Latest contract piece for firefly
Hi all! I haven’t disappeared. I realise that my posts here are few and far between. I have been doing a few blog commissions for Firefly recently hence my absence here. In addition to that things have been a bit up and down with Amy. We had a hospital visit last week.. nothing serious but she was beyond irritable and had to be checked over etc.
This weekend we are going away. We are going to haven to stay in an adapted caravan. My mum and dad were meant to be coming too but we had a bit of a mishap on venue and they ended up at a different haven location on a different weekend (haha!). Funny now, but wasn’t back then.
I am actually typing this purely in a mission to waste time. We have a guy round doing cctv in the drains. We had this blockage incident at the weekend which meant if any of us needed the toilet we had to take it in turns to go to the supermarket (another “funny now, wasn’t back then). Waiting for him to leave so I can pick up amy’s prescription and pick up some stuff from the shops then hopefully walk the dog.
I woke up with a stinking cold today. So annoying isn’t it. There is never a convenient time to get one but today is especially not good. I seem totally incapable of resting. I managed earlier for literally 5 minutes before I went and sorted Amy’s clothes out. Managed to clear out loads of stuff she has outgrown and also found a friend happy to take them on for her daughter. Feels like a huge win but I really do have a headache. Anxiety is so annoying for this. I can sit down at night when phil is there and I’m too physically exhausted to do anything else.. but other than that I’m whirling around like a fool trying to get things done.#
I haven’t really got any other news… if you can call any of what I said up there “news”. We did complete on the sale of the house which was good… we have been paying both mortgage and rent for the last 6 or so months and it was starting to become a financial struggle. So this has been a huge relief for us and now we can start to finish Amy’s bedroom. She needs a wardrobe and a few other bits as storage is fast becoming an issue. We will be having hoist tracking fitted soon so will be good to have her room ready for that so we can figure out the logistics.
We are that awkward stage now where really she is getting hard to carry… but we can do transfers without a hoist. It’s almost like we are in a transition period. I am struggling coming to terms with the idea of hoisting. I know that in years to come I will look back on now and wonder why I was so upset about it… but it is what it is and whilst I count my blessings everyday I think it is only normal to grieve and wallow. I just try not to wallow for too long as it isn’t conducive to a good outcome.
We’ve had a few pretty traumatic school drop offs and outings lately. I’m not sure what the source of bother is but she is getting very distressed and pretty much undistractable at times and it has tested my patience harder than ever before. My friend took me out for breakfast on wednesday. I arrived at school literally shaking and holding back the tears. Amy had wailed the entire way in and because of traffic it took almost an hour and a half of creeping crawling traffic to get her in. She was bright red in the face, covered in tears, inconsolable. I hear from nursery that her mood and indeed day did improve so that’s good.
This time next year she will qualify for school transport. I am nervous for this and at first was determined that I continue to bring her in but have my own petrol allowance… but after this last week or so I am in no doubt about what needs to be done. Unless of course she is even more distressed with them. My worry is that they may have even less patience than me and I can’t stand the thought of someone being angry towards her. So we will see. Maybe having other kids in transit or her ipad will make it a better journey.
Today I finally got round to planting my succulent and cactus seeds. I have been annoying Phil for ages with my quest for the perfect succulent. I actually did buy some really cute nice ones and have them displayed on the front room window sill but I also have planted some seeds as well. I did it with the idea that really I should have hobbies other than just boring things like chores… and nature and plants are always a good idea. I am hoping to play more games, listen to more interesting podcasts, walk more and read more too.. there often aren’t enough hours in the day and sometimes when there are I am too tired. I don’t want on my death bed to be wondering why I spent so much time doing the dishes… I should be recalling all of the lovely trips I had and hobbies I indulged in and so on. I wish I didn’t spend so much time imagining myself on a stereotypical deathbed listing my many regrets in life… hopefully that won’t happen.
We all say we won’t turn into our parents but I remember wondering why they liked feeding ducks so much, feeding birds in the garden, and growing plants.. and here I am now loving all of those exact things. I’m not a party animal like them though.
I had a lovely walk with my dad yesterday too. I hadn’t seen my mum and dad properly in over a week and was becoming a bit miserable. So when I received a text yesterday inviting me out on a dog walk and then to their house for food I was actually delighted. It transformed a lonely (but needed) respite day into a day of fun and laughter.
I will leave this here so I can continue to bumble awkwardly around my own house trying to work out if this guy wants a brew (he declined when I asked..) and if he is planning to leave any time soon.
I’m so emotionally charged this morning that I am already driving myself to despair.
The trigger? The fact that the world has no respect for the time of carers.
Todays’ example: A guy is coming to look at something in the house. The landlord said he would be calling me to arrange to come round and that’s fine.
So yesterday he calls at 11:30 asking to come in the afternoon. I said well no sorry, I have plans with my daughter already. He sounded all annoyed and inconvenienced and said he would call another time. He made me feel like I was being really awkward. But if it were a full time office job 9-5 like I used to, what would he do then? Would I be the same level of inconvenience? I get that he has people to see and so on, but surely his professional relies on his planning and booking of appointments.
This morning he called saying he was in the area. I was right in the middle of Amy’s daily stoma care. I had her in the shower seat and was doing a thorough clean with dermol lotion and then dressing it as lately it has been a little aggressive looking/leaking/overgranulated, also doing a balloon water change in her GJ. So I text him explaining my daughter has high care needs and that it wasn’t convenient and that I would need him to say a day and timeslot rather than keeping calling on a whim that it might be convenient. I am taking her to respite soon and am just finishing packing her meds and making sure they are labelled etc. So he leaves me another rambling message saying he is busy and will phone again to see if I am in.
