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.
So this the birth of my daughter is the most dramatic, amazing, heartbreaking, most everything story I have to tell. I suppose everyone’s “birth story” or “becoming a parent” story is the biggest thing that ever happens to everyone. But I want to write down my daughter’s story before writing my posts about how incredibly proud she has made me recently. I have always been proud of her but this last few months have been absolutely astounding. Nothing can prepare you for parenthood, or birth, or anything like this. The world we were plunged into in 2014 truly defines me today, it also accounts for my perspective of the world, my view of the past, my anxiety of the present, and my aspirations and hopes for the future.
I am a mum. I am a “special needs” mum. I am the proudest person in the world. I am an advocate. I will fight EVERY negative view on disability, I will fight to raise awareness, I will fight for inclusion and equality. I will be that annoying person who harps on and on about accessibility to shops and the community in general. I want to see a world where my daughter and every wheelchair user gets the same rights and access to the world that we as “able bodied” people take for granted. Things have got so much better in the world, but we have a long way to go to fight stigma and assumptions. Anyway, I will dismount my pedestal now.. back to the story… ahem.
Me getting pregnant did come as a surprise. I was pretty well adjusted to nights out, playing with lego, playing video games, going to rock gigs etc… I liked my me time and I liked working full time and trying to build a career. My pregnancy was pretty typical… everything went absolutely fine for the whole pregnancy, I was the right weight, I didn’t smoke, I didn’t drink, I did it all by the book… after all.. I was creating a life! I did eat quite unhealthily but I made sure I got my 5 a day and if not that at least lots of vitamins…
Maternity leave began for me at about 36 weeks weeks. Amy was showing no sign of arrival and eventually I had to have a sweep. At 41 weeks and 3 days my water broke. By the way for me it was nothing like what happens in the movies… I wasn’t even sure that was what had happened until I phoned triage to check!! I knew at that moment I was to become a mum in the next 24 hours.
The next day my contractions began. They were indescribably painful. I can’t even begin to imagine the pain I was in. I remember being on all fours in my front room screaming my head off not knowing what to do. Phil rushed home from work to take me to the hospital.
When I got to the hospital they told me I was in the very early stages of labour and that it might be a benefit to me to go home for a while. I said no… I was in too much pain. In retrospect I am so glad I made this decision because if I had it’s pretty certain Amy would not be here with us today. A thought that fills me with all sorts of pain. She is the Ash to my Pikachu and so on.
I was given some pain killers and was put on gas and air. All it did for me was make me feel nauseous. The nurses/midwives came in and checked on me every few minutes to check her heart beat. All was fine. They were about to tell me I could get in the birth pool if I want. I didn’t really have a birth plan as I had been forewarned by so many that no matter what you plan… fate or your baby will have other plans. So I thought I would just go with the flow.
After a few hours of being in the hospital the nurse came to do a routine heartrate check.. her face dropped.. she left the room quickly. The senior midwife ran in and urged me to get on the bed and lay on my side. I was so panicked and in so much pain I was shouting that I couldn’t… but obviously I obliged.
Next thing I know I was rapidly being transported down hospital corridors in a bed surrounded by surgeons, doctors, midwives, nurses.. I don’t even know. I just remember screaming “please, make my baby safe”. I was in a deep panic and hyperventilating. The surgeon was explaining that I was about to have a category A c-section. I screamed for them to put me to sleep faster. I remember the mask going on and slowly feeling calmer and dozier. I was asleep.
When I awoke I could hear my name being repeated over and over. The morphine has distorted my reality and my first words were “I’m a robot now.” Something I look back on with both a combination of amusement and heartache.
When I was taken to my room I wasn’t aware of all the tubes attached to me, of my smaller stomach, or the fact my baby wasn’t there. In my drugged up state I felt like they were just preparing her to come and see me. Time didn’t pass slowly at all. My mum, dad, mum in law and Phil were there. I chatted all sorts of rubbish not understanding the severity of the situation whilst everyone around me was worried sick.
