Is a diagnosis necessary?
Posted , 5 users are following.
I just don't think there's any point anymore.Does it ever get any easier? I just watched Jennifer Bread film(unrest) and from what I saw was, this illness can last year's, I don't want to live an empty life. I can't have sex with my husband,go on holiday, play with my grandchild or even travel to go see her. I have no friends left, my family don't understand. How do you cope? I can't do this? I don't want a life like this. Is it better to do nothing all-day and at least feel semi normal or push myself and feel something and pay for it later? My husband hates me for destroying his life and making him a carer. I have this condition, is there really any point. This condition has been about since the 20s, will they really be able to make a cure, not in my lifetime. Sorry I'm just ranting. I have no one else to talk to.
1 like, 3 replies
elenamango carol40017
Posted
Hi Carol
It's incredibly difficult isn't it? Trying to cope when it feels like this illness has stolen your life.
I've have CFS/ME for about 3 years now (not too long compared to some people), and what I've found is that although it hasn't gone away there are ways to manage it. For me that meant giving up walking.
My diagnosis, although frustrating, meant I could access the specialist CFS service near me. They gave me some excellent advice about pacing (not Graded exercise). The diagnosis also allowed me to access pain medication, to allow me to sleep a little better.
This condition tends to lead to depression, and if you feel that may be the case with you, I would suggest trying to get some support for this.
One thing I have learnt though, is that if someone loves you, they would be able to handle the illness without hating you. Maybe you need to speak to your husband, and maybe see if there's a way to help your family understand (eg one of my relatives didn't understand what I meant by nerve pain, but he had experienced shingles, so I compared it to shingles pain. A young relative didn't understand so I told her that I'm like a phone with a broken charger, sometimes I wake up and it's charged 50%, other times I wake up and it's not charged at all)
Take your time, be kind to yourself and rant however much you need to.
lisa00385 carol40017
Posted
That is very sad to hear you feel so alone. Have you seen a therapist? I saw a health therapist that dealt with chronic health issues. I was very helpful. This illness can be very isolating. It's dangerous to think your the cause of everyone's unhappiness. That's crap!! It does help to create some structure in the day. Going to bed at a certain time waking at a certain time. Get dressed ... Meditate, move some, do something. We have to know our value. And grieve those losses. What you think and feel is real and of value. Too damn bad if they don't get it. Stay away from people that want to steal your serenity. We are not responsible for others reactions. Shake it off!! Yeah this sucks but I do believe we all do our best to deal with this. Hey if I want a distraction all I have to do is turn on the news (I live in the US) and see how dysfunctional things are it makes me want to scream everyday. My life isn't so bad.
catherine41708 carol40017
Posted
Sorry Carol, I know how horribly isolating this illness is and how desperately hurtful it is when people, especially family, don't understand.
Do try to get a diagnosis. For some people the underlying cause of their ME can be identified and treated, and then recovery can happen. For others, support and services can be put in place.
Hang in there.