May Your Head Stay Strong When Your Heart Feels Sad

Every time I’m feeling particularly sad I think to myself “my heart feels sad.” I know that probably sounds pathetic, but that description is the most fitting way to describe how I feel.

I feel a tiredness that can’t be cured by sleep. I feel troubled by all of the things wrong with the world. The nasty things people do to other people. The fear I feel for vulnerable people. The sick to my stomach feeling of knowing someone else out there might be feeling the same level of emotion that I currently feel.

Today was hard. I couldn’t settle Amy. She was upset and angry all day. She could be distracted now and then, but it was clear to me that something wasn’t right. I could see she was tired. I could see that she was frustrated. I wondered if she was feeling discomfort or pain. I wondered if she was absorbing my frustration and impatience that I couldn’t help her.

I sang to her. I showed her videos. I showed her toys. I gave options. I gave calpol. We went for a wander. We went home. We tried everything. Well, everything except whatever it is I could have tried to help her feel better.

She is almost 6. But she’s non verbal. Sometimes I understand her. But sometimes I don’t. I hope in time this improves, I feel like such a failure when I can’t meet her needs.

She’s at respite now. I feel guilty, sad, and I miss her. I hope she is happy, and doesn’t feel abandoned. I hope she’s having a nice time. She’ll get lots of attention there, and a nice bath (something we don’t have at home). I won’t see her now until Monday after school (providing she stays well.. I did see a few seizures today.).

I hope she knows how much I love her. and how sad it makes me when she isn’t around. I’m like a mood ring.. whatever emotion she feels, I show it too. If she smiles, I smile. If she cries, I cry (internally). When she’s frustrated, I feel it too.

I’m not really sure the point of this post. I guess I’m trying to make up for the fact I haven’t had any counselling in ages. This morning I felt like I couldn’t breathe.

Today my mum received a birthday card. It was a nasty one.

It said something about another year another chin and said happy birthday you fat ****. On the inside it said “the front of the card says it all!” love sue it said. It wasn’t sue… I know who it was exactly. And I am sick to my stomach and furious. My mum deals with so many autoimmune illnesses. She is selfless, loving, kind, and doesn’t deserve to be bullied. The person who sent this is the same person who once left a nasty note on my car. They were fully unjustified in doing this and did it because they have anger issues. I could tell you a lot of stories about these people. But I won’t because I’m not stooping to their level. I know they’ll be sorry because they have no friends are nasty lonely narcissists. They’re just upset that my mum saw them for who they really are, if there is such a thing as karma they’ll get their come uppance anyway.

I cannot stand bullying. I cannot stand people being unkind to each other.

So right now I am feeling really quite anxious and low.

 

Latest Blog for Firefly

Hey all! I forgot to share with you my latest piece for Firefly. It’s had an amazing reception on Facebook and I’m really humbled and grateful. Thanks 🙂

To the Man in the Supermarket Who Unknowingly Turned my Week Around

 

 

Bus lanes, PEG ends, and other delights

Has it really been a whole month since I wrote a post on here? Isn’t time an abstract concept (yes).

The last week has been utter chaos. In fact the last month or so has been.

Amy had her jejunostomy surgery at Sheffield hospital a few weeks ago. We were only in 3 nights and she’s healing well now (after an infection needing antibiotics). It’s a huge weight off my shoulders the surgery being out of the way. It’s currently a PEG, which will need an op to be changed into a button further down the line. The hospital was incredible. They managed to source a suitable bed for Amy and the facilities were next level amazing. The surgical ward is only about a year old and it’s almost as if they consulted families like ours on what could be useful. Like for example, a safe, a wardrobe with coathangers, a bed that turns into a sofa with barely any effort, a cupboard full of syringes, gauze, bedding, blankets. You could even order food to the room for the parent or carer… usually I end up on the verge of a UTI from lack of water.. and I struggle to even get cover so I can go for a wee. So yeah, everything was very well thought out and had it not been that we were there for surgery.. it would have felt almost like a holiday. I am so thankful to everyone we met. I cried so many tears of relief when the surgery was done and I knew that she was okay.

