Hi. I’ve been off here for ages, trying to get on with life, but for me it’s always totally dominated by PMR, and worries re the effect it’s having on the glaucoma and the resulting depression. I’m permanently at the top of irritability and anger. This makes me horrible for others to live with, I don’t even like me!! Any tips pls,is this just a phase and will I move onto acceptance? I was diagnosed and started prednisolone 15mgs in August and have tapered in Dec to 13.5mgs. Any positive suggestions to help me move forward PLEASE x
Cross and irritable: Hi. I’ve been off here for... - PMRGCAuk
I really empathise with what you are saying Wraysbury. PMR and subsequent treatment with Pred has wrought an awful change in my personality, and not for the better. I sincerely hope that it is temporary and that I am learning about self control and separating true, justifiable anger from the effects of chronic pain, disability, fatigue and steroids.
Did you write your post after blowing up at someone or simmering with hate for no real reason?
I only ask because when I look rationally at my interaction with the world, I see that I have steady periods where I am fine, possibly more insightful with odd bursts of creativity. I know I need to rest a lot and that I have a very low tolerance for stress. I also know that nobody really understands ( except folk on here) and most people only care about how your illness impacts on them.
My advice is to be kind to yourself and admire yourself for getting through this, the best you can. Rest a lot, eat well, do relaxing things that you enjoy. Avoid stressful situations, if you can and give vexatious people a wide berth. You’ll get through and the people who really matter will still be there.
Have you no-one who is close to you who may just try to understand - they know what you are really like when healthy, we don’t.
Many suffer from depression on here (luckily I’m not one of them)! They will no doubt post later on.
It’s easy for me to say “things do get better” and “there are so many worse off” but you won’t see that at the moment.
I wish you luck and hope you accept that things will get better.🍀🍀
To continue from SJ's post, I doubt you will "move into acceptance" - you will have to take some initiative. One place to start would be your GP and discuss the problems you are having. He may be able to help with a pill for the depression (mood changes with pred are no different from any other sort) or tell you how to access some counselling - bereavement counselling applies here too.
Another would be to hang around here more rather than less - there is a role for support from all of us. It sometimes makes you realise that actually, what you are dealing with is little different from what everyone else has or even that you are in a pretty good place relatively speaking. Keeping a gratefulness diary helps some people - and someone posted recently somewhere about making a note about something good every day and putting them in a jar for perusal later. Works twice, both at the time and when re-reading.
The glaucoma should be being monitored - if you are that worried, get pressure checks more often, even if you have to pay to get the reassurance.
You are still in the early days - it will get better and you have to hold onto the fact that even if you feel and are ratty you are more mobile and reducing the risk of developing GCA and the threat that is to your sight.
Hello. It sounds grim and sadly not uncommon. There may be biological effects but also the effects of having one’s life changed so drastically. I’m a great fan of talking through it all and outsourcing the emotional fallout. The day after I was diagnosed, even when I thought it was a 6 month job (aw bless), I sorted out counselling. Thank goodness because working through my loss of job, indentity, way of life, energy, side effects blah blah has been quite a process. I recommend it if you can get it, it’s not easy but life feels crap anyway so what’s to lose?
Jane is so right when she said try and avoid stressful situations ,l find them very hard to deal with and can become very agitated and upset .l had a very embarrassing meltdown a few weeks ago with a funeral director about a memorial that seemed to be placed too close to my husbands grave ,plus it had so much placed around it including a very large empty flower pot next to it.lt looked so untidy,and having just increased my preds because of a flare ,l just lost it when he asked if l knew who ,s grave it was,apparently it was the mayors wife !l was so upset that he seemed to imply that she was more important than my husband.l ranted at him about them only being local people who happened to be on the council and it did not go down at all well !Oh well l have had some rather cold looks from people in a certain shop here who were normally very friendly,on my way out in came the mayor,so obviously a friend of theirs ! I hope you forgive me for posting all this but unfortunately our actions when getting very stressed and angry can sometimes go further than we ever wanted them too ,and yet it is something you find so hard to control with our PMR and pred .l am not upset about all this ,if they do not understand there is nothing l can do ,at least it is looking much more tidy in the cemetery now so l think l had good reason to complain. I do enjoy creative hobbies and achieving something ,however small,definitely improves my mood,and during the summer gardening is so therapeutic .l hope that as you gradually reduce your dose of pred you will begin to feel better,l have been on pred two and one half years now.Take care and I hope the new year will be a happy one for you .
