I haven’t been on prednisone for years and I’ve had a brain haemorrhage in between so can’t remember how I felt but I’m on 20 mg at the moment and I’m feeling so emotional and sometimes angry at my husband as he isn’t the best person with my current illness, he wants attention, he wants the illness in fact the way I feel right now, he can damn right have it! But , truly, I wouldn’t wish it on anyone. I’ve gone through a lot, and I know I have and still am, my I have to nag at my husband to do the simplest of chores and it’s so frustrating. I used to have our home immaculate . I dragged the laundry out yesterday it was full and did the lot , ironed sorted , cleaned all the pots and tops because I’d had enough and now I’m crying with pain.
Is it me or the medication?
Thanks for listening
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Numptybrain
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I think pred has a part to play with emotional lability. It certainly has for me and I can identify with getting angry. It’s more low level irritability for me now I’m on lower doses and suffering the deathly fatigue as people on here call it. I’ve never been that bothered about the immaculate home but have had a cleaner who comes weekly which is a help for my stress levels. Is that a possibility for you? It must be frustrating if you’ve always packed a lot in to keep your home tip top. You could think of yourself (instead of the house) as requiring a focus on well being instead - rest up, read a book, listen to music, whatever takes your fancy. The hardest thing when this goes on (GCA) and into different phases is that it’s boring, people, including husbands, think ‘surely it’s over soon’. I so wish….Good luck and look after yourself. X
Bless you, I’m awaiting possible lupus sle PMR etc lots of involvement but plenty of inflammation. It’s just very frustrating and I haven’t been on steroids since brittle asthma from 18 to 40 I’m 62 this year so I’ve forgotten about the horrible side effects.
Probably a bit of both - it's certainly a common side effect of the Pred... but should hopefully improve as you reduce the dose.
Plus it has turned your life upside down - you cannot do all the things you did before [hence hangover from yesterday's activities] - so resent that -and having a less than understanding OH doesnt help.
But you have to put yourself first... can you get a cleaner in once a week or so - even if it's just on a temporary basis.. Many of us have become good friends with our dust 😊!
There are more important things in life..
.. and f you still feel emotional, please discuss with you doctor, there is help out there, and it's not always medication. Just an hour to yourself, to do what you enjoy sometimes works wonders.
Thank you just someone like you who understands makes me feel sane again and puts things in prospective. I feel worn out, I struggle with my breathing due to fluid around lungs and heart and it’s just getting too much especially with everything else. Maybe I just need a good cry and an understanding ear
We can supply an understanding ear… and personally I was given broad shoulders for a reason.. 😏
… in my late teens [ way before PC was a “thing] one of my late husband’s [then boyfriend] ]mates said to him - “blimey, you don’t want to get on the wrong side of your missus, she’s got shoulders like Cassius Clay].
As you’re not in my age range, you’ll probably don’t know who I mean, so Muhammad Ali]… 😊
Yes I know Ali and I was a single parent for many years so I knew how to handle people but now I feel a crumbling mess but usually I’m so strong and have dealt with everything that’s been thrown at me so far. I’m still waiting a diagnosis after 14 months, it’s long drawn especially with fluid around heart and lungs but hey ho hopefully soon the rheumatologist might decide what this is.
It is the medication and the fact that you are ill and cannot do what you used to do and nobody does it to your standard. I am sure that the situation you describe is common amongst our community. I certainly recognise it from my own household. There is a certain desire to be regarded as being rather heroic for doing the jobs I have done unremarked upon for years. The fact that my OH does everything comes up in every argument.
We need to let go of our old standards and drop jobs that don’t really need doing, like ironing except special occasions, never a load, just the odd item. I prioritise tidiness and hygiene. My OH cooks and shops. Consider having a cleaner, or one deep clean that helps to make it easier for a while. I have one of those little round, robot vacuum cleaners that is ridiculously pleasing, trundling off to places like under furniture and beds as well as the visible places.
When a person is ill in a household, I think others can feel neglected. The odd appreciative remark and kind words go a long way. I apologise a lot. Pred gives us a short fuse.
It hurts our self esteem not to be able to do the lion’s share like we used to. For our generation, I think women feel it acutely. Young women - not so much. Thankfully.
Don’t respond to this situation by blitzing everything and then collapsing. You will just bring on a flare - is it worth it - just to be the martyr and induce guilt in a loved one?. These diseases require a big adjustment for everyone, we can’t demand “ first dibs” on all the sympathy, and help unfortunately.
