Becky: Allergies and other illness Living with a Disability

A journey with my joints

It’s been ages since I wrote a blog. It’s been a turbulent year, hasn’t it?! Anyway, I’ll try to get straight back at it. This time, I’m writing about something that’s been going on with me, encouraged by Dan!

In August last year, I was diagnosed with an autoimmune condition. The fact it was during a global pandemic intensified the anxiety it caused. Despite a difficult year, due to shielding (but both getting COVID anyway) and a few other bumps, we thankfully managed to finish the year on a real high by buying our first home together. So, don’t worry – this blog isn’t going to be all downbeat! 

The journey with my joints began when I was in my early teens, though. I started getting pain and clicking in my hips, and they, along with my ankles and knees, were often ‘giving way’. The pain spread up to my back and I went to my GP; I was given a course of anti-inflammatories for ‘illiotibial band syndrome’ and told it was likely due to my body growing and changing shape. I was told I also have hypermobility, which can cause pain. The hypermobility also causes issues with my shoulder, including painful tendonitis, bursitis, clicking and crunching.

Anyway, the medication didn’t help, so I was sent for a blood test and X-rays. The result was that I had hip dysplasia (which hadn’t been picked up when I was younger) and I was referred for physiotherapy. Despite lots of stretches, strengthening exercises, ultrasound therapy and acupuncture, there was no real improvement. Physio discharged me back to the GP. Effectively, what they said was ‘You’re bost, we give up!’.  

My first anaesthetic and another referral…

At this point, I was about sixteen and was sent to see an orthopaedic consultant. I was booked in for a general anaesthetic to have my hip joints and surrounding muscles injected with steroids (X-ray guided). My memory of this is a little hazy, but my Mum was highly amused when I returned to the ward from theatre, as high as a kite. Here ensued a lot of giggling, me repeatedly asking if the surgeon had drawn a moustache on my face, followed by me urgently requesting some chocolate. Pretty standard stuff I imagine?! 

These injections provided some mild relief, so they repeated them again after a while. Unfortunately, my second anaesthetic recovery wasn’t as smooth. Far from the blissful giggles and post-anaesthetic chocolate binge, this time my blood pressure dropped and I felt as rough as a dog’s ar*e during recovery. Not only that, but the injections didn’t seem to help at all either. Eventually, I was referred to a specialist at the Royal Orthopaedic Hospital. 

Things here started with an MRI scan, which showed some other issues as well as the dysplasia: greater trochanteric bursitis and tibial torsion. Basically, there are twists in my shin bones and my hips don’t sit properly in the sockets. In turn, this causes lots of inflammation in and around the hip joints, and muscles that don’t sit where they should properly, causing them to ‘ping’ and ‘snap’ from one side of the hip to the other. The pain and tightness from this spreads up and down my legs and into my knees too.

The surgery… too high risk!

To fix this, the surgery would involve breaking both of my shins and both of my thigh bones, repositioning them and pinning/resetting them. I was told this is high risk surgery with a very long recovery, which should only be a last resort. No thanks then. Another option was surgery to lengthen the muscles in my legs, but this is also very risky. So next was more injections, including Botox to relax the muscles (cue awful joke by my Mum about saving some for her face), more physio, more pain relief and learning to live with it for now. As a teenager who wanted to do nothing but ride my horse all the time, and be out with my friends, there was a lot of frustration as I tried to cope with the pain and it’s restrictions on bad days.

With my horse, Mannie.

Anyway, when I left school, I decided to go straight into training to become a veterinary nurse. I’m cutting a long story short here – I qualified, worked in practice for a few years, and then ended up leaving the profession. A very physical job was proving too much for my pain, and another condition I have called Postural Orthostatic Tachycardia Syndrome, AKA, POTS, (but that’s a story for another day…!). 

Uh oh, new pain?

