Tag Archives: lulu

While we devotin’ Full time to floatin’ Under the sea

When Lulu’s dad first left she was still at nursery so he would often take her out for a day to spend time with her (without the fear of a fine) and on those days he would often take her swimming. She was a real water baby, and still is, hence her love of all things mermaid I think. Ariel is her favourite princess of them all, this may also be to do with   the fact that she also has red hair just like Lulu. Anyway, as she got older it was time for her to have formal lessons. Especially as we holiday by the sea in Suffolk each summer, for both safety reasons and to be able to have a full appreciation of the gorgeous sea that surrounds us. So she started lessons at a local pool last year. As a side issue, as you know I am always hot and sweaty but oh my goodness, how hot are childrens pools? Sitting and watching in shorts and a t shirt in the height of winter still doesn’t keep me cool. I am also most cross that I haven’t lost at least a stone from all the sweating.

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Lulu, like most children her age, is a little obsessed with YouTube, and it was while browsing that she came across the mermaid tail swim suit. It is literally a tail, that fits from the tummy down and covers your feet like a sleeve, and you can swim around in the pool with it. It looks fantastic but Lu isn’t a strong enough swimmer yet to merit one. Instead, at Christmas I gave her a gorgeous mermaid tail blanket which I adore but didn’t quite cut the mustard for her. I often find using her pyjama legs as as tail, by shoving both her legs in to one pj leg, like a very tight tube skirt – remember those? I have therfore had my eye out for a mermaid type tail she can actually try out and use in the sea and so when the lovely Leanne at Simply Swim did a shout out for those with children having swimming lessons to try out some of their range I shoved my arm straight in air and starting shouting ‘pick me, pick me, pick me’. And you know what? She did!!!

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She asked to go me to the website and choose some things with Lulu and there it was the holy grail of swimming, THE most perfect pink mermaid tail by Finis, practical and oh so pretty. Into the basket it went immediately, it also comes in blue. To be perfectly honest beyond the obvious joy of the tail, Leanne appeared at a very fortuitous time as all of Lulu’s swimming class friends have googles but she doesn’t, so into the basket went  a beautiful pink pair by Aqua Sphere (currently on sale!), there were lots of pink ones to choose from. It was a hard choice for Lulu. And she needed a new swim suit – I think she is having a growth spurt. Unsurprisingly all the items Lu chose were pink. A super pair of swim shoes by Speedo (also on sale), so useful for our summer hols as the beach we go to in Walberwick is predominately stones. A good old fashioned kick board by Speedo, so she can practice her kicking, a lovely long foam pole, a Zoodle by Zoggs, which I have my eye on for tucking under my arms and floating on my back in the lovely sea but for Lu it can again help with her kicking, on her back or on her tummy. It’s just like the ones they use at her swimming classes.

The swimsuit has been a big hit, she has taken to wearing it in the bath. It is the prettiest  pink with blue shiny metallic hearts on and bright green edging. It also has some extra straps on the back which Lulu and her friends seem to think is the height of sophistication. Finally, she chose a very very pink water bottle by Funkita which she now insists I carry around in my bag for her at all times. I am secretly hoping to sneak it off her at some point as I am rather fond of it. Did I mention that pink is my favourer colour too?

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All the products were true to size and she loves each and everyone, how on earth am I going to get all of them, plus Barbie’s essentials, and the suitcases into my car for the summer hols I do not know.

PS I have tiny feet so I have tried the mermaid tail on which fits (very Cinderella) and I cannot wait for our holiday, I may be more excited than Lulu.

A massive thank you to Leanne and Simply Swim for letting us have such fun with your lovely products.

All opinions are obviously my own.

It’s better to feel pain, than nothing at all. (Or – What would you choose – excruciating pain or chronic exhaustion?)

Hmm, difficult on so many levels and the fact that it isn’t actually a ‘real’ choice, after all who would choose either? But, for me I would take the pain over the exhaustion since I have luxury of having both. The exhaustion is completely debilitating for me. It is “bone-crushingly, walking through treacle, dragging water up a hill, can’t remember my own name” awful. Don’t get me wrong the pain ain’t great either. It hurts when I move, it hurts when I’m still, the touch of my T shirt on my skin hurts, everything hurts, inside and out and I occasionally lose my vision because of it. “Well, get some painkillers” I hear you cry but really none of them work for me and all I’m left with now is morphine but I am already dopey enough with the tiredness thank you, and I have to be able to drive to get to work. Those pesky bills simply won’t pay them selves!

I am in the middle of what I believe is known as a ‘fibro flare’, an exacerbation of my symptoms that happens for no apparent reason what so ever but then again no one has any idea why people develop fibromyalgia in the first place.

