Flippin’ ‘eck! I tell you, life can be just so exhausting – even when you have it all on a plate. I’ve been privileged enough to be brought up in a loving family home, to sleep in a bed of my own in comfort knowing that I was safe and sound; to have food on my plate three times a day for most of my life – not always, and for those years of enforced austerity I am forever grateful even if it made me hungry every day of the week for a couple of years. During those years, I didn’t have enough money for electricity or gas or to get to and from my uni, so I walked or cycled everywhere – so yes, at least I had access to a bike for some of the time. Once I got to uni I could get to shower in the sports hall and I would be warm and dry while I was learning. And I was privileged to be able to apply to uni and be semi-supported while I was there. I didn’t have to fear for bombs unlike my Northern Irish peers who thought they were in paradise to be away from their terror-strewn daily lives back across the water. And once I got my degree into my sticky little hand, I knew I had a profession to walk into, that would pay me well enough to always be, now how did my mum put it? Ahh, yes, that’s right, “you must always be financially independent – don’t ever be dependent upon anyone other than yourself. You have to be able to stand on your own two feet and be able to look after any children you may have.”  I was 10 years old when she told me that – my dad’s last surviving colleague from his war time squadron had just died in a test flight leaving his young wife and four children effectively homeless as they could no longer stay on RAF property. I took it on board and eschewed journalism and languages for sciences – but being a country lass, I only ever had eyes for animals anyway! A vet it was then? Ehhh, not quite! But that’s another story. I’ve lived in many different countries and working in healthcare, it has been plain to see the massive disparity between the ‘haves’ and ‘have nots’ and the greater disparity in the proportion of the ‘haves’ and ‘have nots’. Regardless of bank balances, holidays not had or anything else, I know beyond all doubt that I am a ‘have’. I have had and still do have it all … but that doesn’t mean that it can’t get exhausting, that life’s quirks can’t take their toll, or that it is a guarantee for emotional and psychological stability.

So yes, this is why ‘Rollercoaster!’ I seem to be one of those folk who on the surface appears to be laid back and never phased by anything but underneath the silky surface of practised oil, there is often some serious turbulence going on! One minute I’m up high with Superwoman flying with my cape outstretched and winning fist saluting ahead of me (did she ever fly or did she just Boing! everywhere like a lushily-dressed kangaroo?) Anyway, there I am, high as kite one minute before like the rubbish surfer I am, I’m dashed and smushed against the stony shore of reality – nothing like mixing metaphors, but you get the picture!

Some of this emotional turmoil may just be who I am; some may be the everyday stressers that many of us live with and some of us don’t live with so well – so just part and parcel of life, hey? But some also may be living with Lupus as everyday your body decides to behave differently from the day before or even the hour before and you are never quite sure what it’s going to pull out of the bag or when. The longer you live with it the greater the side effects whether from the meds that are needed to keep functioning or from the associated health conditions. It’s certainly be interesting if not a tad frustrating! Not least is not being sure exactly what I’ve got.

For years I was labelled as Primary Sjörgren’s Syndrome and I suspect that I still am, but it’s a bit of a fuzzy line between Sjörgren’s and Lupus (that’s Systemic Lupus Erythematosus). For me, a lot of the day-to-day manifestations are linked with rheumatoid arthritis. So some days, I hobble like a 90 year old, unable to get up and down from a chair or walk across a room; zippers and buttons and round handles are impossible and, well let’s not bore you with the endless list but it certainly has given me a greater appreciation for why oldies end up housebound and take 10 minutes to cross a road. It is exhausting and that’s the other factor that is infuriating – the fatigue.

I’ve always been an active sort of person – physically and mentally – so to to be floored in both departments is a bit of a bummer. To be sitting talking to someone with a head full of buzzing cottonwool (why can’t it be quiet, damn it?!) and then to be so seized up that I can hardly get out of the chair only to hear as I’m leaving some not so whispered comment about acting as if I was in pain, “We’re all in pain dear. We all have sore joints – just wait ’til you get to my age!” I think that is the most frustrating aspect of autoimmune conditions. On the whole, we can look as if absolutely nothing is going on with us and so everyone else around us thinks that we are being drama queens, making it up, “Oh DO stop swooning like the ruddy Lady of the Camillias!”; “Oh DO hurry up. Stop making out as if you can’t walk anywhere!” “What d’you mean, ‘you’re tired?’ Stop being so lazy and just get on with it!” Eventually, I suppose, it is not that surprising after many years of things not being quite as they should be to being just plain diabolical when I couldn’t sleep for the pain, couldn’t toilet or dress myself, couldn’t clench or open my hands, couldn’t smooth my then young boys’ hair without it hurting and so on, that anxiety and depression start to eat away at one’s equilibrium.

Rollercoasters have always been a bit scary in my book – addictive yet heart stopping at the same time. But if you can’t laugh and scream at the top of your voice with the sheer joy of life then what are you going to do when you plummet to the dregs? It’s the pleasure  of living that is the addiction that keeps dragging us back up to the top to be exhilarated once again.

Yayyyyyyyyyyy!!!!! Let’s go!!!!!!! 😀