The Glass Pelvis (by sarah)

Through my tears and the creation of a dark transient poem I have hit upon the concept of writing a self-help/how to survive book on chronic pain and truma during and pregnancy, child birth and the after math. It would be called the Glass Pelvis. Arrogant? Probably - something that's needed definatly.

I slipped over yesterday which would have been pain full for anyone as pregnant as me but with the seperated pelvis - I could not speak for the tears of pain. This have been quiet bad pain wise as I have had a mini pain flare up with my left arm anyway which sucks as it has ment no proper writing and no guitar practice for about a week now.

Chronic pain has many books on it - but seperated pelvises are relatively new thing in medicine. A great increase has been seen in the last ten years - I have my theories on this involving modern live style and gyms not getting to the right areas that women need strengthened and modern diet with it's additives and loss of various things like sea food.

You see I am on the crutches and it is an issue but I am not anywhere near the state I was in with Jeany and looking at how things like gestational diebetes come about I feel that management of such conditions as the 'broken pelvis' are important. Especially as it can lead to complications and more truma for both mother and child.

Now there was nothing avalible for me when I had Jean and everybody seemed quiet confused over the whole thing. I have been told this time round that even the physios are now giving up with the condition.

So I want to share what I went through, to aliviate some of the isolation that mothers in this sort of position suffer. Of course I also had lots of other things from the miscarriage stuff, to the blood clots to the pre-clampsia and pregnancy induced hyper tension. Even being in the hospital when the bombs went off in London. I think with research and checking with medical people I could produce a good guide to mother who don't have it easy.

Separeted Pelvis is termed symphysis pubis dysfunction or SPD and having seen the result of being not allowed out of bed with Jean's pregnancy (due to blood clots and what not!) I have been desperate to keep my mobility up what ever the pain levels (once I'd checked that there was no danger of baby popping out!). I have interesting comparisions but then this pregnancy has been managed much better - the only issue is that a) the pelvic pain never completely went away from Jeany and b) due to issues I've had I've had a body pumped full of pregnancy hormones on some level for well over a year now meaning that the pelvis has been far more mobile than expected.

The truth is that I didn't now that I would end up on crutches again before the baby was born - becuase I was bed and wheel chair for the last half of Jean's pregnancy the pelvic issues were only found after the birth and was told that it was from the childbirth because of an old back injury and a large baby but they have said this is wrong and it is the hormone levels and stuff. This was a bit of a blow for us but hey I can still walk (with crutches) in the week when my baby is due!

I think the main issue with producing such a book will be that I don't know what a 'normal' pregnancy and labour is like. And even the c-section is going to be interesting on the recovery side of things due to walking with crutches etc...

My mood is fragile at the moment due to the pain I'm in but what is actually concerning me is that after Jean was born I was bunged in a side room at Harold Wood with no one to talk too and depending on shifts was not even given water to drink! (resulting in dehydration and my milk drying up and me then having to suppliment and work hard at getting the milk back again!). People have said it's not like that here but the fear of hospitals is still nagging at me - I am concerned as to what is going to happen to my mood when I get the post birth hormone crash and a hospital stay. I'm hoping that I will just know how to cope with it better this time.

So in some ways I think this is going to be a self help project as well.

Headless, Heedless, Reckless and Restless (by sarah)

I feel a burning restless desire to just do something but have no energy and the thought of choosing anything is hard at the moment. I feel like I am wondering aimlessly - like my head has been cut off. I am just me but who is me and what do I do now? The last few years have just been absorbed with caring and doing and before that just surviving - it has been a rough run through grief and miscarriages and hitting my own mortality more than once and then both parents gone as brackets around a global pandemic. And I am still here looking at my beautiful family knowing it is only a fragment and that they each of them is hurting and fighting their own battles and a chunk of that - what ever they say is my fault weather through my fault be it genetics or circumstance.

