Nikki Ellis from Staffordshire is the subject of our most recent blog.
After suffering from chronic illness for 12 years, she has at times been bedbound, requiring the help and support of her family to care for her daughter. After struggling to get a concrete diagnosis and experiencing mental health problems because of her illness, her journey led her to a job in which she is able to use her experiences to help others and find a sense of purpose in her health struggle.
Here she tells us more about her experiences, how you might get referred to a local chronic pain clinic, and how you can achieve the same as she has.
Nikki, tell us briefly about your health journey and diagnoses so far.
My journey started almost 12 years ago now when I was 25 and pregnant with my daughter. It’s changed a lot over the years, it started with muscle weakness in all four limbs and then progressed to chronic pain and fatigue as well as cognitive symptoms such as memory loss, dizziness as well as noise and light sensitivity.
I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome six years ago, but some of my condition is still a question mark and may never be diagnosed. I also have fainting spells due to low blood pressure but I’m currently on medication to control that.
I’ve been tested for many things along the way, Lyme disease being one. My symptoms fit with a mixture of conditions so it can be difficult to get a definitive answer.
How has this journey affected you, physically and emotionally?
It’s a continual adjustment. You mourn for a life lost through no choice of your own. Coming to terms with that is difficult and can take a long time. I don’t think the journey ever ends and it’s not plain sailing. I would definitely describe it as a rollercoaster ride. Acceptance was the turning point for me but having to accept that your future will most likely include continual pain is not an easy thing to do.
“It’s a continual adjustment. You mourn for a life lost through no choice of your own. Coming to terms with that is difficult and can take a long time.”
I’ve had mental health issues such as depression and anxiety which I am now getting help for, but when suffering with a chronic condition, you focus so much on your physical health that you forget the importance of your mental health. Both are equally important and each can have a detrimental effect on the other.
What is your role at the chronic pain clinic, and how did it come about? Is it part of the NHS?
My official title is Patient with Lived Experience, but I like to refer to myself as a Patient Mentor. I attend the Pain Management Programme (PMP) that we run for chronic pain patients referred through the NHS.
I am there to both run and assist with sessions following ACT (Acceptance and Commitment Therapy) using my own experiences with these strategies, to support and advise the patients. I also tell them my story and offer support throughout the course.
The role came about after I went in to help them test their virtual PMP (I trained in acting at college and university and worked as an actor before I had to give up working due to my condition), and they offered me the job following that.
The medical team I work with are fantastic. They are very passionate and knowledgeable about persistent pain but what they can’t offer is experience and understanding, which is where I come in.
What do the patients you see get from the service your centre offers?
They get access to a wide range of professionals who specialise in persistent pain and they are taught strategies and techniques to help manage their symptoms.
The PMP is not designed to get rid of pain but to help patients work towards living a fulfilled life with pain. However, I believe the most impactful thing initially is to be surrounded by other patients that understand what your are going through. Living with a chronic illness can be very isolating. You may have supportive friends and family but until someone experiences persistent pain then it’s difficult for them to understand. So these groups offer great support within the people you meet as well as from the advice given.
“Living with a chronic illness can be very isolating. You may have supportive friends and family but until someone experiences persistent pain then it’s difficult for them to understand. So these groups offer great support within the people you meet as well as from the advice given.”
What does your role mean to you? What positive impact has it had on your life?
It honestly means everything to me. It’s given meaning to my own journey. To be able to give back now that I’m in a good place with managing my own pain, is priceless. I completely empathise with all the patients, I relate to each and every one of them and when they tell me I have given them hope because of where I am now, it means everything.
I honestly believe that I have improved even further since joining the team as I’m getting the support from the groups as well.
How do you manage or adapt when you’re not well enough to work?
Fortunately, I haven’t had to miss many sessions because I am motivated to push through because I enjoy it so much.
However, if I am having a particularly bad day, I never feel alone. I know the team are understanding and they are there to support me as much as the patients.
I’ve never felt so relaxed about my chronic illness, it’s a blessing. I really couldn’t be in a better place, as my colleagues see and help with persistent pain every day.
Is this service available in other parts of the country? If so, how should people look to get referred?
My understanding is that many NHS trusts offer pain management services and in some cases, this may be delivered by an external organisation.
The best place for people to find out more about what is available, is to ask their GP.
“I’ve never felt so relaxed about my chronic illness, it’s a blessing. I really couldn’t be in a better place, as my colleagues see and help with persistent pain every day.”
If someone in a similar position were to read this and fancy doing the job you are doing, how might they go about this?
Let your healthcare team know that you are keen to get involved, how much time you can commit and what skills you might be able to bring!
I firmly believe that patient input is paramount with chronic illness, who is better to advise patients than someone who lives with it!
For more information on the NHS services offered for pain management and support can be found here.
Search for your closest pain management service here.