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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Becoming Mindful

I admit to being a reluctant participant. While I understood the principle of mindfulness, I had no desire to make it part of my life. I know, I’m not meant to say that. But I have.

Maybe it was the fact that it was recommended to me by so many people in so many places. It would help my depression. It would help with anxiety. It would definitely help my Borderline Personality traits and would help my dissociative disorder. On and on have been the recommendations. Apparently it would help with almost any disorder. Don’t get me started on how mindfulness was meant to help with chronic pain. The only thing was that if someone recommended something to help me, I was more than likely to do the opposite.

It’s not that I didn’t want help. I just pushed away the help that came my way. There have been too many recommendations from all types of quarters from my (ex) mother-in-law to the best of psychotherapists, psychiatrists and pain specialists. Most things recommended actually didn’t work. Some have actually caused me more harm rather than good. I just didn’t want to know anymore.

So any time someone mentioned mindfulness or a programme including aspects of mindfulness I just gave a non-committal answer and quietly backed away. I didn’t want to know. That was until recently.

Before I go on, it’s important to clarify just what I’m talking about when I say mindfulness. So here’s a definition from my fav Oxford Dictionary:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

I got thinking one day about what is a daily activity for me. It’s one that you might be surprised I am linking to being mindful. Most days I spend time with my mother in the secure Dementia Care facility when she has lived for the past 15 months. Not only do I spend time with my mother but also the twenty-odd other residents and the staff. They have all become a bit like family to me.

It occurred to me that when I go through the locked doors, I leave everything behind me and focus on what is happening at that moment. I can’t focus on any of my stuff. That gets left at the door because Mum needs my complete attention. She is also not well enough to be able to give attention to my stuff. It’s not exactly mindful meditation, but it is focusing on the moment.

Then today I was reading a blog by a woman with early-onset dementia. She said:

Once you’ve got your head around the diagnosis, don’t dwell on the losses or the future as you have no control over each. Instead enjoy this moment as there are still many adventures and laughter to be had”

She made me think that aside from finding a mindful approach the only way to cope with visiting my mother, it was also an approach for those facing diagnosis of illness. It’s far from an easy illness, or an easy place to visit, let alone be there day after day. But there are fun moments. There are adventures to be had. I leave my troubles at the door and venture forth into Mum’s reality. That is all that matters for the time I am there.

While those thoughts have been gradually forming in the background of my mind, I almost literally stumbled a few months ago onto a more conventional form of mindfulness through meditation. I was truly desperate to quiet the tinnitus in my head one night. Having bought a new phone I had lost the app that I used to use a night for nature sounds.

Instead, I came across the app Calm which offers mindfulness meditation. I was listening to it before my rebellious mind had a chance to say no. What’s more, I found the sleep story I listened to, was quietening my mind, focusing on one thing. Now.

For as long as I remember, I have had trouble with over-thinking while I am supposed to be going to sleep. It has been like an automatic switch that pings me into thinking and worrying about everything. As a sufferer of anxiety and Post Traumatic Stress Disorder (PTSD) I didn’t have a hope of getting to sleep until I finally collapse in exhaustion. Using sleep stories to focus my attention, I am getting to sleep much quicker and not becoming anxious about the whole night time and sleep thing.

Having found mindfulness useful in sleep I have started using meditations offered by Calm. Yes, really. Me. I admit I have been amazed at how calm I can be after meditating and how it helps me throughout the day.

But I am slow to change my daily routine to make sure I build into each day some time for meditation. I also still find myself amazed to even be going here. Me? Mindfulness? I would have said never. Not for any really solid reasons but simply because I had got a thing in my head and simply wasn’t going to go there.

Well, now I am.

I finish with a rather long quote, but one that I wish I had read, and had the willingness to take on board, many years ago:

“I’m simply saying that there is a way to be sane. I’m saying that you can get rid of all this insanity created by the past in you. Just by being a simple witness of your thought processes. 

It is simply sitting silently, witnessing the thoughts, passing before you. Just witnessing, not interfering not even judging, because the moment you judge you have lost the pure witness. The moment you say “this is good, this is bad,” you have already jumped onto the thought process. 

