I had cause to write the following for a lovely young lady today and thought others may like to read it too. I know this can help. I have an online health diary myself and it tracks my ups and downs.
Just a little thought. Have you tried keeping a diary? If you can, give it a go as it helps in so many ways.
1. It focuses you on how you are doing.
2. Keep a track of food, activity, feelings [pain], emotions, weather and anything else.
3. You will be able to look back and see patterns which may help you avoid things, triggers etc.
4. You will also be able to see that things are not always black, there are likely to be good times too.
5. You will have a record to help you with your conversations with medical people, teaching staff etc.
6. You could use it to keep a track of how medications affect you and ensure you are keeping them up - FM fog can make you forget and cause you more difficulties [like me now]
7. You may be surprised.
8. You could use it to write your own book - you are very capable, we have all seen that.
9. Maybe your mum needs to read it? [Of course, no relationship details in this diary!]
It could be online if your prefer it to paper or find it easier, but then you may need to print it off for your doctor.
Two years ago I wrote 2 A4 pages out for my doctor which lead to my diagnosis so it did help for me and he has since asked me to do this again if I have more than a couple of complaints to discuss. The reason? We don't always know what is connected to our complaints and can miss out something which will mean we get the wrong help.
May also help with DLA or ESA claims!
Soft hugs everyone and a happier, healthier new year!
Written by
Sarah-Jane
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Please don't beat yourself up about it. I am an appalling diary keeper, but what if, whenever you felt able, you jotted down some notes? Try it just sometimes, maybe keep a note book by your bed for sleepless hours, or by your chair whilst your waiting for dinner to be ready - whenever. Then, flick back and see what I mean.
I have looked back at old diaries and found out how life had been then, which I had forgotten. As they were happy times they were a delight, but they are a boost to me on gloomy days. Looking back can be very helpful.
Just before Christmas our section held a Christmas Buffet where everone brings in something. It was just after this that I realised the difference in myself to the previous year. Then I had sat in my electric chair feeling the odd one out, unable to help set up, queue for more than minutes, nor walk further than a few feet before pain set in. I was also unable to help clear up. This year? I helped keep the students busy whilst the food was set up, queue for the food and enjoy it, clear up and felt part of the team. I had not realised I had come so far but this just showed me.
Also as I said, if you have a meeting coming up, make sure you do keep a diary or list all of your problems. Go from head to foot and list them all. Then go back to it and check it - you will be surprised what you missed out! Think what a diary could do to help support your case!
Give it a go, but if you don't do it for months, well, what does it matter? You are doing it for yourself - no one else.
I too have failed at diary keeping lots of times poor diarys start off so well then as the days progress and end up left for months untouched only for me to dip back in when I remember that it exists tucked into my bag or hiding at the back of a drawer.
For those of you who are better at this than me I also downloaded pain tracker/symptom tracker applications to my phone. Actually the only thing I have managed to consistently keep up with is a period tracker which means I'm always prepared for the first fateful day of it each month - so something good has come out of it x
I kind of do a daily diary. I write my day down on paper starting with the time I get to sleep to getting up and so on. Then I send it all to my son for safe keeping. It will also give him something to look back on in time, sharing my sadness and my woes and of course the funny times when things go wrong, as they do for us. But it is a great idea xxxxx
I read the comment before on my blog but it's taking me a lot of re reading and replying at the moment.
I can see all the points you have made and it might how help/ and others, get a better understanding of this horrid condition, break down the issues and find systematic ways to improve. From keeping diaries and blogging in the past (and now lol) I have always found it helpful.
I need to keep track of my symptoms because they are changing all the time and to ensure that I get the right help from others. Well I'm basically re wording most of what you said in the above - I guess what I'm trying to illustrate is that I think it's a great idea, the way forward. The positive news if I have done it before (improved my health and able to live normally, post diagnosis). For an amount of reasons it got a little bit worse again and that's why I found myself on here - and from that, met some great people. I've done it once so I should be able to do it again; I'll buy a new book and get some (gel!) pens - better to start from scratch.
Thank you for the suggestion about getting a publishcation - this is something I've always wanted to do and intend to do. I always have insightful detailed ideas (or I think I do at the time) and I want to help people. They say there's a book in all of us, it may sound crazy but in some ways I believe it's already there to an extent, I just have to bring to the physical world (and then some!).
Thank you for your other comments to, I really appreciate them. I was in a bad place when composing my blog and me and my Mum are good friends really, I just believe there is something a wall between us from the unresolved secondary school issue, and sometimes it comes back into my mind after we've had disagreements/discussions etc. In hindsight I feel bad for bringing it back up again, and I just want to say I'm sorry if I caused any offense.
I'll read through your comments again, and other peoples' and work out the best way forward taking everything said into account.
Feel a bit better, bit feel a bit not quite right still. I think my mood and my symptoms were also ampilified because I the cold I has was particularly bad. I had a few lates nights before hand celebrating Christmas and New Year (I just really didn't want to miss out - albeit I ended up bringing my hands to my ears when the fireworks started). Hopefully this will be the time things begin to improve.
I have managed to keep going with school, and enjoyed the simplicity of chatting to people which is always a good sign.
Thank you very much for your reply. It is okay and understandable, but I hope you can see that feelings change, symptoms change too so never give in, okay? Try and find a positive every time you feel down. Thats easy to say, harder to do, so if you can't, just hang on, nothing lasts forever.
Yes I can see feelings change - which is why I never lose hope - it's just how I feel in the moment and one my traits is that I tend to live in the moment - good or bad.
I always try and be a positive as I can, I enjoy the simple pleasures out of my day, talking to friends, having giggles, learning something new in class.
Just read back your comment - you give some really good advice thank you. There are many treatments out there that I'm still yet to try! Can I just mention that there was nothing wrong with your first comment on my blog. I fully understand the drawbacks to living with this condition and it affecting the way we communicate. You were very helpful.
Thank you everyone for your replies. I have found that a five year diary without dates is good as you can just put the date and keep going. Its fun actually using one of those as you only use the top section on every page, so when you come around again you can do a direct comparison and see if there are any changes!
Right now I am delicately walking on eggshells saying it, but my pain is so minimal I am walking with no limp! Its still there, but like a 'normal' twinge at times. Yes still taking meds - forgot the other day and the pains started to return and were sharper. So fingers crossed this keeps going for a bit though my hands are twinging.
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- I guess what I'm trying to illustrate is that I think it's a great idea, the way forward. 
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