Wednesday, 21 February 2018

MS & Guitar?

Mal "in the bliss", playing with "Pengopuss" jazz quintet in late 2016... and my great amp.

NOTE: This is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time.

21 February 2018

I have decided to rejoin our Jazz band "Pengopuss", playing guitar - but only on a part-time "when-I-am-able-to" basis.

Nothing has changed for me, MS- or health-wise.

Basically - I miss it all too much! The last five months of not playing has felt wholly unnatural to me, to be honest. The last time I sat-in with them (six weeks ago), it all felt quite normal and readily-adaptable for me, as a player. In other words - it felt good!

Thankfully - Pengopuss happily and readily said yes!

Mine would be a complimentary playing role only [playing with/alongside the new keyboard player, Kalyan], and only when I'm able to. I am definitely NOT replacing Kaylan at all - playing with/alongside him will cause me less stress playing, and help me play better and overplay a lot less.

If I'm having a day when I cannot play, the band can still function efficiently without me, thanks to Kaylan.

Note: I do not want to get paid for any of this, as I'm only doing it for myself. Honestly and seriously.

Plus the social interaction side of it is a huge positive... well, I feel isolated a lot, otherwise.

I'm already learnt the five new songs they are doing now, in just 2 days - yay!

I'm looking forward to this new step forward on my MS journey.

15 September 2017

I have come to one of the hardest decisions of my life, in that I am retiring from performing and playing guitar in a live setting.
  • My MS hands prohibit me from playing guitar well, consistently, to my satisfaction.
  • I am unable to physically play what I feel I can play. It's both co-ordination and competency issues, due to the MS.
  • Sitting down to play has become quite restrictive for me.
  • The MS is causing me major lapses in concentration and memory loss, resulting in too many unintentional mistakes - it's embarrassing!
As I said on 21 April 2017, "It's getting harder for me... not that anything physically has changed, I'm just finding it more and more awkward... to keep this pretence 'that I can play OK' up, I think... playing is really hard, and I'm finding it hard that I'm finding it hard, if that makes sense?"

It's a tough decision... it's finally time for me to pull up stumps from playing guitar, but the band doesn't want me to stop (bless them!)? It's all pretty confusing for me at the moment.

But yes, I have retired from playing in our jazz quintet, Pengopuss. I will play the next 2 or 3 gigs with them (last gig was November 2017), and will remain to help their transition with a new player. I'll stay to help out with their PA sound and lighting issues as well. It's definitely not one of these 'musical differences' thing! lol.

I've been playing 'professionally' since 1985... it's not easy to let that go. But I want whats' best for the band... catch-22.

Believe me, I'd love to keep playing... I'm just not convinced that I am physically able to keep playing guitar competently or consistently - that's the issue.

Even sitting at home, strumming along to my beloved Beatles - I am finding what has always come naturally to me, has become a real clumsy struggle. Practise at home for me last night resulted in blood all over the fretboard of the guitar (a great rock'n'roll look, tho! lol), simply because I couldn't feel the cut on my knuckle, caused by MS-led sloppy playing.

Not that anything has changed radically with my MS symptoms, but slowly, very gradually, my hands and fingers are becoming more permanently numb all the time.

I don't want to let people down, but I just realistically think I can't do this guitar thing competently any more. And that is a very "cut to the quick" decision for me - affects my psyche.

The catch-22 is... I am still able to play bass guitar quite easily and well... I can still 'groove'! Maybe it's the fatter stings, I think? Anyway, I'm a bass player by 'trade'... it comes much more easily to me than other instruments, to be honest.

Driving a car is still OK for me at the moment, but I know eventually I will have to make a sensible decision about that as well. This just means I won't be able to get to gigs etc as easily. Catch-22.

Anyways... I knew this time would come... doesn't make it any easier, tho.

NB. Original Post...

When it comes to playing guitar with my MS, it's this 'adapting' thing... I just 'do it', simply because I've been playing for so many years, I think. Playing guitar is a challenge for me, let's admit it. But I can do it, albeit pretty clumsily. It's hard to describe, but it's like playing by rote... my brain tells my left-fingers how to co-ordinate and finger a chord/play a series of notes, but the fingers don't always land exactly where they're supposed to... from years of playing, my fingers kind-of automatically know where they should go! That's the 'playing by rote' bit, I think.

Thankfully, my left-hand (the chord/note fingering hand) doesn't feel too bad (most of the time), so I'm able to finger chords and notes reasonably OK (not as well as I'd wish, but well... it's this 'adapting' thing). It's my right picking hand that can be an effort most of the time - just holding the pick and trying to keep a steady 'feel' going can be a challenge. But I can do it (hell, I've been hacking my way thru things for such a long time, it's a good habit, I suppose!) - which makes me feel satisfied... just more of that subconscious adapting, I guess. I've always been a rhythm player for years, anyways - must just be subconscious habit, I thin?  (It's hard to explain the inexplicable).

Henry, our double-bass player, said to me once, "I don't know how you do it..." I had to honestly reply, "I don't know, either!" It's a bit of a mystery, really. I think it's just after playing for so many years, the chord shapes and rhythm strumming patterns just come almost automatically (albeit clumsily, somedays).

