I don’t pretend to know a lot about Lupus so I’m not going to try and educate anyone, all I know is how my Lupus (SLE) effects me. It would be very easy for this blog to be a massive whinge about my ailments, life and some form of sob story about how tough it all is. But my life is no tougher than anyone else’s, no-one ‘has it easy’ some may seem to be having more of a breeze through than others, but everyone has bridges to overcome at some point or other. Yes, there may be those better of than you or I, but there is always people worse off. Some peoples battles may seem more unfair than others, but to every single person the emotions and struggles are real. We all need support (whether we are too stubborn to admit or not- I know I am), we all have down days and all have days when we want to tell everyone to bugger off. Life for me is about balance; when to pick myself up from a downer and say to myself ‘Come the fuck on Bridget’ (from the brilliant Bridget Jones Diary film) and when to surrender and face the scariest part of life- admitting to not being ok, but realising that ‘it’s ok not to be ok’. This blog is simply my real life feelings from having Lupus and being a mum. The emotions I have found that come with the two and what I try to do on the days my body basically sticks two fingers up at me.
Both Motherhood (I’m sure parenthood in general) and Chronic illness can be seriously lonely, isolating and above all scary! There is so much fear that comes from the both, ‘can I do this?’, ‘am I strong enough?’, ‘what the hell do I do now?’. The answer is Yes you can do this, you are strong enough and change isn’t always a bad thing. Whether it be finding out you will become a parent or getting a diagnosis to a chronic illness or the two combined, life or at least your outlook completely changes within a few moments. My mind went into overdrive after finding out about the both individually, working through practicalities, the things I may miss and then mourning the life I imagined and had been working towards. With my diagnosis I started on the pity party, feeling sorry for myself, clueless about what I was doing anymore. It was stressful knowing I was doing a degree which would never work with my Lupus. However, here I am 4 years later (hindsight is a wonderful thing), had I have not got ill resulting in my diagnoses of SLE, I would never have had my daughter or be with my first and only love. From time to time I still wonder what I would have done differently had I not have gotten ill and then fallen pregnant but I wouldn’t change it for the world. Both were unexpected and not part of ‘my plan’ at the time but the combination made me realise the things that were most important to me; family being at the forefront. Yes, I wanted a career, I wanted to do the ‘travelling’ thing. I still do want these, but I will just do them in a more manageable way that actually suits me more; with a cuppa tea and pyjamas, not a bottle of vodka, shorts and T-shirt 2 sizes too small (I’m such an old person, I know). I can work towards them, use them as motivation (as well as my little one of course) and appreciate them a lot more than I would have previously. So yes my life changed but oh my, was is for the better!
Just one or the other fills life with their own ups and downs, mixed together there is a continuous need to balance health, happiness and avoiding guilt (if that is ever possible). Guilt only a parent would know. The guilt of not doing those things you ‘should’ be doing. Who actually said they are the things that ‘should’ be done- ok feeding your child and maintaining some level of cleanliness (no one likes the smelly kid) are pretty necessary- but really keeping your kid fed and alive is tricky enough for any parent at times. Clearly the guilt stems from hopes, ideals and preconceived views of parenthood that we created for ourselves (or at least I did). Despite only letting down my ideals in reality, the guilt is so real and so heart breaking, feeling like a failure for not doing all the things I wanted with my littlen. I’m sure I’m not the only one who feels the guilt, but when you’re child is shouting (everything is done by shouting, if she is quiet then we have a problem) ‘mummy come play’, ‘lets dance mummy’, those days when I have to sit there and say no, purely because I know if I do I will be lucky to be able to cook her tea later, it really is heart breaking. She is only 2 she won’t understand, you look ok, to her, mummy is the person who does everything! Nobody can do everything, life is about compromise, especially if you have your health to consider too.
I think every mum, dad, grandparent whoever you are, we all push ourselves until we are ‘broken’, as the love for the child is so overpowering. The only situation I have come across that parenting is any different with a chronic illness, unlike healthy parents, those with Lupus shouldn’t keep pushing as this can make everything a lot worse. Now I’m not saying parents in general don’t need to relax with the pressure they and society place on work and home life, they really do. However, the consequences in general are not so ominous as those with Lupus (and I imagine for anyone with a chronic Illness). I am the worst for it, I will keep going until I really truly can’t, which last year resulted in a year of illness, strong medication and a pretty useless feeling Mumma. I am still trying to work out how to take life in moderation, as and when you can, taking each day as it comes. It’s so much easier said than done.
This year I am so determined to get back to ‘my normal’. I am doing all I can to get healthy enough to have a little brother or sister for Amelia. My small one has reached that more independent, stubborn, cheeky 2 year old stage and I seriously miss the baby bit, the smell, the early development and all that comes with a new born (bar the sleepless nights!). I am setting myself small tasks each day, whether it be doing a load of washing, doing a food shop or getting out the house for some fresh air. My to-do lists are getting smaller, chores spaced out through the week instead of one super-mum day followed by two days of barely-even-mum. I have placed more pressure on myself to ‘get better’ than the unrealistic expectation of pristine house, 5* restaurant style dinners, perfect hair and make-up and all that unnecessary pressure pushed on todays women. I also plan to stop when I need to stop. My achievements may sound small to some but they are triumphs all the same. Any mum that has managed to get showered, wearing something relatively clean and stepped foot out the house with kids dressed, fed and still breathing at least once in a week should feel very proud anything more than that is a bonus. None of us are alone in our journeys even if it does feel that way at times. Most importantly for me is I do not let Lupus define me, I am Me, Amelias mummy, I just happen to have SLE. My best piece of advice is to find beauty in the little things, find your happiness and a feeling of content, we are after all, only human.
The achievements may be smaller but they are triumphs all the same!