Lockdown 2020

Written after several months at home

For decades I’ve run from

this raging mind, whose

intensity had the propensity

to erupt and destroy.

I fell in love and weathered

birthing, mothering, teaching,

trying, training, attaining, whilst

battling my long-suffering body.

Confined with my mind,

now there’s nowhere to hide.

Uncertainty cannot be boxed

or resolved, so I sit with the

thunder, wait for the calm, and

finally breathe in time.

Journey of an overactive thyroid

Plus the sad state of the NHS

Photo by Karolina Grabowska on Pexels.com

I wrote a few weeks ago about my crazy overactive thyroid, which is now within range. What this means is that the 40mg of carbimazole that I’ve taken daily for the past four weeks has drastically destroyed some of my thyroid tissue thus rendering it incapable of excess T3 and T4 production. The TSH hormones that drive production of the T3 and T4 that circulate around in my blood are still ‘switched off’ but other than that I am ‘normal’. I feel fine, although a little tired. I have gained back the few pounds that I dropped, and it will be difficult to stop eating so much, as I got used to whole days of grazing, non-stop, on carbohydrates, just to hang onto the weight I was at. The downside as that I’ll need to be ‘titrated’ now which means staying on exactly the right dose of carbimazole to maintain the correct range. I think it can be tricky and can go under, in which case I’ll need thyroxine, and my private endocrinologist has still got me on 30g of carbimazole for another four weeks, although by that time I’ll have seen an NHS endocrinologist who might say something else entirely.

The other downside is that my liver function is now borderline. It was borderline at diagnosis, which was due to the toxicity of all that excess thyroid hormone floating about in my bloodstream, causing the liver to work harder. Either that or it was the borderline wine addiction but to be honest I don’t think so. It’s only ever been 2 or 3 glasses at a time and often none at all for weeks at a time, so probably not that. I’m now off alcohol completely and will be until I’m off carbimazole, because the liver function has worsened and is now causing my skin to break out and probably some of this fatigue. I don’t know whether the NHS endocrinologist will try a different medicine but I’ll ask at the appointment. I also still don’t know what the cause is, because the test for Graves disease that the private endocrinologist asked for was messed up by the lab, and my GP cannot request the test as it needs to come from a specialist.

This whole business of going private is sad. Not for me. It cost £200 and it was money well spent. But the fact that so many are having to wait five months to get seen. If I hadn’t have gone private, my condition would’ve worsened and the symptoms would’ve been really unbearable. I’d have had to give up work and be signed off sick, and had no income because I am classed as self-employed and don’t get sick pay. If I hadn’t have had the wherewithal to research my condition and realise what I needed, and discovered that GPs are not experts in endocrinology, and would be unable or unwilling to prescribe carbimazole in the doses that I needed, I would have suffered so much more than I did, and for longer. If I wasn’t the kind of person who makes a decision to get things sorted, and then acts like a bull in a china shop until they are sorted, nobody else would have conducted that fight for me.

I’m an intelligent woman with a will of iron and, although I’m genuinely kind and caring, I’m not gentle when it comes to getting what I need or getting what my family needs. In the past I advocated for my daughter by regularly bombarding the CAMHS unit and reminding them of the NICE guidelines. I contacted my local MP who also advocated for her. I got her treatment earlier because I kept on. My letters were well-informed, articulate and medically accurate. But how unfair is this? I’ve realised more than ever before in my new job how much the system is screwing over the most vulnerable members of our society.

How are these people supposed to get help? There are those around us in situations which are festering, problematic and downright unsafe. A single parent with severe mental health difficulties who cannot see a psychiatrist for months or even obtain the medication that would help them to find some space and calm. A child who can’t sleep because their routine has become completely upside down, who has missed so much school that they can’t tell the time, a child who is out all night and in all day, whose parent has learning difficulties and doesn’t really know how to parent, despite all the love in the world. A clinic where nobody answers the phone. Informative leaflets emailed out to people who don’t have the capacity to understand them and nobody to advocate for them. Local councils with social workers so snowed under with enormous caseloads who, through no fault of their own, are unable to support these families. GP surgeries with locked doors and phone queues over an hour long. Single mums haven’t got the time to wait over an hour. The baby’s crying, the washing needs doing, the cat needs feeding, the kids have to be fetched from school. They’ve got jobs that they need to pay the bills. They can’t get any help from anyone.

