Just need people who understand me to see how they cope living with CFS

Hello not been on here for a while.

Oh how crazy mine started same as you after child birth. People look at me like im crazy when i say it but its 100% as i was fine before then. 

I unfortunately havent found no medication iv actually come off sertraline which was for my anxiety. Im fed up with it all . Smiling when inside i battle everyday. I wish i new someone near me who had M.E who i could find a proper friend in as i do feel alone alot . Hope your feeling ok xx

And just to say be proud of yourself for all the work you do . I do 16 hours and struggle with that so good on you girl x

Hi Zoe... how's things with you? You mentioned knowing someone near you.. hard to say on here where you are.. I'm West Yorkshire.. long shot.. anywhere near? Hoping you having a few good days.. so glad you started this discussion.. kept me going whilst confined to bed for a good few weeks with so little understanding around me.. speak soon Jane x

Hi jane, i just wish i had someone to meet up with or go to their house to moan and know that they understand :-) im near not far from sheffield.

I stopped coming on then realised i just cant do it on my own no more. Iv no one to turn to its just rubbish :-) but .. got to carry on!! I have work to do a child to raise. 

How are you. How is your M.e overall. Is it really severe or do you get some ok days inbetween the bad ones xxx

Thank you for your kind words. Yes I just guess my body didn't like pregnancy lol. There is a rash you can get when you are in labor. I'm not sure which areas are all included but I had mine on my lower legs. It's extremely itchy. And the only way to get rid of the rash is to give birth. It goes away instantly. Well I had it the last 3-4 months of my pregnancy. All they could suggest is anti itch cream (which never worked for me) And the fact I went 17 days past my due date before they induced me wasn't fun either. Yup. I just tell people I had my daughter and was understandably tired but it never went away. My day revolves around plans of when I can get the next nap and how I can do things to get a longer nap (like showering before I go to bed so I can sleep longer before I have to get up for work.) 

People think it's depression or that I'm lazy. I tell them that's not the case. Something is wrong with me and since I do not know what it is I can't fix it. People think it must be lovely sleeping 14+ hours. Saying things like "That must be nice. I can only get 7 or 8 hours of sleep and once I'm awake I can't fall back asleep." I tell them it isn't. I never wake feeling rested. It's like being stuck in a jail cell with no way out! I don't have a life! I just want to be normal! If I can sleep ten minutes longer by skipping lunch I'd gladly do it! It's like a drug you're addicted to except if you were literally on drugs you'd know how to fix the problem. I remember in the beginning getting all these tests done trying to find the culprit for my fatigue and thinking " I hope it comes back positive. At least then they can fix me." I didn't care if it was cancer, a brain tumor, abnormal thyroid.... I just wanted an answer....desperately.

Im smiling to your comment but in a nice way .. the amount of times everyone around me said mine was depression . I ended up corrected each and every person and doctors and hospitals.. 

i said.. i am NOT depressed something IS WRONG.. when i am ok in myself i am fine but when the fatigue hits along with numerous of other problems thats when i cry amd SEEM DEPRESSED. ! 

Made me very angry but i just think whatever now and dont justify anything half as much as i used to . 

When you said you wished something would come back on tests i used to say to my mum if i take a turn or i die su the hospitals as i told you something was wrong lol .

Times many when people say how can you be tired youv been in bed all day .. ooooo so frustrating :-)

Very lonely to suffer with M.E at times thats what i dont like . I often wish something like you said would have come back on all the tests threwout the years but have to accept this is it. 

I still deep down cant accept it as i find it hard to think im 28 and what life have i got. Does it effect you daily or like every few days . Hope you are feeling ok x

Omg.  Yes.  I still secretly (for the most part wish it was cancer.  Then there would be a choice and then I won't be judged as lazy, privledged or flakey. The best one yet is my sister-in-law calling me a princess bc I don't work and get Botox shots for migraines.  

The fatigue is all day every day. Sometimes I'm so tired I wonder if I'll fall asleep and slip into a coma. I describe it like a huge hill I have to metaphorically climb. When I get up I'm at the bottom but as I move around I wake up. The moment I stop moving (ten minute break at work) I tumble down and have to start climbing again. Or I've used the wind up flashlight description. When I'm waking up I'm dead. As I move or start winding the metaphorical flashlight I "brighten" up. The moment I stop moving or "winding" I die down. And if I don't start moving it's game over. 

Hi. 

I asked a doctor that chronic fatigue was trivializing my illness and the medical proffesion in my part of the UK at least no longer use ME. I got my diagnoses changed to CFS with fibromyalgia overlap. If you tell people you have fibromyalgia it has less of a stigma attatched to it and most people dont know what it is. You can always say its what lady gaga has, lol. Seriously though if you can get your diagnoses changed to include fibro then you may have less hassle.

I hear you although I think ME is technically the most fitting and most thoroughly am descriptive term for what the disease really is and what systems are effected.  

I know!  My husband gets resentful that I go to bed so early!

I hope my message did not come across as getting a diagnoses for an illness they dont have but as i have all the usual symptoms of ME and i also get pains the doctor changed it straight away. I had only just met her as well, new doctor for me and she hardly asked me any questions. 

That is also my diagnosis. Although I was diagnosed with Fibromyalgia about 3 years before FINALLY being diagnosed with CFS

My doctor calls it a CFS/Fibromyalgia overlap.