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Q? Do you keep a medical or health daily journal?
Q? Do you, keep a medical / health daily journal?
I know, it's suggested, so that you can record your daily symptoms, therefore you have an idea on how long they may persist, etc. That way, should you have a recurring symptom, you can look back and note it's frequency. etc.
After my accident, back in July 2009, due to my accident, I was encouraged to keep a daily journal, but I didn't keep it up. I don't keep journal, stating when symptoms occur, etc.
Is this something, I should be doing? Do you?
-- Socrates2k1
I know, it's suggested, so that you can record your daily symptoms, therefore you have an idea on how long they may persist, etc. That way, should you have a recurring symptom, you can look back and note it's frequency. etc.
After my accident, back in July 2009, due to my accident, I was encouraged to keep a daily journal, but I didn't keep it up. I don't keep journal, stating when symptoms occur, etc.
Is this something, I should be doing? Do you?
-- Socrates2k1
I kept a log of symptoms during my diagnostic journey. Once I was admitted to the club I stopped.
Kyle
Kyle
I started journaling my symptoms because ....I have been dx with Probable MS....I see an MS specialist...I have lesions ONLY in the brain stem. My MS doc can't put definate MS "yet". I will be starting Copaxane soon.
I say all that, to say IF you are still in the waiting-to-be-diagnosed catagory, I personally think it is a good idea to keep a daily log of "symptoms" good days and bad....then when you go to an appointment you can go back and condense symptoms, how long they lasted ect....
I agree...all the docs I have seen would NEVER look at my "lists/notes....but writing them down for ME to look at helped a lot!
IF I was definately dx I would NOT be journaling...I hate to have to think about every-little-thing! :)
Laurie :)
I say all that, to say IF you are still in the waiting-to-be-diagnosed catagory, I personally think it is a good idea to keep a daily log of "symptoms" good days and bad....then when you go to an appointment you can go back and condense symptoms, how long they lasted ect....
I agree...all the docs I have seen would NEVER look at my "lists/notes....but writing them down for ME to look at helped a lot!
IF I was definately dx I would NOT be journaling...I hate to have to think about every-little-thing! :)
Laurie :)
Hi Cherise - Welcome to our little world.
I just thought you should know that this thread is over a year and a half old. Some of the poster may no longer be around.
It's a good topic to revisit so hopefully others will chime in.
Kyle
I just thought you should know that this thread is over a year and a half old. Some of the poster may no longer be around.
It's a good topic to revisit so hopefully others will chime in.
Kyle
I have Multiple Sclerosis. I am 32. I have lots of pain/fatigue/ weakness. So everyday if different for me. So I do keep a journal of my medical conditions. And I use the Smart Diary Suite. First kept the diary only for the doctors. But in the end it helps with memory and well as keeps all the appointments straight. lol I love this smart diary because it even has a display of a person, and I can put what area is bugging me as well as how...ex. numbing/pain. The ms clinic loves it because it will also show a graph on how you have been doing from your daily logs. Like everything you need to remember, its on there. And because everything is so organized, its easier to show the doctors exactly what your talking about. Even with a bad memory--you can set reminders so that you can keep it up to date.
This truly helps, seeing the data in front of you...makes you see your medical life in a different way. Trust me once you give it a try, you will love it.
I hope I help,
Cherise Johnston
This truly helps, seeing the data in front of you...makes you see your medical life in a different way. Trust me once you give it a try, you will love it.
I hope I help,
Cherise Johnston
Hi there,
I think journal keeping is an individual thing, but for those of us in limbo land or still going through the diagnostic stage it can be very useful and for those diagnosed it can also have it's advantages.
I don't write in mine every day, infact I might go months without even an entry, but I have used it for several things, like Jemma I tried to track my migraines and see if certain things were triggering them. I also tried to note if my symptoms were bad if it was extra hot or I had over done things.
I am lucky as although I have not taken my journal to my neurologist I have always taken to both my old and my new neurologist a list of symptoms, questions etc. and my journal has helped me compile my "shorter version" , although my current neuro is getting used to my novels, he does always read them and answer my questions.
I had a symptom happen recently that I thought was "NEW", but when I looked back in my old diary I had this problem in the past, but had forgotten about it. I just write when I start medicine, when I have had a certain test done and when I visit a Dr, so for me at least I can see the whole picture. I prob keep better records than they do. I started writing things in my diary to tell my Dr for my next visit, this is how it all began.
