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.

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

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It Occurred to me Recently

That life is fragile. I know we all know that but I’d say lately more than ever I have felt this the strongest I have ever felt it.

I turn 30 soon. For some reason a lot of people attach a lot of meaning to it and it has sort of become a bit of a stigma. “By the time I’m 30 I want to have…” sort of like an early mid-life bucket list.

My issue though is this. As someone who has a compulsion to overthink, overanaylyse, and ascribe meaning to everything… why do we place so much value on lives when they have ended? When you tentatively click maybe or cant go on a party invite… woule you have that same response if it was to rsvp to a person’s funeral or memorial? If so, why?

Is it because you are in day to day mode trying to juggle different responsibilities? Is it because of logisitics ie childcare or work responsibilities? Would those things apply again if it were a funeral or would exceptions be made and plans in place?

Your attendance to that funeral matters far less than your attendance whilst that person is alive. It’s about making that person know that their life has value whilst you are there to show it, not when they arent there.

Do we care so much when someone is gone because it highlights our own shortcomings? Is it a reminder or the times we werent there so we go to feel better about it? I know not always. But sometimes.

Is it because in a moment of assuming immortality we think there will be a next time? We become so complacent in routine that this time doesnt matter, there will be other times.

I am guilty of all of this myself. I dont say this to call anybody out or make anyone feel bad. I post it probably because lately ive become quite introspective, with that usually comes heightened anxiety and awareness. To think of people leaving their home and to never return because of an attack petrifies me. Those who know me will already know what an anxious wreck I can be… lately this is intensified. I feel a level of perpetual but subdued grief, but simulataneously a level of desperation to have purpose, to feel value, to help people. But anxiety can be debilitating. I can think one thing and do the other.

I can feel an urgency to complete tasks and yet be barely able to move. I can feel a desire to just lay face down in a pillow but be frantically working through a huge list of jobs. There can be a colossal disparity between what i feel and what i do. I hope soon this will change. I have plans, i have value, i have a purpose. I dont want to live feeling at any moment I or indeed anyone around me could die… but I do want to make sure all of these people, including myself know that they matter, hugely.

When upset and unable to process things I tend to end up writing. So here I am. Sat in my old house, empty and moved out of, almost ready to sell.

I am upset today because of what happened in Manchester. Not just that, but the devastating trauma so many have been through at this time.

When I realised Martyn was missing I thought initially “I’m sure he will turn up” and stayed in denial. How could something so inconceivably unfair and awful like this happen.

I didn’t know him well at all. But he definitely touched my life and I will never ever forget the impact he made on me. He made english class in college so much fun. He has a real positive energy and charisma about him. He always looked amazing and he could always make everyone smile.

I remember my surprise at seeing him on come dine with me and tattoo fixers. I remember when he helped his mum sell out her etsy shop. I loved every upload he did about emily bishop, every costume/dressing up event, every funny annecdote he shared from life.

Like i say, i didnt know him well. But he always inspired me to love life more and to have more fun. I am so sorry this happened, my heart aches deeply for close ones at this time. Know that this beautiful person made a big impact on a nervous college girl and will always be remembered fondly. I have not one bad word to say about him. Rest in peace. I hope mariah and coronation street fill your days in heaven.

If i see any fundraising for martyn or indeed any other victims of this atrocity i will put the links here in my blog.

Finding the Balance with Anxiety

I think part of the problem with my current level of anxiety is managing my expectations of myself and coming to understand what amount of emotion (or lack of) is normal. When I take my daily medication (sertraline) I am always so aware that I am purposely opting in to changing my brain chemistry. The more I think about it the more I freak myself out and then I end up overthinking about what is normal and how do I know what I am doing is right, and how do I know this is making me better and not just numb or placid.

