Pain: a very curious companion

July 5, 2018 ~ Rachel ~ Leave a comment

Chronic Pain is something of a curious companion. A very constant, curious companion.

When waking in the morning it’s already there. Bright-eyed, bushy-tailed and smirking in delight. Always perched at the end of your bed, double espresso in hand and impatiently tapping a foot. Just waiting to crack on and eager to ruin your day.

From eyes open to eyes shut, Pain makes everything you do a mission and the simplest of things a chore. Stairs turn into mountains and every walk feels like a trek. It’s there when you shower, cook, eat, drive, shop and rest. It pesters you when you’re working and turns your brain to fog. It mocks all attempts at exercise. It punishes you for weeks.

Like a lazy toddler who refuses to be put down, Pain hangs off necks causing knots to form and tendons to shriek. It clings to backs until muscles pull and ache. It grips hands in a vice, crushing fingers until colour drains and cramp sets in. It bounces off hips and sits astride shoulders, gripping temples and reigning blows down upon throbbing heads. It’s positively relentless. And an utter pain in the arse.

At the end of the day when you eventually collapse into bed, Pain is still there. Snuggled in like an unwanted spoon, weighing you down and wrapping around every painful limb. And then for its grand finale – the biggest insult of all.

By the time your eyelids are hanging down past your cheeks, blissful sleep doesn’t even come to save you. No sirree. Pain snores like a freight train, kicks the small of your back and hogs the entire duvet. So now, you’re utterly exhausted and completely wide awake, all at the same time. Painsomnia they call it. Possibly the worst hours of the entire 24-hour day. And that really is saying something.

Week after week, year after year Pain hangs around like a bad smell, just sat there waiting every morning. You can try drowning it in lavender scented bath water or drugging it with pills. You can count your breaths and be mindful or ‘downward dog’ it to death, but nothing really seems to work. No matter what you tell it or how loud you scream, rant and swear, it just smirks a little more and ramps it up another gear. To give Pain its dues, it certainly has commendable staying power and a very thick skin.

So yes, Chronic Pain is quite possibly the most curious, constant and loyal companion of them all. Just like cellulite or a very needy dog, come rain or shine, no matter what you do, it’s always there and it refuses to ever back off, take a break or budge.

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Dr. Pitbull takes charge

October 9, 2016 ~ Rachel ~ 3 Comments

Recently something I never thought possible happened: I stumbled upon the very best GP in the world. Who knew such a doctor even existed? I’d certainly given up all hope of hunting down such a rare and mystical beast. Up until this point, I’d have probably given better odds to coming down one morning and finding a unicorn eating breakfast at my kitchen table.

It was a friendly, blood-taking nurse who originally pointed me in his direction. I’d been having a moan about the less than impressive medical care (namely the great Azathioprine fiasco) I’d experienced recently, saying I felt completely let down.

“I know just the doctor for you,” this nurse told me. “You’ll like this one, I promise. He really cares and he’ll definitely fight your corner; he’s like a pit bull.”

It all sounded too good to be true, I thought, but worth I punt, so I made an appointment to see him. A month later (yes, it can sometimes take that long to get an appointment) I rocked up to the surgery.

Well, blow me down with a feather if that nurse wasn’t right.

He didn’t try to rush me out of my seat or make me feel like an inconvenient hypochondriac. He asked questions; he listened; he genuinely cared. And then, just when I thought he couldn’t have got any better, he said something that I’ve often thought but would have never dared say out loud, and certainly not to a doctor.

“Lupus is a really terrible thing to have,” he agreed. “If it were cancer, then everyone would know you were sick; they’d make allowances and care a little more. But I image when it’s a disease like this that no one can see, it must be very frustrating to have it ignored or not taken seriously.”

Well, didn’t Dr. Pitbull hit that one square on the head. It definitely goes down as the most empathetic thing a doctor has ever uttered in my presence. And then it got better still.

