This is it, this time I know it’s the real thing

No, this isnt about love, its about something far more important. My PhD. I wrote a little while ago about having to give it up after many years of planning and one short term at uni. At the beginning of this year my Supervisor sat me down and did some honest talking – my favourite kind. I really wasn’t well enough to get all the required work done and was already behind – arghhh, so she said “Take some time off, get better, come back and start again.” So I listened to her. I wept a bit, but I completely agreed. In fact I was so distraught that I went for a run – I know!!!! Clearly I was out of my mind with sadness and confusuion..

Just wanted to post cute pics of my puppy

The idea was always to start again this September but I must be honest and say that there have been many times when I felt that it would be impossible, that I wasn’t really improving very much health wise and that I would never be able to do it. I want to be realistic and I feel a little pressurised, all self inflicted. If I started again in September and it doesn’t work out and I have to give up again it will be the absolute end, I just won’t be able to muster the energy to contemplate a third attempt.

Sleepy puppy

But I am feeling a little improved and being realistic this may be the best I ever get health wise, it could get worse or better but I can only deal with the here and now. So I had a chat with my liver Consultant, who I have been seeing for may years, and he said “just do it, it will be fine”, so I emailed my Supervisor last week and said “please have me back” and she said “of course”.

I have no idea what will happen between  now and September but at the moment I am feeling really really excited about going back to uni. Of course I shall still be working full time, I am still a single mum but that is all fine with me, I’ve taken those things into account, it will be hard, it would be for a completely well and able person, but I am ready. Now, if only I hadn’t spent all my refunded fees money on clothes and expensive candles to cheer myself up!

Ps The images of Livia. my mini sausage, has nothing to do with the content of this post but who doesn’t love a cute puppy picture?

I’ll be there for you

Ah, friends, as in the people, not the TV show. It was always such a big deal in youth to have lots of them wasn’t it? It was a sign of being popular, which in turn was a sign of being worthy I suppose, in our own twisted adolescent minds. Now, I have spent most of my life feeling painfully shy but as time has gone on people I meet and old friends seem astonished that I feel this way because I am very chatty, able to talk to complete strangers – shout out to the lady on my commute last week who told me her lipstick was Mac Ruby woo when I completed her on it! – and generally able to hold my own so I have started to think that maybe I’m not as shy as I thought, who knew?? But I digress.

Friends. I don’t have loads of them, but I have enough of them, its quality not quantity. I am lucky enough to have friends from my primary school, my secondary school and from university. Each of them a reminder of those periods in my life, people who share my memories. This has become more and more important to me as I have got older. I think it’s because I like myself more and I can look back on my youth with the luxury of hindsight and think , you know what, you did okay out there in the big bag world all alone at 18, and things that used to make me cringe when I recollect them, don’t anymore, I’ve given my younger self a break. So now, instead of comparing myself to others and thinking I don’t measure up to peers I enjoy the catch us, the reminiscing. This train of thought has been sparked by my bestest friend from uni returning to the UK for a few weeks jolly from Australia where she lives with her partner and 2 gorgeous little boys. We were thick as thieves at uni, in Liverpool, where we met as we were on the same corridor in the halls of residence, we got drunk, a lot, danced, a lot, and had loads of fun. We drifted apart a bit, we had long term boyfriends, she got a proper job, I faffed about with my part time MA, then moved back to London when I’d completed. She stayed in Liverpool to do her PhD and then she and her partner emigrated to Aus, where she founded and runs super successful publishing house, is there no stopping this woman??? We’ve kept in touch via Facebook, which is really rather passive isn’t it but still a great way to keep up with peoples news but here she was going to be in the UK in the flesh and she would see me in the flesh, much different to my uni days, not helped by being so sick, and hideously bloated – honestly I could fit 2 of my uni days me into my current body. I realise that I may sound hideously vain but there you go, anyway I warned her I didn’t look great but said meeting would be super.  And you know what? It bloody was, I’ve been on a natural high since our supper together. We compared notes, we discussed our lives, as much as you can with a 6 year old in ear shot – I took Lulu with me as I wanted them to meet. And I remembered how much I loved my wonderful friend and why we had been friends for such a long time. It was a timely reminder that I am incredibly lucky in my life, in so many ways, and that despite being basically a social hermit for the last couple of years I can sill hold a decent conversation. Go me!

 

My week in pictures

Monday

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

Tuesday

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

Wednesday

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

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

Friday

Post Friday Film night cuddles in mummy’s bed.

