Do you keep a diary?

[Primarose]

I am on my second diary. Without it I would be lost as I can go back for reference any time I am not doing great. I know exactly what dose of preds I have taken and what I did that day.

I think that it's essential.

[Hidden]

Good idea... I should but I don't. I do the blog and that keeps me busy. I don't think I'm organised/disciplined enough to keep a diary, but it is a good idea.

[HeronNS]

I could, if I felt so inclined, match up my dose with what I did, records kept in different places. I do wish I'd also kept a record of how I felt, though.

[DorsetLady PMRGCAuk volunteer]

Yes I kept one as well! Invaluable to know where you etc,, and it good to refer to answer questions on here !

[AMG38]

I type my dose and how feel on the calendar on my I pad daily so can easily check doses

[scats]

Yes sounds like yours. It's helped me understand what is happening to my body and what it is responding to. I also impressed my GP when I used it to prove a point.

[peace_lover]

Not a diary, it a calendar marked with the Pred dosage I should be on and what I actually took, plus flares are marked.

[Pongo13]

My log started off long and detailed (ailments, food intake, sleep, meds). Now I am reducing (and shhh still coping) the log is short and sweet. Plus the doctor and I speak on the phone rarely; she seldom has much time for me and my log..... so I have found I "play her game" but then find clever ways round going at my own much slower pace.

[piglette]

I set up a nerdy spreadsheet which I update daily for dosage, also blood markers, doctors’ visits etc. I must admit it is quite useful.

[Mrs-CJ]

Yes I have pretty detailed notes. First I have a monthly spreadsheet where I record vits and prednisone dose, and bottom rows I have things such as yoga class, walking, gardening, housecleaning, etc (I record how long for some of these, others are Yes).

Then I have a 3 ring binder for notes about each day. Every day I jot things down about that day, but sometimes I need several rows. I also give myself a score between 1 and 10 (thisscale is big, but when I score a 7 I’m thinking 70% of my old normal). This daily score is an excellent way to scan how I felt at a particular dose and time. And I jot down my weight a couple times a week (I take my weight same time every day for consistency about that). On the left hand side paper in the binder I make more detailed notes about events. For example I recently had a bad episode of deathly fatigue and I’ve written probable/possible causes.

I am so thankful that I started doing this when I first got ill and before my PMR was diagnosed. I can look back at my notes, especially the left hand side musings, and often save me frustrations about sorting things out.....with pred head I need everything written down!

For example, I’m having a lot of trouble with lazy adrenals and have increased my pred from 2 1/2 to over 4 (have been waiting over 4 months to see specialist to have adrenals tested). I can look back several years ago when I was on just above 4 and see that the symptoms I’m now developing were what I had then.....worse pred head Check......silent acid reflux Check.....weight loss Check.....etc. I thought I was getting over all that, but no use burying my head in the sand!

[Dream21 in reply to Mrs-CJ]

Wonderful everyone is so disciplined. I tried it, but kept forgetting to update. I do have my labs printed and keep those, so I can see how my body is handling the meds and diseases.

[Mike1964 in reply to Mrs-CJ]

Wow! I respectfully pay homage to you Mrs-cj

[Mrs-CJ in reply to Mike1964]

Lol! It helps fill my day!

[PMRnewbie2017]

Yep, me too. Pretty much the same as many of the above. It's invaluable for working out what's going on and establishing connections between dose, activity level, symptoms etc. I would recommend all newbies do it for at least a few months initially because there's so much to take on board with these pesky illnesses and the pred head distorts memory.

[Hidden]

About to start my third diary. Very useful to know how I felt on different doses. Also record b/p and weight.

[xdbx]

Yes it’s absolutely invaluable! I keep a food and mood journal with an app on my phone and an excel spreadsheet. The app is really quick and easy to use throughout the day and the spreadsheet shows how things change over time.

I record all food, water, sleep, meds, GP test results, INR level, blood glucose, weight, exercise, meditation, Bristol stool #, pain, fatigue, brain fog/pred head, stress, mood, any other symptoms and anything else significant on a particular day.

It took a bit of getting used to and I feel resistant sometimes but it’s become a habit now and it is SO useful. Well worth the bother!

