Vampires, superpowers and surviving the summer

The UK is currently celebrating something of a rare phenomenon: the skies are blue, the temperatures are up and, for the first time in an eternity, the bank holiday weekend isn’t a total washout.

I love this weather, I really do.  Everything always seems so much easier to achieve when the sun’s out.  Sadly, however, this weather doesn’t really love me.  Aside from the heat making me feel triply sluggish, going out in the sun can be an incredibly risky business indeed.

One of the many annoyances of having Lupus is being extremely sensitive to sunlight; this is called photosensitivity.  For many, exposure to sunlight can make symptoms – such as rashes – much worse.  In my case, the pigmentation on my face darkens with lightening quick speed.  A quick, unprotected trip outside and I look like I’ve been stamped on the forehead with a triangular branding iron.

The strange shape of this pigmentation is something of a mystery, both to me and the dermatologist who checked it out.  I’m guessing that either I fell to earth from Krypton and have undiscovered superpowers, or it’s some sort of magic inner eye. Either option would be acceptable and more than welcome.

Unusual markings aside, if my ridiculously sensitive skin is exposed to the sun it soon starts to tingle and feel like it’s on fire. Well, I say fire, but actually, it’s more like a freezing cold case of prickly pins and needles.  I imagine this is how vampires feel – or at least it’s how they are portrayed in the Twilight films, when their skin glows and sparkles in the sunlight.

Spending too much time in the sun can also bring on a Lupus  ‘flare up’ and make me feel downright grotty. This can be accompanied by full-on flu-like symptoms that can knock me out for days.

Taking Azathioprine makes me that much more sensitive still.  I reckon my skin now starts to burn before I’ve even put my shoes on and headed outside.  Take this morning for example.  I walked around the garden once and sat down for 5 minutes with a cup of tea.  Now that I’m back inside, my arms are already cold, tingling and deciSickandalwaystired.com Sundedly sore.  This is both frustrating, annoying and painful, in equal measures.

Yes, it’s safe to say the days of dousing myself in tanning oil and sizzling like a sausage on the beach are long gone.  I shudder at the thought of all the damage I must have caused my young skin in those heady, uneducated days of the 80’s and 90’s, when everyone smelt like Hawaiian Tropic and looked like overcooked bacon.

These days it’s all about finding a fake tanning product that gives me the right colour.  I’m aiming for a ‘realistically sunkissed’ shade rather than a ‘baked in a tandoor’ Trump toxic glow.

The pluses of being so sun sensitive are that I have no choice but to stay out of the sun as much as possible; this helps to keep the crows feet at bay.  On the negative side, however, the additional sensitivity brought on by taking Azathioprine increases the risk of skin cancer.  A pretty major ‘negative’ I know, but one I really have no choice but to take. These toxic drugs I pop every day are helping to make life much more bearable and relatively pain-free.  It’s all swings and roundabouts, as they say.

When living the life of a vampire, all you can really do is be sensible, resist the urge to top up your tan and make sure you protect yourself any which way…

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Highs and Lows of Lupus

Yes, I am alive.

The daffodils have long since sprouted, bloomed and faded and I’m still sat here in my fleecy lined pants, waiting for the year to crack into gear and get going. Alarmingly this seems to be a bit of an annual thing now. I’m not sure if it’s down to age or the illness (or a bit of both) but one second I’m packing up the Christmas tree, next, I’m looking up from life and thinking ‘bloody hell, it’s half way to June already’.

During February, March and much of April I plodded along quite well – not quite bouncing off the ceilings, but pretty upbeat most days.  The pain was reduced and for the most part, the exhaustion was fairly manageable. Little Miss Hope even raised her head there for a while.  Bless her for trying.  Clearly, she’s one of the more optimistic of the Little Misses bunch.

Then, 3 weeks ago, a variety of shit happened – the sort of stressful, unwanted shit that life likes to vomit up at us from time to time.  My body, in response to this shit, decided that it really couldn’t be bothered to deal with that extra hassle.  So, just like that, it shut up shop and switched to Low Energy Mode.  My batteries basically went from ‘Bunny’ to ‘Dodo’ in the blink of an eye and I found myself back in my ‘can’t think, can’t speak, can’t function’ dormant state of complete and utter uselessness.