It takes a little time to create a gap between the witness and the mind. Once the gap is there, you are in for a great surprise, that you are not the mind, that you are the witness, a watcher. 

And this process of watching is the very alchemy of real religion. Because as you become more and more deeply rooted in witnessing, thoughts start disappearing. You are, but the mind is utterly empty.

That’s the moment of enlightenment. That is the moment that you become for the first time an unconditioned, sane, really free human being.” 

― Osho

Thanks for reading!

 

Cate

Here Comes The Sun

This week you may be thinking things look a little different around here. Even though this blog has just begun, I realised almost immediately that things were just not quite right and that I needed to do some tweaking. And so I did.

The theme got changed first. Sometimes it’s hard to tell if a theme is going to work until you actually work with it. It didn’t, and I’m hoping the new theme you’re seeing will work for both you and me a whole lot better.

Then I needed to incorporate some new images to make everything ‘just right’. The first one, the wings, is one you will have already seen on my first post. I liked it so much, and some readers told me they did too, so I built it into the look. Remember wings are about flying. Yes, I know you could work that out without me saying it but flying really is my favoured superpower. I want to be sure that those who are giving out superpowers remember which one I want. What’s more, there is nothing better than getting on a plane and flying up above the clouds.

But more importantly, living with chronic health issues does mean taking that extra step, to see if we can fly in spite of those issues. I want to have these wings right in front of me when I’m looking at, and working on my blog. I do have wings. And I can use them.

sunrise

The second image I have added is about flying too. I wanted to add this image because it is a picture of a sunrise over the Pacific Ocean, taken in Kaikoura, a little under 200kms north of  Christchurch, where I live. I just love seeing the sunrise from anywhere but there’s not much better than seeing it come up out of the sea. Wow, it really does get my heart rate up and reminds me that I’m alive. I am so lucky that for me it is only a 10 minute drive to the ocean to see a similar sight.

A few years ago I was flying over Australia, heading east towards New Zealand. The flight was actually from Bangkok and it happened to be early in the morning. As a fluke, I was seated on the side of the plane (with a window seat) that enabled me to watch the sunrise – for literally hours. You have no idea the joy I felt. Actually, it was perfect timing because for most of my flight I had been feeling dreadfully sad, having left a close friend behind. It was one of those ‘wow’ moments I will never forget.

It’s not important what you believe about where nature comes from and who governs it, but whoever it is really gave me a gift that morning. I had an almost eight hour long, perfect sunrise. One thing that I believe is that sometimes we get gifts like I got, at just the perfect moment. We get them for a reason. I would soon be facing a great heartbreak (no, I’m not going to go into the details) and even though I had no idea of what was ahead of me this eight-hour long sunrise really was a gift I could hold onto when the going was going to get tougher than ever.

This blog is me. It is my journey with chronic illness. It is my journey of life. While the original images and themes used represented me, I came to the conclusion that wings and a sunrise were so much more appropriate to the theme I was building right from the name of the blog.

I hope you stay with me on this journey. There is much to come.

“At the moment that everything goes dark, the sunset in front of us becomes the whole story. But if we find courage enough to wait until tomorrow morning, we will suddenly come to understand that in reality yesterday’s sunset was only half of the story.” 
― Craig D. Lounsbrough

Thanks for reading

 

Cate

PS. This image of sunrise at Kaikoura, on the east coast of New Zealand’s South Island, is by Charlie Evans, Nelson http://www.kiwiwise.co.nz

Hopes For Another Year

What are you doing tonight? What I mean is, what are you doing for New Years? The great celebration of New Year’s Eve. It is great, isn’t it?

I’m not so convinced, but then you could just say I’m old, down on myself and I have few friends to spend it with. Any number of those might or might not be true, but for a long time now, I have been less than impressed by the ‘great’ New Year’s celebrations. Please, can’t we just skip to February and carry on as if nothing is different?

New Year celebrations are great if you’re twenty-something, physically and mentally healthy, have money in your purse, have mountains of people you want to spend that occasion with, and while I’m at it, you’re probably an extrovert.

