Keep a "diary": I finally took the plunge and... - PMRGCAuk

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Keep a "diary"

Lin-lou
Lin-lou

I finally took the plunge and recently began joining in with my two-pennorth(!) having referred to this excellent site from early along my almost three years of PMR. The wonderful people on here who take the time and effort to add whatever help they can, have been and still are making more difference to people like me than they might realise! One thing that sticks in my mind from way back is something I would like to pass on to anyone else who is new to this site. I can't remember who advised this and my apologies for not being able to credit her/him with it, but the tip was to ***Keep a diary of how you feel, your dosage of preds as you go along, and any effects the reduction of preds has on you, also anything else going on with your health at the time if you should have a 'flare'. If you can, also keep a note of blood test readings alongside.*** I found this advice invaluable for referring back to and always take a brief copy to my Rheumatology appointments, very useful when the memory struggles to recall things! Thank you to whoever made this suggestion some time ago (please step forward!) and I hope it will help someone else as much as it has me!

28 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi, Think it might have been piglette. - not sure

I've kept one all through pre-diagnosis (came in very useful for reasons I won't elaborate on in public) and also through treatment, still going now although off Pred.

I started years ago keeping notes when my husband was ill mainly because he couldn't remember what effects the different drugs had on things.

Must be the public sector training, or maybe I'm just a nerd 🤓

Still you never know when it might come in handy.

Lin-lou
Lin-lou in reply to DorsetLady

Thanks 'Dorset Lady'. Perhaps Piglette will let us know if it was her. It came easy to me, too, to keep a diary of sorts having been a secretary all my working life (long retired now). My family have often teased me about "my notes" for everything! I've gone a step further and have a separate file marked PMR just to keep it all neat and together! Like you said, it must be our past training.😊 🗒 ✏️

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Lin-lou

Absolutely! And who does the rest of the family come to when they want to know something! 😉

piglette
piglette in reply to Lin-lou

Hi Lin-lou, as Dorset Lady said I set up a spreadsheet being a nerd. I update it daily with my dosage and have a colour code for how I feel. I have even started putting future doctor's appointments and blood tests on it. As I said I think I am a bit nerdish! It is actually incredibly useful as I can see when I last ordered medication etc.

Piglette, the main things is: it works for You!

MB :-)

Not any more, my computer has died!

Hi

I do and have done for 2 years and it has helped identify some problems I had on higher does of Preds which I have had to return to recently

Things you tend to forget about

Also put blood pressure readings down as well

PMRpro
PMRproAmbassador

I know I have mentioned a lady from another forum who always kept a diary of her dose and effects/side effects which she found very useful to look back at when something happened. Piglette keeps spreadsheets I think.

I'm too lazy to do it ;-)

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yes

Yes, but you keep it in your brain! Us non-scientists, non-medical people need all the help we can get!

PMRpro
PMRproAmbassador in reply to DorsetLady

LOL!!!!!! :-)

Lin-lou
Lin-lou in reply to DorsetLady

So true, DorsetLady, and thank you for all the help you give on here, too!

Lin-Lou I absolutely agree with you about a diary. I have always kept five year diaries even before getting PMR and I find it really helpful to look back at previous years. Having just reached my one year anniversary of Pmr it is hugely encouraging to see just how ill I felt this time last year compared with how I am today. It also gives pointers to where I was going wrong back then and making things worse for myself. Pacing is the big one in that department! I have also discovered how much I have changed in that time not the Duracell bunny I used to be but a much more quiet life person and happy to be so. I also agree that my experience would have been very different without all the wonderful people on this forum. Too many to mention but you know who you are.

PMRpro
PMRproAmbassador in reply to Brixhamhampster

I do often tell new people who are despairing that they will look back in a year and be amazed how far they have come!

Lin-lou
Lin-lou in reply to PMRpro

Yes, PMRPro, a large part due to you and certain others leading us in the right direction so often!! Thank you.

Hear, Hear, Brixhamhampster, well said :-)

Hi Lin-lou

Thanks for your post and 'taking the plunge' / sharing your experiences. This forum needs people like you, especially ;-)

This topic came up some time ago, and there are various methods for tracking / monitoring Cause and Effect re. the dynamics of PMR symptoms & side effects / Pred reduction side effects / external factors and so-on. In my opinion, none is 'better' or 'worse' than another - the main thing is to find and use a method that works for You in terms of Making Sense of things.

