But I Can’t Talk About it…

 

shh_by_zaratops
Shh by Zaratops on Deviant Art

So…I’m stuck. Stuck because I feel there’s a gag order on me. I’m stuck because I don’t know what protocol I should be following.  Advice from those who know me well is say little. Keep quiet.  Don’t make waves because consequences are real.  It goes against who I am. If I take a path, and walk it, I do it not only for me, but to share with others who might benefit from my story. If it was just for me, well I wouldn’t likely do anything. I don’t mind standing alone, so long as someone else can use what I am going through to help them. So I know that being quiet is not really my thing. I’m also not one to stand on a soapbox and preach to the masses. That isn’t really my style either.  My style… is this… if someone asks, I will answer to my experience and my truth. I will not evade the questions. I accept that actions and answers have consequences.

I am not doing anything wrong or illegal. I’m falling into a grey area where it’s legal, but with severe stigma, misinformation, fear, and misunderstanding. There are two sides to the same coin, and both sides need to be part of the same conversation. I am part of the revolution that is happening right now.

Thursday I start the process of being evaluated for a wheelchair for MS. My legs are failing. Not in weakness, not in numbness, but in spasticity. If I want to leave the house, I need something to be able to do things again and not worry about pain. My legs spasm and tighten at a very short distance. Then they drag, and although they are not yet completely giving out (it’s starting to happen where the searing spasm hits and the leg refuses to bear weight, but it’s still uncommon,) I am losing the ability to lift my legs to take that next step, and what starts out as a decent walk becomes a slow zombie shuffle very quickly. I have to judge everything by how much walking is involved and extensively plan my routes based on benches, and rest points, and what if there’s nothing in between where I want/need to go and where I start. I push through and pay for it.  My independence is shrinking. I am scrappy enough that barriers don’t really get me down, they are just things I have to work around and find solutions to – even if it sometimes means fighting impossible odds, or “The Man” to get something that will benefit not only me, but others like me. (Example: I will probably have to get my employer to install power assisted doors at work because the only doors that are power assisted are the washrooms, but not the door to access those washrooms – what the hell is up with that? So I will fight that battle, but I will still show up every day and figure out how to work around that barrier until it’s fixed.)

So here’s what I think I am going to do. I will live like I always have. I won’t talk about treatments and equipment and such. It just won’t be chatty about it except with the people who have my back and know about my situation. I will answer any question asked by anyone who is curious or just wants to know because the quickest way to end stigma and fear is by being open and honest. I have never been shy when people ask about the cane, or about MS or about anything I’m going through. I accept the consequences of sharing my story because it’s really the only way to break down barriers, quell fear and shed light on what’s really a dark personal experience.

Chasing My Own Shadow

So again I disappeared from here, from trying to redefine myself, and fell back into the obsessing about getting back to work.  Yet I can’t read a book that requires more thought to follow than light memoirs  and entertaining stuff that I used to chew through in an hour or two at the most – it now takes weeks to get through. It makes me hate reading at all. Yet if I can’t read and comprehend complex things there is no getting back to my job.

Today was a space case day where I ruined a project…don’t know how… it just happened but it meant tearing out work and now I’ll have to start over. I picked up an old project only to realize I have to re-read the material I started with to figure out what it is that I was originally trying to accomplish.  I’m either going to start over or quit.  Probably quit. I look around my house and it’s nothing but projects started but never finished. Ideas that had… and stayed with for a breath and discarded when another shiny caught my eye.

So my choice start a new something… trying to find the new me. Haunted by the precedent of my former self. I can’t live up to the bar I set before I crashed to MS and burnout. Yup – it wasn’t just one thing that lead to my collapse. It was two – if I choose to believe my psychologist.  Yes MS physically incapacitated me, but I was doing the job of four people at work before it all came crashing down, and my psychologist tells me that there is clearly evidence of burnout as well.

The thing is. I don’t want to be off for any longer than what has already been assigned. I’m done with sitting around me house finding hobbies and things that to me feel like fake productivity. It feels like empty gestures. Like I’m finding nothing but a ghost of me. I’m not ready to retire. I don’t want to stop working.

So I played the if money were no object – and I could do anything, be anything or be anywhere – what would make me the happiest person on earth. Part of that answer is do my job… the one where I deal with bureaucratic bullshit, and working to build software with my team of really smart cool people just doing the job we were hired to do. I know I need work…or a winterized camper.   If I didn’t have work I need wilderness. I need to be lost in a forest with campfires and water and a small house – and food cooked over fire.  Trees can’t happen right now…but work can… but not just yet.

