#FIVE. LUPUS. CHRONIC ILLNESS. INVISIBLE ILLNESS.
Let’s talk about Lupus. Lots of people have heard of Lupus but I find the majority of people don’t know a lot about it. There are few different sub-categories of the illness but I have SLE which stands for Systemic Lupus Erythematosus; an autoimmune condition which means the body’s immune system attacks itself, causing inflammation systemically through-out the whole body; all or any organs joints and tissues can be affected.
I was diagnosed in 2010 after several years of on and off symptoms that in isolation could have been nothing more than post viral; but it all came to a head when I went to bed one night with back pain and woke up unable to feel anything from the waist down. My Lupus had presented itself in a very rare neurological form called Transverse Myelitis which simply means swelling of the spinal cord. Cutting a long story short, because frankly it’s pretty boring, I spent the next ten years in and out of hospital. I learned to walk again in spite of the doctors warning me it was unlikely; I was tube fed directly into my small intestine for 7 years because my gut had got in on the paralysis party that my body was having, I’ve survived sepsis numerous times, managed to have two ‘miracle babies’ in the words of my consultant and I think I am finally in the best health I have been in since before the diagnosis.
It has taken a LOT of moments of trying and failing to figure out my limits, to work out the pace I need to take life in order not to be affected more harshly by the lupus every day. The daily symptoms mean I get joint pain, I tire easily and my immune system is vulnerable which means frequent infections. But by using the support network I have around me; I am coping as a single mum of two young children and I would say most definitely winning the battle I’ve been fighting for the last eleven years against my own body. I’m SO fortunate to have such supportive parents who live just five minutes away and they are always on hand in an emergency, or just to help out when I start to drown a bit. I employ a PA who comes in and helps me round the house with housework, looking after the kids and just general physical help. It’s just like having a friend around, helping out, as many couples have the opportunity to do for one another.
I find it quite difficult to talk about the support I receive, the amount of medication I take, the scars on my stomach from all the surgeries, the fact I own a blue badge and just the illness in general. On my personal social media accounts, I never mention my ill health although I know most people in my life are well aware of it all. I look very normal to a stranger’s eye, which can be a blessing and a curse. It is good in that I feel aesthetically ‘normal’ and attractive. I don’t ‘look’ disabled; in fact, I look quite well. The downside is that because I often look well people don’t always understand that I’m feeling really terrible at times. If my support were on holiday for a week and it was me myself and I with both kids on our own I would be burnt out. I’m not talking about get an early night and I’ll feel better in the morning, I’m talking about feeling really unwell for days and days. In fact, I never wake up without pain in my back and hips, I never feel I’ve had a good sleep and I’m always on my back foot. With the help of family, friends and my PA I definitely have my head above water now and I’m probably at the pinnacle of the best health I can be in under the circumstances. I’m also so lucky to have such a supportive and understanding GP who listens and cares.
Lupus is a b*tch but this b*tch is stronger. I take 18 tablets a day, including steroids, which I hated for a long time because they make me have chubby little hamster cheeks, but I’ve learnt to love my face; it is what it is so I might as well enjoy it! Same with my surgery and feeding tube scars; I literally wouldn’t be alive without them and neither would the children, so gone are the days where I sit and hate my body, HELLO to the days I look at it with love and respect for what it has endured. And it still looks pretty banging considering I’ve grown two humans in it. There is so much criticism against social media and filtering pictures and pressure on young women these days, but we do also see a lot of the contrary; women showing REAL bodies and REAL shape. Love your body and look after it best you can; you only get one!
I think if the people who know me truly knew the depths of the physical and mental challenges I’ve faced with this illness they would be shocked. I definitely wear it well; I hide it well and I don’t appear as ‘ill’ or ‘disabled’ as I am. But I see this as a good thing. I do normal things that any other 31-year-old mother could expect to do, I date, I have lots of friends; I just have to manage my energy and find that balance which I have finally found!
I want to be able to give help advice to other’s who have gone through anything similar to me; chronic illness with motherhood or any associated challenges, but it’s not as simple as writing a checklist. I hope that you can stay with me on this journey and overtime you will pick up the tips and tricks I have acquired in my ‘how to boss being a single mum’ portfolio.
For now, I shall leave you with this; don’t lose yourself in a spiral of self-pity and sorrow. Life can be really f*cking hard and we can be dealt some really sh*tty cards but there are things we can change and things we can’t. Don’t waste your energy on the things that you have no control over; put your energy into yourself, loving yourself, being unapologetically you, and like I preach in all my posts; FOCUS ON THE POSITIVE AND YOU WILL FUEL THAT POSITIVE FIRE.