Succulent, see

Hi all! I haven’t disappeared. I realise that my posts here are few and far between. I have been doing a few blog commissions for Firefly recently hence my absence here. In addition to that things have been a bit up and down with Amy. We had a hospital visit last week.. nothing serious but she was beyond irritable and had to be checked over etc.

This weekend we are going away. We are going to haven to stay in an adapted caravan. My mum and dad were meant to be coming too but we had a bit of a mishap on venue and they ended up at a different haven location on a different weekend (haha!). Funny now, but wasn’t back then.

I am actually typing this purely in a mission to waste time. We have a guy round doing cctv in the drains. We had this blockage incident at the weekend which meant if any of us needed the toilet we had to take it in turns to go to the supermarket (another “funny now, wasn’t back then). Waiting for him to leave so I can pick up amy’s prescription and pick up some stuff from the shops then hopefully walk the dog.

I woke up with a stinking cold today. So annoying isn’t it. There is never a convenient time to get one but today is especially not good. I seem totally incapable of resting. I managed earlier for literally 5 minutes before I went and sorted Amy’s clothes out. Managed to clear out loads of stuff she has outgrown and also found a friend happy to take them on for her daughter. Feels like a huge win but I really do have a headache. Anxiety is so annoying for this. I can sit down at night when phil is there and I’m too physically exhausted to do anything else.. but other than that I’m whirling around like a fool trying to get things done.#

I haven’t really got any other news… if you can call any of what I said up there “news”. We did complete on the sale of the house which was good… we have been paying both mortgage and rent for the last 6 or so months and it was starting to become a financial struggle. So this has been a huge relief for us and now we can start to finish Amy’s bedroom. She needs a wardrobe and a few other bits as storage is fast becoming an issue. We will be having hoist tracking fitted soon so will be good to have her room ready for that so we can figure out the logistics.

We are that awkward stage now where really she is getting hard to carry… but we can do transfers without a hoist. It’s almost like we are in a transition period. I am struggling coming to terms with the idea of hoisting. I know that in years to come I will look back on now and wonder why I was so upset about it… but it is what it is and whilst I count my blessings everyday I think it is only normal to grieve and wallow. I just try not to wallow for too long as it isn’t conducive to a good outcome.

We’ve had a few pretty traumatic school drop offs and outings lately.  I’m not sure what the source of bother is but she is getting very distressed and pretty much undistractable at times and it has tested my patience harder than ever before. My friend took me out for breakfast on wednesday. I arrived at school literally shaking and holding back the tears. Amy had wailed the entire way in and because of traffic it took almost an hour and a half of creeping crawling traffic to get her in. She was bright red in the face, covered in tears, inconsolable. I hear from nursery that her mood and indeed day did improve so that’s good.

This time next year she will qualify for school transport. I am nervous for this and at first was determined that I continue to bring her in but have my own petrol allowance… but after this last week or so I am in no doubt about what needs to be done. Unless of course she is even more distressed with them. My worry is that they may have even less patience than me and I can’t stand the thought of someone being angry towards her. So we will see. Maybe having other kids in transit or her ipad will make it a better journey.

Today I finally got round to planting my succulent and cactus seeds. I have been annoying Phil for ages with my quest for the perfect succulent. I actually did buy some really cute nice ones and have them displayed on the front room window sill but I also have planted some seeds as well. I did it with the idea that really I should have hobbies other than just boring things like chores… and nature and plants are always a good idea. I am hoping to play more games, listen to more interesting podcasts, walk more and read more too.. there often aren’t enough hours in the day and sometimes when there are I am too tired. I don’t want on my death bed to be wondering why I spent so much time doing the dishes… I should be recalling all of the lovely trips I had and hobbies I indulged in and so on. I wish I didn’t spend so much time imagining myself on a stereotypical deathbed listing my many regrets in life… hopefully that won’t happen.

We all say we won’t turn into our parents but I remember wondering why they liked feeding ducks so much, feeding birds in the garden, and growing plants.. and here I am now loving all of those exact things. I’m not a party animal like them though.

I had a lovely walk with my dad yesterday too. I hadn’t seen my mum and dad properly in over a week and was becoming a bit miserable. So when I received a text yesterday inviting me out on a dog walk and then to their house for food I was actually delighted. It transformed a lonely (but needed) respite day into a day of fun and laughter.

I will leave this here so I can continue to bumble awkwardly around my own house trying to work out if this guy wants a brew (he declined when I asked..) and if he is planning to leave any time soon.

