new person

[SharonR]

Hi i'm Sharon i've had cfs/m.e/fibro for 5 years, i only found out about MESH a week ago, i'm pretty much stranded not able to leave the house very often and i have a disabled husband too, Professor Pinching diagnosed me after 3 years of fighting with my g.p as to what was wrong with me, sadly i still believe my gps are not at all understanding if they believe the diagnosis at all .
I believe mine started after a really bad flu bug and my husband being on life support for many weeks, i totally burnt out and never got back up again. This is such a lonely illness and although i pace i spend each day pretty much alone, i think my husband is finding it hard to understand just what really is going on even tho we did a course, so i still feel like i cannot talk about it much. I feel very embarrassed when i have to tell anyone about my illness because so many people including gps look at me as if i'm making it all up :dodgy, its just not fair. I have now sent my membership off to MESH and i hope things change a bit, it will be nice to speak to people that understand me.
I'm extremely glad i have found this forum

[hollys]

Hi Sharon

I am a newbie too, and completely understand about nobody beliveing about the illness it is very frustrating and most people think that i am lazy.

Welcome to the forum and i hope this helps you.

Holly

[lizsam]

Dear Sharon,
I know this illness is confusing, disabling, disheartening and all the other 'ings', but, take heart, treat yourself well,sleep, rest, do little things that you enjoy, mine is normally having a bath! I don't know how ill you are at the moment but there are alot of little things that can help us along the way. Acceptance helps, try to accept that this is an illness that your body just doesn't work properly at the moment and it isnt your fault. Then rest, sleep, eat well, and enjoy the little things in life.
There is a lot more that helped me along the way which I can pass on if you like when I know a bit more about your situation. Meanwhile take care of yourself. With love Liz x
I don't go on the computer daily so replies might take a while but I will reply.

[SharonR]

Hi
i'm dreadful atm pain from head to toe brain fog to the point i'm having groundhog days, i can barely get out the house, awful anxiety attacks, i'm falling all over the place, i care for my husband too well at least try to as he's chronically disabled too.Doctors don't listen
love Sharon xxx

[lizsam]

(03-17-2010 08:10 PM)SharonR Wrote:  Hi
i'm dreadful atm pain from head to toe brain fog to the point i'm having groundhog days, i can barely get out the house, awful anxiety attacks, i'm falling all over the place, i care for my husband too well at least try to as he's chronically disabled too.Doctors don't listen
love Sharon xxx

Hi Sharon, right first you need to take control as much as possible. This does not mean pushing yourself, in fact, quite the opposite.
First, acceptance of the illness is important, altough we all struggle with this, we need to accept that our bodies just don't work right.
Next, rest, rest, rest. Proper quality rest, no visual, auditory or mental stimulation. Lying on he sofa under a blanket with nolights etc worked the best for me. Several times a day, even for a few minutes each time, though preferably for at least half an hour, with no guilt, your body needs the rest.
Start on this and then I will e-mail more ideas.
Don't know how much, or what you have tried? Have you any help or family around?
Take care, especially of yourself, Liz x

[SharonR]

hi lizsam
thankyou for your reply, i will definately try that, thankyou. my family all live 8 or 9 hours away so i have a friend that comes to help me somedays when things are really bad.
I take amino acids that used to really help, i also take omegas 3,6 and 9, and then there is the vast quantities of medication the doctor hands out oh and i tried tapping once but it took way too much energy and i didn't really see much if any of an improvement.
thankyou again
Sharon xxxxxxxxxxxx

[lizsam]

(03-19-2010 08:57 AM)SharonR Wrote:  hi lizsam
thankyou for your reply, i will definately try that, thankyou. my family all live 8 or 9 hours away so i have a friend that comes to help me somedays when things are really bad.
I take amino acids that used to really help, i also take omegas 3,6 and 9, and then there is the vast quantities of medication the doctor hands out oh and i tried tapping once but it took way too much energy and i didn't really see much if any of an improvement.
thankyou again
Sharon xxxxxxxxxxxx

Sharon, am going to write up more help and advice on this forum soon, Liz xx

[garry831]

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[willium46]

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