So I was curious when I saw this story was the ‘most shared‘ on Facebook on Veterans Day this past week. This You Tube clip has been viewed almost 14 million times. A haircut has gone viral on social media.
Here’s a homeless veteran with a history of alcoholism. He was given a makeover back in September, and the results were scheduled to be released on social media on Veterans Day. It was timed to fit with a campaign to raise funds for veterans (by getting a haircut). The social agency (Dégagé Ministries) involved happened to also make a substantial amount from donations from the social media activity.
Don’t get me wrong. I’m really pleased for the man. He got his haircut, some new clothes including a leather jacker apparently, and he finally got listed for some housing And he’s started going to AA meetings. That’s great. Except I’ve got this nagging sense of ‘there’s something not quite right here‘. I’m wondering was it the haircut that meant this man finally got some help?
Why does he have to change his appearance in order to hit the big time on social media? He’s still the same person inside. Why does a trimmed beard and highlighted hair enter him into the great social media hall of fame? I just don’t get it. 14 million people watched this particular clip but there are plenty of other news sites also carrying the story, and particularly the haircut.
In my mind what matters is the person inside. His appearance doesn’t count for anything. Somehow because he put on a tie, he has become acceptable and maybe even ‘one of us’. I wonder though, how he feels. Social media are raving about the haircut (as I am, ironically) but who cares about the obviously broken man inside? That’s what matters, surely.
I could go on about this but really I just wonder, am I the only one who thinks we’ve got something wrong here? What do you think? Is it necessary to get a haircut, in order to access welfare services that should be available regardless of how he looks?
Social media is really good for lots of things, but I really wonder whether we’ve lost sight of what matters. In my mind the haircut means nothing. It’s healing the wounds inside and meeting the basic needs of life that will really make this man’s life live-able for him. If the rest of us want a makeover show then there’s plenty on reality television.
As for me, I guess I’ll eventually get that haircut, but I doubt it will go viral. I won’t be putting it on YouTube. I know you’re disappointed, but I’m relieved.
“Beware lest you lose the substance by grasping at the shadow.”
My mood had been steadily declining as the week went on. I had made a bargain with myself to get to Wednesday. The fact that I had to make that deal with myself indicated in itself that things weren’t going well. I got to Wednesday. There was never any doubt that I would. It was my niece L’s third birthday and I was hanging out for some ‘L-time’ and I admit it, I didn’t want to create a family crisis around her birthday.
L-time was perfect. L, her father, her grandmother and I went out for coffee (and fluffy for L). In a bit of a daze, having taken some extra meds to get through the day, L and I played with the toys she had with her… teddy, little monkey and Sally, not to mention the cafe’s range of toys available. We were at a local cafe that had its buildings collapse in the 2011 Earthquakes, and now runs primarily outside (it’s spring here but they provide blankets for warmth in the winter and sun hats in summer). There’s nothing unusual about that in post-quake Christchurch and it’s good when you have kids (and adults) who need a bit of space. Oh, and delicious cake. For local readers, visit Under the Red Verandah Cafe (a shameless piece of advertising).
Spending a few hours with L made a significant difference to my state of mind. I mean it went from ‘I’m not coping‘ as I (strangely for me) posted on Twitter a few days before, to ‘I can do this‘. I concluded once again that I must get myself into the presence of L when I feel that bad. Do not stop, do not pass go… go directly to L’s home and have some quality time with my favourite person.
The thing is I came home feeling better but I still somehow posted this picture on my Facebook timeline that night (with no explanation):
I am not sure exactly why I posted it, but usually I am very careful about posting pictures or comments that could be disturbing and/or worrying to others. I wasn’t thinking. I posted it with a sense of being flushed down a toilet, or maybe jumping, and turned off the computer and went to bed.
By morning I could tell that a few friends were concerned about what I posted, but perhaps more so, I realised that for me, what I had posted was concerning. Time with L hadn’t quite improved my state of mind as I thought it might. I was still very depressed and struggling for hope. Living one day at a time, although it had cut down to one hour at a time. Time to admit there was a problem and get some help. And time to apologise to to friends.
