My Rheumatologist and I

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I have tried a couple of times to sit down and write my end of the month reviews, but each time I’ve hit a wall. Quite simply, I haven’t been thinking much about the goals I set myself at the beginning of the year – I haven’t had time. For the past year now, I’ve been going back and forth with my doctor about some long-term chronic fatigue and pain I’ve been experiencing, and in the past few months, I’ve finally been getting seen, while the symptoms have still been worsening.

Honestly, this has been a part of my life for at least eleven years now, but at the beginning of Summer 2017, it started to feel a bit different. Obviously, my depression and anxiety cause an amount of fatigue, and many years ago I was diagnosed with ‘borderline’ Hypermobility Syndrome after chronic pain in my hips. It took three trips to my GP before they would even begin to consider other causes, referring me to see a rheumatologist, and even then it was a fight. But at least they did finally refer me.

Thanks to Royal Mail’s sterling service, I never actually received my referral letter. It was only when I received a reminder to make my rheumatology appointment that I even knew my doctor had done what they said they would. So when I first saw my rheumatologist in July, I had no idea what the doctor had finally referred me for. It turned out mentioning my dad’s Ankylosing Spondylitis (inflammatory arthritis that primarily affects the lower back) had been what convinced my doctor to refer me, and now they were looking for the same thing in me.

It was something that I had considered before. When my dad was first diagnosed many years ago, I was having lower back pain and headed to the GP then concerned. They sent me for an X-Ray, which came back clear, so just sent me for three sessions of physiotherapy. But they also did a blood test, which confirmed I do carry the HLA-B27 antigen, which is seen in 90% of Ankylosing Spondylitis (AS) sufferers, and other inflammatory diseases. Now, it’s not guaranteed if you have the genes that you’ll get AS, but they certainly think it increases your chances. But I’d been told I was clear, so I went to the doctor thinking ‘It won’t be that!’

‘It won’t be that’ echoed through my head as the doctor looked at all my joints, took some measurements, asked the usual questions. It felt like it was all going pretty well really, except for the crunching in my right knee (the fact it does that all the time doesn’t make it normal, apparently). Then came the time to measure my mobility. I passed chest expansion with flying colours (AS can also affect your ribs, impacting your ability to breathe), and then came the back movements.

Now, thanks to the hypermobile joints I had when I was younger, I could touch my toes pretty easily for quite some time. I could even briefly lay my hands flat on the ground when I bent forward. So I really tried to show off for this doctor. Except I couldn’t. I haven’t been able to touch the floor without bending my knees for a while now. I stretched as far as I could, but the pain in my lower back stopped me from getting very far. Still, the result, I was told, was borderline normal. All good. All that was left was bending to the sides. Easy!

I don’t know if you’ve ever been at a doctor’s appointment where the doctor has turned to you and said ‘Well, that’s not good’, so I’ll let you know how it feels – Not great.

I got redressed and sat back down, waiting for some kind of signal that would hint about what he was writing. After waiting for what felt like forever, he explained the next steps.

Sixteen-week pathway to arthritis diagnosis. Blood tests, X-Ray, MRI Scan, Ultrasound, and then back in four months.

It’s been a long few months since then. I’m still waiting for my final appointment, but results have started trickling through. Letters and referral forms with mention of ‘clinical evidence of osteoarthritis and AS’, but also no evidence in any scans. This limbo is the worst. ‘Healthy’ people underestimate the importance of a diagnosis. When I had my ultrasound done on my hands, looking for damage in my joints, the gentleman conducting the scan turned to me all happy and said ‘Well, good news! I can’t see anything wrong’. I left the room holding back tears because no visible evidence = less difficult to diagnose.

So at the moment, I’m still in the limbo, waiting for my next appointment, hoping they find something and can actually help me. In the meantime, I’ve been accepting this isn’t something that will be easily fixed, and considering what changes I’m going to need to make to stop wearing myself out (for example, the 5KM inflatable fun run I did last weekend was not a good idea, and I’m still suffering physically for that). It’s going to take a little while to work through it, especially with an amount of uncertainty around it all, but I’m sure I can do it. I’m going to be opening up about my journey as it continues, so be sure to come back soon and see how I’m doing.

And for anyone else going through something similar, know that you’re not alone.

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How I Managed to Spend No Money for Seven Days

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As I’m preparing to go into July’s no-spend week, I thought it might be interesting to some people to get a little insight into how I make it work! These weeks, as well as stretching my money a little further, have really opened my eyes about my relationship with money (namely the number of times a week I think about spending it on things I really don’t need).

