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.
Wednesday, 2 March 2016
12 Step Help
As you know Im in recovery from alcoholism as well and haven't drank in over 10 years , I Owe most of that fact to being in a well known 12 step fellowship
So when I couldn't take it anymore it came to me that there must be a 12 step fellowship to help me with the emotional side , help me to learn how to cope on a day to day basis
I got on the internet and did some searching , found a book and read the perview , it talked about although i cant help what m body is doing I have a soul and a spirit and i can dpo any things to have a happy life on the inside, i loved this and it gave me a feeling of hope
I then found a 12 step online meeting for people living with chronic pain , i attended the online meeting and instantly found that i felt i was with people who knew what i fewas going through
Ive been to another meeting since and listening to what they say , doing the things ive heard the say helped them and though Im not completely cured inside I do feel alot better
obviously Ive only been to 2 meetings so I cant say oh yes it works but I do think anything is worth a go to try to gain a life thats not all about pain and illness
my experience with 12 step fellowships is it works if you work it and the program has saved my life before with the drink so why couldn't it help me with this
Ile keep you posted but I will say what works for one may not work for another but its always worth trying anything
So when I couldn't take it anymore it came to me that there must be a 12 step fellowship to help me with the emotional side , help me to learn how to cope on a day to day basis
I got on the internet and did some searching , found a book and read the perview , it talked about although i cant help what m body is doing I have a soul and a spirit and i can dpo any things to have a happy life on the inside, i loved this and it gave me a feeling of hope
I then found a 12 step online meeting for people living with chronic pain , i attended the online meeting and instantly found that i felt i was with people who knew what i fewas going through
Ive been to another meeting since and listening to what they say , doing the things ive heard the say helped them and though Im not completely cured inside I do feel alot better
obviously Ive only been to 2 meetings so I cant say oh yes it works but I do think anything is worth a go to try to gain a life thats not all about pain and illness
my experience with 12 step fellowships is it works if you work it and the program has saved my life before with the drink so why couldn't it help me with this
Ile keep you posted but I will say what works for one may not work for another but its always worth trying anything
Tuesday, 23 February 2016
Relapse
As you know im rather new to this ME/CFS stuff and im still learning still un diagnosed
Ive been in a bad patch for at least two weeks now and went to the doctors yesterday as this is the longest patch ive had of being so unwell with so many symptoms being so prominent.
She was great and explained that I am having a relapse
I didnt even know there was such a thing , I know I have patches of good and patches of bad , bad patches normally being a few days long followed by a day or even a few better days
I spent yesterday in bed just trying to rest, then this morning feeling slightly better but still very unwell I searched on the internet to find out more about relapse and found out that yes they do happen and are different to just a bad few days .
This somehow comforted me , I read tips and how others deal with relapse , it looks like above all I just have to rest up
I read a woman's story, what stood out for me was how she would have to talk to herself about how sleeping isnt giving in, its doing it to heal her body and mind.
Im a great one for saying things such as Im fighting the fight , I like to see myself as a fighter and will fight this with all that I have , I do not give in or give up....reading this story seemed to finally im print it in my mind that sleeping is fighting , Im not fighting this when I try to power through the symptoms or doing just one more household job when i know Ive hit my limit or seeing a friend when I should be resting ..thats all the wrong kind of fight , when I feel it coming if I just put myself to bed for a hour often I will wake up feeling a bit better and also I think by doing this I will save myself from having to spend days on end in bed because Ive pushed myself to far.
One other thing that got me thinking is the woman spoke about days with no symptoms, Again I wasn't really aware that this was possible , I know we are all different and some people are iller than others but I must say in the 18 months Ive been unwell I dont think ive had more than 1 or 2 days like that...Im not going to make it a goal to have days symptom free but I need to pay more attention to my symptoms and fight them in the best way I can.....Rest !
Ive been in a bad patch for at least two weeks now and went to the doctors yesterday as this is the longest patch ive had of being so unwell with so many symptoms being so prominent.
She was great and explained that I am having a relapse
I didnt even know there was such a thing , I know I have patches of good and patches of bad , bad patches normally being a few days long followed by a day or even a few better days
I spent yesterday in bed just trying to rest, then this morning feeling slightly better but still very unwell I searched on the internet to find out more about relapse and found out that yes they do happen and are different to just a bad few days .
