May 6, 2013
I think change is a beautiful thing. I’d hate to be stuck in the same pattern and denied variation.
March 19, 2013
December 31, 2012
I have completed reading thirty books and have thumbed through twenty or so more. I spent two months bed bound because of Fibromyalgia and ME. Those were pretty miserable times. At one point, I got carted off to A&E because I was having real problems breathing.
This year I have become more of a hermit than I've ever been and experienced some of the worst episodes of anxiety and panic than I have in my entire life.
I've spent days thinking about quitting my novel and hours writing crappy short stories. I've had an article published in InkSpill Magazine, something that I'm really proud of. I've had three rejections. I was hoping to have got myself out there a bit more but considering my circumstances…
After my time stuck in bed, which lasted from the end of July to the first two weeks of September, I found my mobility to be less than ideal. It was less to do with muscle deterioration and more to do with the Fibro relapses which have become more potent, resulting in me moving around less and when I do, having to use a stick to give myself some extra stability.
Since September, because of the relapse, I have been undergoing as many tests as possible to find out if there's nothing more to this Fibro / ME / CFS lark. Turns out there's something concrete going on after all and I still have further specialists to consult. Bases = covered.
This year I've gone mad twice and suffered from serious bouts of depression. I've put on weight due to not being able to move about as much and comfort eating because I feel terrible.
Speaking of food, I've adapted my diet. It conflicts with my ideas but I've taken to eating meat produce again to see if it helps with my conditions. It has and it hasn't. I've discovered a possible sensitivity or intolerance to wheat and gluten which comes with the job description when you have what I have. Yesterday I found that quickly cooking up diced mushrooms with cumin seeds and layering them in a whole capsicum pepper with brie and a bit of seasoning, then baking the lot for ten minutes, is an awesome dinner.
I turned 28 and enjoyed my birthday for the first time in over a decade. I've spent Christmas with my Dad. I've lost friends, realised acquaintances, made new connections and seen for myself who my true friends are.
I've given too much of myself to others and am yet to develop the ability to create stable boundaries.
I've seen complete crap on TV and read some utter tripe. But I've watched the Harry Potter films over a dozen times, and fallen asleep to the sound of Brian Cox talking about the universe more times than I can recall.
I survived the end of the world, along with the rest of the world.
A woman in a hospital waiting area made a comment about my being in a wheelchair on my way to the outpatients area, and 'clearly having nothing wrong' with me. I took that one to heart.
I've looked in the mirror and seen myself as what a heroine addict might look like in a film: pale, bloodshot eyes, black rings, miserable.
Two of my dogs have passed on.
My Dad and I have spent a lot more time together and had some real laughs. We switched rooms so that I have a warmer environment. Not that the room I was in was ever cold; it was me – the ME. Dad has gone above and beyond his mortality to be there for me.
I've found my way back into therapy and watched it fail because of conflicting requirements.
I busted a gut for one of my dearest friends and helped her reach the first stage of her dream. Because to me, that's what friends do.
I've met my great-niece and fallen for her even though I'm not a 'kid' person. She's just like her Mum.
Despite all of my efforts, the calls to the Samaritans, the drive and desire to learn, write, improve my lot and get my life back, I have never felt so isolated, frightened and dejected.
These are the things I can remember about 2012.
What do I want in 2013?
Treatment. Friends. A new home. A fresh start. A finished book. A published story. A pug. The ability to walk for more than ten minutes before feeling extreme pain and exhaustion. Decent nights asleep and pleasant dreams. Love. Recovery. Privacy. Books. Knowledge. Memory. Self-security and confidence.
That and probably some more. A handful are material.
I was in a local coffee house with my Dad the day before Christmas Eve. We overheard a conversation where an individual was describing exactly what they were getting for Christmas: very expensive, pointless items basically. I turned to my Dad over my cup of mint tea and said
All I want for Christmas is my health back.
I'm grateful for everything that I have and all the things that have happened this year, both incredible and difficult. Everything has helped me grow and decide my path for not just 2013 but the rest of my life. My life.
This year I lived to the best of my abilities and to my own standards and ideals.
Photo: Copyright by Moyan Brenn
November 15, 2012
For some reason, I'm doubting everything. And I mean everything. I don't want to name the root of this feeling because that would bring it into the realm of the real – I'd rather it remained a thought-form so that it could sink back down and become buried.
But wouldn't that be worse? It'll be there, ready for another time and place.
