3rd July 2007...
Yesterday, my daughter and her two kids came to visit... and stayed over... and my sister also... it was great to see the kids... as I have not seen them since April the 22nd... they have came on in leaps and bounds... god bless them.... Yesterday... I was feeling okay... but as the day went on.. I began to tire... but I got on with things...
My sister, myself and my daughter had a laugh last night.... it was a nice change... but today... i have been up from 6am... and been on the move constantly...
Around 12pm... I was not feeling too great... the outcome of that was the fact that I was stressed... and anxious... there was just to much going on at the same time... and I was starting to struggle...
My sister left to go home with her partner... and myself, the kids and the wee ones... went to my mums.... for an hour or so... it was there that things started to go wrong.... but I played it out.... no one realised.... ~phew~
I think to be honest... I should be an actress.. as I would make a pretty dam good one at that... lol
After all... I can take dry washing off the line... fold it and put it in the basket... and no-one realised at that point... I felt sick every time I stood up, my legs were like jelly... my head was filled with fog... and the concentration of taking the pegs from the clothes... to remove them from the washing line... was a battle... as in the aspect of folding the clothes... I sat down on the paving stones... as I was struggling to stand... so, I made it look good by folding the clothes... brilliant or what???
Again... I have been my own worst enemy today... as I constantly push myself.... regardless of how I feel... and I know that once I stop... my C.F.S. has full control.... yet again....
At the moment... my head is still working.... so far... but every other aspect of normality... is going to sleep bit by bit....
I am aware... that in my daughters eyes... she thinks that I am a selfish, disinterested bitch.... as I make excuses at times to prohibit a visit.... from her and the kids... but I love them all to bits.... but the truth of the matter is... that for every overnight visit.... I have a price to pay....
And trust me... at the moment... I am paying the price... big time!!!
I would just like to know... why are these prices... being imposed on me???
Everyone else... can spend time with family members... and have fun... without a price....
To be honest... the factor that is imposing a price on normality... is being racist... for what reason I do not know.... nor understand.... now what body can I take my complaint to?????
Hey, I found out today... that there is a London radio station addressing the controversy of C.F.S. tomorrow....
Join Jim Davis and Dr Sarah Burnett discussing ME & CFS on London's LBC 97.3 on Wednesday 4th July at 1pm.
Listen live on 97.3FM in the London area or online via www.lbc.co.uk/lifestyle
Contribute to the conversation by calling during the show on 0870 90 90 973
Best wishes,
LBC 97.3
To those that suffer... the best of British... and I hope that some understanding occurs.... and to the rest.... hopefully acknowledgement that C.F.S. is not just a factor of being tired....and lazy.... perhaps now understanding of the situation will set in....
note....
(this itself is acquired acknowledgement that such a discussion will take place.... and if not... there will be no liable apologies if it does not as I have accepted this information to be true on good faith)
But on the other hand..... here is hoping!!!!!
It's about time... recognition of this depilating illness... was understood....
Don't you think?????
4th July 2007...
Today.. I was on a mission... well that was after I could walk on my left leg... my head stopped aching... I stopped feeling sick... and the brain fog cleared from my head.... and yes, I had an early night last night.. and a long lie this morning...
My mission today... was to make my "rapid reclaim" with the D.H.S.S. after they buggered up my initial claim... for benefits... it has taken me all day, literally... they were having problems with the phone lines... and regardless of the promises made that if I got cut of again... they would call me back... but no one ever did... I have spent all day... bit by bit, trying to give them the required information... eventually it was finalized around 5pm... at last!!!!!
I decided today to contact Tesco... to find out why, no one has contacted me... I asked to speak to the personnel manager... and again, she was at another store... so I took it in my infinite wisdom to speak to the store manager... no joy there either... he is on annual leave... no worries, I left a message for the personnel manager to contact me... well.. it's not as if she doesn't know that I am still waiting to tie up the loose ends.... my head is bursting!!!!!
How many of you tuned into LBC 97.3 today... and listened to the broadcast on C.F.S./M.E. ? myself.. and several of my friends did... we listened online as we do not stay in the London area...
Personally speaking... although Dr Sarah Burnett... seemed knowledgeable on the subject itself... I felt that that the controversy of the subject itself.... had been merely brushed over... and most of the on air time... which was an hour... was filled with adverts... and at one point... just when things were getting more realistic.. the subject was taken off air... and the Dr told the carer who had phoned her... that she would call her back...
I did phone the radio station... to partake in the show... I was asked what I wanted to say... and I basically told them that I wanted to let folks know about the negligence of the N.H.S. itself... and I wanted to discuss.. the factor... as to why we are all being labeled as depressives... I also wanted to know.. why we are being dismissed to such entitlements... such as D.S.L.A.
GUESS WHAT???
THEY DID NOT PHONE ME BACK....
But the radio station itself... had joined my forum.. as a C.F.S. sufferer...
I did not know.. that radio stations suffered from C.F.S. and I now have a new member... LBC 973 oh well.. the more the merrier... lol...
part 2 of my diary entry....