I guess the thing for me is that earlier in the week I had tried to ask for some help (twice) from someone close to me, but they didn’t pick up on it. Perhaps I wasn’t direct enough. Perhaps there were just other things on their mind, but I had to accept responsibility for the need to keep asking until I got the help needed. That’s something that is really hard to do with you’re depressed, hopeless and you’ve already tried without success. You probably know that feeling too.
Yesterday I saw my doctor. Actually he wasn’t my doctor (who was away) but a very good locum who I have seen on a number of times before, and trust more than my own doctor. The first thing he picked up on was that last month’s lithium blood tests showed that I was only just in the therapeutic range. He felt my meds should have been increased at that time the tests came back, considering that I was already showing as depressed at that time.
What worked for me was that I was heard. The doctor heard that my mood was dropping by the week and that I needed some help. I am terrified of returning to my years of hospital admissions, suicide attempts and self harm. It was a never-ending cycle in one hospital door and out another. I will do anything to avoid going back to that lifestyle (if I can call it that). My mood might have dropped dramatically but I still had enough life in me to do anything I needed to do to avoid that. My doctor acknowledged that, as he increased my medication.
I have also now been given six therapy sessions (free) which may help me deal with some of the family issues going on for me right now, and affecting my state of mind. Meanwhile, today I am going out to see L. ’Therapy‘ of a kind for me, and her chance to show me her new scooter and balance bike (birthday presents).
Someone said ‘fall down seven times, get up eight‘. I don’t know who but I know it’s true. I just have to keep getting back up. I know this is a recurrent illness and every time I get back up is another claim of hope that tomorrow will be better.
“Needing help doesn’t make you weak, in fact quite the opposite. It makes you strong, smart, resourceful, and realistic. Being prideful is a weakness. Asking for help when you know you’re in over your head is STRENGTH. Don’t ever forget that!”
Today in New Zealand, is Guy Fawkes Night. It’s a tradition that is celebrated in a number of countries and has its origins back in 1605 when a man by the name of Guy Fawkes, attempted to blow up the British Parliament. Apart from the fact that New Zealand is part of the British Commonwealth, I really don’t see why we still ‘celebrate’ it. Afterall it’s nothing to do with my country is hardly an honourable event.
Celebrations come complete with bonfires and fireworks, and what kiwi child can’t remember their father tying Catherine Wheels to the clothesline, and setting off Skyrockets out of the old glass Fanta bottles? The fireworks were always pretty but the fear of the noise and fire was overwhelming for me, and I was usually glad it was over. The bullies after school would set off Double Happy and Tom Thumb firecrackers, throwing them at anyone in the wrong place at the wrong time. Again, not something I enjoyed. Thankfully firecrackers are no longer legal.
Nowadays there is a move to official, public firework displays down at our local New Brighton Beach. I’m quite okay with those, although I don’t ‘do’ crowds so tend to stay away. Crowds in the dark, with loud explosions, is not my idea of fun, even if it’s professionals out on the sea lighting the fuse. But still many people choose to let off their own fireworks in their backyards, and last night it seemed that my whole suburb was doing this (perhaps leaving them free to go to the official display tonight).
Yesterday wasn’t one of my better days. Actually on the fibromyalgia front, it was a pretty good day (finally) but there were a few emotional triggers, a few ghosts from the past, that set off several (private thankfully) meltdowns of tears. It was one of those days I didn’t want to be awake anymore so headed to bed early. Unfortunately at the same time my suburb was letting off fireworks.
See? I can admit it. I’m scared of the dark. Actually I wasn’t as a child, but as life has gone on and trauma has come my way I have come to dread the dark. I simply don’t like not being able to see what is around me. I need to be able to see if there are any threats to my safety or sanity. Some nights are better than others but last night was one of those where I was sleeping with the light on. What’s more I couldn’t bring myself to close my eyes. I desperately needed to see. That doesn’t help in the getting to sleep process.
