living with Sjögren’s Syndrome |

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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Bus stop sign 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.

You can read more here about the symptom of Sjögren’s Syndrome, who gets it, how it’s diagnosed and how it can be treated.