Here goes… only waited nine years!

After a three-hour wait this week for a lumbar puncture, my current investigations are over!

The MRI on my knee a few weeks ago came back clear. Apparently it’s in lovely shape – lots of cartilage so no signs of arthritis, and no meniscus tears. Literally the best news! It means it’s nothing mechanical so my running days are most certainly NOT over!

However, it all points to inflammation so is very likely to be sarcoidosis related.

Now I’ve had my lumbar puncture it’s another waiting game but I finally picked up my prescription for steroids.

So today is the day! The first of many… and no-doubt side effects. But you have to be in it to win it right?! And obviously I took my prednisolone dose – and high strength vitamin D, as specialists try to mitigate the damage to my bones – after a run. Fuck you sarcoidosis! I’ve only been waiting nine years…


I think it was worth it?

After several weeks of killer pain I’ve had a couple of almost feeling human. Whether that’s thanks to the anti-inflammatory diet or stopping all exercise, or a combination, or the sarcoidosis and SFN giving me some sort of weird reprieve, I have no clue. But tonight I was determined to dance! And dance! And dance!

Thank you, thank you, thank you DJ Yoda and your Stranger Things mixtape. For a few hours I got my mojo back! This is the reason I probably won’t be able to walk in the morning! I think it was worth it?!

Dance like everyone is watching!

Steroids ahoy!

I’m not entirely thrilled by the prospect of having a “moonface” but if steroids can alleviate this dire feeling of utter misery then I think I can live with it!

Keep smiling. Smile and wave, smile and wave!

I’ve gone from running 10-15 miles in one go to considering the very real prospect of purchasing a walking stick for when days are particularly rough. Despite the face of slap, I’m sometimes drowning.

As soon as I’ve had an MRI on my knee (to establish whether my cartilage is knackered or it’s riddled with inflammation) and a lumbar puncture, at the end of March, I’ll start on a low dose of prednisolone – 25mg per day – on a trial basis to begin with. I actually can’t wait. Though of course like any medication there are lots of side effects – the big one being the consequence for the bones. The lesser of two evils at this stage though, and I’ll be monitored.

Plus, it’s better than enjoying the buzzy feeling I’ve been getting from taking codeine just a little bit too much! I mentioned this to my neurologist (I know some people probably wouldn’t feel comfortable raising it) and she’s upped my nerve pain killers, which don’t make me feel like I’ve just drunk half a bottle of wine, as I was only on a very low dose. No more codeine for me! Dependence and addiction is a very real issue for patients dealing with long-term pain. Something I want to avoid. But also something that shouldn’t be taboo and should be talked about much, much more – like a lot of things, frankly.

Useful links:


Pickled for medical science

They’ve pickled a bit of my skin – it’ll take eight weeks for them to count every single nerve fibre in it apparently (poor bastards) and then they compare it to the skin of healthy women my age. They’re looking for a lower than average count. I had a skin biopsy at the Chelsea and Westminster Hospital on Wednesday in case you were wondering. I’m not the subject of a new Hammer Horror movie, though I do sometimes wonder.

On the nerve conduction tests (of the small nerves), which I also had done, I can’t feel heat very well or vibrations and sometimes I think cold is hot. But they need the skin biopsy results back to build a fuller picture.

A couple of weeks ago, when I was last there, they tested my large nerves and they were fine but at the Royal Brompton Hospital I had a positive tilt test. This basically involved being strapped to the most uncomfortable GP-style bed (so more like a slab of concrete) with massive, velcro harnesses and being tilted into an upright position. I had to stay there until the blood pooled in my feet, I couldn’t feel my legs at all and I eventually fainted – after they’d given me a large squirt, under my tongue, of GTN spray (my old friend – remember the time I had to lie on the floor in Sports Direct?! Let us never speak of it again).

Now, loads of folk are prone to fainting so I won’t be leaving my body to medical science just yet but it can be a symptom of small fibre neuropathy, which is what they are ultimately looking for.

I’m back to see the neurologist next week but it’ll be a few weeks until all of the results come back. If it turns out to be small fibre neuropathy and the MRI on my knee (I’m being investigated for a cartilage issue from running) comes back clear, it could be the nerves that are messing with this too and nothing mechanical at all! We wait and see. It’s a minefield.