Just like that, Little Miss Hope went scuttling off into the sunset and Little Miss Dozy moved her duvet and pillow back in.  So much for that optimism, they’re a fickle, cold-hearted bunch, I have to say.

3 weeks on and there’s bugger all I can do to get myself out of this slump.  I’m living in a fog where the exhaustion brings back the pain, the pain brings back the black clouds and the blue moods make everything seem that much harder.  Right now I’m so bloody tired I could curl up, cry and sleep through to Christmas. The Christmas at the tail end of 2018.

The annoying thing is that during my brief good spell, I kept meaning to write a positive post about how the meds were working wonders.  But, as is always the case, when I’m feeling a bit better I always use that precious energy to get a load of other stuff done.  Plus, if truth be told, when I’m feeling ‘up’ the very last thing I want to think or write about is feeling down.

But hey, now I’m back to this largely horizontal state again, life’s all about the Lupus, Sjogren’s and bleeding Fibromyalgia.  So while I probably don’t have the clarity of brain to put one correctly spelt, relevant word in front another, I might as well get this blog back on track.  If nothing else, it might stop the onslaught of WordPress emails that remind me I’ve gone to ground; they repeatedly tell me to keep my followers informed.

Why you lovely people (who’ve taken the time to follow my blog) would actually want to be informed about my health related crap, I have no idea!  But thank you, sincerely, for showing support.  I was starting to wonder if there’s even a point to spilling my guts and whining all over the web in this way, but I guess if even one person can relate and nod their head in agreeance, it makes it all worthwhile.

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It’s all a bit (fleecy lined) pants

January is one of those months when nothing really happens, it’s all just a bit blah. One minute you’re cramming a too big bird into a too small oven, the next, you’re realising that February is about to happen. Once again you ask yourself: What the hell happened there?

Was January shorter this year? Did I sleep through a week and not notice? Did we ever finish off all that turkey? Creme eggs already? Really?

For me, the weather plays a rather large part in this black hole of time. So cold has it been lately that I’ve only left the house when absolutely necessary. School runs and the occasional trip to support sporting offspring fall into this category. Clearly, I braved the post-Christmas sales as well, but that’s also a ‘necessary’.

Each day in 2017 I’ve sported exactly the same ‘dressed for warmth, not style’ combo: fleecy lined yoga pants (yoga mat not required), furry lined hoodie, furry lined slippers and thick fleecy socks. When needing to leave the house, so many additional layers of fabric are required that I struggle to bend over and pull my boots on. Aforementioned sporting trips involve jeans over yoga pants, multiple thermal vests under hoodies and two additional pairs of socks inside the fleecy ones.

Do I look like a blue whale packing some extra winter blubber? Most probably. Do I really care?  Nope. Far too cold to give a shit. Have I showcased any of my ‘must make more of an effort to look stylish’ new sales purchases? Erm, no.

So about all this January blah-ness. I think it probably comes down to motivation; I know that I definitely lost mine. I suspect it might have been thrown out with the Christmas wrapping paper by mistake. It’s probably languishing at the bottom of a recycling skip right now, waiting to be pulped. Or worse still, buried in some godawful landfill with a pile of stinking nappies.

Sorry, I digress. Back to the blah.

For once, I can’t even blame it on the dodgy health. So far this year I’ve had great days, mediocre days and ‘don’t you dare even try and wake me up’ days. For the most part though (touch wood) the tablets are still doing their thing. Of course autoimmune is no friend of winter. My joints feel more inflamed in the cold. My mood dips when the sky is grey. My fatigue is ramped up by the central heating. My fingers often look like a rotting corpse.

It’s safe to say I probably won’t have much of a spring in my step until… well, until Spring. When the first daffodil is brave enough to claw it’s way out of the earth and face the world, I’ll consider doing the same.

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Day 274: hibernation here we come

Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.

On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report.  The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…

Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic slothitus fatigue, more’senergy-meter-sick-and-always-tired the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.