When I am anxious (which I am pretty much all of the time) I am SO tense. I remind myself constantly “breathe properly” “loosen your shoulders” “relax! Stop being so uptight and on edge” “Just sit down for a bit and do nothing”. I do those things… but before I know it I’m back at the edge of my seat with a tight chest, checking the time constantly, checking my phone constantly, pacing around doing productive things and then rushing around because I simply cannot sit still. I have become a terrible car passenger… I cling to the door, I panic over any potential threat and thud down hard on my phantom foot pedal… I often arrive at my destination flustered, relieved, sick.

To someone not suffering with anxiety it can make them think you are just neurotic, inexplicably uptight, over emotional, irrational, flaky, unreliable, and so many other things. Yes to a degree I am all of those things and more, but I am also kind, caring, thoughtful, fatigued, guilty, sad, and many other things. It’s so hard to explain to someone who doesn’t understand and it is easy to lose friends. I know… I won’t drive on motorways.. that is just one of the things my anxiety prevents me from doing. I have a few close friends who are so empathetic towards these things and really cater to make sure I can still feel a bit “normal”.

I get a bit obsessive about touching buttons and handles that aren’t in my house. I am fully aware of how ridiculous this sounds… but this doesn’t stop that feeling of panic. Much like the panic I feel when I am in a busy shop… the tannoy is going, there is hustle and bustle, my child is crying, her feeding pump is alarming, and I have 100s of thoughts running through my mind. The lights seem to bright suddenly, someone bumps into you, your child starts to cough.. it can sometimes only take one little trigger to send you into a bit of a breakdown. I am getting much better in those situations now though thankfully. It has taken a lot of effort and energy. I see a lot of memes about anxiety and getting stressed about getting stressed – and it’s totally true. Even when things are absolutely fine in that moment I am still panicking inside worrying if my parents are okay, if I locked the door, if Amy will need more surgery.. anything and everything. It is an all consuming monster.

Medication has been a saviour for me. Going to the doctor is not weak, it is quite the antithesis. For a while it felt like admitting defeat but actually it was foolish of me not to have gone sooner. Finding the right dosage hasn’t been easy… I have tried a couple of different medications with varying outcomes and some nasty side effects. I think the side effects I hated most were the headaches, nausea, numbness, seeming distant to others and the jaw grinding. I seem to have got myself to a place where the benefits outweigh the side effects and I think the dose is right. Though I am convinced that overeating is one of the side effects and I am now having a battle with the bulge worse than ever before. I’m not on maximum dose, I was offered it – but for now I would like to keep it where I am so I know that if things get desperate there is scope to increase it.

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I also started CBT (cognitive behavioural therapy) recently. My health visitor and various other professionals have been imploring me to for some time now and the stubborn part of me is still a bit adamant that I can get through this myself. I am a very open person, I wear my heart on my sleeve and have no issue talking about my problems. I find a lot of my issues are circumstantial and that my anxiety has been exacerbated by things out of my control. So I didn’t feel that CBT would be a benefit.. but then the panic attacks came back. I have had a few in the last few months and they are a very real and very frightening thing. As soon as they appeared in my life I knew it was time to seek extra help.

My first session was okay. Not what I expected. For some reason I was expecting the archetypal illustrious looking office, a bearded psychologist, a maroon chez long sofa for me to drape myself over. Perhaps an antique effect globe, large overpowering bookshelves towering over us… teeming with various books with the titles written in gold on the spine. Ha. I don’t know why I expected to find this in an old NHS building. It was more like a cold room with circle shaped wall stickers, a fresh green painted wall, and a CBT lady probably the same age as me. It was awkward.. I feel like I spent the whole time just rambling and saying what I felt I was meant to say. I felt too aware of the fact this was therapy. I left with homework which irked me as one of my main reasons for my anxiety is my inability to keep up with phone calls, paperwork… you know.. admin typed stuff.

I didn’t attend my second session. I had a huge emotional breakdown that morning and I just wanted to stay in. It was Amy’s respite day and all I wanted to do was cry and wallow in my own silly self pity. I got sent a new appointment the other day and now i am panicking as I haven’t done a shred of the homework and nor do I want to. I think maybe this isn’t the help I am after… but I am going to stick with it because heck, I’m not a quitter… and if it does somehow fix me in some way then job done.