I reckon each to their own.
Cheers,
Udkas.
I think journal keeping is an individual thing, but for those of us in limbo land or still going through the diagnostic stage it can be very useful and for those diagnosed it can also have it's advantages.
I don't write in mine every day, infact I might go months without even an entry, but I have used it for several things, like Jemma I tried to track my migraines and see if certain things were triggering them. I also tried to note if my symptoms were bad if it was extra hot or I had over done things.
I am lucky as although I have not taken my journal to my neurologist I have always taken to both my old and my new neurologist a list of symptoms, questions etc. and my journal has helped me compile my "shorter version" , although my current neuro is getting used to my novels, he does always read them and answer my questions.
I had a symptom happen recently that I thought was "NEW", but when I looked back in my old diary I had this problem in the past, but had forgotten about it. I just write when I start medicine, when I have had a certain test done and when I visit a Dr, so for me at least I can see the whole picture. I prob keep better records than they do. I started writing things in my diary to tell my Dr for my next visit, this is how it all began.
I reckon each to their own.
Cheers,
Udkas.
I keep a time line journal only because I think it is important while you're without a diagnosis. As far the negative connotation, sure, it looks like a mess after you read it, but I do it because I want to ensure I am diagnosed with the "right" diagnosis. I dont even know if the MS Specialist or whoever else I will see in the near future would even bother looking at the less than one page time line at all.
I wrote down I had diplopia last night in both eyes, right definitely worse than the left. Why? Because it's abnormal and I think it would be important to mention to the doctor. Dont you? :/
I haven't been doing this for "years" so it is not wreaking havoc on my positive outlook on things. Doesn't take much of my time either.
So, to me its individualized. To each his/her own.
Lisa
I wrote down I had diplopia last night in both eyes, right definitely worse than the left. Why? Because it's abnormal and I think it would be important to mention to the doctor. Dont you? :/
I haven't been doing this for "years" so it is not wreaking havoc on my positive outlook on things. Doesn't take much of my time either.
So, to me its individualized. To each his/her own.
Lisa
COMMUNITY LEADER
You and Addi give perfect examples, which are proactive and provide you with personal benefits for doing a journal. Understanding and finding patterns are both great reasons for doing a journal but I think the 'why am I doing a journal' is often missing from the concept of journaling, which was the point i was trying to make.
Today I wouldn't find listing sx as beneficial, i frankly dont want to write it down anymore, i'm adding to what i think is an already long enough list. Each relapse takes a little of me and leaves a reminder that this is not ever going to go away. I dont even know if i'm doing it right, maybe what would be more beneficial is writing about a sx, as in descriptive explanations instead of just a gradually lengthening list.
eg. sx double vision (tick): today my husbands face was so strange when he leaned in close for a kiss, it distorted as he moved towards me, too many mouths, too many eyes i wanted to close my eyes so I didn't have to see him look this way but i knew i couldn't because I'd just fall again. So I looked at this stange creature and received his kiss so he didn't feel hurt and rejected again.
Ahhh nope I can't see that as being beneficial, maybe if the explanation was based on the positives of it.
eg. sx double vision (tick): Today i didn't feel as startled by the strangeness of my husbands face, the flinch was hardly noticable so i think i might be getting use to his distorted features when he gets too close.
Each to their own is right, so if it works for you all the better but if it doesn't then i still think you need to consider what you get out it. Again if there is a benefit go for it but if there isn't, then just know that it can potentially do more harm to your headspace than good.
Just my humble opinion....................JJ
Today I wouldn't find listing sx as beneficial, i frankly dont want to write it down anymore, i'm adding to what i think is an already long enough list. Each relapse takes a little of me and leaves a reminder that this is not ever going to go away. I dont even know if i'm doing it right, maybe what would be more beneficial is writing about a sx, as in descriptive explanations instead of just a gradually lengthening list.
eg. sx double vision (tick): today my husbands face was so strange when he leaned in close for a kiss, it distorted as he moved towards me, too many mouths, too many eyes i wanted to close my eyes so I didn't have to see him look this way but i knew i couldn't because I'd just fall again. So I looked at this stange creature and received his kiss so he didn't feel hurt and rejected again.
Ahhh nope I can't see that as being beneficial, maybe if the explanation was based on the positives of it.
eg. sx double vision (tick): Today i didn't feel as startled by the strangeness of my husbands face, the flinch was hardly noticable so i think i might be getting use to his distorted features when he gets too close.
