I've often read on this forum moving accounts of people who have experienced setbacks in their illness because of bereavement or illnesses in loved ones or other major troubles. I feel I've had at least a slight flare up of GCA symptoms recently and that two nagging, but ultimately not greatly important problems, are at the root of it.
I won't go into great detail or this will be a 3-volume novel. Suffice it to say that the first problem has been an on-going dispute with my landlords about whether they or I should be responsible for dealing with the squirrels that have invaded my loft space several times in the 10 years I've lived here. The second is another on-going dispute, this time with my utility supplier about why they had my gas meter replaced last year, but failed to record that in my account, resulting in my readings being rejected and my direct debit being summarily doubled. I've won the first dispute for the time being - until the long-tailed little blighters find another way in and then it'll start again... I've just had a long online chat with a nice Customer Service lady which gives me hope that my second will be dealt with next week, but I now need an hour lying on my bed to recuperate.
Until I became ill, this kind of thing was annoying but it didn't leave me feeling thoroughly drained and exhausted, and of course I didn't have any ailments that could be made worse. Do others find things like this far more overwhelming to deal with than before? Off for my lie down...
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Marijo1951
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I answer to your final question, yes. I find it more difficult to cope with situations that need repeated calls and letters than pre-PMR. Of course, the current situation doesn't help. I wouldn't say the problems you write about are niggles and if you are being passed from department to department or person to person to that can add furthers layers of frustration and irritation. That, in turn, can may well excacerbate your symptoms to some extent but whether it will cause a flare I can't say.Good luck with sorting out the problems. A lie down is most definitely a good idea.
Thank you. No I suppose ''niggles'' does understate things in a way, as both involve paying money I can't afford through no fault of my own, but I just meant they're minor compared with accounts of bereavements etc that I've read on the forum.
Either of those could be enough as they are on-going irritations that never go away.
My daughter had the same nonsense with squirrels - at least it wasn't rats, not that I consider there is a lot of difference with grey ones. Red ones are prettier and fine in their place - and that isn't in my loft! She didn't bother with the condominium people who should have done that sort of thing, we pay enough - got a pest man in who set live traps, removed one and then the partner turned up. The second run worked well - and it was sorted. Theoretically it was my place to pay as her landlady so it wouldn't have been an issue but she found the stress of the creatures being there horrendous.
The electricity thing is an absolute menace - been there, done that though not over these blasted magic meters that tell lies ... It was switching from the most incompetent company to one rather less awful but the first company insisted we owed them money - from the previous owners, not us. I use the local town company here in Italy - don't care they aren't the cheapest, they are competent and there is a real person behind a desk if necessary! Wifi comes from the bank, also not the cheapest but good, efficient admin and a REAL person! Italy may have a reputation for being a bit crackers but our region isn't, plenty of Germanic discipline mixed with the laid-back attitudes.
But I can remember in the early days even a single phone call would leave me in tears and shaking - and I really am not that type. Now I find learning to do something new can be so stressful. I am a learning by doing person - I have to see it done, not described in stupid line drawings, text is a bit better but that takes ages to work out, and then do it 2 or 3 times and it is fine provided I do it at intervals to refresh. But that first time?? Awful!
It isn't that the meter tells lies, just that they didn't record the change on my record, so wouldn't accept my readings. Regarding the squirrels, I ended up paying £360 to have them dealt with because I didn't want them gnawing through the wiring, putting the lights out as happened once before. I've had that refunded, but they say it won't happen again.
I had the squirrel problem when we moved back to the Uk to a house which had been empty for quite a while; the squirrels had completely colonised the loft and seemed to run about all night above the bedrooms. I found it quite frightening at first as my husband was still in Germany and my daughters were boarding until everything was sorted out so I was alone in the house. It took nearly a year to get rid of them and it was explained to me that it would take at least two breeding seasons before they got the message that they were no longer welcome (apparently they breed in spring and autumn). In the meantime I had to go up into the loft every day and check for corpses; I really had to psych myself up for that. Still, I wish I could do the climb up to the loft now as I can barely manage a few steps today.
