The symptoms of Multiple Sclerosis are diverse, and each symptom or combination of symptoms can affect the life of someone living with MS to varying degrees. Yet when it comes to an overall impact on quality of life, bladder and bowel dysfunction often rank highest, especially if a suitable treatment is not found.
At the end of last year, Wellspect presented a webinar in conjunction with MS tracking app, Emilyn, aiming to explore quality of life after an MS diagnosis. Hosted by clinical nurse lead, Bev Collins, we discussed the topic with two of Wellspect’s ambassadors Kerry and Jane – both whom have MS related continence issues. Here we present highlights from the webinar but you can access the full webinar on demand using the button at the end of this blog.
How has MS affected your quality of life?
“At the point that I was diagnosed, I was in the prime of my life. I was 32, I had a happy and healthy family and a good social calendar. I was laying strong foundations to have a fulfilled life and I had a lot to look forward to. So, when I was diagnosed with relapsing remitting MS, it was a bolt out of the blue. All those plans that I’d had for life were just shot to pieces.
“My symptoms have varied in severity, along with duration. We’re all varied in our symptoms and it’s our own MS. I have MS seizures, poor mobility, cognitive issues or brain fog, dysphasia, pain and numbness. Bladder urgency and chronic constipation are something that I also have to deal with. So, when you look at all of that put together it’s going to have a huge impact on your quality of life.”
“For the first few years after my diagnosis I had what I’d call pretty typical relapsing remitting MS, in that I would have a few nasty relapses that would leave me bed bound with fatigue for a couple of weeks. This was usually followed by pretty good recoveries. However, along the way I started to have symptoms that would become fairly constant.
“After a while I started to have Betaferon injections and I believe these greatly reduced the number of relapses I was having. However, the symptoms started gathering along the way, these included: poor balance, reduced stamina, leg weakness, general decrease in mobility and poor bladder control. I think that for me, life was starting to feel like I was living in an ever-decreasing restrictive box. Limiting where I could go and what I was capable of.”
What has helped you to improve your quality of life over time?
“For me personally, it’s been taking each one of the symptoms and dealing with them as they come. More importantly, it’s also learning how our MS affects us and everyone around us – family, children and carers. In the early days this didn’t dawn on me, my MS was all about me and I felt sorry for myself.
“One of the main things is expectation, having a realistic expectation. We were where we were, and we are where we are now. I realised that I was probably never going to get back to where I was, with each relapse it would leave some residual effects.
“Fatigue was a biggie for me. People say fatigue is just tiredness, but with MS fatigue some days you just can’t get out of bed. It affects everything from your way of thinking to your mobility. Over time I’ve developed fatigue management, if I’m going out for the evening, I’ve learned to get my head down for a bit and I’ll even cancel things just so I can get a nap in. That way I won't have to leave the party early due to fatigue.
“Another symptom that affects me greatly is my mobility. At first, I’d go to the shop using my elbow crutches and I wouldn’t enjoy it, I’d just come home and go to bed. Using a wheelchair seemed like such a big barrier, however, when I’d used that chair a couple of times I didn’t have to go to bed when I came back from shopping.
“Thirdly there was my constipation, where I have a neurogenic bowel. 75% of us with MS will at some point have a bowel issue. I treated this very conservatively at first and on reflection, I wasted a lot of time. Eventually I discovered Navina systems at an MS society event. All the medication, the enemas, the trips to my MS nurse and continence advisers were greatly reduced because Navina enables me to go to the toilet.
“Now I have my Navina days, they’re 3 days a week. I’m not chained at the toilet anymore and I have much more control over my days so I can continue to get on with my life.”
“I at some stage realised that my life wasn’t to be as was previously. I wasn’t going to be able to have late nights. I needed to live a slightly more staid, normal life and not push myself physically. So, lowering my expectations of what I was capable of. Once I accepted that, life became better.
“With my bladder problem, I also started off with very conservative things. Give up coffee, do some pelvic floor exercises and visits with my continence nurses every couple of months. It became clear that even after I’d done a wee there was increasingly more and more urine being left behind in my bladder. So, no wonder I was always needing to go to the loo, I wasn’t fully emptying my bladder.
“My nurse mentioned to me that I could try intermittent self catheterisation. Even then it must have been at least a year, maybe two, before I decided that life with my bladder as it was was pretty miserable and I was going to have to take this route.”
Next week, we'll share some of the answers from the Q&A session, in the meantime you can watch the full webinar on demand using the button below:
To learn more about Emilyn, the MS tracking app, here: