What’s In A Word?

If you’re like me, you’ll struggle to find the word. You might just hit a blank, and not for the life of you be able to come up with the word you want, or maybe you might blurt out a completely different word than the one you intended. Where did that come from?

It’s called brain fog. Or cognitive dysfunction. Or cognitive impairment. Maybe specific to your illness, it might be fibro(myalgia) fog or maybe chemo(therapy) fog. I’m sure there are others related to other illnesses. I battle with brain fog thanks to two chronic illnesses (fibromyalgia and Graves’ Disease).

They said it might be a problem when I have a flare of my fibro, but actually, it is a constant for me.

I used to be paid to talk. I was employed to train people how to be managers, and so I was either in front of a classroom, talking all day, or other days I might be on the telephone for most of the day planning training programmes.  Even outside of my work, I talked. Leading groups.

I spoke fluently, without hesitation. It didn’t worry me whether I was speaking to one person or 200. Much of my speaking was off-the-cuff and I would only have minimal notes to guide me. I was good at this. It was my chosen career until severe mental illness cut me down, but that’s another story.

Now, I struggle to string a sentence together. I stutter, I hesitate, I lose the words I want to use, or completely wrong words come out of my mouth. It doesn’t matter whether I speak to one person or a group, I am constantly battling my brain to come out with the right words at the right time.

I feel like an idiot. I imagine what people must think of me. They would have no idea that I am actually an intelligent person because I really do sound like an idiot.

Worse yet, is speaking to people for whom English is their second language. Most of the staff in the dementia facility where my mother lives are immigrants. My problem is that I struggle so much to say what I want to say, but if they don’t understand me, I have to start all over again. They are trying to guess what I want to say, and I get flustered and my speech gets worse.

I am so frustrated by this today but it is like this every day. My inclination is to isolate myself, so that I don’t have to speak. But I can’t do that. I don’t want to answer the phone and actually fear that it will ring.

This is a constant problem for me. Anxiety is up, so is depression because I am so frustrated with the simple task of speaking. For those who think I should be out there working, I couldn’t work. I couldn’t do my job, because my job is talking. I retrained as a social worker, but wouldn’t manage to do that either. I just constantly stumble over my words. (By the way, there are other substantial barriers to me working, but my speech is just one more invisible problem.)

And that isn’t the Cate I always knew. What the f*ck happened to her?

Thanks for reading

 

Cate

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My Christmas Wish?

Is it too early to be publishing my Christmas wish? Surely not? My neighbours have had their rather interesting Christmas decorations up since 1 November, so surely I can get away with just one little wish.

No beating around the bush on this one. I want a new medical team. Yes, a whole team. I’m sacking the lot of them simply because I don’t trust any of them to have my best interests at heart, nor do I think their expertise are up to the challenge of my chronically bad health.

Yes, that is harsh. I know, and my health professional friends will be saying “give them a break!“. But really, that’s what I’ve been doing for too long. I can’t do it any longer. I can’t pretend I didn’t notice the inaccurate information and that I haven’t been treated as a person with unique needs, and not just a number.

I’ve had enough!

In the past six months, my need for good medical advice has been growing. By this stage, I had hoped to be well underway for getting treatment for identified medical issues. I thought I knew what was going on with my body, but it turns out that I don’t and a big part of that is down to getting incorrect information from my family doctor (GP).

I have an autoimmune condition called Graves’ Disease. I first had it diagnosed in 2010, and it has been assumed that I got it as a result of taking the psychiatric medication Lithium. At that time it was treated with medication and I eventually went into remission but I always knew it would probably come back at some stage. This year, I had all (okay, not quite all!) the signals that my Graves’ had relapsed and I have been waiting to see a specialist (an endocrinologist) for a while. I finally saw him last week.

In preparation for my appointment, I was sent to have a thyroid scan. I was asked several times whether I was taking anything with iodine, but I knew I wasn’t allowed iodine so was confident I wasn’t.

Except for a sneaky multivitamin, my GP has recommended I take some weeks earlier. Knowing I can’t have iodine I double-checked with the GP about something listed in the ingredients as “potassium iodide“. She told me (actually in writing via a text message) that “potassium iodide isn’t iodine” and so I could safely take the multivitamin. I thought that was the end of it.

Fast forward to last week and I am at the specialist appointment. He showed me the scan taken about a month earlier as well as my last scan in 2010. I expected they would be the same but they weren’t. He told me that this current scan doesn’t show any Graves’ Disease. He never said how I could have it in 2010 and not now, and because I was busy thinking about how sick I’ve been in the past months, I didn’t think to ask.

The consult went on until somehow I thought of the potassium iodide (which I had always thought was odd it wasn’t iodine). I think he asked to confirm I wasn’t taking any iodine. He was quick to tell me that potassium iodide is, in fact, iodine and I should never have been taking it.

Even more, because I had been taking it all of my blood tests and the scan would be wrong. Actually, he was pretty angry. There wasn’t quite steam coming out of his ears, but just about. The consultation came to an abrupt halt. I would have to wait three months for the iodine to get out of my body so that they would have some show of determining exactly what is going on. Meanwhile, I was clearly wasting his time!

I left feeling really angry at my GP giving me something that must surely have been pretty basic information. It was just one more time when she had made a mistake in the 18 months I have been seeing her. It’s time to find a new GP. One that will see me as a unique human being with needs that, while they might not matter to her, they matter to me a lot. More than once I had been her “first patient” with a particular issue. This must have been her first GP job!

But the story isn’t over. Less than a week later I received a copy of the specialist’s report and discovered that he had determined my eye problems over the past six months were also not Graves’ related. He hadn’t said this at the time, and I assumed that matter would be left to the Ophthalmologist appointment in two weeks time.

Now I am left with the big question:

If Graves’ is not causing my eye disturbances
(think chronic pain and double vision) then what is causing it?”

I find this rather disturbing. Of all my health issues, I think it’s fair to say that my eyes are my biggest worry. What is going on? And what will happen next? I have this probably irrational fear of being able to cope with everything else but “please don’t take my vision away!”. Ok, now I’m getting anxious!

Both of the specialist’s determinations  – no Graves’ Disease and no Thyroid Eye Disease may turn out to be wrong when in three months time the iodine is gone from my body and he sees me again, but all of this is unsettling. Autoimmune diseases don’t just vanish, so I don’t accept what he says. And my eyes? Well, apart from being constantly reminded that ‘something’ is going on with my eyes but who knows what? I think to say I am unsettled is an understatement.

Back to the point of this though, I’ve had it with doctors. I want new doctors who care about my concerns, know what they’re talking about and stick to their speciality base. I want to know my doctors have dealt (successfully) with this condition before. I get that I have multiple conditions, both of physical and mental nature. I’m not a patient who will come once a year for a flu jab. I have had great doctors in the past. I have also had terrible one’s, including one who has recently come out of prison having be charged with sexually abusing patients. I know that good doctors exist. I just want one for me. Is that too much to ask?

Oh, and I want a new dentist too. But that’s another story, for another post.

Thanks for reading

 

Cate