theseatedview.com/2019/01/h...
After Daisychain's wail of anguish I found this where Lene writes a detailed approach to pacing for people who are really limited by chronic illness and unable to get their head around how little you have to start with.
It bears reading more of her blog - to see that she really does know what's what!
Yes, easy to say, but maybe not so easy to do.
I, along with many others on here including your good self, give that advice almost daily, but when it comes to ourselves, do we really follow it?
Sometimes I guess we do, but I know from my own recovery from recent hip operation some days I’ve done too much. Maybe not consciously, but on a nice day I’ve walked a bit further than recommended because yesterday I couldn't due to weather.
Not exactly trying to run before I could walk, but you get the gist!
Must do better - now how often have I heard that? 😳.
But at some point you DO have to learn to accept things are different - because when you don't you slide down the snakes instead of inching up the ladders. There is no easy answer is there?
Yes you have to accept - and generally I think I have with GCA and now arthritis.
But I do think it’s human nature to be reticent about acknowledging your frailties.
Or is it just me being a stubborn mare! Viking and Aries not a good combination at times! 🤦🏻♀️😳
I don't think it is just you - well, obviously it isn't or there wouldn't be a need for such posts would there!!! But how can you convey the need for that awareness? Or is it part of the depressive part of the inflammation?
Yes that certainly does have an affect on your mental attitude - as does any chronic illness.
No easy answer unfortunately.
The mental changes do have an impact in lots of ways , and the change in physical abilities can increase other mental issues.
But , I think it has alot to do with everyone finding it hard to break or stop long held habits in lifestyle , even though you know it will make recovery easier it isn't what you want to do.
Giving up being the " doer" the " organiser" or " leader" in the family , even for your own good , is no easier than trying to give up food or alcohol to improve other illnesses.
It's unfortunately what you have to do , not what you want to do , and it can have a negative effect on our mind and mood in just the same way .
I agree! Acceptance is one of the most difficult things to achieve.
I’ve been unable to go out for a week and have got very frustrated. “Is this it for me now” I thought.
I don’t get depressed but I have been ‘down’. Too many ‘polys’. I need SUN!
Wetteronline is suggesting spring in the middle of the week - you just have to survive a rubbish weekend they say!!!
😂😂😂😂😂😂
Oh if it’s only a few days to SUN I might just survive.
You don't just slip down the snakes , you fall into a pit full of them like Indiana Jones.
It's hard to balance not scaring people about how much things may need to change for many people as they recover at the beginning and convincing them that even if they think they've slowed down they still need to pace themselves more.
But you and DL do a great job trying , and this article and blog will help them more too.
Thanks , Brains xxx
Not at all good with snakes - my absolute bete noir! Have been since I was a child! Gives me the shivers just thinking about!
I can cope with the snakes but its the bins and the screaming hebee jebees that you sometimes get with the GCA / PMR that can get me down 😘
I love snakesxx OH has said He will leave if I get one. It's been very tempting to go buy one!
I’m with OH - every step of the way! In fact he’d probably get killed in my rush to get away.
He wouldn't be far behind believe me and I would not expect him to be a gentleman in any way, so if you fell he would just go over you!!
Very Timely PMRpro thank you for sharing this link. One of the things I believe I struggle with is setting expectations- my own and those of the people around me. It is still the early days for me just under 5 months since diagnosis, and I am still learning. These resources are invaluable. Need many options or plans for the day. I also took a look at Lene’s depression blog, I tend to push depression to the side and not deal with the underlying issues at some point they need to be addressed- chronic illness changes your life, it is healthy to acknowledge that and accept it and prepare for the changes that you will confront.
So thank you for sharing!
Yes - perhaps I should have said to follow the link relating to depression...
It is easily accessible in the article. Both are important🙃
I know and I had read it - but not everyone thinks of that
So true, I did not think of it until my primary care doctor asked me about it yesterday day and I ended up in a puddle of tissues. She assured me I was not clinical just needed to take a step back and start thinking of things in a different lite. It was refreshing and I was truly surprised at my initial reaction. You are right though I think we all tend to push this topic to the side not on purpose just because...
Sometimes it's necessary to finally have the puddle of tissues reaction to it , even if the Doctors surgery isn't where you probably wanted to do it.
Releasing all those fears in a pool of tears is cathartic , it shows you have realised that something is overwhelming you.
