M.E/Fibromyalgia/CFS

Aphrodite26

Active Member
#21
Everytime im ill or in hospital people love to tell me how well I look. I just want to tell them to piss if and sulk. Oh I never talk to my friends about this so it's great to chat to you guys. X

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I hate the "oh you seemed fine yesterday"
Yeah because if I complain I have to explain! It's an invisible illness. They have no idea how much energy it takes just to get up and get showered and dressed. I have to do it in stages!
I don't have people round my house often as I can't do all my housework at once to have it the way I like it.
I only go out once a month as it takes 5 days to get over it.
I'm scared to let people in to my life (I.e men) as I'm convinced they will run for the hills when they see me on a bad day.
It's hard accepting who I am now compared to who I used to be. But once I did it's easier. Although I still have days where I'm in denial xx


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#22
I hate the "oh you seemed fine yesterday"
Yeah because if I complain I have to explain! It's an invisible illness. They have no idea how much energy it takes just to get up and get showered and dressed. I have to do it in stages!
I don't have people round my house often as I can't do all my housework at once to have it the way I like it.
I only go out once a month as it takes 5 days to get over it.
I'm scared to let people in to my life (I.e men) as I'm convinced they will run for the hills when they see me on a bad day.
It's hard accepting who I am now compared to who I used to be. But once I did it's easier. Although I still have days where I'm in denial xx


Sent from the catphone
Getting up, having a shower and getting dressed is just so exhausting, I have to have a little rest and a shower chair. I feel like such an old lady. I once told my friend oh just getting through the day is exhausting. Her response was "oh god, don't be so morbid" WTF. Hence I never talk about things and everyone thinks im fine. Phew its nice to get it off your chest.

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Meira

Active Member
#23
I hate the "oh you seemed fine yesterday"
Yeah because if I complain I have to explain! It's an invisible illness. They have no idea how much energy it takes just to get up and get showered and dressed. I have to do it in stages!
I don't have people round my house often as I can't do all my housework at once to have it the way I like it.
I only go out once a month as it takes 5 days to get over it.
I'm scared to let people in to my life (I.e men) as I'm convinced they will run for the hills when they see me on a bad day.
It's hard accepting who I am now compared to who I used to be. But once I did it's easier. Although I still have days where I'm in denial xx


Sent from the catphone
I married an amazing guy last year but I get really worried that I won't be good enough for him. He would love to go partying every Saturday night and travel to far flung places and I know this is something I can't and don't enjoy doing. When we got together he was enjoying the slower paced life but I think now were getting into our thirties and trying to work out how kids will factor in, there's all these things he suddenly feels like he's missing out on.

Don't get me wrong he's really supportive but all it takes is one little comment from him when I'm not feeling at my best and all that support feels like it's being ripped away.

Those of you in long term relationships, how do your other halves handle things?
 
#24
I hate the "oh you seemed fine yesterday"
Yeah because if I complain I have to explain! It's an invisible illness. They have no idea how much energy it takes just to get up and get showered and dressed. I have to do it in stages!
I don't have people round my house often as I can't do all my housework at once to have it the way I like it.
I only go out once a month as it takes 5 days to get over it.
I'm scared to let people in to my life (I.e men) as I'm convinced they will run for the hills when they see me on a bad day.
It's hard accepting who I am now compared to who I used to be. But once I did it's easier. Although I still have days where I'm in denial xx


Sent from the catphone
I think I've told you before, there are some rare gems out there I promise. My poor OH is exhausted looking after me but he's not run for the hills yet.

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Aphrodite26

Active Member
#25
I think I've told you before, there are some rare gems out there I promise. My poor OH is exhausted looking after me but he's not run for the hills yet.

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I've actually started chatting to a guy who knows about it as his sis in law has it. But we shall see.
I've been seeing less and less of S.H as he is known on another thread. X


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#26
A friend of mine has an amazing blog about her journey with fibro and how she heals naturally. She has helped and inspired me so much this year. Let me know if you want the link to her blog. She currently own and runs a salon, has 2 children, goes on local radio twice a week, writes her blog, has 2 books published and deals with her fibro. She is my guardian angel and I love her.
 

Aphrodite26

Active Member
#27
A friend of mine has an amazing blog about her journey with fibro and how she heals naturally. She has helped and inspired me so much this year. Let me know if you want the link to her blog. She currently own and runs a salon, has 2 children, goes on local radio twice a week, writes her blog, has 2 books published and deals with her fibro. She is my guardian angel and I love her.
Oh please share.
How the hell does she do that with fibro!
I'm lucky if I can work 3 days and look after myself x


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#28
I've actually started chatting to a guy who knows about it as his sis in law has it. But we shall see.
I've been seeing less and less of S.H as he is known on another thread. X


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As my friend always tells me "good things come to those who wait" I'm still bloody waiting(for a diamond ring) but waiting with hope is so much nicer :p
 

Meira

Active Member
#29
A friend of mine has an amazing blog about her journey with fibro and how she heals naturally. She has helped and inspired me so much this year. Let me know if you want the link to her blog. She currently own and runs a salon, has 2 children, goes on local radio twice a week, writes her blog, has 2 books published and deals with her fibro. She is my guardian angel and I love her.
Can you send me a link please? Xx
 