I have already tried hard at meditating, and mindfulness techniques and whatever else you find when googling ways to cope with anxiety. For me it hasn’t had the tremendous impact I had hoped it was. You see I am quite observant, I don’t take any moments in life for granted… part of my problem is in fact the opposite… I over analyse absolutely everything, I find it hard to switch off and detach. I think a lot of people must suffer this problem but I do feel that sometimes I feel my emotions to the extreme and agonise on a thought which then darts off on a tangent and leaves me consumed by my own thought. It is quite literally infuriating.

I have always been an anxious person… it sort of runs in my family.. a long with depression too. I am never ever late, I am over polite, I worry about others not being happy and so on. Then I had a huge birth trauma resulting in a little girl who is severely neurologically impaired. I was suddenly thrust into this world of tube feeds, suctioning, standing frames, wheelchairs, appointments coming out of my ears and so on. I eventually had to give up work and become a full time carer. I will talk more about this some other time but I did just want to give some insight into why my anxiety status is so poignant right now.

Leaving work was a difficult but inevitable decision for me. I have to do what’s right for Amy and I am very honoured to be in a position to be able to do that. I am so lucky I get to be around her all the time. Parenting is hard.. this is next level… but the rewards are tenfold at least. I was brought up wanting to pay my way, make something of myself, earn money and work hard. So letting go of that when I was building a career felt like a big set back at first. I still cringe when people ask what I do for a living because I am so sure they translate “full time carer” as “full time mummy” as in “I don’t want to work”… and they probably don’t think that, but that’s how it feels. (That is not a dig at any full time mums by the way.. we all do what we do and I have huge respect for everyone that is doing what they have to do to raise their child etc).

So I had to totally reevaluate what I thought the purpose of life was. It’s enough to throw you into a bit of an existential crisis and that’s easily done when you have a brain like mine. In the end I decided that the reason for life is to help people and make people smile. It sounds so pathetic and cheesy I know.. and obviously there are people out there being surgeons, doctors, mechanics.. all very important things… and I don’t want to undermine that. But for me.. right now.. the purpose is give Amy every opportunity and make sure I make as many people happy as I can. I can’t be happy when others aren’t. Once Amy is settled at nursery, and we have resolved her feeding issues (another issue for another time!) and various other things… I hope to look for either volunteer work or a very small part time job. I am not even remotely materialistic but I do want to have a little money just to help pay towards running the car and bills… and of course coffee shop trips. I have a lot planned for the future. A lot of pressure on myself for a lot of things. I really want another child too but two miscarriages and now an issue with an ovary in addition to a birth trauma has me a little perturbed by the whole thing. I won’t let it stop me but for now it is a waiting game. Our housing situation is a waiting game too. We are told our little house isn’t adaptable for a wet room, hoist tracking etc so we will ┬áneed to sell our house and join a social housing waiting list… another difficult thing to digest.

The last two years has taught me more than I learned in my whole life thus far. 3 years at university was fantastic, but it has nothing on the life experience I have gained since having Amy. I love the special needs world. I have met some of the most amazing people ever and been inspired and in awe of so many people when I hear their stories. In some ways it has helped with my anxiety and I know that as time passes I will continue to become more resilient. Last year if someone asked me what was “wrong” with amy I would have been quite hurt by the wording.. whereas now.. on a slightly different perspective I see it as an opportunity to raise awareness and educate people. The more awareness we raise the more understanding and the more inclusion we get. The more inclusion we get the more likely we are to live in a world where a ramp into a building isn’t a luxury or a guilt trip but standard so EVERYONE has access to things. I hope that in my life I can help make life easier for people and for myself.

I could actually garble on and on incessantly about anxiety related issues all day but I shall leave this here for now.