It also releases all of those negative feelings , and those depressed thoughts to make space for acceptance and positive changes.
If we accept that temporarily we have to act differently while we have this illness our path to recovery won't be 100% pain free , but it will be quicker , less painful and easier to cope with mentally.
We will be less likely to slide from having depressed and anxious feelings down into Depression and Anxiety.
One of the biggest things I learnt to help me cope with all the adjustments in my life and to the pain was to remember,
" What I do is not who I am . Just because I have to act differently does not make me a different person on the inside. I can still be me , just a me that has to take care of myself more than others for a little while. And because I am me , I know that I will be a better , stronger person when I come out on the other side."
Talking openly and honestly on this forum who understand the physical and mental changes we are going through helps to keep positive and not allow the mental side effects to take hold.
And , if you need extra help , GPs or Rheumys can refer you to counsellors who specifically work with people who have mental health issues related to their pain or illness.
Writing a dairy about it can clear your mind and using some form of art or creative activity (watching a film , listening to music, reading positive blogs or websites ) of a level you can cope with also helps to distract your mind from falling into negativity.
Take care , Bee xx
Thanks Bee - you are absolutely right!
I started doing The Artist's Way (juliacameronlive.com/the-ar... with a group. Haven't kept up because of pressures of the move and all, but the first week I wrote my three pages one morning (you are supposed to write three pages every morning) and it must have hit something because I spent most of the rest of the day in tears. Since then I've found my attitude towards my horrible reno and the blokes responsible has shifted from beating myself up for not overseeing them more carefully to a justified anger at their incompetence. Feel much better for it. Sometimes it doesn't take much to change a depressing attitude to a healthier one. It's finding the "something".
Perhaps the " something" you could try is putting red ants in your contractors underpants !
Probably won't get the job done any quicker but the results may give you a very positive feeling of satisfaction.😋😂😂😂
Yes, I do my morning pages, too. It helps to clear away negativity carried over from the previous day and I either end up laughing at my ridiculously exaggerated sense of grievance over something relatively minor or getting the tissues out at unexpected lumps in my throat as a truth surfaces that I've been unconsciously avoiding.
I have her book 'The Artist's Way for Retirement' after my daughter recommended the first one which she has had for years - I always loved seeing her sitting in the garden in morning sun writing 'her pages'. (Sun would be good right now!)
Well said xxx
Thanks for the link.
I also have found something that some may find helpful.
A magazine called Living Quietly which is available on Kindle and Readly.
They have produced The Housework Issue ( I know! ) which contains advice for people living with chronic illnesses. It has some good suggestions which may help especially if you're new to all this.
It DOES tell you to avoid housework??????? If it doesn't - I'm not interested...
No, it tells you to get someone else to do it! Even suggests bribe the children. Actually shows someone on a sofa and says not to try on bad days.
I know you, like me, are not interested in such activities. I was amazed to see a magazine on this subject and just had to look out of disbelief. It is actually written by people with AI diseases and some of the advice would be helpful to those here with higher standards than us.
Love it!!!!!!! Don't need the book though - I've seen the film 
Though to be fair the other day I looked at the dust bunnies and even I felt a tiny twinge of "Um, best fetch the brush..."
Are you OK? Should we get help?
No, no, it's fine. I sat down with a G&T and the feeling passed...
Phew! For a minute there....
Calm down - I've been at this lark a LONG time!!!!!!
Thought you might like to know that I read the above to OH as I knew he'd enjoy it. He's now upstairs cleaning the bathroom. Result!
Glad to hear it! Thought might have to send for the men in white coats!
Think they got me a while ago...
My spider squatters would be very distressed if I finally decided to get someone else to clean way their cobwebs , I don't think it would be right to destroy their homes and evict them , they been there so long now and settled in so nicely😋😂😂
We give our spiders names.
DIL was very fussy about cleaning and the grandchildren were facinated that Granny had pet spiders.
We name ours too , the biggest ones are called Burt and Colin.
Also , they do more to help around the house than my eldest daughter .
They pay their dues in the summer because living in the country near fields they allow you to leave the windows open by keeping the flies at bay.
Mine have to live in the basement. I don’t allow them upstairs or they meet with my fly swatter. I don’t feel good about it though 😱
I have given my spiders names too, I am so pleased I am not the only one.
We have pet spiders as well. Some have names. Daughter and SIL both hate spiders so didn't went grandson to do the same so I feel obliged to let the spiders stay!!
