It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

H/T Living With Bob blogspot

I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.

I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home.  Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.

She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.

I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.

So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.

This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better.  I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.

I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.

Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.Hydra

But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.

If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?

PS Dysautonomia Prison has changed sites so this is the new site place


5 responses to “It’s okay to be angry and frustrated.

  1. I went through a time, and still sort of am, similar to what you are saying. I felt I needed to always be the fighter and never show how emotionally tolling being sick and always fighting was. If I felt bad for myself, I immediately felt guilty because there are people out there with cancer. I thought by expressing my anger, grief, pain, and sadness to anyone but my pillow at night, I’d be worrying and letting down those I love. I’ve found it just isn’t true! I wouldn’t expect anyone else in this situation to always be a fighter and never show any painful emotions, so why do I expect it of myself?

    Also, I was diagnosed in less than a month once we realized POTS was what I probably had. I think it’s horrible it is taking this long for you to get diagnosed!

  2. It is sick and sad that it is taking so long for a proper diagnosis and any kind of worthwhile treatment. how utterly horrible that your NHS has let you down once again so badlly.

  3. Thank you both.
    Jackie – yes the letting people down thing. I had a rather tearful conversation with my dd who had to rescue me from the cooking when I just couldn’t stand up and think stratight. She is so good in taking over here; and I feel so horribly guilty. She said “if I felt trapped Josh and Alex would certainly know about it and they would tell you.”
    Never thought of it like that.

    And Shana, yes the NHS is a nightmare. I really think the Prof would help, but the system is set up to prevent it. If he doesn’t even see the ECG for five weeks! (got the thing to 132 so it should be a slam dunk dx for the POTs it’s just the flavour of POTS that the issue)

  4. Hi! I’m new to following your blog…and I have POTS. Your statement – “But I don’t think I should have to fight every day,” stuck a chord with me. This is exactly how I feel! Many days, I feel resentful that I have to struggle and right through each day.

    • Hi crshore – thank you for subscribing.
      I understand exactly what you are saying. It’s like being in the trenches. We didnt ask to be here and the trudge through the disease can be so hard. It’s not surprisng we get resentful.
      I hope that knowing you are not alone with this. We are out there- even if it’s only over the internet. And we get it.
      Take care.

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