Very difficult post to write but I need to write this somewhere.......here, I know you will understand.
For last couple of weeks I've been tearful, frequently throughout the day. I have been unable to put my finger on why....I can come up with several ideas but it's not stopping me.
I know I am feeling incredibly frustrated with my physical limitations....I feel more limited now than I think I have before. Maybe it is post virus. I just wish I could stop.
It's Spring, there are gardening jobs I'd like to be part of but just wheeling the wheelbarrow 200 yds with leaf mold in was more or less me done in. Mark is NOT a gardener, so anything that I want doing I have to supervise. Asking him to do jobs (he's 70) seems unfair at times. He's very understanding but I just want to be well enough to do stuff. I had to get him to use the Garlic press just now cos I can't squeeze the damn thing
As a former psychotherapist, I know I am not depressed, but my mood is low. I feel like I am mourning the loss of my physicality and have become an observer in life rather than a doer. I wish I was 40! Why do I have to be almost 63 and feel like an 80 year old!
Thanks for letting me let off steam. I have a friend, ex colleague I can email which will help too.
(Doing this without swear words was hard.....I am a swearer when I am angry/frustrated.....).
Written by
IdasMum
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I hear you. Low mood is part of PMR - and you know as well as I do that you are grieving what you have lost. We all have done.
It is spring and we want to DO and BE - and it isn't going to happen any time soon. Of course it hurts.
However - I couldn't even think of wheeling a full barrow 200yds. But I might manage 1/2 a one 50+50+50+50 and do it twice.
I haven't been able to use a garlic press for many years - there are easier ways to deal with the wondrous bulb! Must be able to find a few with google...
And the reality is, even without PMR, we are now 60+ and not 40 and that is never going to change.
I can certainly understand and sympathise with you, being near your age also, I have had PMR for 6 years, and previous to that other ill health problems....I always say to people my head doesn't fit my body!....and it doesn't....I am doing all the things my "well" friends are doing, but only in my head. My sister has RA, got it at 48, we both talk about our past "fit" lives, then I stop us and say, we are torturing ourselves, and have to wait for some better days....and yours will come, and yes, we all get tearful!....
May I suggest you get a gardener as my sister has, a lovely young girl, if only for a season to stop things building up and worrying you more....
We all "get it" on here, as those times come to us all how you are feeling....I don`t know how long you have had PMR or GCA, but it will get better.....and swearing, boy it makes me feel better! Hope I haven`t ran on too much, but I can empathise with you, if nothing else....
Keep us posted....
It's frustrating when you can't do what you want to do or feel you should be doing. I am coming off a month long funk where I just didn't feel quite myself mood wise. Like you say it's not like a depression and I just felt irritated and blaaaaah.
I used to grow my own veg in my garden before fibromyalgia struck. My garden fence has fallen down and the grass is often 2ft high now. I can't afford anyone to do it for me but fortunately my neighbours try and have a go at it when they can. I would love to get raised beds about 3ft high and grown select veg again. Going outside and picking things for tea is brilliant...and tending the peas and eating them fresh off the plant is yum. I have lost my track of thought now.😲
If you want a good swear feel free to pm a list of your worst and get them out!! Can't guarantee I will read them but it gets them out.
I got a round plastic garlic press. It's two halves that is about 3inches in diameter but with a petal shape. It has plastic spikes inside. You put peeled Clove inbetween the spikes...i chop them in half..put the two halves together and twist backwards and forwards. I usually just put a drop of water in...half a teaspoon...so it comes out easily. When you have finished washing up you just twirl each half in the hot water. Or if you have dishwasher just put on top shelf. It was a couple of pounds on Amazon. Well worth it as I can't stretch my hands far enough to grasp normal press nor squeeze it..
Haha! Hidden your garlic grinder sounds just like a weed grinder 😯😂🤣
NOT that I know what one of those is! I saw one once in an exhibition. Yes that’s it, a recreational exhibition 😙
I have one of these gingerandgarlicgrater.co.uk... The silicon tube removes the paper skin, and then you rub the clove on the teeth of the plate. Easy peasy.
Couldn’t open a bottle yesterday. Passed it to hubby. He couldn’t open it either.
Bottles and jars that refuse to be opened often respond to a bang on the edge of the lid with a metal knife handle or something similar. It releases the vacuum, (if you are lucky!)
Got so frustrated with one of those squeeze the sides tops a few weeks ago that I was about to give up and slammed it down on the kitchen work top in irritation and voila! off it came.
I only buy small jars and have this rubber plasticky thing that I can manipulate to open them. The old jar opener I had is impossible now. I also wouldn't be without my electric can opener despite a lot of cans having ring pills. I have a helper for that too. I have a spiked chopping board that holds veg though they ha vent considered how hard it is to get veg on and off the spikes. I have several grabbers around for bad days. One on each floor. I have a great shoe horn that grips the shoe as well as letting you slip it on. I have little handles on all my electric plugs. Soon to be replaced by remote control system. I have a few bathroom helpers too. I may not have to use these helpers all the time but as I am by myself I like to have everything to make life easier on my reasonable and bad days.
