gremlins in the womb escaping to cause hell

Otherwise known as Endometriosis. Every year my endometriosis has gotten worse. More frequent flareups. More painful flareups. The Mirena coil was a journey in itself the first time around the track. I will tell that story because it is relevant to the modern day dumpster-fire. As an asexual person the idea of anything being lodged in my womb was odd, never mind people being up in my business to lodge it. But to combat my endometriosis (at that time my GP refused to call it that insisting it was painful periods) I had tried simple painkillers, the pill, the injections every three months. Everything worked for so long and then just didn’t do anything anymore.

I got a new Doctor to talk to about my issues who basically said ‘whelp, if it walks, talks and acts like endometrioses then it is endometriosis’. They pushed a referral to gynaecology at the hospital and that was horrendous. The (female) Doctor spoke to me like I was a child and insisted it was just painful periods once more. But in the end she did sign off on me getting the coil put in. The first attempt was at a clinic in Edinburgh which was horrendous because I had to pass a line of pro-life abominations to get in the door. I was far more anxious then so my rage of comments I’d throw now never got out my throat. Needless to say the attempt to fit the coil with no general anesthesia went badly. I did get an injection of local anesthetic but no. I was in agony. A nurse was holding me down. The Doctor made the decision to stop saying I was in too much pain. My cervix are narrow and my uterus small and shy.

Because of course that would happen to me right?

So after a few more months of pain and torture I went to the local hospital and it was grand. There was fear there because you can’t eat before a GA and of course diabetes gonna diabetes. But it held together and off I went. The doctors respected me when I said my pump had to stay on. They asked for a blood test 30 minutes before surgery, just before, and said they would do another while I was out. It comforted them that my team was in that hospital and I had both brought contact details and pre-warmed my DSN (diabetes specialist nurse) that I would be getting this little op.

Don’t get me wrong….it is damn weird to have your legs in stirrups with your vulva hanging out as someone asks you to talk about something as they wait for you to pass out. Waking up with no glasses on while you’re being moved on a trolley is even weirder.

But it was worth it.

A lovely nurse gave me my glasses back and explained I may bleed for a while and that my underwear had been padded for this reason. She advised I not move too much as it may hurt. Then she asked if I felt able to test my blood or would I want help? That is the sort of care you want.

A chicken sandwich later and no issues at the bathroom and I was on my way. Excellent. And for four years the coil was brilliant. I rarely had issues with my womb and its runaway gremlins. But in the last year of its life all that changed and it happened that as it fell apart the world did too. I grit my teeth and said I’d bear it until covid was under control. There were more important issues right?

But before I knew it the pain was daily. It IS daily. I feel like I will pass out. I spend hours on the toilet. More crying in bed. And today I got the letter saying sure I am on the waiting list for a new coil but it will be 6 months to a YEAR before it happens. It is just heartbreaking.

And my letter has given a list of reasons to not get GA. ‘You’re diabetic’ was like a f you. Then a list of things I have already tried. It felt insulting. It felt like I was being told I would get the treatment I needed if I remained an irritant long enough. If anyone had read my file they would know I can’t do it without GA, that I have tried pills, tried injections.

No one willingly gets put under with their genitals hanging out unless there is a good reason for it. Dignity for patients please.

where you are matters

Seems many don’t know but in Scotland you don’t get an insulin pump because you want one. You get an insulin pump because MDI does not work. You have to PROVE MDI does not work. Where other nations want you to improve your HBA1C before pump, here it is almost the opposite.