That sounds appalling, even worse than my situation. I've been invaded a total of four times in ten years, but they've never had the chance to actually colonise my loft. It annoys me that the little devils are so cute to watch in the summer (I have a second-floor flat and my windows are level with the treetops) but so, well, verminous when they invade our spaces. Apart from being kept awake all night as if Riverdance were performing or Liverpool playing Arsenal above my head, they put my lights out once and might have done worse damage.
PMRpro this thread has now officially confirmed that what I told you all those years ago finally has been proved I was right. I am odd.
I got out of my pram because 21 years after My Mam had both, I discovered little or no progress and mainly women affected ..................boy was I angry................luckily so were 4 others.
I have a very demanding job which I have coped with throughout the 16 months of PMR/GCA (steroid controlled thank goodness) but try and deal with the bank, the internet supplier, gas supplier, etc and I am literally a quivering wreck...takes many hours to recover.
The way they try to refer you all the time to the FAQs doesn't help, as if they cover every possible problem including the many caused by their own incompetence.
I think when you’re ill, particularly with a long term issue like we have, everything becomes much more difficult to cope with.
You don’t want the never-ending hassle of minor issues that seem to take forever to sort out....you don’t have the strength (mental nor physical) or the patience!
You're so right. I wouldn't say I had a major flare up but did start to feel the typical pain in the right temporal region. I've gone back to 6.5 mg of pred from 6 mg and that 0.5 seems to have done the trick.
Yes definitely to your last question. I find that things I used to take in my stride now floor me. A few weeks ago a guy crashed into my car essentially taking off one side of it. I wasn’t in it. No one was injured. He left a note and admitted liability. So far so good. But the constant hassle of dealing with his insurers, getting a replacement car during Covid and my car being away for over 4 weeks getting fixed really took it out of me. At the same time things got a bit stressful at work, nothing major at all. Boom! A flare. It appears that quite a few of us have had flares recently and I do wonder whether the general anxiety about Covid and (for some) a certain political situation that we’ve been experiencing might be rumbling on constantly at a certain level which means that it takes less extra stress than usual to set off a flare again? Just my personal theory. But like you I feel that pre PMR these things would have felt really pretty minor and I’m sure I’d have been able to carry on juggling them with all sorts of other things with no particular difficulty. Now they feel overwhelming.
I'm in awe of those on the forum who hold down a job. I've said numerous times before that I'm glad that I was struck down after I'd already retired. I hope you get the car matter sorted out very soon. If the ''certain political situation'' is a two-syllable word starting with ''b'', I'm pretty sure it was that that made me ill in the first place. There certainly is a general air of anxiety in the land, though how I can be sure when I so rarely meet anybody, I don't know!
'Tis the zeitgeist! We are all sensitive to the spirit of the times. Don't really even need media to explain it to us. Yesterday i came across something, an event being advertised, I think in the newspaper, might have been FB, which had an April date and my first thought was, that's out of date! Then I realized of course it's April 2021. Unsettling. Made me even more aware of how in many ways we've "lost" a year.
My son gave me a theatre ticket last March, either for my birthday or Mothers' Day, I forget which. The performance was for 24th March, which was of course cancelled. Twice since they've rearranged dates, but had to cancel again because of the second, then third lockdown. It's all in limbo and I wonder if the play will ever be put on at all. It's so hard for everybody connected with the arts and entertainment.
Ticket agents for our local theatre company which we always subscribe to phoned in the late spring to say the rest of the season had been cancelled and did we want a refund or to leave the money as a donation to the company. Of course I said, a donation. But I should have asked for a tax receipt....
They gave me the option of wait till the play is actually performed, keep the payment as credit for another play or have a refund. If the worse comes to the worst and there's an option to donate, I'll do so.