You don't need to worry about dust until people start writing in it. Then a swipe with a cloth as you go past is all that is needed to move the offending dust to another place. This method of dust removal can be repeated as many times as you like. If you can find a small child to run about near the dust this also works!!
Been doing it for years! No small children available though...
Wait for grandchildren, they have many uses and they are free or cheap.
I'm years ahead of you! My grandchildren are nearly 20, just 19 and 17+. The boys are about as keen on cleaning as me. The grandaughter is occasionally keen on sorting her mother's inabilities in the same direction but is a bit far away to do much here...
Oops sorry for assuming you didn't have them yet. X
I was an elderly prim (a whole 27+) but my daughter made up for it and I became a pretty youthful grandma! And the nearly 20-year-old came into the marriage ...
I had the first when I was 29 and she repaid me by making me a nanny at 49!! I love him dearly and she keeps threatening another and now her sister is getting married in April and I am wondering how long it will be before she announces the patter of tiny feet!!
Sorry to disagree - my grandson’s not free nor cheap - although at 6’4” and 16 stone he does have his uses! But dusting isn’t one!
I suspect the price increases with age and maybe height? Even the tooth fairy is costing more these days!! Our little helper is very selective over what he will do depending on the day or mood and the quality of his help is not always that good but as i dont care about dusting he does just enough to make it look like someone at least attempted to dust!!
Oh the price certainly increases, as does the appetite! But I guess that’s why he’s 6’4” & 16 stone. Rather feed him for a week than a fortnight! 😏
Totally!! Oh the things I have to look forward to!xx
Oh yes - ours all look down on us but the two boys are both far taller than their parents and the older one would eat Buck House out of house and home!!!! The younger one probably eats for Scotland too but is so skinny it isn't true!
Our youngest dsughter is 5ft 3inch weighs 7stone soaking wet and will out eat her 6ft partner. If she comes here for sunday dinner she goes on about being hungry from the minute she steps through the door, bugging me to find out when she will get fed!! Her sister just has to look at fiid and she gains weight much to her disgust!!
I think practising forgiveness is absolutely key! Thanks PMRpro.
Especially of yourself!
Precisely!
I ought to be an expert on managing chronic illness as come Monday next at 8.10pm I will have had ME/CFS for twenty-eight years.
I firmly believe that “Pacing” is the best management strategy in dealing with the chronic nature and symptoms of not only ME, but also, the ongoing physical and mental limitations placed upon us by GCA/PMR.
Do I apply that strategy? Only when it suits me or when I am so unwell I am forced to do so. It’s not my nature to pace myself which is why I probably contracted ME.
I write a “to do” list every morning but it seems to have more and more crossed off and carried forward notes since I was diagnosed with PMR. My carried forward list pretty much resembles a roll of wallpaper.
In conclusion, I think a lot of how you deal with long term chronic illness is defined by your character and nature. I know mine certainly is…
I like Lene's technique of dealing with the "to do" list!
Do you mean the "be flexible" bit of the blog? Because I'm totally with her but just can't do it!
No, the insistence "Do 3 and walk away..."
Though I rarely manage 3 ...
Try the, " To Do " List I just told Pipalina about that my MIL uses , you nearly always manage to tick off three things before breakfast. Then you get the whole day free!😋 xxx
I write my to do list on post it notes, stick them in the diary. If I don’t feel like doing anything I take them out and throw them away.
You could just stick them on pages a few months later!😂😂😂
No never, would only nag at me. 😫
It also has to be defined by what level of symptoms and pain your AI causes in you personally.
We may all have the same AI disease but it won't be the same journey for us all.
Some may have mild conditions , others severe symptoms , and many , like yourself may have other illnesses or injuries which mean that the level to which PMR or GCA impacts on their physical abilities or pain can be a lot different than it is for others.
My mother in law always writes a To Do list which she pins to the fridge but it begins it with what before GCA/ PMR and my other AIs seemed quite funny ridiculous to me .
" Get Up" , " Go to the Bathroom" , " Take Meds" ,
What she told me was that it meant that she could tick off three things even before breakfast that made her feel good from the get go.
Now I have this condition I can understand how this sort of list is positive and invaluable to a having a good day.