My heart isn't just broken, it is pulversized - it is raw meat - it is a bloody pulp that I am not sure can be revived - I want my babies and I want my parents - but I have Al and the kids except I feel I am loosing them - this is only right for the kids they are growing up and I can not cling to them because the ones in-between are missing. I feel that I sacrificed my last bastion of motherhood to look after my Mum and yes I resent that and I know people think I am selfish for even considering more babies. I am just a tattered remnant now - I look at all the things I am supposed to enjoy and I just think "but do I really?" I am doing better with this but still not sure it is not obligation.

Alaric says they just want me to be happy but - what is happiness - all I ever wanted was to feel safe and secure - to not be in pain. Apparently that is not happiness and I have struggled with pain my whole life and I'm no longer sure that I will feel alive without it. What would that be like? No pain? I am sure there must have been times of no pain but my memories are riddled with it. Sitting on the wall waiting for a bus at 17 my back burning, standing doing my shifts at the Union at 21 my pelvis and hip aching, 11 year old me in a Guide game crying because to sit like that made my knees feel like they were being crushed. And I didn't know others did not also feel this. And just to ease it often robs me of thinking capacity as the pain killers space you out but then so does lack of proper sleep.

And I think of my mum and the pain she endured and I get so angry - incandescent and this rage... it scares Al - it scares them and they need me and I can't be there for them and I know this has broken them. There has been so much lose for both of us - during all this Al also lost friends and family members and had to make decisions they never expected to have to make. They said they are sick of me almost dying and they are sick of death - it is eating our lives this bereavement merry go round we have been living. 5 years now - 5 yrs of lose and medical dramas and it sticks in our throats and it is scouring our bones and we are tired. The year before the pandemic Al ran out of leave days to take for funerals - last year they had to have months of compassionate leave to help me look after my mother and it was harrowing - the thing we all found the worst was when she was calling for her mother and reaching her arms up to us like a toddler but it came and went and the week before they discharged her I was hopeful even when they took her back in after the disaster of a discharge - I still thought... it doesn't really matter... things either don't matter or the smallest of things seems so frantically important.

The sunsets have been amazing lately - because of storms and dust and climate change - things that were once rare - specific light and cloud formations are now a regular thing and they are beautiful and breath taking but they are born of turbulence. I vibrate now - it is weird and part of the Graves Disease from my understanding - my whole self just kind of hums and the dreams are bright and real and in those dream I am retrieving my parents from weird distorted gardens or trying to get out of zombie filled shopping centres whilst trying to retrieve children I have left behind and sometimes Mum is already dead and sometimes they sit up after embalming and they have trouble thinking and I see the photos of her from when she was young and I think of the person she never got to be - the person she actually was beneath the damage and that hurts most of all - because she poured those regrets on us in the last year - she told us about her loves and wants and wishes.

I wonder if the vibrations are the after shocks of turbulence - like there has been an Earthquake and the sea floor is still cascading as minute shifts in currents prod the now unstable surface and everything slips - crashing down into the abyssal plain smothering fledgling life that dared to try and exist on the edge. This is my life now - it is a new stage - a phase as yet unseen but I have no idea where I am going and I am not sure I am even steering. Our electric car broke down on Friday and I had to steer as it was pushed round the corner but really I was just making things easier for those pushing I was following directions and I don't even think it really mattered if I'd done it completely wrong. I am on that hummocky bit of the river after the full force of the rapids - but I don't know where the river leads so there could well be more to come or a water fall or slow meandering rivers or back waters that snag and down you.

All I know is the more you love the more pain there is to feel - there is no way around that - no way at all. So all there is is loss really. It grinds you away. Sometimes I think I am just echos of all those I have loved that I still love and that fill my heart and mind - they are there but where am I? What am I? How can I ever be? I have always felt I only really come into being around others - that doesn't mean I don't want to go off and have time alone but there are still those people there for when I return - I am still tethered - but now... I feel like a none person. I had to spend the weekend on my own and I realised I am 41 and no one can remember me being on my own in a building at night - not once - room yes building no... there has nearly always been room mates for a start from siblings to cousins to my nans to my mother to other students to Alaric to the kids to sleep overs with friends - so I went to invite people round for a sleep over and realised it sounded completely in appropriate and so I didn't send the invites and then I had to face being alone. My friend visited for the afternoon after I cracked and asked what are you supposed to do on your own? No really I don't get it and I didn't like it if I hadn't had the animals I am not sure what I would have actually done.

