This is a big, fat drag!

It’s a little bit funny…all these feelings inside…

Ok so I’ve borrowed that from the start of an Elton John song.  I’ve woken up early this morning (5:37am) dead tired, sore neck still – it’s been almost 3 months now – and wondered to myself where to from here?

Just over 2 years ago, I got sick with a virus which was either Glandular Fever or possibly Parvovirus B19 but definitely not Ross River Virus, despite what the first blood test reported, and I never fully recovered.  The closest I got to back-to-normal was finally towards the end of last year when I was sleeping pretty well, feeling quite positive about life and the future and making plans.  There were still some aches and tired days but mostly I was pretty good.  And then I began to wonder why my heart was pounding at night, why I was sweating a lot, why my head hurt a lot?  And found out I was overmedicated with T3 and T4 thyroid hormone.  ‘Overcooked’ the new doctor (#7?) called it as he slashed the dosage by a quarter immediately and resulted in the feeling I now have 6 weeks later, of being one of those balloons that’s been floating around the corners of the lounge room for a few weeks – a bit soggy, pinchy and deflated where you touch it.

I really feel for people with a mental illness and if that seems like it’s come out of the blue, it’s not because I think I have one but because I have experienced where constant pain and medication can form the place of a mental illness.  The pain is a no brainer (pardon the pun) but the medication is one I can now see, having had a drug that lightened the load by revving my existence.  Present, I started to feel like I was able to influence my life, make changes I could reliably accept.  I was thinking about moving house, putting my hand up to become a foster carer.  Things that would take a great deal of energy and I knew I could do it.  But that’s gone.  With the lowered medication I have lost my bravery, lost my confidence in myself as I slip back into feeling tired at the beginning of the day, struggling with good sleep and feeling again like there are not enough hours in the day.

So my reason for pointing this out is it’s all based in the physical.  Nothing to do with my mind but the effect has been mental.  Little voices (not actual ones!) but the voice of doubt and reason crept in – ‘you know it’s been 2 years, you better not sign up for anything too tough, give yourself another year and then see where things are’…

But I know it’s due to the medication change.  Which makes me question the delicate balance of a strong, sane mind.  How quickly it can be changed to self-doubt and limitation.  On the flip side does that also mean it can easily be swung back the other way?  Something in me doubts that.  Once a person has existed in a mental space for a while that hurts them, I think it leaves a mark, a shadowed area that might be easy to avoid when things are good and the medication is right, but not so easy when things are wrong.

I have an appointment with the new Doctor on Monday week.  I’ve completed the required blood test for him to assess my thyroid levels and I hope to God it shows what I’m feeling and we can make a change again for the positive.  Because this is a big, fat drag!

 

 

The Google Cycle

What is it about the New Year that gets you looking into new paths and options?  The promise of a simple date change bringing new possibilities, fresh pathways and better results?

I woke this morning with a really sore neck.  It’s been like this for about a month now I think.  I’ve been ignoring it, assuming it will resolve itself in time but a month feels too long now.  After some light stretching and a few simple yoga poses – salute to the sun etc, it’s still there of course.  Each day it’s been slightly different but generally it radiates from the right shoulder, if I lean back that way it feels like a stab in my neck.  If I lean my head back I feel an unstable pulling in the centre of my chest.

This began before they reduced my medication, I remember wondering could it be a result of too much medication.  If so, it’d be improving soon.  Or is it unrelated to the medication?

I began researching online again this morning and came up with fibromyalgia as I have previously been diagnosed.  It still seems odd to me to identify myself as having fibro, because don’t I just have some aches and pains that won’t go away?

Does it help to identify yourself as having a condition that no-one is sure what it’s caused by or what you treat it with?  I came across 2 supplements recurring in the literature being 5HTP and SAMe (you can look up the chemical names!) recommended to decrease muscle aches and increase mood and quickly discovered they were available on my new favourite supplement provider iHerb.  I was all ready to order them and add them to my tablet regime before I realised I should probably discuss this with my doctor.  I got caught up in the exhilaration of recognising the symptoms and seeing the claims that these supplements alleviate them, and believing it could and will do the same for me!

Often when I go through this exciting cycle, I come back to the basics that I could still work on before adding tablets.  I know I could try and get more sleep – go to bed earlier, I know my diet could improve even more, I know I could add some light exercise which is meant to increase serotonin also.

