Hiya
Today Im just doing a little diary of where Im at right now
I seem to be finally over the wedding last week , one day took me four days to recover from but was well worth it.
It did get me thinking though about how well people just dont know what us spoonies go through in order to have one day of joining in . I dont mean this as a moan I am so happy that I was part of it and think it was worth every bit of the pain and other symptoms that I had in the days after .
Most "well "people just enjoyed the day and then go on as normal the next day , perhaps with a little hangover , while I was pretty much bed ridden for the next 2 days , It taking four days to get over it.
Im not complaining or saying that people should stop and think , I know I never thought that some people may of been bed ridden just to be part of my big day , Its just a little thought I had about how clueless we are to each others lives.
The last couple of week or so I have had to keep hourly logs of my activity ,rest , sleep and pain for clinic I attend for people with Chronic Fatigue , Ive kept up with it for the most part and it was reviewed today showing me that I get far to little sleep but I was actually impressed at how much I do manage to do in a day.
Activities can be anything you yourself count as activity from washing , walking to being at your computer or watching tv depending on the person . We worked out that I do roughly 3 hours activities a day and so I have been sent a goal of doing three and a half hours daily and been given a new log to do that is every 15 mins to keep track of it.
This on its own sounds fine but I told the woman that I will do what I can aim for three and a half hours and keep a track of it , to that she replied " oh no your to do three and a half hours no matter how you feel or what your symptoms is telling you, thats the point , push yourself "
Now , firstly I heavily believe you should always listen to your body the improvement I have had in the last 6 months or so is buy doing exactly that . I do however understand that I must try to keep my body moving to help it but do it in a safe way not pushing past my personal base line.
When I got home I read that last week a trail was published that said that this graded exersize has in many cases made things worse for people and has a very low success rate... I also read up on people experinces with it and it wasnt posative ....This scares me , Im now worried about doing it or what could happen !
So
I had a think and yes Im going to continue to go and try ..However I am going to listen to my body... I know when I need to stop and I know that through this process the intention is to over time push that time to longer and longer ... I will only do what I feel is safe and If I feel to pushed or that my body reacts I will stop.... After all this has worked for some but not for many , I willing to try anything but will look after myself first ...so watch this space
Wednesday, 14 September 2016
Saturday, 10 September 2016
Special Occasions
Yesterday was my little sisters wedding and I was a Bridesmaid
It got me thinking of how sometimes there are events that we know will make us have a bad day/ week/month after but do it anyway because the joy it will give us is worth it .
Even the week up to it had made me rather ill, things like rehearsals ect had got me feeling ill so I had spent as much time in bed as possible on the lead up to her wedding because I knew it would make me ill but it was ssooo worth it
I spent the night before with her and took something to help me sleep so that I would be as well rested and prepared as possible , ate very healthy made sure I was hydrated and had all the medications I could need.
The day was amazing , My sister looked stunning and I watched proudly as She married the man she loves,
A fellow brides maid helped me to walk down the isle behind her , I sat down as much as possible but of coarse tired quickly and was in pain ,
I also had the pleasure of meeting a man who is a good friend of my sisters who also has ME/CFS it was so nice to talk to someone who knows how it feels we seem to suffer from it to a similar level He had traveled far to come to her wedding but it tired Him out , Hubby gave him a lift back to his hotel for the night .
Around 6pm I began to slur and was extremely achy so my Husband and I left once the cutting of the cake was done and we had watched them have the first dance.
In pain and very tired I went straight to bed and fell asleep , sleeping on and off for the rest of the night , However I did manage to fall over on the way to the toilet at Some point in the night.
Today of coarse I am not well .. at all bubbling body , numb head , pain slurring , dizzy , extreme fatigue ect
My point in telling you all of this is to say that for me anyway , there are times in life when I will put the joys in life first, If I had missed her Wedding I would f felt worse emotionally than I do do now physically ... I do not regret Going , If this is how I had to feel today to be a part of that fantastic day , Im more than happy to do it .
It got me thinking of how sometimes there are events that we know will make us have a bad day/ week/month after but do it anyway because the joy it will give us is worth it .
Even the week up to it had made me rather ill, things like rehearsals ect had got me feeling ill so I had spent as much time in bed as possible on the lead up to her wedding because I knew it would make me ill but it was ssooo worth it
I spent the night before with her and took something to help me sleep so that I would be as well rested and prepared as possible , ate very healthy made sure I was hydrated and had all the medications I could need.
The day was amazing , My sister looked stunning and I watched proudly as She married the man she loves,
A fellow brides maid helped me to walk down the isle behind her , I sat down as much as possible but of coarse tired quickly and was in pain ,
I also had the pleasure of meeting a man who is a good friend of my sisters who also has ME/CFS it was so nice to talk to someone who knows how it feels we seem to suffer from it to a similar level He had traveled far to come to her wedding but it tired Him out , Hubby gave him a lift back to his hotel for the night .
Around 6pm I began to slur and was extremely achy so my Husband and I left once the cutting of the cake was done and we had watched them have the first dance.
In pain and very tired I went straight to bed and fell asleep , sleeping on and off for the rest of the night , However I did manage to fall over on the way to the toilet at Some point in the night.
