To the Lady who Heckled us Needing the Wheelchair Bay

This won’t be a long post but it is something that has been popping into my head constantly since it happened yesterday

So as a family we had enjoyed a day out at a wonderful seaside resort.. celebrating the 80th birthday of my amazing grandma. Going out with a child can be hard work.. going out with one who has a disability can be much much harder. The amount of planning and packing involved is considerable. I knew we were making the trip over a week ago and I had been worrying about it pretty much constantly since the plans were made.

I realise this might sound irrational but there is so much to think about. How will we get there? Should we drive? Should we get the train? Would she be able to handle the train? Does it have good wheelchair access on the trains and at the stations? Will she be okay with a two hour journey or will this cause a meltdown? And so on.

In the end we decided it would be best for all if we got the train. The train there was fine. It was the train back that is still causing me anger and grief. We’ve had numerous train journeys in the last year with varying success. We’ve had times where lifts weren’t working at stations and we’ve carried the wheelchair up many flights of steps, we’ve had journeys where people look disapprovingly at our daughter’s need for an ipad. I am somewhere in between shouting at these people, explaining why it is necessary and that we aren’t just lazy, and saying nothing. These days I opt for the latter and silently bubble with rage within.

We were getting the train home after an actually very successful and happy day when the train conductor began to urge everyone further down the platform. He was looking right at us wondering why we hadn’t budged. We shouted over “We need this wheelchair carriage”

To which a lady in the crowd retorts “don’t we all?”

I can only assume she thought our daughter’s wheelchair was a pram and not a wheelchair. Well lady.. you would be hard put to try and get one of these bad boys in mothercare! £2400 worth of biomechanically engineered, posturally supportive, heavy bit of kit provided by the local wheelchair services. My daughter has severe quadriplegic cerebral palsy… in fact if she had looked closer she would have seen that we actually have a feeding pump and a big tube routed alongside the wheelchair. We also have several bags for we must take numerous outfit changes, many electronic toys, spare feeding buttons, lots of medications and all sorts of things that you would probably not even consider when planning the average day out.

The lady in question had two perfectly able bodied children. I’m not saying she hasn’t had a challenging day. But what I am saying is why can’t people think before they speak?

She probably doesn’t even remember shouting that out to us but me being the emotional anxious wreck that I am… I am dwelling on it a lot. I didn’t let it spoil my day but it did make my blood boil.

Luckily thanks to the wonders of the internet and social networking.. invisible disabilities and much more are getting the awareness they deserve. For all she knew it could be myself with a chronic illness. My mum actually suffers various chronic illnesses and some days they are debilitating for her.. other days she copes like she did this day. To look at her you would think her to be just like everyone else but the truth is she can be in a lot of pain. She will smile through it and put on a brave face… but you haven’t seen behind closed doors. Just how you haven’t with our life.

We have seen our child go to surgery, we have seen her have seizures, we have had to learn to tube feed, we attend weekly physio, we have a while set of processes in place to ensure she doesn’t get curvature of the spine (scoliosis) or hip displacement which could result in agonising surgery. She most likely does not have that for her child. If our situation were not a challenging one we would not have been awarded a blue badge so that we can park so we have space to assemble the wheelchair. To that lady – have you ever had to do any of these things?

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Our daughter does not need sympathy… she has an amazing quality of life, she is a happy and bright girl. Her physical limitations do not define her as a person but we do ask that people respect that some people do need a little extra space or access. Accessibility is an unnecessary hindrance as is people’s bad attitudes. She does not judge you, so don’t you judge us.

The man at the station was so kind and understanding. He helped us onto the carriage, he offered us the wheelchair ramp, he helped a man using a wheelchair onto the train. He was a credit to the company and the antithesis of this vile woman whose thoughtless remark cost me my good mood. The wheelchair carriage enabled us to have the space needed to ensure our child was safe and happy. We aren’t just lazy parents. We don’t take advantage or lie. We are playing the cards we were dealt and accessing the community just how EVERY person should. Show some respect.

Think people. Think!

I should also mention that on this same day we encountered many individuals who were enamored with our little girl and were so lovely and kind to us. Unfortunately though, those people don’t always get a post dedicated to them. I will write a post some time about the lovely people I meet. Also – This blog is intended to be about any topic… I know i have done a few posts about my daughter now, but I just write about what I feel like at that moment.

(The picture I included is taken from this particular day out where we took my grandma to see “illuminasia”… our daughter absolutely loved it too)

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The Day my Life Changed Forever

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.

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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.

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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.

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When healthy eating, exercise, socialising and nature don’t work

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.

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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.

Why Doesn’t my Internal Monologue have an off switch?

If I were a fictional character I always thought I would be Miss Havisham (from Great Expectations) or Bertha Mason (Jane Eyre). Today I feel more like Bertha and wish I were more like Miss Havisham. For those who don’t know who either of those characters are… one is “insane” and one is a recluse living in a mansion with a decaying wedding cake.