Nothing to clean really. Paper coating comes off of the clove, place skin in bin. Rinse tube if you can be bothered, but as it’s only ever used for garlic.....🤭
Yes you can get tubes and jars. I don't mind the Lazy range of chillies ginger and garlic but I like the fresh versions more. In the winter it's worth having them in if like this year the snow comes.
I agree that the low mood is a common theme with all of us; we think we should be enjoying our "golden years." and we are not. I can cope with some pain, but not with the fatigue and not having the energy to even make an appointment on the phone that I need to make.
Good idea, a gardener; at least temporary or part time. All I know is that I have gotten worse under the care of rheumatology; I was in perfect health until 3 weeks before symptoms began per my spirits and routine blood work. What could have happened in those 3 weeks; Sometimes I think that 1 cortisone injection could have gotten me over the blip.
Oh boy, I think it's a season for crying right now. Move over and pass me your Kleenex, I'm right there with you! Could it be that our Winter has been so long? My mood is also low and I know it's not depression, but oh my I'm having a pity party!
FIrst, don't wish for that 40 years old. If so, doctors would be saying "Well, it can't be PMR or CGA as she's not yet 50" years old.
My lives-out-of-town sister called yesterday to ask how I was doing. After I got done describing -- no, strike that and insert COMPLAINING -- she asked, "Does (her husband), need to come out to install some handrails?" Me: "No, the 80 year old that I bought the house from was kind enough to have had that done. And yes, I use them". Her: "Did you see the pictures of (insert nieces name) new house on FB? Isn't it lovely?" ME: "Yes, I saw them. OMG, THOSE STAIRS!" (Out of that beautiful room with high ceiling, large floor to ceiling windows, my focus went straight to the TALL staircase and missed the beauty of the room wondering how I'd ever get up and down those stairs.
And the cherry on top of the pity cake is that I just had to call the elderly care center where I've been doing a 2 hour coloring group each Saturday for close to 4 years to say that I am no longer able to continue it because of PMR. Wheeling 10-15 patients all over that large building, bending down to put on their brakes, release their brake, pick up dropped crayons, moving wheel chairs in and out as people come and go, constantly up and down out of a chair, has become too much for me to handle. Fortunately, I have an assistant that I can pass it on to. But this stings! Stings BAD!
Falling off bench that I was sitting on with IdasMum (I think she pushed me off): "Ok, I'll quit complaining. Just know that you aren't alone right now. But please, if you have any influence with Mother Nature, would you ask her to send the Sun my way. I think that might help my mood.
Or start one. Have your girlfriends in for wine, appetizers, and an hour of coloring. Get some adult coloring books (tear them apart), colored pencils, crayons, and markers. Put some music on in the background.
Or just get supplies for yourself and do it more as a way to do an alternative meditation. If you allow the process to take over, it’s very relaxing.
I have done lots of meditation and self hypnosis in the past. The stupid thing is when I was most stressed I felt like I didn't have the time. It's stupid how the brain works sometimes.
I totally get that. I am unhappy with a room that I moved some new furniture in. I need to have someone come in to move it out and my old back in. But asking someone to do that (or paying someone) is stressing me out. So I remain unhappy and slightly stressed because it keeps coming up in my thoughts. What a crazy loop! Procrastination in this case is not a good thing.
Hope you get it shifted soon. I need my staircase repainting but that'll be a while so I will let future me worry. Today I am watching my recorded bits of commonwealth games. Good luck!!!🌻
We do have a few nice days before old man winter’s snow hits us again! I’m hoping warm, sunny weather will help me. I go through a crying thing now and then too. Then I get angry with my situation and hate when PMR wins. Sometimes it does win. I just do the best I can.
Our weather has been crazy, hasn't it? I cannot believe that snow is a possibility for Saturday.
Once the weather does turn nice, I think we should find a little outdoor venue where we can sit in the sun, have a glass of wine/tea/coffee, etc. and congratulate each other for the successes we've had. You'll be able to recognize me -- I'll be the one with the duck waddle.
On a side note: Did you know that they make adult coloring books that the coloring pages have swear/cuss words on each page? HA! You can find them on Amazon.
Do they still make the colouring books where you just put water on the outlined spaces and the colour comes out of the page. I remember these from my childhood 65 years ago. I'm 70 going on 71 now, and wondering when my GCA is going to stop, which I've had for 4-years and
5-months. I'm on 7 mg of Prednisolone this month heading downwards again by .5 mg every 28-days and depending on the level of the CRP blood test.
On the subject of crying I did a lot of it after Janet died but I find that I am very emotional now and the tears come for no apparent reason. A phrase in a book, a picture in a magazine, an emotional moment on the television I watched the "Full Monty Ladies Night" last week and wept buckets whenever one of the stars was recounting their experience of breast cancer.
Oh, I remember those water-coloring books, too. If they still make them, I haven’t seen any. I’m going to have to explore that.