Prior to the surgery she had a 3 minute seizure which had us worried. Luckily it stopped by itself and she didn’t need rescue meds. So scary to see.

So anyway. That’s that.

Last week I accidentally got some shoes delivered to my old house. I asked the mechanics who work opposite the house if they’d get the package for me. They obliged. They gave my number to the guy who now owns the house and he rang me from a withheld number to tell me that bailiffs have been round asking for me.

I was utterly flabbergasted. I am annoyingly law abiding and I don’t like owing anyone even a penny. So I immediately called the debt collector.

So it turns out,  last year I drove through a bus lane on Oxford Road Manchester and had been sent a fine. They sent the fine to the wrong address which means I missed every warning and call. I now owed them a whopping £482.

I cried and cried. I couldn’t believe didn’t know sooner. I wish I had known sooner.
I remember the day I drove down the bus lane. We had been at Manchester Children’s hospital. I got to the end of the bus lane and saw the sign and was like “oh no, was I not meant to drive on this road?”… I’d never intentionally do it. It was a mistake.

Turns out 300 000 other people have been fined for driving on this road. It isn’t that well sign posted.

My driving license address is correct, the DVLA have the right address. But apparently it goes by the log book and as our car is leased through the motorbility scheme that’s how they got the address. I was mortified.

My dad pointed out though that had I killed someone – they would have got the right address then. So why is this different? It seemed so unfair.

I know I probably could appeal it and pay a smaller fine. People keep telling me to contest it and fight it. But I just can’t. Physically and emotionally I am so tired. I don’t want to panic every time post arrives to see if my appeal has worked or not. I want to close the chapter. So I agreed to pay £50 weekly and £100 up front.

When you’re a carer it’s impossible to get extra money sometimes. I can’t do over time. I can’t take on an extra job.

I did leave my number and address for the new occupants, but they lost it apparently. Though I’m pretty easy to find on facebook. He said he would whatsapp me his number later on so I could send my details – but he never did. Oh well. He must think I’m some dodgy criminal.

It absolutely ruined my day. I had been brewing an emotional wobble for a while because Amy has been having a lot of seizures, and she has been distressed. This tipped me over the edge. They then called me again later to tell me their system isn’t working and that instead of the money going automatically each week I’d have to manually send a bank transfer. Ugh.

I then got a call from school to say Amy’s PEG end had snapped and they couldn’t feed her. I had no idea what to do. We’ve always had a button, never a PEG. When a button goes wrong I fix it from home. When the GJ went wrong we’d go to A&E Manchester. This was a new one.

So I made quite literally about 20 calls. To different departments, different hospitals. After a lot of emails and calls I was told if I could get to kingsgate (it’s a big multipurpose building in Stockport near us) they had two spares. I had to get there fast before it closed. My heart was pounding. I needed Amy home from school imminently to quickly load her into the van and rush for the parts.

Life travels so fast sometimes that you quickly drop the thing you were dwelling on earlier and deal with your new set of cards. My anxiety from the bus lane fine had diminished and been replaced with more pressing matters.

We got the parts, got home, and then I had to figure out what to do with the damned thing. I had my friend in text conversation with me talking me through it. Things weren’t helped by Amy’s meltdown. She was kicking me in the head and swinging for me unstoppably. I’m not sure why she has these moments. I don’t know if they are due to frustration, a form of communication, a type of seizure, or if she’s actually not in control. I do know that it hurts when you aren’t quick enough and you get a boot to the jaw!

It’s silly how you have to be signed off as competent for suction, nebs, tube feeding etc.. and yet here I was untrained in this particular procedure, on my own with my child, frantically trying to make it so she could have food again. But I did it in the end. It was actually pretty simple, but a bit fiddly. Why couldn’t they have sent us home with these just in case?

