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Twists & Turns

By Rachel Botterill

I am a passionate unapologetic advocate for the Chronic Illness community, never afraid to discuss the nitty gritty of what life is truly like with chronic illnesses and rare diseases. I am a wild soul navigating life with Ehlers-Danlos Syndrome, ADHD, Postural Orthostatic Tachycardia Syndrome, Second degree AV heart block, Gastroparesis, Undifferentiated connective tissues disease (Sjogren's, Lupus & Raynaud's), Autonomic Dysfunction, Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, Endometriosis and polycystic ovarian syndrome. I am a paediatric associate practitioner within the NHS and have dedicated 15 years to front line care.

I absolutely love connecting with people from the chronic illness space so come and say hello Instagram @beautiful_adventures

Just one would have been manageable, just one would have been tolerable and I could have had time to accept that one. I feel I could have learned to adapt to it as being apart of my life and come to terms with it slowly however one turned into two, three, four, five and it carried on until I had more than I ever imaged I would. I am talking about Chronic illnesses.

When I was younger I never imaged for a moment I would have one illness let alone as many as I can count on both hands. I never saw this for myself but then again who does?

I had no time to adjust, adapt or prepare.

Its just thrust upon us and we are forced to accept it for what it is even though we know nothing about it (apart from how it makes us feel) and then for the likes of me each diagnoses spiralled and unravelled into more problems and illnesses and before I knew it I was carrying around a bag full of label's that I didn’t understand but where now attached to who I was.

I was already in the grieving process of a life I had lost to chronic illnesses and now having to accept these new parts of me was overwhelming. The thought of how I was going to navigate them was so consuming. I remember feeling like I was losing myself, my identity and the parts of me I had left I felt where being tainted by so many illnesses and diseases I was worried what parts of myself would actually be left.

Time became my biggest helper and healer, I spent time learning all about myself as if I where a new person. I educated myself on these new found parts and how to accept them to live equally within myself creating what is now the new me.

I have learned to live my life in a slightly different way to everyone else, to set myself healthy boundaries and limitations for health preservation and by doing that I am still able to achieve the goals I wanted to, be present with my family and friends a little like before and finally coexist with so many illnesses. I have learned the important of self care and pushing away the guilt associated with prioritising myself, but don’t get me wrong this is a process and these are still issues I face even now.

If these illnesses were allowed a space within me then I wanted to ensure I knew everything about them. I wanted to be even just one step, ahead as long as possible. If these illnesses needed to reside within me then I was going to make them wish they hadn't moved in and I wanted to give them a hard time to bring me down. I started meditation and mindfulness to attempt to strengthen my mind because I have always believed that a strong mind can carry my defective body.

I started this journey of self acceptance nearly 20 years ago and its safe to say that there have been times where I felt like I am finally getting to grips with life and having all these pain in the arse freebies and then in the next breathe I am struggling to even manage my nutrition, remember what day of the week it is and feeling so cut off and isolated from the world. Its most definitely a journey and I have come to learn that similarly to a roller-coaster it has a lot of heavy ups and downs, but I have to roll with it. I mean what other choice do I have? The grief of my old life slowly whittled away with time & now all I know is this one.

I guess what I am trying to say is that living a life with any illness or number of illnesses is tough, its unknown territory, its getting to know who you are, learning about new found parts and all about adapting and moving through the emotions surrounding that. So don’t rush, don’t push yourself to feel a certain way, accept anything immediately or pressure yourself to adapt rapidly. These lives are our own and we have to navigate the new direction the best we can at a speed that suits our needs. The lives we lead are going to be full of twists and turns your right, but as long as your buckled in and prepared then you'll make it on the straight & narrow.


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