pain

Blackbirds singing in the dead of night…

~ somethinginthewayshemoves ~ 2 Comments

It’s 5.07am. There are some very loud birds outside & the light is creeping around the edges of my blackout blind. I haven’t slept, but I do finally feel a little bit sleepy. Do I sleep? If so I might sacrifice the day. After no more than a couple of hours for the last few nights I might conk out big style. I wanted to do something today. Something nice enough to make me feel like I’m participating in normal life whilst still being easy. Sleeping all day does not fit the bill. Although, perhaps I’ll wake up feeling rested & be productive. If I could complete one of the many, many things on my to do list it might relieve a little anxiety. For now I’m stuck in the vicious crazy circle. No motivation + no energy = accomplishing nothing. As the things I have not done pile up so does my anxiety. Until the undone things & the anxiety are so huge that I’m paralysed by their weight. I’m just stuck underneath, stressing & not sleeping & feeling increasingly worthless. So, maybe I should sleep. I’m exhausted. I’m always exhausted because I never get enough sleep. There is always something keeping me awake. Be it pain or fear or coughing or nightmares or vomiting or the terrifying vagueness of insomnia. Right now I feel that illusive part of tiredness that usually escapes me. The fuzzy comforting drowsiness that signals actual sleep is a possibility.

But

If I sleep now, chances of sleeping tonight are slim. I could miss the chance to do a thing that could make me feel something other than grey or jittery. If I close my eyes now I’m risking the dreams. Flashing scenes dripping with all the things I cannot bear to look at again. Flickering images soaked in feelings too potent for consciousness. Then I’ll wake in a mess. Heart pounding, breath hiding & I’ll have to talk myself down. Fool myself into a calmness that’s counterfeit. Either way the day is scuppered. All those hopes for lightness dashed. 

So, I stay awake. I’ll just wait in this cool dark room for the day to really get started. Force myself into the shower. Try to make a plan that doesn’t feel overwhelming. Push down the fatigue & the jangling of every nerve for the possible reward of OK. Reassure myself that this isn’t forever. Repeat that I am not back in the hole. It has been a difficult month. I am allowed to feel bad. Tomorrow or the next day or the day after that will be an easy one. Just keep going. Swing from one pleasant moment to the next & hold my breath through all the rest. 

This will pass

I will write the things that are over due

I will do some god damn washing 

I’ll cook a proper meal 

&

Wash my hair

Peace will be restored 

Life will go on

&

I will live it. 
If only I could get some sleep…

If you like what I do you can support me here or on Patreon.

 

You & I…

~ somethinginthewayshemoves ~ 7 Comments

Dear Son,

I’ve been trying to keep low key busy today; house work, catching up on emails & so on. I have hoped to keep myself from sinking too deep into sadness. 
I’ve actually done quite well. I had a cry in the shower, but the water washed those tears away. There was no evidence left for anyone else to see, which is like you. Gone. Without a trace.

So, I’ve taken a lot of deep breaths & whispered to myself that I’m ok.

I’m ok

I’m ok

I’m ok.

And I am. More so than I’ve ever been since I lost you. I think maybe I can try again. Perhaps, I can do this life thing. I wish I could believe that would heal me, but you’re not a wound. The pain is bittersweet. 

I’ve been wondering what my life would be like with a 16yr old. Louder, grumpier, more complicated? I’ll never know how our life would been. I do know I’d have given you my best. I’m also sure that you’re worth it. The short time I held you within me will always be worth all the rest. 

Now, you’ve got me crying again. My tears are inevitable, as is my love. Inevitable & invincible. No matter what happens there will forever be you & I. 

Love always,

Mum

All I can say is I’m breathing…

~ somethinginthewayshemoves ~ 8 Comments

PTSD is a persistent foe. You can make progress & start to think maybe, just maybe you can actually defeat this bastard, but it knows you think that. 

It’s waiting for you to relax your hyper vigilence. The moment you begin to let go of the breath you’ve been holding for 17yrs it will suck it in & grow.

Folks in your life see you gaining strength & think you’re better. There is no ‘better’.  There is managing ,

coping,

trying to live,

daring to live?

The good days can start to stack up. You can feel a safe distance from the horror, but you can never be sure. 

You can never be certain that a flashback won’t stun you like lightening. 

