Hiding in Logs

I feel calmer today. Phil is off work.

A simple thing such as changing GP seems to have caused me a lot of stress. I guess because medicine is a huge part of my life now and collecting prescriptions, keeping stocked up, ordering tube feed supplies etc is a daily thing. I like to be overstocked if anything so you know you are prepared. Some of the meds come from hospital, some from pharmacy, some meds are controlled meds and can’t be ordered online, and some meds need special training and to be pre draw and taken everywhere.

I sometimes genuinely wonder how on earth I filled my days before we had Amy.

My nightmares are still really bad. When all signed up for the GP I need to try and tackle it. I’m waking up panicked and exhausted most days. Last nights one (the bits I remember) were sort of hilarious in a way. I dreamt it was my dads’ Birthday and that to celebrate we staged a zombie escape day. There were 100 “zombies” (people dressed up) and 50 civilians (i.e us). Annoyingly the zombies could track us on these infrared tracker things.. we only got 10 seconds to get ahead of them and they weren’t allowed to run. I refused to do it saying my anxiety was too bad so I stayed at this lodge thing. As the game went on, more and more people returned to the lodge missing chunks of their arms, limbs, all sorts. I started to realise it wasn’t just a game. This then turned into me genuinely fleeing into the forest searching for my family in a frantic panic. People were hiding inside man-made logs unaware that the zombies could track them. It was petrifying. The night before was some sort of torture escape one, and that one really was scary.

Irony by the way – I just had a call asking if we need any feeding supplies. Ha. A while ago I did actually tell them to stop calling.

I overdid it with the lifting of Amy over the weekend. Did lots of helping her walk by fully supporting her body and shifting her weight on each leg so she sort of walks. It’s hard work for both of us but it’s nice I can give her that sensation and also physio recommends it. But my back is paying for it two days on!

Tomorrow I start doing some mystery shopper typed things. I need the spending money.. every time I get a phone bill it’s like arghh. All carers allowance and DLA goes to paying bills and also to all the extra things we need to buy for Amy (probiotics, bibs, gtube pads, stuff like that). Phil works so many hours and that pays for the petrol and all the bills and rent… but I hate feeling guilty if I want a coffee somewhere etc. Working full time weirdly gave me a freedom I never knew I had. Hopefully I’ll hear about the voluntary work soon too.

Anyway. Sort of just checking in. Amy has her EEG today. Her first day back at school after school holidays and the poor thing gets dragged out to have probes put on her head. I am part nervous, but mainly expecting her to not be having seizure activity. I think the big one she had is either a one off, or it will happen in a few weeks or so and therefore not get picked up on. We shall see.

 

Trudging Through the Mud

Life at the moment feels like when you’re trudging through thick mud. You’re getting somewhere, albeit very slowly. Every now and then an obstacle is thrown in to intensify the challenge and you continue because you have no other choice but to force your way to the direction you need to head in.

You look to your sides and the paths of others seem relatively struggle free, if anything they enjoy their terrain joyously with flashing rollerskates on as you wish your shoes didn’t have holes in. The holes let the mud in and start to fill your boot, your socks get wet and the mud adds weight to your already dragging, aching feet.

Honestly. This last few weeks feels like it has added about 20 years age to me. My whole body aches. I’m not getting a lot of sleep. It is either interrupted by crying child, or by my own nightsweats/night terrors.

I woke up today a bit disorientated because Amy isn’t here. She’s at respite. I feel relieved that I don’t need to do the whole lifting, fighting to dress her, cleaning of entire bedding set etc like every other day, but I feel a grieving feeling, and a guilt that she isn’t here. I feel bad that I can’t just do it all myself and that I need that additional help. I rang to see how she is, and she is fine. They said that yesterday was a different story – she was inconsolable, very agitated. Her behaviour lately is so up and down. Since she had that big seizure, and the few weeks running up to it, I have seen a big change in her. She is either almost sedate, non reactive, non sociable, a bit “out of it”, or she is angry… literally ripping her hair out, cutting her face, thrashing around screaming. It’s exhausting to watch, and probably more exhausting being her.