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So, if I accept that things hurt and that is just life, how do I deal with the tiredness? It really does not matter how long I sleep for, I will still be tired, there is no ‘catching up’. I already take an array of vitamin and mineral supplements, including turmeric for the joint inflammation, magnesium for my insomnia and now I have added ginseng for energy. I eat well but the fly in the ointment is when I am tired, the time you should really eat all the best things, it is the time that I can barely wash my own hair let alone contemplate making anything to eat. My appetite wavers a bit and I then crave bad sugar and carbs blah blah blah.

I’ve made reference to the Spoon analogy before and at the moment it is so true. I have a limited amount of energy, spoons, each day. So I have to make choices, during my flares particularly, most days. If I walk up the stairs at work will I be able to have a shower when I get home? as walking up stairs uses one spoon as does having a shower. So I mitigate my circumstances as much as possible and no, exercising and pushing on through does not help, it makes it worse. I know that I felt particularly bad on Monday as on Friday I had a half day at work and I went shopping for two hours to buy my mum a birthday gift and have a nice wander by myself. I slept until 5pm the next day. Now, one can ‘borrow’ spoons to use from the following day but then the next day you have to manage with less spoons. More crappy choices. I think what I really need is a PA and a house keeper to look after me.You know, stroke my hair, tell me I’m pretty,  and that I shouldn’t worry as everything will work out just fine.

Over the last few months I have grown to be genuinely grateful for my mum and having her around me now rarely makes me grumpy (I am clearly much sicker than first imagined!!!), but wow the guilt I feel around my 6 year old daughter is over whelming. ‘Mummy, why don’t you ever want to play with my barbie dream house?’ err because mummy is using all her energy to stay upright at the moment! – only joking, I’d never tell her the truth but she is verging on thinking that I really don’t want to play with her so I have now taken to saying ‘you know how mummy sometimes gets a bit tired? well, I’m a bit tired now so we can do either do activity a) or activity b) but not both, which would you like? but if even giving options is exhausting, alternatively we can watch a film on the good old ipad instead which she loves and I can nap. But it is very obvious to me that I am not the same person I used to be. Having less energy also means one has less enthusiasm for things which is hard because I am usually one of those annoying smiley happy excited people, ‘Spring is coming hurrah’, I adore Christmas and start decorating in October. I am tenacious and passionate and interested in so many things, the world is an amazing place, but I feel a bit like a tortoise, crawling slowly through the day, no time for distraction, just concentrating on finding the energy to put one foot in front of the other.

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When I was in hospital recently I met a lady in her 70s, we were both waiting to collect our meds. She was an academic that had lectured in economics, still bright as a button and absolutely fascinating. She told me that she lived alone and relied on her friends to help her as she had had an accident a while back and had been house bound while she was on the long road to recovery. The thing she discovered was that in order to allow your body to heal physically you had to somehow turn off your brain, stop using all your energy thinking so much, no pondering life great questions in bed alone at two in the morning. She said of course it rendered her unable to have very interesting conversations with people but that it was a necessary part of recovery that simply had to be accepted. Just allow yourself to rest and to heal. She is right, she sparked something in me, it was almost a permission to allow myself to concentrate on healing my body without feeling like failure. I saw with great clarity that while my body was poorly I had been busy trying to prove that my brain still worked and I could have interesting  informed conversations and still had lots of jolly clever ideas to share. “See, see, I am more than my failing body”…..I see how desperate I may have seemed. Maybe instead of worrying that other people would judge my abilities now that I was poorly, I should stop judging myself. I’m still me, just a hazier version of me and one that needs to lie down more often than I used to but, as my Irish mammy would say “sure, it could be worse.”

Once upon a time there lived a princess

img_5480Tomorrow I am off to Farrow and Ball to seek their invaluable advice about what colour to paint my bedroom and my study. “Oh come on”, I hear you say, “you need advice choosing colours? don’t you just KNOW?” well, no I don’t. I simply can’t choose which is why to a certain extent I only use Farrow and Ball. They have a limited selection which is good for me because too much choice is dazzling but also the quality and finish is second to none and I redecorate maybe once every 10 years so I need to love it and at the price point I literally cannot afford to make a mistake.

I know what I don’t like – isn’t that always the way in life? -but am having difficulty making a final choice.