The pain is getting pretty rough at the mo though so I’m really hoping I’m getting closer to a conclusion as I’m not walking well this week. I think I’m pretty much hopeless for the time being as far as exercise goes too. This year’s London Marathon is slipping out of sight! Argghhh!


Pins and needles

The nerve issues I have are deteriorating and now I’ve been told to expect the possible need for immunosuppressants. Random parts of my body are now prone to pins and needles…sometimes a section of an upper arm, other times a cheek or a couple of fingers. It only lasts for a matter of seconds, usually, but my god it’s irritating. In fact, sarcoidosis is mainly just irritating! A huge pain in the backside… for real sometimes! Occasionally I lose the use of my hands or a leg. And it’s all become so normal to expect and even say that. And let’s face it, it’s far from normal!

And of course no-one quite gets it. You look fine, you’re always so busy, you work full-time… I’ve heard it or possibly assumed it all before. Sometimes folk just give you a look and you know! You’re not dying, just get on with it. And I do just get on with it. Often I get on with it too much. And that is my downfall. I don’t want to admit how ill I am to myself, let alone to others. If I admit it, it’s winning.

I wonder where it will stop and if there will ever come a time when I don’t have to travel 100 miles to the only sarcoidosis clinic in the whole of the UK, in London. Why did I get the rare disease? I don’t want pity. I just want someone to know what sarcoidosis is when I say it. Sometimes medical professionals look at me blankly. They’ve heard of it but have to Google it, or they’ve heard of it but want me to tell them all about it. I’ve become an expert in my own frailties. Though I guess that is true of us all.

On a positive note, I’ve inspired my daughter to become a doctor “but not just one who tells people what’s wrong with them, one who actually fixes them – someone who actually follows it through”. I hope she specialises in rare diseases. There are lots of us out there who will no doubt spend our lives searching for answers. Perhaps fruitlessly.

The one good thing to come from long Covid is the possibility that unexplained symptoms similar to those of patients with other diseases that affect the lungs, like sarcoidosis, or those who have chronic pain and nerve issues – be they from illness, injury, menopause etc – might actually be taken seriously. There is only so long you can moan about your ailments before people switch off and stop listening. We’ve all got problems, right? I wish I could switch off. I’m sick of hearing one part of my brain moan to the other about being sick and tired of being sick and tired. But I’m sick and tired.

I worry it will stop me from doing my job properly, looking after my family, dancing, running. Sarcoidosis you proper suck!


Chronic pain

It’s been a while folks… but I’m back! I thought you might be missing me moaning about my heart and then my related sarcoidosis diagnosis, so in order not to disappoint I thought I’d go and get another complication to bore you with!

In all seriousness though, chronic pain man…what the actual f is that about?! Mine is my sarcoidosis at play once again, which is, as we previously discovered, why I had a heart attack, which we are now calling a cardiac event, which I’m chuffed about as it might lower my life insurance! Anyway, I digress…back to pain. They say it’s in the mind…arguably not when it’s waking you up in the middle of the bloody night and it feels like someone’s holding a lit match to your thighs, every single nerve in your limbs feels like it’s being crunched, while at the same time a rod is being shoved up your backside or a needle jabbed into the soles of your feet, and all the joints in your fingers are being tugged at. To be fair pain is definitely far worse when we are not distracted, as I’ve discovered, so I’m now making it my life’s work to distract every little bugger of pain in my body by running and dancing the hell out of this life!

My pain initially started a few years back with rectal discomfort that was so severe it made me pass out in the bathroom and I had to be blue lighted to hospital because the medics thought it might be a twisted bowel. Such a drama queen! That pain has come and gone ever since – with no real pre-warning of when it’s going to rock up, and usually sees me running for the loo, armed with paracetamol and ibruprofen, and my IBS meds. No-one talks about toilet-based issues much because it’s, God forbid, not very glamorous but I’m honestly past caring. We need to be honest and keep sharing.

Last December, the three middle toes on my right foot suddenly went numb and since then I’ve had constant nerve pain in my limbs. Some days it’s worse than others. Some days it’s quite unbearable – I don’t know what to do with myself and I get incredibly agitated and feel like I can’t cope with it anymore… but pounding those pavements has been my salvation. Running is my greatest drug of choice, supplemented with specialist pain medication of course. I will do anything to stave off steroids and immunosuppressants.