It’s only 3 weeks until my next appointment with my doctor, given the silly season is now over, there is plenty I can work on before spending money on tablets that may or may not help.  In my experience, these things don’t work, or noticeably.  I read so many accounts of people taking x tablet and feeling better that day.  That never happens to me!  Even headache tablets don’t usually work fast for me, they may soften the edges of the ache, but all that gets rid of the ache is water, rest and relaxation.

Are those people lying?  No probably not.  They experienced something.  Placebo or whatever, it worked for them.

Oh well, another Google cycle complete… pain stimulates research, research gives hope, provided in the form of spending money usually…reality check ensues, closer to home options return to the surface and a plan develops.  It’s tiring but at least I’m getting faster at skipping to the end where I put the computer down and go and eat a healthy breakfast now!

 

Overcooked

So I visited the new doctor (because the other was banned from prescribing Thyroid medication – see previous post) and he analysed my blood results as being ‘overcooked’.  Thyroxin has been reduced by a three-quarters and Eutroxsig reduced to half.  So I now take 2 halves of a tablet each day and have had to buy and learn how to use a pill cutter.  An experience in itself!

It was unnerving to experience my doctor being banned.  She explained herself that it was a situation exactly like mine and she swears she would have advised the patient to lower the dosage but she doesn’t have adequate notes and can’t prove it.  The hyperthyroid symptoms continued and another doctor picked them up and reported her.  I feel for her, but it’s not good enough as a GP not to have clear notes on medications you’re prescribing to patients.  Especially ones that in over-dosages cause heart palpitations, head aches, muscle aches and anxiety.

So in 6 weeks I’ll return to see the new doctor.  I’ve lost count now but I think that’s doctor number 7?  And follow his path of investigation.  He thinks the hypothyroidism may have been kicked off by an iodine deficiency.  I’ve had the test and we’ll see, in the week of my birthday, where we are at.

Personally,  I’ve been reflecting on the now almost 2 year experience and have decided that, on balance, I am happier now than I was 2 years ago.  The many changes I’ve had to make have brought me a different life less full of meaningless stuff and people.  Even when I was still experiencing huge fatigue I could see that life was better, if only I could get rid of the fatigue too.  And now I hope I’m nearly at the end of the path, because the fatigue is much less and the side-affects of being over-medicated may be lessening.

I’m here because I took a chance and didn’t accept the advice of my GP that I would ‘get better eventually’.  I did accept it for a while, almost a year, but then I remember so clearly early January this year – having an overwhelming moment of frustration and deciding I had to force myself along a different path, try a new doctor and method (not yoga, or meditation!).  I’m sure I wrote about it in this blog, I’ll look it up and post a link in the comments if I can find it.

So here I am.  I got better because the doctors I found prescribed me a drug that was indicated for my symptoms but not approved because I was in the ‘normal range’ for thyroid levels.  And now I’m a little caught up in their drama but I hope to see this through as well and perhaps in January have some more answers.

No more thyroid medication?

I’ve received an email this morning, following a call last week, from my current doctor who has been helping me with my recovery.  A short excerpt…

Due to two reports from other doctors about my prescribing of thyroid hormones, AHPRA has now placed further restrictions on my practice and since last Friday, 18th November, I am unable to treat thyroid conditions, or prescribe any thyroid hormones in any form, under any circumstances.

My next appointment with her is in 2 weeks to discuss my progress on the thyroid medication, which anyone reading here will know has been significant.  But now I can’t even discuss this with the doctor that prescribed the medication.  It’s worrying.  I’ve never been in a situation like this and I can’t help but wonder if the doctors that made the complaints were like my original GP who told me I’d get better eventually without medication (which I didn’t).

The difficult part of my journey from coming down with a virus to 2 years later still suffering with fatigue and tiredness was that all my blood tests were ‘normal’.  The first doctor who prescribed the thyroid medication – at about a year in – in the form of T3 (Tertroxin) took a punt and advised me this.  He clearly said that my TSH levels ranked in the normal range but that if I was willing to try it, he felt given my symptoms it could help.  It did.  The second doctor (after this one moved interstate) also suggested something that in his experience had worked well for others – natural desiccated thyroid hormone – but it didn’t work for me, making me feel worse.  Then finally this doctor took me off the NDT and prescribed the Eutroxsig based on the result with the Tertroxin and I saw the most significant improvement of the last 2 years.

