Tag Archives: birthday

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???

 

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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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Lucia had her first guitar lesson, at 8am on a Monday morning! And it was ‘Talk like a Pirate Day’ at school so she went as a princess, obvs.

Tuesday

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I sweated non stop at Lucia’s swimming lesson.

Wednesday

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I visited the lovely ladies at phlebotomy.

Thursday

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I made a start on my PhD, on the train to work, during my lunch hour, on train home and after Lucia went to bed.

Friday

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Took Livia the Dachshund and Finn the Chihuahua to collect Lucia from school. They get loads of attention and they are always so excited when they see her.

Saturday

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We celebrated Livia the dachshund’s first birthday. Any excuse for cake in my house.

Sunday

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Hibernated while enjoying this gorgeous candle. Oh, how I love Autumn.

It’s my party and I’ll cry if I want to

At the beginning of January Lucia turned five, which in my head seems much older than four and a lifetime away from three, she is now actually a proper bona fide walking talking little girl. I admit that it must be a bit crappy to have a birthday so near to Christmas, people trying to amalgamate gifts etc but so far this hasn’t happened to Lu which is good. She was meant to be born on my birthday in April which I was furious about as I’m not good at sharing (might be the whole only child thing) but as things turned out she was a January baby. The other thing that is a little rubbish about winter birthdays is that the weather is always shit and so out doors stuff is never a option but who am I kidding, even if her birthday was in July there is no guarantee of sunshine.

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Pre party outfit

Last year was the first time idid a ‘proper’ party for her. I rented the village hall, made sandwiches and played pass the parcel and all her nursery friends came, I had loads of super kind friends who helped me do it all and a wonderful time was had by all.

This year was a tad different. Let talk about school party politics. Lucias’ Reception class has 60  children in it, they are then split onto four sets of about 15 and each set pairs up with one other, so really she spends most of her school time with 30 kids. We were all given the names of these children at christmas time, I think with the aim of knowing who we needed to write christmas cards to so I had my invite template. I asked Lucia who out of the list she wanted to come and then added a few others that she had left out as they are nice children and she had been invited to their parties. Phew. I also invited some of her friends from nursery who she is still in touch with. I gave the invites to the teacher to put into the bags and then waited for the RSVPs – which never came. Why? So frustrating. By the morning of the party I was expecing anything between six and 30 children based on the number of RSVPs I had received. Friends with older children who’ve ‘been there done that’ assure me that this is totally normal, for me it was totally frustrating. So i erred on the side of caution and catered for 30, in the end i think it was about 12 children but they included Lucia’s most favourite friends so she didn’t notice how few children there were. It was only looking back on the photos that I noticed as most parents stay for coffee and made then hall look fuller than it actually was.

What a potential emotional nightmare? As adults we fret that no one will turn to our parties , imagine how a five year old would feel if no one showed up?

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Elsa and me

So to cut a long story short it all worked out fine in the end. My super friend S, who is also a chef, bought and made all the party food and drove it over and set it up, she also made the requested unicorn cake. R, my other super friend, came early and helped set up the tables and C & D, Lu’s god parents helped decorate.  I put the older children to good use and had them blow up the 40 balloons – twith the aid of a hand pump – I’m not Cruella de Vil you know.

I also found this amazing company online called Boxed up Party, you choose from a number of themes on offer, rainbow unicorn was perfect for me, and then choose how many children and they send you a box containing all that is needed, cups, napkins, table clothes, plates etc, I also ordered the ready made party bags, it was fantastic, great quality stuff and really cost affective, believe me I shopped around for ages and they still came in as the best value. I orders additional mini bubble bottles for the party bags but they had leaked when they arrived so I couldn’t use them but the company gave me an immediate refund and a apology which was fantastic. I cannot recommend them highly enough. Ps they haven’t paid me to say this, I’ve never come across them before but I do love a one stop good qulity shop and thought I’d pass the info on.

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My Aussie friend made these – fairy bread apparently.

Is there a secret amount of competitiveness going on re children parties and entailment? I’m not sure, Lu has been to parties where parents have hired people who do the whole shebang, entertainment, bouncy castle, games and food, I think its sensible considering how much it costs to do all the parts separately. But I had not arranged any entertainment, I have no excuse, illness, pooryliness blah bah blah. Three days before the party I was in the midst of starting to accept that I would have to do all the party games ever to keep five year olds entertained I contacted a parent at Lu’s school who does entertainment at parties and begged for help, she was booked for the day but put me in touch with a colleague who could help and snap, it all fell into place. She did a neon disco games theme, the children loved it, they danced, ate, ran round, made a mess and then all went home. Horray.

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After – As if we had never been there.

In our bath that evening I asked Lu if she had enjoyed her party, waiting to bask in the glow of parental victory but she said no, it was boring and where was the teacup roundabout? I shall explain. The village hall, where Lu had her party, is also where the Summer Fete is held and on the green in front of the hall there is usually a teacup roundabout ride Lu clearly imagined it would be there for her birthday too – ooops. I think I need to up my game next year. After her comment I did actually look up hiring teacup roundabouts for next year but at an average £750 plus it is not going to happen!!!

 

 

 

 

Happy Birthday to me, Happy Birthday to me.

IMG_6116Today is my 41st birthday and I am unsure how I feel about it. Mainly because I’m feeling rather unwell, see last post, Some of my favourite things.  I’ve never had that ‘oh my God I’m turning.. ‘ apart from my 21st when I found the first unsightly vein in my leg, how shallow! I was busy when I turned 30 planning my wedding, when I turned 40 I didn’t bother celebrating as I was mourning my husbands departure (not from this earth but to Northampton to live with his girlfriend) and now 41 feels old, arrrggghh soon i’ll be 50!!! I can’t be nearly 50, inside my head I’m only 20. Right time to get a grip. Today I got up early, baby Lulu gave me the Frozen birthday card that she had chosen and written all by herself, and I received a very beautiful candle from M (the delightful boyfriend) which he covertly purchased yesterday during a jaunt to Darsham Nurseries, very pretty. My mum also presented me with a card. She has already given me this beautiful sewing machine. I love it and have even subscribed to a lovely sewing magazine as I have no idea how to use it. Obviously the machine still remains in its box. But I WILL use it.

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I went into Southwold and had a massage, manicure and pedicure at The Retreat. Ask for Lorna, she is the best. I stopped off at The Southwold Bookshop to buy my mother some books to say a massive thank you for baby sitting while M and I enjoyed some child free time.

 

 

 

 

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A quick coffee at The Two Magpies Bakery while I waited for M to finish his manly massage.

 

 

 

 

 

 

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And then a mad dash home to collect the troops to go for a delicious lunch at The Anchor in Walberswick.

Topped off with a heavenly nap when we got back to the house, all alone in bed, no children banging me on the head with dolls or demanding to change Disney princess outfits.

It has been a lovely day and I am grateful to have had such delightful company to help me celebrate it.