I’m so sorry for your loss. A similar thing happened to me: an event unlocked the floodgates that had held back crying. Now I find that my emotions are more in-tune, exposed, etc. and tears come easily. Sometimes too easily. But I think it’s better than having them buttoned up tight. If I’m ever in a Hallmark store getting weepy over a card and see a gentleman getting the same, I’ll ask, “Mr. Elmes, is that you?” 🙂
I remember from my childhoood those water colouring books in fact they were pages in the Rupert Annuals. I collect Rupert membralia to this day. I think that’s the thing that depresses me the most the fact things are so different in those simple days I felt full of life. Now I feel like giving up sometimes as everything is a struggle and the good days I do have are out weighed by the bad.
Normal to shed tears. I also know the frustration of not being able to do 'simple' things. I still have shouting days. My neighbour is deaf.Am sending you lots of BIG hugs. x
Dear Ida's mum, I second everything that others have already said. We totally get grieving for what you can no longer do. But PMR is a funny thing. Once you get onto the correct dose of pred for your needs, your abilities will return. Ok, you won't be doing cartwheels but you will feel 'normal' again. I've had PMR for 3 years and in the early days I well remember the crushing feeling that my mobility was drifting away from me. I now feel 'Normal', I didn't have to give up my job, which really worried me. You will get there, promise. Lots of hugs from me too. xxx
Thanks everyone for your comments. It really helped to post here and know I am not alone.
I have'employed' a gardener to come and do some projects, I am waiting for him to come....I think once he starts and completes at least one of the projects I will feel better.
I realised, once I'd free'd up some energy by removing all this rubbish from my head, that I am probably withdrawing slightly from the extra 2mgs I took on Sunday evening, might explain why today is worse.
After I wrote on here I went out and sat with Mark for 20mins, had another good cry and discussed some of my problems. My problem (from childhood) is that I feel self indulgent when getting my needs met.
I sent a lovely ranting, muddled and sweary email to my ex colleague....and he and I have just had 30mins on Skype. I really do feel much better.
I will check out a new Garlic press and see if I can order some better weather. We've had a cloudy, cooler and showery day after some lovely sunny spring like weather.
I totally agree with all of the amazing, funny, but disheartening stories above. I love everyone’s sarcasm . Makes me laugh. Please know that we are all with you. Each of us with our own struggles. At least we have our sharpness of mind.. sometimes at least.. and the ideas above are amazing.. I do think finding someone to do the light or heavy gardening would be so great for you. You seem to like the outside and etc.. Remember to rest your mind from the disappointment and think of all you CAN do. As a used to be Nurse a month ago . Shocked.. for me.. I find that taking stock of what I can do, rather than the other helps me.
I'm not one for crying, but I've been feeling kinda low on and off, too, for the last few weeks. I think it has more to do with the awful weather we've been having in New York since the beginning of March. It was actually warmer in January and February that it has been the last few weeks, and we had all of our snow after February 28th. It's exhausting when the storms come back-to-back as they have.
I know that I've come along way in the 18 months I've been diagnosed, and I know that the weather will soon improve (and directly after we enjoy those couple of very fine weeks we'll be complaining about the heat and humidity).
So like my daffodils, which are currently shivering, am waiting to burst into bloom. But I won't be doing the heavy work. That's what younger people are for. I'll be doing only as much as I can, and as much as I enjoy, without paying an awful price for showing off. Let someone else turn the soil in the garden. I'll plant the bulbs and the roots and the seeds in the nice soft ground that's been dug out for me.
You'd be surprised how many young people are willing to take on some of the garden drudgery in exchange for gardening lessons, or garden produce, or a home made meal or some cakes and pies. Ask around. You'll make new friends and pass on your knowledge and experience. too.
IdasMum are you still doing your 10mg for 2 days? Maybe you need to return to all 10mg for a bit, til your nasty virus is truly behind you? Those post viral weeks can be very draining, frustrating, and for me my mind is willing long before my body is able. That turns me into a snappy monster and no one is safe 🤯
I love gardening and growing veg. At the beginning of last year I was offered part of an elderly couple’s garden, as they were unable to manage it. Unfortunately I was coming down with PMR and it was beyond me. But I wonder if you could do similar? There might be a youngster who doesn’t have a garden, who would love to garden, you could impart your experience, and share the produce? Could work well for both parties. Just a thought.
I have to use hubby and walk round the garden pointing out weeds, so he can remove them. I fully intended to do a full afternoon’s gardening yesterday. But after 45 minutes I was done in.
I’ve often been on the edge of tears during PMR, but I won’t let them spill for fear of never stopping!!! I think your method of having a good cry is probably the more healthy option.
I am still on 9mg....and may NOT add anything to that now. I really like having the brain working and no discernible fog
I find with tears that they do stop and it is so much better for our mental and physical health to let them out. I am so pleased with myself.....I haven't cried for 2 hours now
Btw...in case I hadn't said...love your profile picture.🤗
Firstly... YEAH!!!! I am a swearer too!!!! And I am so impressed that there was not even one F*@k uttered above! I could not have shown that much restraint! Check this out:
Secondly... I believe (but have no formal training or degree to back me up) that we are all, to some degree, "grieving." We are experiencing "loss" and we are moving though, into, out of and around Elisabeth Kübler-Ross' Five Stages of Grief (there may actually be 7 now)
Your statement, "I wish I was 40! Why do I have to be almost 63 and feel like an 80 year old," really hits home with me and perhaps is a much deeper question than it appears to be; as well as one with which we are all grappling... our own mortality.