You have to prove that ONLY an insulin pump could manage your diabetes. Funding here is kept in iron fists. When I was put on the waiting list I was told it would be THREE YEARS. I got mine after 18 months only because the Scottish Government released more funding to the NHS and

circled it for diabetes. My aunt who has numerous complications from diabetes only for hers two years later because her levels on paper looked too good. My own endo&dsn had to argue my relatively good hba1c was because I was either in the 20s or hypo and doing things ‘right’

Then you sign paperwork saying if you don’t achieve x and y goals they will take the pump off you again. Children are more likely to get a pump and just grow up with it as their tool. They take smaller doses etc. But adults? Getting any tech or aids (strips) is war. All out WAR

My mum has 0% chance of getting a pump on the NHS because her hba1c is excellent and she achieves this by TIR and not ‘swings and roundabounts’. Our mutual DSN told her that to her face when I got mine. Almost to fob off her asking if she found mine interesting. We don’t pay

anything up front outside our national insurance contributions here so the flipside of that is you don’t ask, you don’t want. You get what you NEED, MAYBE, if you can PROVE you need it and there is FUNDING, and there is a TIMETABLE. So yay ‘free at the point of use’ but. Urgh

Also you don’t get to choose your pump in my region. There is one pump and that is it. Some healthboards have variation but mine does not. We used to but then animas pulled out. So NHS Lothian is Medtronic or bust now. Unless you can seriously argue your case that it doesn’t work

Also you don’t get to choose your pump in my region. There is one pump and that is it. Some healthboards have variation but mine does not. We used to but then animas pulled out. So NHS Lothian is Medtronic or bust now. Unless you can seriously argue your case that it doesn’t work

changes and stagnation

It seems fitting that I did not write anything last year on this blog. I thought about it and I tried. Several times. Words just simply did not come in big enough chunks to justify bothering anyone’s email clutter as I saw it. The world last year was strange. In many cases, people with disabilities saw a leveling of society as abled people saw parts of the world through our eyes. We still remained very much plumb bottom of the food chain though and now that there is light at the end of the pandemic tunnel in some areas the gap is widening once more. It seems a fitting time to try and come back to this place and find what I want it to be. If anything at all.

I had to fight to be furloughed last year because neither Scotland nor the UK considered type one diabetes to be a high risk health factor and I work in a retail chain that sells food. My asthma just missed the cutoff too. Apparently I am not roided up enough. I knew my immune system or lack-thereof though. And I knew my work. And I knew my customers. So I fought. I am pretty sure I actually had covid-19 early last March when the symptom list was short and the information list even shorter. There were no tests yet. I was just to sit in my room for two weeks as my dog yowled from outside and hope I did not die.

It took a lot of arguments with higherups before I got that furlough and when I was sent back to work it was not because a health professional decided. My work just did. It was all rather shambolic. The Scottish NHS has done a wonderful job in dealing with the pandemic but as with every other health service it means it is now chronically behind. My contraceptive implant is now years out of date. Years. Thankfully it is somehow still holding off actual menstrual cycles but the agony of endometriosis is back to being a near constant companion in my day to day life. Nights are spent in pain in the bathroom and days groaning as I twist in my duvet covers. My mental health is shocking. I am pleased to report that on that front though I have finally begun working with a psychiatrist who specialises in the impact diabetes can have on mental health. The wait to be seen means I am in a worst state than ever and have had past issues with alcohol to contend with. But I am confident that now my care is more specialised, and I am seeing actual physiatrists rather than lower levels of the system, that this might actually work. Spending a lot of time wrapped up around my working from home mum just was not a great place to be.

My diabetes is getting worse with old age. It becomes ever more volatile and disruptive. I have tried working with different HCP but most of the time it boils down to the same problems with me. I have been diabetic so long that they assume I know best and I do. Kinda. I will predict how things will react best but that does not mean that I do not need help and many HCP have a set bag of tricks. What happens when their bag is empty and there is still no answer for me? And it is very hard, especially when mentally down, not to get frustrated at the same questions. Have you tried this or this? Yes. I have been at this a long time. Did it not work? Obviously not or I would not be here. It is not their fault or mine. It is just the circumstances I find myself in.