It seems that the more scientifically / analytically minded amongst us like to use 'hard' data / metrics / spreadsheets / apps etc. to make sense of things. Others, maybe with a different Learning Style tend to just jot-down a broad narrative to record events, associated feelings and a thumbnail sketch of 'how it's going' overall.

I think the main thing is, any tracking / monitoring 'method', however reliable (or otherwise!) is likely to be better than tumbling into a state of helplessness, despair, and a loss of any kind of control in, or understanding of how the PMR process works over time. It's a long-term illness after all: and to my logic, the tracking / monitoring method should be 'bigger / longer picture' more than micro-analytical if it's to go at the same pace.

Although I can be quite analytical, I've settled on the latter ('looser'/ narrative) method since I well-know that over-analysing what is in fact a very complex, fluid and unpredictable process can be very stressful when you still can't make sense of it after all the number crunching! And, as the experts here will tell you, PMR feeds on Stress...

It's patterns / trends that I look for when going-over the previous few months of whatever. Not an essay, just a few numbers (e,g, pred dosage / bloods etc), symbols and one-word notes in my diary to keep track of how I felt, when, and why at any stage. It works for me, and my memory does the rest ;-)

My opinion? Whoever gave you the advice (that you quoted above) got it pretty much right.

MB :-)

Thanks Markbenjamin. Sounds as if you've found the right way for you and I agree, any way that suits is going to be a help. I don't keep an actual diary, just notes with dates and info on an A4 sheet in a file, marking important facts, eg Pred doses and their dates, highlighted to stand out. I then either rewrite a slightly briefer version for my next rheumy appointment, or if neat enough will just scan and print a copy to take. However, the main use to me is to be able to look back to see how or what things affected me when reducing or when extra stress occurred (particularly in my 24/7 caring role with my husband) that in turn brought on pains or fatigue, etc. Not exactly the same method as yours but basically keeping the same sort of info that works for each of us and as you said, it was very good advice to be given, like so much else to be found on here!

Agree with Markbenjamin totally, whatever works for you.

Given many on this site experienced emotional trauma prior to onset, I do think it is important to also record emotional response as well as medical details and physical response. Especially after my somewhat peculiar and unexpected experience today!

Today I found myself getting extremely stressed when a neighbour was complaining about the workman's mess! I was so wound up and angry that my neighbour was complaining so vehemently about such trivia, that I physically felt my thighs and calves tightening and my back aching the more my neighbour went on. It wasn't even my problem! Up until this chance meeting I was having a good day! I didn't really respond to my neighbour except for a few 'oh dears' in what I thought were appropriate places.

By the time I got indoors ( only about 5 mins later) I was exhausted and needed to lie down and have a sleep! Why did I feel so stressed about this trivia......... So out of character and such an extreme response for me. I don't have a clue. DER!!!!

To give some background and put into context why my response was so sigficant to note I am a former Headteacher. Colleagues always noted and marvelled at my laid back attitude and unerring ability to deal with stress. Yet today I couldn't deal with a moaning neighbour and until today I thought I knew myself so well.

Could be a whole host of things......... Effects of Pred, onset of an infection, PMR symptoms not quite under control, sudden intolerance of others etc etc. You have all warned me that stress is a significant trigger and I think today has really surprised me , giving me great food for thought.

If I keep a diary, including life events and emotional responses, as well as the facts of time meds taken, dosage, sleep pattern etc maybe I will see if a pattern emerges over time and learn from it. Particularly in dealing with stress that I thought I had a good handle on. Obviously not!

Thanks for sharing the diary idea Lin-Lou. I think I need it!

Maralyn59. You are so right about emotional triggers bringing back instant pain. I have experienced this on a few occasions during my PMR "journey " and they have mostly been insignificant events. Even nice things can have this effect. I had a really lovely text from my sister saying how much she appreciated me and "wham" no sleep that night and aches and pains all over the next day. I have a lovely visit due from my family at the end of august and I am having to be really disciplined about any excitement unless I spoil things for myself. It is a crazy illness but at least this time I am getting clear signals what is causing any symptoms. Thank you so much for your post it has made me feel less of a "precious princess" about my symptoms. Deep breathing and relax!!!