As I lay there, trying to go to sleep, fireworks were exploding nearby sending both light (through the curtains) and noise into the room. I was anything but relaxed. I knew it was probably a window of about half an hour (as it went dark outside) that the fireworks would continue. I grit my teeth (don’t tell my dentist) and sat it out.
“Someone once told me that none of us are actually afraid of the dark; we’re scared of what it conceals from us. We’re afraid of having something with the potential to hurt us standing right before our eyes and no registering it as a threat. People can be like that too.”
For me, these words are quite accurate. I wasn’t scared of the dark as a child and generally wasn’t an anxious child. I’m 48 years old now and I struggle to sleep in the dark. Even my darling L (who, by the way, turns three next week) sleeps in the dark, with an occasional visit from mum. But not me. I go through stages of needing a light on somewhere, but right now it’s not a good stage.
I have learned what the dark contains, and what is hidden in the shadows. I have learnt that there are people and things that can hurt me. I have only just got over the whole ‘earthquakes in the dark‘ thing that has been hitting my city for three years now. Imagine a 7.1 quake in the dark if you can, and you soon learn of what you are scared.
More recently though I have discovered there were people standing right beside me, that were a threat to me… but I had no idea for far too long. They were there to abuse me, and lie to me, determined to ‘play’ with me and perhaps even destroy me… and I had no idea. Let me be clear. I knew they were there, but I had no idea they were such a terrible threat to me.
That’s why I’m scared of the dark. I need to know what, and who is there. I can’t close my eyes because I might miss their approach. Now that I know of their existence and threat, I can do (and have done) what I can to protect myself. But trauma has visited me again, and I remain fearful of anything else that might seek to harm me.
I have some work to do, but meanwhile the light stays on.
“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.”
— Laurell K. Hamilton (Mistral’s Kiss (Merry Gentry, #5))
(That’s what ‘Dona Nobis Pacem’ means)
Today I am participating, for the second time, in Blog4Peace… because peace is something that I strongly believe is desperately needed in our world. Bloggers from over 200 countries are participating today, and that just says to me how important our quest for peace is.
Sometimes I’m not too good at sticking to ‘the rules’, especially with blogging challenges and the like. Hopefully Mimi will forgive my errant ways. Usually bloggers create a template of their statement of peace, and post it on their site on 4 November. I have borrowed a template (above) for this post, but came to the conclusion that firstly, I’m a better writer than an artist, and secondly, I had something to say that I couldn’t contain in a template. As well as that my brain isn’t quite functioning straight right now and to achieve both tasks is simply beyond me.
I was watching a movie the other day. A favourite from years ago, of which I have just managed to get my hands on a copy. It is The Mission (1986) starring Jeremy Irons and Robert de Niro.
The brief summary of what this is about is that some Jesuit priests are living and working with locals above the Iguazu Falls in the South American jungle in the 1750s. There is some outstanding music in this movie, probably one of the reasons I love it, but there are difficult moments too when Portuguese rulers take back the land, destroy the mission built with the Jesuits ,and try to enslave the locals. The priest, played by Jeremy Irons, believes that God is love, and violence is a direct crime against that love. He argues that they should trust God rather than fight back. He chooses to stay with the villagers in peace while other Jesuits decide to renounce their vows and fight with many of the male villagers.
It’s hard to fit a movie into a paragraph, but the reason I raise it is the two choices that are made, effectively between peace and war. I sat watching the movie, and there were villagers, priests and soldiers representing the Portuguese rulers dying everywhere. Most of it was played out beside the river and I was struck how easily dead bodies were cast aside, out-of-the-way, so that the fight could continue. It seemed to me those bodies meant nothing, and I was struck with a knowing that I could never kill another being (human or animal), in such a situation because I simply couldn’t allow myself to let them mean so little. It was difficult enough to stand and watch my cat being euthanised last year. I knew it was taking away her pain, but it was so difficult to let a life be taken.
