Brain Fog

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I have been a bit quiet on my blog for the past week, and that is because Flare is in town again. If you don’t know who “Flare” is, please take a moment to read one of my earlier posts, where you will get to learn about my frequent unwelcome visitor.

This time Flare has brought with her a particularly horrible sidekick and that is what is known as Brain Fog or what I call “Bee-isms” to try and make light of it. Brain Fog is where my thought process can sometime get a bit jumbled and the wrong words come out of my mouth, despite my brain knowing the word I actually want to say. Sometimes, this can be a bit amusing, other times it can be downright frustrating and I feel a little bit silly.

However, to my family this is often a sign for them that I am pushing myself too much and I am needing to slow down. I am grateful, that they recognise this, as I am stubborn and will keep pushing on each day until I will make myself poorly and now they will step in before this happens. Even as I write this, I know that sounds an incredibly selfish thing to do, but to be brutally honest with myself, it is down to pride; I want to be the best mummy I can be and I want to be able to lead a completely normal life.

This is where I need to give myself a reality check and pull myself up from feeling too sorry for myself during “Flare’s” visits; I do lead a normal life, a normal life for me. I accept that pain, fatigue, medication and numerous hospital appointments will be part of my life, for the rest of my life and this is where I need to be organised. If I recognise that things are worsening, I deal with it, by consulting with the team of medical practitioners working with me. If my Lupus is in a period of remission, then I focus on what is working well at that time and try to remember what lead me to that point for future reference. Equally, I need to try my hardest not to fight on during “Flare’s” visits, swallow my pride and most importantly try to recognise the early signs and speak more openly about them to my family.

I know that all sounds idealistic and easy, but believe me it’s not and my fiancé often needs to remind me of the above and bring me back to reality gently. Especially when I am feeling sorry for myself or feeling that I am crap Mummy, yes, that thought frequently goes through my head when “Flare” comes to visit.

In my eyes I have the most wonderful family, a family who I love, adore and I am fiercely protective of. Over the next few months, I am making some big decisions, which I am doing in my own and my family’s best interests. I will write about them when the moment feels right, at the moment, I am not quite ready to share them yet. In the meantime, I will focus on being healthy and spending some quality time with my family.

An Unwelcome Visitor

This weekend an unwelcome visitor arrived, unannounced…and by the look of things she is here to stay for a few days. Unfortunately, this visitor does not take the subtle and unsubtle hints that it’s time to leave, as my family have made other plans. I’m sorry, but this time my unwelcome visitor, you are just not welcome.

Let me take a moment to introduce you to this unwelcome visitor…meet ‘Flare’, Flare likes to make an appearance every now and then, to remind me that I have Lupus SLE. Lupus SLE (Systemic Lupus Erythematosus), basically for me, means that my immune system doesn’t work properly and tends to behave rather hyperactively. When Flare visits, she brings with her a bag laden with the following things: fatigue, Joint pain, a facial rash and mouth ulcers. Can you begin to see why Flare is not a welcome guest?

Since Pumpkin has been born, there is an additional item in Flare’s bag, ‘Mummy Guilt’; this makes the physical pain bearable in comparison to the emotional pain of rearranging plans to make the day more manageable, yet fun for Pumpkin. In this case it was having to cancel pre-made plans to go out for the day, but instead it was now a day at home, with maybe a gentle walk at the end of the day. Of course, Pumpkin is only 11 months old, and he does not understand our daily plans, except roughly when food/milk is due and when he is tired and boy does he let us know!

I have found it hard this weekend to keep the happy Mummy face on, trying my hardest not to let it slip to show that Mummy is in pain; and most importantly to me, not letting Pumpkin know. Even when he happily jumps about on my legs as the sleeping bunnies wake and hop all over the front room… keeping things hop hop hop not ouch ouch ouch! Mr Tumble has a lot to answer for, but a lot to be thankful for this weekend!

For a brief moment, I worried about what Flare would bring in her bag for future visits as Pumpkin gets older. For a fleeting moment, I was a little worried and then I got excited and my imagination ran away from me. The quiet days in will be what and wherever our imaginations take us; from dens in the front room rain forest, to a pirate ship made out of Mummy and Daddy’s Bed. There are so many adventures our little family can have on quiet day’s at home, so perhaps Flare may become a welcome guest, you never know.

For more information on Lupus, please take the time to visit www.lupus.org.uk based at Guys and St Thomas Hospital, who have been absolutely amazing since my diagnosis in 2011.