And stuck in that hot, white memory you could loosen your grip on the here & now.

The relative calm & safety could be shattered. Perhaps only for that instant. You could be lucky, those smells & fears could melt away. Current achievements or delights may well wash over you. It’s possible. That happens. 

You’ll make plans & take steps. But you’ll always be looking over your shoulder. The knowledge of the cruelty of your own mind will keep you rigid.

Because lightening does strike twice & thrice & ever & on.

With every thump of your heart you know you’re only one more squeeze from disaster. Where little sleep becomes none. The crazy creeps out from behind all those positive walls, it brings terror & tsunamis of grief. 

And the pills don’t work

Or Dr’s 

Or the life jacket you had to make with your bare hands. 

There is only one way to row to shore & it’s brutal. It’s hot blood dripping from your fingers; slippy yellow fat & an uncontrollable urge to cut a little deeper. 

Bleed a little more 

Wrapping up the unthinkable pain in the easy hurt of butchering yourself. 

This illness is being  awake in the night & writing so you won’t do. It’s ignoring the destructive comfort because you so desperately want this new, real life. 

And, yes, all those yous should be I’s. 

It’s my past, my pain, my ongoing battle for a future. 


Listen, I’m a really perfect song.

If you like what I do you can support me here or on Patreon.

The mirror has two faces…

~ somethinginthewayshemoves ~ 5 Comments

Yesterday I performed a fairly miraculous transformation. I was so impressed with myself that I felt the need to share my handy work. 

I posted the above on Facebook with the caption, left to right & out the door in 40 mins. All of which is true, but there’s so much more I didn’t say. 

What I didn’t mention was how I felt. My head was wobbly yesterday. I am titrating Pregabalin slowly up to recommended dose. This is an issue because every time I up the doseage the side effects come back. Hence, my brain was not that sharp. Along with that my anxiety was troubling me. The thought of going out alone was frightening. I was of course sore; my back & feet are a constant source of pain at the moment. So, basically what I’m saying is the first picture is an accurate representation of how I felt as well as how I looked. 

I worried and procastinated for so long that I only had 40 mins to get ready. I forced myself out the door with the aid of diazepam, earphones & big sunglasses. I still felt exposed. I dreaded anyone talking to me or even getting standing too close. I got lucky with an almost entirely empty bus, but my heart was still pounding as loud as the music in my ears for the entire journey. At every stop I had to force myself not to get off & go home. Every bump in road sent a shudder of pain up my back. I persisted because I’d really like to have a real life. 


I met a dear friend who I feel completely safe with. We had a drinks & I managed to relax to level where I could enjoy myself. The weather was lovely, the company excellent & I passed for an attractive human being. 

I’m smiling in this picture because I was having a lovely time. I was still in pain. I’m always in pain. I say that not for pity, but as a fact. For my one evening’s entertainment I’ll probably require two days of rest. Today I am suffering. 


My point is that invisible illnesses are often attacked as not genuine & the weapon used can be anything sufferers manage to do. 

You can’t be that ill if you can work.

You can’t be so ill if you can go out.

You can’t be in pain if you excerise.

You can’t be depressed if you can put make up on.

And on & on & on.

I’m offering myself as an example. Some days are good, but I never feel ‘normal’. There is always pain & anxiety. There are nightmares & flashbacks & urges to butcher my flesh. There are days when I can’t get out of bed & nights of no sleep at all. It’s shit to have to push & push to accomplish everything. We (spoonies) have no alternative, if we want to build a fulfilling life, we have to fight. Wether we’re fighting to wash some dishes or to have some fun with friends we don’t need judgmental bullshit to add to our burden. 
Your reward for reading me venting my frustrations is the cutest cat in the world.

All things must pass….

~ somethinginthewayshemoves ~ 13 Comments

Last week I finally got an appointment with the pain specialist I have been waiting see. I had pinned my hopes on this Dr having some answers for me. He did. Unfortunately it wasn’t a diagnosis I wanted. 

My new consultant is convinced that I have Fibromyalgia.  As you may know I have been living with chronic illness for some time. I have a number of debilitating digestive tract issues. I also have problems maintaining a healthy haemoglobin level, which causes a raft of symptoms ranging from fatigue to angina attacks. Along with these known conditions I have increasingly had mystery symptoms. Pains with no definable cause, intensification of pain resulting from my health issues, continual sleep disturbance despite taking really quite strong sleeping pills, confusion , memory loss & needing to pee constantly. Add that to my existing physical symptoms & PTSD and you begin to get picture of what I’m dealing with. 