All of this I know is part of the grief but I am also really not sure who the hell I am and I long LONG to run and climb and jump and I know that is realistically unlikely at best - I watch my friends caving videos and I can't even manage weeding my own garden at the mo - for the first year since university I am not growing veg or herbs - I have planted nothing just scattered some flower seeds and bought already growing plants to pot up to try and make things look ok - but they don't because actual work needs to be done and sometimes I can't even get myself into a vehicle without help.

I am so tired but thrumming with energy at the same time - oh I want to go to the skate park and fail at doing stunts - I want to join the armoured combat group - I want to canoe in the canal.

Instead I plod along with crutch or sometimes crutches and slowly amass the kilometres to add to challenged I've paid to get medals from - I am walking 100 Km for a medal I've personalised for mum but it isn't even a proper charity walk or anything - its just a shiny medal I thought would fit. People like telling me what to do - I am struggling to even want to listen to them - I would say I am running of regardless except I am not but maybe this is the way to go - maybe the river knows - I was after all born of the Muddy Waters, I have the Estuary in my bones - I have found a part of the Severn to sit and be by whilst Mary is in dance and a robin has befriended me and tries to steel my chips - hovering in front of my face and I love the birds there - I see herons and swallows and house martins (well by the houses I do), and I get to see the mud banks and think about how I used to go down on the Thames foreshore with my dad and find bits of broken doll and weird green crabs that didn't belong and needed the warm water from one of the factories to live. I remember the big chunks of chalcopyrite they put in when the docks had gone and I'd planted trees there with politicians helping with the digging and how important I felt planting those trees were even though I had a huge chest infection and shouldn't have been doing anything - I remember my mums students doing an art project on the rivers and waters ways and how it was tied into those trees and then whilst sorting things for the funeral me and and my brother went to parts of it and my friend who works on it told me about the new larger project that takes into account the fens and marshlands and I just remembered my dad taking me to see the wolves in there large enclosure and how the one I liked to watch with their piercing eyes would trot over and look at me though the fencing and follow me as best it could and the walks learning about all the uses for nettles and that I don't think I've taught my kids to identify the trees well enough and that I loved the marsh with its hidden Iron Age footings and the little owl with apparent ears. And I miss all of this.

After Dad died I felt he was some how Old Father Thames - that was how I saw him in my dreams - but I live far from my rivers except it turns out there is a tunnel connecting the Thames and Severn so I felt/feel that that makes them one thing - but kind of not as well - I liked that connection and I longed for the sea and estuary during lock down and I love walking by the rivers and seeing and photographing their multitudes of life - I feel I am part of them - I am the will o whisp that is the marsh light and I am the girl who played in the river and went to the river ever day and who went to get their dad to rescue the kids who did not know or understand the river or when you should not go in. I first found rocks on our river bend and I dream of my river realm regularly - I showed Mary water plants so that they could know where not to tread and at my place along the Severn we were told the tide was coming in - that the bore was coming and so we waited and Alaric got bored and wondered off but me and Mary watched and Mary got excited as the mud banks were swallowed and I realised watching the calm shallows become chopping muddy hills of water - that this brackish world trapped and interlinking two worlds - the sea and the river - this is my world - with salt marsh to boggy patches of unknown depth and the wide wetlands with hill struck island and I feel the boats calling me and the reeds waving and recall why I love Wind in the Willows so so much though I probably am Mole.

The rivers gave me pebbles and pets that were wild from foxes to badgers to ducks to my new robin friend - and I am those cross currents and calm water turned to power churn - I can go against the flow or with - I can choose - but there is life and danger in this.

