Tag Archives: lulu

Let’s find a cozy nook Beside a babbling brook

I haven’t really wanted to write for the last few weeks. Every day brings more awful news and no words I have can do the events justice, so I have done the sensible thing and remained quiet. However, Lulu and I did have a lovely little mini break a short while ago and I wanted to write about that, particularly now as it brings me very happy memories.

IMG_6406

Huge deck chairs

As a single mum I am the one that makes Lu do all the boring unfun things like homework, and going to bed and brushing her tangled hair. She witnesses the mundanity of domestic life on the weekend , when we can spend time together, as I work full-time the week nights are pretty much, homework, bath, bed. However she recently asked if we could go away to a hotel, just her and me. I have no idea where the thought came from but it sounded like a great plan, a mini break for us both. Away from the distractions of boring home life.

I needed somewhere close by so the drive didn’t exhaust me, also as I won’t drive when I have taken my painkillers so I was limited distance wise. I was originally quite taken with the Cotswolds, about an hour and half from our home. Cute little villages, just right for a stroll,  a place that did good food so we didn’t have to fend for ourselves but as my online search continued I came across the The Great House at Sonning in Berkshire and the plan changed. It was perfect, on the river, beautiful looking rooms, lovely restaurant menu, a bar with loads of sofas for pre dinner cocktails and a luscious looking deck chair strewn lawn leading down to the river. I managed to nab the last room on the Saturday night I wanted and opted for the more expensive river view room (£180) as a treat for us. It is also worth noting that at the moment there is no two night minimum stay at the weekend which makes it a much more affordable option for a jaunt away. I also requested that a bouquet of flowers be left in the room for Lulu as it was our first mini break together and I wanted to spoil her, the lady on the end of the phone was incredibly helpful and indeed the bouquet from Sonning Flowers (£30) that we arrived to was perfect for a 6-year-old girl. I booked dinner for the evening and breakfast the next morning, having discussed my Coeliacs disease requirements (gluten free food). The lady I spoke with was completely unfazed by my food requirements and that is always a good sign, much better than the ‘you’re what?’. An immediate anxiety attack follows that comment.

IMG_6337

Lu was particularly taken the picture of the stag, there were more lining the hallways

IMG_6343

Bathroom of dreams…those tile though

IMG_6338

My favourite part of a hotel room? the air conditioning or fan

I dropped the mini sausage dog off with my partner, dogs are allowed – woohoo – but I wanted to give Lulu my undivided attention, and he gave us a lift to the hotel as I was flagging a bit. We arrived for check it at about 3.30pm, the weather was picture perfect, sunny and blue skies. Check in was painless and we took our bags up to our room which was just as lovely as the website photos and the best bit? A fan in the room. Lu was thrilled, a massive bed, the big tv, a lovely spinning desk chair, a shiny bathroom with a shower so big that lu could lie on the bottom and present to swim. There were also jars of sweets, biscuits and fresh milk in the fridge.

Lu is as impatient as I am and after admiring the room and opening the windows off we went to explore the bar. At this point I must say that out room was over what turned out to be the resultant and outside dining terrace so there wasn’t much of a river view, save a sliver in the distance if you stood up tall, and the noise of the customers kept me awake during the night as it was so hot I kept the windows open, however I was so disturbed that eventually I relented and closed them. I did mention this to reception when I checked out so do be mindful where your room is. The other half of the building over looked a second beautiful lawn leading down to the river that is used for private functions though you may run the risk of being kept awake by the tradition wedding disco.

 

IMG_6379

I had the very same ballet bag when I was little

The bar and restaurant is called the Coppa Club and seems to manage to be all thing to all men very well. A lovely chrome bar with stools and an amazing cocktail and wine list. Comfy sofas for lounging and there are beautiful old paper backs scattered around for you to browse. As Lu and I sat at the bar drinking lemonade and drawing in her colouring book the rest of the bar consisted of ladies lunching, people working on laptops, families and couples drinking Pimms. Lu decided we needed to move to the beautiful velvet sofas and I took the opportunity to confirm our dinner booking and my gluten free status. After a while we ventured out onto the lawn with our drinks and relaxed in the deck chairs, listening to the music playing at just the right volume for me, people watching and admiring all the dogs in attendance. There was a bar outside which  had a BBQ going should you be minded. Lu was not a fan of the deck chairs and made us move twice. I add that the place was packed, we were lucky to get seats. There was also a wedding reception taking place on the next lawn, the bride was having photos taken by the river and she looked gorgeous. Lu loves a bride, I think she is quite taken with the ‘princess’ concept. So we admired her for a while and then decided to get dinner early. The restaurant staff were utterly charming. We were seated by the open doors to the terrace with was perfect as it was still so warm. Our waitress talked me though the menu and Lu got her own menu. We both opted for streak and chips. I had a crab linguine to start, Lu went off kids menu and had broad bean and feta humus – not a hit with her. However our mains more than made up for it, they were absolutely delicious. Mine came with huge grilled mushrooms and Lu and I cleared our plates. She drank a coke, which she had been looking forward to since I had made the booking, such treat for her (mean mummy) and I had a Seedlip and Fentimans tonic. Seedlip is a delicious non alcoholic spirit, a bit like gin. It was delicious, icy cold and refreshing. A fantastic substitute for alcohol, I gave up drinking over 3 years ago, but there is only so may elderflower presses that a gal can drink.

