I’ve had a difficult week . My chest has been bad so I’ve been getting breathless quickly on movement etc.
It’s been one heck of a journey the last 7/8 years .
My symptoms began at the end of my last pregnancy ,I just never seemed to recover after having him.
Constant exhaustion muscle pain, breathlessness , foggy brain ,powerless voice etc etc
Probably the hardest part of dealing with a long term illness is the mental and emotional impact it has on you.
I’ve never been one to have lots and lots of friends as I’m not that way out .
Very quickly you lose the friends that you have made through doing activities , which makes sense if you can’t do them anymore. You have the we’ll pop round for a brew but it doesn’t happen.
The thing that hurts most is when you have people that you considered friends tell you that it’s mind over matter, suck it up. You could do it if you really had to etc. Maybe working within the dwp has made them cynical I don’t know but believe you and me if it was mind over matter I’d be running marathons right now.
It’s a lonely path. I have got a few friends who are by my side who still remind me I’m in there somewhere and are very special to me . Those few friends are gems . You all know who you are. Some I don’t talk to much but I know they are there and me them.
I stopped coming on social media for a long time because it irritated me. I have only started sharing my story to raise awareness about the lack of support in #Fleetwood #wyreandfylde for families in the same situation as myself. Some of those ex friends believe I’m self absorbed looking for sympathy. I’m not looking for sympathy I’m looking for support.
This is one of the reasons if people that are supposed to have experience dealing in invisible illnesses as a vocation tell someone to get on with it what chance have people got.
It needs to change. Attitudes need to change.
I’m not sure I have got much more in me. The social media thing although I’m raising awareness it’s also raising a few ugly scenes.
Really appreciate someone to pick up on this and carry on getting support for the area.