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.

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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.

a whole box of set fail

I wish that was a joke. By around mid-afternoon yesterday it became clear that it was no joke. Each set coming out of one box was failing one after the other and I was not making any mistakes on insert. I had just stared with suspicion at my fourth attempt with an off feeling, only to pull it free and yep…that dreaded folded over plastic tube feeling.  I had got to the point where my levels were stable, held together by a novorapid injection every two hours and sheer will but  I knew I was thinking steady and something did not add up.

 

I sat at my desk and hacked apart a set I had not attempted to use and found it…wanting.  Then I did the same to another. I made sure I was no where near social media while I did so as the result would not have been pretty. Basically the box is a dud. Each mechanism is tilted and has a bit of plastic in the wrong place on each set meaning each is doomed to fold into my skin on insert. It will look ok but it will take hours and pools of insulin before the levels climb or enough dampness appears to show a problem. Unless you are on set three and get suspicious of course.

 

So I have been in touch and the whole lot, or what I have left of it, is being sent back for assessment. I am furious. A whole box of fail. The dangers of mass production lines when lives are on the line.

 

But this is in times of Brexit. This is when my last order appeared with warnings of shortages anyway and other diabetics getting bit parts and sending hopeful requests across twitter for help. This is when diabetics in the United States of America are dying in their droves over insulin prices. It feels gut churning to have to toss a box of supplies, even though I know it is because they are broken and won’t work. How can such mistakes happen in such times. How many diabetics around the world have the luxury of sitting on three months of supplies at a time so to lose a box is simply to need to order earlier? How many have time to wait whether they pay out of hand or not? How many mistakes are happening in diabetes care?

 

I keep saying it but technology is over good if it works whether that is the card reader on my till or the insulin pumps. I thought I had said goodbye to my pens years ago but the truth is they are a haunting companion no matter how long ago you thought pump meant progress.

 

 

adventures in the hospital world

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keyboard showing two keys in red labelled panic and delete 

 

I went to see my nurse today. She’s amazing. She is not listed as a DSN but she is my DSN. Dietitian some of the time and it still says that on her uniform but she spends most of her time tangled in pump wires and probably more than she likes trying to persuade me to do a basal test overnight. My control has slipped recently as my mental health has deteriorated. I have not been testing as much and if I have had the libre on I have had a bad habit of noting it and then not telling the pump, just popping in my carbs and upping or downing the insulin dose accordingly. I hold my hands up. It has been scary to get back into things. I am terrified of the number I will see each time I test, knowing it must go in. It must be recorded. The doctors are going to see it. My HBAC1 is going to be higher. I am going to lose a fucking foot. No.

 

No.

 

No.

 

I don’t know any of that. I don’t have enough tests to know what my average is. It doesn’t matter if it is higher as long as I get it sorted. I have definitely not been of course long enough to lose a foot. But when you think that the mental deterioration is anxiety and anxiety and my diabetes are horrid bedfellows and have been for twenty years….it adds up. It just happened that while one illness was diagnosed, no one noticed the other.  I was seen as shy and a bit fidgety. Now looking back Doctors concede I probably should have had some anti-anxiety meds with my insulartard and a psychologist with my DSN. But this is now.

 

E worked with me today. She said we would start slow so as not to panic me. Start getting the results into the machine and not to panic if I didn’t feel ready to react to them. It was not a failure if I wasn’t in target by the next test. The important thing was I tested again and put the results in again. Since my depression is terrible I struggle to keep up with days and make myself eat. This has led to reservoirs lasting longer and cannulas being left in longer than I should. So the second goal is to note in my bullet journal each day I should change them, cut the insulin I put in the reservoirs by a third to start with and stop feeling guilty if I have to throw away reservoirs with insulin in them.

 

I confessed my Brexit fears and my woes of my diabetic peers across the pond unable to access insulin. How can I justify just throwing 60 or even 90 units away? But we talked about it and she said the best justice I could do them is to use the pump to its best while I can. Later will be later. But we can lower how much I put in at a time to help with that.

 

She encouraged me to eat more. She also assured me that my weight was not something she had in her targets at all. She admitted there were a number of reasons that my weight could have increased in the previous 18 months and food intake was only one of many. I felt so relieved and supported to hear that, and from a dietician too. So much on twitter and the diabetes websites causes doubts. LCHF. Lose weight. Ect. But then more articles are appearing to suggest it might not be the healthiest option for all of us. There are other ways. And people are not all the same anyway.  I just felt so supported. I could have cried and very nearly did.

 

So my cannula is new. My reservoir is new but only partly filled and my libre is on. Even if I only trust if part of the time. Which is another post.