This somehow comforted me , I read tips and how others deal with relapse , it looks like above all I just have to rest up
I read a woman's story, what stood out for me was how she would have to talk to herself about how sleeping isnt giving in, its doing it to heal her body and mind.
Im a great one for saying things such as Im fighting the fight , I like to see myself as a fighter and will fight this with all that I have , I do not give in or give up....reading this story seemed to finally im print it in my mind that sleeping is fighting , Im not fighting this when I try to power through the symptoms or doing just one more household job when i know Ive hit my limit or seeing a friend when I should be resting ..thats all the wrong kind of fight , when I feel it coming if I just put myself to bed for a hour often I will wake up feeling a bit better and also I think by doing this I will save myself from having to spend days on end in bed because Ive pushed myself to far.
One other thing that got me thinking is the woman spoke about days with no symptoms, Again I wasn't really aware that this was possible , I know we are all different and some people are iller than others but I must say in the 18 months Ive been unwell I dont think ive had more than 1 or 2 days like that...Im not going to make it a goal to have days symptom free but I need to pay more attention to my symptoms and fight them in the best way I can.....Rest !
Sunday, 21 February 2016
Paying for Yesterday
Yesterday was lovely my little sister and a group of us went shopping for her wedding dress , i was a nice morning and she found a dress she wanted and wow did she look stunning in it , I wouldn't of missed it for the world
I was picked up at 9, 30 am , dress shopping then she asked if we would all go for lunch with her so we did , around 1.30 i could feel it coming but i enjoyed the lunch and didn't say anything about feeling unwell at 2.30 i politely said that i would go now as i was getting tired... Stupidly i refused the offer of a lift home deciding to tr and do any exercise i could i walked home from the restaurant stopping in a shop to get some essentials getting home around 3 O clock.
On that walk home i knew i had pushed it each step heaver than the one before , the ache was taking over one muscle at a time
when i got home i knew relaxing was the only thing that could save me so for the rest of the day i was in bed with hubby watching DVDs and fell asleep early
This Morning
I woke at a good time of 8am glad to of had a good nights sleep for a change , For the first 30 mins i felt ok and thought i ma just have a good day
The phantom cough started ( i have days i cough as if i have a cold but i dont have one) the over whelming feeling of sickness came to the point i got out a bucket just in case , but haven't had to use it thank god, the sharp pains and dull aches and head ache followed, muzzy head and dizziness then added its penny's worth and here i am on the sofa with pillows and a blanket waiting to the pills to help me a little
I writing this not to moan about i feel today but to remind myself not to over do it , the problem i have that many do is i never know how much is to much till its to late and as i have read there is a need to exercise not to mention the weight ive put on i was trying to do the write thing in some little exercise hopefully i will learn more and let you know but for know i must lay down
I was picked up at 9, 30 am , dress shopping then she asked if we would all go for lunch with her so we did , around 1.30 i could feel it coming but i enjoyed the lunch and didn't say anything about feeling unwell at 2.30 i politely said that i would go now as i was getting tired... Stupidly i refused the offer of a lift home deciding to tr and do any exercise i could i walked home from the restaurant stopping in a shop to get some essentials getting home around 3 O clock.
On that walk home i knew i had pushed it each step heaver than the one before , the ache was taking over one muscle at a time
when i got home i knew relaxing was the only thing that could save me so for the rest of the day i was in bed with hubby watching DVDs and fell asleep early
This Morning
I woke at a good time of 8am glad to of had a good nights sleep for a change , For the first 30 mins i felt ok and thought i ma just have a good day
The phantom cough started ( i have days i cough as if i have a cold but i dont have one) the over whelming feeling of sickness came to the point i got out a bucket just in case , but haven't had to use it thank god, the sharp pains and dull aches and head ache followed, muzzy head and dizziness then added its penny's worth and here i am on the sofa with pillows and a blanket waiting to the pills to help me a little
I writing this not to moan about i feel today but to remind myself not to over do it , the problem i have that many do is i never know how much is to much till its to late and as i have read there is a need to exercise not to mention the weight ive put on i was trying to do the write thing in some little exercise hopefully i will learn more and let you know but for know i must lay down
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