 

Echoes of a Past Friend…Presently Missing and Missed

 

This is simple…and complicated like most meaningful things in life. My sister introduced me to this cover of Simon & Garfunkle’s Sound of Silence. Like all good songs this particular version unleashed so many emotions and memories, and raised a spectre of something that I was only partially aware of how much my heart ached for a missing person in my present. Ghosts of my dear friend, who is very much alive, but no matter how many ways I try to find him to make contact again – it’s almost impossible to determine if what I’ve managed to dig up is a current or past address, and all methods I had previously to reach out – these are no longer available. I know it’s not because he’s actively shuttered contact. His circumstances the last time I heard from him were difficult, and his way of life from childhood to now has been to leave as little of a footprint in the public eye as possible… unlisted phone numbers, addresses, no social media whatsoever partly due to economics, and partly due to necessity… means finding scraps of wherever he may be exceedingly difficult without hiring someone to find him for me.  I have enough to know he’s alive and well.

The reason we lost contact is simple… life…different paths… marriage…. moving to different parts of the country…. no one event that decided our fate…. just the ebb and flow of time… it’s not that the friendship is done…it’s just been paused.

This song though… the first time I really listened to it – which is the second time I listened to it. The first time I was speechless, and haunted by it, but i didn’t know why. Just a feeling in my chest that I knew something deeper was attached.  The second time though… I was transported by memory to my late teens early 20’s during college – my first stint, and just before my parent’s marriage imploded, and before my now ex moved back to the same city as me.  To late nights, and time spent in the company of the guy I’d known as my big brother from another mother – since I was 5 or 6 years old.  We never really spoke deeply  about our feelings, or the goings on in each of our homes, or anything, but it was that kind of comfortable friendship, that I was oblivious to the potential other direction it could have gone until much later in my life. It’s not a regret. If it was meant to be  it would have gone that way. What I do miss with such ferocity that it takes my breath away is that connection to someone else who was there, but not my blood who knows my past as much as I know his. Who grew up alongside me in that space in time – who I have wonderful memories of the time we used to escape our respective lives to spend time together never speaking of what it was we were escaping, but knowing that together we were okay.

He was into heavy metal, and while we were driving in his car to play air-hockey, or go to a movie, or go to class at college or whatever – he’d sing along to these songs, and his voice was exactly like the lead singer in this song… only, I don’t know if it was because he was self-conscious or shy or what, but it was a talent he shared with so few. I remember being mesmerized – in spite of not being a true metal fan – about the depth and range, talent and rawness he shared with me on those drives to everywhere and nowhere.

I realize now that what I miss most about the people who are no longer in my present but were very much loved and dear to me growing up is the friendship and the witness to the beginning parts of my story. I miss them because I was a part of their beginning too.

I’ve said this to a friend of mine recently – I am my family’s memory keeper. It takes very little to trigger memories of events, conversations, entire movie like scenes that I get to watch like reruns – beloved and not so loved – only multi-dimensional with scent and tactile sensory memories… like for a moment I’ve been transported back to exactly that space… and the cherished memories are harder than the harsh ones – because I walk away from that brief time vortex – aching for the person who I spent that piece of time with… for the part they played in making who I am today. It’s a sense of longing that takes me days to process. That in spite of so much chaos, so much strangeness there were these people who stood by me when I needed them and loved me and I loved them, and I miss them… I miss their presence. The memories aren’t just a thought or a byline in my life  – they make these people so real that when they end – I suddenly realize that today there’s a person shaped hole where they just aren’t – and it’s bittersweet because I cherish their past presence and know there’s a space in my present where they still belong.

 

 

Change and the Gift of Hope

This will be a rambling post. Usually the title strikes before the words flow, but today, like so many days before this, I am blank, empty, and vacant of thoughts, ideas. I have nothing to rail against. Nothing angsty that needs to find space. I am not content, but I am also not upset, or angry, or scared, or anything. I am not fighting myself, my disease, my family or fighting to get back to work. I have found an unexpected calm. I am not even  interested in overthinking this.

I am not in my usual winter depressive state. The side of me that reminds me constantly that I am not enough, can never be enough, am not doing enough, not trying hard enough is silent. I have made no changes in my medications for my mental health. I am on the same cocktail that I’ve been on for at least 15 years – so that voice has not been medicated away. It’s just silent. I really don’t care why, and I am certainly not going digging in my psyche to find out why after all these years it’s gone silent.

