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!

Day 60: it was all going so well

April 21, 2016September 29, 2016 ~ Rachel ~ Leave a comment

The last five weeks have all been a bit up and down; some days I’ve felt great and other weeks have been a total disaster. The last couple of weeks have been particularly bad, however, but until today I just couldn’t work out why. I knew I hadn’t been ‘pushing’ myself (no base jumping or tiger wrestling) yet the brain fog well and truly descended upon me and I’ve had the energy levels of a snail.

The reason for this became clear, following my third blood test on Monday. I had a call this morning to say my GP needed to speak to me about my results. I admit I freaked out, just a little. In my experience, doctors rarely call you at home to tell you anything you’d actually want to hear. The last such home call I received was from a different doctor, telling me I had to see a neurologist immediately as my life was in danger. But that’s a whole other story.

A flurry of phone calls ensued between my GP, the rheumatology nurses, the rheumatologist and myself. Apparently, my white cell count and my neutrophils were crazy low, and this put me at a much greater risk of infection. I swear I could feel my chest tightening and a tickle in my throat as soon as she told me.

If you so much as cough or sneeze or feel slightly hot or unwell you must come into the surgery straight away, my GP warned me. But I’ll never get an appointment, I pointed out. Consider this a fast past to get in whenever you need, she assured me, just say you have to be seen as a matter of urgency.

Hmmm, look forward to trying that one out on the ~~bull dogs~~ receptionists who man the surgery phones. They seem to regard every enquiry for a same-day appointment as a completely unreasonable and unnecessary request. I once had to throw myself, weeping and wailing across the counter top before they reluctantly ‘allowed’ me to see a doctor.

To cut a long story short, my azathioprine dosage has now been cut by 50mg to see if this will bring my bloods in line. I’m also back to vetting all my visiting friends in case they or their offspring are infectious or sick. My melodramatic self is now picturing having to live in a vacuum packed bubble for the rest of my life. Yes I know, I’ve already told myself to get a grip on reality and calm down.

Rewind to Day 20.

Day 10: feeling bleurgh

March 2, 2016September 29, 2016 ~ Rachel ~ Leave a comment

A week and a half into these meds and I’m feeling absolutely bloody awful.

Skin tone for today is at least fifty shades of grey, with a dash of sickly green thrown in for good measure. If Farrow & Ball were to name the colour, I’d say it would probably be a toss-up between ‘Deathly Pallor, ‘Decaying Corpse’ or ‘Watery Vomit’. To make matters worse, my skin is also purging a year’s worth of impurities. This ain’t good and it sure ain’t pretty.

Things don’t improve much from the neck down. All four limbs feel like they’ve been encased in concrete and my bones continually ache. Random sharp pains are jabbing me in the back. My hands are sore and all scrunched up like arthritic old claws. Body temperature wise I’m fluctuating between early menopausal flushes and Arctic chill.

I think my brain has short-circuited; it’s spluttering along on just the one cell. The most it can deal with today is TOWIE, and even that’s proving a struggle. God help me, I am in trouble.

Yup, it definitely feels like I’m grinding to a halt here. What the hell is happening in there? And how much worse does it get before it starts to get better?

Rewind to Day 7. Fast Forward to Day 20.

Day 7: troublesome hormones & tardy tooth fairies

February 29, 2016September 29, 2016 ~ Rachel ~ Leave a comment

It’s now a week since starting the Azathioprine and there’s still no sign of the green scaly skin, tail or special powers. More importantly, there’s still no sign of nausea either. The dosage does however double today, so there’s still the chance I’ll be inhaling ginger biscuits by bedtime.

I had yet more interrupted REM sleep last night, though this time is was down to a 2am tooth fairy panic. Mid-dream I suddenly remembered that the bloodied offering from my son was still sat awaiting collection at the end of his bed. Tempting as it was to blame this on a tardy Tinkerbell, I staggered downstairs to fetch a coin and write a fairy thank you note. Admittedly I could have skipped the note (this bit involved bright lights and a hunt for a pen) but tiredness is never an excuse for bad manners. By the time I swapped the canine for cash and returned to bed I was wide awake.

So here I am, still feeling dog tired and looking rough. Of course, there’s nothing unusual about that. It’s a Lupus + chronic fatigue + monthly hormone thing. Obviously I didn’t (but probably should have) calculate exactly what time of the month it was before starting these new pills. This being the week I normally sleepwalk through the day and neck painkillers like smarties for the pain in my hip. Incidentally, I’m still waiting for a doctor to explain to me why my overactive monthly hormones cause me to flare up in this way.

Normal tiredness aside, my body has felt extra rung out this week; more battered around than usual. My head has also felt a little extra woozy and a lot foggier in the brain department. But all-in-all, physically speaking, everything seems to be going OK so far.

