A dog walk too far

May 6, 2016September 29, 2016 ~ Rachel ~ 2 Comments

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline. Too many comfort calories and that muffin top is threatening to develop into a brioche. And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself. On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle. All good so far; I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions. And then made the fatal mistake of thinking I could do more than I can. Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa. I never learn, as my husband was quick to remind me. ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out. All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

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’.

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.

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 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!

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.

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.