14.9.16 Graded Exsersize ?

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

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 .

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

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.

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

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 !

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

Depression ?????

( This my experience only , experiences vary widely and what works for one may not work for another )

When I first got Ill , in fact for a long time I was going to my doctors with various symptoms only to be told its in m head or am I depressed?? , do i need to speak to someone??

Infact it has become a subject that angers me

I changed my doctors to get away from it and it was the best decision i have made so  far in my ME/CFS journey , when i changed doctors i made a appointment with a doctors and said this is what is going on , it is not in my head its not stress or depression and i need you to help me
Thank god i have not been asked that question since, I was put on anti depressants for a while but to help with the symptoms not my state of mind unfortunately the did nothing for my health and i was taken off them
I got a Letter from a specialist that i will be going to see soon and in it was a questionnaire , I was disheartened to see that most of the questions relate to depression , Looking through this made me think about my state of mind now... Am I now depressed??

whilst just before I got Ill I was highly stressed by my job. I had become anxious about going to work . The job was very stressful and there wasn't really any time off even at home I was at work.
However I was getting married it was the summer I had a well payed job , Life all in all was good

There was alot of stress as I was getting ill, family issues had me on edge and i was becoming increasingly unwell, Over time I took what control I could and cut out the stresses of life , I had to leave my job and cut contact with people who caused stress .
 Life got better but my health did not
Now other than health my life is good , No real stress or big problems yet now I would say im lower than I have been in years
The answer I think is simple though I had a lot on m plate I was blessed with a good outlook on life , I could see the bigger picture and I was happy in life, life has its stresses after all, yes I was getting ill but surely it will pass
18 months later im worse in health than ever , im sick and tired of being sick and tired, It been some time since I had a  day and felt ok, what I count as a good day now isnt what a good day was a year ago Im bored , I ache I feel sick , cant concentrate on anything at all  and I just feel Ill,
So yes I am low , who wouldn't be , Any human being would not want to live this life , Some would say this is depression
Myself I think I am low because of my circumstances , I was not Depressed when I got Ill and Im not convinced I am depressed now , I currently have very little life or fight in me but I know myself well enough to know the fight will come back and I want help with my illness not constant questioning on my state of mind..... please
You know your state of mind be true to what you know and dont allow anyone to tell you its in your head or because your depressed , march on and make sure you get the help you deserve .

My M.E Birthday

Today is m 29th birthday
It isn't my first birthday whilst ive been ill but I am far worse this birthday health wise than I was last year
We didn't have big plans we normally go out and do my birthday/valentines day in one as they are the same day . Meal with a singer all dressed up , But this year as we are both unwell we decided a good cuddle up on the sofa and dvds at home with a take away would be just fine , I was looking forward to it as much as I would if we where dressing up to the nines and going out.

Ever heard the saying ," Tell god your plans and he laughs" ? ...Well today was just that

The first part of the day wasn't to bad hubby made be breakfast in bed , that I pretended to eat lol,  Birthday gifts , My sister turned up late to get me but I dont mind that we went to mums for lunch . It was very enjoyable but very tiring for me , by the end I needed my bed.

When I got home poor hubby was a shade of grey laying in His bed , He explained to me that he had attempted to play golf with a friend and promptly passed out/ collapsed and was bought home by a mate . Because of this I helped him out making him a cup of tea ect but I could feel the headache , leg ache/ heaviness and overbearing Fatigue  taking over me,
 In a bid to pull through I had a bath but it was no use M.E was taking over from the bath i waddled like a duck, shaking and guiding my self by holding on to walls hoping not to fall.
I made my self as comfortable as I could On the sofa and snuggled down with my dog . It got no better extreme nausea came along with a headache and dizzyness to follow , so my snuggle up with hubby on my birthday turned into us in different rooms both under duvets feeling very unwell.
The one lesson I find hard to learn is that I can no longer have plans, everything no matter how small depends on how I feel. For a short while I was feeling sorry for myself for feeling so unwell on my birthday but I reminded myself a birthday is just like any other day, Im lucky I was able to get out of the house a spend a little time with family and Im lucky that the extreme  pain I was in last night isnt back today.

I think I better think it out Again

I was talking today with a friend about Values and what people see as success
my friend very wisely pointed out that success inst about money cars or high powered jobs and I very much agree with her
This conversation lead to me opening up about myself and how becoming ill made me have to take a look at my life , success and my views of myself
As ive mentioned I am a Sober Recovering Alcoholic , I have never been a particularly intelligent women ( as in book smarts) I didn't do well at school and just wanted to drink life away, so when I got sober I somehow planted it in my head that my life goal was to be a mother
Long story made sort I was soon to find out that I have problems and may never conceive a child , due to being a troubled teen and getting in trouble with the law I doubt very much I could adopt and on top of it all I fell in love with a Much older man with a past of his own.
I felt very much like I wasn't a real woman for some time when I found out having children may not be something I can do and probably wasn't my calling
Rather than dealing with this loss I simple gave myself a new lifes goal, something else that would my life worth while and a overall success would be to have a job worth showing off , to be proud of I felt I could feel good about my life with a good career
I Studied hard , worked far to much and on more than one occasion burned out to get myself into a career I could be proud of  being able to say I am the manager of a drug and alcohol rehab , having business card I could hand out ect did make me feel good and I honestly thought the only way from there was up , to beat it all I was getting married what a success my life was!
 Then came alot of stress alot of pain and illness ,
 I had to quit working and eventually had to except that work may not be part of my future
I think the biggest emotional blow from this illness was that , I had wrongly placed my self worth on what I did for a living  and now it was gone and I wont be working for some time .... if ever ., so what was I if I wasn't a Manager .....?
I am  A wife but I not the house wife type and u unable to be if if i had wanted as I get tired out so easy
I spent alot of time crying and trying desperately to pull some self asteam together , It can still haunt me from time to time but for now im more comfortable to just be me , know I am a fighter  and will get through this with self respect if nothing else , I also have to respect that I cannot see my futcher I do not know whats coming my way and that it doesn't take children or a good sounding job to make a woman or man whole but looking in the mirror and knowing your own worth

