The two faces of Lupus

June 1, 2016September 29, 2016 ~ Rachel ~ 6 Comments

These days there are definitely two versions of me: the ‘inside the front door’ me and the ‘facing the world’ me. Same species, same person, same DNA, but oh my, you wouldn’t believe how different I can look.

My ‘inside look’ is quite a sight to behold: yellow/grey/green tinged skin; hooded, burning panda eyes; well past needing a wash hair, dragged up into a top-knot; a chicken legged hobble when I walk. And then there’s the uniform of the chronically ill: the baggy t-shirt, hoodie, all-day pajamas, tracksuit bottoms, leggings combo. Plus fluffy socks and slippers, obviously. Wearing a bra very much comes down to the mood on the day and how much extra effort will be required.

Very few people are unlucky enough to be subjected to this terrifying, unfiltered version of me. My husband and kids take the brunt of it, and they’re so used to it now that, god love ’em, they don’t even flinch. The postman is also subjected, but I do tend to hide behind the dog when opening the door.

On the odd occasion, this ‘inside look’ has actually made it past the end of the drive, but I do try to limit this to the ‘beyond too tired to give a shit’ days. Normally these outings involve the school run when I scuttle into the car wearing completely inappropriate night-time clothing and large dark glasses. My poor daughter only has to spot me from across the car park, slinking down behind the wheel, to know what sort of day it’s been.

These momentary blips aside, when I head out with a chance of meeting people I will always make an effort to spruce up. If for no other reason than when you look like death, people have to pretend they haven’t noticed, and it all becomes a bit awkward.

My ‘outside the house’ look is a throwback to the pre-Lupus days. Preparation for this is like an episode of DIY SOS, sponsored by Batiste dry shampoo and the entire Bare Minerals range. First up is the need to change into items of clothing that aren’t shaped like a bin bag and made entirely out of misshapen cotton, lycra or fleece.

Then there’s the makeup. Thank god for the makeup. It can take a skin tone from exhausted, jaundice chic to healthy, sun-kissed glow in a matter of minutes. The trick, I have learnt, is not taking the transformation too far. Like I did a month or so ago when my husband felt the need to point out I was looking a little too ‘just back from a holiday’ for the middle of an English winter. Hair straighteners are a must, obviously. Finally, remove slippers, add shoes and ‘ta daaaaaa’. From half dead to healthy looking in a jiffy.

But here’s the bugger. The moment you make an effort to look like a healthier version of yourself, people think you’re cured. Or worse still, they think you were never really that sick in the first place.

“You’re looking great, are you feeling better then?” they ask. Now there’s a tricky one to answer. Your illness is not their problem and of course they mean well, but…

“No, definitely still sick, just caked in makeup, rattling with pills and forcing a smile,” would be the honest reply. But who wants to hear that, it’s a guaranteed conservation killer.

I’ve found it’s best to just keep it simple and lie. “I’m fine.” usually does the trick.

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!

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’.

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!