PMRpro
PMRproAmbassador in reply to Marilyn1959

I suspect intolerance of others is a marked symptom of PMR! It is for me...

Lin-lou
Lin-lou in reply to Marilyn1959

You're welcome, Marilyn. Wow, what an encounter and probably so alien to you in your reaction from what you wrote. I smiled when you said your past colleagues used to remark how laid back you were, as I, too, have often had comments about how I am "so calm" and "don't seem to get upset", "have the patience of a saint", etc. I would add, that's outwardly!! Maybe there is a link here with PMR people keeping things bottled up, thereby causing more stress to our bodies!! As I've mentioned elsewhere, my days are filled caring for my elderly husband who has Alzheimers (plus other things) and there just seems to be no way I can keep stress-free long enough for getting on top of this PMR. Enough of my moans, and back to the diary/record keeping, the end of your post says it all!! Actually, I found out long ago that when I was really stressed and upset, it really helped to write down what had happened. It seems to release some of those unwanted pent-up feelings. Sharpen those pencils!!

It sounds very psychologically healthy to me Marilyn. Emotions, identifiable right there on the surface. So much of your work stress had to be hidden as you were the very visible leader. Silly woman! ( I mean your complaining neighbour). Some people just suck your energy, avoid them!

And yes a diary is a very good idea. The merciful blurring ( like after childbirth) of memory makes us forget just how ill we were and therefore just how much progress we have made.

Hidden
Hidden

I did this having read it on the forum. Best thing I did as I had written evidence to take to the Drs in my battle of steroid reductions. So yes thank you to that person.

Hi all, I am so glad I keep a diary. Even today I referred back to March 16 to check what I did about the side effects I had on 30mg. Was useful to see they were exactly the same as now as I have had to go back up to that level. Also kept notes of what I ate and drank so back on the peppermint tea for me and off of the latte :( As in the great Oscar Wilde play The Importance of being Ernest.....one should always keep a diary as it gives one something interesting to read on the train........in my case the loo :D

All the posts on this thread have motivated me to start writing in my journal again. Thank you all!

I have an app called "journal" on my phone .You can tag your daily entries for later reference, as well as attach photos and links.

I had started it for something else, then included a PMR tag and a tag for other subjects included in my musings.But alas, I'm quite undisciplined 😥I am constantly trying to be organized. PMR requires most of the attention and energy I can muster!

I totally agree, having a journal is a must on this PMR Journey.

I keep an historical calendar of sorts showing the dose of prednisone on any given day and very cryptic notes of significance on how I felt that day, what I was doing etc. Being able to look back has come in handy many times in terms of looking for patterns before deciding the timing of reductions. The notes have enabled me to identify "My PMR Normal" and to pinpoint pain that may be indicative of a flare or simply prednisone withdrawal.

I also keep and daily on-going historical record of my daily prednisone on 'the cloud', which enables my husband and eldest son to access the information if needed.

Good idea. I have kept a diary since diagnosis (the diagnosis being a blessing and a curse as we all know) -- I think I started writing just after my first miracle dose of Pred. I had already read the Gilbert book and I didn't want to forget the terrible pain/immobility/weakness I had come to know, so I wouldn't become impatient and rush the Pred taper at any point. Also helps me keep track of reduction plans (always tentative of course), symptoms, progress (yay!), etc. And then, there is this forum, which is the most help of all. Thanks to everyone!

Lin-lou
Lin-lou in reply to cctraveler

Glad you keep your record of things, too. It does help. Smiled at your "miracle" dose of Preds as I've just written those very words to someone else. It was exactly like a miracle with the first dose and within hours I went from being almost completely immobile and in excrutiating pain, to feeling as if it truly was a miracle with the pain, etc. all being wiped completely away! When I saw my GP a few days after that he said I'd looked 20 years older in the midst of all the raging PMR! I'm sure a lot of us started our Preds with that same "miracle" feeling.

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