Perhaps the hardest bit to deal with has been knowing I’m on this stuff. It’s the unnerving knowledge that my immune system will now be ‘suppressed’ and my body is much more vulnerable to attack. I’m already eyeing up everyone who coughs and sneezes within a 100-metre radius; to me, they’re a potential threat.

Being this tired every day means you spend rather a lot of time horizontal, dreaming up one possible undesirable scenario after the other. I am currently picturing my already traitorous blood cells (who throw all of their energies into attacking their host body), now picking up their placards and going on a strike. And without them, my body becomes an unmanned, unprotected hotspot for every passing bacteria, germ, and virus looking to invade.

How can this scenario possibly end well?! Now, where did I put that face mask?

Rewind to Day 3. Fast forward to Day 10.

Day 3: looking like death

February 24, 2016September 29, 2016 ~ Rachel ~ Leave a comment

What a difference 50mg of something horrible can make.

Last night I woke up at too bloody early o’clock. From 4am to at least 5.30am, I lay there, panicking because I couldn’t get back to sleep. It didn’t help that my husband had hijacked half my pillow and the dog was talking in his sleep.

Unsurprisingly I woke up this morning looking and feeling like absolute shit. Death warmed up, I think would the appropriate terminology. Actually, make that death warmed up, reheated, eaten and then regurgitated all over the floor.

Had someone come to my front door today they would have been greeted by a yawning, pale and clammy looking individual with puffy hamster cheeks (my husband’s words, not mine) and eyelids that drooped below my eyelashes. Definitely not a day for selfies, that’s for sure.

Having felt pretty good since starting the Azathioprine on Monday, I’m hoping today was a result of sleep deprivation, not a sign of things to come. On a positive note, there’s still no sign of the nausea I was dreading. I’ve already put in 8 collective months of morning sickness over the years so I can well do without any more of that, thank you very much.

Rewind to Day 1. Fast forward to Day 7.

Day 1: down the rabbit hole

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

Ok, enough with the faffing. My level of indecision has reached such ridiculous heights it’s threatening to bring on my vertigo. I’ve finally decided to grow a pair, take the damn pills and sit back and see. Just how bad can it be?

A couple of things helped me make up my mind. First up was the feeling that I was being selfish. If Azathioprine offered a shot at living a more ‘normal’ life, then I certainly owed it to my children to give it a go. This could be my chance to stay awake for what’s left of their childhood before every one of their memories involves a sleeping mound under the blanket. It’s time to think and act in the present. Any worrying health problems that may lurk in my future (or my overactive imagination) will just have to be dealt with further down the line.

Secondly, I asked the advice of those ‘in the know’. No, not doctors, those with more of a clue. Medical professionals may be trained and have letters after their names, but in all seriousness, who’s in a better position to tell you how it is: someone who dishes out the toxic tablets but doesn’t ingest them or the poor sods who already take them.

With this in mind, I sent out a plea for advice on a Facebook Lupus page. Straightaway I was inundated with positive replies, encouragement, and reassuring advice. There was just the one negative response, citing liver damage, so I quickly skimmed over that before my paranoia had a chance to take hold.

‘Take it, do it’ was one person’s advice. So this morning I did.

I felt a little bit like Neo inThe Matrix. If I take the green pill, I get to stay in Wonderland and see just how deep this rabbit hole goes. Here goes nothing.

I’m not quite sure what I was expecting to happen after I swallowed it. A drum roll perhaps? Or maybe for my skin to turn green and scaly and a forked tail to suddenly grow? After months of worry and stress, it all felt like something of an anticlimax.

Perhaps the biggest let down was finding out that despite disappearing down the rabbit hole, I’m still unable to move in slow motion, stop bullets mid-air or walk upside down on the ceiling. I reckon Morpheus was dealing much stronger stuff than my rheumatologist can lay his hands on… Fast forward to Day 3.

Living like an ostrich

February 20, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Since my last post I’ve been hibernating; hiding away through the darkest, coldest, wettest months of the year. Pretty much ignoring the rest of the world, if the truth is told. Not very good for the social life or the soul I know, but solitude was what was needed. Now the sun, squirrels, and daffodils are back out I feel it’s time to get on with the year.

First on the agenda for 2016 is to pull my head out of the sand and deal with the pressing issue at hand: Shiny new medication. To take or not to take, that is the question.

Back in October, a lovely little drug called Azathioprine was offered up for grabs. Obviously, I agreed to give it ago (it seemed the polite thing to do). I duly picked up my first stash, brought them home and flung them into the kitchen cupboard.

Four months later and there they still lurk, tucked away behind the first aid kit, some leftover One Direction party cups and enough (unopened) alcohol to fell a perfectly healthy liver. Alcohol, it has to be said, I’m clearly never going to get around to finishing off if I start taking these pills.