So, if you’d like to get some similar insights or make similar savings, but don’t know where to start, keep on reading.

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18 in 2018 June Review

July is here, and we are in the middle of The Worst Heatwave here in the UK. I am beyond fed up with it at this point. But I’m trying to push that all aside and get some more progress towards my goals under my belt!
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Full disclosure: This post contains some affiliate links. When you make a purchase on Amazon after using the links in this post, Roxy and I get a little kickback, helping us keep the website running

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18 in 2018 February – April Review

I blinked, and suddenly both February and March have been and gone, and it’s nearly the end of April! Things have been insanely busy over here, with lots going on at work and at home. I’m now in the middle of a week off work and just looking around like ‘when did all this happen?’. I know that I haven’t made as much progress on my goals as I would like, but there’s still time to turn this year around. Read more about what I have managed to do below!
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A Story and a Grovel

The past year hasn’t been the easiest for my family. In the winter of 2016, I was on the phone with my parents, when they first mentioned something might be wrong with my sister Jessie’s eyesight. My phone signal was bad, and I was on a break at work, so I didn’t really get the full message. I guessed she probably just needed glasses – most of us in my family do. 

It was only a few weeks later when I found out she had a referral to Moorfields Eye Hospital, that I really realised the severity of what was happening. By that time, her identical twin had also been to the optician’s and they had found similar symptoms with her – an unusual area on the back of her eye. It was the first of many appointments at Moorfields, one of the leading providers of eye health services in the UK. Each time, there was a little bit of hope that maybe it might not be that bad after all.  

I remember the day of their final appointment pretty well. This was the one where we would be getting a definitive diagnosis, as well as an idea of how severe it would be. I was meant to be in lectures for my Master’s, but I didn’t feel I could sit through it without panicking. As a distraction, I ended up heading to the cinema to watch ‘Beauty and the Beast’ – but when I left and headed to meet up with them post-appointment, the dread had set in again. 

When I got to their hotel, they gave me the news. They were both given a diagnosis of Stargardt’s Disease – something that we had suspected for some time. 

What is Stargardt’s Disease? 

Stargardt’s Disease is a recessive, genetic disorder, that causes fat to collect on the back of your eye – specifically, the central part of your retina, called the macula. It’s the most common form of inherited, juvenile macular degeneration, and symptoms commonly appear in childhood or during your teenage years but can go unnoticed until later in life. In the beginning, central vision becomes blurry and loses colour, before losing sight in that area completely. It is rare for those with Stargardt’s to become completely blind, but many are left with only peripheral vision. It typically starts slowly, before becoming more rapid and then tapering off in later years. 

 

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This is a picture of the back of Amy’s eye – the dark spot in the middle is a sign of macular degeneration.

 

The news broke our hearts, but obviously, the primary impact was felt by Amy and Jessica. They are both currently in their final year of university, and both previously took time out of their degrees because of poor mental health. The news came just as Amy was returning to her second year at Cambridge University to study Veterinary Science. Jessie was starting her year out from the University of Exeter, where she is studying Animal Behaviour. Both of their plans have had to drastically change following the news – Amy will not be able to practice as a vet (unlike doctors, vets must be able to conduct surgery, which you cannot do if you are visually impaired.) Jessie has always wanted to work with big cats but now has to decide what she can do with impaired vision. She recently had the opportunity to go to Africa with her university, which we made sure she could undertake – because we didn’t know if she’d be able to see them again. 

Doing things because we don’t know if Amy and Jessie will be able to see them again is a common thing at the moment. And not something we ever thought we would have to consider in our family. At the end of the day, we are glad that we are in a position as a family that we can make these things happen – we know some other people aren’t fortunate enough to have these opportunities. We’re a strong family unit, that can support them, and each other, through the uncertainty ahead. 

We will be taking part, as a family, in ‘Eye to Eye’, a sponsored walk raising money for the Moorfields Eye Charity. They support many individuals and families going through a similar experience, as well as funding new research that aims to make blindness a thing of the past. We are proud that as a family we can participate in an event like this to not only raise money for a worthy cause but raise awareness of sight problems like Stargardt’s.  

I understand that money is tight right now – no one has as much of it as they would like! But even a couple of pounds thrown in our direction can make a difference towards our goal of £600. So please, if you can, make a donation. We would really appreciate it – and it would make walking for nearly four hours (with my family) seem worth it! 

