Remittance

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Two years ago my MS felt out of control.

New symptoms were appearing every few weeks and, by late 2015, my neurological consultant had accelerated me onto a course of “Campath” chemotherapy.

I had a second dose in October 2016.

It had become difficult to separate the side-effects of the drug from further MS activity but, in summary, it’d be fair to say that my health had been patchy over the intervening 12 months.

 

When first diagnosed, of course the hope was that my variant of the condition would be towards the less aggressive end of the scale. This basically translates into a “relapsing-remitting” type (i.e. one that dissipates (or remits) between bouts (or relapses)), right at the benign end of the spectrum.

The very best possible scenario would be that my MS actually remits entirely. There have been cases where patients diagnosed with MS have gone on to live long and healthy lives with no further interference from the condition at all, but the fact that I had already suffered so many relapses, and had so many visible ‘lesions’ on my brain and spine to show for them, makes this less likely.

The law of averages dictates that 85% of newly diagnosed patient in their 30s (i.e. me) will have one of those relapsing-remitting types, likely to appear, then diminish, over a period of years. And I’m afraid that the most likely overall trajectory is one of deterioration: 65% of patients become “secondary progressive” within 15 years of diagnosis – this basically translates as a “sustained build up of disability” with little or no recovery between relapses.

My relationship with my MS is now one of seeking to avoid this mathematical probability; to avoid the occurrence of relapses; and to rejoice as much as possible in the fact that I’m not there yet. And, of course, fingers crossed, might never be.

 

I don’t know the exact reason why, but, June 2017, I’m certainly feeling much, much “better”. My MS symptoms feel like no more than murmurs, and I’m recovering from the minor bugs of everyday life within normal timeframes, rather suffering from them for weeks at a time.

Statistically, this is probably no more than where I should be: a period of remittance in between relapses. But I can’t help but be more optimistic than that: I’ve now got 2 bouts of chemotherapy under my belt; and have now been adhering to a much healthier regimes of MS-Diet and careful sleep patterns for 30 months. Although I remain mindful to the false dawns of ‘hope’, I can’t deny myself the excitement of feeling so very improved:

I would judge that I have been as healthy as I can remember for perhaps 8 or 9 years.

I am pushing niggles to the side – and I’ve been out cycling; working full-time; painting garden fences; and mowing the lawn. All things I have stopped taking for granted.

I’m lining up big cycling plans for the summer and have been getting myself ready, body and bike, for adventures to come.

 

I gritted my teeth when a stress fracture in my right foot took 6 weeks to heal; and I continue to do so now with an issue with my right knee. Frustratingly the pain there is being caused by a titanium pin inserted there many years ago- the surgeon is reluctant to do anything whilst my post-chemo immune system remains low: my latest blood results still show my ‘lymphocytes’ (read: infection killers) struggling at 0.5 against a ‘normal’ minimum of 2.

So I ignore my arthritis, cope with my grumbling optical neuritis and aim my bike at the horizon. As fast as I can.

 

65%. 15 years.

 

I chase more time. I chase life, perhaps always thinking that I might find it at the top of the next hill.

I feel pretty tired today but I’m planning a quick spin at lunch.

Despite the drizzling rain, I don’t want to risk missing it.

 

<< drink them in, for the gifts of life are why we are all here>>

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4 thoughts on “Remittance

  1. I’m not sure if one of the aims with your blog is to inspire other people living with on-going illness, but that is always the effect is has on me. Thank you 🙂

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    • That’s a very nice comment- thank you. To be honest, I’m just pleasantly surprised whenever I hear that some one else has taken the time to read anything I’ve posted. Best wishes anyway

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  2. Great post. I am going for round 2 in August as well but in a middle of a relapse. Could you share what ms diet do you follow, is it any of the known ones and also what you think is a healthy sleep pattern?

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  3. Hi Voodoo, I don’t want to sound as though I’m any sort of an expert – I’m just muddling through as best I can like the rest of us. However, I am learning to get better at ‘listening’ to my own MS. Much of it is still very much out of my control – but my condition feels infinitely more ‘stable’ than it has been. The most significant things I now avoid are late nights; situations that involve a lot of standing up; and alcohol- all of which are almost immediate triggers for me. My version of a “healthy sleep pattern” is a consistent one where I never hesitant to go to bed when I need to (however early that might be!) I am also pretty disciplined about following my own MS-diet… although I do not feel any immediate correlation between diet and my MS, I am motivated to pursue for the long-term benefits. I started off following a derivation of the “Swank Diet” – but I’ve now tweaked this, and can summarise my version as avoiding all junk/processed foods; dairy; and all foods that are high in saturated fats (essentially this means no red meat)- I also consume a lot of linseed oil, and take Vitamin D during the winter months. I make a conscious effort to eat as much vitamin-rich fruit and veg as possible. I do think that reducing my caffeine intake might well improve some of the symptoms I suffer from, but, at the moment, I still ring-fence coffee as one luxury I can’t do without!

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