Living with a Chronic Condition – My Illness and Me

Hello

Hello and welcome to my page. I’ll start by introducing myself. I am a married mum to three boys. I have a full-time job that I love (though, I have to remind myself of this when its stressful). I enjoy going out, but I like staying in just as much. I love food…. a lot. I absolutely adore my family and friends. I like to read and enjoy music. I have travelled, studied and worked since leaving school. I have worked in retail, hospitality and the travel industry. I have worked in a bank, for the inland revenue and in telephony centres. And I have worked for care agencies, the NHS and the Local Authority. I love working with people, talking to people and listening to their stories. And now, for the first time, I am going to share mine.

My Story

I am living with a chronic illness and I am sharing my experiences in part, to help others and in part to help myself. I want to share how my condition impacts on daily life, how it can be managed, and how living with a chronic illness does not define who you are as a person. That there are still so many positive experiences to have and observe in the world and, that even on the darkest of days there will be light shining through it. I have never really spoken of my condition to others, not at length or of any detail, not even with my family. My husband knows most things, having seen it first hand and is very supportive but no one else.

This is really personal to me. It is my life. It is happening to me. A lot of things I am still processing and a lot of things are still raw. My condition became so difficult to manage three years ago. It progressed very quickly which impacted on both my physical and mental health. I was offered counselling which, I accepted, and was diagnosed with PTSD following the trauma of what happened combined with the traumatic birth of my first son. It is the second part, as I mentioned earlier, as to why I’m doing this. I need to talk about it. To work through it. I hope to do so positively, to help others and to shine a light on this invisible illness.

I am not writing this for any sympathy and do not want it to be all doom and gloom. I simply want to share my experiences. To share any tips or tricks I have learnt along the way that may help others in similar circumstances. Whether that be an individual living with a chronic condition. Or, someone living with a person, living with a chronic condition. I will do so compassionately and with some humour, (laughter, I have found, is key to getting through it all at times). Also, for anyone to share theirs. I truly welcome any advice, thoughts or feelings anyone wants to offer. I just ask that this is done in a polite and non-judgemental manner.

I am a 38 married mum of three and I am living with Ankylosing Spondylitis.

What is Ankylosing Spondylitis?

Ankylosing Spondylitis, (AS), is an inflammatory disease effecting the spine and other areas of the body, (nhs.uk). It causes back pain, stiffness and pain and swelling in other parts of the body. This is caused by inflammation of the joints (arthritis) and inflammation when a tendon joins a bone (enthesitis). It also causes fatigue, (nhs.uk). There is no cure for AS. 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). For the most part, the condition can be controlled through exercise.

If you are recently diagnosed, or wanting more information on AS for yourself or someone you know, visit the National Axial Spondyloarthritis Society Homepage | National Axial Spondyloarthritis Society (nass.co.uk). NASS is a Uk charity supporting those with AS. They offer great advice and support to those suffering with the condition and raise funds for the continued research into AS.

Whenever I have been asked about my condition in the past, very few people have heard of it. Those that have, already know someone who has it. 1 in 200 adults in the UK have AS. NASS report on their website that this is twice as many as those with multiple sclerosis and Parkinson’s yet, most people have heard of both of these conditions. 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.

This lack of awareness around my condition is another reason I am writing about it, as I know other bloggers out there are also doing. For me, this page is around sharing my experiences, raising awareness and hopefully providing some help and reassurances to others in similar circumstances. I know how you feel and I understand. You are not alone and it will be okay. This disease does not define you and it will not define me.

Mumma Spoonie

So, why Mumma Spoonie? Mumma, because I am a mum to three, very loud, very beautiful boys, aged 7, 5, and the youngest is 6 months. And, Spoonie, because that is the commonly used term for those of us living with a chronic condition. It stems from Lupas blogger Christine Miserandino, who 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. You can learn more about the ‘Spoon Theory’ on Christine’s page But You Dont Look Sick? support for those with invisible illness or chronic illness About Christine Miserandino – But You Dont Look Sick? support for those with invisible illness or chronic illness. Also, I wanted a name linked to what I was going to write about, to let you know instantly what kind of things you may find within my page and Mumma Spoonie wasn’t taken, and I thought it sounded cute.

I do not profess to know all there is about chronic illness or indeed my own condition. I can only know how my condition affects me and my life and 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 then fab, but I absolutely do not wish to frighten, discourage or upset others in any way. 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. There are a lot of people out there doing the same thing and they have inspired and provided me with some confidence to do the same.

I will not lie, I suffer with anxiety and putting myself out there feels incredibly daunting. I’ve talked myself out of this so many times, in fact, this has been something I’ve wanted to do since I was last on maternity leave, 5 years ago, so, yeah, it’s taken a lot for me to do this, but I’ve decided it helps me to write down how I’m feeling. To be able share this within a community of like-minded people feels quite cathartic as well as a privilege, thanks to social media. I’ll be honest, I am not up to speed at all with all the tricks you can do with social media so I’ll apologise if my posts are a bit basic but then that’s also true of me. No airs or graces, just honesty and compassion.

So, to all you warriors out there, I look forward to getting to know you and sharing more of my stories with you. For now, though, have strength, enjoy the little things, look for the light in the darkness and know you can do this, because you already are.