What does not help is that a possible answer is sitting there. We, the NHS and I, just cannot get the funding for it. The upgrade to my mum has a CGM system that would react far quicker than I ever could and halt so many of these hypos and hypers in their tracks. Libre can alarm all that it likes but by the time it has and I take on the glucose and the carbs and change the basal it is often too late. The lack of communication between the libre and my pump means there is still reliance on my brain doing a lot of sensitive maths. And that is before anyone factors in ‘doing X activity under Y levels of stress in Z degrees’. The next generation of care is here but it cannot be accessed. What irks me is that it is a funding issue and comes down to bureaucracy. The CGM would not cost much more than the libre does. I already have the funding for the pump. But my GP funds the libre. The hospital funds the pump ect. I am the patient and the individual but because of this will now surely cost the NHS more long-term treating my diabetes because of this money game. Readers, this is why I have not written in a while. I seem to just come, complain and vanish again. But perhaps that is what I need to do more. Have an outlet even if it is just talking into the dark.

Sometimes it feels like you have to be on your hands and knees with blooded finger nails trailing drips behind you before someone will tick a box and say ‘yes the situation is bad enough, you may now have this thing’. I do not have the spoons to do anything about that right now but maybe one day I will. Then everyone is in trouble.

break it down

  • the diabetic clinic scares me.
  • i will get my gp surgery to do the bloods
  • i am terrified about what they will say
  • sometimes not knowing feels safer than knowing you failed.
  • but i guess, getting the bloods and putting effort in means i didn’t fail
  • it is a hard life. but we do what we do

i am allergic to the treatment but you blame me for it failing….sounds legit

My twitter feed may imply the opposite but as it turns out I do not like hating my health care professionals. I recognise they do an incredible job where they often get little reward or recognition. But the thing is I fear this recognition on my part has led to me allowing them too much leeway in situations that do not deserve it.

 

I got my insulin pump in 2013. August to be specific. I expected a lot more from it then I got.

 

I quickly put it down to my brittle diabetes.

 

At each hospital appointment it was expected that I knew how to fix things and so I would. My hba1c was also given  as a sign that everything was ok. Looking back I realise I did not fight hard enough to be seen more often….even if the idea terrified me. I had the best HBA1Cs of my life when signed off unfit to work or study or generally leave my house. Hypo and Hyper with a few decent results mixed on = ‘look  how good you are doing!’ Um. No.

 

My results on the meter showed everything was a mess but somehow it feels that if the HBA1c is ok and therefore imminent danger is not there…you are sent to your nurse.

 

I have had amazing DSNs and horrendous ones. Some of the bad ones were lack of people skills and some were lack of knowledge. It is always hard to challenge the system and go ‘yeah but?’. So often I think diabetics just drop out of the system. We don’t book another clinic appointment. We just soldier on.

 

Often we then find that health boards hold us to random in regards to treatment. ‘Come see this nurse who does not know, understand or engage with you before you get X insulin, new tech, pump ect’.

 

It is bullshit.

 

I had to do  my own research and print of sheets of evidence to present to people at clinic before they considered that yeah maybe  I was not lying about eating or thinking things and actually something weird was going on. We now call it dawn phenomenon but for years I was the ‘bad diabetic’ who ‘did not conform’ and needed to ‘get it together’ and ‘stop lying’.

 

I have spent the last six years being accused of not knowing how to put a pump site in. As if multiple demonstrations, youtube videos and diagrams failed to penetrate  my brain. No. Turns out I have an allergy to teflon, a plastic used in many insulin pump connections. After throwing my toys out of the pram I was assigned a new nurse who tested this by giving me steel, rather than plastic ‘sets’, and my control has done a total 180.

 

But why did this take 6 years?

 

Why do doctors and nurses and other HCPs assume we are failing in our own treatment?

 

I know  I will have my clinic appoint in a couple of weeks and that is not enough time for my steel canulas to safe my blood test. I will be informing anyone who questions me that I have not made any mistakes but the system absolutely has. Whatever HBA1c I get is a miracle and anyone that tries to come at me for it will hear me.

because sometimes we need fun.

and it tell you more about me.