I’ve made some changes to the medications I am on for MS. About a month ago, I noticed that Modafinil (Provigil/Alertec) even at 200mg in the morning was doing absolutely nothing for my fatigue levels, and that I just wasn’t feeling all that mentally clear. Not only that one of the side effects is increased muscle spasms, and doing some digging around on quite a few forums the number of people who have said that the spasms were worse at night – violent flailing spasms that kept them awake – this gave me great pause because I haven’t slept in months (since October when it was prescribed) because of exactly this problem. I did phone the MS Clinic 4 times to say the shoulder spasms I was having were not being controlled by the Baclofen and Tizanidine combination that they prescribed – and not once did they catch that it could actually be Modafinil.  Any way I stopped taking Modafinil, and noticed – yes I am fatigued, but my mind is actually clearer.  Yes I have to nap some of the time – but an hour is usually enough – on really bad days it’s a bit longer.  I am no longer aggressively thirsty in the morning. The shoulder spasms at night are definitely lessening. It’s been slow – but now the massive arm thrashing spasms are really infrequent. The muscles still spasm from the actual spasticity present – when I focus on it I can ignore the pain and feel the ripple from shoulder to wrist like a snake moving up and down the arm. That’s the one thing about me and pain – unless it earth shatteringly awful – I can usually separate the experience of the pain portion and focus on what’s underneath to at least figure out what the actual problem is.  It’s a talent…. either that or it’s a sad commentary on how long I’ve dealt with pain… I’ll go with talent.

I have also decided to stop waiting for my doctors to tell me I can pursue the use of medical cannabis for the treatment of spasticity related to MS.  I am inherently a rule follower – I will push the boundaries of the rule, I will vehemently fight against arbitrary rules, unfair rules, rules that are only conveniently applied, cruel rules, bad rules etc., but other than that I am not that rebellious. I like structure. I like frameworks that allow individual freedom.  So as a rule follower – I was waiting for someone who is supposed to have my health in their interest say – ok – we’ve done everything that conventional medicine to this date has to offer – and it’s still not enough. It’s time to try a viable alternative. This did not happen. No what was actually said by both of my primary doctors and their teams was: There is nothing more we can do.

It’s not like that last sentence means an actual physical death in my case. I won’t lose my life.  It’s that my experience of my time here will be muted and restricted, and yes always coloured by pain somewhere, and it infuriated me that this was considered acceptable to my medical team. No referral to a pain clinic. No actual pain killers offered. (Wouldn’t matter – I would only take them under extreme and dire circumstances because I’d rather treat the underlying problem rather than just slap a mask on it)

So – I did what I had to do, and went through the process required to find a doctor willing to prescribe medical cannabis. I’m waiting on paperwork to be processed. The appointment with the doctor was eye-opening and hopeful. The doctor was actually excited and so happy to be able to help with the process because there are so many options available… and above all there is hope… hope that the right combination will give me some of my life back.  Instead of shutting me in a room with no windows, and no hope,  a door has been opened and this room has windows….

There is a chance to move forward and build a new me that still has MS, but maybe there is a way to balance work, rest, and leisure, and I can feel productive again. If anything, the biggest gift is hope.

 

Positive Thinking is Killing Me

 

Stay positive…

Don’t give in…

Don’t give up…

Happy, happy, joy, joy…

I just can’t.  I can’t feel it. I can’t fake it. I can’t even act it… which is different than faking,  but I can’t put my finger or find the words to  describe the fine line of difference between acting and faking… but there is a difference.

If I talk about what – pick your label for which condition you think is coming though today… Bipolar? Depression? Borderline Personality? MS and it’s brain stealing ways – the reality of it. The fact that right this minute I am being pulled under by whatever the fuck it is, I get told to look on the bright side, or stay positive, or fight the good fight, or don’t let it get you down, or make a list of everything you’re grateful for (which is a lot. I am grateful for so much of a lot of things… unexpected friendships forged stronger by sharing mucky experiences that parallel each other… who would have thought that so much awful could produce something so amazing… also the whole misery likes company… which is kind of a dark way to look at a really awesome friendship… ) and just focus on that.

The problem I am struggling with – the thing that is causing me the most discomfort is – I’ve done that. I worn that mask the “It’s only a flesh wound” mentality. The can do. Will do… which turned into must do, and struggling to do, and can’t do, to I can’t even, to I fucking just can’t at all. Which is where I am now.