No. No names or specifics. Just, I'm uncertain. It's deeper than you assume. And I'm not panicking.
November 6, 2012
I've been in two minds about writing this post. It's something I want to say but not in order to moan and berate. I'm going to say it because it means a lot to me, because I want to reverse it.
I'm socially isolated.
I rarely get to physically see my friends or my family because they live a long way from me and have pretty busy lives. I don't get to go out and build a social life because I have medical conditions which prevent me from living a full life, safely.
I have no control over those things. I can try to bridge the gaps where possible but I can't click my fingers and bring everyone I love into the same space, free up a few hours a week so I can see them, and then magically cure my conditions so that I can lead a socially active life.
Sorry if you're reading this and happen to be a great optimist, but the above scenario, where I alone make everything perfect, is unrealistic. I'm not a defeatist by any means. I'm just in touch with what's possible given my circumstances.
So I'm unable to make regular physical contact with those I love. The solution is social media, right? Kind of yes, kind of no.
Twitter, Facebook, Tumblr, WordPress and any other social platform you can think of, are all brilliant tools. I use the first four regularly, connecting with people not just in my close social circle but also with other people across the world that I have never met. You're probably one of those very people, reading this now. Hi! How are you? Thanks for reading.
But social media, for me, falls short. Why?
It goes back to the people I'm closest to having busy lives. I wouldn't deny them that, though I would appreciate being spared a thought. Sometimes I go off radar and whilst I'm absent, I rarely get a message asking where I am and how I'm doing. It may not be the case but it often feels like nobody has noticed I'm not there.
That is isolating.
I try my utmost to keep in touch with friends each week when I'm able to. It's at least once a week, even if it's a quick comment on a Facebook update. It shows that I'm keeping track of my friend's movements and paying attention to their thoughts. When I'm not having a rough time with my health, I go all out and write an email or even better, I go Old Skool and write a letter. I'll also pick up the phone and call my sister, or arrange a Skype/phone call with a friend.
This is how I connect with people 90% of the time because I'm unable to do it physically. Even with my alternatives, I'm limited by my conditions. Talking for an hour on the phone is knackering, for example.
So what am I asking? For people to connect with me more often. I don't want to be socially isolated, even though social situations make me anxious, and I think this is pretty obvious in how I communicate with my family and friends, and how I blog openly and honestly. I reach out.
Please reach back.
And it's not just me. We're on the crux of the loneliest time of the year: Christmas.
The 2012 festive season will be an empty and miserable time for many people – those with no home, children with no parents, the elderly, the estranged, individuals who have lost their families. Last year, I made a donation to The Salvation Army so that someone would have the company, care and attention that they deserve. And even though my finances are tight, I will be doing it again.
It doesn't take a great deal to keep in touch with someone. A few minutes out of the day to send a message. Arrange a phone call. Write back. Doing one of those things for me will make the difference between a week where I start to believe that I'm the most insignificant person on earth, making my depression worse, and a week where I think
I am not forgotten. My friends still think of me even though I can't do the normal thing and go out for socials with them. My friends acknowledge and respect that I live with a complex tapestry of illnesses.
Props to those of you who who do tweet and message me. Extra credit for reading my thoughts! You help me feel so much better and a lot less isolated.
Photo courtesy of takethea
September 25, 2012
I ignore the outside world. We don't get on.
Things slip through though, things about calling other people horrible names, people invading the privacy of others, people lying for gain. People thinking that they're what matters.
This afternoon I took my chihuahua, Misty, to the vets to be euthanised. Her mobility had rapidly declined, she wasn't enjoying her food and she looked downright miserable. I think she was in pain with her back because she wouldn't settle. She'd also taken to isolating herself from the others.
I spent some time with her in the morning and then let her be with Ruby and Crumble, our other two chihuahuas. Crumble is her son.
The vet said they could probably treat her for heart disease and any other afflictions, but I don't have the money to do that. Previous experience has also taught me that once a dog declines, the best thing to be done is to let them go peacefully, not to draw out their suffering.
I did the right thing for my loved one today. I didn't do it out of selfishness, laziness or malice. I did it because I loved Misty with all my heart as I loved her mothher Tilly, and as I loved Phoebe too.
I have no regrets.
I've been bed-bound since the end of July. Things have started to pick up a little in the past two weeks, though I still need extensive periods of rest. I'll get up and eat, perhaps do a small chore and read for a spell, but then I must rest.