I understand the need for a governing body to protect patients from mis-management but it makes me question if this is case where proven medicine has not caught up yet with regulation?  So many people tell stories of doctors who will not prescribe thyroid medication or will not alter it from standard.  If I hadn’t experienced for myself the benefits, I wonder would I be concerned of stories of doctors working outside the boundaries as well?

How often do doctors get out of their consulting rooms?  And working day in, day out, how much time do they get for professional development and updating of knowledge?  How far behind are the doctors in their understanding of current medication?

For me, the practice has offered other doctors willing to take over my case which gives me some comfort because I don’t feel like I am at the end yet.  I still want the next blood test results to be analysed and I want to speak to someone about the pounding my heart does sometimes at night.  I also have other test results to discuss and I’d like to return to my original doctor because I really liked her honesty and knowledge.  As I write this I’m undertaking a breath test for SIBO and will be interested to know the results of this also.

Ambition

The introduction of Levothyroxine to my system, known as Eutroxsig here in Australia has made the biggest change to my health.  I no longer feel as tired when I wake, my energy levels throughout the day are better.  My mind feels sharper and the pain in both my hip and shoulder has lessened on most days.

This is all good news.

But with improving health has returned in the last month a renewed, eager and almost vicious desire to ‘achieve’.  In this last month, I’ve been considering moving house to a bigger and more expensive place and I’ve also considered becoming a foster mum.  Both of these I’ve been really close to finalising, attending open inspections, talking to the foster agencies and feeling quite positive about it.  Until the doubts crept back in.

I’ve only just starting feeling a bit better after near on 2 years of fatigue and pain!  I had to change and re-learn my job this year and went through a huge amount of extra stress just trying to deal with those moronic a-holes I had worked with (I’m not bitter!).  My daughter started kindy this year and starts school next year so that’s certainly brought a lot of activity with it too.   So not only was I scared that this new health might all fall through – which is a perfectly normal fear – I started to think perhaps I just needed to let myself off the hook a little.

I have a constant sense of the clock ticking.  Having witnessed quite a few tragedies in my life, I think I’ve internalised how short life can be and created the urgency in myself to ACHIEVE!

A few months ago I watched a short documentary that aired on the ABC here called ‘You can’t ask that’ where people are anonymously asked questions that normally they wouldn’t.  This one posed questions to terminally ill people about what they didn’t worry about anymore.  The woman who replied that she didn’t worry about ambition anymore really stuck with me because she asked if you have to give the ambition away then what’s the point of living?

And that’s where my thoughts are now… Having felt better than I have in ages, the ambition has returned and it wants me to make up for 2 lost years.  But for now I’m going to give up on the ambition too.  Not entirely but I’m going to try to let myself be content and look for the ‘point’ in my life as it is already without forcing through more change and adjustment because isn’t that possible what brought me here in the first place…?

Some lists are good.

I can spend hours searching online for answers if the mood strikes me.  I fall in and out of feeling the need to search for similar stories to mine and looking for new research, concepts or thoughts.  I still feel like I’m looking for what is wrong with me and expecting to find one answer when in fact it’s many.

So when I came across this article recently (even though it’s a few years old) I was pretty astounded to find that almost all of the causes of fibromyalgia, I have at one time or other in the last 2 years identified in myself.  When the doctor diagnosed me with fibro, it did nothing for me, because in my mind, I was saying ‘I’ve got pain’ and he was saying ‘yes you’ve got pain, it’s called fibromyalgia’.  But to see here in black and white all the areas I have become familiar with over the last 2 years felt encouraging.

10 Root Causes of Fibromyalgia (#3 is Thyroid)

I don’t think they are in any order especially but first gluten… I have always eaten wheat and bread and 6 months into feeling like hell I was diagnosed with a wheat allergy, mild but still present in my blood.  Then, Candida overgrowth.  I spent a month with a bad taste in the back of my throat, only a few months after finishing taking anti-inflammatorys’ (that were acting on nothing because the pain was not inflammatory in nature) and a naturopath diagnosed me with candida overgrowth by looking at my tongue.  I had a permanent white coat over the very back third of my tongue.  It’s no longer there these days.