It’s also early days Wraysbury and sometimes just reducing can seriously affect our mood. Just remind yourself that this isn’t really you; it’s a effect of the medication and the condition. Tell folk you love that these situations may happen and apologise beforehand. Be kind to yourself if they do happen and know that every day is a new day and that you can start again. Hang around here and know that others go through equally difficult times but they come through in the end and things will get better, even though there will be the highs and the lows. Xx
Early days of PMR/GCA are often filled with a variety of feelings....shock, fear, anger, frustration. Pair this with new medication, side effects, aches and pains and it can set the stage for conflict and outbursts. Sometimes guilty feeling follow.
It was scary in the beginning for me to have feelings of such intensity, especially the anger. Saw my therapist who helped me work through it. Also I agreed with my husband that there would be times I needed to take some space (and so would he if need be) as to avoid escalation of conflict when I was not feeling myself. This helped, as did accepting my diagnosis. Finding this forum was a true blessing as well.
I’ve been in pred 8 months now...down to 9.5 from 20, and for me, my mood swings and depressive thoughts were lessened as I reduced. I still try to avoid stress, and have adopted a healthier diet/exercise regime which helps.
Be kind to yourself and seek professional support to aid with managing all the changes. Try not to feel guilty or blame yourself for these changes. Adjustments will need to be made to adapt to your new circumstances. We are here for you, post anytime!
Thanks so much. My wonderful 96 yr old dad lives with me, I gave up work a few yrs ago to look after mum who died 2 yrs ago. I just don’t know how to explain to him why I’m like I am. We were all so happy and he can now barely breathe without me feeling irritated. (Exaggeration) but I’m sure u know what I mean. It upsets me so much as he’s lovely. And I’m certainly not anymore
Do you think that your Dad knows you're feeling irritated, or is it your 'guilty' conscience because you feel irritated inside? If he's aware of the change in you, I'm sure in his 96 years of wisdom, he would understand if you sat down with him and explained that the PMR and its treatment are affecting you and how worried you are about feeling so down and 'grumpy' with yourself and everyone around. He will have experienced SO much in his life and he loves you unconditionally, so maybe a 'heart to heart' will help you both.
As the others have said, this may all lessen as your dose reduces.
A year or more ago, my husband told me I was "nasty and cantankerous" I was devastated, but it made me stop and think before I voiced an opinion on things!
Letting him know that you are struggling with your moods due to the medication and circumstances will help provide him with context in case you do find yourself snapping or feeling down. Sounds like he’s a wonderful, likely understanding fellow, and being informed will reduce confusion or him blaming himself if notes changes in your mood or frustration levels.
It is very challenging when you feel you have no control over your emotions, even though you desperately (and rationally) want to return to your usual mindset. I’ve found myself very emotional and crying at the drop of a hat. Even hearing certain songs can trigger the tears. Sometimes, though, I am overwhelmed by intense joy and depth of good feelings too (like when I told my son about my impending knee surgery and he was encouraging and supportive and reminded me that by the time that goes down he will be living in our town, and that he will be able to help take care of me). Bring in the waterworks!
I do hope you can explain things to your dad and that your moods will level out more as you reduce your dose.
You are not alone with any of these feelings. I know I wrote on here some time ago that my husband asked "where is my wife gone" - not in an unkind way but I think just baffled at the change in me. I was - and I hope still am in there somewhere - the most compassionate, caring person - now EVERYTHING irritates me - I don't have the patience for things I once had and find it hard not to open my mouth and say it!!!! Soooo not me!!! I think maybe a little bit of that would have been helpful over the years - maybe I wouldn't have ended up in this situation!! I definitely think I got it from stress. I'm angry a lot of the time and anxious and a whole dose of other feelings that aren't particularly pleasant!! Don't beat yourself up but just know its not you!! Maybe even that will help to control things when you feel it getting out of hand. A lot of the anger too is the loss of you life as you knew it - not knowing what way you are going to be each day. For me anyway. I wish you the very best and please stay here for some support!!