That said, that’s an easy statement for me to make. I’m not back there in the 1750s with the threat of my village being destroyed, and I’m not even in a position where I have to consider that I might be sent to war here in the 21st century. I live in a country (New Zealand) where military involvement is not mandatory. It was for young men (including my grandfather) in the first and second world wars, but as a woman, that was never something I would have had to face doing. Yes, it’s easy for me to say. My choice not to bear arms would not have any affect on my family and/or loved ones. Saying no is definitely an option for me. But I get that for so many, it’s not that easy.
Peace is one of those things that I think we all have our own views of what it is about. For me it is about respecting the value of each human being to a point where that person deserves to be saved. This post isn’t directly about war, although obviously it is not ignored because without peace we often have war. My personal belief is that war is never necessary. There is always another way of solving a dispute, and every effort should be taken to preserve life. Maybe it’s more difficult, maybe it takes longer. Jeremy Irons, in his role, chose to take what he viewed as God’s way. That’s not why I like it but rather what I do I like is the respect a peaceful solution offers to each individual.
We are all worth saving. None of us deserve to be left dead or injured on the side of the road, or permanently traumatised by the horror that soldiers, and the indigenous and local people have witnessed in the name of war. My belief is that peace values each of us. It says we are all too important to be cast aside as I saw in the movie.
That’s why I have taken time out from my usual blogging to take part in today’s Blog4Peace. All of the bloggers taking part in this event believe that if words are powerful….this matters. The wider we spread this message, each in our own way, the more people will see that the right thing to do is to lay down arms and live at peace.
What does all this have to do with blogging for mental health? If we had peace world over then we could all let it be. I am convinced that our overall mental health would be significantly better.
Music drew me to that movie, just as I believe that music draws us in peace toward togetherness. That’s why I’m finishing this post with music from Playing For Change Songs Around The World.
“Dad, how do soldiers killing each other solve the world’s problems?”
― Bill Watterson, Calvin and Hobbes: Sunday Pages 1985-1995
Image credit: Shannon Pinkley-Wamsley
My first day at University (College in some countries), as a 31-year-old, turned out a little different from what I had hoped. It was a big thing I was doing, heading into study as an adult, after about four years of mental illness. I was pretty anxious, and that showed when I found myself sitting in a Chinese language class rather than the Psychology class I had enrolled for.
It’s been a while… well, it has been a while for me since I wrote. In my last post, I commented that I thought I had turned a corner, and I firmly believe that in that I have gained a whole lot of peace that has been missing from my life for months. It doesn’t mean all the hurts are healed by any means, but it does mean that I can start to move forward.
That said, I stopped writing because I have simply been lost for words. I still am, but I’m trying to pull a few words together because for some people I owe them an explanation for my silence and absence. I know that I’m not doing a good job as a friend right now, because I guess I have cut myself off and withdrawn into my own world. There are a number of reasons for that, some of which I have a better understanding of than others.
Firstly, fibromyalgia. One of the symptoms of my fibro is my inability to recall the words I want to use in conversation. It applies to writing too but it simply takes longer, but for a conversation I am constantly struggling to come up with the words I want. There is a technical name for that, but I admit I can’t for the life of me remember. Ironic, isn’t it? But it’s just a label. It’s also something that is common for fibro sufferers although everyone’s symptoms are different, and so not everyone will struggle with it.
It is good when I have someone with me who knows me well. They can help me find the words I want, but usually I just look, and sound like I’m old before my time and my memory has gone, or just completely dumb. My memory hasn’t gone, and I’m not dumb. It’s simply about the brain processing information.
I admit that I get frustrated with it when it is particularly bad, and so I withdraw. Any form of communication becomes frustrating. It’s easier just to not go there.
But there’s another reason for my withdrawal, one which I don’t fully understand but that I’ve seen myself go through before. This past year has seen a lot of hurt for me. I haven’t been treated as well as I would like at times, and because of it, I have struggled to trust. The more I got hurt, the more I withdrew because I simply didn’t want to be hurt again.
It gets out of control when I don’t know who to trust, even my close friends. When the scared part of me shuts them out, as I have done, I know that I’m in problems. It’s just that acknowledging the problem is one thing, but changing the behaviour is another. It’s not that I don’t trust my friends, but it’s more that I don’t trust the world as a whole, and my friends get caught in the way. I’m sorry.