“You look good – it can’t be that bad.”  I look good because that’s what I know how to do, it’s been what I’ve been trained to do from real small. I can’t just suddenly shed that mask because the reality is – if I showed how bad it is  – if I was actually able to do that – nobody actually wants to see that. No one – including me – wants to handle that amount of misery, pain, exhaustion – it’s true… the statement “You can’t handle the truth” is the truest thing that has ever been said.

We’re in this weird state – everyone is – where we believe that all we have to do is think good thoughts, law of attraction, positive thinking is the best thing to do. I’m not saying it isn’t helpful… but there’s a level of denial of what actually is, and I no longer know how to find the balance between this is really happening and trying to figure out hopeful goals, and believe all the positivity and my old attitude.

I used to be the poster child for how not to let a bad thing get you down… good soldier… keep trooping… and although I still believe we can’t give up, and we have to keep on getting up even when the only thing you want to do is stay down – get up…one more time… get up… I also figure, now, that there has to be room for really looking at a shitty situation and not trying to belittle this time and space with platitudes. It infuriates me that I’m expected to return to the person who thought she could out maneuver the horrible scary terrible disease and was every one’s rock of how to do chronic illness right… when really, honestly, I was doing everything in my power to not admit to myself that I was in trouble.

 

Lyrics to Terrible Thought:

A terrible thought has moved into my mind
Like an unwanted room-mate drunk on wine
It feeds on my happiness won’t pay the rent
I must take proper measures to evict it

A terrible thought has moved into my mind
A giant rat that’s nibbling on my pride
It’s tearing away my patience and my wit
I must take proper measures set a trap for it

What a terrible thought

I don’t care what you’ve done
I don’t care who you’ve won
I know in the end you’ll have your fun
But you can’t have it here
And I won’t let you steer
You know I don’t want you in my mind

What a terrible thought

I must stay calm you know and I must be clear
It’s gonna take a hundred thoughts to make this one disappear
A train like that could travel a soul for years
A terrible thought could have a terribly long career

what a terrible thought

What minds have you shredded
I bet they regretted
Having ever thought you up

Just look at you shine
Committing your crimes
I know I don’t want you in my mind

‘Cause you’re breaking my stride
You poisonous vine
You’re strangling me inside
You’re breaking my stride
You poisonous vine
You’re strangling me inside
You’re breaking my stride

What a terrible thought, What a terrible thought
What a terrible, terrible thought
What a terrible, terrible thought
What a terrible, ter–rible thought
what a terrible, ter–rible thought
what a terrible, ter–rible thought

(intro to spoken ending)

Songwriters
DANIELEWSKI/J.O.B./ELIZONDO

Read more:  Poe – Terrible Thought Lyrics | MetroLyrics

 

 

What if I Just Didn’t Get Up?

An object at rest tends to stay at rest

I don’ think that this is the depression talking. I got out of bed really late this morning. I didn’t sleep well Sunday night to Monday morning. I slept fine last night – I was woken up at 6ish with the spasms in my shoulder violently shaking the bed again, and I felt the same pulling that I feel in my left shoulder before the loss of control and the jerking starting in my right shoulder and down the bicep.  Thankfully, so far the right shoulder has not joined in on the jerking yet. Disappointment gripped my heart because it looks like the medication increase may not really be enough.

At 7:30 I took my morning pills…three muscle relaxants and the wake-up and not be sleepy pill… however the sedating side effects of the spasm pills overpowered the wake-up pill this morning and I drifted in and out of sleep all morning.  I have had a 10:00 rule since childhood. My parents wouldn’t allow anyone to sleep past 10:00 am – unless you were very sick. Otherwise get up and start the day. As a chronic insomniac, 10 AM is actually breaking the “consistent wake-up time” rules, but on days like today – I just couldn’t do anything else.  10 AM was actually my 4th attempt to get conscious enough to get up.

The thought struck me  as I groggily swung my legs over the edge of the bed and a wave of dizziness washed over me (Yay side-effects.) What if for once in my life I didn’t get out of bed? What if the only reason I left the blankets was to get something to eat, and go to the washroom and other than that I did not leave my bed? What if I stopped trying to be well, and actually allowed a full day to be ill? What would that look like? What would that feel like? What would I gain? What would I lose?

It was just a stream of questions – that had no answer. I still got up. But the lingering feeling of wait a minute – LOOK AT WHAT YOU ARE DOING and FEEL WHAT YOU ARE FEELING do they match?

