Hi everyone what ever happened to flaming june ever since we got some garden furniture for me to sit out on it has been cold windy wet or overcast.
This will probably sound like a stupid question but I’ve seen posts where people mention keeping a symptoms diary do you do this on a day to day basis because my symptoms rarely vary or do you just note when something begins. I o need tomake a list of them before I see the neuro in September as I am likely to get forgetful.Got Rob to walk me to village shop for tea bags this morning and came back without them I think he’s getting as bad as me.Any help would be useful thanks Sue
I use the notes app on my mobile phone so I can make notes as I go. As my symptoms vary day to day I write them as they effect me. Did stop for a while as it was getting a bit dull listing the same things everyday but am back to writing daily because otherwise I lose track of things.
Snowqueen x
Thanks Snowqueen I’ll have to get a small diary as I don’t have a mobile phone I used to have a really good memory but now it is terrible I have to write everything down to remind me that is if I remember to do that. The sun has come out here now I am ready for bed just counting down to 8.30 if I don’t fall asleep in the chair.Sue
I think there’s quite a variety of views on this - I’ve never, ever done it, because I do not want to be preoccupied with my symptoms to the point of keeping a diary.
I tried to draw up a timeline of past suspicious incidents after I’d already been diagnosed, because the neuro asked me to (I think they were trying to work out how long I might have had it, and how often I’d been relapsing).
But I’ve never kept a daily, or even weekly log. I tend to keep everything at a pretty high level (e.g. “In about November, I had some lower body numbness”.) I’d get very depressed if I was writing down every single thing that happened, and think I’d even start searching for some symptoms that weren’t there - not positive.
Tina
Thanks Tina I think that is true I do tend to feel depressed when I realise what has changed in my life I just need to organise my thoughts before my first appointment so I don’t get brain fog I find I can easily get upset and flustered then I get more upset .But hubby will be with me and hopefully he’ll help. I don’t seem to have relapses just a gradual worsening of some symptoms so I will just need to make a time line. One problem is our GP isn’t very good at noting all your symptoms they seem to only fixate on one at a time so most of my problems aren’t even in my notes but we are working on this.Sue
I think it’s important that your neuro does get a complete view, but it’s unlikely they’ll need exact dates, times, and duration of every individual symptom, so it will be fine to condense and simplify.
You can say things like: “In April I had intermittent burning in my fingers and some urinary hesitancy for a couple of weeks.”
You don’t need: “2nd April, 10:00-12:00, burning in left hand again. 4th April 15:30-17:30 approx, burning in right hand again. 7th April, trouble weeing - four times.” Not only will they not have time to work through every incident in that level of detail, but it won’t contribute much to the overall impression of what the problem could be. Be prepared to talk about what’s been happening, but you don’t need to treat it as if you were going to be cross-examined in a court of law, and have to give exact dates, times and specifics of every symptom.
Yes, you probably will be asked things like how long, and how often, but you don’t need to produce a log. Generalisations like: “Oh, about a fortnight” will be detailed enough. You just need enough to present a general picture - you won’t be asked to plot it on a graph or anything, so don’t get too bogged down in the detail. Writing up a diary every day, or even adding to it several times daily may be counter-productive, as it’s encouraging you to focus on what’s wrong all the time, instead of trying to have the best life you can in spite of it.
Tina
x
Thanks Tina thats helpful I will have Rob with me as he has to drive me to the hospital i am just worried that after being driven over 60 miles down country lanes I’ll be so shattered that I will end up with brain fog Rob is really good at prompting me.My symptoms have been so insidious I have had problems with right leg for 13 plus years and had been told to just ignore them adn as other things have occured I’ve been told “I don’t know why that is just get on with it, you should expect this don’t waste any more of my time” I had a fight to get taken seriously but at last I am referred to neurologist so lets hope he has answers. I know what yu mean about focusing too much on things I used to do things to distract my brain from my pain but I can’t do those as my sight is rubbish had eye op 3 weeks ago but it takes over 4 months for healing and they are not sure how much improvement I’ll get any will be great at least the flashing lights have gone. i hope to get back to weaving on my loom but know it will take me months to set it up I can’t wait to be creative again plan is to weave at least one blanket before christmas ( have to planned present ) Giong out with family as it’s fathers day weather sunshine and showers so it’s waterproofs and wellies yeh the great british summer enjoy your sunday Sue