It can be difficult to explain to young children what Lupus is all about. Too much information and they’ll panic; too little and they’ll struggle to understand why you’re fast asleep and their dinner hasn’t even left the fridge.
The last few weeks have been quite an unpleasant adventure; a throwback to the beginning of the year. From the moment I retrieved my first Azathioprine pill from the ‘useless medication’ basket on top of the fridge, I felt rank. I’m talking room-spinning, head-pounding, limb-aching, swallow down the vomit sort of rank. A bit like morning sickness come to think of it, with a touch of flu thrown in.
I had been hoping that it wouldn’t be so bad the second time around. Clearly, I was wrong. If anything, those lovely little chemicals seemed to get to work even quicker than before. By the first night, I was woozy and spaced out, by the second day my head felt freakishly large and I couldn’t handle bright lights or noise. By the third day I had ground to a screeching halt; I was as good as useless. I spent the entire day on the sofa, gazing at the cracks on the ceiling and feeling bleak.
Like before, it felt as though I had ice water running through my veins and a pair of car battery chargers clamped to my fingers, releasing wave upon wave of electric shocks through my limbs. My bones felt crushed and my chest felt constricted.
When I did make it off the sofa, I didn’t so much walk as drag my carcass around the house. Going upstairs was a painful exercise, both painfully slow to watch and painfully sore to do. Much like a centenarian climbing a very steep hill, I progressed one very tentative step at a time, pulling myself up by the handrail. It was a pitiful and tragic experience.
By the end of the first week back on the tablets I was gradually starting to adjust. Still absolutely shattered of course (is there any other way to be?) but no longer knocking on death’s door. By the end of the second week I was turning a corner.One more restful weekend and I reckon I’d have been feeling pretty sprightly by now, as I headed into the third week.
But then I went shopping. Or should I say, then I went on an 8-hour shopping extravaganza. It was great to be back out of the house and acting ‘normal’, but what was I thinking. Fun it may well have been; sensible or overly restful it was certainly not.
Thus the third week dawned and lo and behold, I felt like I’d been hit with a sack load of wet cement. Back to Square One, I shuffled, feeling sheepish, silly and incredibly sore. Self-sabotaging mission: complete.
I’m not sure why this dark cloud descended on me one night, nor what started it or where it even came from. How this unwelcome visitor snuck into the house and got past the dog, I have no clue; he normally barks at everything.
At the beginning of last week, I was feeling quite bright; the last of the azathioprine was loitering in my blood stream and I had some spare energy still knocking around. So to make the most of this ‘get up and go’, I did stuff. I did a lot of stuff. I did way too much stuff. And then I paid the price.
By Thursday I was flagging, by Friday it was all too late. Engines off, power down, body into battery saving sleep mode. My ‘get up and go’ had got up and gone. Bugger it, why me and it’s not fair – I hate Lupus.
That day and the three that followed could most definitely be classed as inside the house days. I didn’t really move more than I had to, just a slow scuffy shuffle from room to room. I couldn’t be bothered to do anything, think anything or feel anything. I didn’t want to read, write, rest, eat or brush my hair. Worse still, I didn’t want to talk, laugh or even smile. I’d completely lost my happy.
Sure I’ve had slumps before, but none like this. My mood was as flat as a Dover sole. But why? Everything in my life (health aside) was great, yet I felt utterly miserable, desolate even. I also felt strangely detached from everything and everyone around me, and I didn’t know how to reconnect. Worse than that, I couldn’t summon up the energy to even try to reconnect.
Thank God for my husband, the one who knows me so well. He watched, waited and persevered. He tried every trick in the book to chip away and dig me out from my pit of misery and gloom. It took a painstaking line of questioning, several pick axes, a crowbar and a box of tissues. Oh, and a box of my favourite Lindor chocolates.
Two days on and I’m still not sure what that was all about. Perhaps it all stemmed from my frustration and despondency over the great medication fiasco. Or perhaps my brain was short wiring from months and months of erratic sleep. Or maybe my body was simply objecting to going cold turkey after months on the drugs.
Whatever the reason, I’m hoping that wretched cloud stays well away and doesn’t invade my home or head space again.
Husband: You’re looking tired.
Me: I’m fine.
Husband: I said you were on the computer for too long yesterday.
Me: But I wasn’t.
Husband: Hmmmmm. Why don’t you go have a sleep?
Me: But I’ve got things to do.
Husband: You’re falling asleep against the door frame. Go sleep.
Husband: Open your eyes, walk upstairs, shut the curtains, get into bed and SLEEP.
Me: Ok, ok.
Husband: That’s STRAIGHT upstairs. Don’t look for things to do. Don’t go in your study. Don’t open your laptop. Just go SLEEP.
Me (5 minutes later): Zzzzzzzzzzzzzzzzz
Husband (3 hours later): You slept then? I said you were tired.
After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’
That was it. There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’; no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds. The last time I checked I was on azathioprine, not methotrexate. It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.
So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief. I know, I sound like the character line up for Inside Out. Or should that be:
The more observant among you may have noticed that Joy is missing…
First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit. This all feels like it was for absolutely nothing. The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.
Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way. Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know. Slightly disconcerting.
And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before. Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line. I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back. I started to second, third and fourth guess the decision I’d made. What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?
Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer. I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?
I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me. How very rational and Zen that sounds, even to me!
So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.