 

 

1. What was the last thing you put in your mouth?

pepsi max

2. Do you sleep naked?

Not often. I mean the pump is always there and therefore its pouch around my neck. Mostly in Summer I might strip but still be under my duvet. Yes I am one of those people! My parents know how not to come in and only ever open the door enough to let a dog in or out. It is Senna who is like ‘why this small gap’ *smash* and I am like…hun….hun no.

3. Worst pain I’ve ever felt?

When they tried to put my coil in without knowing me out first. I have tilted cervix. Am a virgin. Have a small vagina, vulva, and everything else anyway. My body produced no lubricant. The Doctor at the clinic gave up due to lack of natural aid and signed me off to get put under at the hospital for it.

4. Favorite place you’ve been…

Santiago Bernabeu, Madrid, Spain. Home of my boys, Real Madrid. I’ve been twice to see them play and done the tour both times. When there I just feel content. Happy. Among my peers. Language does not matter. You nudge against someone while trying to look at something and you throw your arm around to steady yourself and then you both look. When I was at my most anxious…I wasn’t there. Never there. 82 thousand people screaming and I was calm for the first time ♥

5. How late did you stay up last night?

I was in bed by 7.30pm with my migraine last night. 

6. If you could move somewhere else, where would it be?

No where new. I’d just love to be able to have my own flat I could afford in the town I grew up in that Nico could come to.


7. Which of your Facebook friends lives closest to you?

My mum? 😛 My neighbour is the next door over. We gossip when the armed police raid the guy in between. I wish I was joking.

8. When was the last time you cried?

Yesterday. I heard my eternal captain of Real Madrid, Iker Casillas (currently of Porto) took a heart attack at Porto. Iker….he was a big thing in my depression years for me.

9. Who took your profile pic?

On fb it was my friend Steph in Australia. My twitter one was me as a selfie with Nico and my icon here is
[personal profile] delacourtings

10. Two of favourite films?

Monsters Inc & Return of the Jedi

11. What’s your favorite season?

Spring. Not too cold. Not too hot. Diabetes doesn’t tend to have a moment.

12. If you could have any career, what would it be?

Author of history books.

13. What was the last book you read?

Feminists Don’t Wear Pink (And Other Lies): Amazing Women on What the F-Word Means to Them
by Scarlett Curtis

14. If you could talk to ANYONE right now?

My brain just keeps saying James VI of Scotland? Tell England to ram their throne and never let us unite. But then, the world would not be this if it didn’t happen. What would England and Scotland lose development wise if too busy fighting?

I am not into talking to the dead.

The living, ….I don’t know.

Maybe an athlete that I would get up during the night to see perform and smile at when everything else seemed horrendous. To just say that.

15. Are you a good influence

Probably not.

16. Does pineapple belong on pizza?

Everything belongs on pizza and if people don’t like it then more pizza for you. Get an individual and stp judging people.

17. You have the remote, what is on right now?

I have a tv with all sorts hooked up in my room. I need not squabble. Wrestling or wwe or whatever else I care for in that moment.

18. Two people, who you think will do this?

Whomever wants to be a little bit sarcastic.

19. Last concert?

Fal Out Boy I think

20. Favourite type of food?

Anything that lets me experiment with herbs and spices

when fun ruins everything

I was thirteen. I had gone home from school for my lunch as I did most of my high school career. As I did most of the time I had put the music channels on. I was dancing. Badly but don’t judge me. But then suddenly, was I went to put my plate in the kitchen, my cat Maxwell appeared from nowhere and I fell over him and stood on a screw. My step-dad (paw) had an ‘entertainment system’ from the early 90s. He still holds on to it.  It had screws on a square platform that formed a speaker tower. But he had not screwed them into the carpet…because that would damage the carpet. But he had not removed the screws either. By a complete fluke the screw went straight through the main tendon on my right foot.

