From Relapsing-Remitting MS to Secondary Progressive MS: An Experience

I was asked a thought-provoking question the other day – has moving from Relapsing-Remitting MS to Secondary Progressive MS changed your experience of multiple sclerosis? It isn’t really a question that I have considered before, but my answer would be a ‘yes’.

Relapsing-Remitting MS (RRMS)

I was diagnosed with RRMS at 15 years of age and, although this undoubtedly had an impact on my sense of self – I was very aware that my diagnosis made me different to my peers – I was also able to largely ignore it when I wasn’t having a relapse.

Read More: My Experience of Having MS as a Teen

As I got older, I would have to take some time off work if I had a relapse but they become less and less frequent (I even went 8 years without one) and I had no noticeable symptoms day-to-day.  I was never encouraged to take Disease Modifying Drugs (DMDs),  so I didn’t have a physical ‘reminder’ that I was actually dealing with a chronic illness.  I am aware now that I was pretty blasé about the whole thing– I didn’t think about my diet, I knew I was healthy in regards to the amount of exercise that I did and, because I was okay most of the time with few relapses, I thought that me doing nothing was working. I truly believed that not surrendering to ‘oh poor, sick me’ was helping me to stay well.

Enter Secondary Progressive MS (SPMS)

I was aware that my MS was changing when I was in my early 30s and my kids were small.  Symptoms of ‘heavy’ legs, fatigue and temperature intolerance developed in the absence of any relapse. Things were different and I could no longer forget that I had MS – I didn’t have relapses lasting a few weeks where symptoms flared and then receded; the symptoms were there all the time. Not only that, they got more and more pronounced with each month that passed.

I could no longer bury my head in the sand thinking that my ‘don’t think about it’ attitude would continue to serve me well. I started to berate myself for not taking my MS as seriously as I felt I should have done all the years previously. I felt guilt, fear and worry about the future that may come and anger, at myself, for allowing myself get to this stage. For believing that I was invincible and that MS wouldn’t touch me in the way that it did others.

Enter Obvious Disability

MS is largely an invisible illness. Sure, some relapses may impact your body’s ability to move, but so much of it goes unseen:

As my body transitioned to SPMS, some invisible symptoms at the bottom of the iceberg started impacting me greatly and it was those – in particular, fatigue and ‘cog fog’ (which isn’t mentioned in the above picture) – that largely led to me having to stop working in the NHS.

Read More: Back to the Grindstone

Invisible symptoms are often easily hidden – at least until they start impacting your day-to-day functioning, as they did with my work. Physical problems, such as dragging feet and use of crutches, mobility scooters and wheelchairs, are not easily hidden.  People were suddenly more aware of my MS at a time when I felt like I was only becoming more aware of it too.  In some ways, I felt like I was having to reassure others that I was still the same old Jen whilst coming to terms with a whole new part of me – disabled Jen.

In my case, I can only liken the change from RRMS to SPMS to being diagnosed all over again.  I scoured literature about MS, thought about it all the time and started to reach out to others with MS through social media. I felt angry, pissed off and scared.  I finally had to admit that I had this life-long disease and start taking it seriously.

Changing Sense of Self

The reality is that I am the same Jen but with bits added.  I still love dancing to cheesy music, I just can’t do it.  I still love to run and do it often – but only in my dreams, where I am often walking around a city or running up a big hill (wishful thinking?).

Work

I still work, but not in the way I thought that I would when I joined the NHS as a newly qualified speech and language therapist back in 2002. I now work part-time, from home, to work around my MS and its symptoms.  I am proud to take an active role as a Shift MS Buddy, supporting others with MS.  I have started lending my voice as an MS patient expert to healthcare companies. So yes, I still work, but in a way that is accessible and using my experience of living with MS for the greater good.

Health

Whereas in the past I thought of myself only from the viewpoint of a young woman who wants to look as attractive as possible, now I look at my health holistically and focus so much more on my mental health than I ever did.  MS has brought healthy eating, yoga and meditation to my life. Would I have done this if I didn’t have MS? Who knows, perhaps advancing years and changing priorities would have brought them to me anyway. I am aware that I am not as physically strong and healthy as I think that I would have been without MS, but I like to think that I am mentally stronger and more robust because of what it has brought to me and the changes it has made in my life.

Read More: Big Life Changes

There is so much more that I can say about how my disability has impacted me, but I think that I am going to leave that for further blog posts; disability is a huge issue for myself and the wider society and I am still finding my way with it. I have been officially diagnosed with SPMS for about 3 years now and the symptoms that prompted me to think about the diagnosis started about 8 years ago.  It is only now that I really feel ready to start reflecting on my life as a disabled person.

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So, has moving from RRMS to SPMS changed my experience of MS? Yes, undoubtedly. It has made me take my health seriously and work out what I do and don’t need in my life. I am still the same person I always was, but whereas I used to keep my MS at the back of my mind and it would come out now and then, now it is always there. Sometimes I hate it, sometimes I actually appreciate it; it has brought me personal strength and resilience. I like that it has made me an even more determined and compassionate woman.

Of course, like MS isn’t a ‘one size fits all’ disease, neither are my experiences and views.  If you have SPMS – do you feel the change from RRMS has changed your experience with MS?

Love and light,