Friday 9 February 2018

A Health Update - February 2018

As I mentioned in my 2017 highlights post, my health went dramatically downhill last year so I thought it would be worth posting an update about what actually happened and is happening I wrote this all out & realised how LONG it was, so I've split it into months to break it up a bit!

Early 2017
I was referred to the Rheumatologist again in the first half of last year because I was experiencing a lot of neuropathic pain and no GP I saw would prescribe me anything for it or increase my Gabapentin. I take 1800mg of Gabapentin a day, which was last increased in October 2016. It took until June for this appointment to come through. The Rheumatologist suggested 2 meds I could try and referred me to physio as well.

Despite the fact that I saw the Rheumatologist in June, the letter from her didn't actually arrive until September. By this point, I was in considerable pain that was lasting weeks in one body part before moving to another. I started on 30mg of Duloxetine once this letter came in. I also arranged with work to change my work pattern to the afternoons, as I was starting work at 9 but was struggling to get my pain under control in time to get into work and was suffering with bad insomnia due to the pain so was getting very little sleep. The change in hours DID help, but by this time I was in so much pain that it was too little too late really.

Towards the end of October I finally had the Physio appointment that had been requested in June. This was actually one of the most useful medical appointments I've ever had; the physiotherapist did a really thorough examination, pointed out how weak all my muscles are (though ofc I did know this) and gave me a really detailed series of stretches I could do to help improve this weakness. I asked for stretches because I have actual exercises from a previous physiotherapist but by this point my body was too weak/in too much pain to do even them. The stretches are much easier for me to manage, though extremely painful because one side effect of my condition is that all my muscles tighten up. The physiotherapist also booked me in for a course of hydrotherapy.

Unfortunately, at the beginning of November the nerve pain got so bad that I was unable to go to work. I was experiencing it in my hands and forearms, my lower legs and my right thigh most of the time and it was unbearable. I really struggled to get this pain under control and often it didn't alleviate until mid-afternoon. 3 GPs refused to increase either the dose of Duloxetine or Gabapentin and so instead I ended up not working for the whole of November.
I had started my hydrotherapy at the very end of October and while each week I could see an improvement in my ability to do the exercises, it left me exhausted and in pain to the point that I had to spend most of the rest of the day asleep and all of the next day bed-bound.

By this point I wasn't doing much better. When I had to get my next sicknote I managed to speak to the only GP at my practice who I think is reasonable, and he agreed to increase my Duloxetine dose (he actually told me I should have been started on that dose *eyeroll*) and he also agreed to refer me to the pain management programme at a nearby hospital, which a previous GP had refused to do. I have high hopes for this though god knows when the referral will come through!

By mid January I'd had terrible insomnia for over a month...and finally realised it was probably linked to the increased Duloxetine. This is unfortunate as once I'd been on the increased dose for over 4 weeks I could tell my pain had decreased significantly, but insomnia not caused by pain is too much of a price to pay for this; I was suffering from lack of sleep but emotionally I was also suffering from the frustration of simply not being able to sleep, and this had taken a massive toll on my mental health. I switched to Nortriptyline which I was hesitant to try because I had an awful reaction to Amitriptyline and this is similar, but thankfully that didn't happen. I wont know if it's actually helpful for my pain until it's fully in my system. 

The GP I saw to issue me a new sicknote agreed to refer me to Neurology because of this pain and other neurological symptoms I have, and I'm hoping that might provide some answers. 

At this point I'm feeling significantly better than at the end of 2017, though the longer I go without taking any Duloxetine, the more my pain increases. At the moment it's tolerable though I am concerned about what will happen once the Duloxetine is out of my system completely. I feel like the Nortriptyline is making me feel brighter and less fuzzy than I was before; my mind feels a little bit sharper and I'm definitely sleeping better. I'm seeing a GP soon and hoping I can increase the Nortriptyline dose to combat the effects of stopping Duloxetine. 

So what are my next steps?

Hope this pain management referral comes through this year - I think I probably do need some techniques for dealing with the pain. Obviously I have been in pain my whole life, but it gets to a point where you're in so much pain and you've been in pain for so long that your ability to cope with it is just not there anymore. I don't know how long the waiting list is for this service but I can imagine it's considerable

Hope I get a Neurology appointment - I've already received a letter to tell me that my case will be assessed to decide if I need an appointment or whether to send me for a test etc. I'd really like to speak to a Neurologist so I'm hoping that's what happens

Maintain my physio routine and add as much other exercise  in as possible - I do need to get stronger and I know from past experience that regular exercise does help. So I need to be doing as much as I can without it making me worse. I have been trying to out for a walk at least once a day, even if just for 10 minutes which is a good start. I also want to start swimming again soon.

