Black Dog Days – I still have depression

It’s been 13 months since my last post. When I realised this, I initially thought “That’s because I’ve been feeling so crap.” That’s just not true though. I have been feeling crap, but not for 13 months. Not as bad as I currently do anyway.  If I’m totally honest, I don’t think my depression and anxiety ever really went away, but life’s been good and I’ve been symptom free.  I don’t think they ever will go away. This sounds like I’ve given up. Given up on ever being well again. I haven’t. I’m just starting to accept that I’ll always have to live with my mental illness.  Sometimes it’ll be well controlled and sometimes it won’t.

My mobility has been affected by my diabetes. Chieroarthropathy, foot pain, shoulder pain and pins and needles in my left hand after a failed carpal tunnel syndrome op. I used to run. I loved to run. I was never fantastic or about to run an ultr-marathon, but it was good for me.  It kept my weight under control. It made me sensitive to insulin. It was time on my own with my thoughts. It was my way of pounding the shit out of things that were stressing me or getting me down. Then there were the endorphins, oh those lovely endorphins. This has been affecting my mood for the last 3 or 4 years.

I found myself in a perfect storm of chronic pain, drugs for my physical symptoms making me feel dopey and thick headed and their interactions with my anti-depressant meds making me sleep for up to 20 hours a day. Something slipped.  I went from I’m ok. I can do this. To thinking I can’t do this anymore. I’m just not physically capable of doing everything I need to do in a day. I became more and more anxious about work. About being dad. About my relationship. About my ‘worsening’ health. About the future. About everything ad infinitum. Enter big black worst case scenarios around every corner.

This was the worst I’ve felt since 2003. I was having chest pain in the car on my way to work. I felt hopeless and started having suicidal thoughts. I’ve been there before and didn’t want to go back. I spoke to my partner about how bad I was feeling and made an appointment for my GP. I should have gone months before.  A quick review of my meds and a reassuringly thorough assessment of my symptoms and I left with new anti-depressants and a referral to the Primary Care Mental Health Team.

It’s been nearly 3 months since I first saw my GP and I’m slowly getting better.  Starting the new meds was tough, as were subsequent increases in dose. I couldn’t face anyone and answering my phone was a no-no. Thankfully I can see recovery coming.

Things that have helped:

  • Getting away. We had booked our holiday before this all came to a head, and it was great to just go away and not think about anything more than what we were having for lunch and where we would go the next day.
  • Anti-depressants. This should probably have been at the top of the list. I know they’re not for everyone but they definitely helped. Initially they made me feel flat. Flat isn’t great, but its way better than anxious, hopeless and crying at the drop of a hat.
  • Walking. I know some folk don’t agree about physical activity helping your mental health but I found it useful. Big walks and little ones. I’ve bagged a couple of Munro’s and a few sub 3,000 feet hills. The little ones have been mostly around where we live and have just been at times that I’ve felt agitated or just needed something to distract me.
  • Pokemon Go. On days when I really didn’t feel capable of doing anything with The Boy Pokemon Go was a lifesaver. Either walking or on our bikes if there were eggs to hatch. It was great to have something we could do together that didn’t need any prep or have any stress attached to it.
  • My bike.
  • Stop, breathe & think. My CPN recommended this fantastic little app to me. It asks you to input how you’re feeling when you open it up and then suggests guided meditations based on how you are at the time. Most of the meditations it has suggested for me are between 5 and 10 minutes. I’ve found it really helpful and a really quick way to calm myself down if I’m starting to feel anxious or agitated.
  • Cheer Up Love by Susan Calman. I bought this on Audiobook and there are some good tips and tricks in it.  It’s also entertaining.  After listening to it, I’ve stopped apologising to my partner when I’m having a meltdown and now thank him instead when he helps me out.
  • Social media (Twitter). Facebook has been unhelpful in equal measure and I’m seriously thinking of divorce. The #GBDOC has been good for sharing as there are a few of us who know that Diabetes and Depression often go hand in hand.Like all social media, it can have it’s moments, but they’re generally a good bunch and if someone has been out of order or inadvertently upset things they generally sort themselves out quickly.

I got a card from the guys at work the other day which said no matter how big the storm gets, the sun always comes out.  I’m glad to say it’s still a bit cloudy, but the storms on it’s way out.

If you are having suicidal thoughts, or thoughts of harming yourself, please speak to your GP or CPN. Tell a friend or relative how you are feeling.