In being diagnosed with these invisible, hideous, debilitating, diseases, we have all lost (perhaps forever) vital pieces of our very essence!
By the time these diseases are done with me, I will most likely be in my late 60's... I will have naturally lost a lot of my strength, stamina, physical ability, maybe some of my mental capacity, my looks, etc, etc, etc.. Had these diseases not come along (damn them!), when I was 63, I perhaps had a few more good years...
I too cry... a lot. I too have become an observer, no longer a "doer." I too have to ask for help with household chores like making the fucking bed... that kills me.
As an End of Life Companion (aka Soul Midwife) and someone who has lost all the members of her original family... I know grief. And this, having PMR and GCA, and having my entire life reduced to "good" hours/days and "bad" hours/days, sure and hell feels like me grieving the loss of me!
Hahaha... yes, if you're hearing me swear with my Boston accent its especially evocative. 🤣🤣🤣🤣🤣🤣
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I don't think you were around when I told the story of getting a slice of birthday cake from my lovely Muslim next door neighbour. I sent her a WhatsApp message saying thankyou it was lovely and gave her two thumbs up. When i put my reading glasses on I had sent her two middle fingers. Good job she saw the joke.
oh oh...I just laughed out loud. (Not good as I'm at work and now my coworkers are probably wondering what I just laughed at.)
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OMG, that is hysterical! 🤣🤣🤣🤣🤣🤣
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My eleven year old nephew almost fell off his chair when I told his parents in conversation. That's when I knew he was growing up. The younger ones didn't get the joke.
I used to throw the 'f-bomb' out every now and then. Weirdly, it made me feel like 'a bad girl'. Then it slipped out once inappropriately. I decided maybe I needed to play closer attention to how and when I was using it. The 'bad girl in me' said F-that! I put a muzzle on her.
And I feel your's; I lost all of my family in the last 15 years and assumed responsibility to oversee their care and manage their personal needs and financial management. But I had the energy to move mountains to improve what they were going through.
After grieving their losses, I expected to be free, and now this; but I am thankful for a good second husband and a male nurse cat, always by my side.🐺
Oh gosh, I remember having that energy "to move mountains to improve what they were going through." God the strength I had... Now I can't even change the bedding, without help! : )
You feel awful because you’re not well, it sounds like you’re active and busy usually. You want to do the jobs but have no energy and are suffering the frustrations and sadness. Hopefully no pain if steroids are working. Generally feeling low and sorry for yourself. I remember that we’ll. You can’t see the end of it at present and think this is it forever? I know how you feel, as do others who’ve suffered PMR and have had to rely on the steroid medication.
I’m 64 now and have been fully recovered- back to normal!!! - for nearly 2 years. Think I got PMR when I was 58. It is possible to recover I have lots of energy again and can do everything again- hours of gardening, circuit training, aerobic class and light weight training. No PMR pain or relapses for nearly 3 years now Of course I know I might relapse as others have before me, but so far no sign of that happening. Be kind to yourself- rest, sit, sleep read? Think of treats you can have to cheer yourself up. Tv, radio, friends round,, walk /sit in the garden, gentle swimming. Maybe pay someone to do some of the garden for now? Partners do find it hard to understand but usually ‘get it ‘ after a while - just ask for help and try and keep calm if jobs are not done to your standard!
I got so much help and support from this site- keep posting and lean on your “new friends” for answers. One thing posting does is it stops you boring family and friends with it all......
Thanks for sharing this. Love happy outcomes and hope you keep going like you are.
Ok - this winter is long! I am in the mountains of West Virginia right now and it is 32° F or around 0° C I guess. More like the end of February because it snowed today. I am heading back home tomorrow to North Carolina where it will be 80° by Friday. Better days ahead for all of us!!!
Despite the cold I am going to bundle up and go walking right now, that always makes me feel better. Just hope no early hungry bears are about!
Well, I'll tell you what. I get my 15 minutes every morning in the shower to feel sorry for myself. Then I get about my day - whether that's Saturday lying on the couch watching old movies, or Monday - Friday hauling my butt off to work.
I've decided that this is my chance to do things differently than I ever have before.
I now leave the office at 5PM and am home by 7PM. I'm looking forward to the warmer weather so I can sit on my porch and enjoy the evening instead of sitting at my desk doing the work I have now delegated to others so they can develop their careers.
I now set my Roomba to do the vacuuming when I'm not even home. I'm waiting for the Scuba I ordered to wash the kitchen floor. (I wish they had one that would climb the walls or scrub the tub or do the windows. I'm sure they won't be long getting those to the market.)
I now wear sneakers, sweaters, tunics and leggings from an on-line clothing site instead of Armani suits and 4 inch heels when I'm going to the office most days. (I keep the straight jackets only for client meetings, and I wear flats.)
I now have trained The Lucky Dog not to pull the leash when Mommy's walking her. Now we both get a nice leisurely stroll in the morning and the evening.
I now don't know whether to swim or fly I'm eating so much fish and poultry instead of red meat. That's mostly due to hubby's heart condition, but I must say that cooking and cleanup is a lot faster and easier than before without the roasting pans and bernaise sauce.