Am I any of those things? The short answer is no. And perhaps that’s my excuse for planning to go to bed tonight, at the usual time (early by most people’s standards) and if I wake (get woken) up at any time while it’s still dark, my cat, Hobbes will have a lot of explaining to do simply because he’s the usual culprit (other than just normal insomnia).

Before I go on, it’s important to point out just what would happen if I didn’t do that, if I stayed up until 12.05am, or even say, 2am. I would be very likely to spend at least the next few days in bed in an unreasonable amount of pain, not to mention fatigue. And my brain would turn even mushier than usual (brain fog).

It’s just not worth it to stay up that late and have a change of routine. I have to spend too many days in bed as it is, the last thing I want is self-inflicted New Year celebration pain/fatigue/numerous other symptoms.

Health has been a determining factor in New Year activities for more time than it should. But that’s not about to end. My chronic illness is in it for the long haul. But even before that, I struggled with this occasion.

It’s really hard to celebrate yet another year when you’re suicidal. It’s even harder when mental illness has turned life to hell and getting through the next day seems impossible without facing 365 more days. It’s just not even a bad joke. It’s beyond thinking to consider that another year is ahead, and because you might be depressed in amongst other illnesses, you can’t bear to have another year like the one you’ve just had.

I saw a meme on Facebook yesterday that loudly proclaimed that 2018 would be a better year. Really? Who said? How do you know that 2018 will be a better year? Yes, I guess we can hope. And hope is all important, especially on this occasion, but what if 2018 is a worse year? Who’s to say it won’t be?

In her (and my) younger years, my mother used to like greeting her family first thing on New Year’s Day morning with a chirpy “Happy New Year”. That’s fair enough, isn’t it? I should add that she wasn’t out late celebrating the night before, and she didn’t drink so wasn’t nursing a hangover.

Lots of people will be saying ‘Happy New Year’ on Monday. I admit that I cringe every time I hear it. The first year I was suffering from Major Depressive Disorder and was quietly (I mean I hadn’t admitted it to my parents even though I was staying at their home) desperately suicidal she was a bit stuck. And so for the next following years (too many to count), she would skip the “Happy New Year” and give me a “Well, I hope next year is better than last”. You can’t argue with her thinking, but I didn’t want to even know I was facing another year. “Mum, can’t we just skip this and get on with breakfast?”

My mother hoped that the next year would be better, and I can look back and be thankful that she hoped on my behalf because hope was completely beyond me. It’s funny (okay, well not really at all) that I am left thinking about the year ahead in terms of both my mother and myself. This time I need to hold the hope for her.

I can say with certainty that because of Alzheimer’s Disease, 2018 won’t be easy on Mum. It’s a disease that just keeps getting worse. There’s no chance of recovery and there’s no chance that 2018 will be a better year than the one we’ve just had. The disease will continue to destroy her, bit by bit. There will be less and less of a functioning brain. How do you celebrate New Year when that is ahead of you?

My hope for Mum is that her suffering is eased by the love of those around her, even those who she no longer knows. My hope is that she won’t feel alone or scared. My hope is that she will have peace.

I’m inclined to think that those hopes were something of what Mum has hoped for me, particularly in my many years of disabling mental illness. What is sad is that Mum and I didn’t have, in those years, a relationship in which she could share that with me. We weren’t close, and she and I both knew that much of what she might try to say usually ended in harsh words. It was safer to keep the silence between us. Thankfully, our relationship has changed, although too late to have those conversations.

Mum no longer comprehends that I struggle with illness of any sort. When I can’t visit her, I tell her why but she doesn’t remember the past years nor the journey I have been on. That’s probably a good thing (if any good can be found in her suffering). Maybe it means that she can join in the New Year celebrations at the dementia care facility where she lives. If she can have hopes, maybe she can hope that 2018 is better for both of us. She doesn’t understand that illness deems that unlikely.

But hey, if you’re going out to celebrate New Year with friends or family, have fun. Be safe. And take a moment to think about what you hope for in 2018.

