Carers Week 2020: Selina’s Story – Parenting with ME

June 8, 2020

My name is Selina I am 37 years old from London and have 4 children.

After many years of fluctuating neurological conditions in 2018 my health changed for the worse. I had to give up my dream of becoming a midwife and pulled out of my 2nd year of university. I studied 4 consecutive years prior to this.

My children have seen me go in and out of hospital so many times I have lost count, often rushed in by ambulance and I’ve had many admissions. They are so strong and I admire them so much. One day I woke up and every symptom I ever had came at once. I could not move. My whole body felt like it was on fire and I had pain everywhere.

My children have seen me go in and out of hospital so many times I have lost count, often rushed in by ambulance and I’ve had many admissions.

I got diagnosed with ME/CFS in late 2019 and Fibromyalgia in 2019 I also have multiple other diagnosis's. I have 17 years of fluctuating illness. I did not know what to do. I was talking to my GP up to 4 times a week and trying all kinds of medication. During this time, my children stepped in. I have 4 fantastic daughters who I am very proud of. Being a single mum with chronic illnesses has been so difficult. There are days where I cannot leave my bed. I need to lay down and I just can’t function.

We get home deliveries online and my eldest two do a lot of cooking ,housework and taking care of me. I feel like such a burden to them. I have one who is doing GCSE’S at the moment but she helps me so much. I have a 7 year old who is very understanding and loving. Sometimes she lays with me, we talk and she always checks in on me. Imagine, a 7 year old  who has to bring water to your mother who is ill. I try my very best not to show my girls how much pain I am in. My little girl cries sometimes and we cuddle. When I ask her what’s wrong she says ‘I don’t want you to die mummy’. I reassure her and explain I just feel a little sick (even though it’s not the case) but having a sick parent really affects children emotionally and mentally.

We do things as a family when possible, Watch a film, drawing etc which I cannot fully participate in but I try so hard. I always tell my girls how much I love them and appreciate them.

My daughters are young carers and have not done much since the pandemic. I think having trips and time out for them is so important, and, someone to talk to. My eldest does all the forms and bill’s as I just don’t have the capacity to. Hopefully I will get some support. It’s been a very hard fight. I had to make a claim for benefits last year and now I am fighting PIP. Sometimes I just can’t take it.

I finally had another adult social care assessment so will be getting a carer to help with personal needs and around the house. This takes the stress off the children. They wash me and dress me. I don’t know what I would do without them. My 11 year old get upset because I cant do what I used to but I do the best I can. I just hope that it does not impact them too much.

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