Friday, 18 February 2011

This is my Today

I ummed and ahhed about whether I was going to post this blog post today or if I was even going to write it. You see I thought it would be a bit too depressing for my blog, but then considered that it's part of my life and quite a significant part at the minute, so here it is.

Ive been really quite angry today. This has made me quiet with my children and withdrawn. I don't want to hurt anyone when I'm hurting.

It's the pain. Not just the pain, the exhaustion is pretty upsetting to be honest. The pain has been in my chest today. Round my left collar bone area. I'm tired and I'm hurting and I have an appointment in just over a week with the rheumatologist. A man who barely paid me any attention when I first went, yet managed to diagnose me with fibromyalgia. Now he's looking at me for ehlers danios syndrome at the request of my gp. This appointment is now playing on my mind

Will he pay any more attention than he did last time, will he even look up from his note pad to even see what I look like?

Will he listen to all the things I have to say or ask me the simple questions? Am I hypermobile and do I have pain? Yes to both, but eds comes with more and I have more to say. Yet I feel that I have to talk at a rate of knots just to say what I want to say before he looks up and sends me out the door.

If this eds I want to know. I want to know for me and I want to know for my son.

I don't want to be fobbed off anymore. But what if he doesn't fob me off. What if he says yes, it's EDS. I have my answer. Will I then give in to it? Use it as an excuse or will I be able to then get up and fight it and live my life? What will happen to my career?

I don't want this, but I don't want him to say its not either. If he says it's not he won't provide me with alternative answers. He will look at his notebook and say goodbye. Last time he gave me a leaflet and told me to look it up on the Internet!

Today I am tired of being tired. Sick of the sick. Its making me angry and frustrated. I don't enjoy feeling this way and I know others don't want to see me this way or read this and this makes me even more frustrated.

This is my today. Hopefully tomorrow will be better


  1. Ew, what a crappy Doctor. Is there another one you can go to? I hope so because whatever the diagnosis, you need someone who gives a crap and looks at you. Honestly, I'm mad now too and will gladly hop over the pond to kick that doctor for you!

  2. Sorry that you have to suffer a crappy dr! I think that what is important is that this time you are not going to settle for less than a proper answer and this will help. Push him to make sure he does his job properly so you can get the answers you deserve.

  3. I have a very similiar situation. I don't talk about it on my blog for much the same reason, but sometimes we all need to get things off our chest.

    My GP has been useless and after two years, I've given up.

    But on the upside, you're not alone. Thanks for stopping by my blog today. Your comment made me feel sunny inside. =)

  4. Thinking of you and hoping your doctor gives you the time and attention you deserve.
    One of my good friends went through similar frustration when she was diagnosed with RA. She ended up finding a lot of relief through acupuncture and with a naturopath.

  5. Patricia - My Gp has said he will refer me to another consultant of my choice should I not get the answers I need from this one. Fingers crossed he listens to me this time.

    Pippa - I've been thinking about this, about whether to start the appointment telling him I wasn't happy with how it went last time or if that will just put him offside and make everything worse. I think it will be a decision made on the day...

    India - Thanks for commenting. I don't think you should give up. It took me two years to get a diagnosis for a poorly functioning gall bladder which I had removed last year. I don't think they expect to see the unusual in their offices so if it's not simple, they simply think we're making it up. It's your body, make them listen.

    Sunny is good. Thank you :)

    Carrie - If and when I get a firm diagnosis I will probably look to complimentary therapies to help me deal with the symptoms. Thank you for your comment.

  6. Oh I'm so sorry. I just stumbled across your blog and can feel how horrible your day was and how much pain you were in when you wrote this. Good luck:)

  7. Thank you Lindsay, I'm currently counting down the days to the appointment and I'm feeling very distracted in the wait. I will be glad when it's been and gone. (I think!)