I’ve been struggling to get her the care she needs. The unreturned phone calls, the constant leaving of voicemails, the paperwork, the appointments we’ve missed or had to rearrange. To put it bluntly, it feels like people simply don’t care. We are changing GP. They declined one of her prescription requests the other day, and when I really needed an appointment for myself they couldn’t offer one. I just hope that this next one isn’t somehow worse. Amy has a controlled medication and loads of other ones and I usually need to collect a huge order once every few weeks. Some of her medicines come from hospital because our last GP refused to fund them. So like is usually like one big treasure hunt for meds you don’t want her to need, and also are not sure of the long term effects, or even if they are presently effective.

Whilst I had her yesterday her athetoid (involuntary) movements were uncontrollable. Her arms were like propellers and her mouth movements were reminiscent of seizure activity. I know that she is frustrated – she can’t verbally articulate her wants and needs, so to get her message across it can often come out in the form of lashing out – hitting, kicking, scratching and pinching. Trying to anticipate her needs causes me so many different emotions – frustration, sadness, hope, desperation, exhaustion, so many things. i hope that because we are only 4 years in that one day it will get easier. I am already working on getting her some bigger, and more relevant PECs symbols and though at times it seems futile as she won’t always register them, I guess if we don’t try then things will never change.

I have tried lately to pull myself out of my shell, to try and be my own person more and cultivate some new interests. I was already growing veg (mainly for guinea pigs) and going on lengthy dog walks… but I started rock painting, and also geocaching. The rock thing is getting me down slightly as it seems to be an amazing bonding hobby for parents and their able bodied children. I am still going to try and get Amy interested but right now the awareness just isn’t there and she is quite reliant on music or videos to soothe her. She loves being out and about, but we shall see how we go. I will try to collect some rocks and see if she will help me with painting them. Crafts and baking etc seem to not interest her, but I suppose she wants to do things that her motor skills DO let her do, she knows her limitations and she knows what she likes. Seeing people post how excited their kids are when they find the rocks, or when their rocks are found makes me really happy, but it also shows what we are missing. I noticed lately on our travels that children are starting to stare at her more. I guess the developmental gap is showing, and she is too big to be mistaken for a baby in a pram. I find the best thing to do is to try and open a dialogue with them “Amy, that little boy is looking at you, are you going to wave hello?”. I hate doing it, but I need to bridge that gap and teach people that just because someone is different we do not distance ourselves or stare.

The geocaching is harder because my phone battery dies so easily haha! It is however very exciting when you do find one.

I feel a bit like a tree that has been uprooted from the ground, and my feet are trying to reroot so I can ground myself and feel like part of the earth again. No matter where I go or what I do I feel entirely detached, almost like an alien observing the human species. I can interact with these people, I can forge polite conversation, but then I retreat to my internal monologue “they don’t get it. they don’t understand.”, “you’re annoying people, you’re pointless”. Seeing people park in disabled bays without a blue badge is enraging me… seeing ignorance and lack of compassion in the world is something that affects me deeply. I wish it didn’t, but it does.

You know when you’re a child and you do that thing in your classroom chair when you tip yourself backwards? Eventually you tip it just that notch too far and give yourself a shock… I feel like that A LOT at the moment. That jumpy, on edge feeling that something bad is about to happen. The calling an ambulance thing last week has triggered this, I have never been so scared and shaky in my life… and yet I know there are people out there who do this everyday for someone they love who has medical issues. I keep panicking that someone I love will get suddenly ill, or worse. And I want to constantly know everyone is okay because I cannot bear the thought of something happening to them. There are a lot of incredible people in my life who deserve nothing but happiness, love and success, and yet they are daily having challenges thrown at them. It just isn’t fair and I wish I could help. I feel so powerless to fix so many things that aren’t right in our lives.