Four weeks, multiple blood tests and endless phone calls later and I get the feeling things aren’t going so well. Well, isn’t that just typical. My energy levels are finally up and the pain’s under control, but lo and behold my treacherous body just ain’t having none of it. I ask you, if you can’t even expect a bit of loyalty from your own skin and bones, what hope is there.
I’ve had one set of dodgy blood results after another. One minute I’ve got a low white cell count and poor liver function; the next my white cells are on the up but my bilirubin levels are elevated; the next my liver is feeling happier but my white cells are dropping off and as for my neutrophils, well they’re now going into free fall.
For the record, I haven’t got the foggiest what’s actually going on inside me right now. I know I should probably be all clued up on what’s what, but I haven’t the faintest idea what a neutrophil is, does or even looks like. Or, for that matter, why my GP is currently freaking out because I should have more. Her last message on my voicemail told me to call her back immediately to discuss my ‘abnormal results’. Sugar coat it why don’t you. Naturally, this sent me straight back to panic station central. I’ve decided, I don’t want to be sick anymore. Can someone stop this train and let me get off?
I probably wouldn’t be so alarmed if I thought my rheumatologist gave a damn – but it definitely doesn’t feel that way. From where I’m sitting, it seems that he gave the OK to pump my body full of chemotherapy, then, job done, buggered off to do something more fun himself. Like golf perhaps, or a spot of fly fishing. After years of seeing him religiously every 6 months, I’m now not scheduled to check in with him again till January 2017.
What the hell? Another 8 more months of this stuff and I could have grown an extra limb or a set of gills. Or turned a fetching shade of radioactive blue. I’m thinking something along the lines of Jennifer Lawrence in X-Men, just with smaller, post-breast feeding boobs and considerably less muscle definition.
Rewind to Day 60.
Now here’s a brilliant video that every spouse, family member, friend, colleague and boss should be asked to watch. Under duress if necessary!
Well done and thank you to Lupus UK for summing it all up so brilliantly.
Autoimmune diseases are a bit like buses. You wait bleeding years to be diagnosed with one, and then several roll up at once. Sjögren’s Syndrome (pronounced Show-grin’s) is one such bus. It’s often to be found hanging around with bigger, nastier members of the autoimmune disorder family, such as Lupus and rheumatoid arthritis.
Anything ‘autoimmune’ basically means that instead of protecting the body from infection or illness, the immune system reacts abnormally and starts attacking healthy cells and tissue. In the case Sjögren’s, the body’s immune system attacks glands that secrete fluid, such as the tear and saliva glands.
This shortage of crucial moisture leads to the two main symptoms: dry eyes and dry mouth. For women (who account for about 90% of all Sjögren’s cases) dryness can also be something of an issue ‘down below’. Yup, when it rains it really pours. OK, probably not the best analogy to use in a case like this.
In more serious cases of Sjögren’s Syndrome, the immune system goes one better and attacks other parts of the body as well. Symptoms include muscle pain, joint pain, stiffness and swelling, vasculitis (inflammation of blood vessels) and brain fog (difficulty concentrating, remembering and reasoning). The two worst symptoms (personally speaking) are the crippling chronic fatigue and joint pain. Though to be honest it’s hard to know these days which of my symptoms are coming from the Sjögren’s and which from the Lupus.
While it’s not a killer, having bone dry eyeballs can have a major impact on day-to-day life. If nothing else, it can make you look even more bloodshot and bleary-eyed than normal. Sometimes my eyes get so dry it feels like my vision in completely blurred, even though I can still see perfectly. It’s a horrible feeling, and I find myself constantly pulling my eyelids down to try and ‘shift’ the haze.
The symptoms of dry eyes can be made worse by sitting around in air-conditioning, sharing airspace with a smoker or walking outside in the wind. Travelling on an aeroplane can be sheer hell. Watching TV or staring at a bright computer screen for any length of time (like I’m doing right now) can also become painful. I think this has something to do with not blinking as much and the eyeballs drying out quicker – but don’t quote me on that.
Having a dry mouth is every bit as annoying. It can make your tongue feel like an abandoned flip-flop in the Sahara Desert. No matter how much you swallow or how much water (or whisky or wine) you drink, you’re still parched. This makes your mouth and tongue feel horrible and your lips dry and cracked. It also makes it difficult to swallow. I constantly feel the need to clear my throat or cough up a mucousy fur ball. At times I sound like a retching dog who’s been eating too much grass. Yes, pleasant I know.
Another frustrating knock-on effect from needing to drink all this extra water is the constant need to wee. It’s a standing joke in our family that I will need to go at least twice before I leave the house and then within seconds of the engine being switched off. Lazy muscles after popping out two children don’t help. I’m probably just one violent coughing fit off using Tena Lady.
So what is it like to live with Lupus? Good question and thanks for caring enough to ask; most people never do.
Lupus is an unpleasant little disease that drains the life out of your body and time out of your life. It can result in frequent hospital visits, constant tests and enough medication to make you rattle. It can cause teeth-grinding levels of pain, uncontrollable exhaustion, terrible brain fog, facial disfigurement, dark thoughts, loneliness and an immense feeling of loss. And that’s just the start.
In short, Lupus is a disease that can rob you of the life you planned to lead. Future plans have to be reassessed, expectations lowered and energy levels micro-managed down to the very last ‘spoon’.
This may sound like a rather dramatic synopsis, but it isn’t. It’s actually the harsh reality many Lupus sufferers have to deal with every single day.