If I have appointments, I must spend the day prior and the time directly after taking complete rest. I'm having to walk with a stick because I feel unsteady on my feet and am physically weak.
I've had an infection in my chest that lasted all of August and was left untreated by my doctors because they felt that an infection was only an infection if it produced gurgling in the lungs. Never mind that it was painful to breathe and impossible to use my full lung capacity. Never mind the obvious symptoms of a viral inflection.
It was so awful at one point, I called an ambulance. Five hours later, though reassured I wasn't suffering a cardiac episode, I remained untreated and exhausted.
Despite feeling so unwell and going down the pan, I'm still thinking ahead to better things. I'm still hoping that consultants will discover something treatable in me and that I'll start to recover from what has been a year of rapid deterioration in my health, part of a four year pattern of general decline from a healthy twenty four year old to a bed-bound twenty eight year old.
I still try to write a bit each day and I get out of bed, no matter how unwell I feel, to attend my appointments. I got out of bed to put my dearest pet to rest the way she deserved.
It makes me think of all the things from the outside world, all of those people being cruel, greedy and fickle. I don't feel above them. I feel sad. I feel horrified that those things are considered more important than living a good and just life, and doing the right thing no matter how hard it is.
I was in the process of giving up with this whole 'trying to continue with life' thing but I've changed my mind. I don't know why. Maybe it's another thing for me to work out once I get to see a therapist, which is this week as it happens.
It's autumn and I'm ready to knit again. Small blessings.
July 20, 2012
My last two posts have been gloomy. Life is hard to live sometimes and I often question why that is and whether I'd have better luck in a different life.
I had a terrible time during my yoga class today. I couldn't focus and I ended up crying through most of it because I was convinced I needed to get out, escape. Run away and not come back. But it wasn't the yoga I was running from. It was me.
So I come home and eat junk instead of taking care of myself and intermittently weep when I get that urge to run again. And then I find that a post I wrote for Tiny Buddha a few weeks back, when it was sunny and I was getting burnt, has been published on the site, and people have responded really well to it. There's a lot of gratitude going on.
I cry again but with sobs this time. Feeling so crushed and then being propped up by complete strangers is the ultimate in vulnerability and has helped restore some of my emotional strength.
If you're one of the kind folk who commented and are reading this now, you made a real difference to my day. I'm so grateful.
I don't know how long I'll be in this state for. It could end tomorrow or next week. It could end when Autumn hits because I'm generally happier when the nights are longer. I don't think it matters in the end. I'll carry on living and feeling whatever I feel.
June 9, 2012
By the time you read this, it will be close to 5.30 a.m. On June 9, 2012, as I write it.
I’ve slept badly. I fell into dreams without realising and awoke at 2.30 with a sadness in me, so black and terrified.
I didn’t want to wake my sleeping family so I called the Samaritans. I wasn’t sure if they’d pick up. It rang for a bit but then a man with a voice as gentle and soothing as gravel popping under the slowing of car tyres, came through the phone.
I’m never sure of what to say. I shudder out the first words all the time, usually something like “Do you mind talking for a bit?” or “I need to get something off my chest”, if I’m feeling desperate.
I decided to say “Good Morning”this time. It seemed apt.
They always listen.
Always kind. Always patient.
I talk for an hour, sometimes less, sometimes a lot more depending on the state I’m in. I went 8 minutes over the ‘talk free for an hour’ allowance, meaning I’ll be charged for the whole call, plus those 8 special minutes. And I don’t care.
Without the Samaritans, I’d be nowhere. I’d be nothing. I’d be in tears, hysterical and too frightened to tell the truth about what’s going on inside of me. I’d be waiting for ever, like I am now, to talk to someone about it.
Waiting for a therapy referral to come through is waiting for a cure.
Not a cure for my mental health problems but a cure for my loneliness, my sadness.
The Samaritans are my cure.
And so I’ve done what is right. I never have a lot of money spare because I have debts and bills to pay and a manic person inside of me who is obsessed with books, vinyl, iPad apps, and mysterious objects.
But I have made space for £3 a month to support a charity who gets at least one phone call from me every week.
That £3 will join the £3 that goes to the WDCS which helps protect whales and dolphins across the world, and £3 to the RSPB which helps protect our country’s bird life and environment.
The £3 to the Samaritans is to thank them for everything they do and, I realise, it’s there to help them continue to protect me. And when I say ‘me’ I don’t just mean myself; I mean all of the people who call up in the wee hours, any hour, needing a kind stranger to help them through a rough patch.