Wednesday 17 January 2018

Christmas Giftcard Book Haul

I don't often get vouchers and things for Christmas so I was pretty excited this time as I got quite a few Amazon vouchers and a Waterstones voucher!! I don't tend to buy books on Amazon too much because I do like to support bookshops, but I thought it would be cool to use the vouchers to buy US books that I can't pick up in a shop. I'll be using my Waterstones giftcard throughout the year on new releases :) 

Meg and Linus - Hanna Nowinski
This was actually my final read of 2017! It was sweet and I liked it, but I didn't love it. It was very cool to have a book with 2 gay protags as that doesn't happen all that often, but I wasn't blown away by the writing style. It would be a good book for you if you liked Queens of Geek. 

I've read this one too, it was my second read of 2018. I loved this one a lot; it has tonnes of elements I love in a story like magical realism, complex sibling relationships, and intense longing. The writing was beautiful and I found myself reading it slowly so as to fully appreciate it. This one has a waiting list of friends looking to borrow!

Of Fire and Stars - Audrey Coulthurst 
I bought this one as a friend of mine loves it and it sounds very up my street (plus the cover is beautiful!) I'm hoping to read it soon.

Made You Up - Francesca Zappia
Eliza and her Monsters by the same author was one of my top ten books of last year, so I was keen to get hold of her other novel. This one also looks at mental illness but it's more central to the plot than in Eliza and Her Monsters which looked more at fandom. I'm looking forward to it though it is a pretty big book!!

Everything Leads to You - Nina LaCour
I actually read this one prior to buying it! I borrowed it from a friend and I really enjoyed it. It's a really nice, fairly happy lesbian story which is cool as there aren't many. I've had the urge to read it again for a while now, so instead of borrowing it again I bought my own copy. I love Nina Lacour's books so it's nice to buy another to support her further.

Have you read any of these? Did you get any books for Christmas or buy some with any money or vouchers you got?

Monday 8 January 2018

30 Things About Me

As I haven’t blogged in so long I thought it would be cool to do a post with a bit more about me in, but instead of just doing a bio or something I thought I’d post a 30 Things About Me type thing! 

My health condition is: Generalized Hypermobility Spectrum Disorder, previously known as Joint Hypermobility Syndrome. I was diagnosed as a child over 20 years ago 
The worst symptom is: fatigue for sure 
This year I want to: improve my health as much as possible. And swim a mile
My starsign is: Scorpio. I mean technically now Libra but no. I’m such a Scorpio 
I wish I could: apply makeup. I just...can't
My favourite cheese is: Comté
One bizarre thing I love is: walking round empty-ish supermarkets, especially late at night. Looking at food on shelves makes me feel calm
On weekends I: mostly sleep and watch tv! I'd love to do more but I'm always shattered
The best thing to ever happen to me was: probably getting my job in publishing. It was my dream job & living in London was amazing
My favourite book is: both Saving Francesca and Jellicoe Road by Melina Marchetta 
When I'm ill I like to: watch mindless tv in bed while my boyfriend fetches me drinks and treats
The place I really want to travel to is: Cuba! I would love to go to Cuba 
Something I dislike about myself is: I'm incredibly self-indulgent 
I would love to move to: Edinburgh. That city has my heart
Everyday I take: at least 10 pills, but it can be up to 28 depending on pain levels! 
My favourite TV show is: historically, Buffy. More recently, Hannibal. On TV right now: Riverdale 
I really want to learn: French! 
If I won a million pounds tomorrow I would: buy a house, super boring
The most expensive item I own is: my MacBook Air. Worth every penny 
I'm really good at: swimming! I think my hypermobility helps me out here 
One food I hate is: mushrooms. In all forms and contexts 
I love making: homemade salsa. Time consuming but delicious 
An embarrassing fact about me is: after a shower I let our puppy lick the water droplets off my legs. She loves it! 
I couldn't live without: reading. Reading is and always has been my favourite thing to do
My favourite cuisine is: Mexican
I am obsessed with: skincare at the moment!
I really like that I: am very decisive 
My favourite item of clothing is: my Adidas Gazelles 
If I was treating myself I would buy: something from Lush, or really nice chocolate 
I find it hard to: motivate myself to exercise. It helps my condition but not in the short-term and so it’s difficult to make myself do it

Friday 5 January 2018

Jan - June 2018: What I'm Excited For

I thought it would be cool to highlight some of the books, TV shows and films I'm excited to see released in the first half of the year. I've limited myself to 5 of each otherwise we'd all be here forever!