Eventually they brought Amy in. The situation hit me at last. “She’s very very poorly” said the midwife. “I’m so so sorry. This… just doesn’t happen”. Everyone was in a state of shock. I later learned that the entire staff involved in Amy’s birth endured a long debriefing as it was a distressing and traumatic time for all involved… after all, it was totally unexpected, totally unpreventable.
Amy was transported immediately to the city hospital for cooling therapy. She had been resusitated for 8 minutes following the csection and suffered a severe brain injury (one that would come to be know as “hypoxic ischemic encephalopathy – grade 3). The cooling therapy would keep her at 33 degrees to help prevent the brain damage spreading further. The next day I woke up and had a panic attack because she was in a different hospital to me. The adrenaline kicked in and I was shouting and rushing round packing my bags. I forgot I had just encountered major abdominal surgery.
An ambulance took us to the hospital. A doctor met with us. “Is there any hope?” I asked… still drugged up and totally unsure of what was happening. The doctor provided a grave expression and told us she didn’t expect Amy to make it through the night, and if she did she would be a “total vegetable” (A term I have come to detest and advocate against very strongly).
The next 5 days were spent in absolute agony both physically and mentally. With each day we saw progress with our little girl as she lay motionless attached to what seemed like hundreds of machines in the newborn intensive care unit. Compared to the other babies she seemed giant… she was the only baby in our section who wasn’t premature. It didn’t seem right that she was here. I remember breaking down so many times “why us?” “why her?” “will she ever come home?”
I remember the time a nurse told us she had done a wee. This was a huge win. Something you wouldn’t even think about as being an achievement.. this was huge. After a few days they started to wean her off the oxygen to see how she coped. After a few days she was off oxygen and breathing for herself. I well up just thinking about it. A nurse said to me “just think how good it will be when you finally take her home.” At the time this felt like a sick joke.. I had been led to believe that she was never coming home. I thought that eventually they would want to switch the ventilator off or that her heart would give in.
She was having constant seizures and we could see on a monitor every time she was having them. It was heartache like you could never imagine, I cannot quite convey just how incredibly hard those days were for us and how we all got through it amazes me. She fought, we fought, and so did the hospital staff.
She needed constant suction (she had no swallow reflex) and already had pnemonia from aspiration of meconium) and was fed via an ng tube in her nose. I was expressing breast milk every few hours to help give her the best chance. I continued to do this for 6 agonising weeks. I have a huge respect to anyone who manages to breastfeed… pumps hurt a lot more than oral breast feeding.. by the end of it I was in so much pain from mastitis and bleeding. 100% worth it. The csection scar hurt more and more as the painkillers wore off. I had a daily injection to prevent clots and wore anti DVT socks too. The scar was covered with a huge bandage. Just getting up to walk to the bathroom took around 30 minutes. At the time the pain was a sore reminder of what she was going through.
There was a day both Phil and I totally broke down. It was because I spent all morning trying to build myself up to say out loud “why doesn’t she move?”. Later that day a nurse said to me “There are good days and bad days. Today I think you had a bad day… but there is always tomorrow.” Those words will stick with me forever. The other thing that will stick with me forever is my respect for nurses and doctors who work tirelessly in highly stressful environments not only keeping people alive, but also helping encourage people who are experiencing a huge shock to the system. They don’t ever stop these nurses… they are filling charts, checking on patients, performing procedures, washing hands, getting meds… endless tasks. I bet when they get home at the end of the day they ache SO much. I hope they also ache with pride at how incredibly amazing they are and know what a difference they have made to the world that day. Seriously. The most inspiring time of my life. I have so many quotes from nurses, “there is always hope” being one of them. Thank you st marys from the bottom of my heart.