So what I have found is that I have more time to think, to read non-work related books and articles, to watch old movies and a few new ones, to stare out the windows on the ferry at the harbor watching the sun go down, to chat for a few minutes with friends.
And while I do miss the body I that let me chase buses and subways in 4 inch heels with a briefcase, that let me leap large snowbanks in a single bound, that let me haul shingles up to the roof and top soil out to the yard, I'm enjoying the slower strolls where I get to watch the birds and the squirrels and the neighbors cats. I'm savoring the time to sit and chat with my hubby as the night creeps across the living room, or watching the snowflakes drift gently down or fly violently sideways . And I'm enjoying just sitting still, thinking my thoughts.
There's something funny or something beautiful to find and enjoy if you're looking for it. I was always too busy before. Now I have time.
There are many things in this world over which we have no control.
The one thing we do have control of is our attitude toward whatever we're facing. This is not the worst thing that ever happened to me, not by a long shot.
It's not always easy. But it's a lot easier than hauling around that big burden of sadness and anger and and regret and disappointment and loneliness and fear. I put down that huge trunk of junk, and it's so much easier to keep walking. Or to just sit.
I encourage all of us to feel our negative feelings, but to put a limit on how much of our time and energy we're going allow to be consumed by them.
There are so many better things for us to do. There's so much love for us to share, kindness to give away, beauty to appreciate, and good-old-rowdy fun to be had.
Since I had to start walking slowly with a stick and now a crutch I have to walk looking at the floor/ground. I have actually found @ 50quid in notes in the strangest of places. That wasn't my main thing. Lol. I tend to walk a bit then stop and look in all directions and enjoy what I see. I can now track the prints of feet and over animals. Slowing the pace of life down is not a negative thing. Besides if I try to look up whilst walking I trip A LOT.
I agree with the idea that there is a set time limit on thinking about such issues. Not always possible when it's bad but something to aim for.
A recent sermon title; Rise and shine or rise and whine🤔
My husband and I have enjoyed motorcycle riding since the early days and we have been married 55 years, him doing the driving, me doing the riding. I loved it, sitting there watching nature pass by. I even liked the bad weather rides as it gave me something to talk about as the years passed
Now, due to PMR/GCA and arthritis in my hips I am unable to ride. I HATE that he can still do it, but I cannot.
That's so funny,my reply to you saying back "Let's do that instead". Was printed right underneath your comment of"find a new way to grab that man....".Sorry but I really don't have the energy!!
I could relate to your story! Having sold my business last week to 3 men and retired my beautiful briefcase and heels to live life in sweats, jeans, sneakers and flats, I’m grateful for the next chapter. Without PMR, I would still be on the old treadmill. I found the secret to feeling young and beautiful! I joined a group of old people at the Y. Those 90 year olds give me more compliments and wisdom than I can handle!
I hear you as well! One of my annoyances is when my Mom, 30years older, tells me she knows how I feel, she feels the same.... nice that she's sympathizing but really!
I found as I creep the dose down that I can get teary when I've pushed things too far. I need to take more rest days until the body adjusts or get some other stress sorted out, or go back up just a tiny bit. I have found that it's a guarantee if I have a sinus infection (twice now since PMR started)
Do something nice for yourself and let your body rest. You'll feel better soon.
I have also found not being able to do the gardening as I used to WHEN I WANT to has been very frustrating
(I hav some 'sticky keys on my PC at prsnt and kp having to go back and fill in th gaps - I am thinking this is a great 'metaphor' for having PMR/GCA - things are sometimes only 'half' there !!)
Anyway as above you can see what I mean - and nobody will sympathise more than with another gardener as gardening has also been synonymous with 'life' and 'living' for many of us.
I also understand the whole mood thing - I got very 'low' for a few days recently - you know - decided I'd just had enough and it was time (after 16 months of this) to get back to 'normal'. This must be an inevitable point we all reach or move in and out of at some stages of the whole diabolical process so I kept telling myself that !! But regardless the frustration is unavoidable and a few tears are really necessary I reckon. Shouting expletives CAN help but swearing at my canary doesn't seem to have much impact - he just goes on pecking at his seed and my my partner has heard it all before and before ....
Time will pass - this will pass - and one day you will be back there in your garden and this will seem like a long distant 'blur' - and hopefully sooner than later ... meanwhile wander in the garden and pull out just a few tiny weeds here 'n there - any little thing - it will make you feel better !
So sorry for you, as a newby to PMR and not normally a crier, got very upset yesterday when trying to describe it to my son. It is good for you to get it off your chest somewhere others understand.
A few punchy words are a great help, always found it interesting that swear words are such a relief, they pop out when no others would do the trick. Seems not everyone does !!
As for the garlic press, I have a wooden steak mallet, never used it for that, but perfect for garlic, crushes it up, and much easier to clean, can relieve tension and even better if swearing at same time.
It’s probably unfair to the drug that helps us, but I have a new swear - I would refer to your mood as preddy fed up! I seem to be very lucky in that I can do quite a lot more than many, but still have to cut expectations by at least half. Even then they hurt, but I feel better afterwards.
If I can do just a little bit of aerobic exercise, enough even to make me a bit breathless for a while, I find it helps my mood.
