A Toddler Friendly Christmas

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I can’t quite believe that Christmas is just under a week away, the tree is up, but the stockings are not hung up yet; as I don’t think they could withstand the rigourous testing of pumpkin on a relentless daily basis.

I love Christmas, I love decorating the tree, I have a wonderful box of gorgeous glass, porcelain and other precious handmade decorations that adorn our Christmas tree every year…well they did up until this year; the year of the toddler! This year its all about Pumpkin…well kind of! I have a confession to make, I went and bought some toddler friendly, shatterproof baubles to go on our tree; we decorated it and ended up removing at least the bottom 2 feet of the tree’s worth of decorations, as my mini tree terror had a wonderful time of pulling them off, throwing them across the room, and screaming at the top of his delighted lungs “BAAAAALLLLLLSSSS”. The Christmas tree decorating perfectionist in me died a little that day, I kid you not, that night, after pumpkin had gone to bed, I sat on the sofa, I looked at the tree and declared that I hated the tree and it was horrible (Yes, I had turned into the Mummy Sized Toddler). Please do take into consideration, that I was also suffering with the most terrible PMT on earth and you could have decorated that awful tree with bags of Peanut Butter M&Ms and it would still have been met the same answer.

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So, the next day, my long suffering fiancé took pumpkin and myself to our local (ish) garden centre, to get some more decorations to make it more how I wanted it. Yes, you read right – two important things here: how I wanted it and garden centre. So lets break it down, All thoughts of toddler friendly and it being all about Pumpkin, kind of went out of the window for a few minutes and also so did the budget I had set myself….the dream tree would have set me back £££ if I didnt give myself a good reality kick up the backside. Did you see what happened there….yes I got carried away into a little excited Christmas decoration delirium that for a brief second I forgot about the grubby sticky toddler fingers, that would wreck it in 5 minutes flat.

I ooo’ed and ahhh’ed at the gorgeous trees and I did keep my Mummy hat on and kept to the children themed tree (which incidentally was in my favourite Christmas colour theme) and went a little bauble crazy. Luckily, for my bank card, my previous colour theme was the same and so I knew I had some baubles that were shatterproof at home that would go with them, so I didn’t need to buy too many!

So, that evening when Pumpkin, the Christmas Tree Destroyer went to bed, I removed the silver baubles of gloom, and the inner perfectionist came out to play. Oh, the inner perfectionist had fun, the tree looked all Christmassy and admittedly it does look like the Red and White Christmas Decoration Monster has thrown up all over the tree, but hey it now looks the part and the Mummy Sized Toddler is happy!

When Pumpkin toddled in to the room the following morning, the shout of “ooooooh mummum ooooh” was so worth it” and then the fatal war cry of “BAAAAAAAAAALLLLLLLSSSS” echoed through our home shortly afterwards. I spent the next few days telling him no, removing the balls from his chubby little vice like grip and putting them back on the tree, or putting all the stolen balls into a bowl and then putting them back on the tree at the end of the day. I have also and also tried ignoring him and watched as the Christmas Tree was dragged across the floor (thanks for that nugget of advice Dear Google our friendship is on the rocks). Now, I have relaxed/admitted defeat: it’s Christmas, why get stressed out about it, its the first Christmas that Pumpkin is aware that something big is happening, but yet he doesnt really know what. He is into everything, he wants to be part of everything and if that is decorating the tree with Megabloks and Little People so be it and do you know what….his way is better than mine (well, maybe!)

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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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