Full time Lupie

If you have not yet delved into the far reaching depths and or earlier updates of this blog, you may not know that whilst having Lupus, I also work full time.  As many of us familiar with the disease know, it comes in all shapes and sizes (a bit like my waistline over the past 5 years) as well as severity.  To work full time for anyone is demanding, the relief of the approaching weekend and Saturday morning lie ins to recuperate, is notable if not from the sighs of my husband (the lovely and hardworking SuperMark) on a Friday morning, then the literary cheers, whoops of glee and photos with glasses of wine in hand on my Facebook feed on a Friday evening.  But for anyone working full time with a condition like mine, the reward of making it through a working week is far more of a celebration than the usual Friday night 'Beer 'o' clock' festivities.   To make it through to 5.30pm on a Friday when you suffer with chronic pain, fatigue, nausea, sore joints and a belly full of toxic medication is a rewarding and honourable achievement, because there was at one point in your life, when you thought you may never work again.

For me that was three years ago. Three years ago this week I lay in a critical care hospital ward, with seven stone worth of fluid crushing my lungs and causing my heart to fail, stage 4 renal failure and a 20% kidney function, barely able to breath or move and every wire imaginable strapped to me or in me.  At that point working is of course the least of your priorities and the last of your thoughts, but for those doubting that they will never lead a 'normal' life again, this is what I came back from.

Working full time for me is leaving at 8.15 in the morning and walking twenty five minutes to work, then eight and a half hours of running around assistant managing a large and very busy shop, serving customers, lugging stock boxes and climbing stools to merchandise displays, I then walk the twenty five minutes home arriving at a reasonable 6.15pm.  Door to door that is ten hours on my feet with an hours worth of breaks.  Most days something hurts, (arm, head, stomach, ribs) I feel sick, dizzy with tiredness or I have yet another cold.  But if anything it spurs me on even more, not because i'm a bloody martyr, or because I have a point to prove - ok, occasionally I have a point to prove, usually "don't pity me because I have Lupus" kind of point - but mostly because I take after my mother and I can be a stubborn arse.

Now, don't misjudge me, I'm not trying to be a superhero or win praise, i'm just trying to be the best I can without the the dregs of this disease dragging me down to the depths they often suggest I should wallow at.  I feel it is my duty to do my best and achieve as much as my body will allow, because it is an honour that I am able to. So many of my wonderful Lupie friends and people I know with chronic illness do not have the choices I have, they do not have the advantage of walking to work, sharing ideas with colleagues or gaining promotion or recognition, because their bodies simply won't allow it.  Working is not the most important thing in life, I above most know the value of that, it is just a means to an end, but above all it's a lesson to those with perfectly healthy bodies out there that choose or make endless excuses not to work.  Because if I can, then there there are so many more people that can work too.  Perhaps then, those genuine, wonderful people I know out there who really can't, who are at the endless mercy of their bodies, will face less criticism and stigma for their circumstance.

TOP TIPS FOR WORKING LUPIE'S

 Don't be an idiot - if your body tells you to stop, stop.

  Don't be shy - if it's one think i've learned it's asking for help when you need it. It's not a pride thing, if that extra 2hours on your shift is going to exhaust you, say so. Your employer has a duty of care.

Get messy - learn to let go of the things that don't always matter.  Not hoovering the stairs for another two days won't cause the universe to end. Good friends won't judge your bitty carpets, they'll offer to do it for you.

Self preservation - sometimes it is nice to do favours, swap shifts, do overtime but how does it really impact on you?  Will that extra day make you too tired to enjoy your day off, limit the energy you have for your family? Never say never, but don't be afraid to say 'No' once in a while.

 Mindfulness - take time to think about everything you do and perhaps how doing it differently will benefit you, it might be as simple as making sure you go to bed early, taking the bus to work a couple of days to feel less tired and save your legs, sitting down on your tea break at work instead of nipping out to buy washing up liquid or put that cheque in the bank. Can you do that on your way home? or ask a fit and healthy colleague if they are going in the same direction.

 Food - eat well, simple as that. If i've eaten shit for a few days, I feel like shit for a few days. Think energy, goodness, vitamins. I don't eat as much veg as I could but I eat well, porridge and fruit for breakfast, bananas, baked potatoes, brown pasta, chicken and veg, casseroles.  Don't starve but don't live on pizza and chips. I least of all like salad all the time.  You need fuel!

 Sensibility - and by that I mean shoes, on my feet all day I vary between M&S foot gloves (the less ugly or granny-fied ones) or my comfy converse rip offs ( I'm not a rebel, I just have the advantage of being able to wear jeans for work)

Exercise - Don't be silly and go throwing yourself around a community sports hall at a Zumba class but a breath of fresh air if you've not been up to much for a few days does the world of good. Just a walk to the corner shop. If you feel up to it.

* I do not endorse missing prescribed medication for fresh air, just perhaps the headache ones.. on occasion.

 Modification - I now sit on the bed opposite the mirror to dry and straighten my hair.  If i'm tired, standing wielding a hairdryer and brush for twenty minutes is exhausting.  Apply to hoovering living room, hanging washing on the clothes maiden, ironing ( if i have to iron).

 Craftiness - learn to knit, crochet, paint, sew or get a cat - all proven to dramatically decrease blood pressure and stress levels. I knit and have a cat, a disastrous combination on occasion.