Thyroid – the big one!  All my testable levels were in the ‘normal range’ but I responded well to thyroid medication.  A slow phase onto the medication found what appears to be the optimal levels for me, 40 micrograms of Tertroxin (T3) and 50 micrograms of Euthyrox (T4)  and a blood test confirmed antibodies to my thyroid (again in the normal range) suggested Hashimotos.

Vitamin Deficiencies.  Yep these too!  A doctor very early on found me to be severely Vit D, B and magnesium deficient, exactly as suggested in the article, and I was experiencing frightening pins and needles in my arms and legs daily.  I don’t get that anymore.  I also take Zinc still.

SIBO – I’ve got a breath test sitting on my desk to do in the next couple of weeks as suggested by my doctor in relation to some high estrogen results on a blood test.

Adrenal Fatigue, Mycotoxins, MTHFR, and mercury toxicity.  These have all been discussed around me but no evidence yet that I experience any of those.  I have amalgam fillings but my dentist tells me there’s no evidence they are bad for me.  Plus it’s really expensive to have them removed.  Adrenal fatigue I don’t necessarily believe should be in this list, there is nothing to test for it and I am also not convinced it’s not a byproduct rather than a cause.

Glutathione Deficiency.  This is the other supplement I take regularly, NAC or N-Acetylcysteine, the precursor to glutathione which helps in it’s production which my doctor recently discovered I was low in homocysteine.  I think if I have not responded well to the next blood tests she will probably look at the MTHFR and methylation cycle issues.

Ok so 6/10 aint bad!  What this list did for me was help me realise that I’m on the right path.  I suspect in 5 years, maybe 10, the actual biology and chemistry in fibromyalgia will be better understood as well as the how – how does it make you feel pain?  I am sure this is all linked with Chronic Fatigue which has really outlived its name and while being a great description of how you feel doesn’t actually tell you anything about why.  It’s more like an umbrella name for a whole lot of conditions.  Science will catch up first to explain the why and then slowly societal attitudes will follow.  There may be a whole lot of people who have some apologising to do!

 

I’m struggling with food again

This time is not like last year when everything tasted like metal for about a month.  No-one could really pin down what the reason was but the most likely culprit was candida overgrowth.  I couldn’t even drink peppermint tea without a nasty metallic taste.  I’m sure I could find the posts where I wrote about it, I’ll have a look and post it in the comments if I can.

This time it’s more psychological.  I get this feeling that I could be doing better with my diet.  Less coffee, zero sugar, stop sneaking bites of my daughters’ bickies!  I just haven’t found a way of eating that I feel happy about.  It’s too challenging to find good food, too expensive, too time-consuming and sometimes I’m simply put off because when I read the recipes I don’t know what the ingredients are!  So I turn to the Internet for advice and perhaps that’s where it goes wrong.

 

There is so much advice which is great because that’s why you turn to the Internet, but… there’s SO much advice.  And a lot of it conflicts and some of it is downright scary!  When I was advised (by a very correct and methodical blood test) that I had a dairy allergy, I turned to soy coffees.  But recently I read about the dangers of soy.  In this very methodical blood test I was not diagnosed as having an allergy to soy and soy lattes having been around so long that jokes were made about them (I’ll have a double decaf soy latte with a twist of lemon), I assumed it was ok.  Recent research points the finger suggesting soy contains ‘goitrogens’ which depress thyroid function and phytoestrogens linked to breast cancers.  Now I don’t know if these are true because for every page claiming one side, there are plenty claiming the other (although they seem to be sponsored by soy milk companies).  Actually the question should not be ‘is it true?’ but ‘what does it mean?’ that these substances are in soy milk.

Is it ok to think of the the old ‘where there’s smoke’ and perhaps try to make some common sense decisions around food?  Mass production or anything that has been changed through commercialisation seems to be wise to steer clear of.  Take bread for example.  It’s becoming pretty clear that GM wheat or dwarf wheat that is commercially better for growers is incredibly bad for consumers, but does that stop people buying it?  No, because it’s produced and sold cheaply and for some reason people assume the supermarkets have their best interests at heart.