It was last week, my 70th so supposed to be a milestone. I enjoyed it despite the restrictions. The highlight was a very long Zoom call with my four children and their partners and the four grandchildren. There were surreal moments, like when my granddaughter in Birmingham brought in a lovely cake that she'd baked and I watched them cut and eat it! They asked me to blow out the candles through the screen, but I reminded them that that particular custom has died out as a result of covid...
This is so sweet. A very happy belated birthday wish to you. Count your blessings on having such a big and wonderful family especially right now. I envy you. Thank you for sharing this experience.
As well as the month it's which day of the week for me. I read something recently about, 'thisday, thatday, theotherday, oneday, someday......' That works for me!
Yes I keep finding myself talking about stuff which happened ‘last year' when in fact they happened in 2019. It’s almost as if 2020 didn’t happen. It’s quite unsettling.
Thanks, that's fascinating. Time changed in quality for me before the pandemic because of the insomnia (at first every night, later more intermittent) caused by pred, which meant that I was often awake at night and asleep in the afternoon. However the covid restrictions have definitely increased the distortion. I have the sense that time has both slowed down and sped up at the same time. If I don't check every morning on my phone or computer, I soon forget which day it is.
Yes that’s it exactly. No memorable moments to hang things on. I spent the first three months working from home then went back to the workplace so my awareness of which day of the week it was etc improved significantly then but there were still no real memorable events like theatre visits or holidays.
I'm fairly sure it has been the cause of my consistent flare for the last 4 years - I didn't know for some time what would happen about my healthcare. All the basis for our life here was just pulled from under our feet. OH was fine, he was old enough and had paid enough years to be eligible for his pension here and in Germany before it went pear-shaped. Just as my situation was sorted OH got ill and then came Covid ... Have barely been out of our village for a year now.
Well, things aren't looking great so far but, because of covid and the Royal Family soap opera, it isn't in the news as much as it should be. I live in London rather than a village, but I haven't been further than Aldi or my daughter's (all of half a mile) for ages.
Sounds like quite enough to me! Stress can be just as bad when it is unrelenting especially with no end in sight. While many would say it takes a lot of rattle me, I certainly feel that since diagnosis I can’t deal with as much as I could. I avoid taking things on if possible. When you say flare, do you mean pain coming back or total exhaustion? The exhaustion is quite par for the course without your hassles and in my experience this was at its worst below 10mg. Even now on no Pred and allegedly good adrenal function, I still just flake out when my body decides it’s had enough which is highly variable. I’m 58 and take more rests than my sickly 84 year old father-in-law.
The fatigue never goes away, but I've raised ''pacing'' to a fine art. For example, I'm converting an old duvet cover into two sheets. In the olden days I would have done it all in an hour or two. This morning, I cut the two sides apart and pressed down and pinned all the hems. Then had a good rest before tackling the utility company as described above which exhausted me again. Tomorrow morning I'll do the actual sewing before another rest.
This minor flare was a telltale headache in the temporal region that was most affected before but, as I mentioned to Dorset Lady, increasing my pred dose by 0.5 mg seems to have dealt with it .
Oh that's good. I'm back on track with finishing a needlepoint project (derailed because I ran out of a colour, have to order English yarn from a little shop in Victoria British Columbia, and they sent wrong type.... ) long story short I lost momentum and stopped for about six months. So I sit down and do a few stitches and say, as soon as the going gets tough, that's enough for today. Oddly enough I can actually see progress, and in a while I expect I'll pick up steam again. This picture (not the kit, though) :
My goodness, that's gorgeous. I'd be very proud if I could make something so beautiful, but needlepoint is something I've never done. My knitting mojo has been consistently reliable, but I lost my sewing mojo last summer after I made a huge pile of face masks. It seems to have returned though, so I might at last make inroads into my huge stash of fabric.
Don't congratulate me too much. The project started when I was going to make six of these, two hares, two foxes and two ravens. This is the sixth. They were going to be seat covers on a dining room set. I no longer own the dining set, having left it with my son when we sold the house to him. I began this project, according to the note I made on the frame, in 1993! Working steadily I was able to finish a picture in one to two years, but there have been many years when I didn't work on them at all. Now considering having the pictures framed and giving each of my three children one, and they can each inherit a second one when I shuffle off this mortal coil.