 

But really, my feeling from today and I’ll write it up while I feel positive and such is…I don’t give myself enough credit for living with this for twenty years. The diabetes and the anxiety and depression that were always hovering too. Neither does anyone else.

Andy Murray is a hero of mine; but come on main stream media he’s retiring not dead.

Andy Murray is a hero of mine.

andy-murray

Not because of what he did; but because of how I felt when he did it. Other people’s ‘what’s and ‘it’s will be win Wimbledon, the US Open or one of those gold medals at the Olympics and don’t get me wrong those were magnificent and I felt magnificent when he did those things. But that is not what I refer to. I just mean when he got on a court with a ‘bat an ba’ as we say in Scotland and played tennis and there happened to be a camera which meant I got to witness it. I first started Andy when…well when he first appeared really. A shinny wee shitebag that did not look like he would ever grow into his jaw line. This was before I watched tennis every week. This was before I could tell you what A’s match against D would mean for L’s ranking.

 

I just watched Andy.

 

The rest followed.

 

A lot of articles have come out since the press conference where he tearfully said that he aims to retire at Wimbledon but honestly doesn’t see himself getting there. I don’t see himself getting there. I see him losing early in Australia and then Wimbledon giving him a wildcard so he can go out where he wants and they can give him a send off.

 

The thing with the articles is…a  lot of them seem like obituaries and twitter has called that out. He’s not dead, guys. He is just bit going to do the tennis thing anymore. He’s just over thirty and has a lovely home with a lovely wife and animals and two small daughters. He owns various business shaped things and I do not think he will struggle for work or to pay his electricity bill.

 

I mean, if you want to give a toll of death it might be for men’s tennis in the UK because as good as some have been there seems to be no Andy mark II in the wings. No matter how dull and ‘nearly’ British men’s tennis was for years there was always the next ‘nearly’ to come along for a couple of decades. Someone who would be in the top 20 and win the odd tournament and people from other countries might even know the name of. It all seems far more uncertain now.   Kyle Edmund is good but there is something about him that just does not convince me. I would love to be proven incorrect though.

 

Andy will be fine though and I do not doubt that every time some fool tries to do something sexist in tennis or sport in general Andy will hop on twitter to tell them that they are a first class twat.  Still, it is a lot for me to think that he just won’t be around anymore roaring at people and hitting odd shots at even odder moments.

 

For me tennis has always been a way to release my emotions.  These are only personal experiences and I don’t claim that a Eurosports package is the answer to the growing Mental Health Crisis. Would be nice if it was though. Virgin and Sky ect update your package quicker than the NHS sends you a referral to a professional that is for sure.

 

I find it hard to remain closed off and lifeless when a tennis rally is at 20 shots and it is not because someone can’t do something but because each person is doing so much. So, not your Isner – Mahut rally sort but the Nadal – Djokovis type for those who get what I am talking about. And Andy was always a frustrating player. I didn’t just watch him at Wimbledon and I didn’t just watch him when his ranking was heading towards top ten. I watched as he slipped back again to s17 and stood bewildered on an outside clay-court in Europe and roared to himself  what became, for me, his token ‘What are you doing man?!’ and I thought….indeed. What ARE you doing? Odd chap aren’t you. Not defensive. Not quite offensive. Hysterical in interviews but no one GETS it because Scottish humour is so dry.

 

When I was signed off from university and life and on benefits and waiting on my pump thinking ‘I may never go back to work or school or anywhere but this room’ I still had a reason to know what time it was and what day it was. Where was Andy playing? And when? My silly fool. Basically everything people hated him for I loved. He didn’t shout at opponents and he never lashed out at officials. He just had a go at himself. I guess all of that made him seem more relatable. More human maybe when Nadal and Federer were like immortals among men.

 

People didn’t believe me when I said that he was my favourite player. They called him ‘a headcase’. But I guess in my mind I was going ‘yeah well, first of all rude but, me too. So?’

 

When he won that first Major in New York my dad stated before bed that ‘He’ll shit the bed. He’s no got the mentality’ and my mum dared not watch. When the first match points appeared I charged through in the dead of night to say ‘he’s going match point! you have to come, you have to!’ I mean, it was the closest any Scottish sports person had got to anything major since our Curling team won at the Olympics. If he lost at least she could say she had seen the last moments. But he didn’t lose and my shriek woke the dog next door. I didn’t have one back then. My dad stormed in to watch and we were all teary eyed when he got the trophy.

 

Andy is a symbol in Scotland. He is more than a tennis player but we love him cause he just carries himself in bewilderment cause…’who  me? I just play tennis.’ And doing that made me happy. It is going to suck that he isn’t anymore but then SkySports is not getting as many tournaments these days anyway so maybe it doesn’t matter either way.

