Latest contract piece for firefly
You can laugh, or you can cry. Sometimes I want to do both. Simultaneously.
No I am not having some sort of mental breakdown. Or am I? I don’t even know anymore.
Today I finally mustered up the courage and set time aside to chase up my self help referral. I have tried CBT… to no avail… it wasn’t for me. Clearly just medication and breathing exercises alone aren’t enough for me. I can’t switch off, ever. I can’t get to sleep or sleep well. I can’t stop the constant thoughts. It is an endless stream of consciousness… there is no pause or stop, only play or fast forward. It is exhausting.
Sometimes I think I am just being a bit dramatic and that my daily stresses and strains are equal to everyone elses. But then mornings like this morning are a reminder that this is far from the truth. Continuously broken appointments, frequent heavy lifting and manoeuvring, beeping problematic machines, non stop phone calls throwing problems at me. Logistics, plans, everything. Too much.
I don’t want to go into details about it all at risk of 1) making myself get all worked up again or 2) it being read by the wrong people and me getting in trouble.
We’ve had a few things arranged recently whereby people haven’t shown up. Or what was promised was not delivered and has left us in the lurch.
Imagine my consternation up on chasing my referral to have to leave a voicemail and receive no return call. The thoughts begin “why do I bother? No one cares. You’re wasting your time. why can’t you just cope. Why are you pathetic, how do you even have friends? Why can’t you just calm down and breathe like everyone else?” Ignore, ignore. The thoughts prevail. The seep into your everyday activities, distracting you from your task in hand.
Walk it off. Lower your adrenaline. Have a glass of water. Just breathe. Just breathe. Don’t keep checking the time. You have plenty of time. Enjoy this moment. Boom, sudden thought about losing a loved one. Why? Why brain? I am already stressed, please don’t do this. I become consumed at the thought… text that person, check on them, let them know how much you mean to them. Text sent. And so on.
My brain is so tired today.
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.
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.
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.
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.
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.