diabetic preachers and nope nope nope

nope

 

I want to start with not all of any group I mention are like this.

It just happens that the ones from these groups I find insert themselves in my life without me asking are loud.

 

So my list of irks;

 

1: when other diabetics on twitter, diabetes.co.uk, facebook ect tell someone they should test X and Y time each day when they know (as said forums talk about it often) that not all diabetics have the resources to do so. It is hard to persuade the NHS to give a type two a meter and if they do it is with limited strips. So then a newbie comes and you tell them they have to test 2 hours before and 2 hours after? A rule not even all DSN try enforce on type ones?!

 

2: Where literally any question you ask is answered with ‘yeah but have you tried a low carb high fat diet’. No. No I have not. And Other issues;

  • my diabetes is brittle and reacts badly to decreases in carbs as noted by several endocrinologists, other professionals and myself ie not you
  • my nurse is asking me to eat MORE carbs as you, knowing nothing about me in full, harp at me to eat less.
  • fats impact health in many ways, including the other health reasons you know nothing about
  • no one has to follow one set of rules for type one or type two or any other form of diabetes. it has never been that way. ever.
  • telling someone who is newly diagnosed and evidently on a set of instructions from a professional to throw it all away and follow a random user name’s dietary advice is suspect to say the LEAST.
  • YOU are a specialist in YOUR diabetes which is DIFFERENT from EVERYONE ELSE.
  • My diabetes does not follow the rules. Stop the ‘what if’. Stop assuming I am lying. Have some respect.
  • Forums that allow LCHF advocates to comment continuously at users but when I interjected to suggest maybe there were other ways I was threatened with a ban.

3: How many comments you have made to any sort of forum does not make you an expert. Nor does the number of seminars you have been to or the number of badges you have collected. I will always be the expert on me, with my Doctor a close second. As is the case with any diabetic.

4: More respect, less…bullying to be honest.

 

5: Stop flat out telling people spikes after meals are bad. I, and many other diabetics have them and once our insulin is through our system we are in the ever changing arbitrary ‘targets’ . Many of us have taken every insulin, monitor every moment, log every second we take in oxygen and our bodies still spike. Adrenaline a lot of the time. In other people it is other things but you are NOT a bad diabetic who is not trying hard enough if your bg hits 14 after eating pasta.

 

 

6: Stop telling people to take insulin for things most do not? Everyone needs to work out for themselves what their body needs insulin for. A wee bit higher is safer than dropping horrendously low because you do NOT need insulin for that protein that forum said you did. Wow avatar wow.  Personally, if I eat baked beans by the bucket my bg stays the same. Eggs? Nothing. For others they may need to take something. Some find the fat in foods impact when the carbs hit. Some find it instant. Some find it later. Some find it depends on the fat content. But don’t go tell someone that something, usually a protein source, will need units of insulin. If they ask why their sugars are elevated after eating something sure point out ‘hey maybe you are one of the folks that needs a unit for them scrambled eggs’ but don’t, try be their nurse. Every diabetic is different. If my mum eats a slice of melon she needs half a unit. I could eat the whole damn thing and my libre would stay stable for hours. We are not machines.

 

7:  No again. WE are NOT machines.

the big black dog

Depression has really grabbed a hold of me and tried to kick my arse recently. While I have not had thoughts of suicide or hurting myself I have felt like the world would be better if I was not part of it.

 

I have drunk too much. Slept too much. Cried too much. Stopped doing my hobbies. Just sort of collapsed as a human being. This week it all came to a head and I went to the Doctor and finally got them to listen to me rather than just throw more medication or different medication at me. It causes me great anxiety to realise I have never heard the name of the Doctor who saw me and did me so well. I have an appointment with him in three weeks time but I deeply hope that he is not a locum or on a short term contract. I’d really like to see him stay at my surgery.

 

I do have another increase in medication but more importantly I have a reference to the mental health department of my local hospital.

 

I have been trying to get one of them for a couple of years. When I was referred previously it did me a world of good but it was focused solely on my anxiety and did not attempt to treat my depression also. The assumption seemed to be that if I was able to leave my house and do things then I would just not be depressed. But that made the assumption that my depression was a result of my anxiety which it was not.