 

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Finding my footing, navigating my way a long a tricky path. The mud sliding beneath my feet as I feel deep regret for once again making the incorrect choice of footwear for this venture. Using the chunky roots of trees to provide me traction to prevent me from falling to my knees I make my way a long. I navigate myself around the puddles as best I can, inevitably immersing my shoes in a thick cake-ish brown. I want to look up at the trees but for fear of losing my ties to the ground I make do with the occasional glance.

I glance up at the trees. “Nature, you crazy” I think to myself as I consider reaching for my camera at almost every tree I encounter. I have always been fascinated by the less conventional looking trees; the ones that entwine their branches round the trunk of another tree; the ones whose branches twist and contort ever reaching up and up towards the sky. Each branch competing to feel bask under the warm blanket of light from the sun.

I look down again. I got clumsy. Walking uphill and thinking to myself how much a steep incline is symbolic of lifes struggles. Making my way to the top I can feel myself gasping for air. Not through lack of fitness, but because sometimes I forget to breathe properly. I take in as much air as I can, I can feel my lungs expand. Instead of considering breathing exercises and how this should be a calming ritual I reflect on my own fragile mortality, I think of how grateful I am for functioning lungs; I berate myself for not even remembering to breathe properly. I acknowledge that berating myself for not breathing properly is not conducive to good mental health and I look for distraction.

I look to the river. I will always gravitate to places with water. I love how both tranquillity and chaos can exist side by side so cohesively. The river is flowing fast today, it must have rained last night. The effects of yesterdays weather on the river are controlling its function today. The fast flow now reminds me of a fast beating heart, the panic, remember to breathe. Just breathe.

My dog runs onto the sand at the embankment of the river. I smile to myself. He is so silly and happy in life. I wish I could be more like him. For a moment I am reminded that it is these little moments in life that make it happy and I am so grateful for such a companion in my life. If it weren’t for him I wouldn’t be on this walk, I would be elsewhere entirely; probably indulging in one of many bad coping mechanisms… over eating, too much caffeine, and over thinking. It is good to not be afforded the luxury of over thinking as today I have found it all too overwhelming.

A small stone wall that has mainly fallen away reminds you of some kind of ancient relic of the past. Perhaps placed in Victorian times or even older. This causes me to feel nostalgia for university days, losing myself in a book. Something I no longer have the concentration for. Another moment of berating for not enriching my life how I used to. For turning to the convenience of television, favouring the art of doing nothing, of not having to build the pictures in my head for myself. An old church, a rusty gate, a well. Tremendous.

They say in life that nothing good comes easy. But lately I feel that nothing at all ever comes easy. That almost every interaction on the phone with a stranger will have a negative outcome. That every letter through the door is another “to do” to add to the list. That every requirement of medication will involve copious amounts of outbound calls to people who are being paid to talk to you but not paid to care. That every interaction I have will reflect back at me all of my pitfalls. I will withdraw into myself and excuse myself from social functions. Or I will go the opposite way and require someone. Misery loves company. But on those weeks every reaching out to a friend comes back as a reason they cannot see you. You have no choice but to feel it a personal attack, that you aren’t good to be around. You agree with this, you don’t even want to be around yourself.

Your thoughts enter a downward spiral and you think about how unfair life can be. Why am I like this? Why was I given the challenges I have? The glowing yellow in a field beyond the trees catches my eye. I am distracted again. I don’t know much at all about flowers, they always make me think of my mum and grandma who both share a passion for them. I note that these flowers are most likely weeds and yet they are so perfect. I get my camera out and take some pictures; the quality doesn’t do justice to the vivid colours, even with a filter.

Every able bodied child passing by on a scooter or eating a lolly feels like a slap to the face. You don’t want to feel like this. You celebrate what you have. But you are more than welcome to note the heartache that you so often feel too. This wasn’t what we asked for. This wasn’t what she deserved.

Last time I lost my footing I sprained my ankle. This injury resulted in a further few sprains. Always try to look where you are going. They don’t look too far into the future on this journey, but it is hard not to. I feel like a burden, a martyr, a bit of a fool. I fear that those who love me will realise my lack of worth and deem me too high maintenance to handle. I know that this won’t happen, and yet I still hold that fear and let it keep me awake at night.

I look up at the trees again. I start to see signs of autumn – the big season of changes. Where the leaves flourish and morph into glorious shades of golds, oranges and reds. It is only August, but you can’t wait to immerse yourself in this rich display of nature and try to pretend that for just that little moment, this is all that matters.

I am home now. It is night time. I get into bed for an early night. There have been too many nights of disrupted sleep. Surely this is my night. Immediately the effects of restless legs take place. The irresistible urge to stretch possesses me. I toss and turn, getting more and more frustrated with myself. Physically and mentally exhausted I continue long into the night to try and muster a few hours good quality sleep.

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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.

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It Occurred to me Recently

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.