You can make a donation by clicking here. 

January 2018 Goals Review

Full disclosure: This post contains an affiliate link to Gousto, a recipe box service here in the UK. When you sign up through this link, you get two boxes for half price – and I get a little kickback! 

Can you believe January is over already? The only silver lining is that it’s nearly February – which means my birthday, and I’m off to see to see Hamilton on the West End! But before that, let’s have a look at how I’ve been getting on with my goals so far!

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Catching Up with My 2017 Goals

Where has 2017 gone? I can’t believe it’s December already! As everyone gears up for the holidays, I’m looking back on my 2017 goals. So, let’s dive in!

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1. Finish my Master’s Degree

This one was always a dead cert unless something went drastically wrong. There were a few weeks in August when I began to think about deferring my final essay until 2019 (this has been the year of continuous fatigue) but I manage to stick with it and get everything in. This was despite that fact that by that time I was basically working full-time! (More on that later). I knew that I probably hadn’t done enough at that point to get a distinction, but was happy with what I had achieved. I finally got my results back a couple of weeks ago, and not only passed by got a mark high enough for a merit – except my university doesn’t do them! Boo! Regardless, I am proud to have gone from a lower-second Bachelor’s degree to a Master’s degree, whilst also working crazy hours. I will be officially graduating on the 11th, and have basically been told I have to go because my family wants to come! I don’t particularly feel the need to spend a whole afternoon socialising and waiting for my name to be called, but there we are!

2. Fit in More Crafting

This goal has been a little bit up and down! I have added ten minutes knitting to my daily to-do list (although don’t really time it, I just finish one row of whatever I’m working on!). This has definitely helped, as it’s one of the easiest things I set myself to do. But, I’m still not managing to do it every single day, and non-knitting crafts have really fallen by the wayside. I’d love to be able to do some more papercraft and cross stitch, so think when my current knitting project is done I’ll have to mix it up again!

3. Develop My Career

This one has been a little bit of a rollercoaster this year! Way back in January, I was working as a stage manager for a brilliant new show. This was a fantastic opportunity to return to my first love, theatre. Shortly afterwards, I stage managed another show, this time a devised ‘dramatised tour’. Both experiences were great, I loved them – but they were so stressful. My anxiety and depression were all over the place, making it difficult to get anything done that wasn’t work. Not what you need when you’re also trying to finish a Master’s! I began to see that even though I loved the career, it wasn’t working for me. On top of my mental health, I’ve had more physical health problems during the year that, as of yet, the doctors have refused to diagnose. A job that requires lots of running around and late nights just isn’t healthy for me. I think I knew this four years ago when I first left, but because I had never loved anything the same way, I didn’t know where to turn.

I got lucky though. On a whim, back in February, I applied to do a marketing administration work placement for an arts organisation. I figured it would be good experience whatever I ended up doing. Well, soon after that placement started, their Student Recruiter left, and I was offered the position until that contract ended. Then, their Marketing Assistant left, and I was asked if I wanted to take on that role for an additional two days a week. Meanwhile, my previous experience working with adults with learning disabilities and driving minibuses meant I was asked if I would like to work with our after school disability programme, with the occasional Saturdays. ‘Why not?’ I said, suddenly working five and sometimes six days a week. By this point, I’d fallen in love with the organisation, and had found a new passion in marketing – something I never thought I would enjoy! But all of this was only until the end of 2017, when they were recruiting a full-time Marketing and Communications Officer.

Of course, I applied for the full-time role, really not expecting to get it but not wanting to let go of the job I’d fallen in love with. Much to my surprise, I found out last week that my application was successful! Plus, my manager wants me to continue my work with the disabilities programme, allowing me to be flexible with my hours to make that happen. I really couldn’t be happier, and am still riding on the high from the news!

Safe to say, I have achieved this goal for 2017!

4. Make Some Friends

This was always going to be a hard one. I did start off the year really trying, but as socialising isn’t always something I enjoy, it’s pretty easy to talk myself out of it. Now I’m starting to get a more regular timetable, I will continue to try to do this. I have been talking to people at work, and going out on our work socials. I just always struggle to trust people! But all I can do is keep working on it. I have been trying to at least maintain current friendships, which I guess is something?

This will have to be a goal that comes with me into 2018!

