the pump saga: a new hope

In February I wrote about how I felt about metronic replacing my animas pump. I was not happy.

Now? Now I am happy. In fact I am really desperate to get my mitts on my new pump. The animas is driving me to distraction. The pump itself is fine. It is grand. It does the job. Or it did. My diabetes has flipped its own table again and decided on a new rule-book and I’ve not finished reading it all yet. It does appear those wizard things will be useful though.

The problem is all the things that come with the animas. The cannulas and the tubing. If I need over maybe 9 units of insulin at once I stare at my pump, sigh, and cancel everything. I then have to put it through not as an ezCarb or ezBg but as ‘normal’ bolus in smaller amounts. Anything over 9 will flood the cannula and I will get a couple of units while the rest pools in the gauze. Too often I did not realise this, trusted my pump, and had unexplained highs a few hours later only to realise the area around my set was damp and I could smell insulin.

 

No one should have to life with that uncertainty. If the pump says it needs to give me 13 units at once then it should be able to do so without issue. This can happen on new sets, day old sets or sets on their last day. So, it is not like I can say ‘well I’m a 2 day person’ and change earlier. Of course, having to bolus this way leads to questions at the hospital that accuse me of being a failure with the machine. ‘why did you just bolus with no bg or carb info’. Well, I didn’t. So jot that down. ‘what are you doing wrong with the set?’ Nothing. I’ve been at this a while. I know how to put a set in.

 

I am tired of staring at white material hoping it doesn’t turn gray due to getting wet. I’m tired of smelling the horrendous stench of novorapid. I’m tried of not knowing if I got any insulin or how much. I’m sick of going high waiting to work out what I did get. I know that many who get this frustrated take a pump holiday but I can’t. I have my pump because I cannot function without it. Without my pump I was so unstable I could not leave the house alone. I could not work. I was utterly exhausted and the sickness from my dawn phenomenon lasted all day rather than the couple of hours it does now. Ketones were a regular part of my life. I simply can’t take a break.

 

The thing is? The metronic may be no better. That would be horrendous but at least while I don’t know that I have hope. I have a date in place where I think ‘this could get better’. I officially have a date too. Later this month. It is hope.

 

 

 

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slow progress but all mine

Thankfully this has nothing to do with health. Also, yes I am back la la la I will try be around more. Slow progress and it is mine and it has nothing to do with the gremlins but instead my bedroom. Decorating. DIY. Scary terms for people with fatigue and a red screen saying ‘hypo alert’ does flash across the eyeballs when I think about my diabetes. However, due to a lot of reduced basal rates and many libre checks to be sure.Very sure. Sure sure Sam? IS THAT ARROW STILL STEADY?! Ahem. I have been decorating without too much incident.

I am not great at it. I would not get my own TV series in the 90s but hey,  I’m doing it. For the first time I am also doing it myself. Usually I say I am going to do my room up and then bake half of a plan before my Paw comes in and takes over with a plan drawn on the back of a white envelope that probably brought him a random credit card offer. He always has the hoover with him and I spend the next week wanting to blow the damn thing up for always being in my way. Oh, and the room never gets finished because he sort of does most of it and then floats of saying ‘tomorrow night’ and then it is five years later and I bake up the next DIY plan. So this time I decided I can and will do it myself.  I made myself start to move quickly by seeing an add on the TV for a sale in Bensons for Beds and going out three days later and buying my first ever double bed and mattress. I need a very hard and very expensive orthopedic one for the mess of muscles and bones masquerading as my back, you see. So, that gave me a countdown. I had to get moving.

 

I am not entirely convinced I am finished ridding my room of crap but I think I might be. Maybe. It is a good possibility. I do not think I will ever understand just where the hell I was keeping it all. Or why for that matter.  School work from fourth year French at school…yes I am sure that will be needed one day. Paw dissembled my desk and removed it and mum helped me move some furniture around the room and after that it has been me. Me and my not knowing what I am doing. Paw was very hands on as I grew up. He never got someone in to put a floor down; he’d do it himself.  He would sit and rewire plugs and build things from old things in the shed. The problem was he never showed me how to do any of it. It was not because I was a girl; it was just that he liked to get on with things himself, unbothered. He is the sort of guy that needs a room totally empty to paint it while maw and I will just shove the bed over a bit and paint around things.

 

This does, however, mean I am puzzled by light bulbs and the slightest of hands on things.  One time when I was seventeen they went on holiday and my bedroom bulb went. I clambered onto my desk chair and bravely attempted to change it. All I succeeded in doing was dislodging my light-shade and causing a spark that nearly gave me a heart-attack. I used my lamp for 10 days till paw got home.