It’s a horrible speculation but is the NHS deliberately being run into the ground so that we can all go the American way and buy into lucrative personal health insurance schemes where the rich get richer and the poor just suffer? Where poor people with diabetes can’t get insulin because it’s not covered on their insurance? Where self-employed folks have no incentive to carry on and they have to go back into the corporate world? Or are we already there? I know that the families I work with are suffering because the NHS is no longer fit for purpose – which was to provide healthcare to every single person in a timely manner regardless of socio-economic status. If we are going the American way can we just get on with it then? Because what we’ve got now is neither here nor there. It’s a half-way house where people like me can badger, bombard and be heard, or pay the odd £200 for some timely treatment, and other people can just fall through the cracks in a ‘survival of the fittest, every man for himself’ kind of Trump-esque dystopia.

My thyroid condition will probably be well-managed and I’ll cobble together a path through it in a combination of self-management, education and professional input. But I’m sad for the NHS and all the amazing people who work in it. I hope against hope that this government really does put in some considerable funding and keep it going. I’ll never give up hoping that they really mean it and something will change. I don’t want to become the next state of America, driven entirely by consumerism, corporations, power and heirarchy. I want to live somewhere where every body is seen, valued and cared for with the same ferocious drive to thrive that most of us extend to ourselves and our own.

My crazy overactive thyroid

My first seven weeks with an overactive thyroid.

Hyperthyroidism and me

When did it start?

I was out on a run on the 4th August, my last run before the Belper Rover, an 18 miles trail run that I’d had planned for a while. This was my last long run and I’d planned a 15 mile route around the beautiful Stapleford area of Nottinghamshire. From the very get go I felt horrible: hot, out of breath and heavy. It was a muggy, warm day and I put it down to the heat, sipping at the water from my carry pack and persevering doggedly through country lanes and footpaths until, on mile 7, I realised that it was not going to get any better. Deciding to significantly slow my pace, I shuffled along for another few miles and realised that my heart rate was up to 200, which panicked me. At 50 that’s way over my maximum heart rate and I stopped to walk. The last 5 miles were a nightmare of heat, exhaustion and confusion as I wondered what the hell was wrong. Arriving home, I put it down to a virus as my stomach was churned up and painful. I rested for the remainder of the day and went to bed.

The next day my resting heart rate was ten beats a minute higher than usual at 65 and once again I thought that this confirmed a virus. The next evening I had a 7 miles race booked in the Peak District with my stepdaughter Jess. It would be hilly and hot and I knew I shouldn’t do it. But I messaged Jess and told them I’d be there but may have to stop and walk if I felt unwell. Next night I started the Saltcellar race and made it three miles before feeling sick, exhausted and anxious. I was already running at the back and I stopped to let the two women behind me past and then told the next marshall I was heading back. He kindly accompanied me back and I decided not to run again until I felt much better.

Diagnosis

Through the month of August I did no running but lots of walking. After a holiday in Whitby where I ate all the chips, chocolate and cakes physically possible to get in my belly, I got home and found I’d lost weight. The heart rate was still ten beats a minute higher than usual and I was going to the loo a lot more (putting it politely). Googling my symptoms led to my suspicion that my thyroid had gone overactive and finally, beginning of September, I had a blood test which revealed this to be true.

What it’s like

Having this condition for me has been manic. Up until yesterday, when I started betablockers, I was hyper all the time. I would try to go to sleep but my heart would be banging in my chest so loudly that I could actually hear the swooshing sound of the blood. Needless to say, this is not the most relaxing feeling I’ve ever had. My husband even said he could hear my heart one night, which made me feel even worse. The hunger for carbs was overwhelming until I started on carbimazole, which dulled the appetite. I couldn’t even get all the food I wanted, because I’d get full and then be hungry an hour later. Nothing was able to keep me energised and I was bored of eating the same things but trying to avoid filling up on sugary foods (which I did occasionally do). My anxiety was the worst thing. I’d be going about my daily life and then, apropos of nothing, get a feeling that I was about to die. My stomach would churn, I’d get sweaty, and feel complete panic, with nothing triggering it and no way of knowing when it was going to happen. I also couldn’t stop my mind from racing and worrying, in a pointlessly circular track that said, ‘I can’t teach, I can’t teach, I can’t teach’, or ‘I can’t plan, I can’t plan, I can’t plan’, and, occasionally, for a little respite from the shit talk about work, ‘I might die of cancer’. It was a laugh a minute in my head. Thank goodness that the betablockers have stopped most of this incessant self-imposed verbal abuse.