Contact the Samaritans, free from any phone, on 116 123 (UK & ROI)

In Scotland you can contact NHS24 on 111 or Breathing Space on 0800 83 85 87

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Return of the absentee blogger (again). Elsie and I, day #548

It’s been ages since I took some time out to write on here.  It’s been a busy year so far, and to be honest its been good, after a shaky start.

I had my left Carpal Tunnel and trigger finger (middle) operated on a few weeks before Christmas 2014 and it was a bit of a disaster.  I ended up back in hospital with infection and had to have washout of my wounds and IV antibiotics, with another two trips to theatre and General Anaesthetics over the Christmas holiday.

I wasn’t a happy Boylie.  On top of all of this, my joints were pretty stiff and sore and I was getting depressed and frustrated with the lack of progress, or any sort of diagnosis. Thankfully my hands are better, with a combination of meds, lots of physio and steroid injectionns. This has made a huge difference to my mood – the pain and constant pins and needles I was experiencing were really getting me down.

6 months of duloxetine (prescribed for the pins and needles) also helped my mood.  I know it’s not for everyone, and I had quie a few of the unpleasant side effects.  (Dizzines, insomnia, difficulty passing urine). It also made me feel pretty flat for the first few months.  I’m not sure if ths was a bad thing though.  It certainly helped with the feelings of hopelessness I was getting at the start of the year.

The pain and the pns and needles were driving me round the bend.  I couldn’t sleep and I felt like noone had any answers to my questions.  I was beginning to imagine a future of increasing immobility and pain. It looked pretty bleak to me. Until mid 2014, I was regularly running 10k’s. Worst of all, the hand pain was making it impossible to play the piano. I’m no concert pianist, but I can play a tune or two, and I really missed being able to play.

I’m not 100% sure when I started to feel better. I’m also not 100% sure exactly what made the biggest difference.  Looking back on it, I was clearly clinically depressed. I never told my GP how bad I was feeling at the time and I know this was wrong. I did know though, that I could get a prescription for Duloxetine because the pns and needles were so bad. At the time I didn’t want to talk about my feelings to my GP, but I knew I needed some sort of treatment.  I’d had duloxetine before (when I had surgery on my right hand and wrist) and I responded well to it.

This coincided with a diagnosis of Diabetic Cheiroarthropathy and limited joint mobility and some slightly frustrating physiotherapy.  In the end I got some very good advice from the diabetes team about keeping mobile and reducing the pain in my joints and feet.

I’ve accepted that I’ll probably never run another road race, but I also realise that I need to keep moving.  I had gotten into a cylce of doing less because I was sore, which was in turn making me more stiff and sore.

I’ve swapped running for cycling – nothing too dramatic, just nice easy rides along the canal towpath or the local disused railway path, with the occasional ride to and from work.  I’m slowly increasing my distances and the sweet spot where the endorphins kick in (that was so easy to achieve when running) is just around the corner. I’m graduallyy losing weight too. This can only be good and will certainly help the sore joints.

Numbers have been pretty good (considering my diet) and I’m dabbling with the Freestyle Libre again. I can’t afford to use it constantly, but every now and then is great for adjusting basal rates and I’ll hopefully get that elusive HbA1c of <7%. I’m hovering between 7.1% and 7.3%. The exercise is helping with insulin sensitivity. If I could just stop eating cake. Then again, 7.1% is acceptable.

Black Dog Days. Elsie and I, day #269

Today has been one of those days. One of those days I fear. On the face of it, it was just a little bit disorganised, tired, grumpy and clumsy. Stuff had been going wrong all week and I can usually tell how my mental health is by how well I cope with the little surprises that life has a habit of throwing at you.

We had a near miss earlier in the week with the power supply unit for our router. Burned out and smoldering, I had to turn off the power and quickly get it out of the house wrapped in an oven glove. I’m one of these folk who goes around switching things off obsessively when they’re not in use. Thankfully, as I’d been out just bfore it happened and there was noone at home. This left me shaken and stuck in fight or flight mode for the rest of the day.

On top of that, I had 2 sensors for my Freestyle Libre give up the ghost within a couple of days of one, another. To be fair, the sensors didn’t give up the ghost, the adhesive did. I also have a suspicion that I may be allergic to them. Not sure if it’s the adhesive, or if it’s the actual sensor. I’m waiting on replacement sensors and fully intend to continue using them. It may just mean that I have to use it intermittently, raher than continuously. I’ve already had fantastic results with it – fantastic in the sense that I had enough, reliable data, to fine tune my pump with a notceable improvement in my numbers, and more importantly, in how I was feeling.