I've always been unable to knit. Whenever I've tried, from childhood on, I get that feeling you get when you are trying to untie a knot that won't untie. I admire knitters! My daughter is a terrific knitter.
You have inspired me to pick up my knitting again (for charity). How will I face the other ladies in my Knit and Natter group when things go back to 'normal' and I have produced nothing? How I miss them all!We laugh most of the time and I come away feeling on top of the world.
I was actually inspired by Marijo1951 to start knitting again during first lockdown after a gap of about 30+ years. I confess that I got about half way in my shawl project then it got a bit complicated so it’s been lying about for a few months now. I must pick it up again soon...
On reflection I think you must have inspired me before lockdown (I remember you were knitting things for a charity and delivering them personally which wouldn’t have been allowed by then) but being a terrible procrastinator I only got round to starting again during first lockdown when I had more time on my hands. I’m pretty sure it was you though. It’s amazing what you get from this forum. Not just medical advice. Inspiration too! 😀
Ah yes. I live a bus ride away from Knit for Peace which saves a lot in postage and I don't even have to pay my bus fare. Actually it is possible to take things and leave them on the bench in their courtyard and wave frantically through the window to let them know. They leave them for a few hours and then take them inside - okay unless it's pouring with rain. I'm doing selfish knitting at present, a jumper for me.
I think that these are precisely the kind of stressors that make us ill. Particularly during the times we are living through. Anything that makes you feel that you have no control over events and are being unfairly treated is hugely stressful. They just chip away at you and loom too large in your life. I hope that it is all resolved soon for your health and sanity. In answer to your final question YES!
I know exactly what you mean! Its weird, like your body and mind just can't cope with anything out of the ordinary, more so worrying issues like you have here are do much more difficult. So not just real big things!! Take care, i hope you get sorted.
Thank you so much for that post. This forum and daily updates such a comfort. Trying not to whinge but........ now in year 5 PMR, like so many of you, told it would last max 2 years! Am 72, primary carer for 98 year old mother who lives with me and 42 year old autistic son also living with me. Am trying to sell property to separate living arrangements when neighbour puts in ginormous planning application. Sale now in jeopardy. Partner of 20 years and somewhat alcohol dependent has taken to saying 'not my circus, not my monkeys'. Good news is down to 4 mgs but still have some aches which don't go away even if raise pred dose - age? Find I have gone into 'autopilot' mode with a degree of fatalism taking over. This was not like me. Giving up is really not an option but am really struggling. So love you all for being there.xxx
It's difficult enough for us to care for ourselves, so much harder with dependents, so you have my admiration and best wishes that everything turns out for the best. You deserve to whinge from time to time so don't feel bad about that. I had a husband who liked alcohol a bit too much - it doesn't help a stressful situation. I get lonely quite often especially in these covid times, but there are definitely advantages to being single and without dependents.
Thank you so much for encouraging comments. I can feel lonely with all the circus going on around me. Covid makes introspection so much worse, oh to sit with my friends and moan over a glass of wine! We have often thought that writing a 3 volume book might help - a mega off load. Hope we all feel better when Covid is under control.
You've got a lot to cope with, and this is the place to let out some frustration. I don't like my increasing tendecy to shrug, procrastinate or say 'I can't be bothered'; as you say it isn't the me I used to be. I'm in PMR year 6 (it becomes a bit meaningless), you're doing well on around the 4mg mark, am still between 8.5-10mg.