Ok, that sounds a bit bleak, I admit.  What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done.  That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.

The approaching winter is, however, definitely throwing up a few curve balls.  During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between.  Is this down to the Azathioprine?  I’m not entirely sure.

Having put the infection and headache behind me, I promptly came down with the flu.  Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.

Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me.  Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.

With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter.  I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.

So I choose to stay inside, dress in fleece onesies and whack up the thermostat.  A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog.  But turn off the heating and the Raynaud’s and general miserableness kicks in.

I think that’s what you call a lose-lose situation.

So, what pray is the answer?  Rethink my choice of drugs?  Completely avoid civilisation?  Wear a full germ resistant biohazard suit?  Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?

Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.

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Get outta of my head

Today was the first day in over a week that I woke up and didn’t wince.

For the last 8 days I’ve had a killer headache that just wouldn’t shift. A migraine-like nightmare that has made me sound sensitive, light-sensitive, heat sensitive, people sensitive and living sensitive.

headache-sick-and-alwaystired-comIt’s felt like a 100lb block is crushing down on my scalp, sharp spikes are stabbing into my eye sockets and a metal band is wrapped around my forehead – a metal band that some sadistic little bastard is screwing tighter and tighter into my temples every time I move.

This has made me feel nauseous, dizzy and as grumpy as hell.  It’s hurt to look, think and move, and as a result of this, I haven’t been able to really do anything or go anywhere. I’ve mainly moped from room to room, moaning a lot and clutching my head. Writing anything was pretty much out of the question, as sitting in front of my computer screen was like staring at an eclipse with my eyelids taped open.

Every morning last week, I opened my eyes, reassessed the pain levels and thought ‘shit, here we go again, there’s another day ruined.’  When there’s no end in sight and the tablets aren’t even making a dent,  8 straight days of headache can seem like an eternity.  That’s 192 hours, 11520 minutes or 691200 seconds of feeling like utter crap. For heaven’s sake, we’re told God created the entire universe in less time than that, including the 7th day when he sat back, relaxed and admired his work.

Sadly, I am all too familiar with the whole ‘headache’ scene.  I spent a large chunk of my childhood experiencing the varied delights that a migraine has to offer: flashing lights, dancing black spots, exploding head, spinning rooms and wall-to-wall puking. Thankfully I rarely get a fully blown migraine these days, although they have been known to creep up on me in seconds if I do something foolhardy.  Like, tilt my head back, for example.  Lesson certainly learned that particular day: never attempt to paint a ceiling.

A trip to the Vatican’s Sistine Chapel a few years ago also proved rather pointless, when I realised I was unable to look up and see the paintings on the ceiling – the paintings being the very reason for the visit in the first place.  Of course, by the time I’d walked a good 3 miles through museum’s long (and frankly boring) corridors to get to the chapel, my hips had long since given up on me and I had to limp into the room and have a sit-down.  Adding insult to injury, after lining up to touch St. Peter’s foot in the Basilica, and putting in a request for a cure, my health has only gone from bad to worse.  Seriously Pete, where’s the love?!

With Lupus, Sjogren’s, vertigo and a Chiari malformation all sticking the boot in, these days the headaches are pretty much part and parcel of my everyday life.  I would, in fact, be more surprised if an entire week went by ‘headache free’.  Keeping on top of this amount of pain requires the stashing of tablets in every pocket, bag, room and drawer in the house.  I batch buy every week just to keep up with the demand.  I’m pretty sure my local supermarket thinks I’m stocking up for one big Armageddon style hurrah.

Making life that little bit easier still, the listed side effects of both Azathioprine and hydroxychloroquine are… wait for it… headaches.  Seriously people?  Is there no break to be had here?

With Lupus being a disease that affects the nervous system, sufferers are statistically twice as likely to get these migraine-like headaches.  Lupus headaches, they call them.  Yes, someone obviously put a lot of time and effort into thinking up that name, didn’t they.  Tension-types headaches are also more prevalent.  I totally get that.  Having Lupus definitely makes me grumpy and tense.