I leave you with a quote. I read this today and was inspired by it. Maybe you will be too. I guess it is my hope for myself for the coming year. To be nobody but myself in 2018.

“To be nobody but yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.”
― E.E. Cummings

Thanks for reading

 

Cate

Illness Doesn’t Stop For Christmas

I still remember Christmas as a child. We were pretty much happy and healthy. As a Preacher’s Kid, I knew that the day would focus on church. Actually, we only opened one present in the morning before going to church. Once that was out of the way we would gather around the Christmas tree, us kids eyeing up the gifts there, but knowing they had to be opened one gift at a time, one person at a time. My brothers would be the same as me in watching carefully to ‘make sure’ that the gift distribution was fair and even. There was never a whole lot of money in the house and so presents were small, but I never felt I was going without.

The next focus would be food, that my mother prepared. Turkey, sometimes ham, followed by pavlova, sometimes trifle and always, fruit salad. My parents didn’t drink alcohol and so we drank fruit punch. My mother, a dietitian, was a great cook and it was always a good meal, with leftovers that would keep the family going for days.

But that was Christmas then. This is Christmas now.

This Christmas, illness steps up and into the way. It is such a focus that it comes first before gifts and food. Before even, who we might share the day with. I’m talking about my illness, but even before that, my mother’s illness.

As an adult battling firstly mental illness, and more recently chronic physical illness, Christmas has sometimes been ignored because of the need to simply survive ( and I mean survive literally) the day. There was one year in the 1990s where I was far from home, waiting to be admitted to a psychiatric treatment programme. There was no celebration. No gifts. No family. Not even friends. And having Anorexia at that time, there was as little food as I could manage. You could tell that I hardly had the best attitude towards the impending treatment. I walked the streets of the strange city I was in. It was exercise, it was something to do. It helped to forget what the rest of the world was doing.

Another year, discharged from hospital on Christmas Eve, I was put into respite care, still not safe enough to be allowed home but no bed available in the hospital. I watched TV that year, with my minder, a fellow ‘inmate’ and at times, my then-husband. Again, no celebration. Severe depression ruled that there was nothing to celebrate. I simply didn’t care that it was Christmas. Mental illness does not stop for Christmas.

More recently it has been a case that physical illness also doesn’t stop for Christmas. Pain doesn’t simply go away so that we can celebrate freely. My feet and legs (currently worst for me right now) aren’t free of pain. Fatigue doesn’t lift so that we have the energy for all the Christmas preparations, let alone celebrating the day. It’s fair to say that it’s a case of ploughing on regardless of the physical illness. I will recover tomorrow. For today, no one is interested in such bare realities as pain.

640px-PohutukawaCornwallis
Pohutakawa Tree, or New Zealand’s own Christmas Tree because it flowers in December. Cornwallis, Auckland. By Ed323 at English Wikipedia – Transferred from en.wikipedia to Commons., Public Domain, https://commons.wikimedia.org/w/index.php?curid=3980193

And now, my mother’s health is the centrepiece of the Christmas table. Those of you who followed my last blog, Infinite Sadness… or hope? will know that my nearly 90-year-old mother lives with Alzheimer’s Disease. Christmas most definitely does not stop for Alzheimer’s Disease or any other form of dementia.

Since Mum was diagnosed a few years ago, each year has been something different in how Alzheimer’s has stepped up to interrupt Christmas. One year I was camped on her lounge floor, on the most uncomfortable sofa bed ever, because Mum had been wandering unsafely, and I was waiting to get her out of her own home (no longer safe for her) and into nursing rest home care. At the time it’s fair to say that Mum and I didn’t enjoy each other’s company. But that didn’t matter. I was all she had at the time, and actually, on that day, she was all I had.

Last year I had just shifted her into secure dementia care two days before Christmas because she had been assessed as needing a higher level of care and couldn’t remain where she was. Last year, Christmas dinner just didn’t happen for me. It was a welcome couple of hours break at home before taking Mum out for a visit to other family members. And that would be really hard work.

