h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hello Bubble

I stumbled across your space whilst lurking in Abbi Normal's. Being a night shift worker sometimes brings with it hours of inactivity when the work is not here to do, so I lurk quite a lot.

I read your space with increasing interest because you mention you suffer from ME/CFS. I am in the process of being diagnosed with this, although they are going through the usual routine of eliminating everything else first.

At the moment, the only way I can hold this job down is by working from 2200 until 0600 and then going to bed from 0700 until about 1900, which just about gives me time to get up, eat, dress and go to work again. But all the time it is closing in on me and I am not even coping with the 3 hours between sleep and work, I feel I still need to be asleep.

My question is - everything! How long did it take for them to diagnose you? how did they diagnose you, in the end? how long have you had it? how bad does it get? do your joints ache like you have constant flu? Oh, just about everything I need to know... My doctor is not unhelpful, but unforthcoming. He answers every question I ask him, but no more, and so if I forget to ask him something, or there is something I do not realise I even have to ask... you get the picture.

I am nearly twice your age, but I am ashamed to say I am scared. I am a granny three times over and I want to be able to enjoy my grandchildren: play with them, read to them, take them out, have them to stay... but at the moment it is not possible.

I will stop rabbitting on now, as you may not want to have a granny cluttering up your space, but if you could take the time to drop me a line, I would love to hear from you.

Take care Universal Granny

Think more a "Super Gran" if you ask me !

So sorry it took me this long to get back to you, due to my health I can disappear for a little while, but I always come back !

I would be only too happy to help a possible fellow sufferor, I understand the confusion, pain and frustration you are going through !

I totally understand the "time closing in on you" feeling. I no longer work, as I was in a very stressful job as an accountant, and there was no way I could continue in a professional manner, and my employer was not terribly forgiving. I knew the only way to get better forever was to give up work altogether. I found myself struggling to do even the most basic of human needs, working to pay the bills, eating and keeping myself clean. Giving time to my friends and family was out of the window, my social life was non descript. I felt as if I was being sucked into a plug hole with no way out. I fought against the elements telling myself that it was just a phase, and that I just had to pull myself together. Easily the worst thing I could have done. Finally, I collapsed at work, and knew this was a very strong signal that something was seriously wrong. Went to the doctors, my blood pressure was through the roof, doctor signed me off for a week, saying must rest. On returning to GP after a week, I still felt very poorly, but my blood pressure had dropped. We did blood tests, all came back negative. I couldnt believe it, I was feeling as poorly as I did the day I collapsed, there was definately something wrong. The doctor asked what I would like to do, again I stared at her in disbelief, she was the doctor, the expert, surely she knew ! Thankfully I had done some research on the internet on the symptoms I was experiencing, they were amazingly close to that of ME, I showed these to my doctor, she agreed that it was very likely to be ME. She went away, researched and returned with a definative that it was ME. It was a week for the blood tests and then another week to confirm through research.

I was diagnosed with ME in Apr 2002, was signed off work until Aug 2002, returned to work full-time and failed, after a month I knew this was not going to work, tried to move to part time work, still no success. By Dec 2002 I could see that if I didnt do something really drastic, I would make myself permanently ill. Having been disgnosed with ME, my ambitions in life had been turned upside down, previously all I cared about was my career and everybody else, eating was not a priority, now all I cared about was my health, and thinking about myself. I couldnt give a damn about my career. If you ever get a chance to read about Maslows theory (Economic theory - Hierarchy of Human Needs), it might help to put it all in perspective.

My sister commented once, "dont you think its funny that its called ME, the reason why you got ME was because you put everything first except me", words so true. A valuable lesson in the need to learn to be a little selfish for the sake of your own long term health.

The symptoms can vary, and totally depend on the sufferer plus how long you have been sufferoring without diagnosis. This is what makes ME such a nightmare, there is no consistency, and no logic. Each person has to treat the symptoms uniquely to there own body.

My symptoms were as follows : Muscle fatigue, aching joints, loss of memory and power of concentration, slurred speech, anomia (inability to find the right words), reduced co-ordination and balance, migraines, hot sweats, waking unrefreshed to name but a few !

Generally GPs are unintentionally useless when it comes to ME, there is so little known about ME, so little research to base assumptions and prognosis on. You need to stay one step ahead of your GP, be ready with suggestions. The best things I can suggest :

1.Do some research on the internet, great sites that I have found :

The ME Association - A national charitable association offering help and support for sufferers of ME - www.meassociation.org.uk

Action for ME - A national charity campaigning to improve the lives of people with ME. It includes information, advice links and message boards - www.afme.org.uk

Support ME - An online resource for sufferers of ME, Chronic Fatigue Syndrome and CFIDS. It includes the latest research, a library of articles, message boards and support group information - www.supportme.co.uk

2. Research through reading, books that have genuinly found to be lifesavers, and I have read many ! :

Living With ME - Dr Charles Shepherd - ISBN 0-09-181679-3


B

Think more a "Super Gran" if you ask me !