I’ve been following the AutoImune Protocol/lifestyle for the last 3 months and my daily journal has been essential to see how it’s working. It will be even more useful when I start reintroducing foods that I’ve eliminated for all that time.

A new item on my list is amber glasses. I’ve been having trouble sleeping in this hot weather and I often watch tv (blue screen interferes with melatonin production) in the evening so, for the last three nights, I’ve been wearing the glasses for 2+ hours before bedtime and my sleep has improved so dramatically that it seems worth recording.

I just don’t know how I’d be able to assess my progress, or show my medical team what’s happening, without some kind of food/mood journal

[ConventCassie in reply to xdbx]

ConventCassie

in a few seconds

Amber glasses? Never heard of those. Sounds like a good idea. Is that to watch TV? I read a book in bed with very dim light. Must have a similar effect as I sleep like a baby.

A food journal is helpful too. Especially if you hit a lot of carbs.

[xdbx in reply to ConventCassie]

Yes they’re for tv and computer screens which put out blue light and interfere with the production of melatonin, the sleep hormone.

[Chrob]

I just mark my dose on a calendar ,I know it’s going well or not by how long I’m on a particular dose for or if I up at any time .

[Linny3]

I started one last march after my 4th large flare in two years. Trouble is, can't remember to keep it up. I agree it holds a wealth of knowledge that I know I would otherwise forget.

[trish29]

Hello Primarose ,yes l've Always kept a diary and as I have had PMR for 14 years that's quite a few diaries..sometimes l look back on them and can see that l keep on going round and round and up and down on this Roller coaster ride. This year has been a hard year.

My newest GP is quite PMR friendly and l always take my Diary when l see her and she's always impressed how l write everything down and so does my Osteopath, l also take it when l go to my Rheumatologist. It's getting harder as more problems have occurred in the last year and at the beginning of the year when l had a dislocation to my right shoulder and l have muscle weakness in both upper arms ,hence visits to my Osteopath for strapping. At the moment l am no longer allowed Bowen Therapy and Ultrasound which l used to love because of the PMR inflammation.

In my heart I feel that if I'd had the GP l have now all those years ago then l wouldn't be like l am now and In a wheelchair. I think Diaries are very good to keep track of what medication you're on and and Blood pressure readings etc, all best wishes trish29

[nuigini]

I too have always kept a diary. It's a monthly calendar where I've recorded the dose for the day and brief comments on how I felt on the day for over four years. The diary also shows travel days and other significant events that may impact on how I'm feeling/reacting. It's been truly valuable in helping me identify patterns and understand how my body is reacting to reductions, stress, overworking muscles, temperature changes...all sorts of things.

[Jackoh]

Yes I keep a diary- date, dose , score out of 10 how I feel and a few lines about how the day went and any significant problems/ progress. Takes couple of minutes to fill in and I find it invaluable.

[ackagee]

The day I was diagnosed with PMR - 7 Sep 17 - the New Zealand Civil Aviation Authority suspended my Class 2 Aviation Medical Certificate. My GP suggested I keep a dairy logging Preds taken, ESR & CRP test results, side effects experienced, flares etc. So I set up an MS Excel spreadsheet. 8 months later, with my daily Pred dose down to less than 10 mg, CAA let me retake my Class 2 Aviation Medical exam. Which I passed so I'm back flying again. I'm keeping my PMR spreadsheet going but just logging Preds taken & my monthly ESR & CRP blood test results. Which have been in the normal range these last 9 months. But I have added a 'cumulative total Pred mg taken' column too: I read somewhere we should try not to exceed a total of 20,000 mg Pred. My total Pred tally is 4,030.5 mg with me currently at 8.5 mg Pred per day on the 'DSNS' taper so I'm good for a while yet. I've had 3 flares, most recent one clearly stress related: regaining my Single Pilot Multi Engine Instrument Rating was quite tough after 8 months of being 'grounded'...

[Telian]

I take my hat off to you! A very worthwhile need for keeping a diary I would say, and well done you getting your C2AMC reinstated - what an inspiration! All of that seems light years away to me - the way I feel I couldn't be relied on to take you where you thought you were going in the car never mind a plane!