February 2025
MS Stress
23/02/25 14:06
Went to the wonderful Walton Centre for a meeting with a couple of the MS Nurses a week or so ago. All in all it was an interesting appointment.
My MS has been steady for the last few years, but over the last few weeks I have been suffering from my first relapse since my initial two relapses, which was back when I was diagnosed.
For those of you who don’t know, a ‘relapse’ is not (as it sounds) a return to any earlier symptoms but relates to something different—a symptom that you haven’t had before. The current relapse is an almost total numbness of the lower torso from above the belly button height and all around from back to front. It is also partially down my left leg. The attack of course is to my nerves (the myelin coating) on the spine or in the brain (or both) in specific areas. In this case it appears to be nerves near the base of the spine.
It’s weird not feeling the syringe with the Copaxone going in to the belly. Whilst not feeling the injection sounds quite nice, it’s not exactly, is it? Not feeling your torso is disorientating at the moment and has other issues relating to it. I am hopeful, as in the previous attacks, that most of the feeling will come back over the next few weeks; but the return of the RRMS has left me pretty stressed to be honest.
One thing that came up in discussion was the issue I have with fatigue when standing up for over an hour or so (eg at a gig). It created much hilarity when the nurse suggested that one of the best ways to reduce the fatigue was to piss myself. I was quite taken aback by this suggestion until after some requests for repetition I found it was an accent issue and she’d actually meant ‘pace’. Much better idea I reckon.
They’ve written a letter for me which I hope to use to apply for an Access Card to help my when attending events (with better access to toilets and seats etc). I’d had to put off going to the Lottery Winners gig at Manchester Academy between Xmas and New Year because I was too worried that I wouldn’t find a place to sit (I was using a walking stick at the time). I was gutted at missing it but it was the correct decision at the time. We shall see whether I, a) get one and b) if it’s worth getting.
Another discussion was around possibly changing my medication from the three times a week Copaxone (glatiramer acetate) injections to daily tablets (Aubagio—terifluomide). When I first went for the injections it was partly due to the worry about purposely lowering your white blood cell count and also requiring regularly blood testing (not required with the Copaxone treatment). Given I am currently attacking myself again lowering the White Blood Cells doesn’t seem as bad an idea at all. The nurse is to call me back over the next few weeks and I am currently minded to opt for the change to Aubagio after the next batch of Copaxone is completed. We shall see.
Watch this space. In the meantime though I need to take some deep, deep breaths and try to stress less in general.
My MS has been steady for the last few years, but over the last few weeks I have been suffering from my first relapse since my initial two relapses, which was back when I was diagnosed.
For those of you who don’t know, a ‘relapse’ is not (as it sounds) a return to any earlier symptoms but relates to something different—a symptom that you haven’t had before. The current relapse is an almost total numbness of the lower torso from above the belly button height and all around from back to front. It is also partially down my left leg. The attack of course is to my nerves (the myelin coating) on the spine or in the brain (or both) in specific areas. In this case it appears to be nerves near the base of the spine.
It’s weird not feeling the syringe with the Copaxone going in to the belly. Whilst not feeling the injection sounds quite nice, it’s not exactly, is it? Not feeling your torso is disorientating at the moment and has other issues relating to it. I am hopeful, as in the previous attacks, that most of the feeling will come back over the next few weeks; but the return of the RRMS has left me pretty stressed to be honest.
One thing that came up in discussion was the issue I have with fatigue when standing up for over an hour or so (eg at a gig). It created much hilarity when the nurse suggested that one of the best ways to reduce the fatigue was to piss myself. I was quite taken aback by this suggestion until after some requests for repetition I found it was an accent issue and she’d actually meant ‘pace’. Much better idea I reckon.
They’ve written a letter for me which I hope to use to apply for an Access Card to help my when attending events (with better access to toilets and seats etc). I’d had to put off going to the Lottery Winners gig at Manchester Academy between Xmas and New Year because I was too worried that I wouldn’t find a place to sit (I was using a walking stick at the time). I was gutted at missing it but it was the correct decision at the time. We shall see whether I, a) get one and b) if it’s worth getting.
Another discussion was around possibly changing my medication from the three times a week Copaxone (glatiramer acetate) injections to daily tablets (Aubagio—terifluomide). When I first went for the injections it was partly due to the worry about purposely lowering your white blood cell count and also requiring regularly blood testing (not required with the Copaxone treatment). Given I am currently attacking myself again lowering the White Blood Cells doesn’t seem as bad an idea at all. The nurse is to call me back over the next few weeks and I am currently minded to opt for the change to Aubagio after the next batch of Copaxone is completed. We shall see.
Watch this space. In the meantime though I need to take some deep, deep breaths and try to stress less in general.
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