Tag Archives: work

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..

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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.

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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?

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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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Lunchtime sun

Tuesday

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Photographic evidence that I do actually have a job that I occasionally go to

Wednesday

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Pre bed time walk with my best girls

Thursday

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In bed, as per….

Friday

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And again, with pup this time

Saturday

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Gluten free croissants, yum

Sunday

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Atteneded a beautiful wedding

 

Sunday, Sunday

NB I wrote this over a week ago but was too tired to post it – quelle surprise!!! Here its is anyway.

So, I made it through my first week back at work unscathed – well it was fours days really. Work itself was fine but on Thursday lunchtime I got the phone call from the school every parent dreads ‘your child had fallen off the climbing frame and banged her head’. These things are sent to test us, so my mum was dispatched to collect her and I jumped on train from London and met them at home. Lucia had a nice big bruise but after the ‘can you tell your name? do you remember the accident? Can you count to 10?’ she was deemed ok and so spent the rest of the afternoon watching the Ipad and eating ice cream. Phew.

I was so exhausted by then that I went to bed at 5pm, woke up to eat dinner in bed and then fell asleep agin, I woke for work at 6.30am and felt like I could sleep for the rest of the day. Getting up was hard, really hard, the exhaustion and the constant pain in my wrist, hands, arm and neck are tiring in them selves. But I did it and that’s the important bit. It made we worry though, I had been back at work effectively for 2 1/2 days and I was a physical wreck, this is not boding well.

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However, when I got home on Friday my Tens machine had arrived, all that hope I was placing on a tiny little item, surely I was heading for a fall? but no, I love it, it is amazing, I’m still taking the pain killers but the machine is so effective on my hand and wrist that I am quite amazed. How could something so cheap be so effective? I don’t know and I don’t care, all I know is that it is and I love it. People will stare, but that is not the sort of thing that bothers me anymore, believe me it really used to and that was when I was fine and well! Age and illness frees you somewhat from those thoughts, for me anyway. The machine sends little electrical currents through the pads stuck on your body, it does feel odd, a bit tingly, and sometimes it can be uncomfortable so I turn the strength down but goodness is it effective, I cannot recommend it enough. I have the wonderful @curlyb56 to thank for pointing me in the direction of tens and to this particular machine, she is fast becoming my ‘go to’ gal for all things chronic pain related so massive thanks and kisses to her.

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I spent all of yesterday in bed resting, watching Netflix and just ‘being’, but feeling really really grumpy, in such a bad mood, just looking for something to screech about, my poor mum she gets the brunt of it. She stayed to look after Lu for me and brought me dinner in bed again, she is lovely and kind but does drive me mad.

Today its just Lu and me, so far we have watched endless Youtube videos of Lu’s choice, mainly involving disney princesses while the puppy continues to teeth and chew everything that isnt above waist height but the sun is shining, sort of and I must take them both out for a walk soon. A new week looms and the fear I have re exhaustion remains but I know I am doing everything I can to ward against it interfering in my work life but that in itself makes me worry, what if my best isn’t enough????