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) – a scoring system often used in Lupus research – describes a Lupus headache as a “severe, persistent headache; may be migrainous, but must be non-responsive to narcotic analgesia”.  Narcotic analgesics, by the way, are drugs that ‘relieve pain, can cause numbness and induce a state of unconsciousness’.  You’d think that unconsciousness would probably be enough to stop the pain, surely?

As ever, with such medical theories, opinions and statistics, there are ‘people’ who dispute the notion that people with Lupus could possibly suffer from a specific headache.  Dare I suggest these non-believers don’t have Lupus, don’t get the headaches and don’t have the first bloody clue.

Try living inside my head for the last 8 days and just maybe they’d have a fresh perspective and a totally different viewpoint.

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Oh, give me strength

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.

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Dr. Pitbull takes charge

Recently something I never thought possible happened: I stumbled upon the very best GP in the world.  Who knew such a doctor even existed?  I’d certainly given up all hope of hunting down such a rare and mystical beast.  Up until this point, I’d have probably given better odds to coming down one morning and finding a unicorn eating breakfast at my kitchen table.

It was a friendly, blood-taking nurse who originally pointed me in his direction.  I’d been having a moan about the less than impressive medical care (namely the great Azathioprine fiasco) I’d experienced recently, saying I felt completely let down.

I know just the doctor for you,” this nurse told me.  “You’ll like this one, I promise.  He really cares and he’ll definitely fight your corner; he’s like a pit bull.

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It all sounded too good to be true, I thought, but worth I punt, so I made an appointment to see him. A month later (yes, it can sometimes take that long to get an appointment) I rocked up to the surgery.

Well, blow me down with a feather if that nurse wasn’t right.

He didn’t try to rush me out of my seat or make me feel like an inconvenient hypochondriac.  He asked questions; he listened; he genuinely cared. And then, just when I thought he couldn’t have got any better, he said something that I’ve often thought but would have never dared say out loud, and certainly not to a doctor.

Lupus is a really terrible thing to have,” he agreed.  “If it were cancer, then everyone would know you were sick; they’d make allowances and care a little more.  But I image when it’s a disease like this that no one can see, it must be very frustrating to have it ignored or not taken seriously.”

Well, didn’t Dr. Pitbull hit that one square on the head.  It definitely goes down as the most empathetic thing a doctor has ever uttered in my presence.  And then it got better still.

You don’t have to settle for inadequate treatment, you know,” he continued. “You do have other options“.  This was news to me.  “Would you like me to refer you to the Lupus Unit at Guy’s Hospital in London? ” he asked.

Can you even do that? ” I said, “No other doctor has ever mentioned the place, let alone offered to send me there.

Yes, of course I can, ” Dr. Pitbull said.

This all happened a month or so ago, and, if I’m honest, I’d filed our conversation to the back of my mind, along with all the other pipe dreams that are unlikely to ever happen.  You know the ones:  full health recovery, Euro lottery win, shifting the muffin top – that sort of thing.
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And then, out of the blue, an appointment alert popped up on my phone.  Dear god, he’s only gone and done it.  On 10th November I’m getting my foot through the door of the largest Lupus unit in Europe – a place filled with doctors who treat nothing but Lupus every single day.

As if that wasn’t enough of a reason to worship at the feet of my new, wonder GP, in the months since I transferred over to him, he’s also proved to be everything the nurse prophesied and more.  As promised, he emails me the minute my bloods come in to tell me the results and check I’m OK.  He then replies within minutes of my reply, regardless of whether it’s his day off or rather too late at night.

Yesterday, (a Saturday, no less) he took doctor care to a whole new level.  When replying to his email, I said I’d felt terrible all week and couldn’t sleep.  Straight away he came back and asked if I’d like to see him next week.  That would be great, I replied, but I’ll never get an appointment with you.

Low and behold, a few minutes later, another appointment alert for this Thursday popped up on my phone: he’d only gone and sorted it out himself.

Give the man an early sainthood.  He’s single-handedly proved that some doctors are worth their weight in diamonds.  And that, with the right people in place, there’s still hope for our NHS yet!

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