And this is at the heart of my problem.  I can only buy what’s made available to me.  I am lucky, I live in a city where farmers grow food nearby and sell it to supermarkets who sell it to me, otherwise where would I get my food from?  But everything is mass-produced so even my apples are spray painted with a gooey gum to make the look appealing.  I don’t want them to look shiny, I just want them not to kill me when I eat them!

So I go round in circles… what’s the best way to eat?  Where should I get my food from? And how?  How much time can I spend on sourcing good food and how much money should I spend?  It really is a topic that can seem to take up a lot of your day.  You’ve just got done eating breakfast and you have to start thinking about lunch and do you need to shop for new ingredients for it.  Add to that some allergies and a 4 year old to feed as well and I spend a lot of time thinking about food.  It’s not as much fun as it used to be!

 

Work with it

I paused last night to question myself, how it can be that I still feel like life is rushing by when I’ve made so many changes to it specifically designed to allay this feeling.  How can the days seem so busy when I no longer work full-time?  And they seemed so long when I did.  For a long time I’ve felt it must be because I couldn’t do as much as I used to and need more sleep.  But it hasn’t felt like the right answer.  People keep reminding me that I am a single mum of a four-year-old.  Why doesn’t that seem to me enough to keep me busy?  Especially since she is now in Kindy 2 days a week.
At the end of today I feel more tired than I have in ages.  I woke up very early again, got both of us up, dressed and ready and drove the four-year-old to Kindy. I went to the shops to buy a new fitted sheet because my other set wore through last night. I went to the chemist. I did some work at home for just an hour or so. I drove half an hour to the doctors where I was for an hour and then drove the half hour back again to Kindy where I was for 3 hours at a sponsorship event followed by 1&1/2 hours at the park. I did some washing, I made dinner, I went to the chemist again and I changed the sheets on the bed, washed the dishes and I wrote this piece.
Reading that back it doesn’t seem like a lot to me but what’s dawned on me is it actually is and I think maybe the problem is I am not valuing what I’m spending my time on.  My thoughts at reading this was ‘only one hours work?’ and I am stuck on that idea that work is the most valuable task you do in a day.  For years it was the activity I spent most time on and most energy on, since I got my first job as a christmas casual at Harris Scarfe back when I was 19.  When I went back to work when my daughter was 14 months old, I felt I had to do something important with that time and threw my energy into forcing it to be successful.
Even though I now work for myself, I’ve noticed that often when I am working, I feel trapped, irritated and frustrated, like I can’t get to the end of the work fast enough. I need to work to earn some money, but I was so offended by the way I was treated when I got sick I’ve ended up in a situation where I don’t want to be working when I’m working and I feel like I should be working when I’m not.  It’s complicated but I think I’ve realised that work – in the traditional sense of a job you do that pays you money – is just not that important to me any more.  It doesn’t mean I dislike it completely of course, being a travel agent is kinda fun and entertaining and I love my clients who are very easy to work with.  When time is short I just don’t want to do things that I don’t love anymore.
Because I need to have an income, I just need to be aware of this feeling I’ve uncovered, and just ‘work’ with it, literally.  Use the phrase I can do this and just get through it and make the shift from work as being the most important thing I’ll do in a day to it being my daughters smile as she balances on stilts for the first time at Kindy.

Hey! Fever…

It’s that annoying time of the year when the days are getting longer, the sun is rising earlier and I’m waking up at ridiculous times again.  We should be rejoicing as spring comes but this winter is really hanging on and being a pain in the butt.  This time last year we were well into 25-30 degree days but this year, it’s still 12 degrees and everyone’s fed up.  The blossoms are out but it’s freezing cold, half of the day thinks it’s spring and the other half winter and my daughter and I have hayfever.

Last week she was sick for a day, sent home from kindy after being weepy most of the day and falling asleep on the floor.  We spent the next day totally veging out on the couch, watching movies and completely relaxing.  But even doing that was a little hard for her, she didn’t want to leave the house at all and we had a few tears over small things like movie choice and lunch.  It reminded me how hard it is to stay ‘yourself’ when you’re sick.  I could tell how sensitive she felt and how choices overwhelmed her.  In some ways, I felt comforted because I realised for about the 100th time how challenging it is to stay on top of your own thoughts when you’re not well.