Each to their own is right, so if it works for you all the better but if it doesn't then i still think you need to consider what you get out it. Again if there is a benefit go for it but if there isn't, then just know that it can potentially do more harm to your headspace than good.
Just my humble opinion....................JJ
I guess, I began my "adventure", a little different, than most.
My accident, back in 2009, having a traumatic head and neck injury (also severe chest contusion and dislocated left thumb), caused a whole lot of additional symptoms, for me to deal with. Whether or not MS, had any contributing factor, in my fall, will never be known.
Anyways, I was seen by a Physical Therapist, Occupational Therapist, and Speech Therapist (not to mention an RN), for about 6 months. It was the Speech Therapist's idea to start a daily journal, but one of the main requirements, was to make sure and note, at least one "good thing", each day. It took me about a year to recover, just from my accident, but by then, I was also diagnosed with MS. I was told, I probably had earlier symptoms of MS, and didn't actually know, why they were occurring.
Two possible, helpful uses, for a daily journal could be:
One, for those with RRMS, it can help them to understand, their symptom progression, and how often they have "flair ups". For their own personal knowledge, if nothing else.
Two, more importantly, just a daily way, to say a few things about how you feel, what's going on, what you did, etc., but also (as my Speech Therapist recommended) always make sure, you write, at least, one "good thing", that occurred or you did, that you feel was a "good experience".
I guess the second reason, would be, what we use to call, a "daily diary", huh.
I do agree, one of the reasons, I stopped "journaling" myself, was for that very "negative reason", I kept noting all the bad things that were happening, all the symptoms I was having, etc. When I went back, and re-read them, I thought about how it all seemed so negative, so I stopped.
However, when I have, "harsh" or "extreme" symptoms, like severe tremors (coupled w/ hyperventilation, and uncontrollable emotions), or when I suddenly am unable to move (any part of my body, except my eyes) for a short time (30 minutes to 2 hours). It would be helpful, for my own sake, to note how often they occur, what were the circumstances, etc.
After all, if they occur, given known conditions, maybe you can help prevent them, maybe.
For example, I have a difficult time getting enough sleep, I usually average about 6 to 6-1/2 hours per day, but there are days, where I barely sleep, at all (I might sneak in 2 hours of intermittent sleep). Usually, after I decide to get up (because why lay there trying to sleep, when you aren't, and you could be doing something productive), I will have one of these two "harsh" symptoms occur, within 24 hours.
Also, extreme temperatures (cold or hot), will cause my MS Hug and fatigue level to rise, significantly.
However, by not journaling, I have no idea, the frequency of occurance.
So, I can see reasons for journaling, and reasons for not.
-- Socrates2k1
My accident, back in 2009, having a traumatic head and neck injury (also severe chest contusion and dislocated left thumb), caused a whole lot of additional symptoms, for me to deal with. Whether or not MS, had any contributing factor, in my fall, will never be known.
Anyways, I was seen by a Physical Therapist, Occupational Therapist, and Speech Therapist (not to mention an RN), for about 6 months. It was the Speech Therapist's idea to start a daily journal, but one of the main requirements, was to make sure and note, at least one "good thing", each day. It took me about a year to recover, just from my accident, but by then, I was also diagnosed with MS. I was told, I probably had earlier symptoms of MS, and didn't actually know, why they were occurring.
Two possible, helpful uses, for a daily journal could be:
One, for those with RRMS, it can help them to understand, their symptom progression, and how often they have "flair ups". For their own personal knowledge, if nothing else.
Two, more importantly, just a daily way, to say a few things about how you feel, what's going on, what you did, etc., but also (as my Speech Therapist recommended) always make sure, you write, at least, one "good thing", that occurred or you did, that you feel was a "good experience".
I guess the second reason, would be, what we use to call, a "daily diary", huh.
I do agree, one of the reasons, I stopped "journaling" myself, was for that very "negative reason", I kept noting all the bad things that were happening, all the symptoms I was having, etc. When I went back, and re-read them, I thought about how it all seemed so negative, so I stopped.
However, when I have, "harsh" or "extreme" symptoms, like severe tremors (coupled w/ hyperventilation, and uncontrollable emotions), or when I suddenly am unable to move (any part of my body, except my eyes) for a short time (30 minutes to 2 hours). It would be helpful, for my own sake, to note how often they occur, what were the circumstances, etc.
After all, if they occur, given known conditions, maybe you can help prevent them, maybe.