Today of coarse I am not well .. at all bubbling body , numb head , pain slurring , dizzy , extreme fatigue ect
My point in telling you all of this is to say that for me anyway , there are times in life when I will put the joys in life first, If I had missed her Wedding I would f felt worse emotionally than I do do now physically ... I do not regret Going , If this is how I had to feel today to be a part of that fantastic day , Im more than happy to do it .
Sunday, 4 September 2016
4.9.16
I was going to write a tip blog today but Im having a bad day with my me/cfs
I hope I can make sence
As Im sire you know with Me.cfs when you do something you often pay for it the next day.
Yesterday was my beautiful little sisters Hen party
It was a whole day thing and I knew I would not be able to do it all so i opted out of the day part and just went to the meal at a Mexican place with them all.
I knew this would be tiring for me and also my most prominent issue at the moment is food intolerance's , Im still trying to work out exactly wich foods trigger it , at the moment it seems everything that isnt a organic vegetables triggers awful pain bloating and bowl problems .
so I ordered the simplest things i could find , garlic mushroom started and fajita main with a fruit smoothie
The meal was great and we had alot of fun with party games , when the meal finished I went with them to a club a few doors down and stayed for one drink , By this time i was aching and very very tired ,, luckily I came home and actually slept well for the first time in weeks sleeping from around 2 am till 9am ( for me this is amazing )
I woke yup this morning feeling positive because of the amount of sleep ive had , but knew from experience to take it nice and slow so went to the living room to start my day but very slowly .
by 10,30 I felt it coming to bones started to ach more than normal , the sickness feeling was heavy I felt extremely sick , and have to go to the toilet ( if you know what I mean ) twice in the hour and a half I had been up
Non the less I took my meds and went on my laptop...then within a few hours... the pain really kicked in , my stomach was bbaaddd I felt dizzy and confused and oh so so sick, my eyes started to hurt because of the day light and got a head ache because of the everyday noises , meds where ding little to help
I went to bed ... I had to get hubby to put a think blanket up over the curtains to block out all light
I have eated a little fruit only to find myself with my head over a bucket im in pain , tingling and peeing alot , literally I have peep 6 times on 40 mins
However I would like to add that I would of done anything to be part on her hen night and do not regret it , Im so glad I went
Im not really to sure how to end this post , my aim in writing this post was not to moan or one of those aawee you how Ill I am posts , but i think it can be comforting to hear that its normal for people with me/csf
I remember well when I first got ill I searched for someone anyone who felt as I did and honest blogs and vlogs where so helpful to me ,, so I hope that someone anyone may find this at just the right time for them ........you are not alone
I hope I can make sence
As Im sire you know with Me.cfs when you do something you often pay for it the next day.
Yesterday was my beautiful little sisters Hen party
It was a whole day thing and I knew I would not be able to do it all so i opted out of the day part and just went to the meal at a Mexican place with them all.
I knew this would be tiring for me and also my most prominent issue at the moment is food intolerance's , Im still trying to work out exactly wich foods trigger it , at the moment it seems everything that isnt a organic vegetables triggers awful pain bloating and bowl problems .
so I ordered the simplest things i could find , garlic mushroom started and fajita main with a fruit smoothie
The meal was great and we had alot of fun with party games , when the meal finished I went with them to a club a few doors down and stayed for one drink , By this time i was aching and very very tired ,, luckily I came home and actually slept well for the first time in weeks sleeping from around 2 am till 9am ( for me this is amazing )
I woke yup this morning feeling positive because of the amount of sleep ive had , but knew from experience to take it nice and slow so went to the living room to start my day but very slowly .
by 10,30 I felt it coming to bones started to ach more than normal , the sickness feeling was heavy I felt extremely sick , and have to go to the toilet ( if you know what I mean ) twice in the hour and a half I had been up
Non the less I took my meds and went on my laptop...then within a few hours... the pain really kicked in , my stomach was bbaaddd I felt dizzy and confused and oh so so sick, my eyes started to hurt because of the day light and got a head ache because of the everyday noises , meds where ding little to help
I went to bed ... I had to get hubby to put a think blanket up over the curtains to block out all light
I have eated a little fruit only to find myself with my head over a bucket im in pain , tingling and peeing alot , literally I have peep 6 times on 40 mins
However I would like to add that I would of done anything to be part on her hen night and do not regret it , Im so glad I went
Im not really to sure how to end this post , my aim in writing this post was not to moan or one of those aawee you how Ill I am posts , but i think it can be comforting to hear that its normal for people with me/csf
I remember well when I first got ill I searched for someone anyone who felt as I did and honest blogs and vlogs where so helpful to me ,, so I hope that someone anyone may find this at just the right time for them ........you are not alone
Thursday, 1 September 2016
01.09.16
So I haven't blogged in a long time
I think because this Illness or rather the journey this illness has taken me on has been so up and down and learning has been tough that I really didn't know what to write.
Also Im not a writer , I am normally very confused , thinking is hard and things like grammar and words I find hard to find .
But Anyway its now about 6 months later in my journey and there is alot more to talk about both positive and negative and I feel that Im in a better place to give some support to others , perhaps have more knowledge of my ME/CFS.
Im going to write posts about where I am now , what I have learned so far and generally whats going on with my life ..Tips to help symptoms that I hope might help you ... we are all different but these are things that have helped me.
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