 

I hopped towards the kitchen thinking motherlsjrbgsr that hurt. Then I realised that no, that reallly reallllly hurt. I dropped to my knees, legs up in the air behind me and crawled to the phone where I phoned my mum at work and somehow tried to explain that I had a hole in my foot. She was, understandably, horrified. She said she would phone the Doctors and my granddad and then call me back. I remained on the floor and glared at the, innocent really, cat.

 

When mum called back she was notably calmer and said my grandad would be around soon and that she had called the school and Doctor and I was off to see the nurse. I remember hobbling to my granddad’s car and trying to explain what had happened. He was in disbelief. So was I. I still am, really. Who does that? Honestly.

 

The nurse was even more perplexed but I was left even more so when I was sent on my way with fat plasters and some iodine. I had a hole in my foot. At least at school I got a lift pass for three weeks. That meant I got out of class five minutes early and could take a mate with me. It made me very popular for a girl that was bullied the year before. I took great joy in not taking any of those cows with me in the lift. Instead I took other bullied nerds.

 

I could also wear whatever I wanted on my feet on accord of whatever I could GET on my feet. As it happens it was my mum’s pale blue sketchers and wasn’t as cool as I thought.

 

Anyway.

 

For years I kept feeling pain if I walked for a long time. Like I had a stitch in my foot. Eventually I went to the Doctors to be informed that I had tendinitis and I should get rid of any pump shoes, high heels and think carefully about anything I bought from then on in. I was gutted. I knew how bad the condition could be. My mother has it in one arm from years of being a typist and shoving the …heavy bit, back into place. I had grown up having to help her put her bra on, pick things up, carry things because she was in too much pain. At one point it got so bad it went up her whole arm to her shoulder and left her like a puppet without strings. To be told at 21that I had the same condition was utterly devastating.

 

I followed the advice given and other than weddings and my graduation my heels remained confined to my wardrobe. When I was at a wedding with one of my besties recently they started to hurt my tendons and generally my feet so I went into Matalan and got flat pumps  that I will be careful with and left my beloved heels in a charity shop.

 

As time passed I have realised, with Drs, that the tendinitis has spread. My unconscious attempts to protect that first injury put more strain on the other foot and lead to the development of the condition there. Then it spread up to my ankle joints, my shins, my knees and today at 27 if I am pushed too far I feel it in my hips.

 

Frankly it is not respected enough. I look ok. I don’t use a cane or a chair. People think I can manage. And I am not good enough at telling people to fuck off. Sorry not sorry. When I flare it feels like I am being stabbed by that screw again, over and over again, but this time it is so many other places. I had to quit a job I loved because it was at the top of a hill and the pain of getting there was too much. I had to oraganise my dream trip around when and where I could walk. Now I am 27 people don’t give me the same shocked face and spurt out ‘but you are so young’ but I still get disbelief. I still get pity that doesn’t help instead of aid that could. I am taking the lift even if I look like the stairs should be ok. Deal with it.

 

All because I danced and was happy and fell over a cat.

21 years

21 years ago I was taken to down to my local GP with my mum. I knew something was off because my mum was talking me and not my granddad. My mum didn’t take me to places like the dentist or doctor because she worked ridiculous hours at a um tv company popular at the time to keep a roof over our heads, food in the fridge and a car out front to get her to work. Partially successfully.  Bank holidays where I could stay in bed longer and then get walked to school by my mum were amazing and rare.

 

She absolutely did not take Wednesdays off to take me to the Doctor. Especially when I didn’t feel sick. Ok, so I was thirsty all the time and I craved melon like a beast and I was aware we kept walking home later and later at night because mum and gran kept having hushed conversations in the kitchen. But I didn’t feel sick. That is because they noticed so soon, before diabetes could ravage me too much. They knew the signs because my mum is type one too and so is my aunt, and an uncle on the other side. We collect them, you see?

 

So I sitting at the Doctor’s surgery thrilled to be with my mum on a school day but terribly confused.

 

“But why are we here?”

