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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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!

Adobe Spark (1)

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!

Hello 2017!

I’ve never been a fan of New Years resolutions – If you want to make a change, why wait for a new year to do that? But I do like setting myself goals, and the new year does make a good landmark from which to measure my progress. So, here are my 2017 Goals!

Adobe Spark (1)

1. Finish my Master’s Degree. 

All things going well, this should be a dead cert. What I’d really like is to graduate with a distinction, but we shall see how that goes! But I’m proud of myself for even working for my Master’s, and know that a distinction won’t be worth it if it comes at the cost of my mental health, so will continue to just do my best without sending myself crazy!

2. Fit in more crafting. 

Whilst it is something I love, crafting is also the first thing pushed to the wayside when things get tough. But as I know from many rounds of therapy, reading and personal experience, times of high stress are precisely when I need to make time for pleasure activities. What’s the point of living a life with just work? I did that for two years, and look where it go me. So, at least one hour of crafts, please and thank you.

3. Develop my career. 

A vague goal, but since I still don’t know at nearly 25 exactly what I want to do (who does?), I can’t get much more specific right now. I want to continue to look at theatre and mental health, but I want to keep stage managing too. But, part of me is always tempted to just find a job at a cattery in the countryside. So, we’ll see where I am at the end of 2017 – just so long as I’m not standing still. (And, you know, have some money. Roxy still isn’t contributing to the rent bill.)

4. Make some friends. 

It’s not that I don’t have any friends. I have some great friends. But I really don’t socialise often. Part of that is because of the crippling social anxiety, but at the end of the day, that’s not going to improve by  sitting in my flat alone. And living in a capital city really doesn’t give me any excuses to not make more friends – there are hundreds of clubs and meet up groups in the area, I just need to make the step. So, by the end of the year I want to be doing at least one social thing a week. Maybe. That sounds very scary.

And that’s all I have right now, although I’m sure I will continue to develop my goals as the year chugs along. How about you? Any resolutions or goals? Share them with me and we can be accountability buddies!

Think Resilient

Last year, a survey conducted by Girlguiding revealed that 46% of girls between the ages of 17 and 21 have personally needed help with their own mental health. In response to this, Peer Educators such as myself voted that Mental Health and Resilience should be our next resource topic. (For those who don’t know, a Peer Educator is a member of Girlguiding between the ages of 14 and 25, who has had training in running sessions on social issues such as body image, sex and relationships and youth health.)

As mental health is a subject very close to my heart, I applied to be a part of the Task and Finish group, developing the resource and was very fortunate to have been selected. Following a lf and the rest of the team have been reviewing the resource, making it the best it can be. After a year of development, the resource was finally announced to the public last Tuesday. (Possibly even more exciting, a quote I provided about the resource was picked to go in the press release, so I now have a little collection of news reports I’m quoted in!)

Think Resilient
“I know low mental wellbeing is a major issue affecting the daily lives and ambitions of lots of young women my age. Many girls feel there is a stigma attached to talking openly about their mental wellbeing. I hope this resource will help to change that, giving girls the positive and practical solutions they need to build resilience and a safe space to share what’s on their mind.”

As I said in the quote above, I’m really hoping that this resource is going to have an impact on young women. My own mental health problems started to surface while I was a Guide, and access to the activities in this resource would have meant I was a lot better prepared to deal with what was ahead. If I can help just one girl who is in the position I was in, I’ve achieved my goal!

On the 2nd April, I’ll be off to Sheffield with my sister to be trained in the resource, and I cannot wait to finally hold it in my own hands. I’ll be sure to report back on the final product after that!