Lulu’s room is easy – pink. It is already a light pink, Calamine, the same as mine and now she is having Nancy’s Blushes, a true gorgeous brighter pink. She wants a Barbie Boutique bedroom, so out comes the wardrobe, and in goes open copper piping to hang her pretty princess dresses. Also shelves by her bed for her Sylvanian family to live on, more shelves for her pretty shoes to live on and a display cabinet for her crowns etc. I am not entirely sure how this is all going to work but I have two days to do it. I have been promising her that we would re do her room for a few months now, I was the one who suggested it – idiot. But as I remain quite unwell it hasn’t been feasible, also money has been super tight but thanks to my financial whizz of a private banker – no idea why I get this service from my bank – error i think, but I’m not knocking it, I have paid off overdrafts (yes, two) and got a smidgen more to decorate at a lower interest rate that the silly over drafts!!! So now is the time. Also, a while a go a friend of mine was fretting about how best to serve his children in his newly divorced state, phone every day, which they didn’t seem too fussed about, or every few days? From my experience as a child of divorced parent’s I advised that the children won’t remember of what you did do but they will remember what you didn’t, so, parents – please if you can, do what you say you will or it is very disappointing, so here I am about to don an old t shirt and start slapping on the paint.

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The reason decorating my room is so important to me is that I spend a lot of time in bed, and this means that sometimes Lu spends a lot of time in my bed with, watching TV, chatting, eating toast – who cares about crumbs – and I want it to be a really nice place for her to be, I don’t want her to remember mummy bing sick and having to spend time in my room because of that I want her to remember how gorgeous my room was and want to be in it with me. She plays dress up in all my clothes – my expensive cocktail dresses are her favourite, she plays with my make up and I have made sure I have a beautiful dressing table and stool so it is a really nice experience. She favours Mac’s Ruby Woo at present, my six year old has the best taste ever. She has stated dabbling with my Bobbi Brown blusher and is not adverse to donning a pashmina and a statement necklace to finish off the look. I don’t mind at all, she love it and seeing her happy is a joy to me. I’m not an idiot though, the Gina shoes and Mulberry Handbags remain nestled in their protective bags way beyond the hand reaching height of a fashion conscious little girl. But if her feet don’t grow beyond a size 3 she has lots of gorgeous shoes coming her way when she grows up.

If it is of any interest I am torn between painting my room pink, Nancys Blushes, as I bloody love pink, it makes me happy, or so I go for  grey which I also love and means I can accessorise my ass off with pink but also Peignoir appeals. For the study, which is Elephant’s Breathe, I am thinking a darker grey, maybe Pavilion Grey. My friend Kathryn has thrown a spanner in the works by suggesting Pigeon, a gorgeous blue grey. Arrgghhhh.

My week in pictures

Monday

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First of two hospital visits, with a little bit of work afterwards.

Tuesday

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My phone is full of photos of books I want to read, I loved The Miniaturist.

Wednesday

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An innocent meeting with my PhD supervisor ended with me giving up my PhD as illness and time are not working in my favour. Still hurts.

Thursday

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No heating at work and for some reason I am not sweating like a pig.

Friday

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Post Friday Film night cuddles in mummy’s bed.

Saturday

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My mum and I survived Lulu’s 6th Birthday party.

Sunday

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Fairy lights behind my bed? What more could a girl ask for???

 

Tired of looking at myself, wishing I was someone else

The true cost of chronic invisible illness. And I’m not talking about the strain on the NHS or the economy due to lost days at work.

I’m talking about the personal cost. I read a piece recently about a woman who had had her  Disability Claim denied because her assessing Dr decided that, after viewing her pictures on social media “the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill”. He saw literally a snapshot of her life, he didn’t see the other 23 hrs and 55 mins of her day, the effort required to look happy, force yourself out of the house, to endure the ever constant pain and exhaustion is impossible to impart. Every day is a struggle, every single day.

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Ahhh when I went blind for a few months

My relationships have suffered, with my friends as, after a day at work, all I am capable of doing is getting myself home, getting my child to bed before I am literally on the floor with pain and exhaustion. So no more socialising for me unless it is in very short time frames, I have had to cancel plans so often that I just don’t make them any more. With my partner, a lot of the time, merely having my hand held hurts, I think you can see where I am going with this. He is a loving and patient man but why should he sacrifice his needs because I am ill?.

I was off work sick for a substantial amount of time and while my employer was very understanding I do realise that being a team member down impacts on the business and my colleagues, the anxiety of staying at home is real, it isn’t an opportunity to put your feet up and relax. I was due to start my Phd in January of 2016 but had to defer due to my newly diagnosed illness and I commenced in September instead. Today I saw my Supervisor and after discussions had to acknowledge that I am going to have defer this semester too and start again in the September of this year as I cannot keep up with the work required. I cried about this and I am not really a crier.