So, fast forward a few years again, to 2019. I was settled in a less physically-demanding job, giving me more time and energy for my horses and my fantastic fiancé, Dan. I’m on medication for POTS and prescription painkillers for my hips/knees/back, so everything was being managed and I was balancing things pretty well. Until one day, an area of my spine became extremely painful. The pain starting spreading into the muscles around the area but I thought I must’ve banged it or pulled something. After about a week of worsening pain, I went to the GP. They couldn’t really decide what it was, so sent me for bloods which showed inflammation and so they gave me some meds. They assumed it was linked to my hypermobility and hips, but I starting to be able tell it was a different kind of pain.

After about a month, it slowly started to settle, but they sent me for an MRI anyway. The scan showed scoliosis (not really surprising given how wonky my legs are!), a small mass (apparently nothing to worry about), but nothing serious and no injury or permanent damage. Over the next few months, with the pain peaking and troughing, the GP was wondering who to refer me to next!

A month or so later, I noticed one of my toes was really painful, swollen and red – strange. Then, followed by one of my fingers and wrist, which were really stiff as well as painful. Then, my right knee ballooned and I could barely move it or walk on it. Being totally honest, I just thought ‘What fresh hell is this?!’. I went to see a different GP, who immediately referred me to a rheumatologist and sent me for more blood tests. The blood tests showed an increase in antibodies, which are linked to the immune system.

A diagnosis

When I saw the rheumatologists, they fairly quickly diagnosed me with Psoriatic Arthritis, which is an autoimmune condition. Most people associate arthritis with older people and ‘wear and tear’ but there are a few types of arthritis, including Psoriatic, which are caused by the immune system mistakenly attacking healthy parts of the body – mainly the joints and tendons/ligaments. This causes pain, swelling and stiffness of the joints and can also cause problems with the eyes, heart and digestive system. The condition also causes fatigue, which has been a big symptom for me.

I felt a bit overwhelmed when the rheumatologist and nurse specialist handed me these booklets. But, they’re such an amazing and supportive team, including the physios and occupational therapists!

Unfortunately, psoriatic arthritis is a progressive condition with no cure. It’s really important to get onto treatment as early as possible to slow the condition down, reduce the amount of inflammation caused, and try to slow and reduce damage to the joints. Treatments include Disease Modifying Anti Rheumatic Drugs (DMARDs) or Biological Drugs. Both suppress your immune system, which is where the problem has come in for me… I’ve had chronic sinusitis for the past year, and recently I’ve had a very stubborn infection. After over a month (3 courses) of different antibiotics, it’s still lingering and making me feel rough, so we can’t risk weakening my immune system with these drugs, until the infection has gone. I’m waiting to see ENT, but the backlog from COVID has left very long waiting times…

In the meantime…

In the meantime, I’m focusing on managing the pain and flare ups, which for someone who hates sitting and resting is quite difficult! But Dan and I have our new home, which we absolutely love and are slowly turning it into our accessible dream. I am so lucky to have found my best friend and soulmate (eewww) in him – we may both have a few broken parts, but we don’t let that stop us enjoying ourselves and keep pushing! I have my dog and horses who also keep me going mentally, even on the days where I am desperate to ride but can only manage to muck out or cuddle and groom them – they always have been, and always will be my world! My Mum makes it possible for us to keep the horses, by doing all the physical work on the days that I can’t – I’m eternally grateful for that, as well as all the other help and support she gives Dan and I.

Moving day! Us outside our new home.

Although the pain sometimes wears me down, and I get frustrated or upset, I’m always trying to counteract it! Especially because stress can trigger a flare up, I try not to worry! Occasionally, when in a flare up, I’ll admit that it’s easy to focus on what I can’t do, or spend time worrying about what people think or the future, or feeling a bit isolated… but then I laugh with Dan, cuddle the dog and horses and I start to feel less overwhelmed! I’m not looking forward to the possible side effects of these drugs, but I am very much looking forward to hopefully being in less pain, and not worrying about my joints being damaged so quickly.

I just want to finish this by saying that when we got together, people worried about the effects Dan’s disability would have on me, but they never considered what would happen if I ended up with a progressive and sometimes disabling condition myself. Thankfully, there’s still no need to worry, as I couldn’t ask for a more supportive fiancé. Plus, we’re both as stubborn as a mule, which helps with us being determined to crack on, keep having fun and making the most of the all positives, which we’re lucky enough to have!

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