 

Either way progress now seems to be happening. On the same day the doctor signed me off from work for two weeks. My rota changes constantly and even when you have it you can’t rely on it to say that way or a message to appear asking you to do more. It is overwhelming. I have been off for five days now and it has been rough. I have managed to not sleep as much. Make some attempts at creativity in nanowrimo and tidy a bit.

 

I still feel like the world is a horrendous place.

 

Added to my woes is that the increase in my meds has caused side effects. I know I just need to ride them out but  it is horrible. I am thirsty all the time. All. The. Time. This happened when I started my current med too. My sugars are running higher but I am using temp basals and corrections rather than touching my overall basals because I don’t want to crash into hypos when I do settle and I am back at work and suddenly cannot human when on a till and there is only me and the supervisor in the store.

 

My parents have been really supportive and my mum took me out on Saturday and we did a little shopping before I paid for us to see the Fantastic Beasts: The Crimes of Grindelwald movie. Sometimes I feel like things are starting to look up and others I don’t feel much at all.

 

My doctor says people react to things in different ways. I have just reacted to my health staggering from one crisis to the next by collapsing mentally rather than physically.  It was nice to hear that and be validated from it.

 

We shall see where things go.

update on the state of the pup

niiico

 

The state of the pup. So, it is just over three months since Nico had his stroke. I never did confirm on here what happened to him but yes. My six year old dog had a freak stroke. The tiniest fragment of bone chipped off his spine and caused a blood clot. The vet has no idea what caused that to happen. It could have been when a chair fell and he started or it could have been when he rolled over a certain way or walked down a step outside. He could have stretched his body and something went ping. No idea. The odds of the chip ever causing anything of note at all were tiny yet they did. In the end, it does not really matter what caused his stroke if it is not something I can alter in his life to prevent a second one.

 

What matters is him getting better.

 

It was around 11am the following morning when I got the phone call from the animal hospital. It had been excruciating waiting to hear and I was encouraged to phone in but I assumed that the staff would be busy tending to patients and if I needed to know something right away I’d be contacted. Plus, I feared being left in limbo of ‘he’s had a good night/ bad night but we are waiting on X Vet to make their rounds’.  I mean, I assume vets make rounds? Walk around the room of cages? I have no idea how an animal hospital works and I didn’t look it up at the time for fear of making myself even more upset.  Anyway, I eventually got the call and was told that Nico had a good night.

 

That was a relief. Especially given mum and I had left with mum talking of where we would bury Nico if the worst happened and me trying not to explode in the passenger seat of the car that now felt huge and empty without my son on my lap.

 

I had been told the previous night that if Nico remained stable over the next few hours any operation he needed would be on a flexible time scale and emergency treatments may go on in front of him. I was perfectly fine with that. Vets don’t send animals to the hospital lightly and if someone had to jump my son in the queue it was for a good reason. As a result of this I was surprised to hear that Nico had already had his MRI.  This confirmed his spine was intact (apart from that little nuisance fragment) and he did not require surgery. This removed the biggest dangers from his path to recovery. Infection risks are high on little dogs who need spinal surgery. Also, back surgery is dangerous no matter who or what you are performing them on. Nico could walk in with a leg that sort of worked and one not working and come out paralysed completely. It was a huge relief to know that wasn’t going to be needed. It was also a huge financial relief. The quote I was originally given was for over four thousand pounds and my parents had to  give half of that up front  for Nico to be seen at all. ( My part time ass didn’t have that sort of ccard credit) To know I ‘only’ had to pay that half was a good feeling. The letter in the mail eight weeks later reducing the bill by another five hundred was amazing too. Screw pre-existing health conditions that prevent Nico being insured. He just has eczema and doesn’t even need treatment for it anymore dammed it all.

 

 

 

But yes, it confirmed Nico had a stroke and he needed time, painkillers and therapy. There were mentions of hydro therapy at the hospital or vet based therapy appointments but frankly Nico progressed quickly and did not require anything beyond the work sheets we still do daily. My bank account was happy at that.