“You don’t have to settle for inadequate treatment, you know,” he continued. “You do have other options“. This was news to me. “Would you like me to refer you to the Lupus Unit at Guy’s Hospital in London? ” he asked.

“Can you even do that? ” I said, “No other doctor has ever mentioned the place, let alone offered to send me there.”

“Yes, of course I can, ” Dr. Pitbull said.

This all happened a month or so ago, and, if I’m honest, I’d filed our conversation to the back of my mind, along with all the other pipe dreams that are unlikely to ever happen. You know the ones: full health recovery, Euro lottery win, shifting the muffin top – that sort of thing.

And then, out of the blue, an appointment alert popped up on my phone. Dear god, he’s only gone and done it. On 10th November I’m getting my foot through the door of the largest Lupus unit in Europe – a place filled with doctors who treat nothing but Lupus every single day.

As if that wasn’t enough of a reason to worship at the feet of my new, wonder GP, in the months since I transferred over to him, he’s also proved to be everything the nurse prophesied and more. As promised, he emails me the minute my bloods come in to tell me the results and check I’m OK. He then replies within minutes of my reply, regardless of whether it’s his day off or rather too late at night.

Yesterday, (a Saturday, no less) he took doctor care to a whole new level. When replying to his email, I said I’d felt terrible all week and couldn’t sleep. Straight away he came back and asked if I’d like to see him next week. That would be great, I replied, but I’ll never get an appointment with you.

Low and behold, a few minutes later, another appointment alert for this Thursday popped up on my phone: he’d only gone and sorted it out himself.

Give the man an early sainthood. He’s single-handedly proved that some doctors are worth their weight in diamonds. And that, with the right people in place, there’s still hope for our NHS yet!

And just one more thing…

May 30, 2016September 29, 2016 ~ Rachel ~ Leave a comment

I promise this is not a doctor bashing blog (I know the majority do great things every day), but I’m feeling ever so slightly grumpy after recent events.

So here’s the thing. As a patient, I just wish that sometimes doctors would be a little more… what’s the word I’m looking for… empathetic.

I can count on one hand the number of doctors I’ve seen who seem to care. Genuinely care I mean, not just asking what they can do to help. Surely ‘caring’ should be a prerequisite for getting accepted to med school, and attending an Empathy class should be compulsory. There’s bound to be a half an hour slot right between Dissection 101 and the What’s the Longest You Can Keep Your Patient Waiting seminar. It seems to me that a number of other important classes have already been cut from the training curriculum; The Importance of A Good Bed Side Manner and Explain, Don’t Patronise are two that immediately spring to mind.

Hey, if ’empathy’ is too big an ask, I’d be happy to scale back all my expectations and just settle with some good old-fashioned listening. This very basic skill only requires the ownership of two working ears, so no additional NHS funding will be necessary.

Yes, yes, I do of course understand that they’re a very busy bunch up at my local rheumatology department, and that it’s no doubt overrun with 1000’s of other people in exactly the same boat as me – all gnashing their teeth in exasperation and wanting a little more support. I am also well aware that there’s bugger all that can be done to cure Lupus, and most of the treatments are always going to be hit and miss. It’s all about the ‘management’.

But here’s the thing: (I might as well speak on behalf of all the 1000’s of fed up, teeth gnashers out there) we would like to point out that we’re more than just an NHS hospital number. We’re also more than a set of blood results or a bi-annual appointment that needs to be checked off the consultants to-do list. Some of us are getting mighty fed up with being fobbed off, patronised, pacified and then packed off till the next time, with absolutely no sign of any improvements or progress whatsoever.

Ok, grumpy rant over for the day. I’ll now hobble off my soap box and go take my meds like the good little patient that I am.

World Lupus Day 2016

Image ~ May 10, 2016May 10, 2016 ~ Rachel ~ Leave a comment

Good doctors are an endangered species

April 26, 2016September 29, 2016 ~ Rachel ~ Leave a comment

From personal experience, I know just how long it can take to find a really good doctor. When I say really good, I mean one who’ll not only listen, pass the tissues and nod sympathetically in all the right places but also act on what you say and actually get something done.

