Grumbling Stomach v Patient Care

November 10, 2018 ~ Rachel ~ 4 Comments

Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear. As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency. They go something like this:

I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard. I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait. And wait. And wait. I eventually get summoned.

I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given). He flicks his eyes across my notes and promptly declares that my bloods are looking good. Less than two minutes after entering the room I am leaving it. All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted. I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.

Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me. I think perhaps it’s the overpowering God complex they use to hypnotise patients with.

I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me? And what about male patients? Do they let themselves get steamrollered too? Answers on a postcard – or in the comments below!

Anyway, where was I? After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes. I also realise I don’t have enough coins to pay. So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.

The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip. The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.

Like seriously? Is there anything more annoying than being made to pay for something that you don’t even have to?

On this last trip, for the first time, I decided to take my husband with me for back up. I thought perhaps this might counteract all that testosterone swirling around the room. I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.

Sadly, on this appointment, it was not to be.

Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early. The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’. Had he heck, a meeting with his stomach perhaps. My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.

I know! What a bloody liberty! The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me? After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.

As it turned out, he and his grumbling stomach had done me an almighty favour. As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions. Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia. Halle-bloody-lujah.

He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain. He then referred me to the pain clinic.

Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day. For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.

When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.

So that’s one small step for (chronically ill) me, one giant leap for womankind.

signature ribbonSM

What is the point?

May 24, 2017May 25, 2017 ~ Rachel ~ 7 Comments

Sometimes it feels that people are constantly telling me how best to ‘beat’ this thing. Doctors, nurses, specialists, family, friends – all telling me how to get the illness in check and under control. All offering up an opinion. All offering up advice. All telling me what I should be doing. All reprimanding me for not doing what they say.

But I try to do what I’m told, I really do.

I rest. I sleep. I take it easy. I take a break. I rest. I do things in moderation. I don’t push myself. I rest some more. I pace myself. And then repeat.

That last one’s the worst. Pace yourself they all say. How is one meant to ‘pace’ oneself in a normal, everyday life? What about the kids and family and home and work and pets and school runs and sports fixtures and all the other crap that comes in between? How do you pace this little illness into that gigantic mix? Please, someone, do tell. What exactly is meant to give?

Even if I do make myself do all the above – the resting, the breaks, the endless sleep, it still gets me absolutely bloody nowhere. All the pacing in the world and it achieves what? A couple of ‘good’ days to get stuff done and then a week of feeling like absolute shit while my body struggles to get over the unexpected exertion.

Moderation. There’s another word I hate. I am sick to death of trying to live a life in moderation. It’s like setting out to only ever achieve half of everything you want to do. For a task-loving, goal-oriented person like myself, this is the very definition of frustration.

Oh yes, while I’m at it, I’m also completely over being told I should of ‘learnt to know better by now’. Two words to that one. Bugger Off.

I did already learn long ago that this moderating, pacing and enforced rest doesn’t really work. I get why those living in a logical think it would, but it really doesn’t. I’ve learnt that truth the hard way – and on a regular basis, in fact. Living like a sloth can usually buy a day or two, or a week tops, but that’s really about it.

But anyway, here’s the thing. It’s not really the ‘learning’ to pace myself that I have an issue getting to grips with, it’s the acceptance that I have to do it at all. The acceptance that there will always be limitations of one sort or another. And with that comes the realisation: I’m never going to be able to climb a mountain, or walk for miles and miles along the beach, or hold down a full-time job, or even hit the town and dance till the sun comes up. OK, granted, the mountain climbing was probably never going to happen, but it’d sure be nice to do all the rest.

What a dismissal, depressing and utterly uninspiring prospect this acceptance malarkey can seem. Who in their right mind would ever want to do it?

So like I said before – seriously, what is the point?

‘Top 10’ things that chronic fatigue ISN’T

December 14, 2016 ~ Rachel ~ Leave a comment

Following on from the last blog about unwanted opinions, here’s my ‘Top 10’ list of all the things that chronic fatigue isn’t.

Feel free to print it off and wave it around in the faces of all those doubting non-believers! Better still, why not download the PDF, print onto A3 paper and stick multiple copies around your home or place of work!

