Monday 23 January 2017

deeply, deeply odd

The title for this post came from the recurring phrase I used last week when having my first go at Intermittent Self Catheterisation (ISC).

And it really was. And continues to be so. In abstract, the idea that something THAT long (40cm - that’s FORTY CENTIMETRES) is going into an aperture which has been, up until this point, a strictly ONE WAY deal still boggles the mind.

Men have the advantage that they only have a single point of entry which is visible externally. Women have two possibles, and they have to locate the correct path blind.

Is it helping? Hard to say. I still don't think I'm doing it entirely correctly every time, plus I don't think I fully trust it yet. But it's pretty weird when I see the amounts which have come out when previously I would have said that I was empty.

This is all TMI but I guess the point of putting this out there is to let people know that it's really not that scary.

And like everything to do with this bizarro disease, I should say that this is not necessarily the way it's going to go for every person with MS - maybe I could've avoided this by committing more to my Bladder Retraining Programme or by not going down the whole bladder-controlling medication route. Who knows.

But if it works and is as life-enhancing / changing as it seems like it could be, then it will be worth a few minutes of weirdness.

[A few days after writing all of the above]

I’ve now been doing this a couple of times a day for around a week and it’s one of the truisms of life with MS (or any kind of lifelong condition and/or situation), but it’s amazing how quickly humans can adapt.

I don’t think I’ve necessarily got it all down - if I step outside myself and think about it too much, it IS still a bit weird. But aside from a tiny micro-moment of discomfort and some logistical issues (how to fit it into ‘normal’ life, how to coordinate / juggle all the required elements), it’s getting easier.

As I said above, bladder issues can be a common aspect of living with MS but it doesn’t necessarily follow that you’ll one day find yourself sticking a tube down your dinkle / up your la la.

(As an aside, because ‘la la’ is the chosen gynaecological euphemism in our house, Little Miss D thought that when we went to see the new Ryan Gosling / Emma Stone film it was all about lady parts)
And anyway, nothing can be as weird as what went down in Washington a few days ago! Oy.

Wednesday 11 January 2017

a new one just begun

The image above is from the not-really resolutions that me and the divine Mrs. D made last year. We uncovered them during our New Year's celebrations a couple of weeks ago.

If you can read my serial-killer scrawl, I think that we can agree that the second and third items on the list ("I'm going to be more... positive" and "I'm going to be less... of an arse") were not exactly met.

And on first glance, my initial reaction to the top one ("I'm going to give up... less often") was disappointment at another failed goal. But looking at it again and thinking back, I don't think this was the case.

I stuck it out at work in a demoralising and HORRIBLE situation and kept keeping on submitting the same piece of work for NINE MONTHS - taking the frustrations, knock-backs and feedback on the chin. No, it didn't work out but when the time came I left on my terms.

With support I'm sticking with the OMS lifestyle - which is genuinely not a hardship. I'm currently on a 101-day unbroken streak of meditation - I'm seeing it as my version of Pokemon Go or something; I can't lose my High Score now! And food is more interesting now (although admittedly more expensive) - this quote is something I keep coming back to, from the Overcoming Multiple Sclerosis book:
I don't understand why asking people to eat a well-balanced vegetarian diet is considered drastic, while it is medically conservative to cut people open and put them on cholesterol-lowering drugs for the rest of their lives.

More than anything, I feel mentally clearer and more with-it generally.

Which is handy, because I received a letter in the post a couple of weeks before Christmas saying that my Disability Living Allowance (DLA) was finishing and that I would have to apply for Personal Independence Payment (PIP) - you don't get moved over automatically. So for the last couple of weeks I've been filling out my application.

I don't know if you have filled out one of these forms, but it is single-handedly one of the most depressing things I've ever had to do. Speaking from the viewpoint of something as personal and infinitely variable as MS, you have to put yourself in the position of you on your very worst days - toilet problems, personal care worries, mobility issues, the full nine yards.

To say that it isn't fun in any way would be an understatement.

But at least I had a lot of "issues" over the festive break so a lot of it was fresh in my mind - #feelingblessed #luckyme.

Don't get me wrong, we had a BRILLIANT Christmas - I'd say it was in the Top Three, alongside Christmases where I got this and this.

But there were far too many times when issues to do with my mobility and my bladder just got in the way a little bit too much.

Later this week I'm getting a home visit from the nurse who'll be introducing me to the world of intermittent self-catheterisation (as my brother said, some people pay good money for this sort of thing).

And despite a bit of mild belly-aching last time, I'm genuinely hopeful that this will be a really positive thing - thanks for the supportive comments (and the email, Patrick).