It’s taken me all those years, and many more, to understand that illness doesn’t stop for Christmas. Take the images we see on television, Netflix, social media and more. You would think that illness, particularly chronic illness doesn’t exist at Christmas. One would think that we are all healthy and happy, celebrating Christmas with our families. That everyone would have someone special to celebrate the day with. That everyone would have money for gifts and for food. No one would be in pain. No one would have lost the memory of those people they love. No one would be confused, depressed or suffering.

Mum has limited awareness this year of it being Christmas. Her residence is full to overflowing with Christmas decorations and a Christmas tree. She has already had one ‘Christmas dinner’ a few days ago, with her fellow residents. Some of those residents will get to go today to celebrate with their families. But they will all have limited understanding of where they are, who they’re with and what they’re doing. They simply don’t remember. And they are confused. Almost constantly.

After a few years now of concentrating learning in Alzheimer’s Disease, I know that Mum needs to feel comfortable in her surroundings, and mainly because of that I will be ‘celebrating’ Christmas at the dementia facility where she lives, at her pace. If she’d rather doze in her chair all day, that’s okay. It’s okay to just be. Sadly, other family members are not available to be with her in any setting, and actually, at this stage, I am the only person she still knows so maybe it is for the best. Anyone else is just another stranger to her.

I don’t care that illness doesn’t stop for Christmas (sorry about the double negative). Whatever illness we face, we need to let it happen at Christmas. Otherwise, my experience tells me that we might suffer for days following. What I hope is that the people who matter to us will understand that. They will understand that illness is part of who we are and that we can’t just shake it off for a day. Illness doesn’t work like that. It’s not like in the movies.

Merry Christmas, Happy holidays for whatever occasion you might be celebrating today. I hope that you can enjoy the day, and I hope above all else that you can allow yourself to have your illness today too. Take my mother’s example and just be. I hope you have the freedom to do that.

Thanks for reading

 

Cate

 

 

‘DepressionandAnxiety’

Have you noticed how some people talk about depression and anxiety as if they are one condition? Or maybe that everyone who has one must have the other? It has been annoying me for a while now, but I think I’ve worked out why. Stigma. I’ll get to that in a while.

Before we get to it, have a look at this…

This is a television advertisement currently playing in New Zealand. from Depression.org, a mental health promotion organisation. I think they do a great job in spreading information about depression particularly. But I find some of what they share is a little misleading (including an unrelated idea put forward in this advertisment that everyone has this ‘A-ha!’ moment as a turning point to recovery. Really? Reading a book to my child will cure my depression or anxiety? But we’ll leave that for now. It’s not the point of my post).

Lately, the advertisements have been adding anxiety into the picture as if it is a simple add-on to depression. It’s fair to say that many people who are depressed also have anxiety, just as many people with anxiety also have depression. But it is not a given, and they are two quite different mental illnesses. Instead of speaking of

Depression and Anxiety

it seems more like

DepressionandAnxiety

It may well be one of those cases that you have to be seeing the range of advertisements put up by Depression.org all the time, and then you see that they run the two disorders together constantly. But maybe too, you have to be inside my head. And that is where the stigma lies.

It’s my stigma. My stigma against anxiety. Yes, for years I have been adamantly denying that I have any struggle with anxiety. Actually, I had completely convinced myself of this lie. Depression? Yes. Anxiety? Absolutely not.

Over this past year, I have been starting to realise just how much anxiety has me trapped inside a little box, refusing to let me live my life to the full.

There, I’ve said it. You have no idea how much of a big deal this is (for me).

Note to self: Cate, the world is not going to cave in for having said this.

I think that for a long time I didn’t want to have anxiety, because of memories of a friend who struggled with anxiety back when I was in my late teens. When I started to have mental health problems in my late twenties I always used to steer the conversation away from the possibility of battling anxiety along with other illnesses, because I (subconsciously) thought of it as how I had seen it in my friend. And I admit that was not the way I wanted to see myself.

While I’m sure the therapists I saw along the way knew I had anxiety, it was never something I was willing to accept. It was okay for anyone else to have anxiety, but not me. And while those therapists might have known the truth, I don’t remember any of them pushing me on the subject.