Whether you’re at the local surgery or in presence of the lesser-spotted and rarely sighted rheumatologist, I find that half the time, these medically trained mortals are an impatient bunch. They sit, stopwatch in hand waiting to shoo you back out the door as soon as your allocated time slot is up.

As it is, I aways feel like a raving hypochondriac, as I hurriedly work through my pre-prepared lengthy list of ‘new’ symptoms. During most appointments, no matter how fast I talk, I barely manage to get past the ‘Top 3 things I absolutely need to ask’. My handbag is now full of crumpled up old scraps of paper covered in unanswered questions and angry-looking doodles.

I often walk away from appointments feeling irritated and let down. I rarely feel any more clued up (on why I feel so shit) than before I went in. Many times I’ve been in floods of tears by the time I’ve reached the car; on one embarrassing occasion, I didn’t even make it to the parking ticket machine before the snivelling began.

I had assumed that once my Lupus had been diagnosed, the whole doctor situation would improve. Back then I still had the optimism of course.

My first rheumatologist was absolutely useless. Perfectly sweet and highly qualified she may well have been, but with all the personality of a bag of limp lettuce. More worryingly, it seemed to me that she had little idea what to do regarding my treatment, and no obvious intentions of coming up with a plan anytime soon.

Every six months I’d return to her office and list the same issues and complaints; problems which were, unsurprisingly, getting worse with every visit. Her response was always the same: she’d mutter and mumble about my bloods and tell me she ‘understood’. Now, ‘nicey-nicey’ isn’t really my bag at the best of times; certainly not when I’m looking for some decisive medical intervention.

The extent of her ‘treatment’ was recommending that I ‘stretch out’ the crippling pain in my hips when it got too bad. Give me strength. I didn’t wait for over 2 hours on a suspiciously sticky waiting room chair (not to mention many years just to get the appointment) to be told that. If I could have fled the scene of the crime undetected, I would have throttled the useless woman then and there. Luckily for her, I calculated that with my pronounced limp, I’d have likely been apprehended before I even made it as far as the nurses’ station.

When the stretching didn’t fix the pain (no medical degree needed to realise that one, Sherlock) she sent me off for a six-week ‘getting back on your feet’ physiotherapy course at the local ~~old people’s home~~ hospital. Dear god in heaven, what a truly hideous experience that turned out to be. I was easily the youngest in the room by at least 40 years, yet still the only one unable to lift my legs up off the mat on command. Pain and humiliation in one.

It was only when I mentioned to my Lupus nurse that I wasn’t exactly ‘enamoured’ with my allocated rheumatologist, that she told me I could request a transfer via my GP. I hadn’t even known that was an option. She recommended I try a different, slightly more pro-active doctor in the department i.e. one with less small talk and hand wringing and more ‘jump to it’ action.

A couple of months later I rocked up to see my new rheumatologist. He promptly sent me off for an MRI, which in turn confirmed I had massively inflamed and swollen hip joints and a spattering of arthritis to boot. Clearly, no amount of gentle stretching or cycle classes for the over seventies was going to sort that out.

A few short weeks later I was sent for a cortisone injection into each hip; a week after that I was practically pain-free and could finally walk again. Halla-bloody-lullah.

That’s not to say the current rheumatologist is perfect of course, far from it really. To this day I have still to get through my list. And I often walk out frustrated and on the verge of tears. But I guess the important thing I have to remember is that at least I can walk out now. If I’d stuck with my first rheumatologist I’d probably still be ‘stretching it out’.

When diagnoses are a bit like buses

April 22, 2016September 29, 2016 ~ Rachel ~ Leave a comment

My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen. I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.

Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips; some days they got so bad I could hardly stand up. I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue. He sent me off for x-rays but nothing showed up. He didn’t really bother to investigate beyond that, even though the pain continued.

Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned. I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.

What a proud Forest Gump moment that turned out to be.

Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat. Oh, how I laughed.