Yesterday was a bit of a milestone as I was finally seen and assessed by the neurologist in London who deals with sarcoidosis (the only one in the UK!!!). Not only did she believe my symptoms were real (I sometimes doubt myself after previous negative experiences with medical staff) but she’s ordered a whole host of tests. On the cards is another lumbar puncture to rule out MS and check the spinal fluid for other issues, tests of the main nerves and small nerve fibres, as well as a skin biopsy and a tilt test, where they literally try and make you faint. This is because I have been getting dizzy spells for several years when standing up, which weirdly could be connected?!

So now we wait. For the time being though I need to get back running after four weeks off, due to a knee injury (no Bath half marathon for me this Sunday), and clear a space somewhere for a dance floor! Who’s joining me?


Insomnia…oh, and yes, the world went a bit mad!

Sunday 21st June 2020…ridiculous o’clock.

I can’t bloody sleep…I’m surprised this has not been an issue before now to be honest, given the events of the past three months.

First sea dip in lockdown. Up at 6am and back home before 9! That’s the way to do it.

I’ve not blogged for ages because…well…the world went just a little bit mad, didn’t it? In England, the 23rd March was the day lockdown was announced for the following day due to the coronavirus pandemic. Suddenly the fact I was awaiting a ruddy lung biopsy and further kidney stones/UTI investigations seemed so insignificant. The prospect of working from home while simultaneously homeschooling two primary school kids was much higher on my agenda, not to mention the deaths…all those deaths. More than 42,000 of them in the UK now. All those broken love stories. Not just numbers. Flesh and blood.

I’ve mostly been shielding, after initially being missed off the government’s “high risk” list, mainly because sarcoidosis is so rare. But it does affect my lungs so it was a bit of a no-brainer for me really. Though being missed off the list was actually hugely positive as it gave me the inspiration for a news story which I’m pretty gobsmacked to say was nominated by the Press Gazette as one of the world’s best exclusive news stories about the crisis. I’m up there with the likes of Fergus Walsh for God’s sake…ridiculous! And all while stopping two under 10s from killing each other or their maths work from sending me to an early grave first!

Thirteen Saturday night kitchen/garden rave ups and counting…

Joe Wick’s daily workouts have saved us physically but more importantly mentally, along with our own kitchen rave ups (I promise I have been anti-bac’ing the table after we have been dancing our socks off on it). We have also made it to the beach a couple of times, either very early doors or in wet weather to avoid people. What an awful sentence…”avoid people”. I crave a hug more than anything, even from a stranger, but crossing the road when I see anyone remotely close has become my mission. Like Pac-Man dodging ghosts. Two-metre rule if you please!

My husband likely had the dreaded Covid-19 at the beginning of lockdown and was holed up in our son’s bedroom for four weeks. Yes, four weeks. I might have thought he was faking had the football not been cancelled. In all seriousness though he did get quite poorly at one point and was taken to A&E. I have never heard coughing and wheezing like it. Thankfully he wasn’t admitted, so was never tested, and made it home with a steroid inhaler. The children and I didn’t have a single symptom and although our hands were raw from all the washing, I think we are probably the “super-spreaders” I keep hearing mentioned. Either that or the mystery illnesses we had earlier in the year were it?! Only an antibodies test will tell us for sure, but we’re more likely to find yeast and flour before we get one of those so we aren’t taking any chances. Gloves and masks are now the uniform, in what has become known as the “new normal”.

The last Fancy Dress Friday with Joe Wicks. Sob.

Yes, I am loving missing the daily commute, that can totally do one! And the pace is slower and has allowed me to relax and spend more time with my family. There are definitely more birds chirping and I certainly don’t mourn all the cars. But generally the “new normal” fucking sucks! A bit like this insomnia.

I’ve just been diagnosed with an overactive thyroid. No doubt that’ll be sarcoidosis related too as there is a link and my GP has not dismissed it. I feel like bottle of pop that has been shaken at full pelt and then the lid screwed on tighter and glued down. Hyper is an understatement! It’s also affecting my heart rhythm so I’m now on beta blockers for these episodes that I can only liken to what I assume having an elephant sitting on your neck feels like?!