Recently as I walked down to the river to earn this gold heart with my mums name on it that is probably spelt wrong because I made it but thats ok because I always spelt it wrong I thought about Sabrina or Hefren as my dad called her and of how she is the river Severn and I can help but here the eulogy Alaric created from my mothers own words about the boats and the adventures here and dad had had and hoped to have again - the rivers connected but separate are them and I miss donning a wetsuit and swimming in brackish waters that tend to salt and going in little boats up the river. My brother is into canoeing at the moment and has my granddads boats - I wonder if he too feels this connection with the rivers and I know that sounds stupid but I have always been called to water as to rock and fire.

Maybe spinning around trusting the currents is the way to go and maybe backwaters and rapids all have their place though I would like very much to have my family whole and be picnicking on a sand bank as we used to do.

Body Blob (by sarah)

Again issue with doing lots of performance stuff is all the photos of me being fat - they are me doing things and I will myself use them but you know when good photographers still don't manage to make you look good! Well that... I am well aware that I have gained weight what with the miscarriages and just not caring with Dad's and others deaths.

We've been monitoring my weight weekly and everything I've tried results in 12 and a half stone :/ except that time I ate all the crap and I mean all of it from BBQ through to giant ice creams and I went down to 12 and 1/4 stone - the next week was period time complete with swollen painful legs and that was 12 and 3/4 stone but was then back to 12 and 1/2 stone the following week (it took about four days to loose the swollen feet and legs - something I have never before had outside of pregnancy and even then only really Jean's when I had all the blood clot issues).

The nurse for thyroid, diabetes and dietary stuff no longer exists as her role got axed at the drs - and I need to loose weight - I am literally carrying around half a me extra! As I should be 8 stone but the healthiest I've ever been was 10 stone when I was an outdoors pursuits instructor.

It's the mobility that really does me in with the weight or rather the lack of it and I am sick of it. Yesterday the venue we were at had no real food so I bought a chocolate bar but then felt so guilty about it I didn't eat it and instead ended up eating a really late dinner at home where I ate more cheesey type stuff than was sensible as I was REALLY hungry by this point.

I think I need to just follow what I did before with the nurse but am doing more work stuff now and I was so light headed, Passy outy and feeling like I was going to throw up that I just don't see how I can do that and be working at the same time :/

I have gamified my walking with Pokemon go and feel that if I can just shift some weight then my pelvis will improve and I'll be able to loose the crutch and maybe even go back to park runs or something - I have bought a load of medals ready to complete various challenges to help motivate me - they start with walking and ramp up so we shall see!

Please don't suggest the dieting groups like slimming world and weight watchers as they make me want to punch something and keep punching if I am completely honest! They are pretty much my definition of hell and I don't mean the food part of it - it's just a social dynamic thing - I have friends and family they worked really well for but they are not for me.

The Good, The Bad and The Ugly (by sarah)

Yesterday we went to the allotment to begin the slow down for winter.

Preping the allotment for some fruit canes 🙂 and broad beans, finding frogs which are now safely in Mary's container/fairy garden, digging up the last few root veg that were ready - all yay!

We also have late tomatoes which are still producing green tomatoes so it is time for more chutney making!

Discovering someone has stolen two of my galvanised herb pots turfing my rosemary plant which I grew from seed when we first moved to the cotswolds >:( They left the third so I think they must have gotten interrupted. Big boo >:(

There was also wood smashed up and thrown into one of our planters and the grumpy man who is sometimes there came and stared at me and the kids for a while before moving on :/

Ending with the frog pics because they are cute - Mary has named it Slimey unsurprisingly. It is in the Fairy garden because a) cats b) streamers.

Slimey is pictured her in the empty worry trays that I use for weeding.