 

It also came with the news that Nico was not to use his leg for over a week and should use a sling. A long towel would do or I could purchase one online. What a saga that became. When Nico first came home, the evening after that 11am phone call, he was groggy. He’d been put under for the MRI cause dogs don’t tend to do well with the whole ‘lie still while we roll you into this weird machine making weird noises and odd lights’.   He cried the whole way home which was a very different car ride from the 40 minutes he lay quiet and sad in my lap on the way home. As I petted, hugged, fed and cajoled him I tried to tell himself this was progress.

 

He, being bud, felt he was A-okay thank you very much. He wanted to RUN outside NOW thank you. No. We need a towel and you can’t use your back legs. I thought this might encourage him to walk slowly around the garden and pee accordingly. No, he figures he can run anyway and my asthmatic, bad back arse can just keep up.

 

That was fun.

 

It also killed my back so I ordered a sling. Only to find that bud is an awkward size. He’s bigger than most small dogs as he is a beast of a lhasa apso. He’s not fat. He’s just tall. And long. But not long enough to fit the next size sling so to get all frank here, his shoulders didn’t fit the small sling and his penis didn’t reach the slot on the bigger one. Hilarity ensued. I am sure neighbours loved hearing me squawk at my parents ‘can you see his tinkle?!’.  He peed on the sling lots. He also peed on me a few times. He wet the bed several times because he didn’t know how to say he needed the toilet without going to the door and he wasn’t capable of doing that so he’d just panic and pee where he was which was often on my bed where he was away from the other pups in the house.

 

It was advised it was best for them all for them to see Nico but not interact with him until Nico could…well fight them if they fell out basically. He was not well enough to go into the bath so he needed cleaned with wet cloths which hurt his still aching body and made him lash out. But I couldn’t leave him covered in his own pee either. It was not a fun time but I was just glad he was home and was going to survive and had a high chance of full recovery.

 

And he did start to recover. Slowly the baby gate at my room came down and the other dogs were allowed to interact with him. He didn’t need to sleep in a crate. His hated sling was cast aside and he could toilet outside on a lead. Fur grew over the bald patch where he had been injected with painkillers and anaesthesia. He stopped favouring that paw which had been in pain from the drips. He came to jump onto the couch again. He came to jump onto the bed again, though he prefers to sit at the side and bark until maw here reaches over and pulls him up.

 

He’s better.

 

But he’s not right.

 

He still favours his back leg. A signal doesn’t quite pass through right to tell him to place his paw flat. When he wakes up or his tired he can’t quite work out how to move it at all. It is doubtful now that he will regain full use of his leg. I accept that but my parents have found it harder. The thing is, Nico is happy. He knows his limits. I suspect he also knows he doesn’t need to put in effort if he doesn’t want to, hence the bed shenanigans.

 

The thing is; I was sure I had lost him. Or if I had the luck to keep him I would be googling the internet for some sort of puppy wheelchair like I have seen many dogs adapt to. For others pity him I am just so thankful he has recovered to the point that he has. His personality is the same. He’s still by bud. I am still scared to let his groomer give him a haircut and I don’t know if I want to be there or not but other than that we are back to some sort of normal. Just, fluffier than normal. And I’ve paid the first instalment back to the ‘bank of mummy and daddy’, something I could not be more grateful for.

a plot on weight and an ending of woe

blog

*Most of this is word for word from a twitter babble from this morning but I have added more information as it came to me. You can follow my twitter for diabetes and lots of other garbage @Endo_Gremlin

 

Something that has been on my mind a while just got pointed out to me again. Talking about weight in front of children. It should not happen. It causes trauma. That is proven. It absolutely traumatised me. As a child with diabetes I was subjected to being weighed at every clinic appointment. Technically I still am but I refuse to be weighed given the trauma it causes me and how it triggers panic attacks and my body dysmorphia.

 

As a child my weight was taken in a side corridor surrounded my green walls and stick on cartoon characters and then stated to me in a clinic room and put on a plotted graph. Children did not get the privacy and dignity afforded to adults at clinic. Given weight is a huge subject of bullying in children this is appalling. I hope it has changed. I don’t know any kids with diabetes or parents of kids with diabetes to check though. Anyway, back to my horrors. This graph had a line on it that showed where my weight was expected to be. For my age. It didn’t account for my height as far as I remember. So from a young age (6) it was constantly drilled into me that I had either hit or missed weight targets. I was ok, too thin or fat. As a child. How is that acceptable?