When opinions come thick and fast

November 30, 2016November 30, 2016 ~ Rachel ~ 1 Comment

There are just so many helpful people out there in the world, all rushing to give their opinion on what chronic illnesses are or aren’t, and what they think will cure them. Opinions that are, more often than not, based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated medical condition. A condition that was (according to Bella magazine) miraculously cured by dancing naked in the moonlight whilst chewing on the roots of a cactus plant.

Granted, sometimes these opinions do come from a place of caring and concern, but that doesn’t mean they sound any less patronising, insulting or annoying. Accusatory is how they often come across. Like we’re somehow greatly exaggerating how we feel. Or perhaps all these ailments are really just in our heads. Or maybe there’s a glaringly obvious solution that we simply haven’t bothered to find out about for ourselves.

“You haven’t got the first bloody clue. Please remove your interfering beak from my business“. Is what you want to yell. But you don’t.

Who knows, perhaps it’s human nature that makes people always feel obliged to offer up an opinion or want to ‘fix’ things they don’t fully understand. A bit like a man, I suppose, who when presented with a problem, will always try to solve it, instead of just dishing out the sympathy that’s required!

Having read countless posts on countless Facebook forums, it would appear that the majority of these uninvited and insensitive opinion givers are often those found closest to home: the spouses, parents, siblings and friends of the chronically ill. People, in other words, who you’d expect to be offering empathy, sympathy and a whole lot of understanding.

I think the trouble here lies with so many of these conditions (Lupus, Sjogren’s, fibromyalgia, CFS, chronic fatigue, chronic pain etc) being an invisible illness – and one that often involves two very different faces. So unless the opinionated person in question has seen firsthand the fatigue or symptoms at their very worst, they can’t even begin to comprehend how life-changing and debilitating such a disease can be.

On the other hand, all these unsolicited opinions could just be down to that person being a thoughtless, self-involved, mentally draining, arrogant arsehole. And if that’s the case, telling them to sod off out of your life is probably the simplest solution of all.

Oh, give me strength

October 19, 2016October 18, 2016 ~ Rachel ~ Leave a comment

Forgive me while I scream.

Back in August, I clocked in at the hospital for a check up with my Lupus nurse. It was one of those ‘we understand, we care’ sort of appointments. I told her how let down I felt by those overseeing my healthcare. I mentioned I was concerned about my periodic bouts of doom and gloom. I said I was worried the Azathioprine might not be doing its job.

Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.

Then yesterday I received two letters in the mail. The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience. The second letter said my appointment had now been re-booked. For 8th August 2017.

2000 and bleeding 17. I admit I did a double-take on the year. Then I swore.

How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.

I’d like to say I was shocked to the core, but I’m not.

My Azathioprine Adventures

October 8, 2016November 21, 2016 ~ Rachel ~ 2 Comments

It’s been a while since I threw myself down the Azathioprine rabbit hole, so perhaps it’s time for a quick recap of the ‘fall’ so far.

In a nutshell: finally got a prescription, acted like an ostrich, started meds, felt like shit, got used to meds, bloods went loopy, got taken off meds, 3 weeks of cold turkey, back on meds. Makes my head spin just thinking about it. Makes my head spin just thinking about it.

Follow my journey into a Lupus-filled sort of Wonderland:

Jeez, make up your mind already.

June 18, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Today I received a letter that made my eyebrows shoot up and my hackles bristle. Three weeks after being told (via a nurse on my voicemail) to come off my Azathioprine, my rheumatologist now tells me (via a letter to my GP) that I didn’t actually need to stop them at all. Please ‘start them up’ again, the letter said.

Just like that, as if it’s as easy as popping Smarties. Give me strength. Every time I tell myself that those in charge of my health couldn’t cock it up anymore, they seem to find new ways to surpass themselves.

In the letter, there was no reference to the fact I shouldn’t even have been told to stop taking them; or that the nurses who told me to do so clearly didn’t get their instructions from him: the man in charge. There was no acknowledgement that if my GP hadn’t bothered to write to him in the first place, he’d have been unaware I was even off the drug. Rather alarming, that.

There were certainly no apologies for unnecessarily messing around with my treatment. And of course, no thought of the fact that ‘starting up’ this drug is a horrible, painful process that takes many months of adjustment and makes you feel like a big pile of cold sick. Or, that having to come off this drug for no apparent reason has resulted in another equally unpleasant and painful few weeks.

No, none of that. Just a ‘please tell her to start it again’. Now, what was I saying about needing that Empathy class again?