Of course, the heel lift did nothing to help the underlying issue that was Lupus. Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.

Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights. Heel lifts no longer become such a concern as I could barely stand up without falling down.

This was later followed by a night where breathing became tricky and I lost feeling in both my legs. An ambulance was called and I was whisked off to the local A&E. The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy. So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride. Australia sure isn’t the cheapest place in the world to be sick.

Fast forward a year and I’m back in the UK. Out of nowhere my fingers suddenly started to go numb at the drop of a hat. One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea. Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.

Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert. BINGO again. It’s Diagnosis Number 2: Sjögren’s Syndrome. Bit like buses these damn diagnoses.

I honestly can’t even remember how, why or when they reached my final diagnosis of SLE. For some reason, my GP failed to tell me she was even testing my blood for other things. So I suppose it stands to reason that she would also forget to tell me what they had found out.

The first I knew of it was during a nurses appointment at the hospital. Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.

So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know.

Queue much crying by the time I’d reached the car.

Why is Lupus so difficult to diagnose?

April 13, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Lupus is a chronic and complex disease that can throw up many different and often bizarre symptoms – symptoms that can vary greatly from person to person and often randomly come and go over weeks and months.

It’s known as ‘the great imitator’ as many of these symptoms mirror those of other, far more common conditions. This makes the little bugger that much more difficult to diagnose. To make things trickier still, there is no single laboratory test that can determine if a person has Lupus, and a test result may be positive one time and negative another time.

It’s safe to say that this certainly isn’t the most helpful or cooperative disease to have!

Before you can be branded with that great, big, ugly, Lupus stick, the doctors will have to look at your current symptoms (there are plenty of these for your body to pick and choose from), your blood test results, your full medical history and the medical history of your close family members.

The blood tests are used to assess your general state of health, check if you have an infection, see how well certain organs, such as the liver and kidneys, are working and screen for certain genetic conditions.

The first test off the starting block is the erythrocyte sedimentation rate (ESR) test, to determine whether there is any inflammation in your body. This is quite a useful little indicator as Lupus has a habit of making various joints and organs swollen and inflamed.

Next up is the anti-nuclear antibody test (referred to as the ANA test) – the test you will probably hear about the most. This test is to check whether there is a certain type of antibody cell in your blood, known as the anti-nuclear antibody. Approximately 95% of people with SLE have this antibody, but it’s also possible to have the anti-nuclear antibody without having SLE. In other words, this test needs even more tests to back it up. Useful!

Following in hot pursuit is the anti-DNA test, which also checks for a certain type of antibody in your blood, known as the anti-DNA antibody. Sadly having this antibody means chances are you do indeed have SLE. Of course, the level of anti-DNA antibodies increases if you’re having a flare-up, so that can be pretty changeable too. Oh yes, and the antibody is only found in around 70% of people with the condition. Even more useful still.

Finally, there’s the complement level test. Complement is a chemical in the blood that forms part of your immune system. The level of this chemical may be tested to check how active your SLE is. The levels decrease when your SLR is more active.

All test results will probably be sent directly to your GP and your rheumatologist to mull over. In all these years no one has ever bothered to tell me what the results have been, possibly because I’m only the patient on a need-to-know basis, more likely because I wouldn’t have a clue what any of them actually mean.

I’m just a humble little patient, not a doctor, so to read more in-depth info about the different laboratory tests required, you might want to have a nosey here.

Of course, the tests don’t stop once you’ve been diagnosed. Once you have SLE it is possible to develop other conditions, such as kidney problems, so regular monitoring will be necessary to check for any changes or complications. Certain medications also require regular testing to make sure everything still working as it should do.

You may also need to have scans, such as an X-ray, ultrasound scan, magnetic resonance imaging (MRI) scan or a computerised tomography (CT) scan to check whether SLE is affecting your internal organs.

All-in-all it can often take years for a Lupus diagnosis to be made. To hurry up the whole painful ordeal it certainly helps to find yourself a sympathetic, empathetic and medically clued-up doctor who will take your symptoms seriously, and then move heaven and earth to get you treated.