It’s coming up for 2 years since I first became ill.  In that time I’ve had lots of different phases that could probably be summed up by the grief curve; denial, anger, bargaining, depression and acceptance.  I say that flippantly because you can only really recognise the phases after the fact and sometimes you retreat into a phase and actually I’m not doing at all well with acceptance.  My first introduction to the grief curve was a photocopied graph handed to me by a school counsellor after my brother had died.  I don’t remember him or her connecting to me in any other way just handing the piece of paper and asking if I had any questions.  I didn’t.

When I was pregnant and in a strange and new situation, I found myself unable to recognise my own thinking.  People might dismiss it as hormones but I was still myself, just a different version of myself.  It took a long time before I felt like myself again – I’m talking years and probably only slightly before I got sick.

My point (I think) is that watching my daughter, a usually goofy, carefree kid, reduced to a weepy mess by an ear infection reminded me that we need to go easy on ourselves when we’re sick.  Especially when it lasts a long time.  I used to know the feeling of being sick when it came and went – I’d realise I was coming down with something and recognise that I needed to quiet the negative monkey brain chattering away because I knew that I’d feel differently when I recovered.  But what do we do when that illness lasts for a long time and you start to forget what your usual pattern of thinking is?

You have to remind yourself.  That’s what.  I don’t normally go in for positive affirmations like you’re enough and you’re worth it.  Nothing wrong with them, they just don’t do it for me.  I try to remind myself in small ways what I used to be like and do.

Letting the thoughts out of the box

In a recent spate of spring cleaning, or more accurately ‘any-season minimising’ the amount of stuff I have, I opened a box that I had assumed contained baby clothes.  I knew I’d had trouble with the idea of throwing away my daughters clothes from her first year.  As she’s grown the clothes have become less important but the little tiny baby dresses and jump-suits really captured my heart, and even though I was fairly certain I would not have another child, I couldn’t bring myself to give them away.

So opening this box was a surprise when I realised it contained all of the clothes that I’d worn whilst pregnant and the 6 months or so after while my body adjusted.  Stretchy trousers, large t-shirts, loose dresses and so many tank tops.  Special feeding tops with removable inserts, clips to allow discreet access, hardly worn soft bras, the top I was wearing when I tried to share a difficult memory with the baby’s father and he was more interested in something (anything!) else.  And the giant pairs of underwear.  Specifically bought high-waisted to be sure not to aggravate the c-section wound.  All of it in the softest of cottons, as if my body had been unable to tolerate anything harder.  I found the wrist guards I’d had to wear at nighttime when I developed painful carpal tunnel in my wrists.  I found an opened box of breast pads, some tiny nappies and clothes that weren’t even maternity wear but that I had spent a lot of time in whilst pregnant.

And then I remembered putting it all there.  I had wanted to close the lid on that time, separate all the clothes from my other ones and stop seeing them everyday.  The box was a capsule in time, like I had rampaged through my room and confiscated everything that had a hint of the hard times.  It was a way to shut it all up and put away those thoughts that came with it, the ones of inadequacy, the ones that said maybe you should have done this or spoke of failure.  But I didn’t know this at the time.  It only occurred to me as I took in the contents of the box and the memories came flooding back.  What power a t-shirt can be – a reminder of a time in life.

Now, I have placed all but 2 of the tops back in the box and tomorrow I’ll drop it all off at the Salvo’s and they can send them to someone who needs them, and will hopefully create happy memories with them.  I’ll most likely end up taking the 2 tops as well, perhaps not the undies tho?  I’ve just realised I put the undies all back in the box too!  I really don’t think I saved them because I thought I would use them again, they were just part of the whole deal, guilt by association and I think I just packaged it all up and put it away so as not to think about it anymore.

Does this have anything to do with being chronically ill?  No, and yes.  I suspect it’s a common trick of the mind to package ‘stuff’ together – events, reasons, repercussions – and hide the thoughts away.  Something I’ve been doing lately is trying to catch my thoughts and assumptions and asking if they’re true.  I can’t do that… well really, can’t I? Letting the thoughts out of the box and checking what’s marked on the box to see if it needs updating.  It takes some time to hear your thoughts, and lots of energy to question them.  I can see why I put all those clothes away till now.