Right now I am buggered... again I have pushed myself to far... it wouldn't be like me... lol but right now I am struggling.... and still fighting... I wanted to phone my friend... but my speak has gone again.... this time I practiced first... lol... but yes, I'm really peeved of...and I'm struggling to deal with the concept of silence.... but I have a friend to help me deal with this concept...
hello darkness my old friend
we need to meet again
as again I have touched on
the sounds of silence
I want to scream...
I want to shout
but the words will not
come out...
again my words echo in
the sound of silence...
for now I will join
you in the world of darkness
Perhaps tomorrow I may take
the journey to and reach the light
But for now..
I am happy and secure
Reality has tired me
I had to escape...
For now... my friend darkness
will shield me from any aspect
of the light
In the darkness...
we are at one with unreality
as we cannot see...
We have curtained the aspect of
reality
For now, I am safe and secure
until the aspect of reality
shines through the curtains of
my life
5th July 2007...
The full controversy of C.F.S/M.E is swings and roundabouts... then we get dizzy.. then feel sick.... then it takes us a few days to recover....
I have spent the day relaxing... this morning... all was okay, then I was floored... perhaps I tired myself out just by breathing... I should learn to pace my breathing.... lol
I need to have an early night... big time!!!
I tried to sleep earlier... but it was not happening... my body feels heavy... and I ache all over... since then I have pushed myself to function.... but for now, enough is enough...
I'm calling it a night....
Sweet dreams...
6th July 2007...
Today has been absolutely hellish!!!! I had an early night last night... and slept until 8.40am this morning... and when i got up... I felt that I had not slept at all... for the rest of the day... I just felt so lethargic... my body felt so heavy... I felt sick.. and still had a headache... I had no interest in anyone or anything... and even a telephone conversation... floored me within a few minutes.. around 5pm ish... I seemed to get my second breath... at the moment... I seem to be okay... but I am starting on another downward spiral.... I have a headache... and I'm very agitated....
Yesterday... I received an e-mail from LBC 97.3 informing me.. that they have put a direct link to my website on Dr Sarah's homepage... for anyone who is looking for help and support....
http://www.lbc.co.uk/article.asp?id=348432
My link can be found in the sentence... Suffering from ME / CFS & looking for support? click here.... on the homepage...
I really appreciate there actions... as this way... I can reach a lot more people... and let them know that they are not alone... in there journey of C.F.S/M.E as my website is not full of medical terminology... but life through a real C.F.S/M.E sufferers eyes... and I will always be here to help others... if you drop me a message... via the forum, my experiences... or the guestbook... I will contact you personally or if you just choose to take a peek at my website... I hope it helps... to establish some sort of understanding within yourselves... as fellow sufferers...
I was having a bit of a laugh with Colin... (co-presenter of the website) earlier....
Why is it... when I have not had a can of beer or two... that I can't type a word... but when I have had a couple of beers... I can produce and maintain a website???
Should it not be the other way around... lol
Welcome to the wonderful world of C.F.S whereas... anything can happen... normality has been dismissed... and basically... we suffer from illnesses that can't be detected... nor recognised...
Perhaps... one day.. they will have to rewrite the medical encyclopedias... to include the psychosomatic illnesses that C.F.S produces.... as up till now... although they claim that the illness itself... has been recognized... we are still labeled as depressives....
I still chuckle to myself though... especially about the time that I was told from the doctor.. who examined me thoroughly... gave his prognosis as a kidney infection... and I was shaking because he claimed that the infection had went through my blood stream... and gave me antibiotics, at the time.. I did not think it was funny... as I was very ill... but when the urine test came back... it was clear.... there was no sign of an infection... to date.. I still have nor received an explanation from the doctor....
I wonder why??? lol
Other Diary Entries
Week Beginning
2008
September:
29th, 22nd, 15th, 8th, 1st
August:
25th, 18th, 11th, 4th
July:
28th, 21st, 14th, 7th
June:
30th, 23rd, 16th, 9th, 2nd
May:
26th, 19th, 12th, 5th
April:
28th, 21st, 14th, 7th
March:
31st, 24th, 17th, 10th, 3rd
February:
25th, 18th, 11th, 4th
January:
28th, 21st, 14th, 7th2007
December:
31st, 24th, 17th, 10th, 3rd
November:
26th, 19th, 12th, 5th
October:
29th, 22nd, 15th, 8th, 1st
September:
24th, 17th, 10th, 3rd
August:
27th, 20th, 13th, 6th
July:
30th, 23rd, 16th, 9th, 2nd
June:
25th, 18th, 11th, 4th
May:
28th, 21st, 14th, 7th
April:
30th, 23rd, 2nd
March:
26th, 19th, 12th, 5th
February:
26th, 19th, 12th, 5th
January:
29th, 22nd, 15th, 8th, 1st2006
December:
25th, 18th, 11th, 4th
November:
27th, 20th, 13th, 6th
October:
30th, 23rd