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Lots of lovely meds

I am not the mother I was or want to be. It was Lulu’s birthday last Friday and I promised her a trip to McDonalds after I got home from work and hospital (I’m in the middle of a 8 week treatment course). By the time I got home I was so exhausted and in so much pain  that I was shaking and couldn’t think straight so I lied to her and told her that McDonalds had flooded – this has actually happened before when it rains- and that we would go the next day but Saturday came and I couldn’t use the last of my energy driving there as we had to drive to a friend’s house for Lulu’s dinner, I am constantly having to make choices based on my energy and pain levels which is acceptable but of course as a parent, and friend and partner, these choices impact on others.

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Can never find a vein

I had a brain procedure sone on New Years Bank holiday Monday but my veins are so bad they couldn’t get the cannula in, after a number of goes they managed it but by the afternoon the bruise was enormous and black, I couldn’t keep it disgusted so Lu saw it and was clearly concerned, it looked awful. Why should my child have to see these things? She is 6 years of age, she shouldn’t think her mum is sick. Last ear I had Erythema Nodosum all over my arms and legs, big painful red swellings, I couldn’t have Lu on my lap or hold onto my arm because it hurt so much. How frightening for her that must have been? Not being able to cuddle mummy when ever you want because you will hurt her?

As a side issue my vanity has suffered greatly. Months of being bed ridden and increasing doses of steroids have left me overweight, bloated – hello moon face !- and spotty, thanks for the steroid endured adult acne. Lulu announced the other day that my tummy was so big it looked like I had a baby in it but that she knew I didn’t and that I was just very big – I’ve had to coach her endlessly on not using the word ‘fat’ as it is hurtful to people. She also added that her dad’s girlfriend had a very small tummy because she wasn’t big – thanks Lu, I just has t0 smile through gritted teeth and agree.

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Back in bed

I can no longer walk very far, before slowing to a snails pace as it is very painful but I walk as much as I can, you know cause its healthy and all that. I spoke with my GP about applying for a disabled badge for parking so I could park closer to the station so the walk would be sorter and the amount of pain I would have to endure would be lessened but apparently I don’t fall within the criteria, the ability to walk more than 50 metres means no badge. I can walk more than 50 meters, in agony, and pain that is so exacerbated that it remains with me most of the day. I am one of those people that fall into a grey area. The fact that I go to wok every day appears to mean that there is nothing wrong with me, that I need no other support or assistance. I go to work, because I have to, not because I necesarily feel well enough to do so, I have responsibilities, a child, a mortgage and it’s just me and my daughter.  So essentially unless I am entirely bed ridden I am not eligible for any assistance. The fact that a day at work (see feature photo of me on train home) means that the other 12 hours of the day are  written off is irrelevant. Cleaning my house is a painful exhausting  and very time consuming event, so I am caught in a Catch 22. At the moment I feel like I am merely existing, functioning, getting though one minute, one hour, one day at a time. Doing the practical and necessary things as far as I can and then there is nothing left for ‘me’. My Phd was for me and now that has had to be shelved.

This post isn’t about self pity, I don’t feel sorry for myself, I feel upset and frustrated and tired and old and frightened. I never thought that at 42 I would feel this way. Never.

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Getting dressed & putting on make up took all my energy that day

So the long and the short of it is just because I look ok, just because I go to work everyday, just because I smile does not mean in any way that I am actually ok. Invisible illness is real, it affects 1000s of people, trust me when I say that I do not feel good. I am trying my best, my absolute best, I cannot explain how hard I am trying.

 

 

My week in pictures

Monday

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My mum got a teeny tiny puppy – a blue chihuahua called Finn.

Tuesday

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I was taken for dinner at Le Manor aux Quat’Saisons. It was all types of amazing.

Wednesday

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As I knew i would be tired after last nights dinner I sensibly booked a days leave from work so I could rest. Pathetic, huh? That’s Fibromyalgia for you, your life is not your own.

Thursday

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Baby Lulu went on holiday to France with her dad and drew this delightful picture of her and I with Livia the sausage dog. Hmmm.

Friday

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At work, a hot sweaty mess.

Saturday

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I puppy sat my mum’s Chihuahua, they are actually playing in this photo. They  played and played and played.

Sunday

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Made Lorraine Pascale’s Gingerbread pancakes for breakfast. We have them every Sunday but I usually omit the spices and add vanilla essence as the children prefer it but as we were child free we had the proper grown up version with squirty cream and maple syrup.

 

 

My week in pictures

Monday

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I blogged about my crappy father

Tuesday

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I ate all of Lulu’s mini boxes of cereal for dinner while she was at her dad’s (gluten free of course)

Wednesday

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Lucia and the puppy slept with me

Thursday

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Back at the hospital for more tests 

Friday

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Celebrating the boss’s 60th

Saturday

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Off for a swim in the Lido in the rain – I promised her!

Sunday

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Woke up to this glorious weather to took the puppy to the park