Especially , as some days , for some of us , even ticking off item 1 can be a struggle.
xx
I look at the posts and realise thst I am very lucky that I don't have such a hard time with my pmr as some do. Yes j have pain and the fatigue and the side effects of the pred mean I will probably be attending my daughters wedding in a posh tent rather than the very expensive dress in my wardrobe but I can still get around quite well and the pred is gdoing it's job with all the prm symptoms. What I don't see or get is how my character effects my pmr. I am an extremely strong woman who has never let anything including working in a very male environment get to me. I don't take prisoners in or out of court. So in theory I should have been able to tell PMR to take a hike and it would have meekly disappeared. If I had only known that was what needed doing I could be spending my time diving. Something j had to give up because of pmr. How you deal with pmr depends on how bad your pmr is and how much pain you are in not on whether or not you have a strong character.
Hello PMRpro 
This was exactly what I needed to read
Thank you for posting it I shall keep referring to it as I struggle with pacing myself
Take Care x
Have I given you this?
healthunlocked.com/pmrgcauk......
You have to let that gorilla stay snoozing ...
No , but now you have I shall have a good read
This will be a struggle for me as I am no good at change but I think I am realising I am going t have to make some especially after today
Thank you for the link x
I think you'll most of us here were doers and find pacing very difficult. You'll get lots of help and support here. Good luck!
Thank you scats
I am so pleased I have found you all I would be lost at the moment had I not
I hope you are keeping as well as can be x
I have added some replies to the post about things that I remind myself of to get me through , if you didn't see them earlier you might find them helpful .
And , don't hold back from posting at any time you need a bit of advice , a place to rant and cry , or just some mental support in these first weeks , we all want to help you .
Getting your head settled and understanding how it affects you in these early days is key to being prepared and being able to remain positive.
The words I tell myself , I put in reply to Mks99... above I find they really help when I am down.
I also wrote a post at New Year of my Points to Remember ( or Mantra in other words) for 2019 that some members said they liked and found useful , it is helping me , it might help you too.
Take care we are all here for you , hugs , Bee x
Hello @Blearyeyed
What a lovely reply , it brought tears to my eyes , as it was so caring and I am feeling so very low
I will look at your posts you have pointed out
Thank you so much for your reply x
That's no way to talk about the OH 😂😂😂😂
I think I get thrown because I have not yet adjusted- I still see myself as I used to be, I think I can just run up the stairs and grab what I need when in all actuality I can barely walk up the stairs. I need to figure out who MKS 2.0 is what her life looks like and not feel guilty about it. Understand my new reality and make it the best I can. It is great to have some new tools to use.
Good tips... on living with a chronic illness. Blog look quite interesting as well. Ta.
Lene is brilliant - especially when you go back to the early days and her stories about the RA starting being in hospital for months as a teenager and coming out with fused hips and reliant on a wheelchair. And what she manages to do.
I'll check it out! Cheers
Very good post. Pacing is our lifeline and I liked her a b c d list idea to add to my toolkit. Thanks
This is such a good resource, thank you for posting. X
Thank you so much!!!
Thank you for sharing that. I think I'm generally getting better at pacing but then I have a tendency to get overconfident and blow it! I have a fitbit that tracks my steps and since finding I have osteoporosis think that maybe I should try to get more exercise. On days when I don't go out at all I'm quite sedentary and may do as little as 500 steps. Rather than setting a goal of 1000, as I have done in the past, this time I looked at my average and decided on 700 as my minimum. So far it seems to be working. Once I'm sure I can generally do that I'll have to make sure I don't get carried away though!
Agreed it is very difficult when one has been a 'doer', ie., Aries etc. Do try to pace myself, but on the better days do too much. One thing I can do is embroider (when the lads are not too bad from osteoporosis), and will take on unfinished pieces, finish them, no charge, only postage, and ask for a donation to saving Scotland's Red Squirrels. That way I can sit down and do something useful, as long as the washing etc., done. That has been helped by selecting certain days of the week for certain items.
'listen to your body'.Many many years ago, my GP in SA, told me that. That was long before GCA.Doesn't matter if you're the only 1 resting at 10am, 2pm, whenever. Your body is telling you to rest. I have, now with GCA, been known to get into bed, fully dressed, because the tiredness..not now..has overwhelmed me. Yes, the house needs cleaning, blinds need to be fixed, and I need a new mattress. Have only just caught up with HU. NOT beating myself up. Just s-l-o-w-l-y-.getting things done.
It really is all in your point of view...
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