So, why the black dog days? It’s hard to put my finger on it. Nurses have this thing called Hypothetico-deductivism. I should point out here that it’s not exclusive to nurses, but we use it a lot. It’s basically grand sounding words that mean trusting your gut; experiential learning.  I’ve been here before. Lots of times in fact. I’m getting lots of cues and red flags about my mental health and I trust them. Being incredibly, disproportionatly disappointed or angry when something doesn’t go to plan, for example. See earlier mentioned sensors not sticking when they should. I ignored these cues in the past and ended up in a state I hope never to be in again.

The list of my warning signs includes not sleeping well; Anxiety and stress – That’s the big one.  The problematic one. The most disruptive one.  I find myself questioning and doubting myself all the time. I’m a rubbish partner, parent, friend, boss, colleague, <INSERT RANDOM RELATIONSHIP/ROLE HERE>. I know where this, in particular, comes from and thankfully, after years of living with it, I have strategies to deal with it. Then there’s the catastrophic thinking. Don’t get me started on the catastrophoc thinking.

I also get grumpy and irritable and have a tendency to care less about my physical health.  I had 2 custard doughnuts for my lunch today. Not the best choice I’ve ever made. I also never bothered to change a set yesterday when it was due.  The net result was a painful lump in my abdomen tonight and a BG of 17mmol/l. Thankfully only 0.1mmol/L of ketones.

Talking (and blogging helps). Identifying triggers definitely helps. Recognising when the self help stuff isn’t working and knowing when to ask for help and/or medication helps. Thankfully I have people around me who know when I’m not so well and have the confidence to speak to me about it.

Despite all of this, I’m nowhere near as ill as I have been in the past. Winter is always a bit hard for me. I’m still getting a fair amount of pain in my feet, leg and my hip, with no sign of a physio appointment yet.  I’m also still waiting to get my left carpal tunnel sorted. To cap that all off, my trigger finger in the left hand is back too. Work is busy and I have lots of days where I feel I’ll never get everything done that I need to do. I’m well aware that most of us have days like this. That it’s perfectly normal. That I shouldn’t judge my performance on days like this too harshly.

I found this on Facebook, and thought it summed up perfectly where I am just now.

Don't forget

So, tonight, I’m going to publish this post, have a long bath, have a medicated sleep (OTC stuff only), do my best to stop the negative thinking – I know I can do this, because I’ve been here before and managed.

Better late than never, Elsie and I, day #260

It finally arrived, my Abbott Freestyle Libre. After tweeting about it since it was announced at EASD 2014 and I admit, hassling @abbottnews about it for weeks.

I was more than slightly frustrated by the hype that Abbott had created, then it seemed that they were unable to deliver the goods. Following on from that, they quietly started selling the Freestyle Libre, without notifying all the people they had encouraged to sign up for alerts. Putting all of this aside, I was still extremely keen to get my hands on one.

Studiously following other early adopters, as I’ve heard us called on Twitter, the Freestyle Libre experience seems to have been absolutely polarised. It’s either been fantastic, or extremely disappointing in equal measure for people. Lets not forget that this is an expensive piece of kit. Ok, it’s not quite the cost of Continuous Glucose Monitors from the likes of Medtronic and Dexcom, but it’s still close to £140 for a starter pack if you are in the UK. With this in mind, I think it’s fairly reasonable for people who’ve not had the expected performance from their sensor and reader to be a bit disgruntled and have a rant on Twitter.

I have a feeling that Abbott were somewhat taken aback by the initial demand for this product, but it may just have been a clever marketing ploy to whip us all into a frenzy after EASD2014 and keep us hanging by a thread until we were foaming at the mouth with frustration.

My 3 little yellow boxes arrived today, bang on time, as per the text message I got from the courier company. Hat’s off to Abbott for using a reliable courier who knows how to keep customers informed. Customer Service positive #1.