Hot humid conditions slowly render my playing hands totally numb and useless. I had this experience (a brand new experience, actually!) at a Pengopuss gig in March. Symptoms developed as the heat slowly increased during the afternoon indoors' gig. First set - fine. Second set - I had to sit down (I felt a little 'wobbly' on my feet), and my hands were starting to feel less co-operative, and I noticed it harder to play fluidly and consistently. Third set - I couldn't feel my fingers and hands at all! It was so frustrating - but there was nothing I could do! The chords and strumming was still coming (albeit automatically), but everything felt so sluggish for me, playing-wise.

I forgot to take my small fan, as part of my standard gig-bag. But I'm also thinking of adding some instant cooling packs as well - just in case it happens to me like that again, in the future. Maybe a small esky with some frozen ice packs wrapped in an old towel during breaks, as part of my gig-bag, also? Well, if needs be...

I am very thankful to my Pengopuss jazz cohorts, for allowing me the privilege of continuing to play with them. We had a few rehearsals, before we performed at a private function in Bathurst, the day before NYE (2016). Because the numbness was relatively less that night, I was able to (albeit awkwardly) play guitar - tho I had to gaffa-tape a pick to my right thumb, so I could play! I could barely feel the strings under my fingertips as I played, but it worked well for us all. Thanks guys... I honestly thought that it might be the very last time I ever perform live again!

It's frustrating that I have to miss the occasional jazz quintet rehearsal, simply due to hot weather making my hands feel like rubber! Makes it tough to hold - let alone play - guitar. I hate feeling as though I'm letting the other guys in Pengopuss down, but there's nothing I can do about it (which is equally frustrating).

Catch-22... the next day, my hands were comparatively fine. Go figure...

I think one of the most frustrating things for me, when it comes to playing guitar, is - in the weeks leading up to when my MS first kicked-in - I was actually playing probably the best I ever have! Things I was practising on at home in private was truly boundary-pushing for me as a player... really working on solos and different modes and new things for me - and feeling really refreshed as a player as a result. Now, I'm no shit-hot player (not at all)... I'm just an old hack who knows how to adapt when it comes to playing different styles, after doing it for years and years - that's the "playing by rote" thing. Unfortunately - all of that advancing-playing has ground to a shuddering halt now. Thanks, MS...

(21 April 2017) It's getting harder for me... not that anything physically has changed, I'm just finding it more and more awkward... to keep this pretence 'that I can play OK' up, I think... playing is really hard, and I'm finding it hard that I'm finding it hard, if that makes sense?

Blog post: Some questions answered about playing music, years' ago

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MS & Isolation

One of the more unexpected things I have discovered since becoming disabled due to MS (and two other chronic diseases), is the sense of isolation I often experience.

Most people I am in contact with either have a partner/spouse, or family, or even a carer, to oversee their well-being. Someone they can intimately interact with, who appreciate the frustrating nuances of their daily-changeable situation. And they can journey through it all together. (And I'm very happy for them).

I have no-one. I am doing this totally on my own.

And compared to others, I feel very isolated, in this situation.

I am happy being relationally-single, as I would not want to live with me while I'm suffering from all the conditions I have, either! I wouldn't wish that on anyone - I do not want to put anyone else through what I am experiencing daily. It's cost me two long-term relationships already. That's not what I'm talking about.

I have a few people who check-in on me now and again (and, for which, I am eternally grateful!), but as far as relational immediacy, I'm doing it tough, I have to admit.

I find it awkward to continue some of my great online friendships as often as I like, because almost everybody seems to have a 'significant other'/carer in their life - and I don't quite identify with that - sometimes it makes me feel kind-of uncomfortable relating with them, inexplicably. I am honestly very happy for them. Maybe it's jealousy? I don't know... I don't think that explains it.

I'm not sure if I know how to explain the inexplicable.

I know it sounds obvious... but I didn't ask for this health condition. It's not my fault, and I have to make-do and deal with what I have with what I've got.

Some days are better than others. Some days I'm fine with it all. Other days, it doesn't come easily to me anymore.

I honestly don't want to / deliberately try to offend anyone - but somedays, I just don't give a shit anymore, tbh.

I'm finding it tough that I'm finding it tough. I think that's what I'm trying to say, as obvious as it sounds. I just need to say it.

Article: The Isolating Loneliness of Chronic Pain & Invisible Illness

Peas be with ewe 

What does my MS feel like for me?

Mal's Current MS Symptoms

NB. Every single person with MS will experience a different set of symptoms - no two MS-ers are the same!

NB. This post is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time. Yes, some days are better than others for me - that's very frustrating for me and others to deal with.

My main MS symptoms:
  • Hand Numbness
  • Foot Drop/Walking issues
  • Loss of Balance
  • Fatigue
  • Insomnia
  • Depression
  • Tinnitus
  • Nausea
My secondary symptoms:
  • Changeable mood
  • The dizzies
  • Brain Fog
  • Brain zaps
  • Slight hand tremors
  • Itchiness
  • Leg twitches
▶◯▶ Try picking-up a wet cake of soap whilst wearing a wet plastic oven-mitt - you get the idea. That's about the best way to describe how my MS is affecting me in my hands.