Pain in particular has been taking over my life. It limits almost everything. I can’t make plans, my social life has contracted & working outside the home is impossible. Even keeping up with housework is a mammoth task. I needed help. I was clinging to the idea that someone would find a problem that could be fixed. That I’d be offered surgery or medication of some crazy treatment, at the end of which I would reclaim some of my life. I knew that my diagnosed problems wouldn’t go away, but I held out hope that these newer cryptic concerns would be cured. Sadly, that is not to be. 

There is some relief in having someone say this is what’s wrong with you. I am glad not to have been patronised or had my mental health blamed again. I just wish the outlook was a bit sunnier. Since Thursday I have been adjusting to the fact that my pain is never going away. My current condition is likely to be my continuous one. I’ve had to read up on fibromyalgia & prepare myself for all it may mean. I have also been confronted with the new knowledge that pregnancy, which was never going to be straightforward is hugely impacted by fibro. This has been a big blow. I’ve wanted to be pregnant for a very long time. Knowing that I will most likely struggle to enjoy the experience is a punch in the gut. 

So, accepting this new diagnosis is a process. However, I am by no means defeated. I will start a new medication tomorrow. It’s likely to be a rough ride as it is harsh on the stomach, but the pain relief it can offer is worth trying for. I’ve already been referred to various groups & medical professionals. I’m doing my own research; I am open to anything. Expect to join me on a journey of experimentation with pain management techniques. 

I refuse to be beaten by this. Which is not to say I won’t bitch or wallow sometimes. I’m not superwoman. I accept my body will always place limitations on me. I also acknowledge that I am nowhere near to being at peace with that. I’m angry and sad, but not defeated. I have a very clear picture of the things I need to be happy. It’s just a case of working out how to achieve them within the confines of my illness. Let’s face it, I’ve been playing with a bad hand for a while, but I can bluff my way to a win. 

  

I go a walking…

~ somethinginthewayshemoves ~ 4 Comments

My body has been up to mischief again this week. My kidneys decided that what I really needed was another infection. So, it was more hospital antics & anti biotics for me. 

Somewhere around the 2nd kidney infection I discovered that pacing was by far the most comfortable stance. Having thoroughly scunnered myself with traipsing up & down my hall I thought perhaps I should take my restless body outside. My trusty sister & Seb came to the rescue with a slow walk around the park. 

  

Spring is putting on a fine show & getting out was a good call. Seb had a rare time sniffing, whilst Lauren & I talked about the mens. 

  

I was aiming for heavy on comfort, easy on frump outfit wise. With that in mind I teamed my favourite flowing maxi with waist cinching belt. I also turned to some red lippy to further perk me up. I don’t know why it helps when I feel dreadful, but it sometimes does. 

  
  
Dress – Primark

Belt – AsosCurve

  
  
  
Lippy -Barry M

In every life you have some trouble…

~ somethinginthewayshemoves ~ 4 Comments

  
The first thing I saw when I checked Facebook today was this delightful message. A friend had liked it, which hit a sore spot. Of course I have seen this sort of thing before. The rise of ‘inspiration porn’ is oft discussed amongst disabled & chronically ill folk. We find this trend of objectification disturbing & frustrating & rage inducing & a million other things, none of them positive. We are told in patronising tones that we are amazing for simply existing with a disability whilst simultaneously being bombarded with the message that we must be stoic. Through our pain & struggle we must remain uncomplaining. Take it all with a smile, so healthy, able bodied folk can pat us on the back & declare us inspirational. 

So, yes i’ve seen this crap before. Tried to educate people, been offended & grown just plain tired of it. I think it was such a kick in balls today as I was waking up in a hospital bed. Within the space of a few hours I went from a cinema trip with my sister to emergency surgery in the middle of the night. That is the truth of chronic illness; never knowing what will attack next. 

  
Understandably when I see healthy people declaring the only disability to be a bad attitude I don’t feel good. In a matter of weeks I’ve endured a chest infection & accompanying hacking cough, vomiting, cramping, panic attacks, a weekend of so much pain I barely got out of bed & finally for extra fun an inuigal hernia. That’s without even mentioning the constant chronic symptoms I live with day in, day out. 

