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jay | jayc~DOT~lawrence~AT~gmail~DOT~com
I'm curious, how did you all get diagnosed??? I'm concerned that the world doesnt know what I have, occupational health has told me to get a GP referral to a mental health specialist, Maybe a psychologist could help me get to the bottom of it, But 10 years now and it's not any easier,

People treat me like i'm lazy and manipulative, Like I want to screw the system for all that I can, backstab people, but it's about survival now, Sometimes I can be awake unable to sleep for 24 hours then sleep for 16,

What can be done for something I have no idea what it is? I like to think I am never ill and that I have a strong immune system but in retrospect I always feel like ****

29 October, 2007 at 10:27 - United Kingdom

solsticedreamer | solsticedreamer~AT~hotmail~DOT~co~DOT~uk
i finally found a non-medical M,E/CFS site yippe!!! and its great thank you so much!
i have started my own blog to do with my life with CFS(diagnosed early 2005),can i please put a link to your site there?
i have been hoping to find links to sites for sufferers and have been trying to track down chat forums but they are few and far between,unless i have not been looking in the right places!

again i am so pleased to have found this!!!

18 October, 2007 at 17:12 - dorset,UK

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Webmaster comments :
We're happy to have you here, and yes of course you can add a link to our site on your blog :D

Colin


Claire Parr | silver-cybil~AT~hotmail~DOT~co~DOT~uk
oh my goodness, i'm sitting up awake at 2am and feeling as if no one understands what i'm going through, until i read this site! I would say it's nice to see that someone understands what i'm going through but thats nice for me not you, Thank you for the clarity that's suddenly occured in my usually cottonwool brain x

14 October, 2007 at 08:06 - England

julia | julialw~AT~hotmail~DOT~co~DOT~uk
I HAVE FOUND YOUR SITE VERY HELPFUL ,I HAVE HAD CHRONIC FATIGUE SYNDROME FOR NEARLY 4 YEARS,IT IS NICE TO KNOW THERE ARE PEOPLE THAT UNDERSTAND HOW I AM FEELING,NOT JUST ASSUME HOW YOU ARE FEELING,

22 September, 2007 at 18:49 - great britain

unknown | unknown
High it is the second time on your site, I have had a rubbish week ,i have had nights bad sweats that are having me to have to change my night clothes i feel just feel so useless most of that i can not do anything without being so tired that i have to stop what ever i am doing and go to sleepand on what i call my good days i am able to walk slowly with help from my stick and people think that there is nothing wrong with me, and on my very bad days when i am unable to walk at all or even move, they say oh you could walk yesterday, what wrong with you today, which can really hurt me so i try to carry on with every day life even when i in a lot of pain and really tired that i could fall asleep straight away, sorry for going on thanks for letting me let of steam,

3 October, 2007 at 22:41 - unknown

Crystal | ccastley~AT~hotmail~DOT~com
I have had ME/CFS for 8 years and have dipped in and out of jobs during this time, falling very ill and then functioning for short periods of time;but following the birth of my son (who is now 2 - I returned to work due to needing to pay the mortgage when he was 4 months old) I just haven't been able to recover properly, I think this is due to a number of things, including my partner’s head injury over a year ago that was very serious (thankfully he has recovered on the face of it and was able to return to work earlier this year) and left me the only one able to work for some time whilst not particularly well anyway, I live 200 miles away from my family but I thank God every day for my wonderful husband, my beautiful son and all His blessings upon me, For the past few months I have been unable to work or really function, and I don't find this kind of website helpful to be honest,

I am not saying that I don't appreciate how you're feeling, because having been to see one of the only ME/CFS specialists in the UK (Dr Perrin who graded me a '3' on his scale, 0 being ‘dead’ and 10 being healthy) I am definitely at the end of my tether myself, And more than half dead apparently!

3 October, 2007 at 21:52 - Liverpool

Crystal | ccastley~AT~hotmail~DOT~com
I think that ME sufferers should encourage each other; that is not to say that we shouldn't tell each other (and yes, the majority of the world who do not understand) how it is and indeed how BAD it is at times, but we should also share the good days, and recognise progress without waiting for the bad things to happen, Life is difficult for everyone and a maudlin attitude certainly doesn’t help, It’s for this reason I have been so reluctant to join a support group, Far too many seem to want to share the misery rather than recover, and I would love to hear from anyone who feels that they too want to support each other, and not wallow in this,

