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
Another fine question Lesley! I look forward to seeing the responses
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
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!
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
Thanks Andrea & Di
I'll start organising myself (again) and see if I can have something to show with trends etc.
Lesley
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
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
To go sick or not to go sick ...that is the question ?
were do i begin..... ouch could be a start tears another
Help please! I need to be on a complete lactose free diet to manage Colchicine side effects (based in UK, England)