 

“The doctor needs to do some tests.”

 

Whyyyyyyyy. I’m not sick.”

 

Then she looked at me funny and I went back to swinging my feet off the musty chair that was far too big for me to sit in. I always liked my GP. He did know me but he always reacted like he knew me, unlike some others at the surgery. I don’t remember what happened next other than I failed to give a urine sample and the Doctor needed one and suddenly we were back in the toilet of the surgery and I was getting sugar free ribena shoved down my throat. It was horrendous. I still cannot drink it to this day. I wanted to know why I had to pee? I wanted to know why I couldn’t have diet cola, too. I did not grow up on sweet drinks because of mum but the ribena was foul. I remember saying I was full and being forced to drink more and told to pee! Pee in the cup!

 

When you have a vulva aiming your pee is hard. Sorry to gross you all out but I still miss half the time, get stuff on me, and end up in a rage every time I need to give a sample. But a six year old not knowing why my suddenly weird doctor wants my pee? Traumatic. Eventually I got enough in the cup and was dragged back to the waiting room where I then got angry and bored because if he wanted it so badly why was I having to wait?! 

 

I don’t remember what must have been him sticking sticks in it and telling mum we needed to go to the hospital in Edinburgh, for sick kids. I don’t know if he took blood. It must have been a while before we left because my mum called my father at work and asked him to come home. Wow. They were divorced at the time and to say they loathed each other is a gross understatement. They could barely hold a civil conversation. But he came from his work in Edinburgh and we all bundled into mum’s very small car and headed….back into Edinburgh.

 

I remember being elated that my parents were in the same place. I guess I didn’t pick up their horrid tension. I was probably too worried myself. That car ride was the first time it was mentioned that I might be diabetic like mum. I cheerfully declared that was fine. I’d get my own bottles of insulin and my own compartment in the fridge. My father sighed.  But some part of me felt weird, I remember that much. The ribena felt like it was stuck in my tummy too.

 

My next memory of that day is of nurses trying to take blood from my elbow region. I remember I was wearing a pastel green jumper with a cat on it and A, B, C. It was my favourite pass me down from a girl at my mum’s work who had a girl a year older than me and would send me binbags of clothes at a time for years. Kept us going.  I remember the only time my parents every worked together as a unit. All I had ever dreamed about in my life.

 

And it was to hold me down as I screamed.

 

The nurse was a trainee. Now, I ask myself why she was anywhere near a children’s unit and why still she was trying to get blood from possible diabetics. I was not in DKA but my veins were not exactly standing to attention either. And I was little. Six times she missed the vein. It took my parents holding me down and a more experienced nurse to get the sample they needed.

 

I can still remember the tears in my mum’s eyes and the horror in my father’s. He hugged her after that. It felt like the world was ending.

 

I don’t remember being told I was diabetic though my mum says I brushed it off as no problem. No big deal. ‘That is what mummy has?’  I had been getting her things for hypos for years. I did not realise what had just happened. Not at all. If my parents cried I didn’t know about it. My most-recent step mum came to the hospital with books. My mum brought in videos from home. I felt stabbing an orange with a syringe was ridiculous because I was not an orange and needles did not scare me. I wanted to go home immediately. I was in a ward with children recovering from DKA and wailing parents. That scared me. I felt fine. I was fine. Ish.

 

I was excited about being diabetic back then. I was intrigued by the blood testing meter which mum didn’t have one of! She immediately demanded one after finding out that such tech was available. I was thrilled, if not a little disappointed, to get my insulin bottles and find they were a different colour to mum’s ones. I was special. She had blue and yellow. I had red and green.

 

Life did not change so much at first. I already had sugar free drinks. Mum already made us the same meals and hers had to fit her insulin so I slotted in nicely. It was not until I wasn’t hungry and had to force food down that it felt odd. My father’s fear and careful measuring was difficult too. I still feel really weird when I go into a certain pub in town. Me, my father and stepmother used to go in there if they had money. She took me to the loo to do my jag and it was the first time I said ‘no, I ‘ll do it’. I was in the same place only a few weeks ago. It still feels a weird place to be even if it all looks totally different.