As I understand it, ME/CFS is a result of many things happening in the body, but put simply, the body is too full of toxins to cope (often due to an overload, physically or mentally at some point) and instead of draining them, the body just keeps sending them round in a big loop, Added to this, the body produces an almost continuous supply of adrenaline to help our bodies fight this perceived state of threat and this is what leaves us constantly exhausted, ill, and all those other things that come with the territory, As I see it, a negative attitude can only help our bodies to continue this vicious cycle and I think it is our duty as sufferers of ME/CFS to help each other to think positively to aid our recovery, We all KNOW what the bad days are like, and as much as it (in the early stages) is a relief to find out you're not the only one, it is this kind of public self-pitying attitude that perpetuates the prevalent idea in the medical world and society in general that ME/CFS is a mental health problem or that ME/CFS sufferers have "perpetuating illness behaviour" as one so-called expert put it, We all know this kind of attitude is unhelpful and unfair, but unfortunately that’s the way the cookie crumbles and the only thing we do by complaining openly rather that trying to help ourselves is lend credence to their theories,

Let’s stop wallowing and start getting better,

My best wishes to you all

3 October, 2007 at 21:44 - Liverpool

Soo | soo~DOT~p~AT~hotmail~DOT~co~DOT~uk
This is my 12th year (10 as diagnosed) with what I like to call my curse, Have gone from very useless & being confined to bed to slowly recovering and having an almost normal existence about 3 yrs ago, However after a series of setbacks can feel myself going back and back, Dont even bother the doctor anymore its just demoralising when you're quite sure he thinks you are wasting his time, Even lost my disability allowance when the old codger they sent to reassess me obviously thought this a non existent condition, Life is much easier when I am left to my own devises and if I feel I have to stay in bed all day I do just that, Up until today had given up looking at the never ending websites so don t know what drew me to this one, but after reading some of the messages have remembered that I am not the only one feeling this wretched, I was beginning to feel like a freak, Sometimes feel that friends and family forget that I actually have an illness and just treat me as being a bit eccentric and quirky, Well thats the longest rant I've had in a while, Must do it again soon, :

2 October, 2007 at 21:28 - Kent

Nicola Dean | deanie30~AT~tiscali~DOT~co~DOT~uk
Hi everyone, I can relate to many things throughout this website and think it is great, I wish I had found this when I was at my worse, I had anxiety and depression which eventually turned to M,E and eventually I spent nearlt two years in bed, I couldnt make a cup of tea, think, laugh and I wanted to kill myself, I have to say I had tries everything and felt so frustrated and thought it was just me,I felt so useless, eventually I went to health and well being show(virtually in my pyjamas) and reluctantly gave a guy called a Mickel therapist the time of day, I am very glad I did, I had 5 sessions and I am now completely better ( 15 years on) he explained that a doctor in scotland had left his practice after frustration of not being able to help people and give them answers, for 10 years now he has been working with M,E sufferers, e,t,c and believes that the Hypothalamus is the part of the brain responsible for balance, he believes that this goes into overdrive, the trials for this will start shortly as around 800 people have become well from his therapy, Please check out for your self the job of the hypothalamus and see for your self the connections you can make, If just one person read this and Mickel Therapy helped them,I would be glad I told my story, Well done everyone, it is such a soul destroying illness, x x much love and understanding,
Nicola

21 August, 2007 at 03:47 - South Wales

tori | tori_babygirl81~AT~yahoo~DOT~co~DOT~uk
hi, i just found your website amd just feel like i need to talk/type to somebody, my husband has had cfs for the past 5 years, he is 24, almost 2 years ago his condition went downhill so bad that i had to give up work to look after him, we live on benifits in a council estate and because we are so young are looked down on like we are lazy scum, i would do anything for my husband and i wish i could make people understand how much pain he is in daily and not look down on him with contempt, i have nothing but admiration for the people who struggle with this horrible condition daily, its nice to know that there are others like us out there, so thankyou for your website,

31 July, 2007 at 21:04 - u,k

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Webmaster comments :
Hi, Tori... ~HUGZ~ It sounds as if you love your husband very much, and never let anyone bring you down as they have no right to judge others... after all, firstly they do not know you.. and secondly, do not, nor want to, understand the hardship that you and your husband are going through at the minute..to be honest, I have also had C.F.S for 5 years, and in the last 2 years my condition has increased in severity also. In 6 weeks time, I will be living on benefits and I am also in a council house and a single parent, so you are not alone. Perahps I also will be looked upon as being "lazy scum" but the first time I overhear that, I will have to remind them of the factor, that lazy people do not contract such an illness,so, within.. they are perfectly safe.. and secondly I would ask others if they could cope with what you and your husband have to deal with on a daily basis... me thinks not!!!

~HUGZ~ Linda x


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