So sorry it took me this long to get back to you, due to my health I can disappear for a little while, but I always come back !

I would be only too happy to help a possible fellow sufferor, I understand the confusion, pain and frustration you are going through !

I totally understand the "time closing in on you" feeling. I no longer work, as I was in a very stressful job as an accountant, and there was no way I could continue in a professional manner, and my employer was not terribly forgiving. I knew the only way to get better forever was to give up work altogether. I found myself struggling to do even the most basic of human needs, working to pay the bills, eating and keeping myself clean. Giving time to my friends and family was out of the window, my social life was non descript. I felt as if I was being sucked into a plug hole with no way out. I fought against the elements telling myself that it was just a phase, and that I just had to pull myself together. Easily the worst thing I could have done. Finally, I collapsed at work, and knew this was a very strong signal that something was seriously wrong. Went to the doctors, my blood pressure was through the roof, doctor signed me off for a week, saying must rest. On returning to GP after a week, I still felt very poorly, but my blood pressure had dropped. We did blood tests, all came back negative. I couldnt believe it, I was feeling as poorly as I did the day I collapsed, there was definately something wrong. The doctor asked what I would like to do, again I stared at her in disbelief, she was the doctor, the expert, surely she knew ! Thankfully I had done some research on the internet on the symptoms I was experiencing, they were amazingly close to that of ME, I showed these to my doctor, she agreed that it was very likely to be ME. She went away, researched and returned with a definative that it was ME. It was a week for the blood tests and then another week to confirm through research.

I was diagnosed with ME in Apr 2002, was signed off work until Aug 2002, returned to work full-time and failed, after a month I knew this was not going to work, tried to move to part time work, still no success. By Dec 2002 I could see that if I didnt do something really drastic, I would make myself permanently ill. Having been disgnosed with ME, my ambitions in life had been turned upside down, previously all I cared about was my career and everybody else, eating was not a priority, now all I cared about was my health, and thinking about myself. I couldnt give a damn about my career. If you ever get a chance to read about Maslows theory (Economic theory - Hierarchy of Human Needs), it might help to put it all in perspective.

My sister commented once, "dont you think its funny that its called ME, the reason why you got ME was because you put everything first except me", words so true. A valuable lesson in the need to learn to be a little selfish for the sake of your own long term health.

The symptoms can vary, and totally depend on the sufferer plus how long you have been sufferoring without diagnosis. This is what makes ME such a nightmare, there is no consistency, and no logic. Each person has to treat the symptoms uniquely to there own body.

My symptoms were as follows : Muscle fatigue, aching joints, loss of memory and power of concentration, slurred speech, anomia (inability to find the right words), reduced co-ordination and balance, migraines, hot sweats, waking unrefreshed to name but a few !

Generally GPs are unintentionally useless when it comes to ME, there is so little known about ME, so little research to base assumptions and prognosis on. You need to stay one step ahead of your GP, be ready with suggestions. The best things I can suggest :

1.Do some research on the internet, great sites that I have found :

The ME Association - A national charitable association offering help and support for sufferers of ME - www.meassociation.org.uk

Action for ME - A national charity campaigning to improve the lives of people with ME. It includes information, advice links and message boards - www.afme.org.uk

Support ME - An online resource for sufferers of ME, Chronic Fatigue Syndrome and CFIDS. It includes the latest research, a library of articles, message boards and support group information - www.supportme.co.uk

2. Research through reading, books that have genuinly found to be lifesavers, and I have read many ! :

Living With ME - Dr Charles Shepherd - ISBN 0-09-181679-3


B

Think more a "Super Gran" if you ask me !

So sorry it took me this long to get back to you, due to my health I can disappear for a little while, but I always come back !

I would be only too happy to help a possible fellow sufferor, I understand the confusion, pain and frustration you are going through !

I totally understand the "time closing in on you" feeling. I no longer work, as I was in a very stressful job as an accountant, and there was no way I could continue in a professional manner, and my employer was not terribly forgiving. I knew the only way to get better forever was to give up work altogether. I found myself struggling to do even the most basic of human needs, working to pay the bills, eating and keeping myself clean. Giving time to my friends and family was out of the window, my social life was non descript. I felt as if I was being sucked into a plug hole with no way out. I fought against the elements telling myself that it was just a phase, and that I just had to pull myself together. Easily the worst thing I could have done. Finally, I collapsed at work, and knew this was a very strong signal that something was seriously wrong. Went to the doctors, my blood pressure was through the roof, doctor signed me off for a week, saying must rest. On returning to GP after a week, I still felt very poorly, but my blood pressure had dropped. We did blood tests, all came back negative. I couldnt believe it, I was feeling as poorly as I did the day I collapsed, there was definately something wrong. The doctor asked what I would like to do, again I stared at her in disbelief, she was the doctor, the expert, surely she knew ! Thankfully I had done some research on the internet on the symptoms I was experiencing, they were amazingly close to that of ME, I showed these to my doctor, she agreed that it was very likely to be ME. She went away, researched and returned with a definative that it was ME. It was a week for the blood tests and then another week to confirm through research. Then I was referred to a specialist who confirmed it was ME, the referrel actually took 3 months due to NHS waiting lists. Thankfully I had Psychological help to deal with the management of ME, pacing techniques, and ways to alleviate symptoms.