Then on Saturday I was out with family and Amy was in a bad way. She was inconsolable. My family are amazing and take her away for a little walk so I can eat my breakfast and they can try and calm her down. When she came back I realised she had broken her wheelchair. She had entirely snapped the pummel/pommel and had slid right down to the point of being almost strangled by her chest harness. I quickly lifted her out, repositioned her as safely as I could… I then realise she needs an urgent nappy change. This is getting harder to do whilst out.

I somehow summoned the inner strength to suppress a panic attack. It was all too much. I wanted the ground to swallow me up. It seems like sometimes even when I give life my 110% it still smacks me in the face and tells me it’s still not enough.

We went to respite where I managed to change the nappy safely, and assess the level of damage to the chair. The out of hours guys deemed it an impossible fix without going to wheelchair services. So first thing Monday morning we went to wheelchair services. I cancelled transport. I felt so bad on Phil who instead of getting to rest and have a rare chill… we were being forced to join rush hour traffic and ambush WCS unexpectedly. They were amazing with us. The manager was gobsmacked at the level of damage to the chair. “It’s cream crackered” he declared. Broken in too many parts. They gave us a brand new chair and are booking us in for in 4 weeks to get it properly adjusted.

He said that she may need the next size up chair but if we do – we will need a power pack as apparently this chair is incredibly heavy. A powerpack is £1000. Another thing to fundraise for.

We are currently trying to get a grant for a urzone safety sleeper for Amy. We have £3300 but need a further £1100. So I am still waiting to hear about that. It stresses me out that there are things my child needs that we simply cannot provide ourselves. It’s quite demoralising really. I hate being in a situation that is out of my control. I’m not materialistic at all. I just want the basic things we need to function as normally as we can.

Today is epilepsy awareness day. Yesterday was cerebral palsy awareness day. March is brain injury awareness month. I struggled to even post for CP day because ironically we were too immersed in cp related challenges to even reflect on the day and raising awareness. It turns out my awareness levels are pretty high. The seizures recently have been so varying. She has so many types. I feel it has robbed us of a lot and I wish so desperately I could make things easier for her. We are due to add a new anticonvulsant and wean her off one of the others soon. It fills me with both hope and dread. I hate the side effects. I wish when there was a problem you could just fix it.. but epilepsy isn’t like that.

If a window is dirty. You clean it. I thought if you had seizures you had a medicine. It isn’t that simple. It’s so much trying different meds, tweaking doses, trialing combinations, working out patterns and triggers and so on. It’s like it managing her movement disorder, or managing her feeding problems. None of it is an exact science. It’s scrambling in the dark for a light switch.

As an upside to the post – If you’d told me on Friday I’d be this calm today (Tuesday), I wouldn’t have believed you. I fully believed I was about to enter in to a severe mental breakdown that I wouldn’t be able to pull myself out of. Life day to day is already pretty hard.. the lifting, the meds, the seizures, the lack of sleep, the crying… my horrendous eczema, my current agonising stomach pain, my worries about money and fundraising… that when you end up with a broken PEG and broken wheelchair.. that can be enough to send you over the edge.

I don’t want to show off, but I am really proud of myself. I’ve been having a lot of nightmares and NICU flashbacks recently, I’ve woken with my heart pounding and covered in sweat. It’s a hard thing to shrug off and carry on like life is fine.

I had counselling today. For the first time we did it whilst on a walk. Monty loved it. It was really good. I cried but not much. I tend to keep it in unless I’m in the middle of an especially bad moment. Not helped by the fact I ran out of venlafaxine the other day and can’t get more until tomorrow.

I’ve found it hard leaving the house lately. It isn’t something I can just snap out of.. it’s a very real problem. Yesterday after the wheelchair fiasco, we went to the shops. The tannoys felt ear piercingly loud, the lights seemed to bright, the self checkouts and scanners were deafening. There were so many people in my space I felt like I couldn’t breathe. People were moving suddenly and unexpectedly without warning and I felt like I just needed my bed. I wanted to be face down into my pillow with my eyes shut. I was so relieved when we eventually got home. We’d even been to the pharmacy for clobazam for Amy and it STILL wasn’t there (first agreed to it on March 7th). I could go today to get it but I can’t face it. Leaving for counselling was enough.

