I don’t talk about CFS/ME on here often, I’m not inspired to write about it, it’s boring and annoying and mostly I just want it to not be happening to me. Half the time I think perhaps I’m not ill, just neurotic. With no conclusive diagnostic test CFS/ME is a diagnosis of exclusion, if you don’t test positive for anything else and fit the criteria for the NICE diagnostic guidelines then you will be diagnosed with this little understood illness. I do, and have had a diagnosis for just over a year now, regardless I still regularly question whether I’m just being negative and that if perhaps I change my attitude I’ll feel better. So I plough on, hoping to batter my way through this illness and to good health, it doesn’t work.
I have muscle pain, in my legs, shoulders, neck, wrists and hands. I have headaches. Nausea which sometimes keeps me up for hours in the night. Tiredness, unrelenting constant tiredness then sometimes a wall of tiredness which demands that I lie down and do not move. When I’ve overdone it my whole body feels ill, head to toes and I can’t imagine that it ever felt good. Sorry to be so flipping whiny but I want to help people to understand what this illness is.
I feel old, old lady old. I want to sit, all day, in a nice comfortable chair, with Netflix and my husbands hand to hold. This is a mild form of the illness, for some sitting up would be to hard, Netflix too stimulating and hand holding painful, I am lucky.
Treatment offered, and I’ve been lucky to be able to access a specialist team, was group sessions on how to manage and work towards recovery. Advice on pacing our lives. I had six or so of these sessions and now I’m on my own. I’m trying to pace myself but it’s not natural to me at all, so I’m caught up in a cycle of rest, feel somewhat better, overdo it, feel horrible, repeat. With slowing down as alien to me as breathing water I’m not sure how to move forward with this.
So I’m tired, and it’s boring and being English I’m aware that I shouldn’t complain and should just get on with it. How it feels though, is consuming, hard to ignore. I feel like I’m carrying a very large rucksack up a very steep hill, and occasionally I drop the rucksack on the ground, sit down and cry. It’s blooming annoying and I’d really like to feel better now please.
You are not alone. I have had this for just over a year too, it’s very isolating and frustrating and I hate all the unknowns.
I wrote a post for BritMums on this recently.
Sorry to hear your suffering too Stephanie.
Complain away Ella and I hope tomorrow’s a better day for you xx
Thanks Jayne.
You are not on your own, lots of people care. We might not be very useful but we are here. X
I know and thank you.
Ella! I just read about CFS/ME in Swedish to realy understand what it is and I feal sorry for you. I read that it´s good to have rutins, a sceduele over the day (hope I use the right Word) if you have this diagnos. I Think you are very good with sceduleles; so ceep on! I´m Thinking about you and hope you will have some kind of a nice summer. Hugs from Ann in Sweden
Thanks Ann, hope you have a good summer too.
It’s totally understandable to feel this way, I imagine being in pain and having no energy day in and day out must get unbearable after a while xx
You are not on your own we just don’t meet. This is the first time I have looked you up in a long time so I think this is a message to me that we need to fight over purple pens and flip chart paper and do something crazy and fun.
I’ve done a lot of reading since we spoke on Wednesday and I think I can tick every symptom. Like I said to you, a non blogging friend had done a status on it two days before we spoke, so it was already on my mind and synchronicity that we spoke. I got back from the school run at 09:15 and have been sat on the sofa ever since – it’s now 13:53 and I have to jizz myself up into getting SOMETHING/ANYTHING done before I collect him from school so that I don’t feel a total failure. It’s odd. The tiredness means the sofa beckons my bottom like a magnet, yet then when I do get up I feel so STIFF from the inactivity that I then totally regret it. My lifestyle is very much go at 100 miles an hour and then fall down, but this malaise is meaning the fall down is becoming so much more common and frequent. What to do? xxx
Hi Liska, sorry that you’re also experiencing problems. I would recommend that you visit your GP, perhaps mention that you are thinking it might be CFS/ME, and ask for their advice. Good luck.