A series of interviews in which patients share their experiences - in their own words
Please tell us about your condition
My name is Denise Nolson. I’m 46, happily single and two years ago, I was diagnosed with rheumatoid disease (RD). Three months later I had to sign off sick from work, due to daily pain and fatigue, and - although I'd love to return to employment - at present I consider myself medically retired. I've since been diagnosed with fibromyalgia, ME and Sjögren's syndrome, all of which are commonly linked with RD.
What treatment or therapy do you use?
I'm on biologic medication for my RD, plus several other daily medications including anti-depressants, pain relief, factor V Leiden, and treatments for IBS and hypertension. Alongside these I have found holistic practices helpful, such as conscious breathing, meditation and chanting, as well as an electric under-blanket, heating pads, Voltaren gel and compression gloves.
What impact has it made on your life?
This could be a book! In chronological order, I have experienced constant pain, fatigue, losing my job and my house, homelessness, major anxiety attacks and worsening depression. In addition, I’ve become physically disabled, required crutches to walk, a mobility scooter, raised toilet seat, shower chair, bed rails and grab bars outside my front door. The situation has been further compounded by not being able to wash or dress myself on some days, sleeping for up to 18 hours and, conversely, having to endure bouts of insomnia.
Is adherence - sticking with your treatment regime - a challenge?
Not at all, it's a pain, but manageable on most days. I set the alarm for morning tablets, eye drops and mouth spray, and take a lax powder drink an hour later. The alarm sounds again in the evening for tablets, night eye gel and another lax powder drink. Then there’s a further alarm every two weeks for a biologic injection. I also self-manage pain, using paracetamol, tramadol and hydrocodone. It would be a real struggle to manage around working, or a family, but living alone means my life can be very simple. It's become a necessity.
What side effects, if any, do you have to manage?
Headaches, dry skin, eyes and mouth and bowel pain.
Are you getting enough information about what medicine you take?
Yes, but mainly because I self-educate. Shortly after diagnosis I started sharing my story through my blog - Singlerheum - and the online RD community has proved to be an amazing support network, which I'm proud to be a part of.
Are you looking for an improved treatment?
I'm looking for a cure! But in the meantime, an effective treatment would be great. I'm on my fifth RD med with no improvement so far.
Do you think that the pharma industry listens to you?
Honestly? I don't think they care, although I'd love to be proved wrong. A lack of thought given to containers alone causes millions of patients to experience further hardship. As both an active patient and advocate with RD I've never been asked any questions by the pharma industry. I have, however, signed up for a new med packaging trial next year, so we'll see.
How would you like to see communication with drug manufacturers improve?
I don't think there is any communication. In the UK, you are prescribed a med and you take it - that’s it. You have no say in terms of the brand, manufacturer and packaging. I'd love to see customer service advice lines, plain English on information leaflets and drug manufacturers with patient-friendly social media platforms that encourage open and unsolicited communication.
Are you feeling positive about the future?
Yes. Despite worsening mobility and physical health - and thanks in no small part to a fabulous GP and some great private therapy - I'm working on being grateful for the good in my life and also achieving peace. Acceptance of my multiple conditions has certainly gone a long way towards that. I have the support and love of friends and family, as well as the online RD community, and that keeps me moving!
For advice and support go to rheumatology.org
Find out more about Denise story at singlerheum.com
‘The Patient Voice’ interviews are a collaboration between Pf Magazine and talkhealth.
talkhealth is one of the leading online health communities in the UK, providing free information and support to those with chronic health conditions; whilst collaborating with pharmaceutical and healthcare companies, charities and medical professionals to develop sustainable health programmes and solutions.