What to do

GP will refer to an endocrinologist for further testing. Ask for an antibody test to see if it’s Graves disease. This is the most common cause and is an autoimmune condition. It can lead to eye disease and needs to be managed. If, as in my case, the antibody test comes back negative, it’ll need further testing. It could still be Graves as some people don’t show antibodies even though they have it. You need an ultrasound or a thyroid uptake test to see if it’s nodules, most of which are benign. The treatment is similar in any case. It might be an anti-thyroid drug like carbimazole, which makes you knackered for a bit but eventually works. After a while you might be offered radioactive iodine, which kills the thyroid and then you have to take thyroxine for the rest of your life. This is called ‘block and replace’. Whatever the treatment, you need regular blood tests for ever after to make sure the thyroid levels are right.

Some GPs are crap and some are great. I had a crap one first and then asked for another one because the crap one said he couldn’t prescribe anything and I’d have to wait for the endocrinologist. This was a lie and downright dangerous as my free T4 was rising rapidly and had doubled in two weeks. A GP can prescribe carbimazole and also betablockers for the palpitations and high heart rate. The worst symptom for me was anxiety and I’m so happy to be able to say that in the past tense as just one day on betablockers has knocked it out. So far my 10mg a day of carbimazole is doing nothing so that’s under review at the next blood test.

Our poor NHS is gasping for air and a hair’s breadth away from irretrievable decline. I was told 18 weeks for an endocrinologist and, in the event, it was 12. With the small possibility that it might be something malignant I have decided to see a private endocrinologist for £200 a pop plus the cost of any tests. I realise that I’m privileged to have some savings and not everybody does. But if you do, or if you can shove £2000 on a credit card and pay it back over a few months, I’d recommend getting it sorted asap.

Recommendations for living with an overactive thyroid

  1. Go to bed early and nap during the day even if you only have time for 10 mins.
  2. Get on a beta blocker
  3. Eat as many carbs as you can fit in your belly
  4. Do some yoga (I can’t be bothered but I know I should)
  5. Walk every day and get some fresh air. Don’t try and run unless you’re a nutter like me
  6. Lift some weights as this disease wastes your muscles and can cause osteoporisis
  7. Eat a ton of calcium foods. For me it’s enriched plant milks. Bones will need it.
  8. Get a journal and write down all the worries. There will be loads. Writing them helps.
  9. Talk to anybody who will listen. This is a time when friends are needed.
  10. Use a meditation app every day to get some calm

Anxiety

Even writing that title makes me feel anxious.  The word itself sucks and pulls at my brain like an annoying child demanding attention with a whine that becomes a foot drumming tantrum if unchecked.  I am anxious about being anxious and anxious about being anxious about being anxious.  I started to get anxious when I was seven and I ‘got saved’ because the alternative, according to my Mum, who I’d only asked about the meaning of the word ‘Christianity’, was to go to hell when I died.  I was told regularly that even little children can die and that God wants them to go to Heaven but that they have to trust in Jesus.  So of course I decided to ‘be converted’ but then agonised for the next two and a half decades about whether I’d done it right.  When I learned that Jesus would come again in the ‘twinkling of an eye’ and transport all the Christians straight up to Heaven while the rest of the earth awaited the terrifying reign of the antichrist, without whose mark on the forehead or the hand one would be beheaded or otherwise ended, I became fearful of being left behind at the Rapture.  I’d wake up in the night for the loo and traipse through to my parents’ room to see if they were still there.

