Chronic pain eats one like a lovely bar of chocolate! – by Huyaam Samuels

huyaam-samuels

Huyaam Samuels, wearing a hat in support of ICPCN’s Hats On 4 CPC campaign in October this year

To all readers, I’m Huyaam Samuels, 18 years of age. I suffer from a rare condition called Pseudoachondroplasia and Hypermobility Syndrome, all of which causes chronic pain; my main enemy. This is how I met Dr Meiring and her Palliative Care Team at Paedspal, which lately has been growing with the addition of many great people.

I suffered mainly from severe pain throughout my body, muscle spasms and backache. Many doctors could not help me and did not take me seriously. Being with this Palliative Care Team and Dr Meiring is something which I hold close to my heart because it gave me hope when I believed there was none. We have built a good relationship over the last few years of knowing each other. I believed, because of being diagnosed with that huge word, I wouldn’t be able to live like a normal teenager and I cried for days about it. But today, I’m living with the help of the palliative care team and my mother.

“Being with this Palliative Care Team and Dr Meiring
is something which I hold close to my heart because
it gave me hope when I believed there was none.”

Chocolate

Chronic pain eats one like a lovely bar of chocolate! It has been well managed by the team through everything they do at their practice. Chronic pain dissembles your life so badly, you’re not sure in which direction to turn. We’ve been together for five years so they know all my strengths and weaknesses already – definitely a good thing.

Palliative Care has improved my quality of life, not only for myself but for my family as well. Guiding me, helping me, providing and most of all supporting me. It is not all about death, for me or for anyone, it is about making things easier for oneself. And I found myself, during the whole course of these five years. Palliative has many positive meanings for instance:

P – patience, A – assistance, L – loyalty, L – love, I – improves, A – attentive, – occupational therapy and family therapy, I – intelligent and V -valuable/Ubuntu*, E– extraordinary.

I suffered through not being able to write easily due to muscle spasms in my fingers and hands. With the help of Occupational Therapy, Michelle Flowers helped me in many ways. Besides being enchanted by the beautiful fragrance of the aromatherapy oils, Fiona had massaged me and helped me when I was suffering muscle aches and pains or needed a friend. Di, the family therapist, has always been there, since day one. Di is someone who has the incredible ability to help you find your own path; and accept that this is what it is. My lifestyle is now adapted, but I am living with my condition and accepting it. That’s the key to success, to living with your diagnosis.

Throughout the ups and downs, Palliative Care lifts you up. So NEVER give up HOPE. We all have good and bad days but have hope, faith and never stop trying!

“Every Day may not be Good but there is Something Good in Every Day!”

*Ubuntu is an ancient Southern African word meaning roughly ‘I am who I am because of who we all are’ and epitomises compassion and human kindness.

This blog was published in the PatchSA October newsletter and has been republished with permission.

About the author

huyaamHuyaam Samuels is an 18 year-old young girl from Cape Town in South Africa who lives with a rare condition called Pseudoachondroplasia and Hypermobility Syndrome. She has been under the care of Dr Michelle Meiring and her paediatric palliative care team at Paedspal in Cape Town for the past five years. They have helped to control her chronic pain and find her ‘new normal’ as she comes to term with the challenges of living with her condition. She has just accepted the role as Youth Ambassador for PatchSA, the South African children’s palliative care network.

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