I was diagnosed with ME in Apr 2002, was signed off work until Aug 2002, returned to work full-time and failed, after a month I knew this was not going to work, tried to move to part time work, still no success. By Dec 2002 I could see that if I didnt do something really drastic, I would make myself permanently ill, thus I gave up work totally. Thus giving up a handsome salary, confidence, independence. pride, lifelong ambitions, and so, so much more. Having been diagnosed with ME, my ambitions in life had been turned upside down, previously all I cared about was my career and everybody else, eating was not a priority. Now all I care about is my health, and thinking about myself. I couldnt give a damn about my career. If you ever get a chance to read about Maslows theory (Economic theory - Hierarchy of Human Needs), it might help to put it all in perspective.

My sister commented once, "dont you think its funny that its called ME, the reason why you got ME was because you put everything and everybody first except for yourself ie, me", words so true. A valuable lesson in the need to learn to be a little selfish for the sake of your own long term health.

The symptoms can vary, and totally depend on the sufferer plus how long you have been suffering without diagnosis. This is what makes ME such a nightmare, there is no consistency, and no logic. Each person has to treat the symptoms uniquely to there own body.

My symptoms were and are as follows : Muscle fatigue, aching joints, loss of memory and power of concentration, slurred speech, anomia (inability to find the right words), reduced co-ordination and balance, migraines, hot sweats, waking unrefreshed to name but a few !

Generally GPs are unintentionally useless when it comes to ME, there is so little known about ME, so little research to base assumptions and prognosis on. You need to stay one step ahead of your GP, be ready with suggestions. The best things I can suggest :

1.Do some research on the internet, as with any research on the internet be wary of people making claims of instant health, it is not true. Great sites that I have found :

The ME Association - A national charitable association offering help and support for sufferers of ME - www.meassociation.org.uk

Action for ME - A national charity campaigning to improve the lives of people with ME. It includes information, advice links and message boards - www.afme.org.uk

Support ME - An online resource for sufferers of ME, Chronic Fatigue Syndrome and CFIDS. It includes the latest research, a library of articles, message boards and support group information - www.supportme.co.uk

2. Research through reading, books that I have genuinly found to be lifesavers, and I have read many ! :

Living With ME
Dr Charles Shepherd
ISBN 0-09-181679-3

ME Chronic Fatigue Syndrome : A Practical Guide
Dr Anne MacIntyre
ISBN 0-7225-3539-2

What ever you do dont be scared, the are so many people who can help you, and now you have one more ! I am more than happy to assist if I can. Dont ever accept anything less than the best, your health is more important than anything else, thus enabling you to be there for your grandchildren.

Do you have MSN ? Maybe we could have a chat if you feel that would help ? Or if you are or becoming confused. I hope this has helped as a starting point.

Please stay in touch, let me know how you are doing.

Bubble

Apologies ! I dont know why but this posted several times ! Please read the final posting, which includes all the information

Bubble

Hello Bubble

I hope you don't think me too rude for not getting back to you. Truth is that at the end of September I had to go sick from work and have only just returned in the last week.

I could neither sleep nor stay awake, get up or stay lying down, speak or remain silent. It has been a bit of a nightmare of a time. And they still will not commit to it being ME, but that is possibly my fault, because I have not had the energy to even get to the doctor's surgery, or push my views when I did make it.

I am back at work, but not doing too much. Fortunately, there is no one looking over my shoulder, and the lads I supervise just get on with the work like they did when I was off sick.

But how are you? Have things improved for you at all?

Let me know if you have time.

Take care Universal Granny

Hi Universal Granny !

Was so good to hear back from you! Sounds like you have been having a tough time, made even worse by the fact that you don't have a name to put it to, or tag to hang on your hard times. I promise when finally you are diagnosed, it will be a huge relief for you, things start slowly falling into place. Until you get that diagnosis, things will be up in the air, and you will always be wondering what is wrong with you. All I had to have was several blood tests to prove that it was not the obvious things, once they were discounted it can only be one thing....ME!

I have been having a really tough time. My father has terminal cancer, made more difficult by the fact that he lives in Spain. I am having to go backwards and forwards between Spain and UK, frequently. My Mum and Sister have been very supportive towards me, realising that I can not do everything that they do. I am currently home for a break to try and catch up on some energy. Emotionally it is very draining. My boyfriend, who I live with, continues to be my guardian angel, supporting me not having to be at work, and supporting me through this tough time with my father. What is really tough is this situation will only get better for me when my father dies, which is a bitter sweet pill I am struggling to come to terms with.

Let me know how you are getting on, try and get to the doctors if you can, diagnosis answered alot of questions for me, allowed me to take on the next battle of explaining to people what this means!

Take care

Bubble