So that’s where the anxiety began.  All well and good.  Counselling helped with that later on.  So I stopped being afraid of hell and the Rapture and got on with my life.  But a marital breakup and a daughter’s illness brought it back again with a vengeance.  From what I understand, neural pathways are hard to change.  I imagine a billion possible negative scenarios to every situation I’m in and then I obsess about how I will manage them if they happen.  So when I fell in love again aged 45 to the man I’m going to marry shortly, and realised that a house move was the only way to make us both happy in our settings (a house in between both our current locations), the anxiety flared up again.  And it went like this:

What if I never get another job?  What if I’m too old?  What if, because I’m on UPS3, I’m too expensive?  What if they think I’m pathetic because I’m only going for a teaching job and not a job with a TLR, which is where I’m at now?  What if I get a temporary contract and it isn’t renewed?

Then I went for an interview and got the job.  So the questions changed to:

What if I don’t get a permanent contract after a year?  What if I hate it?  What if I can’t manage the kids because they’re more challenging?  What if they’re all sexist and racist and I hate them (the kids)?  What if I don’t make friends?

I applied to port my fixed rate mortgage to a new house, which I’ll be buying for the time being as my partner’s house is proving difficult to sell.  It’s in Lincolnshire.  In a tiny village.  With a 1000 square foot workhouse.  It’s a period property.  It’s beautiful.  But nobody wants it.  My mortgage telephone conversation included so many questions that I was baffled –  already have a mortgage with them and am porting it.  But it’s a brand new application, apparently.  So the questions changed to:

What if they turn me down?  What if they refuse me because I have a temporary contract?  What if I don’t get a mortgage?  What if I am stuck forever with this house?  What if I can’t move?

Now, knowing that I have a new job starting, my youngest is leaving home, I am perimenopausal and often a bit hormonally unbalanced, I am moving house and moving in full time with Tim, that’s a lot of change.  Changes trigger anxiety.  So I’m wondering whether or not to take an anti-anxiety med again.  I took Sertraline for a year after my marital break up and it worked a treat.  I can’t have beta-blockers because of asthma.  But Sertraline, whilst primarily an antidepressant, can also treat anxiety and it certainly did before for that year.  But I’m doing the Calm app, daily yoga, running regularly and have learned to ask for help, not try to brave life alone, not be all super duper Miss Can Do Everything Thank You Very Much.  I’m open now about my anxiety where before I didn’t even know I had a Thing.  I thought I was just a stupid idiot for having panic attacks and found it all very embarrassing.

If I move away and the anxiety spirals out of control, I’m likely to have panic attacks, eat badly, sleep badly and be utterly miserable.  If I take the meds, however, I’ll never know whether I’ve made good progress with managing it with self-care strategies.  I also don’t really know how the meds work and don’t want to put on a load of weight like I did the last time.  They do make me pretty sluggish and about as keen on running as a large lump of pizza dough.  I don’t know – it’s a dilemma.  I don’t particularly want to start the second half of my life by getting so panicky I start punching myself in the head (that can happen), but I also don’t relish being on the zombie drugs for three weeks before I can even function without feeling like a space cadet.

So I’m thinking and wondering and trying to pre-empt problems.  But I don’t know whether being anxious about being anxious is just another symptom of anxiety or whether I can manage this year with my newly forming healthier neural pathways and with self-love and self-care and talking and now blogging.

I already feel less anxious having written all that!  Any other anxious people out there?  Do share ideas, tips, experiences.  I’ve love to know I’m not alone.

Older and newer: embracing the grey

When I met my current partner, who I’m shortly going to marry, I dared to hope that this would be a modern, interdependent relationship, where we lived with mutual respect and love and affection. So far, that has been the case, but when I tentatively told him the truth, on a cycle ride, that my hair is actually grey, I honestly expected him to be rather upset.