I have written in the past about Ted (see Real), and in this situation he becomes all that I trust. He becomes my world because I know he won’t hurt me. I said to myself a few months back that I wasn’t ever going to write about Ted again because the risk I took in my honesty about a very vulnerable part of my life was abused. But if you don’t get anything to do with Ted, then you won’t get me. Ted is, in part imaginary, as well as in part real. It’s confusing, I know. Over a long period of time he has been my way of coping with the world. When the world gets too much, I withdraw back to him.
Withdrawn is not a place I want to stay but if you haven’t heard from me, if I haven’t replied to messages, if I haven’t commented on your posts… this is why. I’m trying to learn to be a part of the world, a human, a trusting human again. I have got some peace, but now I need trust. Please bear with me in the meantime.
“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.”
― A.A. Milne
- Real (infinitesadnessorhope.wordpress.com)
Since I started to write about my life experiences and journey with mental illness, I have had a variety of responses to my experiences from friends and family. That’s not surprising. Often I reminded them of things that had happened in the past, people who had been in our lives, and often too, they have also gained a different perspective to our shared histories.
“I wish there was something I/we could have done”
“I wonder if I/we could have helped”
“Perhaps I/we could have protected you”
Sometimes their responses were affirming for me, but other times I admit I wished I hadn’t written it in the first place, because now it seemed that some were holding guilt for something past (whether or not it might be warranted). It’s hard, because it wasn’t something I was seeking. For most of the bad things that happened along the way, I wasn’t consciously blaming others, although I know that, mostly, unconsciously there was a conversation going on in my head of “if only“.
“If only it could have been different”
“If only someone had been there”
“If only someone had protected me”
But ‘if only‘ didn’t happen. Or perhaps if ‘if only‘ had happened then I wouldn’t have been writing about it.
For that conversation in my head, I have had to travel a journey of forgiveness and letting go. Sometimes it has been easier than others, and I admit I am far from completely through that journey. Sometimes I think I’ve got there, but then it hits back and I know I have more work to do.
Perhaps the bigger battle though, has been the statement that I see now that I have spent most of my life telling myself…
“You should have protected me”
I should have protected me. Right or wrong, that’s what I’ve been saying. I should have made sure the harm I came to, or the experiences I went through, didn’t hurt me. I should have protected me.
What strikes me is that even as a child I expected myself to be the one doing the protecting. That seems like an awfully big ask for a child.
I realise I continue in my life today saying I should have protected me. If I look at the events in my life of the past year or so, I have struggled more so with somehow letting myself down, than with what anyone else might have done to me.
As I have written recently, I felt let down by my gut instinct (see Gut Instinct). My gut instinct appeared to have not warned me of danger. I felt so sure of what I was doing, certain I was on the right path… only to crash and find I was ‘wrong’.
I put that in inverted commas because I felt wrong. I was certain I had got it wrong, but I’m starting to accept that while my gut instinct didn’t lead where I thought it was going, it wasn’t necessarily wrong. And that is a huge thing for me to be able to start to say (actually a friend said something similar to me a while ago and I couldn’t possibly see what she meant).
Right now I have little idea how it can be can be ‘not wrong’, but I’m willing to let it be a possibility.
While I have had another outstandingly, horrible week, I’m learning in the process of pain. I’m learning to forgive myself. To remember that I am human too. I am allowed to make mistakes, and I don’t have to punish myself for a lifetime ever after. I admit I know very little about self-forgiveness because I’ve never given myself that chance. I’ve been so hard on myself that self-forgiveness was never an option for me.
Today, I realise that I can forgive myself. I can allow myself to be human. Just as I allow others to be human, it counts for me too. I think I’ve turned a corner.
“Therefore, you really need your inner protector to stick up for you: to put your weaknesses and misdeeds in perspective, to highlight your many good qualities surrounding your lapses, to encourage you to keep getting back on the high road even if you’ve gone down the low one, and – frankly – to tell that inner critic to Shut Up.”