The endless drag of a wet cold windy winter is bound to have sapped our limited energy and tolerance levels - poor old body feels as though it's aged a lot more than the months of lockdown 3. Let's take a little time for our own TLC, mine's a cup of hot chocolate whilst looking at the birds on the feeders and having an empty brain for a few moments. Good luck with everything, Poshdog, you've come this far so on we go.🌹
Goodness, how much better I now feel! Go away stiff upper lip, there is a time and place for you and it doesn't seem to be now! A good whinge was what I needed, thank you for encouragement and for listening. Xx
Feel for you Poshdog I take my hat off to you with how much you have to cope with looking after your family on your own by the sounds of it. That must be really hard. So sending you a socially distanced hug if that's ok 😊
You've certainly got me going here .. oh, the looming joy of 'shopping around', typing endless details into comparison sites, followed by 'haggling' for the annual round of insurance, utilities etc.etc.... hours of increasing stress levels and both me and sometimes the screen going round in circles...grrrrrrrrr😱😡 👀 Even thinking about it and my BP has soared.
I never had any problems with my company (might as well say it - Eon) until their stupid error. I'm thinking of possibly changing once everything is sorted out but, as you say, it is all such a hassle. I'll probably end up not bothering.
Yep, not bothering is what they all count on! But sometimes I get so irked I just have to pick up the phone, although I'm never rude to customer services. Just try to be a charming, rather doddery Little Old Lady who needs their expert help (what an exercise in duplicity that is!)
I was not going to admit this, we bought new sofas a few weeks back and had problems from day one, to cut a long story short i had to ring up the company, to get them taken back. they should have arrived to get them on a certain day, needless to say they didnt ! When i rang i burst into tears , i got it sorted, but felt ill for days after ! Ive been used to dealing with the public all my working life, but dread things like this atm ! Thank goodness its not just me .Thought i was losing the plot !
I was shameless yesterday in the online chat to Eon. I told the lady that I have two autoimmune conditions that are made worse by stress and I shouldn't be treated like this. She told me her mum has rheumatoid arthritis so she was very concerned about me. I never get angry with Customer Service staff. I used to be one myself for London Underground and remember what it was like to be personally blamed for every signal failure!
Thanks for highlighting this. I too can feel totally drained, emotionally and physically after having dealt with work related issue and I didn't use to have these exhausted feelings. So, perhaps it is not us, it is the condition. Enjoy the lie down
This illness is like being pecked to death by a duck. Yes, yes, yes. Having to deal with the emotional and physical aspects of PMR/GCA are stress enough, then add the stresses of daily life to that and it is enough to tip it over. I am a person who tends to stress over the small stuff so it really hits home. I had an endoscopy two days ago. I asked the dr. if my Valsartan, BP med, could be causing my stomach to bleed. She said it was possible. In my druggy haze and my desire to grab onto a quick fix I rolled with that, called my primary doctor to change BP med. Well, that opened a can of worms, made gastro mad. She had her nurse call me back. She left me a message on my machine scolding me for saying she said Valsartan was the culprit. (she is right, culprit is most surely prednisone) I will call back on monday and apologize. I obsess over stuff like that. I don't like upsetting people. So, yes. stress, even what seems like minor stress seems to trigger flares. Like you, these little annoyances would have slid right off me before this disease. i think it is because we feel so vulnerable. life has become more fragile and for most of us the book of our life has been completely rewritten.
My stomach has been bleeding since last June. I am sure Covid and isolation have played a part. Last winter our heating systems both went out. The systems were only 4 years old and put in at a cost of 22 thousand dollars. needless to say I was under stress. Our house was freezing cold. I had to buy space heaters and run them until the system was replaced. (2 weeks) Fortunately it was under warranty. So, like your situation, it was not the end of the world, but enough stress to trigger a major flare, high dose prednisone, more stomach bleeding, and on and on and on it goes.
There is a circular quality to it. So don't berate yourself for the stress of the squirrels and the gas company. Stress is stress.
As for squirrels, I hate the little tree rats. They got in our attic and chewed through our air conditioning lines.
My goodness, I don't see why your doctor should scold you like that. She knows you're ill and could have explained gently. That, plus your heating problems is a great deal to have to cope with all at once. I hope everything turns out for the best.