Agree with the suggestion that moving the barrer half full a quarter of the way might at least make you feel you’re achieving something. The longest journey starts with one step etc etc. I wonder if Confucius swore sometimes.
There is hope you will get over your pain, it’s 6 years this August when my pmr started I needed help to do most things. I am a hands on person as l can not afford to pay for tradesmen to do that needs doing a but now I have been off the pred 6 weeks now so there’s hope you will get over it.
I have to say, I do get quite a bit of aerobic exercise. I get out of breath climbing the stairs....and sometimes when I go down to let the chickens out, or going down the drive to the post box. Not always, but on my less well days I can do breathless
The house we live in is big compared to a UK house, so I walk 2/3000 steps each day (on a bad day) to just do my normal cooking and chores.
Good Morning ldasMum,l am sending you lots of virtual hugs.l have spent the last few weeks doing the same. You have knocked the nail on the head with how you describe your feelings and want to be the person that you were before this horrible condition. I wish Family and Friends could read some of the posts on this Forum.My medical team say that l do All l can to help myself but my Family think l should just STOP the steroids.Let them try it.
Sorry ldasMum my arthritic fingers clicked the reply button too quick.l wish you all the best and hope you feel Better soon. I am going back to my Osteopath today for Gentle massage and ultrasound especially to Upper arms and Shoulders.take care trish29
Hi Idas mum, we all know only to well what you’re going through. I’ve have had this dreaded lurgy for four years now and there’s no sign of it giving up its grip on me but, I know this won’t apply to many of you but I was feeling so ill when I was taking the pred so I weaned myself off it six months ago. I’m still suffering with osteoarthritis, diverticulitis and fibromyalgia, pmr and all the pain and crippling effects it has on me, however, since stopping the pred I feel a lot happier which helps me do things that I felt I could no longer do, be it in small doses but nevertheless I do it. I’m 67 now and not ready to give up yet. So, with the help of a pain killer or two and positive thinking, you can do things in your own time and in small doses. And yes, it will whack you out, so keep smiling(if you can) and carry on.
Another thing is if you contact assisted living for the elderly they might be able to help you with your gardening, or even try the local council. There are also many people out there that will cut your grass and tidy your garden for £10 or £20
Hopefully you’ll feel better soon and instead of being tearful, smile!
I’m also a swearer in the right circumstances! Mourning the loss of our former self is part of accepting our illness. A gratitude journal has always helped me and doing only what brings joy is the answer. Try Tai Chi/Quigong, low impact aerobics...start slowly. Join groups. Last night I did a drumming circle and watched a belly dancer. My attention span is that of a 2 year old and I left early. So what! No explanations necessary.
Crying is good. Stick with this compassionate group and watch the cloud lift.
I'm sorry, but I have to disagree with teesher above. After 6 years of PMR, I have never felt better nor have my abilities returned. If only. No, the challenge has been to accept what is and not hanker after what was. I have been able, with some help, been able to find a positive place, see the new opportunities and try to embrace change, most of the time.I am giving up my counselling in July for ever- this has been a really hard decision, but I know it is the right one.Who knows where this journey will take me next.
I am, however in a dip at the moment, having had a flare at Xmas which was more protracted than I expected, then the coughing virus and now pleurisy. Also, my husband got sciatica 3 weeks ago and hasn't been able to help me the way he normally does. It brought home how vulnerable I am now (at 58yrs) , and how quickly things go downhill for me. Never mind. I thought this morning- shall I give up?- and then wondered what "giving up" would look like. I couldn't picture it!!
I identify with so many comments on here. I too, feel like I mourn my life pre PMR. Hubby and me love gardening, but now I'm more the artistic designer and not the doer!!! 😉😉😉 Its a bitter pill to swallow. We have had people round for meals on one day each week for the last 3 weeks( returning all the invites we have had), plus I did 2 hours pruning in the garden last Thursday. Last 2 days have been spent recouperating! I could hardly bend my fingers. However, today, aches and pains feel slightly less.
Like you all, we were always going or planning something. I'm worried about organising our holiday in case I feel rough, so just put it off. It gives me hope when I hear your stories regarding light at the end of the tunnel!! Sending hugs to all who need them today .😃😃😃😃😃
I know your pain.. ex psychiatric nurse!!!! it's frustration and a kind of bereavement.... try to get satisfaction from what you can do...it will get better in time....do what you can...work out what is really not important...
The garden always looks bleak this time of year....it will grow...with or without you...
So good that you were able to verbalise how you feel, what you're going through, what a sense of grief and loss you feel with folk who "get it"
Certainly for me this happens every so often, especially when I'm limited in something that's important to me:usually for me it's taking fully part( as I see it) in family occasions that I can't do in the same way and I feel, angry, frustrated and really,really upset. I suppose the trick is not to stay there but constantly be thankful for things we can do, how somethings have changed for the good:- not having to organise everything ( nobody asked me to, I just took it upon myself) not to "have" to go to ever thing ( no body expected me to I just expected it of myself!) not to have to step in and sort things for others( nobody.....you've got the gist!) and to take time and do the things that are really important and think outside the box for the other tricky things.
