Apologies for the rather dramatic image. Imagery which represents pain is not an easy thing to find unless a scrunched up face is your go-to. It has been a pain to find a suitable photo. Not as much of a pain as Diabetes.
If you read or publish your own stuff on the Internet, perhaps via social media, then you've probably engaged with somebody who has had an "ouch" moment. You've probably experienced several, yourself. That's life, right? We experience pain because our brain is telling us something is wrong and to warn us that we're possibly damaging ourselves. We avoid pain because it's unpleasant. Yet with Diabetes, specifically Type 1 in my case, pain appears to be an acceptable part of the day to day management of the condition, at least in it's physical sense.
I've been thinking about some of the pain which I've experienced from near 37 years of T1D.
Those first few days were brutal, as an 8 year old boy. The guillotine-style finger pricker might seem like a horrendous looking thing to use, these days but when compared to a manual prick from a ward nurse it was very welcomed! The finger pricks became the first thing that I became conditioned to. They still hurt of course and they still hurt today! But something doesn't really register as a pain, eventually. Perhaps the brain knows what's coming and it's all; 'Okay cool, another finger prick, have a drop of blood.' I think finger pricks, today are relatively low on the pain threshold. Pricking devices have advanced, we can pre-determine the depth of the prick (stop laughing) and lancets seem very good compared to those of the mid 1980s - assuming you change them. You do change them, right?
In the early years, needle tech and information wasn't great. I remember those syringe needles being pretty big and getting used several times. Little wonder that my injection sites were frequently bruised. I remember it took 3 or 4 days before I no longer needed a team of HCPs to hold me down for my twice daily jabs. Now, of course, injection technique is a thing. Needle length is a thing and single use is definitely a thing. Injections still hurt but far less than the early days. I think the advancements in injection tech and knowledge have reduced the pain in that area.
Recently, I've started pumping (you may have noticed) and that means a different type of pain; cannula insertion. I prefer using an insertion device, some prefer manual insertion. Either way, you're going to insert a needle and cannula into you and withdraw the needle while leaving the cannula behind so you can pump insulin in. I've only ever done this to myself, no HCP has helped or advised, although for the first two insertions I had the help and patience of a friend on Zoom. I found manual insertion to be more painful than using an insertion device. That might be because I'm slow and deliberate rather than fast and zappy. It's generally the same pain level as a syringe or insulin pen needle injection but I have found the after sting lasts for a little longer. In addition, boluses can sometimes feel "a bit stingy" although I've found that to be site dependent.
Ah, technology. A wonderful thing. It still hurts. I'm currently using GlucoMen Day CGM and that is the least painful CGM that I've used to date. No guide needle helps to minimise the skin trauma. When it's in, it's in. It probably hurts more to remove the sensor because the adhesive keeps it so firmly attached.
Libre? Possibly the more painful of the glucose devices, for me. Although, again, that is somewhat site dependent. I have found the upper thighs hurt the least and that is the same for every Diabetes tech device which I've inserted there. Have you got a favourite site?
Adhesive? My advice is to choose a not-very-hairy site on your body. Some of that stuff will give you a tiny area of your body a free waxing as a part of the deal when you remove the device. Ouch.
T1D means that the possibly of Diabetes related complications can be a thing in our lives. I'm going to talk about the one which has impacted upon me. I recognise that there are many others and you'll all have your own experiences if complications have visited you.
Diabetic Retinopathy wasn't a very painful experience. Changes in the eyes and even bleeds don't tend to be painful. The treatment and additional complications have been. Laser treatment in clinic was uncomfortable with moments of moderate, stinging, pain but if I had to go through that again it wouldn't unduly worry me in regards to how much it's going to hurt. Deep laser, done in theatre, was more uncomfortable. That involved an injection to numb the eye and a period of soreness for several days. I hope that you'll never experience those things but if you do then please just do it. It's really not awful and your eyesight is worth it and more.
Speaking of more. A vitrectomy?... or two. That's a more invasive procedure and you'll need a GA rather than a local because you really don't want to be awake for that. Post-surgery resulted in a headache and eye pain which grew in intensity. Eventually, drops and Tramadol calmed things down enough for me to stop praying for the merciful release of death. What followed was 2 weeks of soreness and posturing. Posturing is not fun. It involves being face down for 50 minutes of every hour. EVERY hour. to protect the retina. So, 4 weeks of my life, I spent looking at the floor, pillow, sofa, etc and that is no party for your back and neck. And that's how Diabetic Retinopathy gave me a bad back.
There is more and I've saved the best/worst until last. Ocular Hypertension. The gift of retinopathy kept giving some 3 years after my last surgery. It started with a very mild, niggly, headache. I took a couple of Ibuprofen and tried to carry on with my day. Within a few hours I was unable to look at a screen and beginning to worry. By the early evening I was already in bed and despite trying different painkillers, nothing was working. At that stage, I began to vomit from the pain and the debate of when or if to go to hospital was had. There is an emergency eye dept right besides my usual eye clinic. They opened at 8am and I decided that it would be better to present there, rather than general A&E and potentially being admitted. I was sure this was an eye related issue and nothing more sinister and that spending the night on my hands and knees, because that was the most comfortable position, and crying quietly was best done in privacy in my own home.
Eye pressure is "scored" just like your blood glucose. A normal range is something in the teens. My right eye was 14. My left eye, my agonising eye, was 48. I was lucky to present at Eye Casualty at this time as one of the nicest, most experienced eye surgeons was in the building. I will never forget the compassion and clear explanation given to me by Mr Kowatowski. Within 30 minutes I was on IV drugs which began to lower the pressure in my eye. The relief was tremendous and from that and probably not having any sleep for 24 hours, not to mention the worry about my sight, I had another little weep.
My words probably do not carry enough weight for the pain which I felt from the high pressure in my eye. It is by far, without a shadow of a doubt, the single most painful thing I've ever experienced. I've had a broken rib, twisted ankles and a biopsy on my tongue. None of those are in the same league as Ocular Hypertension. So, when you see me encouraging my peers to attend their eye screening appointments, it is for good reason.
Pain relief is something which affects us, as people with T1D, too. Tramadol is a strong pain killer but it has been noted to cause hypos! Co-codamol, which you might be prescribed for a frozen shoulder (I was) is a strong one, too and although it never caused me any blood glucose issues, it was really difficult to wake up of a morning. Naproxen gets commonly prescribed but that can cause stomach issues. And then, of course, Paracetamol and Ibuprofen - they might work for mild pain and don't appear to have any immediate effects on my Diabetes.
Physical pain as a result of Type 1 Diabetes appears to be inevitable, from the very common, mildest and briefest of stings right up to the insanity inducing agony - which I truly hope is a rarity.
Mental pain is another issue, a very important issue, which has only recently begun to be recognised amongst HCPs in Diabetes. I'll blog about that on another day. Until then, tell me about your physical Diabetes pain. Leave a comment below or catch me on Twitter.
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