IMG_5294 IMG_5295

I had been looking forward to this moment for ages and couldn’t wait to start. Within 20 minutes of the parcel being delivered I had applied the sensor, as instructed to the back of my upper left arm.  This was incredibly straightforward. Surprisingly, I had a little bit of discomfort, which I wasn’t expecting at all. Having read lots of blogs, and looked at the promotional videos from Abbott several times. Everyone was in agreement with Abbott that insertion was pretty close to a pain free process.  Don’t get me wrong, this wasn’t exactly painful, just a bit uncomfortable.  I wasn’t too bothered by this.  I’ve had far more painful set changes and injections in my 30 years of being Type 1.

I started the sensor which simply needed me to turn on the reader and swipe it over the sensor.  The countdown began:

IMG_5299

After 15 minutes or so, the sensor was still a little uncomfortable.  I never thought too much about this, but put my hand to it to find that it was covered in blood. This explains the discomfort. I’d obviously nicked a little vessel when I put the sensor in. I can’t deny that I was a little bit freaked out by this.  I’ll refrain from reposting the gory picture that I put on Twitter and on the Freestyle users page on Facebook again.  I was imagining, like a set for my pump, that once it was bleeding, the sensor would become unusable. Bear in mind these babies are close to £40 a pop. Ater I had calmed myself down I called Abbott Customer Services.  My call was answered quickly and the rep I got was very helpful. After asking me a few questions about how uncomfortable the sensor was and how much blood there was, he advised me to remove the sensor and told me that he would send a replacement to me. Customer Service positive #2

I had to pick The Boy up from school, so decided to leave the sensor in place meantime.  After an hour it started working.  Variance as been between 0.2mmol/L and 4.2mmol/L. I’ve done fingersticks using the Libre and my Contour Next Link.  The higher variance has always been with the Contour meter.  I’m pleased with these figures.  Abbott advises that a significant variance is to be expected in the first 24 hours. Notably, the largest variance was after a large, high carb dinner with a post prandial high of 14.2mmol/L on the Contour. The discomfort has gone too. I’ve decided to leave the sensor in for the time being.  I was advised by @Colonelblighty that sometimes with CGM, the bleeders worked best and @drivendiabetic that no one had associated bad sensor performance with bleeding on insertion.

So far, I’m pleasantly surprised by how well it appears to be working.  My main aim for using the Freestyle Libre, is to look at profiling, so even with some variance, I’ll still be able to see periods where my blood glucose is rising or falling and will hopefully make it easier for me to fine tune my pump. Oh, and I’m already loving the graphs.

Fingers crossed it continues.

Return of the absentee blogger. Elsie and I, day #252

Day 252! Its been 164 days since I last blogged. Lots has happened. Run of the mill stuff, but busy nonetheless. The Boy has been doing great since his diagnosis in May. Going live on his pump has been fantastic for him and I’m glad to say that he’s taken to it like a duck to water. I honestly can’t remember what it was like after I was just diagnosed. I vaguely remember being hungry, mostly, and there being lots of hypos, but that could have been all of my teens and my twenties if I’m honest. Not really much to report about The Boy’s progress, other than it’s been generally good. He had a school trip – 3 days and nights away, that passed without event. Lots of credit needs to be given to the Teachers and to the DSN’s who supported them and wrote a minute by minute plan of how to manage all of the activities that were scheduled over the weekend.

I’ve been getting on ok with Elsie and seem to have settled into a routine that’s generally working. I use different profiles for different shifts, which is working well. I’m still having a few more spikes than I’d prefer, but that’s more down to the choices I’ve made, than issues with the pump or my ratios.

I’ve made no secret of the fact that I’m addicted to carbs. I love them. Bread, cakes, biscuits and anything else you care to put on a plate. I’m not going to beat myself up about this. Food is to be enjoyed. Too much diabetes education, for far too long, was about what you can and can’t eat. This as left many of us with a negative relationship with food. It’s taken me a long time to not feel guilty about what I eat. This is no mean feat given that I’m a nurse. Many of my colleagues (some of whom were trained by Florence Nightingale) still question me about what I’m eating and if diabetics “are allowed that?” DAFNE and New Deal for Diabetes have come a long way, but the rest of the NHS is sadly still very much in the dark about managing diabetes.

What I do need to do, is take responsibility for managing what I eat. I’ve found generally that pre-bolusing for all, or a rough estimate of the carbs I’m eating in a meal by 30-45 minutes is making a huge difference. Saturday’s tea was vegetable soup with home baked bread and chicken pie (homemade too) for the main course. I estimated this to be around 140g carbs and bolused for 80g of these 35 minutes before we sat down to eat. No prebolusing for the boy – he’s so sensitive to his insulin theres no need. 2 hours after eating (and taking the remaining insulin for the meal) my blood glucose had risen by 0.1 mmol/L. I’d love to say that I’m this successful every time I try to do this, but sadly it’s not the case.