The Belles - Dhonielle Clayton (Feb)
A Spoonful of Murder - Robin Stevens (Feb)
Children of Blood and Bone - Tomi Adeyemi (March)
The Brightsiders - Jen Wilde (May)
All Of This Is True - Lygia Day Penaflor (May)
Bonus: I Was Born For  This - Alice Oseman (TBC)

Honestly I could easily list double the amount of books I have here, but I didn't want this post to be *too* long! These all sound incredible and I cannot wait for them. The Belles has been getting loads of positive early reviews and just sounds incredible! I really cannot wait for my beloved Daisy and Hazel to be back in A Spoonful of Murder - I've missed them! Children of Blood and Bone got tonnes of buzz at acquisition and sounds like an amazing fantasy read. I loved Jen's first book Queens of Geek so I'm excited for her upcoming The Brightsiders and then All Of This Is True sounds so meta and weird and cool and just YES. Alice Oseman has confirmed her latest book should be out spring 2018 and it just sounds incredible. I have loved both of her previous books so cannot wait for this one.

TV Shows

Dancing On Ice (Jan)
Riverdale 2b (Jan)
RuPaul's Drag Race All Stars 3 (Jan)
Black Lightning (Jan)
Jessica Jones (March)

My favourite thing about Jan is the return of many TV shows! You may have noticed these are a combination of comic book adaptations and reality TV - two of my fave categories! Dancing On Ice has been gone FOREVER so I am very excited to see it return! Drag Race is one of my fave TV shows EVER and the last season of All Stars was excellent so I have high hopes for this one. Then ofc we have the return of Riverdale which was one of my fave shows of 2017, the return of Jessica Jones which I feel like I have been waiting forever for, and the start of Black Lightning which features a black retired superhero vigilante and sounds so good!


Lady Bird
Black Panther
Tomb Raider
Love, Simon
Ocean's Eight

Lady Bird is a film I've heard so much about from people in the states so I'm really excited that we'll be getting it in the UK this year. I went for more of a mix of films than just featuring every Marvel release between now and the end of June. Black Panther is the Marvel film I'm most looking forward to this year; it looks so good and I'm so excited to see a more diverse cast on screen. I do kinda like the original Tomb Raider films despite them being kinda terrible, and I'm hoping this outing can improve on them. I adore Alicia Vikander and don't think she's turned in a bad performance. Love, Simon is an adaptation of a YA book I love: Simon vs the Homosapiens Agenda and I'm SO SO excited to see a film about a GAY TEENAGER in the cinema! Ocean's Eight cannot be bad given that outstanding female cast. I can't wait.

What are you excited for this year?

Tuesday 2 January 2018

2018: Small Goals and Stretch Goals

I've never actually been one to make too many resolutions, but at the moment with being off work my  life feels a little unstructured and out of control. As a result I've come up with a series of small goals that I want to achieve while I'm off work but also to carry through to my return. I've also come up with a series of stretch goals I'd love to achieve. 

Small goals

Out of bed and dressed everyday: I am really bad for not doing this. On a bad pain/fatigue day I often stay in bed all day, despite the fact that when I DO get out of bed I actually feel better. So I want to do this daily even if it's only for a little bit.

Do my physio everyday: I got really good at this then the festive period got in the way. So I want to bring this back in. My physio has 3 parts: stretching exercises, pilates exercises and weights. The weights I added in myself because my shoulders are my worst joint and the muscles around them often get tense and sore. I notice an immediate effect when I do this so I really need to keep it up.

Skincare routine everyday: I have pretty much got my skincare routine now but when I feel ill it's one of the first things to fall by the wayside which is silly given that it takes literally a few minutes and really makes me feel better.

Maintain changing bedding fortnightly: I brought this in in 2017 and stuck to it. I was terrible for getting a bit lazy when it came to bedding changes, but regular ones make me feel much better, especially given how much time I spend in bed. 

Practice French daily: I really want to learn French and I've been practicing with 2 apps: Duolingo and Memrise. I want to do this daily in 2018. 

Stretch goals

Swim a mile: I was doing really well with swimming, I got up to being able to swim 1KM but I haven't been for a long time. Not only do I want to get back to swimming, I want to build my lengths up so I can swim a mile. 

Go to the cinema 30 times: I LOVE the cinema and I have a Cineworld card, but with being so ill this year I haven't been as much. In 2016 I went to the cinema 40 times but in 2017 I only managed 20. So I'm splitting the difference and hoping I can stretch to 30 times in 2018. I'm not setting a monthly goal for this as it depends on what films are out/how I'm feeling.

Give blood: I've been meaning to do this for AGES. I had a tattoo in November so I will have to wait a while but I'm determined to finally do this in 2018. 

Learn 5 new recipes: I find cooking hard. All the chopping and standing and lifting/carrying of heavy things. I can usually only do it with an assistant to help. My repertoire of dishes is embarrassingly small so I'd like to increase this by 5 in 2018. 

Read 70 books: I managed 50 in 2017, which is way behind the 100 I used to get. So I'm hoping in 2018 I can increase this to 70. 

Do you have any goals for 2018? Big or small, let me know!