Apparently it takes 3 months for Azathioprine to kick in and start making a difference. So had I started taking the stuff straight away I could have felt like a whole new woman by now, or at the very least, half of a whole new woman. But like with most medicinal items, they only get to work when they’re inside your system, not sat when they’re sat in the box.

So why haven’t I got on with it? Good question.

During these past few hibernating months I’ve done an ‘ostrich’. I buried my head firmly in the soft furnishing and pretended the tablets weren’t there. Not a very sensible, grown up thing to do, I know. I’ve honestly had every good intention of popping the first pill out, and on the days and weeks when the pain got way out of control, I regularly convinced myself I’d start tomorrow. Then I’d sleep on it, bottle it and change my mind.

The reason for this is quite simple: fear. Fear of taking such a ‘serious’ drug; fear of the short-term nausea, fear of the long-term side effects, fear of an even more useless immune system, fear of catching every passing bug, fear of shingles, fear of my liver failing. And let’s not forget the fear of going back to my rheumatologist without having done what I’ve been told.

So there it is. You name it, I’ve feared it. Looks a bit ridiculous when written down I know, but deciding whether to ingest horrible chemicals into your body as part of an ongoing daily routine is a hard call to make. Especially when you alone can make that call.

Worrying about it has stopped me sleeping properly. It has niggled away at the back of every thought. It has made me analyse and over think, and then analyse some more. And so the ostrich has remained, hoping that while it’s head remains firmly buried, the whole blinking problem will just go away. Eventually I bit the bullet…

Lists v Lupus

October 7, 2015September 29, 2016 ~ Rachel ~ Leave a comment

I love writing lists, always have. Getting things achieved, ticking them off and giving myself a smug pat on the back at the end of the day. Some weeks the lists are the only way to get anything done; they motivate me out from under the blanket and away from Come Dine With Me and Escape to the Country.

Today was a good day and I started off with more energy than usual. It’s fair to say I was positively brimming with great intentions. So I made a list, quite a long one in fact.

Things to do ranged from the quick and easy ‘clear up breakfast’ and ‘reply to email’ to the slightly more ambitious ‘make soup’, ‘do washing’, ‘sort legs’ (tired shouldn’t really be an excuse for hairy) and ‘put stuff on Ebay’.

This last item on the list was probably the most ~~unrealistic~~ ~~delusional~~ challenging of all, due to the ever-growing stack of unwanted clothes in the corner of the room. A stack that now looms so large it threatens to permanently flatten the pile of the carpet underneath.

Unfortunately, by the time I’d finished my first tea of the day my ‘great intentions’ threw in the towel and decided to lay down for a rest. So eight hours later there was only one item crossed off my list. Not bad you might think until you learn the only completed task on my list was to ‘Make a List’. At least I did that well.

The important thing to remember (as my husband keeps telling me) is not to get too frustrated; to accept my limitations and pace myself. Live like a sloth, basically. I think it’ll take me a while longer to recognise what my body can and can no longer do. I am however happy to accept that everything on today’s list can always be done tomorrow. Or the next day. Or even the day after that. Or failing that, by somebody else altogether!

Letting sleeping dogs lick and lie

October 1, 2015September 29, 2016 ~ Rachel ~ Leave a comment

Today my body refused to do as it was told. Logic and parenting instincts told me I really did have to get up when the alarm went off at 6.50am, but my arm still hurt after its stabbing yesterday and my head appeared to be glued to the pillow.

Any grand plans I might have had that day went right out of the window. Nothing unusual there. I ended up sitting in a chair in the window, nodding off in the sun like an old woman. Or a cat. When my limbs started to contort to the shape of the furniture I accepted defeat and ended up on the sofa.

Totally impossible to stay awake at this stage of the game; I hit that metaphorical wall and disappeared deeper under the blanket. Chronic fatigue is like being injected with anaesthetic. One by one, my limbs become dead weights as ‘sleeping serum’ seeps through the body and knocks you out. Bloody horrible feeling, not dissimilar to being encased in concrete, I should imagine.

With his chances of a trip to the park now ranging from slim to none, the dog gave up pacing the room and settled down next to me. He stretched out on the sofa and methodically licked each and every inch of his fur clean. Pretty sure this was his payback for the lack of a walk. The noise of the licking was like the drip, drip, drip of water torture, but I didn’t have the energy to bat him away with my foot.

Interesting how the dog still felt it important to look presentable, even if no one was going to see him that day. Couldn’t really say the same for his now comatose owner. I’d already encountered plenty of people that morning and had yet to brush my hair.

Not much else happened from here on in. I had a dream that I was desperately trying to get to sleep but was in too much pain. I woke up with a start to find I was crushing my poorly arm; it now hurt even more. The dog was patiently sat there, staring at me. I staggered out for the school run and a few hours later was back in bed. My hair remained much the same.

Some days you really just have to set your expectations low. Very low. Or better still, horizontal.