- Rick Hanson, Wildmind
Today (10 October) is World Mental Health Day. Yes, I accept that for some of you I am a day early. That thing called time zones always has me a day ahead of everything, but maybe that just means we can have two World Mental Health Day’s. What do you think? Twice the coverage? It would have to be good.
My first task on this day was to go look at what the World Health Organisation (WHO) have set for the theme of the year. This year’s theme is the elderly and mental health. Personally I think this is a great theme, not simply because we are all getting older, but because I have an 85 year mother for who I have some responsibility to help as she copes with what old age throws at her. Old age ain’t pretty (and I’m not talking looks) but it’s actually not what I have on my heart today, so I’m deviating from the theme. Apparently that’s allowed.
I am worried about what is happening about the mental health needs of those on our planet who aren’t fortunate enough to live in first world countries. From where I’m looking it doesn’t seem like there is a whole lot of support for people with mental illnesses in the third world, and perhaps war-torn countries, let alone for those who are simply trying to maintain a good level of mental health.
Look at the globe depicted in the hand in the image above, and that says a lot to me. Because it seems that all the world’s focus is on the countries who actually probably have the resources to handle their needs, if they just managed them properly. But where are the poorer, less resourced countries? They are the ones that need to be targeted.
I like the focus there is on veteran mental health, and the need identified for post traumatic stress support and treatment for those who have served in war zones. But what about the people who live in those lands as their home? What are we doing to treat their post traumatic stress? They experience trauma too.
A few weeks back there was a major (7.7 magnitude earthquake in Balochistan, Pakistan). Having lived through a number of catastrophic earthquakes in Christchurch, New Zealand, I admit my ears prick up when I hear there has been another major quake somewhere in the world. While this doesn’t directly relate to World Mental Health Day, what struck me then was the scant media coverage of the tragedy. For some reason the people of Pakistan suffering and being killed was of seeming little importance to the world media, and so it sadly becomes of little importance to the world.
And that’s where I get back to World Mental Health Day. When world media decide for themselves what they class as important, people miss out on the aid and treatment they need. The survivors of that quake will be in all sorts of need for mental health support right now, but what’s the bet that half of us didn’t even know it happened?
What else matters to me? I’ve been thinking about the situation in Russia with the open abuse and restrictions on those people who identify with LGBTQ. I wonder if you are a transexual, Russian woman how you access good and safe psychiatric care for your Bipolar Disorder? The gay, Russian man with suicidal depression? I’m wondering whether they are of any priority to the people and services who have the skills and resources to treat these people? They need and deserve the same standard of care as the heterosexuals in that country.
I don’t know the answer to these questions but I damn well hope someone does. I hope someone has these peoples needs on their priority lists.
World Mental Health Day is a wonderful tool if we use it to ensure that mental health services stretch right around the globe. If World Mental Health Day is just for the first world countries then I think we are all letting down our fellow human beings. We are one planet and we are all worthy of quality mental health.
“I’ve always thought of wholeness and integration as necessary myths. We’re fragmented beings who cement ourselves together, but there are always cracks. Living with the cracks is part of being, well, reasonably healthy”
― Siri Hustvedt, The Sorrows of an American
Join us for the 3rd Annual World Mental Health Day Blog Party on Oct. 10 (psychcentral.com)
- World Mental Health Day (On Kiwi Time) (infinitesadnessorhope.wordpress.com)
Every few months I get a little bit desperate.
The pain and fatigue of fibromyalgia gets too much, and even more so, does my inability to access adequate medication to treat it.
I know I should just stay away from Google and search engines. They are often up to no good.
But as I said, I’m a little bit desperate…
…and so anything will do (almost).
Don’t worry though, as I am still a little bit careful about what I read on the internet about fibro (and anything else).
As I say though, I’m a little bit desperate… again.
Sometimes things we already know, come off the screen at us and we feel the shock of reality all over again. This time I was reading about the use of medicinal marijuana to treat pain, something I have had recommended to me many times, from many different places.