NO. I already explained I can’t do it that way. I am not being awkward. If I was in and it was convenient then yes, I would welcome him in, offer a brew and polite small talk. But life isn’t like that.
Today for example I have hardly any voice as I am recovering from a bug. This does not excuse me from all the calls i need to make. Physio wants to arrange to come and assess Amy in her stander as we currently can’t have her in it. I need to phone the hospital to book in a GJ change but also a surgical consult about a possible jejunostomy. I have an electric fault with the car which is affecting getting the wheelchair up the ramp that I need to sort (still) and so on. I have meds to draw up, poopy bedding to wash and all sorts.
My other example is when an appointment gets cancelled in day and no one tells you. Or when an appointment overruns and runs late when you have another to get to. All you get is no apology or your next appointment being awkward about seeing you because you’re 5 mins late when they know full well they’ve left you two hours in their waiting room before now.
Aside from my caring role I have bad anxiety some days. People throwing me curveballs is a major trigger. I don’t like phone calls unless urgent or fully necessary. I prefer an email or text as it allows me to think and plan effectively.
So now, my poor daughter is dealing with the fact I have closed all of the curtains in a panic because I can’t stand the idea that someone will impose themselves on my day when I am in this state. I will finish now and stop being a bad mum and get things done and pay Amy attention.
I just wanted everyone to know that just because I don’t have office hours, or a physical work place other than my home or my car.. that actually I do have my own life and missions and that sometimes I do need people to make allowances for me. I don’t want to be a burden or be awkward but respect what I do with my life. The more you disrespect my time the more I feel worthless and like a sponger when actually I do one of the hardest jobs there is (and I do love it)
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.
Aside from a horse riding incident when i was a child im not sure i have ever been too well acquainted with the nuisance that is foot pain.
Recently, whilst enjoying a nice canalside dog walk with monty and phil I went over on my ankle. I did the thing you do where you look back at the ground to scorn whatever it was that caused this affliction. There was nothing. No tree roots, no stones, nothing. It would seem i had in fact tripped over air.
Bent over in pain and making all of the relevant ow sounds i assessed the damage. At this point my foot looked fine. I put on a brave face and stupidly continued the walk for further 8000 steps or so. Phil could see the agony i was in and asked if i wanted to turn back but i declined. Walks are my main anxiety therapy (after of course medication..), i can almost feel my adrenaline levels decrease with the more i exhaust myself on a walk. It’s like a compulsion, any time i am child free i endeavor to fit in at least an hours walk, the more water based views the better (ie lakes, rivers and so on)
After a few days of worsening pain i was back on the mend. After a couple of weeks i was still a little swollen but no longer in pain except for this odd heel pain that was starting to intensify as the days passed.
since then i have “tripped over air” a subsequent 4 times with varying degrees of severity. A few nights a go i slid on spilt water and could barely get up from the floor.
I finally hit google as i became concerned at my astounding new levels of clumsiness. I have always been clumsy and a bit scatty but this is bizarre even for me.
Plantar fasciitis. I can thank scrubs for my ability to prounounce “fasciitis” with conviction.
It starts each day as very stiff calf muscles. I hobble for the first 20 minutes of the day. Throughout the day i experience a mix of both constant dull ache or sharp pain in my heels (particularly the left one). By ththe end of the day it is throbbingly sore. Im able to walk long distances still. But if i stop for a while then start again i get very sore.
On todays walk i was quite unstable. Any uneven ground rendered me a bit wobbly.
So right now. In a desperate attempt to avoid the GP i have actually elevated my feet, got an ice pack and tubigrips out.. and taken various painkillers. I give myself until tuesday to try and resolve this myself. Google mainly tells me about rest, comfortable shoes, and painkillers. So it seems a waste of time to go to the gp if that’s the sort of advice id get sent away with.
After collecting amys’ new ankle foot orthotics this week and learning about dorsiflexion, foot arches and plantarflexion this all seems a little ironic.
Wish me luck. Has anyone else had this before?
You can laugh, or you can cry. Sometimes I want to do both. Simultaneously.
No I am not having some sort of mental breakdown. Or am I? I don’t even know anymore.
Today I finally mustered up the courage and set time aside to chase up my self help referral. I have tried CBT… to no avail… it wasn’t for me. Clearly just medication and breathing exercises alone aren’t enough for me. I can’t switch off, ever. I can’t get to sleep or sleep well. I can’t stop the constant thoughts. It is an endless stream of consciousness… there is no pause or stop, only play or fast forward. It is exhausting.
Sometimes I think I am just being a bit dramatic and that my daily stresses and strains are equal to everyone elses. But then mornings like this morning are a reminder that this is far from the truth. Continuously broken appointments, frequent heavy lifting and manoeuvring, beeping problematic machines, non stop phone calls throwing problems at me. Logistics, plans, everything. Too much.
I don’t want to go into details about it all at risk of 1) making myself get all worked up again or 2) it being read by the wrong people and me getting in trouble.
We’ve had a few things arranged recently whereby people haven’t shown up. Or what was promised was not delivered and has left us in the lurch.
Imagine my consternation up on chasing my referral to have to leave a voicemail and receive no return call. The thoughts begin “why do I bother? No one cares. You’re wasting your time. why can’t you just cope. Why are you pathetic, how do you even have friends? Why can’t you just calm down and breathe like everyone else?” Ignore, ignore. The thoughts prevail. The seep into your everyday activities, distracting you from your task in hand.
Walk it off. Lower your adrenaline. Have a glass of water. Just breathe. Just breathe. Don’t keep checking the time. You have plenty of time. Enjoy this moment. Boom, sudden thought about losing a loved one. Why? Why brain? I am already stressed, please don’t do this. I become consumed at the thought… text that person, check on them, let them know how much you mean to them. Text sent. And so on.
My brain is so tired today.