status of the gremlin

One of the things that I hate about being disabled with autoimmune diseases is that being ill is different. For one, if a regular person is ill for seven days then I will be ill for closer to fourteen. Ridiculous. Growing up it was even harder because back then in Scotland, diabetes fed their insulin. I took set doses at set times and then set amount of carbs around that. It didn’t matter if I was unable to look at food. My insulin could not be changed and in the time of mixed insulins, you literally couldn’t separate your basal from your bolus. I remember many times sipping down Lucozade for ‘dinner’ and hoping I wouldn’t throw it up and then have the conversation of ‘how much do we think you absorbed before you spewed? cause if none it is another bottle of torture for you’.

Even now though it can be hard. Staying hydrated is hard and more difficult for diabetics than ableds. And even if our blood sugars are ok, dehydration can send us to DKA city very quickly indeed. And that shit kills fast.

That is is why even before plague times, being scoffed at and told ‘it is just x, y or z’ illness galled me. For you maybe? Not for me. For me, this cold could become a fight to the death. And that is before you factor in that everything is more likely to go into my chest than yours and pneumonia fucked me the fuck up when I had it the first time. Round two was only marginally better. And that was vaccinated. If I hadn’t been vaccinated I would have been in hospital no doubt.

This is brought to you by day ten of tonsilitis which just feels excessive. And I’ve tested negative for covid but at the same time I feel paranoid about testing. I’m trying to protect our supply given restrictions are to be lifted and prices introduced.

I just feel there is something deeply revealing about a person, in a disturbing way, when they say ‘it won’t be that bad’. I survived pneumonia and now have to take an inhaler every morning and the slightest cough opens the scars on my throat and lungs and I taste blood. But I survived right? The worst of times really do bring out the worst of humanity.

trying to exist

When you learn diabetes has claimed another scalp. Sigh. I pondered whether to mention this but I think it is important. And people not worried about covid should read this. SOMETHING made my immune system attack itself when I was 6 years old and my immune system WON but failed to STOP. It went on to destroy the beta cells in my pancreas and thus I am type one diabetic. My immune system just went red rag to a bull. Injections daily for years. Now hooked up to a machine 24/7. Now we are only a HUNDRED years clear of the first type one diabetics surviving.

Before 1922 it was a 100% death sentence. No ifs or buts. So we are still learning about what this disease does. And the more we learn the more we realise that the immune system doesn’t stop. It becomes a bad partner in stopping things like the cold, flu, chest infections, or anything else and instead goes for other parts of the body. I knew this. I resigned myself to this. I follow in the footsteps of aunts and uncles who are type one. I saw them develop the ‘oh, yes, that is because you’re diabetic’ fist. Hypothyroidism. The next hormone based system your immune system doesn’t know to stop attacking. Suddenly your body can’t regulate or create thyroxine and you are so tired you can barely function. No biggy. Here is another prescription. If you’re diabetic you are 4X more likely to be depressed and anxious. Therapy and more pills for many. Myself included.

When I started to wake up with pins and needles in my hands I thought it was the start of nerve damage. Coming up 25 years of this disease….ah well I thought. I will adapt as it comes. Turns out no. After some recent blood work it is better….and worse. It is not nerve damage but it is my immune system going for something else. This time my red blood cells. I’m now deficient in vitamin B12 because I can no longer absorb it properly. The immune system wouldn’t settle its tea kettle. I don’t have answers as to how but I know I’ll be on more treatment for life. And why am I rambling. Ok. Because estimations put survivors of covid at between 1 in 4 or 1 in 10 to develop type one diabetes. And that is the info we have so far. So ‘everyone is gonna get covid’. Sure you survive. What then? Do you think your health care system can cope? I assure you it takes a lot of work to be a specialist in diabetes care. And if you live in a place like Scotland then you won’t get handed a pump. The rules will tighten. Injections are cheaper. Of course, if you live in a place where you pay, it is the 6th of January as I write this and people have already hit their two thousand dollar deductible on health care before insurance kicks in. Six days. My health care costs thousands. Tens of thousands a year. I am so lucky to live in Scotland but you have to consider how much pressure our system can take. How much YOUR health system can take. 1 in 4. 1 in 10. And that is just diabetes. Every time you go out and don’t follow the rules. Every time you think ‘it won’t be me’ you are playing Russian Roulette with your life and the odds are narrowing in your favour.