As I type this right now I am holding back the tears. For some reason my sertraline makes me quite numb to a lot of feelings and it tends to mean that if I cry I really am having a hard time of it. Today I think I have felt every possible emotion and I am absolutely exhausted. I need to leave the house in forty-two minutes to pick Amy up from respite (Note how I know to the exact minute what time I need to leave. I do this all day everyday, I meticulously plan out my day and really wind myself up in the process)

I was feeling sad this afternoon but what has made me worse was the man who rapped on my door so loud that I dropped a load of shopping on the floor in shock. I know that I startle easily but this would have startled anyone, he was so rude. He was angry because I had parked on his (not legally enforced) white line. My reason for parking there? Well, there was a massive truck parked in the middle of our road as they are carrying out some work on the water pipes in the road. I had no choice but to park there. I had checked out of the window several times to see if I could my car but couldn’t. What makes it worse is that the guy could easily have got in his spot as I had ensured I had left sufficient space. So right now I hate everything and everyone.

This morning I liked everyone and wished them well. When people have problems I feel like I have taken the problem on as my own and I worry fiercely about everyone I care about. Sometimes when I feel really low I remind myself that we only have one life and to live it as such. But then that scares me and I panic, I over sentimentalise, I fear our mortality and I worry about potential grief that will inevitably happen at some stage. It’s awful. I am sure others feel like this but I doubt they feel it as intensely as I do.

I was meant to attend CBT today for my second session. But I felt so overwhelmed I had to cancel. I told them I have too many commitments and can’t fit it in right now. The truth is I don’t want to go. It isn’t that I don’t want to get better… It’s more that I don’t want to go to the hospital when I am there twice tomorrow for Amy’s first two appointments of the day. It’s also because they set homework and I hadn’t done it and felt guilty. I went to the doctors instead. My eczema has resulted in a secondary infection so I have a new steroid cream and antibiotics. I can’t wait for my hands to stop bleeding and weeping. There is a lot to be said for the psychosocial effects of eczema and how it can impact every aspect of your life.

For some reason the words aren’t coming to me right now. My chest feels tight but not tight enough for a panic attack. I have just been to the supermarket for my prescription and my social anxiety was out in full force. I think on the outside I probably seem quite confident and chatty but the reality is that my internal monologue is shouting in my head louder than my voice when I speak and I feel like I’m battling the two. For example I saw someone I used to know and she had a baby with her. She was next to me in the queue. I said hi, she said hi back. I couldn’t extend it further than that because my monologue was saying “she has a baby. You don’t. You would have had a 4 month old baby were it not for that horrendous miscarriage you had last year. You probably won’t get to have another child and if you do you’ll panic yourself silly the whole time because you’re pathetic.” At that point as I was self loathing I looked down and saw how fat my tummy looks today, I then exchanged an inadvertent eye contact with the girl I used to know. She looked down as if also looking at my tummy. I don’t know if I was just being paranoid but then the monologue pipes up again “she’s looking at your fat belly wondering if you’re pregnant. Well you’re not. You’re just fat. Don’t even think about eating any of that chocolate trifle you bought for Phil. You’re grotesque and lazy.” and so on it went.

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I left the shop feeling shaky and weak. My own mind made me feel that way. My mind is bullying me. How ridiculous is that? How irrational is that? What on earth is going on.

As I walked to my car a man was carrying far too much shopping. He dropped a chicken drumstick on the floor. I instantly felt gutted for him. I knew his internal monologue was saying “You silly fool. Why didn’t you just shell out 5p for a carrier bag”. I offered to help him to his van as he struggled on. He politely declined. A few seconds later more of his shopping came crashing down onto the floor. A BLT, some fabric softener and some pistachio nuts. “Come on! I said” amused at his manly bravado that he didn’t need help. He’s probably a bit like me; stubborn and independent – but also often wrong. I helped him to his van. I walked back to my car pleased to have been of assistance… I often crave that feeling of being indispensable, of being useful, of being a recognised contributor. I frequently just feel like a free loader or a sponge.

My lonely days are often filled with these little encounters… just little conversational exchanges with strangers. Between the clumsy builder and the angry man making me move my car to the petrol station guy who laughed with me about old video games and coffee… I can see clearly that my emotions are too strong, in a bad way. I just feel out of control, and I can’t relax.

I did get to see my parents today. Then are going away for a few days so it was good to catch up with them first. I think they know more than anyone what it’s like to be me, I think they understand my “quirks” and accept it well. So there has been some nice parts to the day. It was so strange to be so suddenly overcome with deep sadness out of nowhere earlier. It was a bit like when it’s a sunny cloudless day then suddenly out of nowhere the sky darkens and the clouds cry heavy tears of rain. It was like that. It was like the scene in Amelie when she flushes with grief into a puddle on the floor. I relate to that strongly every time I watch that film. Her expectations just flush into a puddle on the floor.

