Ever since my Lupus diagnosis I’ve been in denial about just how much it has shaped my life. I realised I’ve been “clinging to the wreckage” of what I thought my “old life” was like. Scared to let go and embrace the fresh challenges that life now brings me. It’s hard to explain to someone who hasn’t experienced long term illness just how it affects daily life. People ask “How are you?” and of course I answer “Oh, I’m fine, mustn’t grumble.. you know…”. What I really want to say is that today was a “good day”. I managed to get myself vertical by 9am, dress, eat breakfast and meet a friend for coffee. I spent the afternoon “in recovery” on the sofa, my legs refusing to hold me upright because the effort of simply washing my hair, getting dressed and out of the house was as much as my body could take for one day. These things you take for granted, that you do without thinking are herculean tasks for me on a “bad” day -and here’s the cruellest thing – I never know when a bad day is coming. I might have a lovely week, plenty of sleep and little stress. Then a sarky email or snide remark will send my stress levels soaring. I’ll lie awake worrying about a friend going through a rough patch and Bam! I can’t even get out of bed and dress myself.
I tell you this is in the spirit of “full disclosure”. So that when you tell me how well I look or how “lucky” I am that my husband “lets” me stay at home all day instead of having a “real” job or jokingly call me a “slacker” because I answered the door in my PJs at 3 in the afternoon you may understand why you get the rough edge of my tongue or the benefit of my great repetoire in sarcastic one liners. I’d love to have a “proper” job, but try explaining to an employer that you can’t work mornings or that double vision brought on by fatigue stops you getting behind the wheel on a regular basis. Self employment really is my only option. Ask me about the freelance life and I’ll wax lyrical about the freedom to choose my own hours, work from home. But the truth is I envy you your mundane 9 – 5.
We spent Easter week in Cockermouth at my Mother in Law’s. “Lovely daughter” came over for a few days and in between over consumption of chocolate eggs we managed a cosy Mother – Daughter lunch in town, a mooch around the shops and best of all, a family outing to Crummock.
This place holds special significance for me. It’s one of the first places Mr T took me to when we first met. We used to give our dog a regular bath in the lake and it’s where Mr T tried unsuccessfully to teach his little girl (and his wife) how to skim stones. My M-i-L is dismissive about it’s charms. The walk is too flat, there are too many tourists and you have to pay for parking. All this is true; and yes, you have to dodge toddlers in wellies too big and dog walkers who haven’t quite mastered the extending lead. But you’ll be rewarded with some of the finest views to be had at ground level.
I love this place, no steep gradients mean I can walk further and for longer without pleading tiredness. There are benches where you simply “must” stop and admire the view. It’s a chance to breathe fresh air, to reflect and just occasionally have a moment of clarity. All of a sudden I realised, that by denying the daily struggles and by pretending all is well and life is lovely I was kidding myself more than anyone. The fact is life can be shit. Not just for me, but for all of us. Mr T has many crappy days at the office, my neighbour has MS and endures far more than I do. Another friend is a carer, another recently bereaved. There are days when we all have crappy lives.
So, here on a shingle beach, with the sun trying hard to shine through grey skies I reached an epiphany of sorts. I’m going to stop pretending life is great when it isn’t. But equally, I’m going to do my best to find the sunshine on every rainy day. So yes, it took me until lunch time to get of bed the day we went to Crummock and I didn’t have a shower or wash my hair first. But I got to see lambs in the field, hold Mr T’s hand as we walked and do the things normal people do.
No more excuses. No more pretty Instagram pics posted from bed giving truth to the lie that all is well when it’s not. Instead, lots of laughter at my own expense. An admission that mooching around in PJs for most of the day is acceptable every once in a while – anyway – that’s practically uniform for most freelancers isn’t it? A late lunch with friends instead of morning coffee is OK and admitting that an evening in the pub means a morning in bed (and not because of a hang over) is not an admission of failure. It’s time to let go of what might have been and accept what will be.
Feel free to remind me of this optimism and positive attitude next time I bend your ear about how unfair life is. Then pour me strong coffee, cut me a large slice of cake and join me on the sofa. I didn’t choose to live life in the slow lane, but you know what? It’s a pretty darned good place to be.