#30

Meira

Active Member
#31

Aphrodite26

Active Member
#32
#33
Yay! Fellow ME peeps :)

I'm just coming out the other side of a major bout of it all. First hit me when I was about 14/15 and never got to finish school. Back then they didn't know what to do with me and just said here's some antidepressants! I feel like I got support from medical professionals this time, i'm lucky, but I do feel like I'm learning to cope :)

Tara Louise Tans x
 

Aphrodite26

Active Member
#34
Doctors still don't know a lot about it so aren't good at helping. Pleased your getting support hunni xx


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lila22

Active Member
#35
What have you all found works the best?
I've tried immuglobin injections
Chinese medicine
No wheat/dairy
Reverse therapy
Cognitive therapy
Phisio therapy
Citalapram
Codine phosphate

I did find no wheat and dairy really helpful, I did this about right years ago after seeing a nutritionist but she has since moved abroad. I seen others but not as good and the diet she gave me was really hard so need some guidance.
X
 
Last edited:

lila22

Active Member
#36

izzidoll

Strictly Scottish Geek!
#37
GPs in general don't seem to know much about the causes of these autoimmune conditions, much less how to treat them.

I do empathise with you all as I also have an auto immune condition, although nowhere near as debilitating as ME and Fibromyalgia.
There is no one department that deals with my Sarcoidosis therefore I am attending 3 different Consultants in Opthamology, Respiratory, and Dermatology! I cannot fault any of them though and was amazed at my first referral to hospital with a sore eye that the duty Opthamologist ordered all manner of tests, chest X-ray, bloods etc and asked a lot of non eye related questions. Therefore my diagnosis was pretty quick.
Google was great for me to find out more, and I found and joined a support group online, and I found out loads more info without even having to ask or participate.
It is good when you are trying to understand and cope with something to find so many people who understand the condition and see loads of things that they have found help alleviate symptoms.

Therefore I am sure this thread must be of help to you all, I would just urge some caution regarding posting a lot of personal details of your lives. Anyone can read what is on these forums, and as has been said on another thread recently, it doesn't take much detective work to find out who you really are. At least on official support groups the general public cannot read what you are posting, only registered users.

I'm off to my Opthamology appointment today fingers crossed my eyes are responding to treatment, I hope you are all having one of your better days.
 

lila22

Active Member
#38
GPs in general don't seem to know much about the causes of these autoimmune conditions, much less how to treat them.

I do empathise with you all as I also have an auto immune condition, although nowhere near as debilitating as ME and Fibromyalgia.
There is no one department that deals with my Sarcoidosis therefore I am attending 3 different Consultants in Opthamology, Respiratory, and Dermatology! I cannot fault any of them though and was amazed at my first referral to hospital with a sore eye that the duty Opthamologist ordered all manner of tests, chest X-ray, bloods etc and asked a lot of non eye related questions. Therefore my diagnosis was pretty quick.
Google was great for me to find out more, and I found and joined a support group online, and I found out loads more info without even having to ask or participate.
It is good when you are trying to understand and cope with something to find so many people who understand the condition and see loads of things that they have found help alleviate symptoms.

Therefore I am sure this thread must be of help to you all, I would just urge some caution regarding posting a lot of personal details of your lives. Anyone can read what is on these forums, and as has been said on another thread recently, it doesn't take much detective work to find out who you really are. At least on official support groups the general public cannot read what you are posting, only registered users.

I'm off to my Opthamology appointment today fingers crossed my eyes are responding to treatment, I hope you are all having one of your better days.
It's amazing how many others do suffer, good you found online support, when I first found out about ME I found a online group and was so comforting knowing I was not alone and other understood.
I will have my fingers crossed for you today and hope it all goes well xx
 
#39
What have you all found works the best?
I've tried immuglobin injections
Chinese medicine
No wheat/dairy
Reverse therapy
Cognitive therapy
Phisio therapy
Citalapram
Codine phosphate

I did find no wheat and dairy really helpful, I did this about right years ago after seeing a nutritionist but she has since moved abroad. I seen others but not as good and the diet she gave me was really hard so need some guidance.
X
Im wheat free, sugar free, (did you know sugar has huge effects on the immune system and there are some fabulous alternatives.) dairy free, organic, unprocessed. I finished physio yesterday. Finally got discharged after 2 years. I now walk and do Pilates, a lot of my symptoms are gone. Unless I eat wheat then they seem to come back and knock me out for a bit.
You should not get me started on this subject lol. It's something I feel very passionate about. Im trying to save up so I can study nutritional medicine.
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lila22

Active Member
#40
Im wheat free, sugar free, (did you know sugar has huge effects on the immune system and there are some fabulous alternatives.) dairy free, organic, unprocessed. I finished physio yesterday. Finally got discharged after 2 years. I now walk and do Pilates, a lot of my symptoms are gone. Unless I eat wheat then they seem to come back and knock me out for a bit.
You should not get me started on this subject lol. It's something I feel very passionate about. Im trying to save up so I can study nutritional medicine.
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I no, I need to find a nutrition in my area as I need a bit of guidance.
I do try and eat well and don't really have dairy. Maybe odd bit of goats cheese but I have alpro spread no milk.
Yes eating out knocks me for six every blinking time! So annoying but just shows the effect what we eat has on our body's.
I do plan on getting the sugar free book you recommended xx
 
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