I think you're right post virus we don't feel so good or so resilient and also sometimes it's enough just coping with the main star of the show- PMR or GCA or both without add ons.
Thanks for sharing- it's helpful to know others go through similar things and it will encourage all of us to share. Here's hoping and praying you'll soon feel stronger, physically and emotionally. Xx
A How would you like a big warm hug with the words “It’s ok”. You could ball your eyes out for as long as you want without judgement. Followed by a cuppa or a glass of whatever you fancy. .... as long as I can ask for it back.
I’m 54 diagnosed last year when someone swapped my active sporty body with some stiff old carcass. Life changed within a month to the point where I had to crawl on the floor to get to the toilet. Wondering when I got there how I was going to get myself from the floor to the wc. I still find it hard to believe.
Months later and steroid maintenance I can get around. Had to sell my house as I’ve had to give up my job and back with mum who just does not get this at all and thinks I’m being lazy sleeping so much.
I’m able to get around but forget I can’t run and dance like last year without feeling I’m on a bone rattler or moving while sporting exercise bands permanently on my hands and feet.
I’ve lost my image in a matter of months bloated out like died whale suppurating on a beach. can’t wear stiletto heels any more. Now that makes me feel like sh@t. I liked to dress glam.
Having said all that I am not a feeling sorry for myself person and not prone to self pity or tears.
Then BANG! Last two weeks Crying at everything. Eyes constantly red. Feelings that my relationship is about to end. I know I’m not depressed and I’m a therapist too so used to helping not indulging. This is strange it’s like a coping part of me is watching the Other part cry and fall apart and none of my self talk is having any impact any more. I don’t want to say too much and worry people. My new partners wife died of cancer and I don’t want to worry him with issues of illness. I know this is wrong. He worries that I don’t need anyone and finds me asking for help to do things much more endearing.
So is this anything to do with being under 10mg I wonder?
I don’t know what to say to you as I know it doesn’t matter what folks say to me this feels like a grieving chemical thing that I’m going to be in and out of. I don’t know if that is the same for you. But I totally get what you say. All I can offer is a cyber hug. We should set up a hug service haha.
This too shall pass. But don’t hesitate to cuss it out the next time. We all understand.
It's tough...we're used to caring for others and not asking for our needs to be met!
I suspect (and know for myself) that stems from childhood. Being ill wasn't okay in my house unless you were my mum...any needs were her needs, the needs of others less important.
I learned lots as I went through my training and my own therapeutic journey....but when I feel like this, my learning and understanding take a back seat whilst I play out the old script of not asking for my needs to be met, keeping quiet and soldiering on.
Throughout the 2 weeks of tearfulness I'd been saying to myself, I'll send me some flowers! I really got quite obsessed about being sent and receiving some flowers, flowers brought to the door not picked up in a shop. 2 days ago, I was writing a list of garden jobs that needed Mark's attention and added, Kiss your wife and send her some flowers. We do kissing so that's just normal but he didn't know/realise I was serious about the flowers. Yesterday I made clear that I was serious, declined to be taken to choose some and left him with a bank card and instructions to just do it. This lunchtime I received a lovely hand tied bunch of flowers and despite having been the orchestrater of the affair they made me very happy and cared for. I've explained that the odd spontaneous gesture would make all the difference....I know, his memory is not great, that I will need to remind him now and again but that's okay....they did the trick.
Singr I cannot imagine how hard it is to be diagnosed so young...to have to give up your job (I was already retired for many years) and to sell your house, lose your independence and live back with your mum I am not a glam dresser but still feel the loss of my image despite being morbidly obese before the steroids. At 9mg my eyes are beginning to look normal again, they look open and awake....this makes me happy too.
I have been very lucky, I was never at the crawling on the floor stage, never needed assistance to move in bed and was almost able to dress myself.
I am lucky I have a husband (also retired pyscho) who understands and doesn't NEED me to explain when my tears are almost pre-verbal. I am almost certain that your partner would be horrified if he thought that you weren't getting the care you need....
Do you have former colleagues who would be willing to give you 20/30 mins of their time? It really helps me and I still have to reach this level before I dare to ask for help. I know you know how stroked you feel when someone needs you...so you could imagine how stroked your former colleagues might feel if you ask them.
On that note, I'll get my coat.....
Bonne journee everyone. I have persuaded OH to take me to local garden centre so I can get some compost to prick out some seedlings into and buy some carrot seeds. I suspect I will come back with more than I have planned to buy xx
You sound like such a wise wonderful lady. Funnily enough your response brought me to tears so it's still bubbling under the surface. I was going to suggest indulging in a treat of some kind. Flowers sounds like a good thing to have done..even if you did orchestrate it. It might act as a wee reminder.
Yes my parenting was different in that brother and sister were taking up all of the need. So my big girl pants were pretty big. Ha! The image thing is shallow but I am a professional singer and image is key so that is a tough one. When I see photos of me with the bands I feel matronly and not myself at all. People don't know you are on steroids they just think you are eating all the pies. I should get my big American Swing Band and do a fund raiser for PMR charity you know. One guy congratulated me thinking I was pregnant.....at 54 mate. Stopped myself from punching him. But that dress went to charity.