SLEEP IS NOT MY FRIEND

diabetes wakes me up because hypo/hyper alarms

diabetes wakes me up because non-diabetics don’t need to pee this much

endometriosis wakes me up because sudden searing agony from your stomach, vulva, bottom is normal right?

anxiety wakes me up because what if I did x or y or z wrong? what if I DO x or y or z wrong?

depression wakes me up because sometimes my brain needs to remind me I’m not good enough and being asleep is not an excuse to avoid that.

autism wakes me up. the slightest light shift or noise. the feel of my duvet changed. i can’t cope. I’m awake now.

Going to bed and waking up when your alarm goes off. What is that? I’d like that.

dogs vs diabetes.

tri coloured lhasa apso dog with a few inches long coat lying flat out facing the camera on a peacock printed colourful duvet.

Been a couple of hours since I finally half fell through the door after another gruelling shift in retail land. Since I updated in general I have been promoted to supervisor at work. Well, it is a trial but at this point, I am pretty confident that I will not lose my spot as it were. I went from doing 12 hours a week to pretty much triple that. That was not the plan but people left and things needed done. So here I am. Diabetes wise it has been touch and go. The libre 2, when working, has been vital because I set my alarms higher at work for a hypo and ward them off before they make me unable to run my team. The problem is it is very faulty. At this point I recognise voices when I get through to abbott. But that is another post.

My heart is still full that when I came in, Nico (my 9 year old lhasa apso) wouldn’t leave me be. He did not sit and stare looking for my late to lick after I hate my heated up dinner. Instead, he followed me around the house until I was sitting talking to a family member and remained there, sniffed, licked. He was making sure that he was satisfied my blood sugars were high enough. I was not actually HYPO but I was sitting as low as I’m happy to be and while I would have sat on that number during the day…not for bed. And he just knows these things.

So he sat with me until he was content my mashed potatoes had started to kick in and change that 4.5 (81) to a 6.5 (108). Then he buggered off cause I’m not all that interesting when it comes down to it. But …dogs are amazing. And probably smarter than us. I need a meter attached to my arm to alarm while my brain sends signals to start waves of varying symptoms that add up to ‘warning: body imploding’ and Nico is just like….’ maw you smell funny. Eat’

We don’t deserve them.

30 days of diabetes.

I wrote this in a state of anger on twitter. I won’t lie about that. But given the feedback from the community, I know it hit home for too many,

How about we stop lying?

1: It sucks

2: It will prolong or STOP you getting to where you want to be.

3: Everything will be harder.

4: You will spend a fortune on things abled people don’t have to, EVEN IN THE UK

5: People judge you for being disabled or not disabled enough.

6: There is not going to be a cure any time soon.

7: These big diabetic companies do not have our best interests at heart

8: Adult care is BAD compared to children’s care.

9: It is harder to take a pump/cgm off an adult who got it as a child. So push for your kid to get if they will engage with it. (yes adults will struggle not to be bitter about this.

10: A lot of us are pissboiling mad about the whole affair and that is valid

11: All ‘diets’ are valid if made as a choice.

12: There is nothing wrong with eating carbs. You can achieve flatlines with carbs.

13: T1 is impacted by things such as emotion, weather, time of day, a rock that fell over in Pluto. Deal with it.

14: The NHS gatekeeps treatments

15: The gatekeeping is due to lack of funding.

16: MDI users that are deemed as ‘safe’ are not told about other treatments to avoid rising costs in UK

17: A generation of British diabetics are traumatised by the way Doctors treated us ‘DO THIS OR LOSE A LEG)

18: Those same people are now treated by the same Drs who never actually said sorry.

19: Hospital inpatient care is actually very dangerous for type one diabetes even when in with diabetic problems

20: We are 2-3Xs more likely to be depressed

21: We are more than twice as likely to develop an eating disorder

22: We call it a hypo but every hypo causes brain damage. It is just a question if we fully recover from each one or how much.

23: No two diabetics have the same symptoms/insulin/med needs

24: You are your own diabetes expert. HCPs can only ever advise. ‘That doesn’t happen with/to/for me’ is a whole and valid sentence.

25: You’re allowed a 2nd or 3rd opinion. Go through the whole clinic. Move clinic. Don’t settle.

26: T1 lowers life expectancy

27: Jobs will discriminate against us despite laws

28: The education system discriminates against us despite leaps and bounds of improvement

29. There is too much helicopter parenting happening

30. Oh and all the rules? More like guidelines and they change for every diabetic.

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.

t h i n k

You are our voice
@GretaThunberg
& we the children of #India
will echo your voice LOUD & CLEAR till it is heard...Striking
together on 20th September’19! pic.twitter.com/eo7ZxDZ0Ns

—
Fridays For Future India (@fridays_india) September
1, 2019

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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