 

No matter. Onward, I decided. I got a new desk chair for this new room as the old one kept making alarming noises and was all burst and horrified my paw by putting Japanese craft tape across my bedroom floor to outline where the new bed-frame would take up space, then measuring the gap between the tape and my desk. Dimensions of how big my chair could be innit? I went and bought said chair and declared I would build it myself. I lowered my basal. I got all the bits in a row. I looked at the instructions. I ….was utterly bamboozled. Washers? Bolts? Eh? I wandered down to Paw, steel bits in hand and raised an eyebrow. He smirked over his cornflakes and showed me what ordered the washers went on the bolts and away back upstairs I went. I found I couldn’t get them to go in or stay or tighten. Paw ended up building the chair. But hey, I tried.  I tried and felt good for trying. I also made sure things progressed faster than if I had left the box to sit and wait for Paw to start the whole chair himself. So there is that.

 

It has taken me two weeks to paint…basically a wall. My back hurts. It takes coats. Sometimes I come in from work and just think…no. But now my once lavender wall is duck egg and I did that and I am proud as punch. And not a hypo in site! I always go hypo when painting walls. Always. Having my migraine disorder under control now also meant I was ok perched on little step ladders to get the high bits. Paw would have taken the skirting boards off altogether to do ti all but masking tape worked for me. No spills. Genuine personal thrill.

 

Moving all my TV stuff and computer stuff and…cables really. I mean cables. Don’t let your cables get tangled guys. It is a long, hard, swearword filled road to fix. That was a journey.

There is piles of stuff everywhere. It would drive Paw wild but I don’t mind cause I know what is in each pile. I finally have all my diabetes and gremlin based medications in one organised set up rather than ‘there is a space here, a bit of a space there, oh shove that in there’. I am taking my time  but it is working out as I want it.

 

Not having the space to hoard…well, shite to be honest has been good for my mental health too. It forced me to get rid of things but also to try work out why I still had it. To remember where it came from. To visit things in my head I had literally shoved to the back of a closet. I also had a very odd afternoon of getting rid of old handbags where I knew how long I had had them entirely because of which type of blood testing strip I found at the bottom of them. That was a trip!

 

My room is slowly transforming away from being half study/half bedroom and firmly into a bedroom come personal space. I know I will probably never move out of my home and away from my parents. I’m just not well enough for that and neither are they. They care for me but I also care for them in regards to taking care of the house and making meals. My maw’s health suffered greatly when I went to Australia to visit our relatives. I exist on a more even footing now with more responsibilities and such. It is nice to see that feel as if my room reflects that. Like we have a wee home-share going on.

 

Nico the dog is not impressed, of course. He often comes in, wanders around, barks and leaves. I don’t think he will be happy until the room is finished, the new bed is in and not lodging at my grandparent’s garage and he can claim his spot and go back to sleep.

 

 

my place here

Finding it is hard.

 

It gets harder when website and news sites and social media sites and so many more make a big deal of blogs. Bloggers. Blogging.  It has sort of become a thing where if you have not ‘made it’ then well, why are you here at all?

 

So I didn’t talk.

 

I did not know what to say.

 

Life is hard. I got the letter saying I will get a new insulin pump weeks ago. There are things I should do. Adult things. Ask about supplies and timelines and details. But I cannot. I am frozen. I was promised security and it has gone. I was given a choice and that has gone too. I do not like my second option. I do not like the screen or the wizards or any of it.

 

I want to stay as I was.

 

But money did not ask me.

 

 

I guess my place is now gaping at the world and the questions and the answers that don’t fit me.

Lucky.

Windows updates when I did not want Windows updates have erased this posts so many times that I wondered why I bothered. It kind of felt like another way Westminster was kicking me in the teeth. I get political. Often. I go out on the beat for my candidate and I do that until my tendinitis is screaming and my fatigue aches. I do it because I believe in what I am doing.

 

There are far too many people in the so called United Kingdom right now in dire need and that goes far beyond any health aid I’ve mentioned before. There are people being told the best that can be done is three months on an air bed in a leisure centre or town tall while the thing most likely to kill them is taken care of. What about all the other checks? What about how being IN those places could kill people.

 

It destroys any other post I thought of putting together. I am safe. I know my doctor is close. I know my animas delivery will come. I am lucky.

*brushes dust off*

 

*dusts place off* Oops? I graduated. I went into that ‘why can’t I get a job everything sucks’ funk’. But then my good friend was writing about Nasty Women and some experiences you get being women such as male doctors trying to explain to women what a vagina looks like and things like that and mentioned me and my endometriosis rambles here. This reminded me not much of any rambling had been happening here. Oops.

 

So, bits of this were written up a while ago  but then I slumped into who cares? Well I care? I like rambling to myself and hey if anyone reads anything here and it helps then cool.