I’ve tried improving my diet. I haven’t launched into a full blown diet as that will set me up to fail. But I have gained a lot of weight and am trying to make positive steps to improve. I have lost 7 pounds now in 2 weeks. I’ve taken some “before” photos in the hope that in two weeks I start to see a difference. I think I do already but the main point is to get more energy and feel better in myself… I’m no longer about trying to look amazing… it doesn’t work with my current eczema, anxiety and eye problems! Haven’t even been able to wear eyeliner in 3 days which is unheard of. I am also planning on some voluntary work. The school wanted parents who can help parents of newly diagnosed children, and the idea of making those early and confusing dark days for people even a tiny bit easier fills me with hope. So that will be good. My self worth is shot not having a “real” job. I miss the busy office, I miss the adult conversation and the banter (hate the word banter), heck.. I miss the money!! Carers barely get paid at all, there are no sick days, no holiday, and making plans you can commit to is hard… you just never know what could happen even an hour from now sometimes. It’s lonely, and it’s physically and mentally exhausting.. as I have found to my detriment this week as I have burnt out.

I referred myself for help the other day… it’s a self help thing that I think is linked to the NHS. I did it once already to help me with the grief from the miscarriages but I wasn’t in a place where I could try to fix myself. A few nights ago I had such a vivid dream. I was surrounded by people I know and they said “cez, we have someone here who would like to meet you”, and from behind them stepped out this beautiful little girl. She had long blonde hair, a frilly top, and leggings. She looked so alert and full of life. “Hello, who is this?” I asked. When suddenly, in the pit of my stomach I started to feel sick. “This is Millie.. you never did miscarry… we didn’t think you would be able to cope with another child so we put you to sleep and gave a csection… she has been raised by others for 3 years”. My heart pounded, I felt weak, I almost fell to the ground. The dream then cut to me lay on the grass with the little girl. “Mummy. Why do stars come out at night?” she asked. I pondered with her, trying to think of a child friendly way to explain the world and how it rotates. I smiled to myself at the inquisitive nature of children and felt thankful that I could help her learn about the world.

And then I woke up. Covered in sweat, roasting hot, heart pounding. Another dream about the lost children. I feel tearful thinking about it now. It ignites the hospital flashbacks of the csection, being wheeled a long rapidly in a hospital bed watching the ceiling tiles fly by. It was only half 4, I take myself to the bathroom to calm down and realise Amy’s feeding pump is alarming. I go to fix it and she is lay there wide awake and smiling at me. Life is good. She is alive and well, I can go back to bed for a few hours.

(pictured is my amazing daughter. Who I am lucky to have)

Seizures are Back

Good afternoon everyone (or morning, evening, you know… whatever applies)

I’ve not disappeared. It has been a very busy few months; Characterised mainly by issues with medications and Amy. Honestly, it’s a daily ordeal pretty much. Her cerebral palsy manifests itself in so many ways such as feeding issues, muscle tone issues, involuntary movements, aggression, frustration, neurological irritability and all kinds. She has reflux meds, motility meds, muscle relaxants and so on.

Recently her athetoid movements (involuntary movements) have been particularly bad and we had been trialling a new medication. We were incrementally increasing the dose each week until we met the right amount for her. The side effect was insomnia which then meant another med being introduced to help her sleep. Doses were tweaked, side effects monitored. We started to see a more calm Amy for most of the day but then increasingly a more distressed Amy in the evening. If you’re not careful you’ll get black eyes, nose bleeds, and a fat lip. You’d never believe the damage a 4 year old could do!

So with this and various other issues I was just about plodding a long. School holidays are nice but they are very hard work. The physical input required goes up dramatically, and all day to day tasks become a lot harder to get done as madam is very demanding and doesn’t like not being tended to.

Then it happened. A seizure. A big seizure. Oh it was awful.

We had a lovely day planned with our friends at a soft play centre. We were mainly ready for the day and Amy was in her bed watching videos whilst I got her feed ready (she’s tube fed via a pump). I walked into her room to find her fully unresponsive. She was foaming at the mouth, her whole body trembling uncontrollably, her eyes flickering and her mouth twitching. I have never been more terrified in my life.

