For the past fourteen years, I have relied completely on carers and nurses to be able to get through each day. At the beginning, I required help with everything – including the most private of things, like going to the loo.
I honestly don’t really remember life without some sort of Carer and some sort of help for my medical needs. For the years that I spent in hospital, those carers became more like my family as I wasn’t allowed to have Team Taylor visit me due to being too ill. My carers were there for me when I had no one, and they helped me in so many different ways.honestly don’t remember life without some sort of carer and some sort of help for my medical needs”
“I honestly don’t remember life without some sort of Carer and some sort of help for my medical needs.”
One Carer read to me a page at a time of The Diving Bell and The Butterfly because she knew that it would help keep my dream of writing my own book alive. Another Carer taught me Polish and would come into my room with a new phrase to record onto my dictaphone for me to learn. One taught me all about fashion because she knew I was missing out on growing up with my friends. I cannot tell you how much these wonderful people helped make my long-term hospital stay easier to cope with.
One Carer, Lindsey, had the dirtiest laugh and would often sit there with me talking because she knew I needed someone, she understood my needs. When I found out that she had suddenly passed away, I cried because she meant that much to me.
The relationship between a Carer and a patient is incredible. My carers know when I need assistance and they know when I need to be left.
It is not an exaggeration to say that a Carer saved my life years ago. She knew that something was wrong with me, she sat with me whilst I seizured and when I had to be sedated. She fought doctors and nurses and demanded that I was taken to A&E. Hours after I arrived via ambulance, I was on the operating table having my appendix removed, as it burst.
“I have met carers from all different backgrounds and from all over the world.”
I have met carers from all different backgrounds and from all over the world. I had carers who were training to be doctors, carers who had been in the profession for years and some who had just recovered from major health problems themselves.
When I first returned home, I had to continue receiving care in the day. My needs were complex and I was completely reliant on carers to help me. A good community Carer has to be able to mould into the family setting. I have had incredible home carers that have quickly adapted to my situation. They had to learn about my M.E. and how unpredictable my health could be.
Looking after me was a two person job and my sister became a young Carer for me. Mum and dad were also carers for me but I really felt like my sister had to give up a lot of her life to look after me. I have always felt incredibly guilty for what she had to sacrifice, but I’m so proud of her for all she did.
Life isn’t easy for family members who are carers. They have to be around at all hours of the night, they have to be prepared to drop everything to be there if they are needed. But my family carers really changed my life. They were there stroking my forehead when I was being violently sick, when my body wouldn’t stop convulsing and when tubes were being placed into my nose and down my throat. They were there when the doctors didn’t know what to say, they were my advocates – they were everything. They understood how challenging it was for me and they were able to calm me through my sensory overloads.
They had to watch horrendous moments and they had to wait in the waiting room watching the minutes go by whilst I was in resus… those moments were horrors that no person should have to watch their loved ones go through. But they did, time and time again.
When Samuel came into my life, he became my Carer. The roles changed as my sister had to start looking after my mum and Samuel had to go from just being my boyfriend to looking after me too. Samuel had never been in a world that revolved around ill health. In fact, he hadn’t really seen someone he loved being rushed into hospital. It was a steep learning curve, as he not only had to be there to emotionally support me, but he had to be able to give me medications and injections. He had to know how to give rescue meds and he had to be able to make sure I was safe when I was having a seizure.
I feel like in the world of M.E. and other chronic health conditions, the role of being a Carer is even more difficult. You never get time off because my health fluctuates and I can go from being ok, to having to call an ambulance in a matter of moments.
My exhaustion can make me lose functions. I can go from having a conversation and laughing, to being in paralysis and being unable to speak.
In the past couple of years, I have been most fortunate to say that I have made some tentative steps forward with my health. I still suffer a lot and I still need a Carer but I have been starting to gain some independence, (a big plus is being able to go to the bathroom on my own!). But then, just like M.E. always seems to, it through a spanner in the works this week.
A few weeks ago, I had got to the stage where I could get around my flat without constant assistance – a freedom that brought me such joy. My exhausting symptoms were still a problem, often an exhaustion would fill me which meant I collapsed more. Still, being able to move around despite the risks, was incredible.
Then I had a fall a few days ago. I had been going back to bed and an overwhelming fog of fatigue came over me. I couldn’t think, my body didn’t even have the energy to get the blood pumping around it. My blood pressure dropped, I collapsed. Samuel had recognised that I needed help before I did. As I collapsed, he caught me and assisted me to the ground. As he put me into the recovery position and put a pillow under my head, he knew that I was injured.
I had fallen to my knees so quickly that they had crashed onto the laminate floor. Even with him helping make sure I had an ‘assisted fall’, my delicate body had still struggled. My knees had also gone in and out of place.
To cut a long story short, I ended up having to go into A&E the next day to have my leg assessed, when one of my damaged knees dislocated again. After a few hours and an X-ray, it was confirmed that it was a lot of soft tissue damage and that thankfully my knee had gone back into place.
The hospital told me that my knee weakness was going to be a long term problem and that I potentially would not be able to get back to where I was before.
So now I am back to having to be supported to get anywhere in the flat, and back to needing help to do anything. Samuel and my mother in-law have had to become quite hands on and I need support to do anything with Felicity.
Being a Carer is more than just physically being there for the person they are caring for. They need to be able to be an emotional support too. Samuel and my mother in-law are having to support me through my frustration of losing that little bit of independence that I had gained. They have to be able to assist me in what I want to do.
In all honesty, having a Carer has changed my life. They are essential to me. They care for the most vulnerable people in society, and speaking as one of those, ‘thank you’ will never be enough.