Saturday

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

Sunday

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.

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.

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.

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.

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.

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

Went on a trip to the Natural History Museum with Lucia’s school.

Tuesday

Visited Wycombe Hospital who clearly have a ‘clean’ thing going on.

Wednesday

Embracing the last of the summer sun.

Thursday

Some lunchtime PhD study. Cheery stuff huh?

Friday

Had a little trip to Amersham Hospital.

Saturday

Got my ass in gear and actually blogged.

Sunday

Found my perfect dungarees at Fatface.

We’re not broken just bent

So, I got my fibromyalgia diagnosis earlier this year when things were just awful health wise and it has been with me ever since. I have done a lot of research, spoken to lots of doctors, sought advice from social media and this is what I have learnt;

Fibromyalgia is a disease that affects the central nervous system.

There is no cure.

The main symptoms that I personally experience are exhasution, chronic pain, joint swelling, insomnia and brain fog.

The pain never goes away.

Powering on through the tiredness is not the thing to do.

If I rest for a few hours in between tasks I can get things done.

I have a full time job and cannot rest between tasks.

I have a small child   – see above about rest.

I am a single mum – see above about rest.

I am doing a phd – see above about rest.

I rarely get very much done.

Orange juice makes the swelling and pain worse.

Refined sugar makes me hurt and bloats me up.

Aromatherapy oils in my vaporiser and massaged onto my painful bits really helps.

Dry heat helps (another holiday to Grenada for health purposes?……).

I am allergic to lots of pain meds.

I feel very guitly abut not being able to do simple things.

I feel like a failure as a mother and as a friend and as a girlfriend.

I have to cancel plans at the last minute because I just cant manage to do them.

I have stopped making plans.

 

My week in pictures

Monday

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

I sweated non stop at Lucia’s swimming lesson.

Wednesday

I visited the lovely ladies at phlebotomy.

Thursday

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

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

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

Sunday

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

Video killed the radio star

 

Just call me Doctor.

I love academia, I love books and libraries and lectures, always have. I did my first degree at the University of Liverpool, a BA(Hons) in Classical Studies, but I wasn’t a massive fan of being there. Liverpool is a fantastic city but I was shy, I was lonely and I couldn’t focus. I didn’t have that ‘amazing time’ that everyone else talks about, I didn’t make lots of friends but I stuck it out. I was also in a very unpleasant and unhealthy relationship for a lot of my time at uni which left its mark on me, in some instances, literally. In my first year I didn’t do much and got rather ordinary grades but then I worked my ass off for the final two and got a 2:2, I was pleased with that.

Then I got full funding to do a Masters, I didn’t know anyone else doing post grad study and I remained shy so I retreated into my books, spending hours translating great swathes of Virgil from Latin to English and I thoroughly enjoyed it. I came out of that with a Masters in Classics, with specific reference to Latin and Ancient Greek and a dissertation on Infanticide in 5th Century BC Greek Tragedy – stop yawning, its fascinating stuff.

After that I had no idea what to do so I came home to London and ended up running clubs and bars for 6 years then one morning I thought ‘ooo, I’m a bit bored, I should take a class in something interesting’. I watched Legally Blond and thought yes, that looks fab, and so I did a Law Conversion Degree part time over two years (honestly, that bit about Legally Blonde is true), then a two year part time Legal Practice Course to be a Solicitor, then the required two year training contract which I was super lucky to get as each training contract has on average 100 applicants! Then I qualified as a bright new shiny Criminal Defence Solicitor and I loved it, even the prison visits. But the government decimated legal aid, the on call at nights and weekends wasn’t conducive to baby rearing so off I went to do a pseudo legal job relating to employment law which is what I do now and I am very satisfied. But I haven’t been resting on my laurels, I have been working on a research proposal for the last 18 months and finally it has come to pass, I have been offered a place at Oxford Brookes University to do my PhD!!!! Yeah. I shall still work full time and do the PhD part time, I start in January and its going to be brilliant.

The topic isn’t to everyone’s taste, Why Parents Murder Their Children, but it happens, we can’t ignore it and I think is a worthwhile study.And I’ll also get to do all the important school stuff like buying stationary and pens and making homework lists.

On a more serious note, I am nervous about taking such a vast project on but I am excited, I’ve wanted to do this for a very long time and finally my dream is actually coming true. It’ll be a learning curve, full time work, commute, single mum and PhD but it will all so be worth it, especially when I make everyone call me Doctor.