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April in April

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Published on Monday, 30 November -0001 00:00

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April in April

To write for the FMAUK platform I hope reaches many like me who feel like giving up, feel alone, isolated, have lost themselves entirely and don’t know how to begin again or even think about what to do next. Learning how to cope and carry on is an honour.

I write for people like me who suffer with Fibromyalgia, chronic pain, chronic fatigue, disability and have other life changing, limiting and altering conditions all over the world. I began writing after being diagnosed with Fibromyalgia and ME / CFS at 31 years old in October 2022 and I have spoken to so many people who have offered the kindest words, advice and support and are the strongest people I have ever come across. I salute you all. To those who have the same conditions as I do, but also for those who have other hidden disabilities as well as life changing and life altering conditions, you are an inspiration to me and you have definitely made me feel less alone than I have in a long time.

April is my name but not my birth month April fool’s day jokes get old now I must admit, but Easter has plenty of chocolate which is always good after a hot bath and in combination with a duvet, dog and hot water bottle I must say. That’s how rock ‘n’ roll I am nowadays! I am glad to see lighter days, I definitely retreat to nature with my dog to feel peace, to look after my mental health and I am thankful for my incredible partner, friends and family, a support system I couldn’t live without.

For me, the days ache, the nights are long and I battle week to week within my own body the chronic pain, the fatigue, yet the need to carry on, to work full time, to drive, to live.

I can’t lie, I grieve every day for the person I once was. I am absolutely still coming to terms with my diagnoses, but what keeps me going is reinvention and what I mean by that, is to create my own peace in my life to make me happier, to give me purpose and to enable me to feel fulfilled no matter the hardship. Every day is a debilitating battle.

I can only hope for the best and in the process, I am taking one day at a time. I certainly encourage this for you and also to be kind to yourselves. I also want you to enjoy the many festivities and celebrations we have in store over the months to come, the brighter days and evenings and nature changing with the seasons. Take as much of these in as you can, breathe in the fresh air and feel sunshine and wind on your face. I find my total peace with animals and nature and so I retreat there all the time and as much as possible.

I know this journey from the beginning, the endless investigations, GP visits, the down days, the rock bottom days and the nothing left days, we are now living with a body that we don’t know and don’t want. A physical and mental battle every day to reinvention and acceptance is one that many do not and will never truly understand. It is within sharing personal experience, relating to others and reading and researching about these conditions that we can find comfort and understanding and to feel less alone. Loneliness, isolation and helplessness are certainly what I felt at the beginning, at diagnoses and every day since within myself and I can admit that. I can share that and stand by that because this is my reality, my disability and my new way of life.

I struggle within my own mind and body daily. I know I have one hell of a journey awaiting me, one of acceptance and reinvention. I have spoken to so many people already through this charity and through support groups who are the strongest and most positive people and I salute each and every one.

I am grateful for the mobility I have left that enables me to still enjoy the outdoors throughout all the seasons with my rescue dog albeit shorter paced walks with plenty of rest stops; this is what gives me strength and purpose, it keeps me going for sure. I pay for it after every walk but for me, mentally, it is totally worth every step and every inch of pain. I have to keep going, I have to find strength on the days I want to give up and when I feel my most fed up because there is no other option.

You are all total warriors. You inspire me every day and help me come to terms with my diagnoses and feel less alone. I thank you for that.

I am yet to have my first rheumatology / ME CFS clinic appointments and so cannot share my experience of those as of yet but I am in high hopes I will receive the pain management and support here that I so need and that is so vital.

Until then, one day at a time.

April x