When Amy got in from school yesterday she was in a really good mood in spite of the 3 minute seizure she’d had in school. She went on her swing and was so happy. We played with all of her favourite electronic books and watched  youtube until she got over tired and went to bed. It was a lovely reminder of why I carry on. Her and Phil really are my driving force in life, and even though I spend a lot of time moping and wishing things could be easier, I have so much to be grateful for.

Also – On Sunday Amy watched an entire film!! We watched Coco. I’ve wanted to watch it for ages. It was even better than I expected. It definitely made me cry too. Can’t wait to watch it again.

On Friday I am attending my first coffee morning at Reuben’s Retreat. It’s a big step for me as my social anxiety is currently quite high. People who know me always think I’m quite confident and outgoing, but it’s definitely a front. Socialising takes a lot of energy and I’m easily drained. I worry what people think, I worry I talk too much, I worry they’ll think I’m weird, I’m worried my being honest will scare people, I’m worried that if I ask too many questions I’ll seem nosey or overkeen. I know that it’s not going to be a negative experience, I’ve met the people who run it and they’re really welcoming and lovely. I also know everyone there will be nice. It’s just myself I worry about.

I seem to forever dip between wanting to be alone, and feeling lonely. (cadiac to that is that I always want family with me. I’m talking more about things like nights out or coffee mornings or a trip to the shops). I often want to shut myself away and do my own thing in my own space. But then it gives me time to overthink and panic.  So I’m trying to get a good balance without destroying what little energy I have.

I want this year to be the year I make more effort with charity. Swanbourne, new life, PEEPS, Reuben’s Retreat, and just every charity that has made itself an important part of my life now. I haven’t got the money to do it myself, nor do I have time to commit to something – life has a habit of throwing ambulances our way etc. But I did buy some plain cards and intend to decorate them up a bit and sell for charity. I know it’s only pennies, but pennies make pounds and money helps people in hard times. My efforts haven’t paid off yet as I still haven’t pulled up my head from the sand and faced my tasks I promised myself I’d carry out.

There’s things too like painting walls and fences that need doing here. But again, time and money.

Also recently I’ve had this urge to get more tattoos. I definitely cannot justify or afford that right now. Will have to do as many blog contracts as I can to maybe save up. It seems a waste of money to me when there’s things it could be better spent on. But also I know how happy it would make me. What a quandry.

I won blogger of the month with Firefly. Really pleased as it was a post I thought might spark some controversy. Here’s a link to it if you fancy a read: “Am I too Easily Offended”

I am loving the spring-ness around us. Daffodils, birds, fresh cut grass to smell. I love spring and autumn. Not a fan of summer/hot weather though. I like being pale and cool. Not red, under dressed and hot. It’s mother’s day this Sunday but phil is at a stag do. Easter soon too. Not really a holiday I enjoy because my child doesn’t eat or care for hunting things.. we will celebrate in our own way. We aren’t religious anyway so I guess it isn’t a big deal. I do love an easter egg though.

Anyway. I am rambling now. Apologies to anyone I’ve cancelled on recently or anyone i haven’t replied to. I’m working on it all.

 

Medical Frustration

Medication Frustration

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The Tricky Path

Finding my footing, navigating my way a long a tricky path. The mud sliding beneath my feet as I feel deep regret for once again making the incorrect choice of footwear for this venture. Using the chunky roots of trees to provide me traction to prevent me from falling to my knees I make my way a long. I navigate myself around the puddles as best I can, inevitably immersing my shoes in a thick cake-ish brown. I want to look up at the trees but for fear of losing my ties to the ground I make do with the occasional glance.

I glance up at the trees. “Nature, you crazy” I think to myself as I consider reaching for my camera at almost every tree I encounter. I have always been fascinated by the less conventional looking trees; the ones that entwine their branches round the trunk of another tree; the ones whose branches twist and contort ever reaching up and up towards the sky. Each branch competing to feel bask under the warm blanket of light from the sun.