2017 Achievements

  1. I passed my Master’s degree, and didn’t just scrape through like I expected!
  2. I applied for and gained a full-time job at an organisation that I love.
  3. I’ve nearly finished another large craft project – this time, crochet, which I’m really not good at but determined to try!

Tune back in at the end of the year, when I’ll be outlining my goals for 2018 – and let me know if you have any suggestions or goals of your own!

2017 Achievements and Goals Revisited

 

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We’re nearly a quarter of the way through 2017, so now seems as good a time as any to review the goals I set myself for this year. This is also a chance to share my 2017 Achievements so far with you all, and for you to let me know how you’re getting on with you own in the comments  below.

1. Finish My Master’s Degree

Back in January, I submitted my first essays for my Master’s degree. I’m not going to lie, it was terrifying. I barely scrapped through my Undergraduate degree, so have been going through some serious imposter syndrome since I got accepted onto the course.

All of this taken into consideration, imagine my surprise when I more than passed my first two modules. My university doesn’t do merit grades for Master’s degrees, but if they did I would be well on my way to getting one. I honestly couldn’t be happier! I’m holding onto my achievements so far as I head into the Easter break – the time to get my next two assessments done and dusted. A distinction isn’t completely out of the question if I score well on these, so I’m going to be throwing myself into the work to make it the best that it can be!

2. Fit in More Crafting

I’ve been a little up and down with this goal. Some weeks I’ve been doing loads (generally when I have something to procrastinate from),and others I haven’t gone near anything craft related. I’m slowly improving though, remembering to make time for myself. I’ve also been reminded that I always feel better when my downtime still seems productive. With this in mind, I’ve taken to adding craft projects to my to do list, so that I feel like I’m getting stuff done whilst still making time for myself to relax. I currently have a couple of projects on the go, which I hope to share with you all soon. I’ve also just finished a huge cross stitch project that I’ve been working on for over a year. I’m hoping to post about it soon – it just needs to get to it’s recipient first!

3. Develop My Career

I started the year by returning to a career I thought I had left behind me long ago. In hindsight, adding a full time job on top of full time studies probably wasn’t the wisest of choices. Regardless of this, it went really well, and I began to question why I had ever left it in the first place.

So, since then I have been seeking out stage management work again. It’s been a little difficult, as I’m restricted by my contact hours at university, but I’ve been making a couple of applications a month. I even have a job interview this week for a perfect sounding job that would combine my stage management experience with my growing applied theatre knowledge. So, fingers crossed for that.

In the meantime, I’ve been continuing with my work placements for university. On top of my pre-existing one from last term, I have a new placement each Wednesday. This one focuses on Marketing and Administration; Two areas I have very little experience in but which will be essential in my future involving an amount of freelance work. On top of my work placement, I’ve started doing some paid reception work with them, which should help make ends meet!

I’m still not sure where all this is leading me. I suspect though that I might be heading towards a series of odd jobs to make ends meet, interspersed with the work I want to do. When I work out what that is, exactly.

4. Make New Friends

I kind of hate myself for putting this on my list of goals for the year. It’s not that I don’t want friends – it wouldn’t be on my list if that was the case. It’s just so difficult! I hate having to put myself out there. Years of social anxiety and trust issues have built a massive wall I have to climb over whenever anything remotely friendship like comes my way.

That being said, I have been making baby steps in the right direction (mainly with help from my lovely ‘Mental Health Specialist Mentor,’ courtesy of the university.) I met up with an old work colleague. I’ve been pushing myself to join more conversations between classes at university. Most scarily of all (for me, at least) I went along to a London Craft Club meetup earlier in the month. The bonus of this is that there was very little pressure to socialise, as everyone was engaged in their own crafts. Plus, it helped me towards my second goal of making more time for my crafts. I haven’t managed to go back since then, but I’m hoping I will some time soon.

So basically, no huge leaps of progress towards any of my goals as of yet, but a couple of little achievements worth mentioning. I’ve listed them below, mainly for personal bragging reasons. It also helps boost my mood when I’m feeling rubbish to remember everything I’ve achieved. Don’t forget to add your own achievements and goals in the comments!

 

2017 Achievements

  1. I have received good marks for my Master’s degree assessments so far.
  2. I worked on a show as a Stage Manager for the first time in three years. The show got great reviews, and I received high praise for my part on the show.
  3. Pushing myself to the edges of my comfort zone, I went to a craft group meetup.
  4. I completed a super secret craft project that I’ve been working on for over a year. Hopefully you’ll hear more about this really soon!