You are probably right that my new partner would be horrified if I was not getting the care I needed and he would want to give it. I feel he's been through enough but then I've never asked. I'm having to confront my own hyper independence. After all we have no choice but it's a bummer!
Go buy yourself some stuff even if you don't need it.l ol I have just set up a F@ck it fund. I put money in it that I did not expect to get. For example my Tesco credit card was blocked from being used abroad and could have left me stranded if I'd been on my own, So they sent me £50 as a goodwill gesture. Then I got a refund for an item delivered slightly broken and just told me to keep it (working fine), an overcharge for something...yada yada. So money I did not expect to have goes in here. I've even looked through my things and sold some old camping gear etc. So last night I just said F@ck it and booked a trip to Krakow, which I've been meaning to do for years. Felt great. It does not need to be a big expense but I'm going to get rid of old stuff and use the funds to treat myself regardless if I need it or not.
I like the cut of your gib @singr and know I'd spend it before it grew big enough to book a holiday with!
I bought some Geraniums to go with the only 3 of my seeds that germinated, 2 Fushia plants for when I have somewhere to plant them. Coriander which I love and I always fail to keep alive. Oh and 3 Strawberry plants. Bought some Carrot seeds, some Melon seeds and Nasturtiums and Marigolds.
I found an amazing wooden (looks like a coffin on legs) box at a local brocante which cost 15 euros Mark has been wood treating and refurbing (it's probably at least 90 years old).
Yesterday it finally got placed in the garden near the kitchen and was filled with chicken compost, fibre compost, leaf mold and topped just now with decent compost.
I have just planted the strawberries, the coriander, dug up and planted some chive, that my sheep given half a chance come in and eat. Cucumber I've grown from seed.
Have Savoy cabbage seeds growing in upcycled cold frames (made from old boxes also from brocante). Can't buy Savoy cabbage here. Have some Beetroot seeds on the go to.
This is sounding like a gardening forum and I wish I could show you a photo.
Nasturtiums, love them but not the black fly that smother them. Try planting a curry plant in amongst the nasturtiums, it really helps. No good as a culinary herb, but the mild curry smell is quite pleasant in the garden.
Dear lesMum,l think we have all felt just like you on our journey with PMR, it would be nice to see more sunny days although the spring flowers are lovely and a vase of daffodils on my kitchen window sill always cheer me up. It is so frustrating not to be able to do the things we used to do,l also do most of the gardening and just could not bend down or pull up weeds as my arms and legs ached so much. I could not push plugs into sockets or pull them out,and a bath was out of the question.lt does get better though,but it takes time,it is important to pace yourself and not overdo things. I hope it will not be too long before you feel a lot better and the summer is on it,s way and the warmer weather seemed to ease my PMR so l hope it will help you. All the best and sending you big hugs xxxx
Just to let you know that I was weepy after the coughing virus and the weakness and weariness that followed it. I spoke to several friends and my daughter who have had it and they told me that they felt really depressed and weepy afterwards and they don't have PMR!! So I think the virus hasn't helped with out moods. I'm getting better and have stopped feeling so weepy now but its taken a month. Be kind to yourself in the same way as you'd be kind to others.
I felt the same as a psychotherapist, has it occurred to you that what you’re fee is bearevement . Loss of your prievious life, I know I felt robbed of my life as it was. Always feeling ill , looking totally different. Acting different . I refused to accept this disease , and was in a very dark place .I try very hard to keep it together , and have reduced my drugs to 7 . And feel much better . I send you love and hope xx
Thanks Manchesterlady I haven't work since for 12 years (kept woman :D) and the PMR is on 2.5 years.
After all is said and done sometimes we just need a cry. At least I do. If I can feel myself dropping into the dark place i read or watch something sad and have a good blub. Cry my eyes out until I can't anymore. It usually helps me. I come from a family of blubbers who can cry (and laugh) at the drop of a hat.
Belatedly came to this thread. I'm so grateful for your post IdasMum, and all the fantastic replies - all so recognisable, amusing and heartening. You've helped me to work out my own inexplicable tearfulness just now - I believe I'm reacting to the quickening of spirit that spring usually brings. It throws into sharp relief just how little I can actually do. So, a sort of mourning and frustration for what's been lost. Funny how easy it is to miss the obvious explanations. Oh well, at least it suggests my condition isn't worsening, as I'd begun to fear.
On the subject of jar opening, I'd like to recommend a jarkey, if no-one already has. It's a lot safer than using a knife to ease the air lock. I think it's available via Amazon, as well as in cookware shops, and doesn't cost too much.
I have plenty of times like that . . . insert swear words . . . you are not alone . . . try to pace yourself . . . take mini-breaks. Just a 5 minute 'sit' every 20 minutes or so can get you through a whole afternoon of work.
I go through the same thing, a couple days at a time..I can feel it coming on, I get moody for a few days then I really get down for a day or two and then its gone...seems my worst days are thankfully followed by some good ones, or if not "good" much better mood wise..it SUCKS that I went from in great shape and strong to this state of affairs...the busier I am the better I feel, but I have to make myself busy, hard to do somedays....good place to vent..right here on this forum...
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