To make it all that little bit worse, it took them an age to even let me know. For some unknown reason, it seems the hospital department can manage to pick up a phone and ring me when passing on the wrong message, yet when it comes to putting it right, that has to be done via snail mail. And by second class, it would appear.

A whole bloody week it took them to dictate, type up and post that letter; then another three days till it landed on my doormat. Where’s the logic in that? A simple 30-second phone call would have gotten me back to where I needed to be an awful lot faster, and spared me that extra seven days of cold turkey blues.

So here we go again. First I had to psych myself up for starting the Azathioprine, then I had to get used to feeling like death. As soon as I was feeling better, I had to deal with coming off them again – and go back to feeling crap. Now, I’m back at square one and preparing to start all over again.

Am I feeling amused? In a word, no.

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.

I’m not lazy, I have Lupus

May 2, 2016September 29, 2016 ~ Rachel ~ 3 Comments

One of the more annoying things that people can say to me is ‘wouldn’t you feel much better if you exercised more?’ To me, that sounds an awful lot like ‘heave your untoned arse off the sofa and stop lazing around every day’. But maybe I’m just being paranoid?!

Hmmmmm, exercise they say? Now that you mention it, it does seem like the most obvious of cures.

Silly, silly me, how could I – or my doctors, come to think of it – not have thought of this sooner. Let me flush all these unnecessary prescription pills down the loo, skip to the gym and body pump this chronic disease right out of my system. Perhaps I could jump up and down, take a run, climb a rock, go for a swim or crunch my body into submission. Who knows, once I’ve zumba-ed my way back to perfect health, maybe I’ll be able to walk on water, or, better still, turn H20 into wine!

I nod and smile through gritted teeth. Yes, I agree, it would definitely be good to do more regular exercise, but sadly that’s not always an option for me. Most well-meaning and tactful people stop dishing out advice at this point. But there’s always one. The one that never knows when to reel it in and zip it up. These people I could happily slap.

But why not, they want to know. Exercise is ever so important they say.
Hold the press, groundbreaking theories being formed here: Had I considered, perhaps, that it is my very lack of exercise that’s making me ill?

Had you considered, perhaps, that you’re getting on my very last nerve?

Have I tried a particular type of yoga? they enquire. It’s called the Born Again Dying Swan and it’s all the rage. Originates from the monasteries of ancient Tibet, apparently; best-practised butt naked and balanced on a 2-foot pole in temperatures of exactly 89.9 degrees. Cures cancer and better than botox, so their best friend’s mother’s nutritionist said.

OK, enough now. I know in your head you’re trying to mean well, but out here in my world, you’re not. Please just SHUT UP. Why? Because in this instance you have absolutely no clue what you’re talking about.

Clearly, I know that exercise is good for you; it stops you getting fat and keeps you healthy. Yes, I also know it can make you feel energetic, pumped up and happy to be alive. But here’s the bit you don’t get. For some people (that would be me) it can also wipe you out and leave you in a whole heap of pain. A gentle walk or an overly ambitious bout on a yoga mat can cause joints to swell, nerve ending to burn and limbs to feel like they’ve been shrouded in concrete. It can make my arms hurt and my bones ache. And as for those incredible little endorphins that exercise releases? Believe me, when I tell you they’re simply no match for out-and-out, dog-tired exhaustion.

So yes, exercise is good and healthy and fun. And yes, moving faster than a sloth on a regular basis would no doubt do wonders for my pathetic muscle mass and wobbly bits. But here’s the issue I have: there is simply no way of telling how much is too little or too much. An extra 10 minutes in the wrong direction with the dog can be my undoing; there are no warning signs and there’s no going back.

So please people, quit with your well-meaning advice and consider this. Living an often sedentary life is most certainly not a life choice. It is frustrating, boring and incredibly depressing. Every single day I miss what my body used to be able to do and it often makes me cry. In the good old days, I used to spin, swim, gym and downward dog with the best of them. Hell, I even kickboxed my way around the mat once upon a time.

So believe me (and every other medically induced couch potato) when I say nothing gets our backs up more than being told exercise will ‘make us better’. No one is more clued up on possible treatments and ‘miracle cures’ than us, and if it were as simple as that, don’t you think we’d be out there pumping, squatting and peddling along with the best of them.

A little bit of sympathy and understanding, on the other hand, would go along way to making us feel better. Ditto for flowers, chocolates, and dropping by for a cup of tea when we’re feeling low!