A little comfort

over the last 18 months ive found that small things can make a big difference and i was thinking of all the little things i do or have that help me so i thought i would share them

• I have Memory foam pillow and mattress topper , to help with neck pain/ back ache and aid a good night sleep

• Vitamins , I try to eat healthy but i also take supplements and a immune system booster just over the counter stuff ( Always check with your doctor)
• Meditation, i often listen to meditation tapes /cds or just sit and let my mind fall silent
• Lavender, i burn lavender incense as it is calming and aids sleep an incense in general is great just to give one of your senses/smell something nice for a change
• Electric blanket , I have that is made for the back and straps around you but any electric blanket will do to sooth those aches and keep you warm when your feeling the cold , mine switches off after 40 mins but make sure to always turn it off
• Music, there is alot to be said for the power of music happy tunes will help to lift you when needed and relaxing music when laying down or meditating is great 
• A comfortable space, Ive made my bedroom m little haven , in a positive way, i try not to isolate but make it a place i can relax in and enjoy
• A hobby, I used to crochet but lately that has been a issue as my hands wont let me but any little thing you enjoy , A book A film, a game on the computer really anything you enjoy
• My dog , although i a in no means saying a person should run pout and get a pet i do beleave that animals are great for me ,playing with my dog or getting him out is often the only excersize i get and a good cuddle with him is always a heart warmer
• Friends its hard to keep friends when your not able to get out like you once did or be a great host but i try to keep in touch with them and see the when im well enough, people are surprisingly helpful and supportive if you let them be but not always
• Books on tape  , is something ive come to love when i cant sleep or cant concentrate its a great way to stop from starring at the walls and takes my mind of pain
• Computer . My Computer is my life line im in touch with many of my friends online i play games online i research , blog and get help from the comfort or discomfort of my own bed

Rest

Today is much like any other for me , im tired , I ache but today is a good day for me in that ive been able to get out a little the sun is out  and my puppy is playing in my bedroom Probably because i managed to sleep well last night
 I learnt a little while ago that i often have to go and lay down  , most people i think only go to there bedroom at night to sleep but ive turned my room into a nice place to be i have a large tv in my room a box on a table next to my bed with any meds or bits and bobs i may need , some nice candles , incense burner (what ever makes you comfortable), its light and bright and even if i cant get up to do much house work i try to keep my bedroom tidy ( if possible), instead of sitting on the sofa i lay down ,
 I know this may all sound silly but for me it works to take myself away from life and put myself in a nice space , in here i cant see the washing up that needs doing or bug myself that i really sound get up and do this and do that , I am doing something I am laying down.
This is something that took me a long time to learn , before i got ill i was a very busy woman , I worked to much and had a social life and home life , now day to day stuff is hard work and sometimes a social life is impossible , even more impossible when i hadn't learned to pace myself ,Of Course i still struggle but if you rest when your body is telling you to rest and try to sleep at night ( yes i know that is easier said than done with ME) it does help .
Try not to pressure Yourself to get it all done at once , dont push yourself to do something en-till you have the energy to do it, Look after Yourself first , things that help me are simple little things , im tired so i going to have a lay down , i ache so for now i will take a painkiller and later i will have a nice hot bath, I will eat well and most of all i will try to keep a happy outlook ( that doesn't happen every day but i try)
Of Coarse i have much worse days than this and in that case its not so simple but still loving myself , looking after myself comes into it and i try to do any little things that could make myself a little more comfortable ,, ile make sure to blog and a bad day to... I do hope this blog doesn't sound stupid and a bit obvious but for me this lesson took over a year to make and i want to help any one at any point of there ME journey AND im very early on in this myself

A Little more about me

I Made this blog last night and wasnt to well at the time so didnt put alot of info about me on it, As i said im 28 will be 29 in a weeks time , I live in kent england, Im married  I am also a sober Alcoholic , meaning I no longer drink and im in a 12 step program My teens were hard and I ended up in rehab a little before my 20th birthday and have not drank or used since I worked hard and was determined to make something of myself,
Just before I got Ill i was working as the Manager of a Drug and alcohol Rehab but am unable to work anymore I had to quit work Due to Ill health and stress Just a few weeks before my Marrage a Year and a Half ago
, I didnt really have any health issues before this i do have some hair loss, some what i call womens problems and a history of depression and anxiety but it havent been much of a issue since i stopped drinking ,
Im writing this post simply so anyone who may read this has a picture of the kind of person I am or was before illness  and will write another on when my Problems began later .

hello

Hi my name is sian
ive made this blog to give others in the same place as me some hope, reassurance they are not alone !!!!
im 28 and came unwell about a year and a half ago , my life has changed rapidly in that time , im going to try not to make this a poor me blog but we all need a moan , my grammar , spelling and memory are not very good any more so im sorry for that in advance, I a not yet diagnosed with Me/cfs as ive been on a waiting list for little under a year so see a specialist in there field , but ive had many tests and its about the only thing left and after researching it , watching online vidios ect i can honestly say im sure thats what it is