Welcome

I am a 38, married, mum of three boys. I work full time in a very busy role, which I love, and, I have an inflammatory disease.  I was diagnosed with Ankylosing Spondylitis after a long battle with lower back and joint pain and 11 years after I first went to the GP.

So, why do this now, you may be asking. Well, it is something I have wanted to do now for a long time. I just want to talk about it. It helps writing it down. Talking about it but without actually having to talk about it. To raise awareness about it and with that month being Ankylosing Spondylitis Awareness month I decided to go for it.

Anyone who has ever asked me about my condition has never heard of AS and, whilst still a rare disease, over 220,000 adults in the UK have the condition. This is reportedly twice as many as those suffering with Multiple Sclerosis and Parkinson’s which most people have heard of. I am not saying more awareness isn’t needed for either of these conditions, more awareness is needed for all conditions, I am simply saying that few people have heard of Ankylosing Spondylitis. 

I am sharing my experiences in part, to help others and in part to help myself. My condition became so difficult to manage four years ago and progressed very quickly, which impacted on both my physical and mental health. After some counselling I was diagnosed with PTSD following the trauma of what had happened regarding my health, combined with the traumatic birth of my first son. Following the counselling, I started writing down how I was feeling. It helped, feeling like I was talking to someone, even though no one was reading it. Now, I want to share that with you and, how living with a chronic illness does not define who you are as a person.  

What is Ankylosing Spondylitis

So, what is Ankylosing Spondylitis? Ankylosing Spondylitis, (AS), is an inflammatory disease effecting the spine, SI joints and other areas of the body, (nhs.uk). It causes back pain and stiffness, pain and swelling in other parts of the body – caused by inflammation of the joints (arthritis) and inflammation when a tendon joins a bone (enthesitis) and fatigue, (nhs.uk). There is no cure for AS and any damage caused by the condition cannot be reversed. However, there are treatments available to relieve the pain, symptoms and delay its progression, (nhs.uk) and for the most part, the condition can be controlled through exercise. For more information on Ankylosing Spondylitis visit Homepage | National Axial Spondyloarthritis Society (nass.co.uk)

I do not profess to know all there is about chronic illness or indeed my own condition. Just how my condition affects me and my life. I am still learning. Every day, as this condition grows and changes with me. So, this will be my truth and my perspective and, if it helps others along the way, then fab. For me, writing this has been something I’ve wanted to do for a long time. To tell my story and share it with our community of warriors living with chronic conditions. 

Mumma Spoonie

So, why Mumma Spoonie? I am a mum to three, very loud, very beautiful boys. Spoonie is the commonly used term for those of us living with a chronic condition. It stems from Lupas blogger Christine Miserandino. Christine explained her lack of energy using spoons. For those of you who don’t know, put simply, it’s how many spoons you need for each activity with only so many spoons a day you can use before running out, thus running out of energy for the remainder of the day. 

So, to all you warriors out there, I look forward to getting to know you and sharing more of my stories with you.