I often say to people I’m not just my MS. It usually means I don’t want people to define me by the fact that I have 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 urticaria and angioedema (chronic hives and deep tissue swelling) 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 in very different ways. In the UK at least, it often feels like two completely separate 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 are aware of the impact that the conditions might have on each other.
For example, my MS bladder issues and the frequent need to pee makes it hard when I’m outside my home because I have an innate fear of using public toilets, caused by my OCD. My urticaria/angioedema had a big impact on my self-esteem and confidence (as it affects the way 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’m able to 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 make sure all my prescriptions are dispensed by the same pharmacy. They have my notes on their system and can see all the medications I’m taking. They’re also able to record if I need a certain brand, specific dosage requirements and can check that there will be no interactions with other medications I’m taking. 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 my personal circumstances qualify me for free prescriptions. Taking lots of medications is expensive. I ease the financial burden by paying for an annual pre-payment certificate, which is like paying for a ‘season ticket.’
Google calendar runs my life. I’m able to colour-coordinate appointments, set reminders and make notes for any appointments for which I need to remember things. Most importantly, I can share the calendar with the rest of my family, and I can cross-reference against other calendars. 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
In the UK, if you’re seen at different hospitals, they often can’t share medical notes and test results between them. My neurologist can’t access my dermatologist’s notes and my gastroenterologist can’t access my OCD therapist notes…
You get the picture. It means myself and my GP 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 play an important part in everyone’s health, but for me it’s a juggling act. What is good 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 urticaria, however many of the 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’s what keeps me happy and grounded. But getting hot exacerbates both my urticaria and MS. Plus, MS fatigue sometimes means I don’t feel like doing anything. It’s been challenging but I worked out 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, like I did when I played field hockey, so I’m not worried about letting anyone down.
Living with multiple conditions can be exhausting and mentally draining, so 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.
UK/MED/20/0197 June 2020