I live alone, meaning there is no one to run after me. Sure, I have loved ones to help out with some heavy lifting, but the daily grind of running a house & a life is my responsibility. Cast your mind back to the last time you were really sick. Now imagine feeling that way & having to carry on regardless. Add to that not knowing when the illness will stop or if it may suddenly get worse. Factor in having to carefully calculate how much you can do each day, get it wrong & you could end up passed out in the street. That’s my life and believe me when I say there are times when I feel really quite disabled. 

I’m not writing this for pity or admiration. I merely want acknowledgement. I want it accepted that disabilities are real & varied. I want society to allow those of us dealing with impairments to be pissed off. Our lives can get pretty fucking hard & it’s not always possible deal with that in good grace.

I’m not your poster girl. I’m not your uplifting story. I’m not brave or noble or a motivational tool. I’m just a person playing the game with the hand I’ve been dealt. Stop stealing my bloody aces. 

  

You’ll be on my mind forever…

~ somethinginthewayshemoves ~ 4 Comments

Today always creeps up on me. One minute it’s months away & then it’s here. I dread it’s arrival because I know it will unleash emotions that I try to keep chained up. September 12th would have been my child’s birthday. 

Today should be all presents & cake & surprises. Instead it’s a wound that never entirely heals. Of course life goes on. I live & there is joy, pride, love, but there is always a tinge of sadness. It hurts to miss the milestones & the everyday moments. The pain can catch me unaware & take my breath away. There are times when every aspect of my life feels wrong because this is not how I’d be living with my precious little one. 

  
It’s such an incredible feeling to know there is life inside you. I can’t speak for anyone else, but I knew immediately that I was pregnant. I knew before my period was late & before I took a test. I felt it. It was scary, unplanned, badly timed, but still so right. I became a mother in an instant & that feeling has never left me.

Yes, it’s painful to remember; it also helps. It’s easier for me to acknowledge today. It’s good to talk out loud about the person who changed my life without having a chance to live his. 

If love could have saved you darling, you’d have lived forever. 

This week I have mostly been…

~ somethinginthewayshemoves ~ 5 Comments

Spoonie life can be tough. Meds only do so much, which means you have to discover your own coping strategies. 

Music is one of the things that helps me when my symptoms are unmanageable. Specifically, I like to lie in a completely dark room & play loud soothing music. I try to imagine the room flooding with the sound & let it wash over me. Obviously i am attracted to beautiful music, but for me, I’ve always needed lyrics that speak to me too. In particular I gravitate towards songs that express emotions I am wrapped up in. 

All of this leads me to introduce some new content. I hope  to regularly share with you the tunes that are easing my path. 

This last week has been dominated by women. My choices have been perhaps a little sombre, but that also have a dreamy quality. Without further ado, this week I have mostly been listening to,

I have no idea why it has taken me so long to find Laura Marling, but I am so glad I did. I heard this song, Darkness Descends, in a hospital waiting room & had to shazam it. The lyrics seemed designed for me, as though someone had climbed into my head & taken notes. This song is the musical embodiment  of autum. When I listen to this I feel like I’m wandering out in the crisp, fresh chill of a perfect September day & that’s a nice escape from reality. 

  
Next up is a bewitching offering from an old favourite. Firewood by Regina Spector sounds so gentle, but is really a rousing kick in the arse. With chronic illness there are times when life is too hard. In the midst of a flare when you feel horrendous every moment of every day, you can start think it’s just not worth it. Firewood is basically saying I know it hurts, I know it’s impossible, but you’re still breathing & you have to live. Spector manages to articulate this message without being patronising or dismissive. I love it. 

Spanish Harlem is a song I’ve been playing since childhood. It’s a tune that always made me feel bright & breezy. Rebecca Pidgeon’s version takes it to a new level. The tone of her voice & the more floaty arrangement is lush. I also like the gender switch, these words sung by a woman have a much less possessive feel.

This week’s final earwig is Lana Del Rey’s treatment of Once Upon A Dream. I first heard this when I took my niece to see Cinderella & haven’t been able to get it out of my head. The original Disney version is too sickly sweet for me, but Lana’s dark & twisty take gives me all the feels. This song perfectly fits my brief; it allows me to feel totally immersed in the music.