When the cooling cot was warmed up to normal temperature we saw her finger twitch for the first time. How we cried. Our little girl was with us. She could move! We filmed that little finger for such a long time. I am now crying just thinking about it. The first time we held her was on day 4… she was still fully ventilated and it took the nurse 45 minutes to get her safely out of the cot and into our arms.
After a few weeks she got transferred back to our local hospital to the neonatal ward. When she was about 4 weeks old she made her first sound – a cry. We were amazed. When we had met her pediatrician for the first time she asked me what concerns I had… one of my main ones was “how can she tell us if she is in pain?”… well, the cry eventually came and she showed her first signs of communication. We were amazed. I remember telling the doctor that ALL I wanted was for her to be happy and have an excellent quality of life… and this is still true as ever. Fortunately she IS happy and DOES have an excellent quality of life.
At 5 or 6 weeks old she was okay to come home. We were so happy and so scared!! We were armed with tube feeding supplies, medications, and a suction machine.
So that’s sort of it. The shortest version I could write. There is so so so much more to the story than this but I wanted to get this out there for people following this blog who don’t know me or my story. I will come back to bits of this story in future entries as so many things happened that shape how I think of the world today and how I operate in this entirely new world.
Amy is now over 2. She has severe quadriplegic cerebral palsy… she has mixed cp meaning her muscle tone fluctuates… sometimes she is very stiff, sometimes a bit floppy… she has constant dystonic (uncontrolled/involuntary) movements and literally does not stop moving unless sleeping. She is still 100% tube fed but via a gastrostomy button (on her tummy) and is fed 24 hours a day on a medicated formula via a feeding pump. I will no doubt discuss that surgery on here, and also the many feeding issues we still encounter to this day.
She has progressed so much. In spite of her restrictions her body forces on her… she is an incredibly bright little girl. Cheesy as it sounds she surprises us everyday with her tenacity and feistyness. Everyone who meets her adores her. She really is the best thing ever to happen to me.
I do still suffer PSTD from those dark days.. I do still get flashbacks. But i am getting better. I once collapsed at the sight of a surgeon a year or so ago because it gave me an unpleasant flashback. I am getting better at these things. Now I can focus on where we are now and whilst we do have a lot of challenges and hard times… we can smile.
I hope everyone can appreciate that this was a particularly difficult post for me to write. I know it wasn’t well worded or anything, I just typed and typed and told it exactly how it was. It has been hard reliving it in this amount of detail as usually when people enquire about Amy’s story I only tell a short version, kind of a default response I have made. This post made me relive every room, every conversation, every thought, just everything.
A huge thank you to my amazing boyfriend Phil, my parents, my mum in law, my grandma, all of my family and friends, st marys hospital, stepping hill hospital.. and the therapists who continue to believe in and work with amy and I today. Most importantly thank you Amy for pulling through and for continuing to make my life a happy one.
For anyone interested in keeping up to date with amy and her antics.. search “amy rose’s army” on facebook.
What’s more interesting than a blog post about complaining about tiredness? Probably just about anything else at all. But sadly that’s all I got right now!
Recently I have been absolutely fatigued. I know I have a lot of broken sleep but even so, no amount of naps, extra sleep, time alone, socialising, exercise, healthy eating, water drinking etc is making an ounce of difference. I don’t think I’m anemic right now. Who knows.
It has me wondering – is this just how achey I will always be? Is this a normal level of achey or am I just a whingebag? I feel so exhausted. My life is pretty non-stop and even when I get time to chill I find it hard to loosen up and unwind. I am so tense and on edge.
I am wondering if I have a hormone issue or if my blood disorder (ITP) is affecting how I feel. The last week has been characterised by my constant making of fresh homemade veg soup. I was hoping that kale, spinach, peas, cabbage, swede, carrots and whatever else would help me feel more energised.
I keep considering going to the doctors about it but I know they’ll just say it’s my lifestyle as a “special needs parent” or that my anxiety is making me this way. I would rather not have a blood test as it makes me faint, but I’m wondering what else to do.
