My Rheumatologist and I

Rhuma copy

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.


Mabel: My Stupid Dog

Saying goodbye to the best stupid dog

It’s quite obvious that I am a cat person. If you didn’t know that already, then where have you been? I do have a special place in my heart for all the dogs we have had through the years though. One stupid dog in particular. But more on her later.

Offie (full name Othello), was my first dog. It took an exceptionally long time to realise that no, he hadn’t gone to live in the attic (a place four-year-old me wasn’t allowed to go). My parents had made the heartbreaking but wise decision that an ageing dog in the same house as four children under four wasn’t the best living situation.

It was a few years before we got Dizzy (full name Desdemona), an amazing Nova Scotia Duck Tolling Retriever. I have an image in my head of Dizzy being quite a serious dog, but I know that in reality she probably wasn’t. She was certainly pretty well skilled with the ‘Toller scream’ (see – and hear – below). When she was a few years old, we decided to get a second dog, Mabel (full name Mabel.)

Mabel: The Best Dog Ever

I remember the day we went to get Mabel. It was quite a drive from our home, but I was so excited. It was unfortunate that when we got there we discussed she’d had a bit of a dodgy tummy, but because of the long drive, we had to take her home that day.

The smell of doggy diarrhoea is one I can remember vividly to this day. It didn’t help that my and my sister refused to put her in the boot because we wanted to play with the cute puppy.

Mabel seemed to stay as a puppy for most of her life, both in appearance and behaviour. When Dizzy was still around, Mabel was always beta of their pack of two, so never really needed to grow up. After Dizzy went over the Rainbow Bridge, we got Hector and Cassie. Mabel seemed happy to bow down to her feline overlords rather than acting like an adult dog. Even now, she has a cheeky smile as she climbs onto the sofa next to you, and she gets overexcited about any little thing.

She is getting older though. It’s what surprises me most when I go to my parent’s because I’m not there to see the gradual decline like when I lived there. When I visited last weekend, even sitting up made her pant. She wasn’t eating her food (although she was eating plenty of ice creams when offered) and would look at me in confusion when I tried to send her into the garden to go to the bathroom before bed. Whilst we’ve joked for many years that she was a dead dog walking, it became apparent that the date was fast approaching.

Saying Goodbye

When I left my parent’s last Monday, I made my last goodbye to Mabel. I was half expecting her to still be dragging herself around the house when I return later in the year.

It’s a weird thing with pets, isn’t it? That sometimes we know they’re going to die before it happens. It’s written into the calendar as something that will take place at a certain time.

My mum phoned me on Thursday to let me know the veterinary appointments have been made. One on Wednesday, for a checkup. One on Friday for the procedure. Part of me hopes that the vet may still turn around and say ‘Don’t be silly, she’s got years left in her.’ But it’s unlikely.

I know it’s not a decision that has been lightly by my family. It’s a topic we’ve come back to again and again. It is a kindness, to have her put down. But it’s still heartbreaking.

Owner lying on bed next to her red and white pet dog

Mabel has been around for half of my life. I don’t really remember a time before her. She’d been a constant companion – one of the best – and she’ll be greatly missed. Here’s hoping that my parent’s give her a good send off this week – with lots of ice cream.

A Good Send-Off

I’m going to be posting my favourite pictures of me and Mabel over on my Instagram throughout the week, so please check it out.

Love you Mabel, my stupid dog. Cassie, Moët, Chandon and Dizzy will meet you on the other side of the bridge.

Update: Good news! When Mabel visited the vets, they said they felt that there was one last thing they could try before putting her down. Something nmust be working, as at time of updating this post (1st Dec.) she is still with us! Fingers crossed we get to spend one last Christmas together.