 

I didn’t feel strange until I had hypo in school over a year later. I was put in my teacher’s chair and told to eat digestives while we had story time out of nowhere. I remember enjoying my biscuits and then realising I was being glared at.

 

I wasn’t special anymore; I was just different.

 

And that started 21 years ago today.

 

 

excuse me but which way is up?

The worst issues I have ever had with anti-depressants other than them not working have been insomnia when I start a new one. One of my very clear memories from the first time I took anything was when I started citalopram at 20mg and only slept an hour or two a night for a week. In that week I read a lot in bed and one night I read Michael MacIntyre’s book and had to muffle my cackles at 4am as everyone else slept. Other than that, nothing.

I have been really lucky that way.

pc-and-video-games-games-switch-lego-harry-potter-collection-nintendo-1

 

 

 

 

 

Well that changed last week. My duloxetine dose was doubled and woooow. Also, I have seen a lot of articles floating around talking about how it is the worst but I am ignoring that cause hey I have it now and ‘I read this on twitter’ is not enough of a reason for my Dr to wean me off it again. Anyway. Wow. I now get what people mean when they say they feel like they are floating. It is weird and not fun. SO not fun. I felt like I was anchored to my mattress by …the bit of leg just above my ankle. And the curve just past my wrist. And that everything else was trying to drag me away. But I also felt like I was too small for the body I had. I felt I had to stretch myself and curl everything and try and fill things. I never could. All I did was strain muscles. The more muscles hurt the more I became convinced it was because I could not fill my body so I stretched more. I tossed and turned. I had hot and cold flushes that were far worse than any I have experienced with thyroidism. Honestly, it seemed more like a preview of menopause.

 

At one point I became convinced that one of my dogs had peed on my bed or that I had peed in the bed! I was convinced the sheets felt wet but after rambling at them for….who knows how long to be honest, I felt the sheets again and they were bone dry. Had it just been me sweating? Was it just my imagination? I have no idea.

 

I do know I would randomly start babbling at my dog at all hours of the day. Nico tends not to spend his day with me, preferring to sit on the stairs or on a chair in the living-room so he can watch the outside world and guard us from its evils. For those interesting days he stayed on my bed and if he did leave he often appeared at the top of the stairs and popped his head around the corner as if to check I was still alive. This matters a great deal more when you remember that Nico now struggles to get up and down the stairs. And as soon as I had heard him clamber up to check I’d hear him wander back down to see his grandparents. During the day he’d camp out basically on my head. It is almost as if he wanted to make sure I didn’t do anything too mental.

 

I would dream that I was made of lego and floating in ….space? A dark black space of some sort anyway if not Space space. Anyway I was floating and trying to make a lego globe of the world but I pressed too hard on to the top and it shattered so I shattered and we all died and then I spoke to my dogs about it cause….obviously?

 

What did not help is that I came down with some sort of illness at the same time because that is the sort of luck I roll with. Nose like a tap, banging sore head, cough like a chainsaw. That sort of thing. I coughed myself to the point of barely being able to walk because I had hurt all the muscles in my stomach and back. This added to my rolling about trying to ‘fill my limbs’ in an odd way. I would sleep for ridiculous amounts of time but could not determine if that was all from the medicine or from being sick. Things are on the up now but there is still a long way to go.

 

I need naps during the day. I sleep a lot at night. I don’t panic as much but I still feel rather spaced out and empty, waiting for the hours to pass so another day has gone. Pressure is starting to come in reminders that ‘they will be settling so…you have to start doing something’. There is no regard that this still not be the right dose. That I need energy to do things. That sometimes it takes more energy to stop a panic attack than to let one pass erupt from within.  So I am still working on which way is up and which direction I am meant to go in. Easier does not mean it is not hard.