Tuesday 31 October 2017
Mum-Guilt. That little bastard of a voice in your head that tells you you're crap, you're not doing it right, not doing it well enough, not doing enough full stop, it goes on and on and when you add a chronic illness to this being a mum mix then you're fucked and that's the position I'm currently in – parenting (or trying my best to parent) with a chronic illness.
I'm sure you all know I have Lupus which in short is a chronic illness (for which there is no cure) that causes moderate to severe joint and muscle pain, skin rashes, hair loss, extreme fatigue and can cause inflammation in any organ in the body which in extreme cases can cause death. 20 years ago people with Lupus were told they had a maximum of 5 years to live. Thankfully now most people with Lupus will live a normal life expectancy but do require regular check ups and will usually require medication for the rest of their life. In my case I suffer with joint pain and fatigue but there is so much more to it than just a bit of joint pain. Below I've tried my best to explain what it really means to live with an incurable illness....
Everyone knows being a Mum is hard and tiring but throw in a Lupus flare up and it becomes almost impossible. I couldn't even change Millie's nappy this morning due to lupus related swelling in my hands. That little voice in my head was saying 'What kind of mother are you?'
Gosh, that sounds so harsh when you say it out loud. Wow, my inner voice is rude! But this is the reality of how it feels. Luckily Millie has amazing grandparents who have all taken turns to look after her so I console myself with the fact that Millie is happy going to Nana's/Grandma's house and its good for her to be away from me sometimes but again its that Mum Guilt comes out and tells you that you should be able to look after your own child and not have to palm her off. I know i'm not palming her off but that's what my rude inner voice tells me.
On top of the mum guilt I'm currently (not) coping with agonising pain in my joints (knees, elbows and hands) and severe fatigue which is debilitating.
The pain is so bad that one time I got stuck in the bath and couldn't get out which lead to a full on mental break down and I genuinely thought my neighbours were going to call the RSPCA. I was wailing like a wounded cow. And then the fatigue, jaysus christ it is so horrific, I honestly can't describe how awful it is. It is not like normal tiredness. It doesn't even compare. It's like every single tiny piece of energy has been sucked out of you and leaves you feeling completely deflated. If my body could talk it would be saying 'no, just no.'
Earlier today I needed a wee and the effort it required to physically get up off the sofa and walk to the loo was immense. I held my wee in for ages because I couldn't bear the thought of getting up, like literally, the mere thought of getting up was almost too much. Queue over dramatic hand to forehead gesture.
Right so far we've covered mum-guilt, severe pain and extreme fatigue and then of course there is the work-related guilt as I've had to call in sick for the next two weeks which makes me feel like shit
a) because I like my job and I enjoy working
b) because me being off causes staffing issues and makes me feel horrible.
So as well as pain and fatigue Lupus also brings with it a whole world of emotional turmoil.
I don't even want to get started on wife-guilt. Omg. The guilt I feel when Sami's been at work all day and all I've done is lie down making instagram videos and occasionally getting up for a long overdue pee. And when he has to do the housework as well as his full time job. OMG and when he has to cook his own dinner it breaks my heart! Which might sound so silly but I love playing the dutiful wife (feminists I hear you hiss!) I love nothing more than a spotless home and cooking dinner and generally looking after my family so when I can't do it I get really upset. And sami doesn't clean the place like I do so then I get annoyed because I'm completely mental and have major ocd.
A few years ago I was so ill I was pretty much bed-bound for months and I told Sami I'd forgive him if he left me for a normal person that wasn't ill and I seriously meant it. He chose not to and then we got married so I guess he meant it but wow that was tough. I honestly didn't want him to have to put up with this. Thankfully we got through what was the worst flare up of my life and I was well again for quite a while but you do feel guilty because you're husband and your family got through it too, its not just you.
And lets not forget the brain fog. For some reason when people with Lupus experience a flare up they often suffer with some of kind cognitive malfunction. in my case I become very forgetful and do weird things like put my phone in the fridge or once I put the oven on to bake a jacket potato and completely forgot to put the potato in so you can imagine my disappointment and hanger when an hour later I went to get it out and it was on the side. That poor potato was the subject of some serious domestic abuse.
I'm quite a ditzy person anyway but in the midst of a Lupus flare I am dangerous and should not be allowed out. I usually do lots of silly things a few days before a flare hits me, so I usually know when a flare up is coming and funnily enough the last 2 weeks I have done lots of silly things and Sami has found all sorts of non fridge items in the fridge, or the milk in the cupboard etc. Sometimes I've actually been a bit concerned but its a relatively normal symptom. I had an MRI a few years ago to check that it was just Lupus and nothing more sinister and my professor said 'lets do an MRI to check you have a brain.' Gee, Thanks Prof.
So there you have it, having a lupus flare up isn't just a little bit of joint pain and some tiredness, there's waaaaay more to it and it isn't just me who is affected, its Sami, my family, my work and now Millie too.
I must add that although I've complained and moaned the whole way through this post, I do know how lucky I am and I have so many reasons to be happy and I usually am but right now this flare up has really taken hold of me and I needed to get this off my chest and actually, by doing so it has made me reflect on all the positive aspects of my life of which there are so many. I mean how lucky am I to have a wonderful daughter? A daughter doctors said I would never have! And a loving husband that sticks by me even when I'm moping around crying about my arthritic joints and shouting at innocent potatoes? I mean, that's pretty amazing really isn't it? So, yeah I may have a horrible illness that will never go away but neither will my husband so I guess its all good.
Now, where the feck did I leave my phone? Seriously.