Talk Health, the patient voice online asked for responses to a questionnaire recently, which I duly sent in. As today is Rheumatoid Awareness Day I figured it was a good time to share my story here too.
1. Personal details – I’m keeping those ☺️
2. Tell us about you and your condition? I’m 47, happily single and two years ago I was diagnosed with Rheumatoid Disease. 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. Shortly after diagnosis I started sharing my story through my blog, Singlerheum, and have been delighted to have had over 9000 views. The online spoonie community is an amazing support network that I’m proud to be a part of. I’ve since been diagnosed with Fibromyalgia, ME/CFS, DDD and Sjorgens, all of which are commonly linked with RD.
3. What treatment or therapy do you use? I’m on biologic medication for my RD, plus a number of other medications daily including anti depressants, pain relief, and meds for hypertension, Factor V Leiden and IBS.
Alongside these I have found more holistic practices helpful including conscious breathing, meditation and chanting as well as an electric under blanket, heating pads, voltarol gel and compression gloves.
4. What impact has it made on your life? This could be a book! In more or less the right chronological order I’ve had to face up to daily
- constant pain
- fatigue that knocks you off your feet
- losing my job
- losing my house
- being officially homeless for three months
- having major anxiety attacks
- worsening of my depression.
Becoming physically disabled, needing crutches to walk and a mobility scooter, a raised toilet seat, a shower chair, a bed rail, a raised sofa and grab rails outside my front door.
Not being able to wash or dress myself some days, sleeping binges of up to 18 hours and conversely insomnia. Loss of an evening social life, it’s normally pyjamas by 6pm. Loss of a friend who felt I was ‘sick & needy’. Missing friends weddings and cancelling my own birthday due to fatigue and RD flares.
5. Is adherence (sticking to your treatment regime) a challenge? Not at all, it’s a pain, but a manageable one most days. Alarm for morning tablets, eye drops and mouth spray. Fybogel powder drink an hour later. Alarm for evening tablets, night eye gel, Lax powder drink. Alarm every two weeks for biologic injection.
Then self managing pain meds as needed, using Paracetamol, Tramadol, and Hydrocodone for breakthrough pain. 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.
6. What side effects (if any) do you have to manage? Headaches, dry skin, dry eyes and mouth, bowel pain and issues, GERD.
7. Are you getting enough information about the meds that you take? Yes, but mainly because I self educate.
8. 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 experienced improvement so far.
9. Do you think that the pharma industry listens to you? Honestly? I don’t think they care. I’d love to be proved wrong. Simple lack of thought given to containers and packaging alone causes millions of patients hardship just to open their meds. Certainly as both an active patient and Advocate with RD I’ve never been asked a question by the pharma industry.
However I have recently signed up for a new med packaging trial this year, so we’ll see!
10. How would you like to see communication with drug manufacturers improved? I don’t think there is any. Certainly here in the UK you are prescribed a med and you take it. You have no say in brand, manufacturer, packaging etc.
I would love to see more patient friendly packaging and plain English information leaflets. I’d love to see customer service advice lines on packaging. I’d love to see drug manufacturers with patient friendly Facebook pages to encourage open and unsolicited communication.
11. Do you remain hopeful? 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 gratitude for the good in my life and achieving peace. Acceptance of my multiple diagnosis’ has certainly gone a long way towards that. So yes, I am in pain daily, fatigued daily, limited to what I can do by how I feel daily, but I have the support and love of friends and family as well as the online RD community and that keeps me moving forwards each day!