Tag Archives: hospital

Cause it makes me that much stronger, Makes me work a little bit harder

I have been a member of the Spoonie community for a lot longer than I realised, I was diagnosed with a chronic liver condition (autoimmune hepatitis) when I was 24, and will be taking medication to keep it in check for the rest of my life. But as long as my liver behaves itself it really doesn’t have a huge impact on my life, you wouldn’t know I was unwell at all, no time off work, no physical difficulties, but then I became really sick a few years ago and I became a fully fledged member. Hello, chronic pain and chronic fatigue, fibromyalgia and arthritis!

It often feels like these are impossible conditions to live with and I really do mean ‘live’, because at it’s very very worst it doesn’t feel like you are living. You barely exist and often feel like you are actually dying, of pain or exhaustion, of memory loss, of the inability to think at all. It is utterly and completely soul destroying and you don’t even need the wee small hours of the morning to impress upon you the isolation, the unending trauma and the fact that no one at all can tell you when and if you will ever feel any better than you do right now. Draaammmmaaaa! Well, no, not really. I have often heard people refer to different phases of their lives, such as before children and after children, but my life is defined by before chronic pain and after it started. I cannot impress upon anyone how completely my life has been altered by this condition, I have no control over my own ability to function. Told you I wasn’t being dramatic.

But I am a very practical soul and have spent, and continue to spend, a great deal of time reading up about developments in my conditions The British Medical Journal is always a great source of info for latest studies and research and I have seen some of the doctors I have found through this research. I refuse to believe that this is it, that the medical profession has reached their conclusions and that there will never be a better way to treat my illnesses. I have investigated and tried many medications and assistance aids over the years and, while I am not going to write about the meds right now, I thought I would share some of the assistance aid purchases that I have made that have actually helped.


My faithful Yuyu

First up is the Yuyu, a long hot water bottle that you can sling around your neck, it comes with a tie at each end so it can tie it security around your back and walk around quite happily. Why no one has thought of this before I have no idea but I quite happily wear mine under my coat on old winter days when I collect Lu from school, I suffer from excruciating pain around my right shoulder blade so I can manoeuvre this like a jaunty sash and it eases the pain. Cold is a real issue for exacerbating my pain so this has been a godsend. They are a little dear, starting at £33, but to me, mine has been worth every single penny and maybe something to ask for as a Christmas gift.


Multitasking. Please excuse my terrible taste in Tv programmes. Catfish is a real weakness of mine.

My second useful item is a bed desk on legs, specifically made to use with a laptop so it has holes allowing the computer to cool down. No more hot laps and wondering if your computer is going to go into literal meltdown as you binge-watch Netflix as sometimes when bedridden box sets are the only thing that one can do to pass the time. I got mine from Amazon.


All the hospital glamour.

My next recommendation may seem slightly odd but works for me. Soft blankets, the fleecy type, when my skin hurts and I ache inside the thing that helps the most is lying on one in bed and having one to cover me, its something about the softness that I find comforting, a bit obscure, maybe its a infantile cozy security issue that one needs to fulfil when feeling so so sick but it does help my pain. I took one to hospital with me to lie on when I had my last procedure and I tell you it made it more bearable, even if I did get odd looks. I have a few of these ones and a few of these. They are relatively cheap, Primark does good ones as do most supermarkets.


This doesn’t come with a cover, the thing you can see to the left is part of the Starship Enterprise that Lucia has been making out of a cardboard box.

Next is a lightbox. Being inside so often, not always able to do the obligatory go outside and see the daylight means I suffer from SAD, and actually I have for an awfully long time so to address this I got myself one of these and it has made a huge difference to my mood, I’m not composing poems to the beautiful sun but I am feeling less blah. I pop it next to my bed, in my living room or on my desk, whenever I go it comes with me and I have it one for maybe an hour a day.

Finally, let me introduce you to the thing has diminished my physical pain by the most. It is a neck support memory foam pillow which has a large or small hump, depending on which side of the pillow you use. I don’t really know how to describe it, so when you put your head on it your neck is supported and your head almost dips back to what would seem a much more natural position when sleeping, it is hands down the best thing I have ever bought and the thing that I cannot be without. I take it on holiday with me, I take it everywhere I will be sleeping. See the photo for the humps and a soft blanket thrown in.

It is worth noting that all of these aids are portable and the fact that I can take them with me places means that I can go places without having to reap not only the tiredness of travel but also the setbacks caused by compromised comfort.

Amazon also deserves a shout out for those of us who are housebound or lead lives of unpredictable ability. I pay the subscription for Prime next day delivery and it has been my saviour, my contact to the outside world. Let’s face it chronic illness means our best-laid plans are often thrown into turmoil within a matter of hours and something that was as simple as a drive to shops to pick up a gift for someone’s birthday becomes an impossibility. So it has enabled me to order everything from birthday gifts for my daughter’s friends parties to straw for our house rabbit, all delivered in a timely manner. Mostly.

I have no affiliation to any of these companies but thought others may find this information useful, either for yourself and or someone you know.

My week in pictures



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



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



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.



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



Post Friday Film night cuddles in mummy’s bed.



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



Fairy lights behind my bed? What more could a girl ask for???


My week in pictures



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



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



Embracing the last of the summer sun.



Some lunchtime PhD study. Cheery stuff huh?