No. They don’t.

I’ve read many articles, posts, headlines, bylines, books over the years that repeat the same sentiment “What most aggravates you in other people is what you are actually unhappy about with yourself.”  My biggest pet peeve with other people is the fact that what the words  they are saying, and what their body language is telling me don’t match. In many cases their words and their body language are telling exact opposite messages, and I don’t know which version of what they are telling me to believe, so I can’t trust them until words and physical presence align.

And here it is. What I am doing and saying in my own daily life is exactly that which bothers me about other people. My actions and words do not match what my body is saying and telling me.  I am acting and behaving in exactly the opposite way to how I am feeling and needing to behave.

I see in others exactly what I dislike most about myself. Well, damn, that mirror is a harsh reflection this morning.

 

 

Time to Simplify to Tiny…

 

poster-simplify-simp-med
Click the image to go to its source. 

Ok. Change of focus for today.  Mood’s a little less sitting with the pack of ugly wolves today, and the MS is there, but not totally all consuming today.  Not a great day, but not as bad as it’s been. I’ll take it.

I have finally agreed with my family doctor to see a psychologist, and now that I am being followed by a long-term disability case worker – if I don’t go, I would be considered non-compliant with my doctor’s wishes.  I see what you did there Dr. GP.  She’s been asking me to consider this for at least 15 years. Yes I am that stubborn. No I still don’t see why talking with a professional about stuff I can’t change is beneficial, but based on my mental health and physical health at the moment, I will agree with a dear friend of mine who said “I don’t think [you’re] in a position to accurately assess whether or not therapy is a good thing.” (Or at least something very close to this.

Dr psychologist will now be referred to as  Dr LT (Dr. Let’s Talk.) I show up – although as is typical for me at appointment 3, I’m ready to walk away, but I won’t – at least not yet.

So my “homework” until I see her again after Christmas,  is to read and work through some of the exercises in  Quiet Your Mind & Get to Sleep. Being a chronic insomniac since the age of 10, depressed and with uncontrolled MS related pain the purpose is to refresh my views of good sleep hygiene. Although I am familiar with the insomniac’s sleep hygiene creed – co-morbid conditions  add a layer that apparently this workbook addresses.

The other thing I need to consider is simplifying. With a limited amount of energy to go around in a day – what is most important to me and what is it that I need to be me?  This I am told I do not need to have an answer for by next appointment, but just something that I should carefully consider and think about.

So naturally I have to research the hell out of what sorts of things I need to consider and what does simplify mean, and what would that look like, and…. well questions, questions, questions.

I haven’t really started digging into the concept of “Simplify” yet. I just know that this seems like it’s going to be a lot more work and a lot more complicated than it sounds.

Some of the driving forces behind this are budgetary. I no longer have the financial resources I did just a few months ago.  In fact right now my cash flow is zero – I’m relying on scant savings and loans until my insurance payments and employment insurance kicks in.  So what does minimal consumerism for the foreseeable future actually look like, and how do I make it work when it means doing more with significantly less, and I don’t have energy reserves to dedicate to less convenient anything?

We’re cutting  everything we can. As a family we’ve decided what is important. The Internet stays. Cable, phone, and cell phone packages are being cut to the bare minimum or cut out completely (looking at you cable that we do not watch.) The land-line phone is a must for now – safety concerns not to mention we only use cell phones as a means to stay in touch when not at home. The only people who have our cell numbers are the people we want to get a hold of us quickly should an emergent situation arise.

These are all things I can see that must be done. And if things get really dire – internet and cell service goes too. food, shelter, electricity, water, heat – those are the most important pieces.

Buying next to nothing – other than food. This will be a challenge for me. I’ll have to think about this more.

However these aren’t necessarily what my psychologist means when she asks me to consider simplifying. I know it’s a much deeper more personal process.  I am hoping though, that the process of physical simplification due to necessity leads to a personal discovery of what  I really want to hold onto and what I can let go of because I just don’t have space or energy for it.

The one thing I consistently live vicariously through is the Tiny House movement. There is something  about it that resonates deep within in me… so if that’s what I seem to want…and I can spend hours and hours just reading, watching and browsing photos of these houses…. what am I really telling myself?  I believe that there is something larger to this dream/desire.  I think I need to seriously consider moving towards my tiny house dream – and undertaking the lifestyle changes that would entail to make that happen. Which in turn means – simplify….simplify…simplify at all levels… or just simp.