Blue, I love you…

Dear Son,

Today has always been hard, but this year is worse. I always thought I’d give you siblings & they would help remembering you to be less painful. It never occurred to me that I would be reliving your loss over & over again. I hope they’re with you. I wish you were all with me. I’ll always love you.

Love

Mum

Sapling in moonlight

Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

Look back in anger…

I’m angry. So angry that it’s hard to contain. The problem is there’s no specific target for my rage. It’s a generalised, tear everything down kind of fury. There’s no release. I can’t spew my anger over unsuspecting bystanders. Keeping it in doesn’t feel like a viable solution either. Where does one put all the free floating resentment that no one is actually to blame for?

Life isn’t fair. I came to terms with that fact a long time ago. I’ve accepted a lot of bullshit. Fought crazy & illness & disability & mistreatment & loss to build some sort of something. I’ve struggled, but I’ve rolled with the punches as best I could. There’s only ever been one thing that I’ve felt I couldn’t do without. One single imperative. When you’re willing to get by without so many things, it feels so desperately unfair to be denied the thing that would make it all ok.

I watch everyone around me do the thing I cannot. Some with such ease it leaves me breathless. For others it’s a harder journey, but they reach their destination. I love those people and I love their babies, but it’s so hard to be the only one stranded.

I’m angry that I have to do this again. I’ve been tricked into hoping. Now I have to deal with the fall out. I am mad at myself for being stupid enough to believe. I resent having to submit to medical interventions. I didn’t ever want to hear someone say they can’t find a heartbeat again or look at another bloody speculum. I’m furious that I’m still bleeding and that I have to cope with all that triggers. It’s agony to be constantly reminded that my body has failed again. It’s exhausting to face the nightmares and flashbacks of all other blood. I don’t want to relive each of the worst moments of my life whilst trying to get through this one. I’m sick of blood tests and transfusions and putting on a brave face. I hate that I don’t get to opt out. I’m not strong, I just don’t have option of walking away because it’s too hard.

I don’t understand why it has to be me. Why my babies keep dying when I want them so much. Why does the universe give life to those who can’t or won’t love their children? Every time I read a horror story of abuse it feels like a personal attack. I think of all those terrified pregnant teens, the adult women who can’t feed another mouth or just never wanted to parent and I wonder why it couldn’t be me instead. I’m not angry at the individuals; everyone should have the right to choose. I’m furious at whoever or whatever makes decisions. What could I possibly have done that disqualifies me?

I see people smoking as they hold their child and I have to restrain my scream. Each impatient, inappropriate or lazy exchange between a parent & child kills me. Even the standard complaints about bring tired and tantrums make me feel like punching someone. I know I’m not being fair, but it’s like bitching about your diet to the starving. Don’t they know what a miracle they’ve created? How can they forget how much that little person needs them to do the right thing. I know it isn’t easy. Kids are exhausting and all consuming, but they’re worth it. The joy outweighs the sacrifice.

I’ve had enough therapy to know that burying your feelings is never helpful. I know I can’t dig a deep enough hole for this much emotion, but I have no idea where else to put it. I can’t lose it with every person who is rude or mildly inconveniences me. I have no desire or intention of venting on the people I love. I used to work this shit out with a scalpel. That’s no longer an option. What do I do?

Blackbirds singing in the dead of night…

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 am doing 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 if the many, many things on my list I might feel a tiny bit less anxious. 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 it all 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 anxiety 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 a thing that isn’t grey or edgy. 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 m & I’ll have to talk myself down. Fool myself into 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 easy. 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…

 

All I can say is I’m breathing…

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.

Don’t patronise me…

I’m struggling to sleep tonight. My  pain got a little out of control last week & so my dr upped one of my pain meds. It was quite a big leap & my body hasn’t been behaving since.  My mood hasn’t really been behaving either. It took a dive earlier in the week for, I imagine, a combination of reasons. Perhaps feeling so bizarre, or the pain or an upcoming anniversary. Who can say?

On account of the above there have been days when even getting out of bed has been difficult. Yesterday was one those days, everything hurt & I was very foggy from the meds, but things had to be done. Bronan had to be fed. I had to return some important calls & I had to put my bin out to be emptied.  Dragging myself out of bed was a struggle, but I did it. So, up I got, flung on whatever clothes were lying on the bedroom floor, brushed my teeth & completed those tasks as best as I could. I did these not because they would lift my mood. Nor did I do them as part of an ‘action plan’. I didn’t derive any sense of achievement. They needed to be done, so I did them.


Later, I tried to write, but couldn’t concentrate for more than a minute or two. It occurred to me that I hadn’t eaten all day & perhaps something in my stomach might counteract the effect of my medications. My fridge contained some broccoli that had to be used today or it would only be fit for the bin. So, I steamed that broccoli in the micro, poured some boiling water on noodles & flung soy sauce over both. I didn’t cook because it would make me feel that I was worth taking care of. I simply used the ingredients available to feed myself in the quickest manner because otherwise, I would not eat.

I tell you these things not because they are interesting. I certainly don’t mention them because I want applause. I merely draw your attention to these mundane activities as they are the reality of day to day life.
THEY ARE NOT SELF CARE.
Mental health organisations & increasingly, just anyone are constantly spouting the merits of self-care. I am so tired of hearing this bullshit. Everything I do does not have a therapeutic purpose. Mental illness (or for that matter physical) does not define me. I am a single woman living alone. There are always tasks that need taken care of. I take each day as it comes & do as much as I can manage. That’s just survival. In that respect I am no different from anyone else. Obviously my illness can make simple jobs difficult. Things the average person may take for granted come harder to me. That doesn’t change the nature of life. I either keep living to the best of my ability or I lie down and die.

To label each chore or treat self-care is to rob me of my basic humanity. I am no longer a person, but a collection of diagnoses’. Illness becomes my defining feature. I strenuously reject that characterisation. To measure my wellbeing by how many dishes are in my sink is insulting. Similarly, to minimise serious conditions by suggesting a nice dinner will make it all better is also offensive. A cute badge with a star & I took my meds or A childish phrase is not going to brighten my day. 

I live my life as fully as possibly. I enjoy whatever I can and try my best to endure the rest. Doesn’t that sum up most people’s experience? I don’t hear anyone congratulating ‘non-mentals’ or ‘non-spoonies ‘ for continuing to exist, so why are they patronising me?

If my thoughts on this offend you, then just imagine how I feel when several times each day I am confronted with the cult of self care. If it works for you, cool, you do you. However, don’t suggest I have a bath with candles to get over terrifying flashbacks. Don’t tell me to give myself a wee treat to combat searing pain. Most of all don’t belittle me by suggesting my daily drive to survive is ‘self care’. Keep it to yourself, darling or prepare for my wrath. 

Sending out flares…..

I’m in the midst of quite a bad flare. Please excuse my scarce blogging. New posts coming soon. In the mean time you can enjoy my writing over at The Swag Guide.

I’ll leave you with some pics of some of the family pets. I love these wee faces, I defy you not to. 

  
My sister’s boy Seb giving me a soulful look. 

 My brother’s boy ringo having a wee snooze.

  
And my darling boy refusing to get out of bed.