I look down again. I got clumsy. Walking uphill and thinking to myself how much a steep incline is symbolic of lifes struggles. Making my way to the top I can feel myself gasping for air. Not through lack of fitness, but because sometimes I forget to breathe properly. I take in as much air as I can, I can feel my lungs expand. Instead of considering breathing exercises and how this should be a calming ritual I reflect on my own fragile mortality, I think of how grateful I am for functioning lungs; I berate myself for not even remembering to breathe properly. I acknowledge that berating myself for not breathing properly is not conducive to good mental health and I look for distraction.

I look to the river. I will always gravitate to places with water. I love how both tranquillity and chaos can exist side by side so cohesively. The river is flowing fast today, it must have rained last night. The effects of yesterdays weather on the river are controlling its function today. The fast flow now reminds me of a fast beating heart, the panic, remember to breathe. Just breathe.

My dog runs onto the sand at the embankment of the river. I smile to myself. He is so silly and happy in life. I wish I could be more like him. For a moment I am reminded that it is these little moments in life that make it happy and I am so grateful for such a companion in my life. If it weren’t for him I wouldn’t be on this walk, I would be elsewhere entirely; probably indulging in one of many bad coping mechanisms… over eating, too much caffeine, and over thinking. It is good to not be afforded the luxury of over thinking as today I have found it all too overwhelming.

A small stone wall that has mainly fallen away reminds you of some kind of ancient relic of the past. Perhaps placed in Victorian times or even older. This causes me to feel nostalgia for university days, losing myself in a book. Something I no longer have the concentration for. Another moment of berating for not enriching my life how I used to. For turning to the convenience of television, favouring the art of doing nothing, of not having to build the pictures in my head for myself. An old church, a rusty gate, a well. Tremendous.

They say in life that nothing good comes easy. But lately I feel that nothing at all ever comes easy. That almost every interaction on the phone with a stranger will have a negative outcome. That every letter through the door is another “to do” to add to the list. That every requirement of medication will involve copious amounts of outbound calls to people who are being paid to talk to you but not paid to care. That every interaction I have will reflect back at me all of my pitfalls. I will withdraw into myself and excuse myself from social functions. Or I will go the opposite way and require someone. Misery loves company. But on those weeks every reaching out to a friend comes back as a reason they cannot see you. You have no choice but to feel it a personal attack, that you aren’t good to be around. You agree with this, you don’t even want to be around yourself.

Your thoughts enter a downward spiral and you think about how unfair life can be. Why am I like this? Why was I given the challenges I have? The glowing yellow in a field beyond the trees catches my eye. I am distracted again. I don’t know much at all about flowers, they always make me think of my mum and grandma who both share a passion for them. I note that these flowers are most likely weeds and yet they are so perfect. I get my camera out and take some pictures; the quality doesn’t do justice to the vivid colours, even with a filter.

Every able bodied child passing by on a scooter or eating a lolly feels like a slap to the face. You don’t want to feel like this. You celebrate what you have. But you are more than welcome to note the heartache that you so often feel too. This wasn’t what we asked for. This wasn’t what she deserved.

Last time I lost my footing I sprained my ankle. This injury resulted in a further few sprains. Always try to look where you are going. They don’t look too far into the future on this journey, but it is hard not to. I feel like a burden, a martyr, a bit of a fool. I fear that those who love me will realise my lack of worth and deem me too high maintenance to handle. I know that this won’t happen, and yet I still hold that fear and let it keep me awake at night.

I look up at the trees again. I start to see signs of autumn – the big season of changes. Where the leaves flourish and morph into glorious shades of golds, oranges and reds. It is only August, but you can’t wait to immerse yourself in this rich display of nature and try to pretend that for just that little moment, this is all that matters.

I am home now. It is night time. I get into bed for an early night. There have been too many nights of disrupted sleep. Surely this is my night. Immediately the effects of restless legs take place. The irresistible urge to stretch possesses me. I toss and turn, getting more and more frustrated with myself. Physically and mentally exhausted I continue long into the night to try and muster a few hours good quality sleep.