How to start a diary?: I've actually got as far... - Behçet's UK

Behçet's UK

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How to start a diary?

lesleyg profile image
8 Replies

I've actually got as far as purchasing a nice notebook. Any tips on where to start and how to set it out? Especially as I'm starting late - I'd estimate I've had the disease for 15 years and have been diagnosed for 2. One section will be dedicated to current medications - it is much easier to hand the doctor a list than try and remember.

Lesley

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lesleyg profile image
lesleyg
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8 Replies
devonshiredumpling profile image
devonshiredumpling

Another fine question Lesley! I look forward to seeing the responses

andreafm profile image
andreafm

Hi lesley

This isn't as easy as it seems is it ?

I tend to produce my own table on a computer word document with the major symptoms across the top in columns and the date down in rows. I then use a score out of 5 to score in the boxes that cross reference to the symptoms. I also have another column at the side which gives other comments etc I might like to remember such as something you ate or new medication start.

I still seem to get in a mess though, because sometimes you wake up feeling good and would score 5 for instance and then it goes downhill as the day goes on and by tea time it's a 2.

any suggestions

Andrea

lesleyg profile image
lesleyg in reply toandreafm

Hi Andrea & Di

We must all be on the same wavelength - I was wondering if a table on the computer would be better. Also, I'm a bit afraid to look like a hypochondriac when I go to see the specialists.

Les (or Lesley - I don't mind either)

devonshiredumpling profile image
devonshiredumpling

I like this system Andrea - I tend to do a timeline. I list my particular symptoms down the LH side and make comments in the RH column. I write the dates in bold and where there is a correlation with other dates I highlight these.

Sounds complex, tis much easier to do than to read about!

andreafm profile image
andreafm

Hi lesley

I find it easier on the computer because I can alter the results easier if things do change during the day and can use a different colour to flag up something important.

I know what you mean about looking like a hypochondriac and I now only use it when I want to emphasise a problem or a pattern of problems.

Other than that I make a summary of the worst symptoms/improvements by using the diary. It is easy to forget what you have been suffering with when you haven't seen your specialist for some months and they are changing all the time.

For new specialists I have a History Table which includes a list of symptoms with the diagnosis at that year and then another column with the name of hospital and consultant I was under at the time.....this I have found to be invaluable as my history is pretty long and would take up too much consultation time to say.

Andrea

lesleyg profile image
lesleyg

Thanks Andrea & Di

I'll start organising myself (again) and see if I can have something to show with trends etc.

Lesley

devonshiredumpling profile image
devonshiredumpling

Andrea and Les

Great minds and all! Andrea I have exactly the same History Table, except I call mine a timeline. Apart from the medics loving it, I found that writing things down like that and highlighting relevant points made the course of the disease much easier to see and (sort of) understand.

And, boy, do I understand the hypochondriac fear!

Di

lesleyg profile image
lesleyg

Yes, I said to one of my specialists that I'm sure I've got 'neurotic' labelled on my file by some of the doctors I've seen over the years and he just grinned. He also told me he was on my side

Lesley

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