Happy hunting and good luck!

‘It’s not lupus – it’s never lupus’

April 9, 2016May 17, 2016 ~ Rachel ~ Leave a comment

On the US TV show House M.D, trying to diagnose lupus became something of a long-running joke. ‘It’s not lupus – it’s never lupus‘ became something of a catchphrase for Dr House.

It took until episode 408 before a case Lupus was finally diagnosed. That just about sums up how long it takes in real life!

Pointless questions and shiny new drugs

October 6, 2015September 29, 2016 ~ Rachel ~ Leave a comment

Had my twice-yearly Lupus MOT yesterday, and as ever I went in armed with plenty of questions and came out with even less of a clue. Realistically low expectations successfully achieved again.

The annoying thing was I actually look forward to these appointments, bizarre as that may sound. After months of pain there’s always a sense of hope to be had when speaking to someone in the know; in this case, it’s my rheumatologist. Also known as my go-to dealer with a prescription pad offering a choice of pick-me-up injections and ever stronger pills and drugs.

So armed with a pot of warm wee and my kindle I trotted off to the hospital with a slight bounce to my hobble. Breaking with NHS tradition there was no queuing for me that day. I was whisked onto those weighing scales (I wish they’d let me take my boots off, they’re really rather heavy) and into pole waiting position within minutes. So far, so good. My positive attitude went up another notch.

“So, how are you feeling?” he asked. What an unoriginal question, can’t these doctors at least make the effort to jazz it up a bit.

“Not great, tired as usual.” My standard Lupie reply. Then I realised I best seize the moment, so I got into my stride. “Actually, I’m continually exhausted, I struggle to stay awake and I’ve had to give up my job. I’ve got horrible pains in my arms that leap from joint to joint, my bones feel bruised and my skin is too sore to touch. I recently spent two days being prodded and poked by four different hospital departments and I seem to bleed at the drop of a hat. Oh yes, and my hips still hurt when I walk.” I was quietly pleased with this synopsis, especially given the diminishing state of my memory.

“Well, your bloods aren’t looking too bad, have you been overdoing things perhaps?” I gritted my teeth. Have I been over doing it? Hmmmm, let’s think.

(In the words of Craig David) I went swimming with sharks on Monday, scaled the side of a mountain on Tuesday, entered an Iron Man triathlon on Wednesday, base jumped the Shard on Thursday and wrestled a tiger on Friday. The weekend was mainly a quiet affair. Just a few body pump classes and a bit of caber tossing up North. No, I don’t think I’ve been overdoing things at all.

“I’ve barely left the house,” I said, “I did, however, clear out a kitchen cupboard last Thursday (after the Shard jump) and it took me 5 days to recover. Does that count as overdoing it?” No, I didn’t think it did either.

You see, here’s the frustrating thing about this shitty little disease: bloods tests can often lie. On paper I shouldn’t be feeling any worse than I did before, but in reality, I feel like crap, I hurt all over and staying vertical is a perpetual struggle.

The doctor’s solution on this particular visit? Firstly a possible new diagnosis to add to the list (fibromyalgia) and the suggestion of some different drugs to try. Part of me was rather pleased to make a bit of progress. Part of me was thinking ‘Jesus, how can I possibly consider this progress and why on earth am I pleased?’ But that’s the nature of the beast I guess; sometimes it’s just nice to have a new name to put the pain.

So next up to the table is Azathioprine, an immunosuppressant drug used to prevent organ transplants from being rejected. From my so far limited research, it works by suppressing or reducing the strength of the body’s immune system. In the case of Lupus this is meant to help calm down the pain and fatigue. Of course, the downside of suppressing or reducing the strength of your body’s immune system is that it also makes an already defenceless body even more susceptible to every blinking germ, bug, and virus that’s floating around.

As far as I can see it’s a toss-up between ‘exhaustion and pain’ v ‘hot and cold running infections’. What a cheery choice to make.