Had a little trip to Amersham Hospital.



Got my ass in gear and actually blogged.



Found my perfect dungarees at Fatface.

My week in pictures



Lucia’s daddy bought her a new bike in ‘Tiffany Blue” & she grew up over night!



Had to get my hideous scarred legs out as I was SO hot.



Did a spot of birthday shopping for M.



Off to another hospital, not for me for a change.



Hospital appointment for me.



Took my leopard print shoes out for dinner, they never get to go out!!



Sun was shining so took pup pup for walk/run.

My week in pictures



At the hospital….again



Back to work



My coffee flask becomes my permanent companion



Me and my pal



Friday frolics



Off to the big smoke



Lucia went to see her dad

My week in pictures



First of three trips to the hospital but my mani matches me boots.



Lucia’s Starwars costume for party she need up too poorly to attend.



Off school poorly.


Refusing to sleep anywhere else apart from on top of me.



Back at hospital.



Super King bed but all squished into one little space.



My face needed some loving care.


Saturday night in A&E with Lucia.


Lucia rocking cool kicks at the hospital.



Glitter makes everything better.


My week in pictures



My vision cleared enough and for long enough for me to read a book, it was good.



The very talented Miss Mercedes came to my house to give me a mani and pedi.



Brushed up on illness before seeing Neurologist.



Post hospital treat at Five Guys (gluten free obvs).



One of my besties came to see me.


Another day another hospital.



Had a quiet day hanging out with the puppy.



Not feeling great – Before.





Lucia’s dad adopted a new kitty cat.

My week in pictures



Have had my beloved Filofax pristine for ten years. Two minutes with the puppy and this….



Another day another hospital appointment.




Gave in and watched Making a Murderer with puppy for company.



Glamorous movie star look – well actually felt exhausted so lingered in bed.



Bedtime cuddles & some awful children programme on Netflix.



Spending time with a good friend was good for my soul. 



Lucia and I hanging out in bed, it was heaven.



Keeping it real – Lucia took this.

We keep this stuff in this photograph, we made these memories for ourselves

I didn’t want to do a ‘review’ of 2015 as, whilst looking back is interesting in some respects, for me over analysis is not always helpful. I am always mindful that ‘the past is a nice place to visit, but certainly not a good place to stay.’ So, I have chosen 12 photos that illustrate my 2015, there isn’t one from each month but one from each of the significant significant events that happened.

12 photos, 12 months

1.We got a Puppy


2.Lulu started school


3.I was off work and in ALL the hospitals


4.I fractured my wrist


5.I went to New York for the first time


6.I went to Suffolk (twice)


7.My Decree Nisi was granted


8.Christmas happened


9.I saw my mum, alot


10.I planted and harvested from my allotment


11.I got offered a place for my Phd at Oxford Brookes


12. I turned 41


I can see clearly now the rain has gone

The last few weeks remain challenging as my illness goes on as do my visits to hospitals & doctors & consultants – oh my.. but the latest developments is a blinding skull crushing endless headache that has been my constant companion for two weeks now, it is affecting my vision, I wear sunglasses all day and spent most of the time lying down in a darkened room. Screen time is limited because it is too painful and it also means I can’t read anything. I’m dosed up on lots of lovely painkillers that aren’t quite touching the sides of the pain and they mean that I can’t drive essentially leaving me housebound. This situation has therefore forced me to literally just ‘sit and be’.


I was feeling most despairing of the situation until I hit upon a drug combo that helps lifts the pain slightly for a for a few hours a day and it has been during these periods of time that I have developed a clarity about the things that I enjoy doing and that bring me genuine pleasure. Top of my list is reading, I adore books, all looks, old books, new books, Amazon & Waterstones are my guilty late night online shopping addictions. I have missed reading for the last few weeks, my little forays into other lives and worlds, the importance of being able to pick up and immerse myself in a book has never occurred to me to be anything other than ‘just what I do’ but since I haven’t been able to I have been reminded what a simple and satisfying pleasure and, often a comfort,it is to me. It is not something I shall take for granted again.

I am now also extremely grateful to the BBC Radio podcasts that have allowed me to listen to books instead, so far Rogue Gerries, Mary Barton and part way through Vanity Fair. In Our Time has also become a firm favourite, a 45 minute discussion on a specific topic hosted Melvyn Brag with a panel of experts, the topics are very diverse; history, religion, science etc, it has taught me loads.


As a parent, something I am ashamed to admit and wasn’t really fully aware of was the fact that when I am with baby Lulu I am not always 100% ‘present’. But lately we have been lying in bed together cuddling and talking , listening , and giggling together. I realise that gleaning pleasure from these things seem ridiculously obvious but for me I feel that its been the silver lining of my time off work, and the inability  of me to be detracted by the TV or phone or tech has given me the gift of time with her and it has been an honour.


I’ve learnt not to sweat the little things too much, when you are in chronic pain, unable to see properly and suffering from insomnia the fact that I haven’t hoovered for  week and the floor has ‘bits’ on doesn’t seem very important at all, its not even been put high on the list of ‘things to do’. I have lost my appetite but cups of gorgeous to chocolate with sticky sweet unctuous marshmallow melting on top has brought me great comfort, as have hot water bottles on my neck, lying down for an afternoon nap, being able to really listen to what my body really needs, sleep, food, water, and the company go my constant companion, Livia.