For example, I have a difficult time getting enough sleep, I usually average about 6 to 6-1/2 hours per day, but there are days, where I barely sleep, at all (I might sneak in 2 hours of intermittent sleep). Usually, after I decide to get up (because why lay there trying to sleep, when you aren't, and you could be doing something productive), I will have one of these two "harsh" symptoms occur, within 24 hours.
Also, extreme temperatures (cold or hot), will cause my MS Hug and fatigue level to rise, significantly.
However, by not journaling, I have no idea, the frequency of occurance.
So, I can see reasons for journaling, and reasons for not.
-- Socrates2k1
I can see both sides. And who knows, I may actually change my mind on the journaling and/or trackers once I am dx'ed. Who knows?
When I first learned about making a timeline, I did it because of how many people on here said how helpful it is to have. It was a bit frustrating to make because I couldn't remember a lot of the things from a couple years back. I had to go by medical records, family member memories and the few writings I had made way back in the beginning, including a letter to Montel Williams that I never sent! lol
Anyways, when I had the completed timeline, it was quite a shock to me to see it all in order. It absolutely confirmed to me that I wasn't crazy. I saw patterns in it...flares. It was quite an eye opener to me. And it put more of a fire under my butt to get answers.
I think continuing on with the tracker now stays important to me because of the timeline experience I had. And my desire for answers.
Since I still remain undx'ed at this time, I cannot really say how I will feel about it when i do get diagnosed. It may turn out to be a downer for me, as well. Or, I may find that it still helps me.
So, I agree, different strokes and all that. And, if you find that journaling and/or trackers pulls you down, dx'ed or not, then it may not be the right thing for you to be doing. Being in the right headspace is something we all need to be in.
Hugs to all,
Addi
For some people, a daily journal or note or two is a good idea, especially for limbolanders. It's really a big help in making a timeline. Those with memory problems might try this approach too.
For me personally it would be a downer. I don't want to see a litany of my aches and pains, and on my good days, like today YAY! I already know it. Having lived with MS for several years now, I know what works for me. Different strokes and all that.
ess
For me personally it would be a downer. I don't want to see a litany of my aches and pains, and on my good days, like today YAY! I already know it. Having lived with MS for several years now, I know what works for me. Different strokes and all that.
ess
I cannot speak for anyone else but myself regarding journaling or using trackers and such. I made a timeline, too. My timeline covers from my very first symptoms six years ago up to my last flare. I have not added to that, i just do my tracker list since then.
I keep copies of my timeline in my book of medical records for any new doctors I see. I have yet to have a doctor not take the timeline and look it over and discuss it with me...and keep a copy of it for my file. I also give them a copy of all meds I am on and a list of all of my doctors. I get compliments on my record keeping and thoroughness. Both my neuro and my pain management doctors have even said to me that they wished more of their patients kept records like me.
As far as keeping track of my daily happenings by way of a tracker, I don't find this negatively crowding my headspace at all. It takes me all of about 5 minutes a day before I go to sleep at night to fill in my tracker. While I am going down a list, marking any symptoms i am experiencing, I also have a note section to be able to make remarks. It is this area that i can write positive things from my day, too. Journaling, for any reason, has always been promoted as a positive way of expression by counselors anywhere, too.
I find that, for me, the tracker benefits me a great deal. If I hadn't been doing my tracker I would not be able to tell any doctor how long I have been having tremors, for instance, if I were asked. My memory plays such havoc with me that I find the trackers benefiting me and enabling me to keep a better proactive role in my health care.
Still being undx'ed, I feel that journaling and/or trackers help a great deal. I am not looking for an MS dx, I am looking for an accurate dx for me. So, I may not find a specific symptom of any importance, while a doctor may find that same symptom very important. Maybe, just maybe my doing a timeline and the trackers will aid a doctor in making a quicker determination with what is going on with my body.
Anyways, that is my interpretation of the use of journaling and trackers. Even after I get a diagnosis, I will still use my tracker. I want to be able to look back and monitor my health and/or a specific symptom.