Going low carb a couple of days a week has been good. 2 or 3 days is acahievable and seems to work well on the days I’m working. I don’t fancy it full time though. It would be dire to never have a slice of pizza or some cake if I fancied it.

I’m due a review in a few weeks and am really keen to find out if my A1c has dropped. My last one was improved dramatically since sarting the pump. and if I’m totally honest I’ll not be disappointed if it doesn’t drop. 7.1% is still far better than it’s been for years.

I’ve got loads more I want to blether on about including the Freestyle Libre. I got very excited about this and have at times been crowing all over Twitter about it. Abbott were being very vague about availability and I decided to put my savings down on a new car. Turns out it’s been available for over a week and everyone else in the #GBdoc has beaten me to it. I’ll just have to wait a few more days until payday before I order one.

Elsie and I, day #88

Where do I start?

Everything was thrown into chaos last Friday, when my son was diagnosed T1.  We’re all feeling a bit shell-shocked.  I still can’t quite believe it’s happened, but it has, so there’s nothing to do but deal with it. The Boy has been fantastic. He seems to be taking it in his stride, but I’ve a feeling there’s a big (understandable) meltdown on the way. I’ve already had a couple and most nights before bed I’m more than a little bit emotional.

We’ve been incredibly well supported by the Paediatric Diabetes team at our local hospital and thankfully he didn’t need to be admitted. There’s been so much to take in, even though it’s stuff I already know. It doesn’t matter that you’ve got nearly 30 years experience dealing with a condition, when suddenly it’s not yourself, but your 10 year old you need to test, inject and carb count for. I’ve always tried to answer The Boy’s questions about my diabetes and I think it’s helped a huge amount. He already understood what Type 1 Diabetes is, including basic physiology and how it is managed.

I’m incredibly proud of how quickly he took responsibility for testing his own blood glucose and injecting his insulin. Without any prompting, he asked when he was going on a pump. So training starts next week. This may change though – going live date clashes with the school show and The Boy is currently mulling over which is better – giving up his big part or delaying go live! I’ll keep you posted.

I really do wish that I could take it away from him, more than anything I’ve ever wanted in my life. It breaks my heart to know that I can’t. All of a sudden I feel like all of my worries and anxieties are trivial and unimportant, and I just want to fix it. I know I’m not alone in feeling this frustration and anger. Countless other parents, including my own, have gone through exactly the same thing. I need to focus on the advantages we have. I’ve already got a fantastic network of people I can go to for help and support and I certainly know enough about diabetes and how the system works to look out for him and create merry hell if things aren’t going as they should be.

As far as things are with Elsie and I, we’ve kind of been bumbling along, things are generally going ok with a bit of a creep up on my overnight and morning readings. I think this down to a shift in my body clock affecting my dawn phenomenon. I know why, but haven’t done anything to rectify this yet. I’ve been working less early shifts than usual and a lot more lates. The net result of this is I’ve been eating later and getting to bed later – often after 2.00am because of the shifts I work. No averages for this post. Technical issues mean I can’t upload data from my pump to the Medtronic site. I’ll hopefully get this sorted soon.

Things to work on: Keep calm! & Basal, Basal, Basal!

Elsie and I, day #50

Today has been a generally good day. After all the stress of the last few weeks I’m beginning to feel like my old self. My GP has reduced my BP meds and I’m feeling a huge difference already.

I’ve spent some time looking at my last few weeks results on Carelink and using the 1800 and 500 rules with my average daily insulin dose. I’ve reduced my insulin to carb ratio and my correction factor. There’s been a noticeable improvement already.  Remember if you work in mmol/l you will need to divide your result to the 1800 rule by 18 to convert from mg/dL to mmol/L.

I also managed a tasty low carb dinner, loosley based on this grilled swordfish with peach & avocado salsa. Peaches are out of season, so I substituted kiwi for them and used cod because it was reduced in the local supermarket. 18g carbs in one serving I reckon. (I used the My Net Diary App to calculate this).

I’m looking forward to the next few days to see how things go and hoping to get some (gentle) exercise done tomorrow.