I have not got this right, I don’t think I ever will, life is just not fair. Be kind to yourself and do not even try to do what you used to do. It will help your recovery in the end. Come on here to rant. We are in this with you.
You have definitely hit the nail on the head, I’m 62 in September and battled lots of deteriorating health, one on top of another to a grinding halt and it’s just took its toll.
I think you have to accept that men are a different breed!
Don’t do too much, yes illness does take its toll but you have to pace yourself. I only do a bit of ironing nowadays but do one item and sit down for a rest, and then another item and rest.
Try and do something you enjoy on your own if necessary. But you really must slow down.
As the others have said if it helps then please come on here and rant. Have a good scream now and again, I do.
All best wishes to you and I hope your health gets sorted soon and you feel better
My daughters have had strict words and told me not to overdo things. I have a telephone appointment with GP on Monday to see if they can help with my stress
Mostly the medication - "Roid rage" my granddaughter calls it, She was on loads of pred for brittle asthma as a teenager so knows all about it. The asthma has resolved to "normal" after going vegan.
But you do have a complex problem that isn't being addressed and that is pretty scary too. And add to that a seriously unhelpful partner and you have a real ****storm. Start by identifying what MUST be ironed (suprisingly little if you are honest!) and leave the rest. Fold if you must - anything that can go on a hanger goes on a hanger here!
I assume he is like mine was - can't even sort his clothes into coloured/"whites" at source? Just to save you that ...
Be assured I would probably have thrown the pots at him. Before cleaning them!
Yes he hasn’t a clue, I nursed him through epilepsy and a pacemaker although I held down a full time jub as well as my own mobility needs, I think it’s part to blame for my I’ll health now and he is fighting fit can do everything he couldn’t/ wouldn’t do. He just went into pity me mode instead of trying to help himself and daft me picked up the pieces but he hasn’t been there throughout a brain hemoraghe spinal operations etc . It’s been me having to sort things with consultants even though cognitively I struggle with words whilst he just sits there. Even when I’m in hospital and I need my pain medication I’ll ask him to get the nurse as they don’t always respond to buzzer, he tells me to get in my scooter and go! It’s that bad.
Not much of a "partner" is he? Mine was the same - a year of me doing it all, including teenage daughters and his mother deciding to turn her nose to wall as she didn't want to outlive her son, while he had chemo, surgery and radiotherapy. But when I went through 2 very dodgy late pregnancies with the prospect of losing the baby and me dying in the first, broke my leg many years later, developed PMR that wasn't diagnosed for 5 years - it was still me that ran the household and he didn't even offer to hold my hand. And when a consultant he worked with accused me of being abusive for asking why she expected ME to have the results of an EEG he sat there in the corner and didn't say a word! The realisation by my daughter that he was somewhere on the now newly identified ASB/ADD spectrum explained a lot - no grasp of empathy, single mindedness to the exclusion of family when he was working - but it didn't/hasn't healed the accumulated hurt.
Don't think he was as bad as yours though - he would probably have gone to look for a nurse!!!!
I just don’t get how horrible he can be and lack of empathy. He then crawls round me and tries to make up by doing some housework thinking all will be well but no chance, the damage is done.
I feel for you - what a tough time you’re having. It’s good to rant here as this forum is so compassionate and understanding. A cleaner every fortnight would help you, and when I was quite poorly last Autumn I found an excellent counsellor who really helped a great deal for about 3 months to overcome the ‘blues’ and mild depression I had with these illnesses. I do so wish you well and your recovery too. xxx
PS … it sounds like HE needs the counsellor not you.
Thank you so much, maybe speaking to someone might help. My son has just came back into our lives after 21years , we last seen him when he was 17 he’s now a dad of 2 a girl and a little boy and wants to reconnect and make up for all the years he has lost and regrets missing his mum and sisters, who are also 40 and 33 now. It’s heartbreaking but I’m overjoyed just to see him again and I’ve already met my beautiful grandchildren and daughter in law.
Oh my Wendy …. What a story .. and how wonderful for you - and very overwhelming too. I think that finding a counsellor … a trusted one recommended by your GP who is BACP qualified would help you as with your health and this new found joy will be overwhelming for you. You must look after yourself properly now - your health is a priority and you need to be nurtured and cherished. With love xx
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