 

What is new? Many things on the medical front and when I think on it more perhaps that is why I have been so quiet. A lot of medication got changed and I feared it not working. Or thinking it did and being proved wrong. Basically I feared looking stupid and that is a great place to start because my anxiety has been a real issue in the past twelve months. Again.

 

I cannot say when it began to creep up on me again. I think many would say I never got to grips with it at all but I certainly noticed a fall off the cliff where the fuck is my parachute change. Ahem. Exams are hard and I was coming up to the end of university. The Big Ones. My dissertation was crap. I knew that. I was ill with pneumonia while asthma I fought for years without knowing I had got worse and worse. I freaked out. I tried. I cried. I did my best. I guess that is all anyone can ask and that includes me of myself.

 

(I’m writing this knowing I’m going to link it to Steph to go LOOK I CAN UPDATE and yet I am anxious. English is her thing, guys. So there is a huge change she will see LOTS OF FAILS in how I write things and that makes me anxious which is ironic because HA. Not that I care overall cause it is Steph so boo bitch)

 

But the fact that I am so anxious at such a thing when I know damn fine she may tut and roll her eyes and think ‘what is this’ while never actually coming after me or hating me or disowning me says a lot. I mean she can’t disown me we’re going to Australia in six months. (Hahahahahahahaha fuck). Who gets tied up in their own chest over the idea that their friend might go ‘that grammar is not right’? Me.  Fail.

 

I said in a last entry moons ago that my Dr changed my medication. Basically it has meant that for  nearly a year I had no medication that helped me with my anxiety itself. I had medication that helped me with depression and if I am  honest it did a pretty shit job. If I am even more honest I stuck with it for as long as I did because a, it is what my mum uses and I thought if she can hope on it I should be able to (what?!),  b, it did so shit with my depression too that going to ask for something else seemed too hard.

 

For the last couple of months I have been on a new pill to aid my depression and anxiety and I think it works? I’m unemployed so anxiety and depression levels are relative at this point I think but at the end of being on fluoxitine alone I was having panic attacks nearly every day. Several times a day. I’d phone friends and I doubt I made sense. I tried to talk and open up but I didn’t know what I needed or wanted to talk about? I just needed them and that…doesn’t work over phone lines.

 

I take a pill every day to try stop migraines which it does until it doesn’t. Now when I get migraines they are far more like the symptoms you hear on the tv and read in books. Before I felt dizzy and banged into things and got tired and a million other things. Now I just …hurt. And I can’t be in supermarkets because their fridges and freezers make me want to claw out my own brain with the nearest blunt object which in most cases is probably a garden trowel.

 

Still I take anti depressants to make me sleep knowing that isn’t right but neither is not sleeping. If the pill that keeps you human is the one that makes you a zombie do you take it or neither or both and hope?

 

I joke I am the walking dead but I feel it. Setraline to stay sane. Trazadone to sleep. Levothyroxine to get up in the morning. Then that tiny white add on to stop my brain erupting within itself.  I didn’t update for ages because it would become like this. I blink and I can HEAR the image right itself across my vision. Across my brain somehow.

 

Yet  I did not start this over that…but I did not start this months ago because it would BECOME that. Odd world.

 

Endometriosis. You auld cunt. My implant went into my womb on the 14th April 2015. I’m the only one counting but I actually found the card today while looking for something else so huh. There you go. In theory that should mean that until the little coil needs removed I should have no issues. I already have issues though. 1: The writers of the card has turned the 2 into a 0 so the date it expires now reads 2020 when it would run out if used as a contraceptive this completely invalidating my agency as an asexual woman stating it will not be needed as a contraceptive and so it CAN remain in place until 2022. 2: Nothing stops Endometriosis the way it says it will.

 

I still feel cysts pop. Mini ones. The Drs know they are there but have no proof as they grow up and pop so quickly. I feel like a mad science experiment at all times. It is so demoralising as well because  I guess at least with periods a person can have a general idea of when the pain will stop. Or at least when it will fade into that achy discomfort. Now when my endometriosis flares it can last for days and there is no comfort of  ‘well by X I should start to feel Y’. The good thing about the community of people with this illness is that we band together. I am not strong enough right now to demand change to our treatment and more agency when pushing for treatment such as hysterectomies. Others are though and so that for me. Just like I did more before. When I am stronger in myself again I will take some of the weight back.

 

All spoonie circles are like that though. People think ‘community’ is just sitting there complaining about what hurts and why and sure we do that. We commiserate with each other but we also work together to better our situations whether that is sharing tricks to cope better or pushing initiations to make changes to better all of our lives.

 

 

So I guess this is a ‘hey i’m back’ and we will see how that goes. One day at a time.

those tumblr things

be you

i’ve a million things to say and lots of word docs on the way to saying it but this week has just exploded with friends saying things and family and the media and all about how to find your way and stuff.

 

Be you.

 

Don’t apologise for being you.

 

Love you.