Wednesday, 18 April 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.

PS. The goofy things you randomly find and go "Bingo!", when out shopping... I saw one of these soft rubber spiked squeeze ball-thingies, and thought they'd be perfect for my #MS "Dizzy Fingers", especially to help me warm-up for guitaring... it works a treat for me! Yay! It doesn't change the symptoms, it just helps warm-up the flexibility in my hands... helps for my typing too :)

Updated: March 2018... catch-22... I "mislaid" (read 'lost'!) my squeeze ball at a gig! D'OH!

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 I answered about playing music, years' ago

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Mood Swings

MS can cause Moodiness and Mood Swings. Emotions can be all over the place and can quickly change at a moment's notice. Irrational... from laughing to crying at the drop of a hat!

This, combined with my bi-polar depression, can be a rough mix sometimes - it can be a real balancing act some days.
It's nothing intentional or personal, I assure you!
It makes me feel like such a jerk or idiot afterwards - it can be really embarrassing as well.

Mood Swings
"MS can also cause unbalanced expressions of sadness or happiness. Your emotional responses can even be scrambled, causing you to laugh at sad news or cry at something funny. Many patients report a worsening of their emotional symptoms during an MS attack. You can have mood swings, no matter how severe your MS is." (Source)
Some people with MS experience swings in their mood which are sometimes triggered by something specific, but they can also happen without any rhyme or reason. Sometimes these mood swings are a reaction to having MS, but in other instances they can be caused by MS affecting the part of the brain associated with mood and behaviour. These mood swings are hard to live with, and can be extremely distressing to both the person experiencing them and their loved ones. Those of us living with MS can be more easily worn out, both physically and emotionally.

Another symptom that can look a lot like mood swings is called pseudobulbar affect. This is when a person laughs or cries inappropriately. These emotional outbursts happen even though the person isn’t feeling particularly happy or sad.

Here's a few tips that may help, and I hope you will all share your experiences with one another:
  • If your loved one is agitated, angry, or even aggressive take a step back and try to identify any potential triggers. Is there something else going on that could be causing their behaviour? Are they uncomfortable, in pain, on a new medication, or could they even have an infection (such as a urinary tract infection)?Are they in an overwhelming or overly stimulating environment?
  • Try to focus on the person’s emotions, not necessarily the facts. Arguing the content of what their saying can be counter productive, instead acknowledge the feelings that they are trying to express - regardless of whether you think they are appropriate or not.
  • Move to a calmer environment, turn off the TV, go to a quiet area, and try to promote relaxation if possible.
  • If behaviour ever escalates take a step back and give the person their space.
  • Listen to the person’s frustration, try to understand where it is coming from.
  • Provide reassurance, let them know that you are there for them.
  • Validate their feelings, let them know how they feel matters to you.
  • Take a walk or engage the person in an activity that will help distract and calm them if possible.
  • Resist the urge to engage. Avoid yelling, criticizing, or arguing even if you feel that the behaviour is irrational.

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Tuesday, 3 April 2018

The Spoon Theory

The Spoon Theory
by Christine Miserandino
(Mal: This "Spoon Theory" concept helped me to understand why so many people with chronic illness refer to themselves as "Spoonies".)

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

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