Amy had seizures when she was born but was gradually weaned off seizure meds. We made it to age 4 without them reappearing and I had naively hoped that we had avoided this part of the cp world. My instict was to record her so we had something to show the doctors. I rang an ambulance and felt greatly relieved as the seizure tapered off and we waited for the paramedics.

Part way through the ambulance journey she came very much back to life (she had been “postictal” ie post seizure weariness/disorientation). Her legs kicked wildly and she got more and more upset. The pediatricians confirmed that yes it was definitely a prolonged seizure.

We are now waiting for an epilepsy nurse to arrange to see us and to prescribe rescue meds and her EEG is booked for next week. She’s had EEGs before and they’ve always come back as fine. Her brain activity always looks atypical, but never showed signs of seizures. I half expect that the EEG will reveal no seizures and this is perhaps an isolated incident… or that she will have no unwanted electrical activity during the test.

So here I am today. She was in respite overnight last night and today I made sure that instead of getting myself in an anxious flap like I do literally all day everyday… that I would sit and do something different. So I sat and painted rocks. It looks really childish, but I really enjoyed myself. I can’t wait to hide them in a local park for people to find. In our town there is a facebook group for rock painters. When you find a rock you photograph it and post it to the page, and you re-hide the rock. Some children get really excited when they find one, especially if it’s one they really like. I’m thinking my nintendo one will be a hit (even though I forgot to do Gumba’s teeth. Oops). I’m waiting for the varnish to dry and we’re good to go!

I’ve been working hard on eating better lately. I weighed myself for the first time in months recently and got the shock of my life! So far I have lost 6 pounds. I need to start doing weights again and maybe even join a gym if money permits. Amy is getting a lot heavier and even though we do have a hoist in her room, pushing her wheelchair up slopes is becoming very sore on my back! So I’m trying to do it all positively… I once lost 3 stone and got to a super healthy state and you couldn’t pay me to eat cake (unless it was sunday. I was allowed two treats on a sunday) whereas now, I am about 5 stone heavier and feeling very uncomfortable in my own skin. I’m trying not to beat myself up over it, or expect dramatic results quickly.. I just want to make a few better choices, move more, and get more veg in. Amy deserves a mum who can keep up with her energy levels and though she can’t walk she still loves a lot of physical play and I want to be able to take her swimming without my back feeling broken.

In other news my dad recently lost his job. I’ve been worrying about him loads but he’s found some short term work for until he gets sorted. He’s such a trooper. He’s doing 12 hour shifts at the moment and working so hard. My mum had a hospital procedure yesterday and luckily I was free to pick her up from it and make sure she was okay. She’s so brave and puts up with a lot health wise. My mum and dad continue to be a huge source of inspiraion to me. As does Phil my other half who works tirelessly and without complaint to make sure we can all live comfortably. Amy starts school in september so I’ve got some voluntary work lined up. But will also be looking into the idea of working part time in a school… just to get some money in and also to keep me busy and give me some self worth. Being a carer is the hardest job I’ve ever done.. there is no sick days, no holidays, it can be 24 hour and it can be hard to make any plans.. but I do miss a “proper” job, or a more normal life. I used to complain at my old job but really I did have it good and I was very lucky. I just want to make sure that I can help people, give my family a good life, and be the best version of myself that I can be. I still have an incredible amount of anxiety, self esteem issues, insomnia, over thinking and so on, but I am working on it every day in some way.

So that’s it really. Just me checking in with you all. I hope to be more regular with my posts soon. We have so much going on and every week seems to throw something new at us!

 

Click the link to see my latest post for Firefly

Dear Specialist

Firefly Blog

Latest contract piece for firefly

Click here to see my latest post for firefly

Nightmare

Succulent, see

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.

 

No one cares about the carer sometimes

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)

 

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.

My Achilles Heel

Foot pain.

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?