The volunteers don’t get paid.
My Samaritan in these early hours was called Paddy and he was just what I needed. I said he should be paid for his good work. He said knowing that he helps people like me to continue living life is payment enough.
If you see a Samaritan fundraiser, don’t run from them because you run from me and you run from yourself. Give spare change, make a Gift donation, set up a regular donation even if it’s small like mine. It keeps the call centres open.
Become a volunteer.
I’m not usually this honest on my blog, even though I’m honest about my mental health; without the Samaritans, I’m not sure I’d be writing this. I think I’d be in hospital.
I’m going back to sleep. I still feel unsettled but because of Paddy, I feel less alone.
March 30, 2012
I don’t know you, have no idea where you are, whether you’re living or dead, and you know just as little about me. But the thing is, I love you and I know you’re somewhere.
We’re made for one another so in the event that we finally meet, we’ll know.
The difficult part is trying not to sound rigid when I say this: one thing I know is that you’re female. You always are.
I’m female on the outside too at the moment, but I know you’ll look beyond my skin and see the man inside. And you’ll appreciate the woman in me too whilst I rest in the arms of your masculinity. Together, we’re no spectrum but a universe, a complement without the necessity of being complete.
Whatever we’ve both done in the past that has put us here were we are now, I don’t think it will keep us apart. If we don’t find one another in this life, we’ll try again in the next.
I’ll never give up because I have so much to give to you, and I need you more than anything.
I hope that we’ll cross paths in the next few decades (sooner rather than later) but until then, all you need to know is that I’m here and ready to settle and learn. I’m sorry in advance for how tough it’ll be, but i know you’ll understand and we’ll love each other all the more for it.
“Evangeline, hold me once more / and then never look back
Evangeline, kiss me like that / how will I ever forget?”
‘Into the Derelict Night’ from Explorer by Cerys Matthews
January 25, 2012
It’s not my strongest virtue. At times I have a hidden store of endless patience on which I can meditate but for the time I don’t have access to this treasure trove, I pace, stubborn and indignant. Frustrated. Irritable.
Come on, I say. Hurry up.
Nothing makes me so impatient as having to wait for books. I order them sometimes on a whim, other times in bulk, to satisfy what Lewis Buzbee describes as ‘book lust’ in his memoirs The Yellow-Lighted Bookshop. Lust always demands satisfaction.
I could swallow my agoraphobia, dose myself on chill-pills and descend upon my local book store but my desire for books often extends beyond their catalogue. Then the paradox comes; I have the patience to search out the best possible deal.
(Note: I do love supporting bookstores but I long for the secondhand store that thrives on people as much as it does profit. Online secondhand stores that donate proceeds to charity are my preferred choice even though they lack that physical, human element. Support your local bookshop, corporate or independent. Imagine the world without them… Disgusting, isn’t it?)
So whilst I’m suspended between contemplating prices for days on end and waiting furiously for days on end for the books to arrive, I find myself thinking about my lack/abundance of patience.
It’s application extends beyond books by the way; I have as much patience for waiting for my root vegetables to sprout as I do waiting for the dentists to send me an appointment; both can take as much time as they need, though for different reasons.
I become devoid of my staying power when cravings are involved. Chocolate for instance, is an insistent addiction. It’s said that waiting five to ten minutes when experiencing a chocolate craving is enough to render it mute but after having waited almost two hours last night, I set upon a long forgotten packet of baking chocolate chips and satisfied myself that way. Not as cathartic as a small square of Lindt, but it put me at ease.
(Note: I didn’t eat all of the chips by the way, just a small handful. They were sickly).
My composure disintegrates when there’s a hole to be filled; knowledge (book lust), sweetness (chocolate), loneliness (friends, letters, phone calls). It’s the expectation, the anticipation of the fulfilment of those desires, all of them base desires, that drive me to twisting my fingers about themselves until their joints are so loose, they disconnect from one another with a gentle tug and then slide back into place.
My grit exists when I expect nothing. I’ve answered a few calls to writing submissions and I’m calmer about this than I am about anything else in my life. Part of it is confidence, part is knowing that there will always be someone better. As long as I have done my best at the time of submission, I have nothing to feel anxious about.
And if I fail to catch the attention of the judges this time, I can revise the works and do my best for the next set of submissions, the effort itself being better than my last attempt because I have learnt more, matured, and am comfortable with perseverance.