The new uniform!

I must admit though I would be lying if I said I wasn’t looking forward to the rapid weight loss a little bit. I’ve been waiting at least 20 years for cake not to instantly stick to my hips. But like I’ve said before weight loss usually means I’m really sick and like it’s doing now makes me feel grim. So, all hail those love handles!


One year on…

Sunday 8th March 2020

Only I would have a heart…not an attack but something grim that has not yet been officially named…on International Women’s Day. Go me! Seriously body, we could have celebrated some other way…maybe lunch?!

Anyway, one thing that really struck me in the weeks and months leading up to 8th March 2019 was how many compliments I received from other women (not men) because I had reached my lowest weight of adulthood. Not through choice. Not through diet. Not through exercise. Nothing in my life had changed. I was still doing my best to eat my five a day and moderate the more pleasurable stuff. Plus, I was running and playing netball, several times a week, as I had done for many years.

“Wow Sue! You look soooo slim.”

“Skinny Minnie! You look really great!”

If by “great” you mean…dodgy heart, dodgy bladder, probably a dodgy thyroid (as I’m now discovering), kidney stones, topped off with anemia and an almost positive diagnosis of sarcoidosis – a rare, debilitating disease for which there is no cure – then YES, I looked completely and utterly fabulous!

The worst thing is I thought I looked pretty incredible too.

However, I’ve learnt over the past year that when my weight tips under a certain number on the scale it’s not usually something to be proud of. It often indicates there is evil at work. My body is fighting illness. I need to rest. Eat a bit more.

I guess what I’m trying to say…and what better way to do it than on International Women’s Day… is: Women, please stop judging others, and more importantly yourself, by the way they/you look. It doesn’t always indicate good health.

I’ve been skinny through worry, by eating ridiculous, tasteless meals on faddy diet sheets, from over-exercising, by saving all my “allowed” calories for boozy nights out…I mean seriously?!? What is wrong with us? Food for thought I hope.

So, Happy International Women’s Day to you and Happy One Year On to me! This woman – fat, thin or anywhere in between – ain’t going down without a fight! My body is pretty bloody brilliant given the shit it has had to put up with.

PS I’m off the morphine and have got an urgent cystoscopy appointment on Tuesday. I look forward to the day I don’t feel anxious if there is not a loo or an abundant supply of water nearby.


Not a ‘heart attack’

Wednesday 4th March 2020

It’s been a while…part of that has been due to work, illness, general life admin…and also because I’ve been awaiting some fairly unsettling test results.

Outwardly, things have seemed great…I’ve been busy going to parties – fancy dress, Burns Night, I’ve carried on running four or five times a week, I’ve travelled back to the motherland to visit much loved family and friends, I’ve changed my hair colour…AGAIN…but everything has come to a head and my life is now on hold…

Where to start?! Well, I haven’t yet got the “definitive answer” I was hoping for. To bring you up to speed: Since Christmas, a PET scan – which tests for inflammation – revealed there is no active sarcoidosis in my body. This means the specialists can’t prove from that scan that I’ve ever had it! *eyes roll*

However, it did reveal that I have so-called “lesions” throughout my skeleton, in my salivary glands and on my spleen. A recent CT scan has also shown I still have granulomas – clusters of tissue that are usually formed during a period of inflammation – in my right lung. I’m told this and the lesions are symptomatic but not typical of sarcoidosis. I now await a lung biopsy – which involves sticking a camera in and collecting some tissue – to find out exactly what it is, once and for all. If it’s not sarcoidosis it could be cancer or tuberculosis, but that’s much less likely and a cancer test to check whether the lesions in my bones were malignant has already come back negative.

If it turns out to be sarcoidosis the great news is it’s inactive and, therefore, would be classed as being in remission. As the very first CT scan on my lungs last year showed both were affected by granulomas and not just one, as is the case now, I feel hopeful that this is indeed the case. If that turns out to be true I won’t be given any treatment – typically yucky steroids, my consultant has reassured me. This is because my lungs and heart are actually currently functioning completely normally. In fact, excitingly, this has also led to the words “heart attack” being removed from my records. Something happened to it last March – the troponin levels were raised and part of the muscle wasn’t inflating properly – but as it’s recovered it ultimately can’t be termed as a heart attack. Yet, they still can’t tell me what actually caused it. There might not even be a term for it?! Talk about limbo! The biopsy should help to shed some light though as “everything is clearly related”, I’ve been informed.