I walked 4km today in the hot weather with Monty.. I know that isn’t far but when you’ve spent the morning bathing and dressing a very wriggly little girl and hauling wheelchairs and bags about etc you know that you’ve had an active day. This morning was so stressful. The little one woke up in a horrendous mood and wailed the entire way to nursery no matter what I did. In addition to this the traffic was bad, her feeding pump was alarming and beeping away (I couldn’t do anything about it so just had to endure it!). So I was sat on the playground floor trying to replace and prime the giving set and thinking how exhausted I was.
I am sorry to complain. But tiredness makes me this way. I know there is so much worse going on at the moment but knowing that doesn’t help. I am so worried about a friend of mine, and I am worried about an issue my parents had with their house and someone frauding them etc too. I used to get really bad anxiety about a burglary. I am not bothered by the theft of possessions but more the prospect of violence. I sometimes got so bad with it that I would purposely put tables right in front of the door so that if someone did get in they would instantly fall and I would have advanced warning. Ridiculous I know. Irrational I know. Sometimes people don’t get that about anxiety. They think you aren’t aware of how ridiculous you’re being. But no, we fully get it, thank you. We are sorry.
Sorry to be so negative, sometimes I do just need to let it all out and I am sure there are others that feel the same. It’s hard to enjoy myself and it’s hard to feel like your life is becoming about appeasing others.
I wonder is my mind in overdrive and it is having a knock effect on my body. I feel like I am overly worried about the future. I don’t know. I am not doing a good job of explaining myself today. I recently have been immersing myself in nature a lot more, and fresh food… in a desperate hope that it will “fix” me. It would seem that no amount of beautiful blossom trees and other people’s dogs are helping.
I will leave this here. I don’t really have a purpose for this post, I just felt like writing it.
“New notepad” syndrome is kicking in already… I am scared of tainting the blog with a rubbish and not well thought out post.
Right now I just feel like typing, I don’t have a topic in mind, I guess I just want to ramble. I am reflecting a lot tonight on what it is to be a person. We all have our own hobbies and interests, things that give our lives meaning, things that we wake up each day to enjoy. It saddens me that so many people in life aren’t in their dream profession and dedicated such a huge portion of their lives to something they don’t want to do just to pay the bills and enjoy that small portion of time full time working lets you spend. People say all these things like “dress for the job you want, not the job you have” or “do a job you enjoy doing and you will never work a day in your life.” All just charming sentiments but also completely not viable to pretty much the entire population barring the few that do actually get to do what they enjoy.
You see.. we need call centre staff, we need food restaurant servers, we need supermarket cashiers and so on. These roles and how enjoyable they all are probably vary significantly in terms of how good the management are, how good the perks are and so on, but generally, I don’t know many people who believe they were born to oversee the self checkout till. Now that isn’t at all me slating those jobs, in fact I have done 2 of those 3 jobs for 11 years of my life. The hours can be horrendous, the tasks involved can be monotonous and nauseating, the customers may at times give you grief… but at the end of the day you get paid and you have money in the bank, a roof over your head and a full belly. What more can you ask for?
Well, to be honest I expect a lot more. My life has been a bit of a rollercoaster ride – in particular the last few years. When I started my “call centre” job in 2010 I knew this wasn’t my ideal job by a longshot. As a child I have dreamed of becoming an artist or an archeologist. Turns out, I’m a bit of a crap drawer and there aren’t many (if any) ancient fossils in my back garden. But I made the job work for me… the roles were often almost intolerable… I struggled staying in my seat and wanted to just do something that held more meaning or interest to me… but I plodded on like everyone else there. It was a great company to work for, and the people I worked with were truly amazing people. So I had just got used to this job… I was trying to get more interesting roles or a higher paid role… I wanted one or the other. But then when Amy was born with a severe brain injury all of this changed.
