Thursday, 14 March 2013


"I'll write to your GP to let him know that we haven't really had any success" has admitted defeat..
He doesn't think he can particularly help me and I think he's probably right. I don't think I'm actually well enough to be trying to improve my strength at the moment. It's frustrating but I knew that this might be the case- it was worth a try though and I'm going to continue trying to improve things myself by continuing trying to work on my grip strength at home.

I'm meant to be starting physio with the CFS team anyway but I'm on a waiting list. And the waiting list is 3 months long.. Sigh. The joys of waiting lists.. I wouldn't mind but I've sat on this same waiting list before and I was only discharged from them in October after 18 months of being seen. Ah well. Gives other sufferers a chance to be seen though- I suppose I can't really nab all the appointments indefinitely ;)

I just want someone medical to be confident that they can do something, ANYTHING, to help and make things a bit more stable and manageable. But we don't always get what we want in life and we just have to deal with it.

CFS is complicated. A lot of people you come across, even a lot of medical practitioners, know very little about it. Some of them will be honest with you and ask (the good ones- my physio did actually fall into this category) and others will blag or try and get you out the door ASAP (the not-so-good ones!). I don't mind people not knowing and not having answers if they're honest with me. I do mind people trying to act like they know about something they don't. Trust me, if you're a medical professional (this applies to anyone actually) faced with someone with a chronic condition and it's not something you particularly know about- the patient will know about it- ASK THEM! They might not know the exact details you need but they'll certainly give you a good idea, and can tell you about it from their perspective at least. Don't assume they're the same as someone else with the same condition either- most chronic conditions are on a very wide spectrum of severity and there can be very different symptoms; 2 people with the same diagnosis can have a very different experience of the illness- don't jump to conclusions or make assumptions, ask whether the same is true for the individual in front of you. They're a person and everyone is different.

My abdomen is still uncomfortably swollen and I'm still nauseous. I've got new mid-back pain and had a new stabbing pain behind my left eye earlier (severe but short-lived). I've got aching facial pain with a feeling of pressure (feels like my face is going to explode), facial tingling and one side of my tongue is hypersensitive. My hands are painful and I feel exhausted.. A slightly worse than average day overall.

1 comment:

  1. Bless. you are so brave! the more i read the more i admire you!