This is likely to be the case for my ongoing UTI problems too, which incidentally are causing me far more problems than anything else at the moment. I’m stuck in a hellish cycle. I can’t drink so much as a glass of wine or have sex, or it sets it off. And I’m drinking at least a pint of water an hour…the lesions on my salivary glands don’t help as my mouth is constantly dry…but I shouldn’t expect this is good and is storing up trouble for the future.

As you know, last year I was put on long-term low dose antibiotics which didn’t work. I asked for a referral to a new urologist who is now arranging diagnostics in the form of a cystoscopy…though this isn’t happening as quickly as I’d hoped so I’m trying to be diagnosed privately. If nothing untoward is found in the urethra or bladder I’ll be sent to Bristol to have my kidney stones blasted. In the meantime, no-one wants to give me antibiotics due to concerns about me becoming immune to them. This is all very well but more often than not when I feel a UTI coming on a urine sample doesn’t indicate infection and by the time it’s picked up I am in so much pain and discomfort…and typically during out-of-hours periods…that doctors are either being called out to my home or I’m seen in A&E. Not at all how the system should work! The NHS is under enough strain. Hopefully, I’ve been told how to work the system better but for now I’m off work feeling somewhat dreadful and drugged up on yet more antibiotics and morphine. Hideous!

So, I’m doing what any film lover should – when I’m not snoozing on the sofa – watching ridiculously long, classic movies. Starting with The Ten Commandments!



Christmas Eve 2019:

It’s almost time for the Big Man to arrive…there’s a cake left to marzipan and ice, shopping to be done, presents to wrap, cards to hang…what there is absolutely no time whatsoever for is illness. So you can imagine my utter delight when I dialled 111 on my way home from my last shift before Christmas on Thursday – expecting they’d advise me to go to my GP the next day – and I was informed I had to pull over, as a matter of urgency, as there was an ambulance on its way.

Yet again I found myself in an A&E department with a nurse desperately fishing around for a vein. My car abandoned in a pub car park.

After a swift blood test I was told my heart was perfectly fit and fine but there was a blood clot on my lung.

Cue: uncontrollable bawling! Maybe I’d been overdoing it, going to too many Christmas parties – including the 80s one with my good friends Amy and Cat, stressing about all the festive stuff there was left to do…

It’s alright though because like a true Brit after a nice cup of tea and a couple of slices of toast I’d absorbed the news.

I had literally felt fine…really good actually. Well, apart from the fact that for nine hours before I made the phone call I’d experienced excruciating pain in my left breast and shoulder blade – shooting pains that made me wince every time I breathed in. I’d tried shallow breathing and ignoring it. It’s probably indigestion I thought…(I think we’ve been here before!)

Luckily, my colleague Dave convinced me I needed to get checked. Why do I still have such an aversion to getting checked? Note to self: you are not invincible, Sue!

Anyway, after being told I had a clot, once again I felt that overwhelming disgust for my own body. How the hell could it do this to me? Again! But I was tired, it was 03:00am. I’m over reacting, I thought.

Turns out we all were because a CT scan found no clot.

Instead the levels of an enzyme in my blood that detect clots were raised, but this happened because of my lung disease, sarcoidosis. Apparently.

The only thing that is really clear is that no-one really knows much about this auto-immune inflammation that is having a right bloody good go at me.

After some emergency anti-coagulant drugs – I didn’t need – a couple of hospital meals that were actually pretty decent and 24 hours of listening to the confused old lady in the bed opposite, asking repeatedly why she couldn’t go home and if someone would turn the telly up, I was discharged and finally made it to Center Parcs for the surprise holiday we had planned for the kids, albeit a day late. They’ve had a blast!

I’ve been referred back to the Royal Brompton in London where I’m due to get all my sarcoidosis results in January…though I’m starting to get the feeling they won’t answer all my questions. Having a rare disease sucks but at least there was no clot. Small mercies.

Right then. Let’s get on with it! Merry Christmas to you, have a magical time and I’ll speak to you on the other side…let’s all try to avoid any drama and stay out of hospital!