Your initial comment ''This illness is like being pecked to death by a duck'' made me smile as it reminded me of an experience I had nearly 40 years ago when fortunately I was still able to run. At the time I lived and worked in central London and walked to and from work through St James's Park. One evening when it was starting to get dark, a gaggle of Canada geese took a dislike to me and chased me out of the park, honking and pecking at my legs. It was pretty scary and, when I got home, I found they had ripped my tights and drawn blood. After that I took to getting the bus home in the evening. A few years later in a new job I made the mistake of telling the story to a colleague and, after that, it was the one thing that everybody knew about me. I once came back from holiday and met a woman who had just started. She said ''Oh you're Maria who got chased by the geese...''
roflmho. Geese are vicious creatures. Yea, this one doctor and I have communication issues. My primary, Rheumatologist, and oncologist are all wonderful physicians, kind, gentle and great communicators. My gastro is somewhat of a flibertigibbit, high strung, and saying something different each time I see her. The bleeding has been going on a long time. My oncologist is going to test my iron levels next time I see him. He is concerned about my anemia. The thing is every time the gastro does an endoscopy she comes in right after and tells me what she found. I get retrograde amnesia after the drugs that put me to sleep. Every day I remember less and less. Usually hubby is with me after. Because of Covid he was not there. Honestly, I have very little memory of Thursday's events. I can't comprehend why she does not understand that.
I hope she calms down and improves her behaviour. Doctors can be experts when it comes to their speciality but they're still very lacking if they can't communicate with their patients and end up making their anxiety worse.
From my own experience, stress plays a major part for me. I've always been slightly anxious and probably suffer slightly from OCD, and to cope with this I keep myself busy and focused, mainly on practical things, like gardening, painting and decorating. As a result I find it difficult to relax. Looking back I think PMR had been lurking for a few years before diagnosis. I had a blood test shortly after I moved to Cyprus (16 years ago) which showed an autoimmune problem that couldn't be defined at that time. Last year in March I spent a few weeks preparing the house and garden ready for our summer. Even by my standards I went overboard. In early May PMR struck one morning, and I couldn't get out of bed, go to the loo, dress, etc. This went on for 4 months until diagnosis. Prednisolone helped and within 2 days I got my life back. However, every so often, like this morning when trying to assemble a filing cabinet with my husband I feel the stress levels rise and pain in my shoulders, hips and tops of legs. As soon as the filing cabinet was built and in it's place, I started to relax and the pain subsided......
I think we just have to go with the flow and learn to adapt. I know if I throw myself into something and try to complete it in one go, I'll just collapse, so I tend to break tasks up into short-ish steps and plan rests in between. It can be a bit frustrating, but I think I probably get more done than if I forced myself more. In some ways it has made me learn some better habits, as I never have a huge mountain of ironing put off from day to day and week to week like in the old days. I iron things as soon as they are dry as I can manage to do a few things but not an enormous pile.
This is so familiar. I recall the statement you have to pick your battles but never really understood it until now. If I have a dispute that raises my adrenaline there are two things that happen. First, I feel I fly off the handle much more easily. Second, I end up in bed. I really don't think my family gets it or perhaps they don't believe me. Some battles unfortunately do have to be fought so I really feel for you in your plight. I hope you get things sorted. Just be prepared for what comes next. Ensure that you build in recovery time.
Thank you, that's very encouraging. I think my family are sympathetic and supportive about both my problems, but they don't fully understand quite how difficult and draining it is for me to have to deal with them. You're right, you do have to pick your battles very carefully. There are probably minor issues that I let go now that I might have challenged before but, who knows, maybe that's a good thing in some cases.
Irritating niggles for others seem to be bigger for us. I used to be efficient, confident with form filling, dealing with others etc but now it all feels like an extended nightmare. Thinking on your feet seems out of the question and carefully worded letters/emails like my old 'gas board letters' seem totally elusive. Pmr/gca, pred, ageing do us no favours. You are most definitely not alone.
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