Being a carer is a privilege.. but a very (and I mean very) low paid job, it doesn’t offer a great pension, it doesn’t offer you a share incentive plan, the hours are 24/7.. 365 days a year (day and night), you don’t get a designated lunch hour or journey to work with your ipod music on. We do what we have to do. We deal with the cards we are dealt. I am honoured to get to do what I do but it is hard, and often lonely. Emotionally it can be very draining… the appointments, the admin, the fact I am heavily invested with and pretty much in love with my care-ee. It is safe to say that I have lost myself a bit. I still love pokemon, and rock music, and all these things… But I have so little time for them now, and when I do I prefer to sleep or do something easy like browse facebook, or sleep.
I think about that question people often ask: “where do you see yourself in 5 years?” and I think to myself.. wow.. imagine the cez of 5 years ago… how would she respond if she knew life was going to be how it is now? I also wonder where cez of present day will be in 5 years. There are things I really want from life still, I really want another child. I had two miscarriages last year, and amy’s birth was far from straight forward… so now pregnancy and birth absolutely terrifies me. I do hold some bitterness inside that some people seem able to pop numerous children out no problem and I’m here an absolute quivering wreck at the prospect of it all, totally shell shocked. I also want a job… one where I really help people. I never knew that I would have made a good nurse… I didn’t know I wasn’t squeamish… I can pass ng tubes and all sorts of things now. Because I had to.
I wish school had made science more interesting for me. I got two Ds for science in high school. They did not at all inspire me to learn and these days I am absolutely fascinated by all things science. Science is amazing.
I mentioned in a previous post about how I cringe when people ask “what I do”. It is a shame that so many people will define you as a person by what you do. I used to work in a supermarket… it is a damned hard job and not to be scoffed at… I have so much respect for shop workers. And yet it isn’t a well respected role. I was never proud to say I did that job even though it was a good company and so on. Wouldn’t it be cool if we defined people by their morals or what a nice person they were. People who are kind and thoughtful hold so much more value… though I guess having a kind heart doesn’t make you an excellent brain surgeon. It’s a tricky one. Instead of what do you do, or how are you… ask something that gives you more insight into a person. What do you like to do with your free time? What’s your favourite dinosaur? If you could be any pokemon which would you be? What’s your favourite flower?
Whilst I am not greedy or desperate to be rich… I always wanted to never struggle for money. I always thought if you worked hard then things would be easy. But truth be told I am currently working at absolute max capacity right now and barely have a penny to my name. If it wasn’t for Phil working full time who knows where we would be. Because a hard working carer doesn’t get a pay rise, or recognition for a job well done. It is a rewarding job when I see a smile on my daughter’s face.. but on the hard days? It really is a battle. I miss Phil. He works such long hours and when he is here I’m so tired I sometimes can’t even speak. I think maybe what we need is a nice holiday… I’m fine with it being in this country.. but just away from the stresses and strains of daily life.. away from the home, away from distraction and obligation. I want time to properly reconnect, and laugh again.
I hope none of you read this post as me having any regret regarding career history and the future etc… I am merely expressing how I feel. With so many things I never really feel one way… my opinions can change from day to day and I guess I am just trying to make sense of the events that have happened in my life. I am so lucky to have had the jobs I have had and I have learned so much from all of them. I have definitely learned that sitting in the background working hard doesn’t get you recognition and that you need the confidence to assert how good you are and fight for what you deserve. Not a truth I wanted to learn given my preference of being humble and all. I get more resilient everyday. I hope you do too.
I am going to go now as I really am just typing my thoughts as I think them and it probably doesn’t make for much of an interesting read. Especially when it’s mainly me wondering about the future and complaining a lot. One thing you will learn about me… I complain a lot, but I do this when elated or depressed, it’s kind of one of my things. In fact it is a hobby I have indulged in more than ever recently! Maybe I have not lost myself after all.
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.
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 need 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.