Suffering no doubt, can't wake up for 5 minutes without feeling sick. It's so hard, especially where no one understands. At least you have the forums where you can cry your eyes out, and no one gives you hell for doing so. )))
Suffering no doubt, can't wake up for 5 minutes without feeling sick. It's so hard, especially where no one understands. At least you have the forums where you can cry your eyes out, and no one gives you hell for doing so. )))
Sufferings the perfect word for it, CFS is torture. Yeah, I'm so happy I found out about the forums. Do you ever go out at all?
Not really. I do things for my family when they ask for my help, go to the store, take my mom to her doctor appts, I always have appts, me & my daughter go to the mall sometimes, once in awhile I'll go visit family or friends, but it's not often. I haven't worked a day since I've been sick. I went to beauty school, dropped out, medical assisting, hung on for 2 mths and dropped out of it too. This illness has overpowered me and I guess I let it. Most my days are spent laying around, I have trouble just getting housework done. I need to exercise and can't, I just don't have the energy. I have to make myself do anything that I do. Sometimes I don't even have the heart to get up and try. It's so hard waking up to every moment you breathe, nothing but pain and fatigue. I'm a serious mess with this. I'm just hoping the rhematologist I see in april will give me immunosuppressive medication that will actually do the trick. I doubt I'll get so lucky, but you have to hope it's going to get better, I can't stand thinking otherwise.
Yeah... I'm looking for friends too. For some reason all the ones I had disappeared. They think I'm crazy. I wish... Then I could have imaginary friends in my head. The cat still likes me. Actually the cat LOVES me now. I'm always here to sleep upon. I want friends who will come visit me. Real live ones. I don't know about online friends. I miss real human interaction. But I guess I'm not too much fun and my obvious neurological problems freak people out. Sometimes I step outside around dusk to scare the next door neighbors kids. They are terrified of me... the neighbors think I lost my job and developed a drinking problem. Haha. Well I had this beautiful garden and now it's weeds... What other explaination could there be?
The following user gives a hug of support to katyhilton: melody1 (04-18-2011)
hey, Im new too, I just signed up! Ive also had cfs for over a year now. Im sorry that your suffering with this, it truely is horrific at times. Im also looking for people that also have it that understand what its like as I find my friends dont understand at all. I thought at first maybe its becasue they are young (19-20) and never heard of this illness before but out of all my family aging from 3-84 only my mum understands. I hate explaining the illness to people as well, not just because i find it hard to do so but becasue i know that 9 times out of 10 they dont understand and I'm left thinking do they believe me or think im just lazy and crazy?!
I think part of the problem with others understanding is that if you look for info online about it - there is a lot of conflicting information. The US health department says there is no known cause and it is only diagnosable via assessment of symptoms and the ruling out of a number of other things. Well go look what Canada, Australia or the UK have to say about it. It seems to be quite a dispute in the medical world. My doctor gave me a list of causes. Obviously she is on a different wave length than out government health officials. I have to say I think she is correct and follow her treatment plan. I like her "we are gonna kick this in the butt" additude. I had 2 doctors tell me that there is nothing I can do to fix it and offer me antidepressants. No way. Not gonna work for me. Anxiety - yes. Frustrated - yes. Anxious - yes. Tired - yes. Confused - yes. Depressed - NO.
This is true, I don't understand why its seen as a made up illness when there is scientific evidence that backs it up, and the national institute of health in the uk support it but having said that after showing friends infomation about cfs that explain it they still don't get it! I don't believe that there is enough information out there explaining this illness, when I became ill with it I didn't know anything about it let alone the fact that it exsisted! I have found that the doctors and specialists in the uk have been really supportive and helpful but there is only so much they can offer. I have found that acupuncture helps me manage the pain and I feel I have a bit more energy since I started it I would recomend it to try if you can if you haven't already.
The following user gives a hug of support to emmacharlotte: melody1 (04-10-2011)
Hi
I have been diagnosed with CFS over 25 years ago. I was able to receive disability but lost my love of teaching. At first I was taking a prescription for energy plus sleeping medicine and anti depressants inaddition to all the cfs association advised for vitamins etc. and participated in some trials. I really have found only the first energy medicine helped for the energy but since 1996 I could no longer obtain it in the USA. Since that time, because I am a keep-going person, no matter what, I have had serious injuries. I have had a prolapsed rectum- removed 6 inches - caused by L4 & L5 fractures causing spinal stenosis . My right side of my body is shifting and now causes me concerns because my left ribs are down to the hip bone. I am not only tired all the time and always pain in my back but I have lost all freedom to even go to the store. I wish anyone with this disease all the love and God bless you.
Looking for friends. 
Re: Looking for friends. 
