Guest post: It Took A Chronic Diagnosis For Me To Slow Down

My friend, Harriet, has written a beautifully candid piece about a recent chronic health diagnosis and how this has made her reassess and consider directing some self-kindness and care back on to herself. It seems as though the conversation about the realities of living with a chronic condition is getting louder, but I think that continuing to share experiences and talk about what has helped some, may in turn help others out. 

I would like to mention here, though, that you don’t need a chronic health diagnosis or burn-out for you to check in with your self-care practices, and ensure that you are looking after your fundamental needs. For more information on checking in with your self-care practices, check out the series on self care that I contributed to on the London Centre for Intuitive Eating insta. 

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I have always been someone who equated being busy with being a sign of success. In fact, a close friend recently pulled me aside and told me that if I didn’t slow down, I would crash and burn. And she was right.

Unbeknown to me, for several years, I have been living with Joint Hypermobility Syndrome. Unfortunately, Joint Hypermobility Syndrome is a difficult condition to diagnose and only one in 20 people with the condition are given the correct diagnosis. This new diagnosis came on top of the fact that I had spinal fusion surgery for scoliosis six years ago. I recovered very well from the scoliosis surgery, however more recently, my poor body has been giving me warning signs that things weren’t quite right.

Joint Hypermobility Syndrome is a connective tissue disorder where a person has an unusually large range of movement in their joints. It is typically characterised by pain and fatigue; however, it can manifest in many ways such as IBS, dizziness and poor balance or co-ordination.

I always assumed the joint pain, dizziness and severe fatigue that I have experienced were after effects of my spinal surgery. People close to me were baffled by the ‘buzz and burn’ cycle that I would go through. I would have a couple of days of feeling fine and be ‘buzzing’. On these days, I would completely overdo it in terms of activity. This would be followed by a flare up, which I can only describe as a feeling of disproportionate exhaustion and pain resulting in several days in bed.

I started to get concerned when I was unable to hold a pen due the flexibility in my finger joints back in April. As an avid writer, one of the biggest frustrations is that I am no longer able to write by hand. These were all symptoms of an entirely different condition – Joint Hypermobility Syndrome. My body was crying out for some attention, rest and self-compassion.

What did I do? I pushed through and ignored these signals from my body. I trained for marathons, I stressed myself out running a blog, I wore myself to the ground striving for a first-class degree, and I soldiered through an exhausting internship at an international PR & Marketing agency in London. You might assume that with all this busyness, I would use my weekends to rest and re-charge. No chance. Weekends were crammed to the brim, so much so that I often let people down last minute because I didn’t have enough time to fit everything in.

I am a self-confessed perfectionist, setting high expectations for myself, and beating myself up if I fell short of them. This has all had to change over the past six months.  My health started to seriously impact my quality of life back in January when I started working full-time on my clinical placement.

The daily grind of a commute up into London combined with the stress of trying to pass my placement certainly didn’t help. In fact, there is a huge amount of research showing that stress can have a significant impact on physical health. It was around this time that I started having to take sick days off from placement. Some days the pain was so bad that I would end up in tears at the GP first thing the next morning.

I have been working for as a Health Intern in London for the past four months; a role which I enjoyed but found incredibly stressful (reflective of the PR industry). My health was impacting my work so severely that I was only able to make it into the office a few days a week. At this point, I still didn’t know what was wrong with me, and I started to wonder if it was all in my head.

Whilst in my heart of hearts I knew that I needed to stop my job in PR, I couldn’t help but beat myself up, and I felt a real sense of failure. Fortunately for me, I have a very loving and supportive family and boyfriend, all of whom encouraged me to do what I felt was right for me. Ultimately I decided that although the company were understanding about my condition and were prepared to let me work from home, I felt unable to accept the full-time role that they offered me.

Fast forward six months, and I have just received a diagnosis of Chronic Fatigue and Joint Hypermobility Syndrome. To say I am relieved is an understatement. I am of course finding it very difficult to come to terms with this diagnosis, however at least I am now able to move forward. I am under the care of a brilliant rheumatologist who has referred me to all the relevant therapists.

Treatment for Joint Hypermobility Syndrome and Chronic Fatigue is generally holistic – there is no ‘cure’. Instead, you must learn to manage the condition. Joint pain can be managed with anti-inflammatories and painkillers, whilst physio can help with improving muscle strength, fitness, posture and balance. Pacing oneself is a technique commonly employed by Occupational Therapists, although it has a limited evidence base.

My friend Jess, who has kindly let me write this post for her blog, upon hearing of my new diagnosis, sent me a link to the Self Compassion website. This got me thinking about how I need show myself a little more love using the three main elements of self compassion: self-kindness, common humanity and mindfulness. I certainly have a long way to go, however I wanted to share with you a few examples of ways that I have started to show myself more self-compassion over the past few months.

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Saying no

I’ve pulled out of a marathon, turned down job offers and pulled out of a choir that I loved. However, these are all decisions which I do not regret. Luckily, I have joined a very welcoming and friendly local choir!

Slowing down at weekends

My weekends are now important times for me to rest, re-charge and spend time with loved ones. On the advice of a good friend, I have started to limit myself to one ‘main’ activity a day. This could involve seeing a friend for lunch or getting my hair done.

Keeping it real

Rather than focusing on what I can’t do, I keep reminding myself of what I am good, what I have achieved and what I love.  I am incorporating these factors into my new career as a Freelance Dietitian.

Utilising my peak hours

I’ve started to recognise when my ‘best hours’ are. I work best in the mornings, before the brain fog from ME kicks in. Conversely, I prefer to exercise in the evening as I find swimming or Pilates a relaxing way to wind down. I’m now trying to structure my day accordingly.

Make it easy!

I’ve started to try and find shortcuts around the house to conserve energy. I’ve started doing online food shops, have stocked the freezer with healthy and satisfying ‘fast food’ options such as sweet potato wedges and veggie burgers, and try to batch cook at weekends. I’m also having my hair cut shorter to make it less high maintenance! I’ve even resorted to tinned and pre-prepared foods like mashed potato and baked beans for days when I have less energy to cook.

Exercise for enjoyment not punishment

This has been the most difficult change. I spent years believing that the harder and faster the exercise, the better. I am now restricted to low impact exercise and have developed a new-found love of swimming. For me, 20 lengths are my threshold. I never go above this, as I know that would be over-doing it, however if I feel like doing less, that is fine too.

I also love walking and Pilates; however, I have stopped going to Pilates classes as I realised that the fast pace of the class was doing me more harm than good. For me, exercise is about maintaining joint movement, managing my pain and releasing feel good endorphins rather than punishing my body.

Being open and honest

I’ve never been one to openly share my emotions, and I was particularly worried that disclosing my new diagnosis to the dietetic community might appear ‘unprofessional’. However, since reaching out to other dietitians I can honestly say I have been overwhelmed by the amount of support and encouragement I have received. Without this, I would not have been confident enough to take the leap of faith into freelance dietetics!

Know what relaxes you

This is something I am still working on, as a common symptom of Joint Hypermobility Syndrome is constantly being in the fight or flight mode due to autonomic system dysfunctions. This means that I find it incredibly hard to understand when my body is exhausted. I have started to build in periods of relaxation into my day. For me, this involves listening to podcasts or classical music, doing gentle Pilates and reading. I do enjoy meditation, and this is something I’d like to get back into.

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If you would like more information about chronic fatigue (ME) or Joint Hypermobility Syndrome, please feel free to take a look at the following websites:

Hypermobility Syndromes Association

Joint Hypermobility Syndrome – NHS

Chronic Fatigue Syndrome – NHS

The ME Association

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