This is what I read (first paragraph on the page):
“Fibromyalgia, a chronic pain syndrome, is hard to treat and impossible to cure. With pain so debilitating, patients may wonder about trying medical marijuana to ease their discomfort.”(1.)
I knew everything contained in those two sentences but that “impossible to cure” hit me hard. I had heard “there is no cure” at the time I was diagnosed, but I guess I hadn’t really heard it. I knew it, but I hadn’t really taken it on board. This time I did. Ouch! It hurt.
Why? Because my options look slim, and while fibro is not going to kill me, it does kill my ambitions and dreams for the rest of my life, when I can’t find some form of treatment that will enable me to manage my symptoms.
I want to be working again. I want to use the skills I’ve have, and have purposeful employment that can give me a sense of achievement. I’d even like to earn some money doing it. Being flat broke isn’t easy. I don’t actually want to be reliant on welfare handouts for my existence.
It’s not my mental illness that is stopping this from happening, but the fibro, and my inability to get relief from the ongoing symptoms. I can’t even say “well, I’ll work two days a week” because I have no idea which two days in a week I would be able to do the job. I don’t know from one day to the next, how I will be, and whether I will be able to work. No employer in their right mind would take me on.
There are lots of possibilities for alternate ways to treat fibro, but that’s not what this post is about, except to say that most alternatives are expensive and beyond my budget, or interfere with my current prescribed medicine regime (for my mental illness).
This post is about something that I’ve been struggling with for a while, and was part of the reason I chose last week to stop blogging for a while. It is that lack of hope. It is realising that this isn’t something for six months, or even a few years. This is impossible to cure (and it’s not just WebMD who say this).
Regardless of whether we’re talking physical or mental illness, who of us doesn’t want to be able to have a realistic hope for the future? No matter what it is. Just something that is better than where we are today? Maybe it’s being able to get out of the house without panic, or maybe working part-time? Maybe pursuing an interest beyond ourselves? Maybe achieving some long held goals?
Maybe all of that is too hard right now, and that’s ok. I spent many years not being able to see beyond each day. But is it fair to say that we want something better than today?
That’s all I want Something better than today. For the past week I have had a rough run with fibro symptoms. I’ve spent most of my time in bed, with sleep (if I could get it) the only escape from pain. I don’t want that for the rest of my life, and that doesn’t seem unreasonable.
Unfortunately that seems to be exactly what my doctor is happy with for me for the rest of my life. Easy for him to say. He’s not the one living this life. I know that means I need to get serious about finding another doctor, because I want hope. A doctor who shared my hope for something better than today would be great. I simply don’t want to spend the rest of my life mostly in bed, and in pain.
I know that particularly with any type of mental illness it is really hard to look ahead. I get that. But I also get that when I enrolled at university, I did it because I finally hoped there would be something more than hospital admissions and ER visits. And there was more, much more. I eventually got my degree and then got a job (albeit part-time) doing something I loved. Even if you don’t believe that there is more, just know that someone (that’s me!) can see there is more for you. Something better than today.
And right now I need to see more for me than ‘impossible to cure‘. Like my mental illness (BPD), a cure might be more than I can hope for, but I can manage my fibro with the right treatments. I can live a functional life in spite of it. And that’s simply all I want to be able to do with fibro too.
To be fair, I know that there are some alternative theorists who say that a cure to fibro is possible, but I have yet to see how. It seems more to me that there is so much controversy about even the existence of fibro, that a lasting cure seems unlikely right now. There is still way to much argument of whether it is ‘real‘ or ‘all in the head‘ (which for the record, I believe it is both. See my post It’s All In Your Head!).
PS. Please don’t give me sympathy. I don’t need it, and it will only make me cry. Many of us bear burdens of pain (just different types of pain). I am no different than you, just bearing a, perhaps, different load. What I need right now is practical hope that this can be different. WIthout that, I’m struggling. Without that, I admit that I can’t see the point.
And yes, a few days ago I did say I was taking a break. Maybe I still am, but this just needed to be said. Why? I don’t know. I’m just going with it.
“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.
When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
― Alison Lurie, The Last Resort