flat on a pancake day. Beginning Lent with offering up LOL.

Saw the GP this morning. He is a good man and very sensible, but it seems I have more hoops to jump through.

The ECG showed minor changes but nothing to get fussed about and the ultra sound isn’t even through yet. The chest x-ray was clear. No answers there then. The Doc is referring me to a lung specialist next. He’s changed my inhalers and I have to go back in 4 weeks to see how that helps and have to go back in three weeks for (more) bloods. Perhaps the heart ultra sound results will be in by then too.

I don’t think I’m wheezing that badly but I am very breathless at the slightest moving around. Although today was a good day, in all honesty I am beginning to realise that what I call “good” is actually not all that good – it’s just better than when I have a chest infection (which come about every 6 to 8 weeks so I’m due one in a fortnight lol).

He talked about ME. I don’t have a dx of ME as yet, although  ‘tween you and me I’ve suspected I had ME as well as FM for some time. I just didn’t want to have that dx. I told the GP as much and he promised I wouldn’t be told it’ “all in your head.” He actually understands and even accepts that ME (and frankly probably FM) are rooted in a virus. I told him I had seen it linked with Epstein Barr and HHV-6. Unfortunately I also know, from reading into this finally, that heart problems are common but difficult to spot. The NHS just isn’t set up for a disease like this.  (Readings Osler’s Web is quite an eye opener- showing why it is that those of us with these horrible chronic diseases get left to it; politics overcoming medicine. Hippocrates must be spinning.) I also have to admit that I’ve seen how ME can go with people and it quite frankly scares me.

The sad fact is, in all the time I’ve been ill no one has looked for a virus. I don’t even have blood count results on my notes.  I have a feeling, that along with others with FM and ME I don’t tick the right boxes and so must be left like this, even though I am fortunate enough to have a good GP. Of course so many of my results have gone walkabout that who knows what I have and haven’t been tested for over all those blood tests.

I am truly fed up of it all. No answers and more doctors and hospitals ahead. So I’ll being doing Lent with gusto. I’m sure it’s good for me in some way, right now can’t quite see how though.

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4 responses to “flat on a pancake day. Beginning Lent with offering up LOL.

  1. Dear Michelle,

    Your courage and perseverance are an inspiration. Your dedication to home education is also quite amazing. A promise of prayer for some enlightenment with your treatment and a Lent that is not without some consolations.

    J

  2. Just sending a hug Michelle, I’m thankful to be spending a little less time at the hospital right now (thanks to a central line port that’s been put in, so I can have my IV fluids at home)… I know how all the visits can just make life so crazy… Lord, have mercy… hugs from my side of the world…

  3. *hugs* So sorry to hear this. Good luck with everything.

  4. I am not sure what ME is. I hope they can. get to the bottom of everything and give you the right medications to help.

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