Thanks so much for all these supportive messages. It’s really helped me and after a tearful and sleepless night I feel positive today and more in control. I should have logged back on ages ago. I’ve looked through archives too re mood etc and it is so helpful. Today I rang my Ophthalmologist and an appt is in the post. I booked an opticians appt and did the ironing. Yday I cooked 2 extra meals for the freezer and when my father didn’t look keen, instead of flipping my lid I divided them into 4 and I will just give him his favourite of pork chop when I have the casserole! Sounds so simple, but with my muddled brain I so often cannot see the reasonable route to take. Oh and I’ve also reg with SOZO for some prayer ministry! I feel slightly more like my old self or perhaps the new person I am becoming. Thanks again
Dear Wraysbury, in the course of my life there have been several moments when something changed in my brain, suddenly, as though a page in a book was turned. It isn't something which can be controlled, but the change in outlook was in every case permanent. The one I've shared on here before deals with depression, which I had in mid life. I remember feeling like there was a terrible black chasm behind me which I was in danger of falling into. One day for some reason I decided I would draw a picture of this. So with pen and black ink I drew a seated woman then started to fill in the space behind her. I stopped drawing when I saw I had created a strong, immense tree trunk. All at once the chasm was transmogrified into a great, supportive tree. I date my recovery from what was really very serious depression to that moment. The depression PMR and post-retirement social isolation brought on was nothing like what I'd experienced about twenty years earlier because the tree is there. May you, too, be granted inner strength and support.
I felt rather like you this time last year when I couldn't see any improvement on the horizon, not helped by the fact that I'd just had a nasty flare up of symptoms. A year later I feel markedly better, not exactly 'well', as I'm still overwhelmingly fatigued most of the time and succumb to every cold going. However I've lost the sense of having a permanent dose of flu, what the doctors elegantly call 'malaise', and I have a sense that I will eventually get better. I find it helps to keep aspirations fairly simple and humble. I cleared out some kitchen cupboards yesterday and only had to rest for a couple of hours afterwards, which is definitely a step in the right direction.
Do you have a creative pastime that gives you pleasure? I am definitely not artistic, but I've always got a lot of satisfaction from domestic pursuits like baking and knitting. I've had to give up the baking as unfortunately I like eating the results too much, and I need to cut out sugar. However I've never stopped knitting, if not for myself or family members, for charity. I try to have one simple boring project on hand for when I'm very tired, plus another trickier one for when I'm feeling more alert. I've just finished a new pile of 4 hats, an adult sweater, 2 baby cardigans and a large adult-sized blanket which I'll take to Knit for Peace later this week. Last time I took them some items, I was ridiculously pleased when one of them was chosen for 'knit of the week'. I'm also thinking I'll get back to doing some dressmaking which I've neglected since I first became ill nearly 2 years ago. It wasn't the stitching itself that I couldn't face but the initial slog of preparing the fabric and cutting it out. And I've made a New Year's resolution to learn to crochet properly at the age of 67. I've got a stash of cotton and linen yarn, which I wouldn't want to make into garments but, since we're all being encouraged to avoid disposable shopping bags, will make very acceptable crocheted bags for presents.
Oh don't worry, I've had my failures. I don't want to think about one particular jumper for my second husband which had sleeves virtually down to his knees... Taught me that the boring bits that we are tempted to ignore, especially getting your tension correct and fitting as you go along, are genuinely important.
I too had periods of depression, ill temper, anger and was not fun to live with. But it seems it is all part of the PMR package. If I was angry I kind of thought perhaps that was nature's way of letting off the stress of the situation, better than bottling it up. I decided this was normal given the circumstances and just went with the flow. There are a lot of ups and downs physically and mentally but eventually it all diminishes. I found that PMR threw a lot of unanticipated aches, pains and angst my way. I fixate on my PMR being super sensitive to whatever is going on in my body at any given time so I kept a diary of the experiences. Looking back on that I see that things have settled down and some things just disappear. I have glaucoma but I had that anyway before PMR and it is being treated, now I have prednisone induced cataracts … another added extra! Take heart.
I really sympathise with you Wraysbury! I also struggled (and still struggle) with mood issues. If I wasn't crying I was angry. My lovely mum usually bore the brunt of it! Being an ex-nurse she understood the effects of PMR and Pred. I stormed out of the house once, announcing I'd see her "tomorrow". Bless her, she only had a few more weeks to live and she was in her chair having got downstairs in her stairlift. She couldn't even get to the loo unaided, but I swooped out in a strop... I returned three hours later and she was still sitting in her chair and she just looked up at me and smiled, joking that she thought I was coming back "tomorrow". She knew I'd be home. Another time I didn't speak to her all day. Of course she'd done nothing wrong. I was just worried about a one-off private rheumy appointment which she'd paid for and I'd made myself. We can never have our loved ones back, but my mum understood, and your lovely dad will too. He's known you a long time and he knows you're a wonderful daughter. Be kind to yourself.
I think it is a phase. I was euphoric when on 20 down to about 15. Then I could blow up for very little reason. My daughter referred to it as my Roid Rage! When down below 10, the mood was much better and now down at 5, I’m actually feeling a bit down at times. It messes with your head but keep telling yourself and those around you that it’s the meds talking. You and they need to forgive you...it’ll pass. X