Last night was the only opportunity we had to take the kids to fireworks but I hadn't slept properly and then had failed to have a nap so decided not to go with Al and the kids - he say's the fireworks would have been borderline for me as there were a lot of flashing crowns and wands and shoes and I hadn't had a lot of sleep so I made the right decision in not going - I want to get through this November without a seizure as they set me back so far and it's like I've hit my head all over again so I am being extra cautious because I am so much better that I just don't want to risk it - but I felt like a bad parent not going but Al would have had to carry a fold up seat and stuff for me as well and I think it would have made it miserable for everyone if I had gone - we toasted marshmallows over candles when the girls got back and I managed to cook my first meal proper with little mess and no burning or mess ups since the head injury (this is cooking on my own rather than with Al or Jean) - so pretty pleased with that.

However...

TW: miscarriage

Having nightmares at the mo - the next week is going to be tricky but I have craft supplies and have already made a bazzilion cards and keyrings - my plan is to bulldozer through - this is the day last year where I left the house walking and excited about all the awesome stuff I had planned for November and had to be brought home by a friend as thing started to go wrong very quickly and I couldn't even walk properly and felt like I had been hit with the flu hammer - nightmares are of course all hospital based or searching for lost babies/kittens/cute things or failing to rescue them no matter how hard I try - very grateful to the NHS and very aware I wouldn't be here if they hadn't worked so hard - I ended up with a server BP crash and seizure fortunately I was already at the hospital - this one has affected me far harder than the one in the summer - but it was a pregnancy that was older and it was far more traumatic. Trouble is I get cascade so the memories of that hospital trip flash to others including the trips to A&E whilst half way through Jean's pregnancy.

Big irony about this is that I can recall peoples birthdays and I even struggle with things like Christmas but this and the ectopic are burned into me. I accidentally woke Al up crying last night which I wanted to avoid :/

I'm also getting hacked off with myself for still being so drenched in this - it doesn't help that the pelvis has just not really recovered so I have a reminder every time I walk - I basically gave birth to the placenta which was the size of a small baby.

It's eating at my core partly because I fear it was perhaps my last chance to have a baby.

My craft obsession:

Card making is a big thing for me when I am feeling too frazzled or sick to do much else. Alaric bought me supplies, including a Christmas gift box colouring in book.

I've been making cards including ones of my St Oswold's picture I did in the summer.

Last night when I couldn't sleep I remembered I had lots of split rings to make keyrings with - so I combined them with my bracelet charms.

I am making lots of lucky dip pouches to go in the treasure chest.

I have to end the post with my guardian cat - Hydrogen has been through the mill of life and still likes to sit with me and purr. Here she is being a Dragon Cat with her horde of keyrings.

Hospital – The Bad and The Good – med update (by sarah)

After 3 yrs I am being discharged from the Head Injury Unit for Self-Care i.e. my quality of life is good and I am showing a positive trend in improvement and just need to keep on keeping on at my own pace - I am not back to 100% functionality but still have a good chance of reaching it! Neurology stuff for the seizure thingies needs to continue for now but this is still epic news - I was discharged from the physio a while back which ironically makes my time and fatigue management a lot easier as the hospital trips are the biggest drain!

Seizure stuff is a bit of a pain in the backside still - I haven't had anything major since the miscarriage but.... still getting muscle spasms, head pain/rushing noise - it's kind of both and I have no idea how to describe it but when it's happening my muscles are twitching worse than when the tens machine used to accidentally get switched up high! I also get colour drain in one eye and wet myself etc... I don't remember them but managed to have one when Al was laying next to me - it was mild but enough to observe the symptoms properly. My jaw also clamps down and I often bit the inside of my mouth or tongue.

Supermarkets... I still struggle with these damn shops - it's like they are designed to be maximum overload or something - but I can manage a half hour or so trip now with no problems - mainly I avoid peak times and being with the kids when shopping.

I am still having to have quiet breaks in order to get through the day - I can now skip rests but not for more than two days at a time and even then that is pushing it... but my speech is so much improved when I first went to the clinic it was still pretty slurry all the time and then it would get progressively worse the tireder I got - yesterday on 2 hrs sleep I managed an entire session being articulate and even laughing at the on going issues with face blindness (made a few booboos at the poetry festival with recognising or rather not recognising people!).