It's not a loss of muscle strength, grip, or motor skills. It's not painful. It's this strange pins'n'needles/tingling/numbness makes it a weird feeling trying to... pick-up a dropped pen off the floor... pick-up soap in the shower... putting a key in a lock... typing... pointing, scrolling and double-clicking a mouse... doing up shirt buttons... writing... tying shoelaces... pegging washing to a clothesline... sewing (hand and machine... tho I haven't tried, yet!)... turning the pages of a book... getting a pill out of a bottle... picking up a dropped credit card/piece of paper off the floor... wiping my butt (lol)... I have to concentrate when using a sharp knife, like when chopping veggies etc, just ordinary day-to-day things like that. Just general clumsiness (more than normal, that is). I have the sensation of hot and cold (thankfully), but the effects make things feel kinda "slippery" or "spongy" to my touch (it's weird to try to explain it). Medically, it's known as "Paresthesia".
  • Pins and needles
  • Numbness
  • Tingling
  • Buzzing
  • Vibrating
  • Throbbing
  • Slippery
  • Spongy
Vary rarely, I also experience slight hand tremors... and slight leg twitches (when I first lay down to sleep) - but I've been aware of those for years.

I also occasionally get unexpected spots of itchiness, for no apparent reason.

Playing guitar with MS is a challenge, let's admit it. But I'll soldier on, for as long as I can.

▶◯▶ My MS is also slightly affecting my left foot (about 1 step in 10, my left foot doesn't 'rise' as well as it should)... sometimes, I seem to "roll" as I walk! It's called "foot drop". I'll use a walking stick sometimes now, for a longer walk - "just in case..."

▶◯▶ My sense of balance is a little bit out as well... if I stand still, I will sway very slightly (more than normal, that is!) No, I am not drunk. It's just another of my MS symptoms that I've become more aware of, as is my neurological team too. Now, when I'm standing to play guitar, I have a chair handy, just-in-case... it's the same reason why I'll use a walking stick, during a longer walk - "just in case."

▶◯▶ Sometimes, I feel extremely fatigued... the sort of mental and physical tiredness / weariness / exhaustion that doesn't necessarily go away after a good sleep. This often stops me from participating in life! Not always sleeping well doesn't help, either.

▶◯▶ Imagine being so depressed, that you cannot practically function... that's one of my MS symptoms. In association with my pre-existing Bi-Polar Depression, this often prevents me from participating in life, and in things that would normally bring me joy and pleasure. And - depression is not just "feeling sad"...

▶◯▶ The dizzies / the spins are different again... as are the occasional "brain fogs" and "brain zaps".

▶◯▶ My mood can change at the drop of a hat (more than normal, that is!), plus my bouts of depression seem a little more ramped-up and intense, from time to time. I can't always stop/prevent it, nor always pin-point a 'trigger'.

▶◯▶ Lately, I've realised my Tinnitus (ringing/buzzing in the ears) is much more audibly noticeable some days, especially when I am very tired. Some certain frequencies sometimes actually hurt (and not loud ones!) This is not all due to loud music exposure, either.

▶◯▶ I've noticed a weird random overwhelming sense of nausea occasionally, almost (and sometimes!) to the point of vomiting... but there is no headache or dizziness involved. It's a rare MS symptom, apparently - yay me!

▶◯▶ For me, finding a sense of balance feels harder some days more than others. I'm not talking about balancing life and work priorities - we all deal with those. It's finding a positive balance between all my varied other health issues.

▶◯▶ NOTE: My MS symptoms will randomly come-and-go over my lifetime. It's called "Relapse and Remission". Plus... yes, it SUCKS having to be dependant on medication for the rest of my life.

▶◯▶  MS Lifestyle Considerations
              MS and Heat 

(Originally posted: 25 January 2017):

When I was in hospital for five days (back in early December 2017), I was on high-level steroids (to reduce the auto-immune symptoms), including a "lumbar puncture" (no bloody fun, I assure you!). My symptoms at that time were: My whole right arm, from elbow to hand, was quite numb and useless. It affected me all the up to my elbow (on my right arm), my left hand/fingertips, across my torso-front (chest), the inside of both knees, and the tips of my toes. It even affected the way I walked - the inner-knee numbness made me roll like an old sailor a bit, when I walked - that made me laff!

Thank goodness that now (c. 6 weeks later) I'm only experiencing pins and needles in both my hands. Everything else cleared away, after the steroid treatment.
So now, even typing can be a challenge! Typos are common - like right now, using my laptop (I don't have a smartphone or handheld device) - thank goodness for spellcheckers (which find most of my "dizzy-fingers" typos!)

I am adapting to it reasonably well.

It's all very frustrating, but I'm not depressed or unsettled by it all, to be honest. That surprises me, but I'm fully aware that there are people with this condition who have it a LOT worse off than I ever will!

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