See? Stigma. (Ouch).

This week I read an excellent article, 11 Things Others Don’t Realize You Are Doing Because Of Your High Functioning Anxiety.  I’m not so convinced my anxiety is “high functioning” right now. I always get caught up on that term and never know where the line gets drawn, but the article is well worth reading.

It made me realise that when I postponed an important doctor’s appointment this week that I had waited over three months for, that there was a pattern developing in my life. I postponed the appointment on account of pain that was going to make it difficult for me to get to the appointment (it would involve a bit of walking because I wouldn’t be able to get a car park close by).

While the issue of pain was authentic, it was perhaps the angst over the issue of getting there and back (with a lot of foot and leg pain in tow) that had worked me into a state of anxiety. It wasn’t until later that I thought that perhaps the pain was all part of the anxiety I felt. Or maybe even the anxiety triggered the fibromyalgia pain. There were other issues related to the appointment that had me anxious too, but it’s fair to say that at the time, I wasn’t keen to accept it. Actually, I just didn’t even see it.

I have a whole lot more to work through in coming to terms with anxiety and how it affects my life. I realise that it has me backed into a corner and that while I thought I was managing my mental health okay right now, I realise that corner is getting tighter and darker.  Somehow I need to do something about it, and I suspect I’m going to need some help. That might sound brave and self-aware but this has taken me (gulp!) 25-odd years to even admit. I have a long way to go.

Ironically, from where I started this post, I want to finish with a quote from David Karp. He is writing about depression in his book ‘Speaking of Sadness’ but I think his words apply to me equally whether to depression or anxiety. I have ‘doctored’ it appropriate to my emphasis and hope the author will forgive me.

“Much of depression’s anxiety’s pain arises out of the recognition that what might make one feel better–human connection– seems impossible in the midst of a paralyzing episode of depression anxiety. It is rather like dying from thirst while looking at a glass of water just beyond one’s reach ”
― David A. Karp
 

Thanks for reading!

 

Cate

 

 

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

 

 

A New Way For Cate Reddell

Welcome to With These Wings. This is my new blog and it takes over from Infinite Sadness… or hope? It’s time for a change. A new way of doing things. We all need a change at times, and I need it more than most.

From today I will be blogging here, so please follow me now.

While Infinite Sadness… or hope? will remain up so that it can be read, it is not my intention to write there anymore. For that reason, I would really appreciate if you could share this new blog on any networks you use.

I have written at Infinite Sadness… or hope? for nearly six years but in the past couple of years I have felt more and more trapped there. There were people who were determined to put me down, and I was having to consider their reactions to everything that I wrote, as well as what I didn’t write. That’s simply not the way to blog, and while it took me a while, I came to the conclusion that blog is finished.

♦♦♦

Wings. Why wings? There are two reasons:

Firstly, my favourite quote speaks of flying.

“Come to the edge”, he said. We are afraid.
“Come to the edge”, he said.
They came. He pushed them, And they flew…”

-Guillaume Apollinaire

We, okay I, am often afraid and often I need a nudge in the direction of the cliff edge. When I get that nudge, I find I can fly. I know someone is behind me, encouraging me I fly.

The second reason for the name of this blog comes from my wish for the superpower of being able to fly. Wouldn’t that be great? Whether by plane, parachute or a jetpack fastened to my back, I would love to fly. I love more than anything, flying dreams.

I don’t care for other superpowers. I simply want to fly.

As it is I have another, less spoken about, superpower. It is that I live with chronic illness. Both mental and physical chronic health issues are part of my daily life, and it is truly a superpower to be able to live with them and juggle life together. Imagine what wings could do for chronic illness?

This blog is about me. It is about living with chronic physical and mental illnesses. It is about anything else I see fit to write about.

It is for me. It is a means of expressing myself and if you want to join the journey I would love for you to follow me. If you have a contribution to make to my journey, please make it.

With These Wings will fly. Okay, so maybe it will simply be here for me and for you. I hope that there will be something here for you, and I hope I will discover, as I write, just how to fly in spite of illness.

Thanks for reading

 

Cate