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I so much want to be someone who can sit in their garden and read a book without a care in the world. All of the things I want from life seem so attainable and yet somehow aren’t. I can’t quite put it into words today.

Anyway. Crazy lady in the attic must sign out for now. I need to go and do various tidying and chores before I pick amy up. If I don’t pass out before then.

 

I will Never be an Archaeologist

“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.

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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.

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  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.

Itching to Complain about Eczema

According to the National Eczema Society 1 in 5 children suffer from eczema, and 1 in 12 adults are afflicted with it. It is quite literally a pain and I have battled with it all of my life.

It seems that social media is enlightening a lot of people on chronic illnesses and making us aware of the strife others face. For me eczema affects my daily life and has done every day of my life. These days it is mainly my hands that are affected.

Don’t get me wrong, I know there are far worse illnesses and I know that my daughter has contended with much more than this. But I have never really put into words my journey with eczema and not a day passes where I don’t wish I didn’t have this problem. I am also aware that there are people who suffer with eczema far worse than myself and they have my deepest empathy. I don’t write this post as a whinge, “feel sorry for me” or a “oh woe is me” entry, I just felt like writing about it as today it has been my main focus as I try feverishly to recover from my latest flare up. (Amy is at respite so I have had my hands free-er than usual)

Recently I am afflicted with a flare up that I haven’t been able to tame. I can attribute a lot of the blame to my care duties with Amy – She is tube fed and this means drawing up a lot of medications, washing my hands a lot, cleaning a lot of syringes. In addition to this I do a lot more laundry than most people probably do, and also bath her a lot as well – all related to her gastro/feeding issues. The knock on effect is that I am constantly dealing with chemicals, wetness and all sorts. I have a diprobase pump in most rooms and have switched to eczema friendly hand wash (dermol 500)… in addition to this I have special shower gels, diprobase, cetraben, ultrabase, and epaderm. My doctor has stopped my steroid creams because I have been using them for too long and it is actually exacerbating my symptoms.

My very kind friend Lucy recently posted me some zinc based bandages for helping atopic eczema. I think the idea is that you wrap them on, then cover with normal bandages and leave it for 3 days. It seems to work, and the bandages are quite fun to put on. You get the added bonus of looking like your hand has been mummified, and if you’re as fascinated by ancient Egypt as I am, then this is a true Brucey bonus.

Unfortunately though due to the location of my eczema it is very difficult to keep the bandages on for this amount of time – my lifestyle is not suited to relaxed hands! I have been keeping them on overnight and trying hard not to itch, I also have cotton gloves for helping epaderm soak in properly overnight. It’s still not gone though. My hands are so so dry. The temptatinon to itch is overwhelming.

When I visited my GP last week she was visibly shocked by the extent of the damage. My hands and fingers were weeping, bleeding and so blistered. I wanted to cry. If you’re like me, and living in the UK with this – if you don’t have a pre payment prescription I suggest you set one up! I got prescribed about 5 different creams last time and if I wasn’t paying £10.50 per month for my precriptions it would have cost me about £40!

I sometimes think some of my anxiety issues can be blamed on my eczema. If someone goes to shake my hand I can feel my heart pounding through my chest and I’m thinking “please don’t notice my gross dry hands, please don’t” (Also I don’t like touching people, and I freak out about hand germs.)

I miss using heavily scented bath products like radox and stuff from lush, I wish I could use my hands with confidence, I wish I didn’t have to spray my perfume on my clothes. I am dreading summer and the need to apply sun cream.. this is usually guaranteed flare up.. I think I would rather burn from the sun than from eczema.

In my desperation I have been reading up obsessively on causes of eczema, and treatments. The fact that it is on my hands is obviously pointing towards it being from things I have to do with my hands. So I wear washing up gloves when cleaning, spontex gloves if dying hair and sometimes preparing food.. I read that some people bathe in oats, or they try to rule out allergies by cutting out dairy, gluten etc. I don’t have the will power or motivation to cut out dairy or gluten, as for oats.. i keep forgetting to buy them. I have been bathing in oilatum recently and i love the smell.. I just miss the foam because 1) It is pretty and 2) It hides my fat whilst I’m bathing and I can pretend I’m a mermaid or supermodel, and let’s not rule out bubble-bodied human hybrid centaur-like thing.

I am always envious of people who don’t have to deal with this… not that I would wish this on anyone. I hope when I complain about it people can understand that this is a lifelong, ongoing, chronic illness. It isn’t just a bit of dry skin… it is burning, agonising, bleeding horror! So, I will go now, as in less than an hour I need to pick Amy up and I am wasting valuable hand moisturising time typing… it was either that, or a greasy keyboard.