I have started this blog to document some of my thoughts and experiences relating to perimenopause, which is, for me, more than a bunch of hormones conspiring to age me beyond all recognition and turn me grey.  Far more than that.  And a million times better, too.  I feel as though I’ve been gearing up for this for years, starting at the age of 33 when I developed feelings for a man other than my husband.  That was the beginning of a process of reassessing my life, and it started with an infatuation.  I thought it was love, but it was really a glimpse into a multi-faceted world of opportunities: different people, places, conversations and friendships.  It turned out to be nothing; we were both married and he wanted an affair, nothing more.  I stopped seeing him and spent months agonising over what had become of my marriage.  When I told my husband that I thought it was over, we decided to go to counselling (Relate) and managed to negotiate some changes that suited us both and gave it another go for ten years.  But the unrest of that fling stayed with me.  It was the beginning of the end – or the end of the beginning.  And that’s what I think this midlife business is all about.  Whether we stay in a relationship for life or not, our relationships do change.  We change.  I started to want more for myself.

I was brought up brethren.  Plymouth brethren.  Strict parents, nothing worldly, long hair, a head covering in meetings and a skirt and never trousers.  No discos, no version of the Bible other than the good old King James with its ‘thees’ and ‘thous’ and ‘sayeths’.  The meeting was a solemn affair and women were under what was termed ‘the headship of men’.   I married under that and we didn’t really stray far from the tree until I went to university to study English Literature at the age of 32.  Suddenly I had options.  I was getting good grades and realised I had a brain and over the next years I graduated, took my PGCE and became a teacher.  I left the brethren, got fit, ran two marathons, raised my three kids, kept an eye on my ageing parents and got grey hair.  I coloured it religiously, obsessively, red, purple, blondey, streaked, dark, covering the roots increasingly often, sometimes every three weeks.  I couldn’t afford hairdressing fees and did it myself using L’Oreal products and then, scared of carcinogenic chemicals, Holland and Barrett brands.  The greys grew in abundance.

My marriage ended, finally, in a fizzled out mess of empty abandonment.  He moved to London with his job and I got to spend all week raising my two youngest whilst holding down a job and dealing with the middle daughter’s bulimia.  They were the most heartrending two years of my life and certainly the most difficult and painful of hers.  Whilst he was away pursuing his dream job, I wrote letters, chased the NHS, called my MP, shouted a lot about the CAMHS waiting list and funding problem and finally she got treatment.  During her time waiting for treatment, she went from mild anorexia to full blown bulimia, characterised not only by binge-purging but also regular panic attacks, self harm and, on one occasion, after a relationship breakup, an impulsive suicide attempt.  He told me I was exaggerating her illness and he continued to return home later and later on Friday nights, we returned to Relate, nothing changed and I ended it.

For the next year, I battled depression and anxiety, took a course of antidepressants, learned to look after myself, started dating again, had loads of fun, and developed more grey hairs.  When I met my current partner, who I’m shortly going to marry, I dared to hope that this would be a modern, interdependent relationship, where we lived with mutual respect and love and affection.  So far, that has been the case, but when I tentatively told him the truth, on a cycle ride, that my hair is actually grey, I honestly expected him to be rather upset.  His response, ‘Is that it?’ surprised me.  I still hung on to this idea that men do not fancy grey haired women.

Now, I’m a feminist.  Honestly.  A strong-minded, educated, mid-40s woman who believes in absolute equality, despises shallow frivolity and obsessions about perfection and considers our brains to be our biggest asset.  But I still want to be considered sexy and that, although I hate to admit it, equates with youthful.  I think we all do.  Men, too.  But lots of women I know struggle with the whole grey hair thing.  Although, I was talking about this with a colleague the other day and he said he reckons loads of men dye their hair secretly.  Loads.  Anyway, I toyed the the idea of going grey for some months and finally went to the hairdresser, asked them to chop out as much colour as they could, take it as short as they could without shaving my head, and went natural in one fell swoop  I bought a L’Oreal purple shampoo, which tones the remainder of the previous brassy overtones, and now I have silver streaks that are all mine.  People think it looks lovely.  I’ve had so many compliments.  My fiance loves it.  My kids think it’s cool.  My students have commented positively.  And I feel like my hair now matches the rest of me.  Older and newer.

My youngest is about to go to university, my house is on the market, I’m saying goodbye to the first half of my life: the day to day life of a working mother and the packets of hair dye.  I’m about to move away, buy a place with my fiance and say hello to the second half which is still brand new, with doors to be opened and memories to be made.

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