MSer Sarah Cross discusses how she deals with the ongoing potential for relapses with her condition and the possibility of progression
As a relapsing remitting MSer, one of my biggest difficulties is recognising a relapse. My first one many years ago was recognised by my consultant at my annual check-up appointment – he spotted foot drop when I walked into his consulting room.
After checking me over, he diagnosed a relapse which he thought had actually happened a few months previously but which was still affecting me. He prescribed a short spell of steroids to try and control it. I remember saying to him that I had wondered why my foot wasn’t doing what it should!
Since then, coping with the ups and downs of multiple sclerosis (MS) is a big challenge and, on a bad day, or if I’ve had a few bad days, one of the dark questions at the back of my mind is of course ‘is it a relapse?’ I’ve read somewhere that for it to be officially a relapse
• Old symptoms must be worse or new symptoms appear
• Symptoms must last for at least 24 hours
• They must occur at least 30 days after the last relapse
• There must be no other explanation for the symptoms
That all sounds very straight forward, but life and one’s day-to-day wellness just aren’t so clear cut. The obvious question all the time is ‘am I just off colour/a bit down/fatigued after a busy spell or is it a relapse?’ especially if you’re not feeling too good and you’re missing out on family gatherings/events to stay in bed and the negative gremlins start to goad you!
Confusion and fear
I find the advice of ‘listening to your body’ is much harder to follow than it sounds. The body and brain are so very complex and influenced by so many fears, knowledge, lack of knowledge, trying to appear well in front of friends and family, not wanting to make a fuss, not wanting to bother busy people such as GP, consultant, nurse over something that might be nothing. I end up more confused and fearful if anything. MS symptoms are known to be hugely variable and relapses could be anything. What’s my body really telling me? Is it my fears goading me again? Is it just the aches and pains of age? It’s very difficult to get a sensible answer and the unbiased truth from your body if truth be told!
And I know that getting treatment promptly for a relapse is important in order to reduce the amount of damage my rampaging immune system can do to my nervous system.
I’m currently having severe back pain which started about 18 months ago. Whilst I’ve had back pain problems on and off throughout my adult life (don’t we all!), and from a herniated disc 20 years ago, this pain has been severe but different from my ‘usual’ back pain. Again, the questions of ‘Maybe it’s a relapse because my balance, spasticity, leg weakness and drop foot are worse despite my exercising to improve those things?’ or ‘Is it just my old injury resurfacing but worse because I’m so much older?’ and ‘Is it simply triggering relapse symptoms?’ come up. I’ve recently finally contacted my GP and consultant because the severity is now stopping me sleeping and because I’m becoming reliant on anti-inflammatory and strong pain-killing drugs. My consultant has suggested an MRI scan to try and see what’s going on. He did suggest this about a year ago because I haven’t had a scan since I was first diagnosed some 15 years ago in order to see how my MS was progressing.
I think my reluctance then was the fear of knowing too much about my MS, even though it could help me with my back problem which is probably nothing to do with my MS. But that word ‘progressing’ does strike fear into me!
Secondary progressive MS
I’ve only recently become aware of the possible transition to secondary progressive MS. ‘What’s that?’ ‘Do I want to know?’ ‘Do RRMSers always progress towards secondary progressive?’ ‘Why do/don’t they?’ ‘Can I prevent it?’ ‘Should I just keep going as I am and just not think about it?’
It’s easy to do that when you feel well but when you’re not feeling well that’s when the fears, confusions, doubts, denials arise.
What I’ve learned since joining Josephs Court is that I need to try and keep myself as fit and healthy as I possibly can. Josephs Court’s staff, with their exercise regimes and classes, wellness training such as mindfulness, reflexology and seated yoga, and social events keeping MSers in contact to share life stories, experiences and everyday life have helped me massively to achieve this.
But I still have problems knowing when I need to ask for medical help, and having the confidence to do this when my gremlins are telling me that I’m simply making a fuss and everyone’s far too busy to deal with my fuss! But I’m confident that keeping in touch with Josephs Court, MS-UK and their clients will continue to help me cope with my MS and to ask for help without wasting time worrying about my fears, and worrying that I’m wasting other people’s time, so that I can live my MS life as positively as possible.