start recovery. Hope you get the help you need. Be gentle on yourself xxx
I had SAD for years with a nasty episode of burnout in the middle - until we moved here to the mountains in northern Italy. No sign at all of it now however much stress I've been under! I still hate the dark evenings - but I think the snow makes it bright enough in the day to keep it away. We don't get a massive amount down here in the village but I can see the tops of the mountains from the flat and that seems enough to make the sun light everything up 
Uglow,depressive moods[which are normal part of our mental repertoire] can creep craftily into depression,Part of depression is that we cannot see it,sometimes fiercely deny it.No one at all is immune to this.Please try and see Gp and say how you feel as it should be proffesionaly diagnosed.Good treatment is available..but you are in charge of yourself and can decide what is best.Why suffer more? Please seek proper advice. Blessings and Best wishes!
I think emotions overwhelm us sometimes because it is hard for people to see how we might be feeling. My family forget I have PMR and arrange things that are way beyond my limits. Then make comments that usually tend to make me cry. I do this away from them because I don’t want to hurt THEIR feelings. Stupid I know. Trying to explain tho is also tiresome because looks tell you they dont believe. Even my GP said I didn’t have fatigued.But hey ho it doesn’t last for long. Hope you get feel better soon 😊
I know. A friend of mine tried to get me involved in an organisation and i had a devil of a time trying to explain that I wasn't the same person I'd been five years earlier. In the end I agreed, only to quit nearly immediately. She hasn't asked me to do anything since!
Oh how I feel for you Uglow! In the early months since diagnosis we are processing our diagnosis of a chronic illness, taking (usually) higher doses of pred (which can definitely impact our moods), and learning how to adjust our lives accordingly. This is enough to make ANYONE cry!
As others have mentioned, mourning our pre-PMR life, and accepting our new life can certainly be a struggle. Many folks have offered great suggestions…the main one being to seek out professional help.
I will share that I cried….ALOT, especially in the early months. I actually still do find myself tearing up when I have good, sentimental thoughts, or during times of struggle. I no longer try to fight it….I feel what I feel! The support of a therapist goes a long way, and allows me to dump my feelings onto someone who is not a loved one close to me, who may be tired of hearing it.
Know we are here for you. We “get it” better than most. You are not alone in your struggles. Acceptance of our condition and making adjustments is key.
PMRCanada a big you x
Remember that comparing ourselves to others often leaves us feeling “less than” in one way another (whether it be what pred dose we are on, or how are bodies are dealing with PMR/GCA). We are all different ages, with varying additional health woes….some have plenty of support, some have very little. You are you, you are where you are at, and certainly not a wimp if you are surviving the ups and downs of PMR.
Things change. this will too. Mine is awful for ages then I don't notice it getting better but I can pick up things which I drop and I want to do more. for me talking doesn't help, it just reinforces all my negativity! everyone is different. I have animals and spend time with them, I never have too explain or excuse myself to them which is a relief. It will get better, just wait and find the things which make you happy, nice bath smells, new nail colour, a good book and a cup of cocoa. Focus on the things which don't cause pain. those are my coping mechanisms, not always, but mostly.
I hope you feel more like yourself soon, xx
I agree with all the wonderful support and advice that this group can always be relied on to supply. I would just like to suggest that you don't rule out a brief time on a suitable antidepressant. From my own experience I found this acted to break up the' log jam' freeing me to listen to and benefit from talking things through .
I was like that yesterday. Put music on full blast and just sat and listened.
That's my saviour music....and I love a real mixture , and yes loud sometimes or headphones....well I am a teenager!..😂
This forum has shown just how much we are affected in the same way.....we are not alone....
Chronic, debilitating illness is so difficult. I think we all have teary moments and days. There is a lot of loss to be grieved. When i feel teary, I just allow it, even embrace it. Acknowledgment of sadness is not a bad thing! Sometimes it is an opportunity to sift through the losses. One can find acceptance in their changed circumstance and still take small steps to move forward. Try to find joy in small things. Dwell in the places of joy. Sit in a sunny window and listen to the birds song. Simple pleasant things. If you find the sadness consumes your life, then seek help. Sometimes we need help to lift ourselves out of a hole. Don’t feel bad about feeling bad!
Warmest wishes.
Thank you x
Your words really resonate. I’m sure many of us have felt exactly what you describe. I’m having issues with focus on my Uni assignments. I’m sure they don’t believe the states I describe. I feel like I’m under water and the good times are like getting to the surface for a breather. I had random tears for no reason. Discussed it with GP. I was put on anti depressants. They helped smooth out the unexplained emotional swings. Do discuss with your GP. Wishing you well.
This thread has helped me. I am also a depressed person and I call myself a crybaby, because I cry every time I walk from one end of the house to another. I love the stories of nature and Thyssen the cat!
I honestly think the pandemic and disruption of our usual supports has caused a lot of the emotional overload many of us are feeling. Today I started reading The House is On Fire, a book by and about Greta Thunberg and her family. I try to read aloud to myself for about 15-20 minutes a day (as I have so little in person communication these days and trying to keep my voice working), and kept having to pause as I wanted to cry at nearly every page.
As for the PMR/pred aspect, I don't think I've managed it particularly well, but it's definitely been worse the past couple of years.
I think it's very important that we give ourselves permission to acknowledge we don't feel well, and even on a good day we aren't really the way we were before. People come up with their own coping strategies so I certainly don't have specific advice for you, but what got me through the pandemic months turned out to be rather serendipitous. I moved in early 2019, leaving a house and moving into a condo, and have had a lot of trouble adapting to this. When the new year 2020 rolled around I made list of resolutions, several things I had to do every day, and additional to exercises and walking which I was very good at doing daily already. When first lockdown occurred and none of us really knew what to expect (have to say still dealing with covid nearly 2 years later was not on my radar) I quickly realized that my new year's resolutions were a real lifesaver. They covered hobbies I'd let slide, and included trying to learn new languages. Someone else would have different hobbies, or they cook new things, and maybe take up mathematics, or some other subject of choice to learn. Some people have been writing every day, but I am saving that for the 2022 resolutions (so I tell myself 
). The point is, once I started doing this I felt compelled to do at least something of every task every day as I'd resolved, and it's been kind of nice even after all these months to have these small achievable goals waiting for me as the hours go by.
❤️
Hi UglowI know it's a while since you posted your post, but you had so many replies I didn't think I needed to add to them. However I couldn't stop thinking about your post as you personified so much of what I was feeling , up to and during the summer.
I too just used to burst into tears at inappropriate moments, like when out for a meal when the girlfriend of a close friend who clearly had not been told there was anything wrong with me asked how I was enjoying my retirement which has been a complete and utter disaster so far.
Pmr and covid restrictions Coming in at roughly the same time was just the final awfulness. I too have a garden I cannot tend to, but go about picking up leaves and pulling blades of grass out of the new flower bed my daughter and husband made for me . I just told them where to put the plants.
Even someone being kind or saying something nice would set me off. All the things I used to do for enjoyment ie crafts, bike riding , walking, seeing friends just stopped cos of covid and the loss of ability to do these things. I couldn't even read or use my tablet due to the ache in my neck when I tried to keep my head at a particular angle.
My Gp suggestion was to put me on medication which I didn't want to do. I tried cbt but it didn't actually address my problems, and I just cried ll the way through that too !!
Every time I tried to reduce the steroids, things got worse and finally having got advice and info from here, I thought it seemed like I was and had been on too low a dose. So the rheumatologist suggested a tiny rise in meds, which didn't make any difference, so i followed the lovely ladies here's advice and went higher and then dropped back down. I now feel like a different person.
I have been given some new neck exercises which have helped with my ongoing neck problem, and even my leg going wrong hasn't phased me.
I have started to do little things to prepare for winter.
I have renewed my wardrobe to include charity shop cashmere jumpers, as they are light but warm.
They are in bright colours with bright coloured silk scarves as my grey jumpers of last winter were so depressing but there was very little i could wear that was not too heavy and no shops were open.
I get a bit of colour therapy every time I look down.
I have also got a SAD prevention lamp incase that can help during the dark gloomy winter days.
I have looked for little projects that I can take my time over like decorating a storage box, and lots of planning will be involved before I do it.
Making small papier mache vase for feathers, and that kind of thing.
Last winter was so bad, anything that makes this one different will stop me remembering last one.
It is said that the higher doses of pred can cause a kind of depression and I do wonder if that contributed towards my state of mind as well as the frustration of my inability to do anything.
As the wise pmr ambassador has written, we need to grieve for our old life, and I found this to be very true. I think I am now able to maybe not exactly embrace my new life, but at least learn to enjoy the new things without always comparing it unfavourably to what I used to be able to do
Now I have a sort 0f weekly program which keeps me busy ish, with tai chi replacing an exercise class which I cannot manage any more, My 1st class I spent in tears, but since then, I enjoy each one a bit more each time I go.
So my message to you is that it does get better, and you can help it improve by adding little goals which are definitely manageable . I sat down for the 1st 3 or 4 tai chi classes; just getting there felt like such an achievement. Now I can stand up for the whole thing : )
Each success may spur you on to the next thing, and when it took my mind off my misery and focused on doing something else, it lifted my spirits in such a wonderful way that I hope it may work for you too.
Anyway take care and hope some of this may help you.
Carol
Thank you so much Carol when people get it the whole thing seems to a bit easier. It’s not always a great road but one we have been dealt. I feel you though your communication. Some days are just so hard mentally and physically but you know what. We will keep on we will kept trying yes we will cry yes we will have days when all the lights feel like they’ve gone out. But big but I know you will move forward every day like me. We will come on here and rant we will struggle but we will get better one day. Let’s all stay united. Let’s be kind to ourselves and each other. Today I’m strong but I know I’ll be back crying for your help. And I know you will teach out to me as I will For you.
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