IMG_6419

Outstanding food and such good prices

Pudding for Lu was ice cream and for me a butterscotch pot with salted caramel. It was sensational, Lu and I were literally fighting over the empty shot glass it had come in. I shall be asking for the recipe. Then Lu wanted a cuddle so clearly it was time to go to bed. We had a fabulous shower, with the most enormous rain shower head I have ever seen. Then into bed to watch Over the Hedge on the iPad.

After a less than restful sleep – see note above about room location – but  superbly comfortable bed we awoke to the horrible news about the Tower Bridge and Borough Market attacks. I made a few phone calls to ensure that everyone I knew in the area was ok and since it was plastered across the TV and had the great pleasure of explaining to Lu, in language that will not terrify a six-year-old, that again, after the Manchester Area ‘fire’ some people have done some very bad things and some people had been hurt. We then called nanny, who live in Greenwich to make sure she was ok and for Lu to tell her all about the incident.

IMG_6451.JPG

Breakfast on the terrace, we felt so sophisticated

The sun was blazing so we had breakfast on the terrace. There was no porridge which Lu had been looking forward to – though she never eats it at home – so being my child she ordered a plate of bacon and a fresh strawberry cocktail. I had a salad of watermelon with yoghurt, lime and coconut which was fantastic, and of course – coffee. The terrace was extremely comfortable, cushions, throws, anything you could want. We had let time get way from us while we were watching the news and so packed up quickly after breakfast and lazed around on the lawn again, this time on bench which Lu much preferred and waited until we were collected and whisked off of a lovely family lunch.

IMG_6468

Lu dressed as Dorothy. She loves a dress up outfit

The other slight disappointment, apart from the noisy room, was that the hotels website picture gallery showed children river swimming and Lu and I were rather excited by this, we even brought our swim suits. However, when I asked at reception they said they hadn’t heard of anyone swimming in the river, I had to bring up their website on my phone to show then the photos but still nothing.

 

As a complete aside, and by a very strange coincidence, I have actually been to that hotel twice before when it was in its old form, both times with my ex husband, for a huge family birthday party and then for a family wake. It had not occurred to me it was the same place until we turned not the car park, small world huh?

The Great House underwent a huge refurbishment last year and looks nothing like it did.

IMG_6384

One of the many cute dogs we encountered

Lulu and I had a wonderful time, all the staff were simply delightful and made us feel so welcome, we even go smiles and waves as we left the car park. I would go back and stay in a heartbeat. I am very envious of the locals, they get to pop in whoever they want. However, it does seem to be a great place to hold a wedding……

IMG_6487

Why do you have to go and make things so complicated?

As a lawyer I am very familiar with the ‘clean break’ theory that is trotted out when discussing divorce but obviously when one had children, providing all is well with both parties, then this is just not possible, financially or personally.

So where does that leave the grown ups? In general, and as far as can be expected, my relationship with my ex husband regarding Lucia is pretty much based on reading from the same hymn sheet. However since she lives with me and he moved an hour and half away there are some decisions that I make for Lu that aren’t going to go in his favor but realistically someone will inevitably lose in situations like this on occasion.

I have no interest whatsoever in my husbands life, beyond his relationship with Lucia. Of course his health is important to me as he needs to be able to look after Lu but we aren’t friends, it isn’t how he wants the relationship to work despite my suggestions and that is fine – kind of. Being honest, I still find it odd that he can walk out on me after 14 years and feel ok about throwing all that history and shared experiences away, but each to their own.

IMG_3105

A few weeks after my ex husband left

But (isn’t there always a but?) recently my ex husband’s girlfriend of 4 years broke up with him. This was further complicated by the fact that he lived with her and her two young children. This of course had a knock on effect on Lulu which of course had a knock on effect on me. When did life get so complicated? That my ex husband’s break up should effect me in any way is ridiculous but of course Lulu was very upset as her dad was moving out of the house she stayed in with him, his home. Also the fact that she wasn’t going to see her dad’s girlfriend’s children anymore all added to making her feel very unsettled and I was left picking up the pieces. Through gritted teeth mind, muttering “for fucks sake hasn’t this six year old had enough disruption?” grrrrr. Next came Lucia’s expectation that now her father was single he would be moving back in with us. She was utterly heartbroken when I explained that wasn’t going to be happening as that wasn’t what her father wanted. Lucia’s distress and the tears she cried while I cuddled her broke my own heart all over again. It truly feels so bloody unfair.

 

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.

IMG_5936

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!!!

IMG_5940IMG_5945.JPGIMG_5942

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?

IMG_5954

IMG_5956

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.

img_4804

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.

img_4928

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.

img_5474

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

img_5190

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

Tuesday

img_5193

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

Wednesday

img_5201

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

img_5208

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

Friday

img_5230

Post Friday Film night cuddles in mummy’s bed.

Saturday

img_5243

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

Sunday

img_5253

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.

img_0479

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.

img_1384

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.

img_5165

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.

img_5116

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.

img_5154

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.