Tag Archives: Phd

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

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

Tuesday

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

Wednesday

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Embracing the last of the summer sun.

Thursday

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Some lunchtime PhD study. Cheery stuff huh?

Friday

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Had a little trip to Amersham Hospital.

Saturday

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Got my ass in gear and actually blogged.

Sunday

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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

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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.