I want to hate my body. It seems it’s a natural mental process when it’s letting you down and you don’t like the way it looks, I guess, but I am trying very hard to remember all that it’s having to cope with and how marvellous it probably is. But it’s challenging.

As you know, I’m now taking steroids to help combat sarcoidosis and small fibre neuropathy, for which I now have a diagnosis after a positive skin biopsy. I have been taking the roids for several months now, and I’m not gonna lie – I’ve felt incredible, like I could take on the world! In fact, in my own way I did. I ran a marathon and a couple of half marathons. But nothing lasts forever, right?… and I’ve been jolted back to Earth with a thunderous bump!

My neurologist and the sarcoidosis specialist decided it was time to taper the steroids and I dropped from 30mg to 25mg two weeks ago, and since then I’ve had joint pain in my hands and for the past week I’ve experienced back/pelvic pain that sends electric shocks and aches down my legs. It’s very similar to the knee issues I had several months ago that turned out to be inflammation. It has now become so bad that for the past 24hrs I have barely been able to stand up straight – bent over like a crook – and my body is all off kilter when I do try, and aligning to the left. I look about 4 months pregnant at times because my stomach is so distended and it’s now becoming difficult to walk. My legs aren’t doing what my brain is telling them and of course it hurts. I’m taking codeine and ibruprofen (not ideal) and I’ve ordered that bloody walking stick I previously threatened to buy!!! And let’s not even talk about moonface…

I emailed my neurologist at the Chelsea yesterday – she’s flipping brilliant – and instead of reducing the prednisolone by 5mg every 2 weeks, she now wants it to be every 4 weeks until I reach 15mg, and I’ve also been prescribed methotrexate – an immunosuppressant with even more side effects – to help with the inflammation and swelling, which should assist with the pain.

I know it can all disappear as soon as it arrived but while it’s kicking off it’s utterly debilitating and depressing. The prospect of disability terrifies me. It also makes me realise what an able-bodied world we live in. And that makes me feel ashamed. All the things we overlook and take for granted. I hope all this shittiness makes me a better person in that respect.

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…

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?!

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!

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:

https://www.gov.uk/drug-safety-update/opioids-risk-of-dependence-and-addiction

https://www.nhs.uk/live-well/pain/how-to-get-nhs-help-for-your-pain/

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!

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.

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!