 

I still have nightmares of the white paper within a green folder being slid across the table with the graph on it and the pen hovering over where my weight was. Too low. Too high. Pen tips tapping the graph. Hums and awws while looking at the graph. Developing a fear of a Doctor so bad I refused to be seen by her and would wait an extra hour to see another.  I had ketoacidosis as a child and was clearly deeply mentally disturbed by my diabetes but where did my Doctor get to put that star on the graph? What was my HBA1C? Could I be tucked into the ‘good’ or ‘bad’ patient folder. That is what it felt like.

 

I was told to gain weight but given the choice of whether to see a dietician which looking back was a bad idea. I feel a dietician should have been present when they started the weight discussion if they had it at all. Perhaps then I would have had a healthier relationship with food. Instead I just ate crap and then went above the line and wondered why they were now so angry with me. I was now above the line? I did what they wanted? I avoided all the terrible complications they said would happen if I was an underweight diabetic? All confronting me with my weight did was create paranoia. I went against my mum and ate when I shouldn’t have because I feared what would happen if I was underweight. I mean I took the insulin and it didn’t impact my HBA1C so…what did they want from me? Only to find the stigma and anger of my Doctors was worse when I was then deemed ‘overweight’. The thing is; I was only ever a size 12 for years. I had a big heavy chest. I’ve weighed them. I carry a stone on my tatas alone. But the BMI!

I now have body dysmorphia. I AM big now. I’m fat. I know and accept this. My diabetes is stable like this. But sometimes I see a far smaller lady in the mirror and sometimes I see a far larger person. I feel sick when I see mirrors.

I have disordered eating. I have a terrible relationship with food. I cannot take on a diet without becoming obsessed and anxious and breaking down. And it all started with showing a child a graph about their weight. Something I should never have seen. Show the parent. Not a child. Never a child.

relaxing while anxious

20180605_003319

 

I am an anxious critter. Two disorders and a phobia. Lots of therapy and tablets each night. But alone that is not enough.

 

I have tried turning everything off within a set time period before going to bed. It doesn’t work. I’ve tried breathing exercises. It doesn’t work. I’e tried whale music…no. It took me a while but what I found DOES work is…AGE OF games. Mostly I play age of empires II or age of mythology because on Steam you get stickers for achieving various things. Play as the god Odin for 10 times and you get a stamp. Play a certain scenario for ten times…stamp.

 

The thing is…I completed these games with my Father years ago. The hard scenario parts. I know the games in and out. I know how to win. So a scenario of any sort now is not stressful but simply fun.

 

So most nights I wrap up my evening with a quick game of Age of Empires/Mythology. The goal of earning all the stamps on Steam is great. I have to say though I hate that I will never earn them all because I do NOT do online multiplayer games. That sends my anxiety UP. I just faff on my own. So it saddens me to know that I will never do it all.

 

I wish there was a setting for personal play or something.

 

But yes…video games get a bad name but they do have a good purpose. As with anything in life it is about moderation. It is about knowing your limits and the limits of those around you.

 

 

wordless wednesdays

051b40dcf4bd63436963f68c7f63f39117f6d6-wm

 

Ok so that is not wordless but. My diabetes hates this weather. The humidity is causing so many problems. I am exhausted. I don’t enjoy the weather; I fear what it will do to me next. I’ve had times when I have stopped insulin altogether and had none on board and still gone hypo.

 

And my job is physical and the aircon is not strong enough for this bullshit to be honest.

 

My thyroid could kick in at any moment and make my body feel like its colder than it really is. No really. Please?

imagine sam vs diabetes for real.

me: hey betes could you explain wh-

betes: I DO WHAT I WAAAAAAAAANT

me: ok. cool. that makes sense. I’ll just libre more and te-

betes: THAT IS RIGHT. RAWAAAWR.

me: whelp.

me: you’re rude.

betes: i’m rude? i came to kill you 20 years ago and yet HERE YOU ARE, still FUCKING BREATHING.

me:…. betes: yeah. so shut it.

me: lulz. waves new tech.

betes…..’you’re a dick’.