 

But he’s not dead. We don’t need to write obituaries. Just talk about his career. His tennis. We don’t need to pack the man into a box and forget about him. ( I am half convinced he would like that though. ) Posh newspapers can even get excited because Andy asked not be referred to as ‘Sir’ while he was still playing so I guess when he does play his last match whether next week or in July they can have at it.

 

Reading this back I guess in some ways I just wrote the sort of article that has been irritating me. Oh well. At least it will sit on my blogs and not bother Andy in the media storm. Plus, it is relevant to my blog. I used to get a lot of odd looks when I said watching sports helped my depression and anxiety. most people DO sports for that. But for health reasons I can’t play tennis anyway and I certainly won’t be getting in a formula one car anytime soon. I can’t stand the idea of being behind the wheel of a small fiat. But now more of my friends roll their eyes and laugh in the best way. @kitpatlecter often rolls her eyes and things and goes ‘look, there is your nonsense’ in the best way when we are together in person. Personally, I think she secretly loved my rants when wifi would kick in when in Australia and I’d see the latest Real Madrid result and go into rage mode.

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If you are trying to work out how long each player has been on court before they got involved in a five hour slug match to see who will be fatigued….if you are trying to work out how many tenths of a second your man needs to make per lap to get the next place on the points positions….if you are wondering how in the name of whatever deity you know your million dollar team just lost to THEM then…you’re not focussing on whatever nonsense your brain insists you need to break out about RIGHT NOW.

 

So sports can be helpful. Andy Murray was really helpful to me. Now I need to find a new person to spend my weeks on. Thank for that.

 

Twat.

[i am totally cool] no really, let’s talk about the doctor’s surgery and all that jazz

I wrote this in the local costa on my notebook with a nice chicken wrap to the right of it and my smartphone to the left. I was in a Harry Potter jumper and it was 9.30am when I finished. I would like to think I looked very hipster blogger. Given my hair needs washed (Scottish language for I need to wash my hair but I like to throw Scottish phrases in and explain them rather than speak in Proper English Sir) I probably looked more uni student in a deadline rut but details.

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The trip to costa was important because for the first time in a couple of months I was by myself at such an establishment. I had to order my own drink and fluster with change and pick a seat and all sorts of things that set my heart racing when my anxiety wrestles me for control. Things that if you have never been in the grips of full on anxiety disorders seem ridiculous things to get anxious about.  They are ridiculous things to get anxious about and when the anxiety attack is over and I have peeled myself off the ceiling that is what makes me angry about it all.  I think;

 

“Really self? Really? It is a seat! Fucking pick one and put your arse in it. You utter tit.”

 

But reality ect.

 

Anyway, I did not want to write about anxiety today. I wanted to write about how cool I thought I looked writing in costa like it is still 2012 to start off my piece.  And other things.

 

Oh yes.

 

People going to the Doctor for viral things.  Can we stop doing this in 2019?

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It is a huge burden on the National  Health Service (Which Scotland is out performing its rest of UK counterparts on by the way! All those ‘disaster in waiting times’ headlines on sky news have no relevance to us. They should say that! But that is another post and another rant.)  and leads to Doctors handing out antibiotics they shouldn’t which will result in like, superbugs nothing can stop. There goes that anxiety catastrophising again except that is what Doctors and other scientists are actually saying. We are already seeing it with ‘superbugs’ like MRSA. (On that note I was shocked and slightly afraid that apparently in the US they don’t just say each letter they sound it out? Like Mmmmrsaaa. Thank you WWE Dean Ambrose Chronicle for that interesting yet horrifying info)

 

Yes, Doctors should stop handing them out but I know that is hard when you are already twenty minutes behind at least and someone is harassing you and refusing to, sorry, fuck off. I am convinced that a good portion of the time people get  penicillin it is to get rid of them, and that their ‘it is working now’ is that the virus is by then on day five and their immune system is giving the old heave ho.

 

People do not need to go running to the doctor every time their throat hurts or they get a blocked nose. My family was shocked that I didn’t go to the Doctor this past week for whatever I had. Because there is no point. Something is making my throat itchy and my nose run like a tap and my head feels heavy but there is nothing to suggest bacteria is involved so sleep, drink and suffer until it goes. And it mostly has.

 

I hate the idea that ‘oh but you’re diabetic? Come in then.’ Am I then getting a prescription to cover their arse or do I really need it? Cause I would rather be told ‘nah we were right, it is just X’ than take an antibiotic I don’t need and then down the line find I am immune to them when I need them and my actual immune system is shit. Because wow my immune system is shit.