Mobility is in a little dip at the moment but that is not unusual - and is due to having had a little fall/slip whilst away on holiday and then walking all the ruins and castles and follies we could find regardless. The walking stick comes and goes and also is worse when I've had a seizure thingy - because it is something I have to use for pelvic pain, fatigue and sometimes just general managing to stand upright and not just tip straight over! Most of the time I don't have to use it at all! The last factor is the only one that the head injury has added the other two pre-date it!

The NHS have been fab with this but... getting head injuries picked up and dealt with is really hard, most people end up fending for themselves and here's the thing - if I hadn't had my family around to take care of me I am not sure what would have happened too me - I see some of our local homeless people and think about what I was like and... I still struggle with money and finding my way home - it would have been very easy for me and people like me to have ended up on the streets, in a very vulnerable position - but I have my family and they have made sure I was as safe as could be - I'm pretty sure others have not been so lucky, and I don't think there are the provisions in place to help them. I was being regularly mistaken for being drunk or drugged up and that kind of makes you invisible even within the A&E departments - something which I fear will get worse as funding cuts bite.

And back to that whole truma thing - hospitals.... I find them incredibly hard places to go into - they have saved my life - they have saved my babies and allowed them to be born, there has been care and compassion - there have also been sharp needles and knives, and pain and death and blood.. lots and lots of blood - most of the time my own but not always. Hospitals are places were I have been detained, places I couldn't leave (though I assume if I'd insisted I could have left), places where I have been strapped to beds or held down so that pipes and tubes could lit be rammed into me - emergency stuff is like this and for me I have sometimes been way more aware but unable to act on things. The idea that I might go in and not come out and that this will be surrounded by pain.... is always there - hovering with the smell of cleaning fluids, over cooked food and sickness that pervades.

Little side note here - the art works that are scattered around the hospitals became incredibly important to me at such times - sometimes they are the only things I truly remember from a hospital stay.

I had two hours sleep before the appointment because I had forgotten about it and then checked my calendar and there was the appointment large and bold and... in the block where I lost the baby and every time I tried to sleep all the stuff from before rushed back, for 18 months after I had Jean I had a reoccurring dream about being held down and crucified to keep her alive - I described it too Al and he was like, "that's a memory of them taking your deep arterial blood when you went into A&E" I don't really remember that happening, I do remember blood squirting up the cubical curtains and that it was my blood and I was pregnant but I can't recall which A&E trip it was but I know there was an old man screaming. Even things like my blood transfusion at 4 yrs old decides to come and haunt me on such nights.

If I know about the appointment I can prepare myself and sort my thoughts and write or draw the stuff away so I can sleep but if that doesn't happen we get what I had this time - dreams of machines where you feel like you are buried alive.

I gave up on sleep at 1:30 am and wondered down stairs to watch documentaries about Japan - there I marvelled about little old ladies that catch venomous water snakes that are 10x worse than rattle snakes - with their bare hands, wading into dark water caves in their flip flops - they reminded me of my nans - they way they chatted and got on with things etc... though obv. my nans only had adders and badgers to contend with but I do recall how they would chatter to each other! I watched deer being bowed too and bowing back at a temple and I rode my exercise bike with it's special seat to help when my pelvis is bad and managed to get myself physically exhausted enough to sleep from 4:30 until the 6 am school run start.

One of the dangers about feeling like this is that I don't want to go to the hospitals and clinics and drs so I avoid them as much as I can and sometimes my eagerness to be discharged is not because I am better but purely because it means I won't have to go to the hospital again so soon. Like wise I tend to put off going to the drs until something is really wrong.

So yeah - there we go - good thing head injury stuff is getting there and I know how to manage various things including the truma but things.... NHS is struggling and I am incredibly lucky to have physical stuff and not a mental health issue where the waiting lists and emergency provisions have all but crumbled.