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.

Let’s talk about Lupus (SLE)

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As the tag to my blog states, I am learning to manage life with Lupus SLE (Systemic Lupus Erythematosus).  Tonight, I read an online news report about Lupus, which compelled me to write a post and also reflect and take stock of my on health and well-being too.

First of all, let me explain what Lupus (SLE) is; SLE is an autoimmune disease, where the immune system attacks healthy cells, tissues and organs.  There is currently no cure for Lupus (SLE), however, I am prescribed medication that helps relieve the symptoms and reduces the risk of organ damage.  Oh, by the way it is not infectious/contagious, so you can stop holding your breath when your standing next to me and put the antibacterial gel back in your bag!  To put it in black and white, Lupus (SLE) is a pain in the a**e; it steals your friends, your social life, your energy and your sleep, to name a few things.  To top it all, Lupus (SLE) is what is known as an invisible disability, as quite often, I look healthy and you wouldn’t have a clue that underneath my smiley face, I am in pain, I am fatigued and sometimes my mood is a little low.

The last symptom I mention above, “feeling low in mood”, is the reason I write this post; “feeling low in mood”, is perhaps making light of the fact that depression can be symptom of Lupus (SLE), the psychological response of having a chronic and painful illness or an unrelated psychological illness (Lupus UK) or maybe even a combination of all of these.  I have attended a significant number of health appointments for Lupus (SLE) since my diagnosis in 2011, and I can count on one hand how many times I have been asked about my mental health, as the main discussion is always in regards to my physical health.  It feels that mental health is secondary, and is only discussed if I raise it and let’s face it, it’s still not an easy subject for many people to raise (that’s if we remember to, as we also get a bit of brain fog too!).  Despite the good work happening to remove the stigmas still attached mental health, it feels not enough is being done here, which, in my opinion is just not good enough.

When I was first diagnosed, I looked up every way that I could cure an incurable disease…yes, you read that right!  I tried eating vegan, drinking only green sludgy smoothies, followed an array of diets (GI, Weight Watchers, Slimming World, Healthy Eating Plate and so many others I can’t even remember the names of them!) and of course sticking my head in the sand and going into denial that there was anything wrong with me.  With this, I stopped taking my medication and ended up being really ill and then the reality hit, that I was in denial about having Lupus (SLE).  This was something that I was going to have to learn to live with, accept and manage for the rest of my life.  Hello?!  This was huge and how was I going to do this?  Luckily, I could access specialist counselling through work, which was an absolute godsend; this amazing lady, worked with me every week to enable me to process, accept Lupus and make it manageable in my life.  She helped me find my inner confidence and voice to use in hospital appointments to enable me to be the expert too, after all I am living this each day and even now, I still have to challenge some of my consultants to actually listen to what I have to say about my own physical and mental symptoms.

Tonight, I read the deeply saddening news report of Janice Ellis, a fellow Lupus warrior whose fight with Lupus became too much for her and she took her own life.  Like many Lupus warriors, she may have never showed the true extent of her pain, but she battled with chronic pain every day, the kind of pain that pain killers just can’t relieve.  I don’t know this lady or her family, but I know the feeling of putting on that brave facade of being “fine” when everything hurts, going for that walk, when I’d rather be resting on the sofa or getting up at 5am because Pumpkin has woken up when actually I really do need an extra couple of minutes in bed!  More often than not, I say yes, as I don’t want my son to see Mummy hurting or for him to miss out on things.  In reality, I am not very good at hiding it, as I start getting a bit grumpy when I am really tired or in pain, or the butterfly rash on my face gives it away first!  I am not in anyway, saying that family members or friends should know this, but just saying that as a Lupus Warrior, we have a lot of pride and its easier to say “we are fine” than “actually, I hurt”, as we don’t want our loved ones to worry.

I hope that by writing this post, it will reach out to other Lupus warriors to let them know its ok, not to be ok, but please take that huge step of talking to someone, either a family member, a friend or a social care/medical professional that can help you.  You don’t have to do this alone, there are helplines that are available if you don’t want to talk to someone face to face.

I am going to leave some links to some organisations (UK based) that can help:

The St. Thomas’ Lupus Trust can is a great resource, with an online nurse email/question facility (not 24 hours), Guys and St. Thomas’ were amazing in the first few years after I was diagnosed and throughout my pregnancy.  The website can be found here

Lupus UK – have a really helpful leaflet which a number of helplines on them.  You can download their leaflet here

Lupus UK also have a really great video that explains what Lupus is really well and is useful to share with family, friends and maybe employers when you need to, it can be found here

Actually, Lupus UK are just fab…please go and have a look here

Samaritans – you can find their contact details here

Thank you for taking the time to read this and learn a little bit more about Lupus.

This post is dedicated to Janice Ellis, her family and to all Lupus Warriors to whom the fight got too much. 💜🦋💜

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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.

I need a little time…for me.

I have toyed with the idea of writing about the adventures of becoming a mummy to our wonderful little pumpkin and living with Lupus; which likes to rear its ugly head when I least expect and want it to.

However, time has flown by for the past 11 and a half months and I have never quite found some time to sit down and write.  As there is always a nappy to change, better still a cuddle to be had, a lullaby to be sung or at its worse a blood test to be arranged. Oh, and now the The Great British Bake Off is on, so let’s throw another challenge into the mix and while we are at it, and I should just admit it, just by watching the GBBO I get serious cake cravings, so therefore, I’m playing my part increasing M&S’ cake sale profits, as I just don’t have time to bake at the moment – the Domestic Goddess is out of the office until further notice!

Despite all these hurdles, I wouldn’t change a single thing, I absolutely love my little family and everyday I am learning to live with Lupus and embrace it as part of my life too.
I have finally realised that I need a bit of ‘me’ time in this busy hectic thing called motherhood and did I mention we are also in the middle of relocating from Kent to Somerset, stressed? Me??!  Therefore, I am regaining some “me” time by writing a blog amongst all this chaos.

I am hoping that by writing about the day to day happenings in our family life, it will be therapeutic to me (taking away some of the stresses of packing/being surrounded by boxes), to perhaps become a journal to share with Pumpkin later on (I may have to be selective at times) and hopefully be a support to others in similar situations to myself.

So, pour a mug of coffee, grab a cake and join me on this blogging adventure. In reality, that should read…So, while you are enjoying a cold sip of coffee and left over Colin the caterpillar cake, enjoy this insight into my life.