 

Also, if you get prescribed antibiotics, rightly or wrongly, TAKE THEM ALL. 2019 and we are having to remind people that you could relapse if you don’t take them all, even if you feel better and that not taking them all impacts your resistance to them later. Added to that   I am still gobsmacked and outraged that NHS resources are going to printing posters saying ‘antibiotics won’t help your cold’.

 

 

I support the receptionists being able to ask questions. I know this is highly unpopular with it seems like everyone but  these people sign confidentiality agreements. They are professionals. They are not going to tell their mate down the pub on Friday that you might have a mole on your left hip, okay?  Too many appointments are needlessly taken up, especially when so many can be handled by other health professionals. Opticians can handle eye care and write prescriptions. Pharmacists can handle a whole host of ailments and have powers to prescribe some things or fast tract a signature from a Doctor.  Hopefully this will stop a lot of colds and viral bugs getting to the surgery and taking up time. And spreading it to others. The pharmacists especially can help people.

 

Of course there are times when you cannot tell or when something won’t shift or is especially bad and you should get checked. And I don’t begrudge parents/caretakers getting young kids checked, even when it is fairly obvious it is just a nasty cold,  but there has to be sense overall in how we use the Health Service.

 

 

I have a relative who is notorious for getting the Doctor to prescribe her a cough bottle. Now, there is a lower income scheme at the pharmacy for such things. There is also shops that sell the same stuff at a pound. There is also the fact that she is fully capable of buying it herself on the occasion that she needs it. It all chips away. There is always the ‘I paid in’ mentality but I don’t think people really understand what the cost of each treatment is. I, a cart with the wheels long gone, will never pay in what I will take out of the NHS. By a long way. But when you look at what part of your tax goes to the health service and weigh it up to each time you see any sort of Health Care Professional whether it be a mental health professional or to check you didn’t break that shin at football….it adds up. Many others will never think of themselves as costing money but they do. We all do. We all have to be careful.

 

We all have to protect our NHS.

 

It is one of the best things Scotland, and the United Kingdom, has.

 

It was made part of ‘our’ Olympic welcome to the world. Everyone compares themselves to it. Let us make sure there will always be something for them to compare it to by using it wisely.

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oh no here we go

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Soooo, I got a new medication. Duloxetine. This was after several red boxes appeared on the screen in front of my puzzled new Doctor. (new but I like him. He listens and treats me like a person). My migraine medication is apparently a ratbag so we have to work around that. This kind of led to him sending me away for several hours on Christmas Eve and me fearing I would end up with nothing. But I got my new med. And I started on Christmas Eve. Had three panic attacks on Christmas Day. Hated everything.

 

But.

 

I think it might be settling in? Obviously this is only a week. Not an easy week either.

 

Drymouth.

Weird dreams. WEIRD. 

 

I never remembered my dreams before anti-depressants.  I remember having a nightmare when I was four or five and then other than that I just slept. I would have weird images in my brain if I was hypo and needed to wake up but never dreams. So it was adjustment to dream and nightmare on pills. Each change in medication seems to change how I dream and when and why.

 

I feel more….stable. I still get anxious and I still get super depressed but the rest of the time I just am rather than feeling like I am going to fall either way at any moment. That is good. I feel less anxious but still hugely anxious and I don’t know if that is placebo to be honest.

 

Me with no anti-depressants was not pretty.

 

It reminded me that while they no longer worked in full and for me they were doing something.

 

Does that even make sense?

 

I don’t know.

 

I so often wonder if my content here even makes sense or is worthy of its platform.

 

But then I figure why should I not? Why should my rambles matter any less when they seem no more or no less than the rambles that have thousands of followers. We cannot all be chosen to review tech ect.

 

Two weeks ago getting out of bed seemed a ridiculous task. Eating was a chore. I had to set myself goals to eat breakfast and lunch before dinner. That matters with my diabetes. My diabetes does not react well without meals and carbs. As agreed by me and Doctors and nurses and the rest.

 

That is another thing. 2019 I should stop adding on those notes. I don’t need to justify myself to other diabetics. It is not my job to educate their ignorance in how diabetes can impact others. In the 90s and early 00s there were diets that everyone pushed to be the ‘answer’. They didn’t work for everyone. They got pushed aside. Just saying.

 

The state I am in now, one week in to my new meds is glad that my side effects are manageable. Hopeful things will improve. Hopeful Dr will approve an increase of dosage next week and sign another sick note. The idea of going back to work right now increases my heart rate. My wearable confirms.  I want to hide in the drawer under my bed.

 

I hope my anxiety improves.

 

I hope I can phone people. I hope I can answer calls. I hope I can deal with a busy aisle in a supermarket again.

 

I hope I can start to find me again. The answer is not in the pills. But the start of the answer might be.

 

Maybe.

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.