My focus right now is to find out why my body is betraying me. I want answers. I want and need treatment as soon as possible, especially if it could reverse some of my symptoms....or stop any new ones from cropping up. Too be quite honest, my headspace was discombobulated and in a sort of lost state until I made my timeline and started to use trackers. Between that and this forum, I have learned which direction in the road to follow for my healthcare. I am grateful for all of it. :)
I feel like I am a positive person. And I always look for the positive things...whether in regard to my health or anything in life. Laughter is great medicine and I take extra doses of that any time I can. It is really hard for me not to think about what I am losing when I have reminders of it all around me. I sleep in a hospital bed with a trapeze attached to it. I have two wheelchairs, a scooter, and a walker in my room. My bathroom is also completely converted for me. Yet with all of these things in my face, I still stay mainly positive and try to focus on the good things. There are my family pictures all over my walls of my children growing up, now intermingled with pictures of their children...my grandchildren. There is my fish tank with beautiful fish that is relaxing to have in view. Plus many other things, too.
Hugs,
Addi
COMMUNITY LEADER
I was doing a journal but stopped after the neuro all but tossed it at me, for the second neuro i did a time line instead and he only turned it over when i handed it to him, can't say he even read one word of it. I dont actually totally understand the importance of doing it, it makes sense for your neuro to understand you but what benefit is it to you, from my experience it was hardly worth the effort of pressing the print button lol
Personally i try and focus on anything but sx's, I think there is a huge possibility that it can negatively affect your headspace. I know whats what but i dont want to focus on it unless I absolutely have too, even when i'm in a bad relapse i'm trying to look for the positive. I sort of dont want to acknowledge the things that add on to what i've already had to acknowledge, seriously what good does it do us to never get away from what we are loosing? Which is what i see the diary/jounal as doing, and imho the focus is only on the negative and that can't be good for your headspace.
So i think you need to ask your self why its necessary to do in the first place, if there really is a need then do it but if there's nothing in it for you but the possibility of your focus being on what your loosing, then dont!
Cheers.......JJ
Personally i try and focus on anything but sx's, I think there is a huge possibility that it can negatively affect your headspace. I know whats what but i dont want to focus on it unless I absolutely have too, even when i'm in a bad relapse i'm trying to look for the positive. I sort of dont want to acknowledge the things that add on to what i've already had to acknowledge, seriously what good does it do us to never get away from what we are loosing? Which is what i see the diary/jounal as doing, and imho the focus is only on the negative and that can't be good for your headspace.
So i think you need to ask your self why its necessary to do in the first place, if there really is a need then do it but if there's nothing in it for you but the possibility of your focus being on what your loosing, then dont!
Cheers.......JJ
Socrates-
I am using Excel. I have made the tracker already on my desktop computer. Now I am trying to figure out how to use it on my iPad. I can send the tracker to my iPad but it changes dramatically in the process. So I still have some figuring out to do with it. Originally I bought my iPad for a couple reasons. One of the main reasons was my wanting to have all of my medical records in it. The other reason was the weight of the iPad...much easier to use and hold. Also, for e-books.
To be honest, I kind of put this project on hold due to severe pain issues. When I get the pain/spasms under control then I will continue with my project.
The one I made on my desktop is a pretty basic one. All my symptoms are listed down the first row. I made enough columns for each day of the month. Then for each day, I go down the list of symptoms and place an x in the appropriate boxes. If I have a new symptom that isn't on my list, I can just add it down at the bottom of the first row.
So, my tracker is by the month. I can print out the month when it is complete or just save it to my drive. Then start a new month.
Pretty basic but does the job. :)
Hugs,
Addi
Addi, wow, now that's taking the initiative. I was going to say, why aren't you using MS Word or MS Excel, for a journal, no writing, but lots of typing. Let me know about your tracker creation, please.
-- Socrates2k1
-- Socrates2k1
I tried doing a daily journal but failed miserably with it. I have trouble with cramping in my hand when I write. When I joined this forum, I ran into the trackers. Now those I find beneficial and much easier to complete on a daily basis. I like having the option of making them only viewed by myself, too. And you can always leave a journal entry if you want to add more than they allow you to.
I am working on building my own tracker so that I can combine a few of the ones available through medhelp and also so that I can access my own tracker without requiring an Internet connection to do so.
Addi
I do, have been for early a year, but I might as well just put "same old yuck" every day. The only days worthy of comment are the few GOOD days i feel, about once a fortnight. And sometimes two in a row!!!!!!!! Before I was writing when i felt like c r a p, but that is now normal, so writing when I feel good seems to be the only thing worthy of mention.
The bit I DID want to notice was when my migraines occur - if there is/was a pattern. There is sometimes, but others just seem out of the blue.
The bit I DID want to notice was when my migraines occur - if there is/was a pattern. There is sometimes, but others just seem out of the blue.
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