I often tell people I'm not just my multiple sclerosis (MS). It usually means I don't want people to burden me with specific labels because of my MS, but I also mean something else by it. I'm not "just my MS" because I live with multiple long-term physical and mental health conditions (LTCs).
MS has just become what I’m known for. Before my diagnosis, however, I was already living with polycystic ovarian syndrome (PCOS), obsessive-compulsive disorder (OCD), and anxiety and depression.
In the years following my MS diagnosis, I also developed chronic hives (urticaria) and angioedema (swelling in the deeper layers of skin, usually triggered by an allergy) and irritable bowel syndrome (IBS). Living with one condition can be hard enough, so what are the challenges when living with multiple, and how do I manage them?
Coordinating physical and mental health support
Physical and mental health conditions are often seen as separate and treated differently. In the UK, it often feels like two disconnected healthcare systems. They don't talk to each other or offer joined-up support. It's been up to me to coordinate everything and ensure that all my consultants know the impact the conditions might have on each other.
For example, my MS bladder issues and the frequent need to pee make it hard when I'm outside my home because I have an innate fear of using public toilets caused by my OCD.
My hives/angioedema greatly impacted my self-esteem and confidence (as it affects how I look), which has fed into my depression and anxiety. I make sure my healthcare teams are aware of these issues. By being open with them, I can have honest and more realistic conversations about management and treatment.
When you live with multiple LTCs, chances are you're taking a lot of medications. To make things easier, I ensure all my prescriptions are dispensed by the same pharmacy. They have my notes on their system and can see all my medications, include the specific brands I need, dosages, and any potential drug interactions.
I've developed a personal connection with the staff there, so they know who I am if I pop in or call with a query.
Setting reminders is also a must for me. At least one of my medications needs to be taken at the same time every day, so I have alarms set on my phone. I keep checking throughout the day as it helps me keep track of what I still need to take.
Unfortunately, none of my conditions or personal circumstances qualifies me for free prescriptions. Taking lots of medications is expensive. I ease the financial burden by paying for an annual pre-payment certificate, which acts like a "season ticket."
Google calendar runs my life. I can colour-coordinate commitments, set reminders, and make notes for any appointments I'll need specific info for.
Most importantly, I can share the calendar with the rest of my family and cross-reference it against other schedules. It makes it easier for everyone to see where I'm supposed to be and when and for me to coordinate getting help from my parents with transport.
Organising the paperwork
If you're treated at several hospitals in the UK, they often can't share medical notes and test results.
My neurologist can't access my dermatologist's notes... my gastroenterologist (a specialist in diseases of the digestive system) can't access my OCD therapist's notes...
You get the picture. My GP and I have to act as coordinators, so I've developed a strong relationship with my GP and set up sturdy shelves at home to hold the paperwork. I ask for copies of all my clinic letters and test results and keep a record of all my appointments. It means that I have easy access to information about all my conditions, should one of my consultants require it.
Making lifestyle choices to suit all conditions
Diet and exercise are essential for everyone's health, but it's a juggling act for me. What is suitable for one condition isn't so good for another. It’s taken trial and error to find what works for me.
I’ve had to follow a low-histamine diet to manage my hives. However, most things I've had to eliminate are good for maintaining a healthy lifestyle with my MS. It's meant being creative with what I can eat and ensuring I'm taking dietary supplements if necessary, which has been managed with my doctors.
I've been sporty all my life – it keeps me happy and grounded. But getting hot exacerbates both my hives and MS. Plus, MS fatigue sometimes means I don't feel like doing anything.
It's been challenging, but I developed a regime that meets my needs. Dancing and Zumba allow me to go at my own pace, adapt routines if necessary and take as many water breaks to cool down as I need. I also don't have a team relying on me as I did with field hockey, so I'm not worried about letting anyone down.
Living with multiple conditions can be exhausting and mentally draining. I take the attitude that as I can't change the situation, I must find ways of managing it.
Support from my family and friends to implement this management plan always helps. So does a good relationship and open dialogue with all my healthcare teams.
Through these partnerships, I can continue to live more positively.
NPS-IE-NP-00463 July 2022