Insulin Pump Journey | Part Two

Small prologue: I decided to sit down and write this post today because Phife Dawg, a member of A Tribe Called Quest, a legendary hip hop group, passed away today. He was only 45 years old, suffered from bad health and had diabetes. The guy was an absolute legend and 45 is no age to die. It made me put this struggle I've been having into preceptive: I want to get my diabetes under control and stay that way so I can actually reach old age you know? If a bit of discomfort and extra hassle means I can become a lot healthier in the long run then I'm going to crack on with it. If you're feeling lost with your health, I find comfort in finding people going through the same thing on the internet, you're not alone! 

"Mr. energetic, who me sound pathetic?

when's the last time you heard a funky diabetic?"

'Oh My God' - A Tribe Called Quest

Well it's been quite a long time since I did part one of my insulin pump journey. It took quite a long time to hear back from the funding team to tell me whether or not they were granting me the funding to get a insulin pump, and the great news is that they did.

Now I'm going to insert a H U G E disclaimer before I get into explaining what happened at the pump fitting, and what's happened since that appointment and up to present day. I've been having massive issues with the infusion sets due to my fibromyalgia. One of the big issues with fibro is that it causes 'Hyperalgesia: a increased response to a painful stimulus.' I have to use a insertion device to put the cannulas/infusion sets into my skin and basically my body freaks out about it and makes it more painful than it should be and then makes it continue to hurt for hours and hours afterwards. These infusion sets need to be changed every 3 days so I was having one day of horrible discomfort and pain, one day where the site was completely fine, and then the third day can be a bit tender because it needs changing.

The thought of having to deal with this extra pain on top of my existing pain and illness was scaring me to death. I felt like I had made a big mistake and that I was going to have to give up insulin pump therapy and go back to injections and that was a horrible thought because injection therapy was just not working for me, I mentioned in my first pump journey post that I was having constant hypos and nothing seemed to be working. When I was in the fitting appointment, the pump rep said I couldn't use my stomach to put my infusion set in because I had been injection there for years and there was quite a bit scar tissue and fatty cell build up, so she told me to use my back, slightly on the side. Now that area of my body is the most painful thanks to my fibromyalgia; my lower back and sides are basically in constant pain, you could lightly press your fingers on these areas and it would hurt me a lot, so when she told me I had to use that area on my body I  had an anxiety attack and started crying, yep, nice and embarrassing. When you do pump fittings, they'll usually pair you up with another patient who's also getting the same pump and they'll do the appointment together, so I was pretty embarrassed to burst into tears in front of a woman and a girl I didn't know, but of course they were lovely to me and calmed me down, and I inserted an infusion set by myself while in the fitting. It didn't hurt at first, but once leaving the clinic the site was very uncomfortable.

I'm not going to go into detail about each time I've changed the sites because I don't want to put people off, this isn't going to happen to you if you don't have fibromyalgia or a similar illness. Adjusting to wearing a pump in general can be quite frustrating at times so I would keep that in mind, it is going to be weird but just take your time and try and keep your patience; I always look at stressful moments and think 'at least next time I'll know' the whole experience is a learning curve, which is what's kept me from ringing my diabetic nurse and telling her 'I'm out'.

I'm in contact with my specialist nurse through email and she gets back to me as soon as she possibly can, and Accu-Chek company have been awesome! You order your pump supplies through them and they have a 24 hour helpline that I've called a few times and they're extremely helpful, it goes to a call centre in America, but the calls are free regardless and they know their stuff! During the fitting the rep gave both of us a bra sleeve for the pump, which is a little sock that has a clip so you can slip it onto your bra strap, I use it all the time, but I did phone Accu-Chek asking to buy one of their thigh straps and the lady gave it to me for free! And after not liking the thigh strap, I emailed them and asked if I could buy one of the plastic clip cases (to clip onto waistbands, belts etc) and they sent me one free of charge because I didn't get on with the thigh strap! I'm very grateful for their support, especially because they saved me over £40!

In regards to the pain I get from changing my infusion sets, I went to see my diabetic nurse at my local hospital after one of her clients and she told me I could use my stomach, but a lot higher than where I used to inject, which I'm very happy with. I still get the same pain but the placement itself is just a lot better and now I can wear my jeans without the waistband rubbing on the infusion site! I have figured out a little way to ease the first 24 hours of a new cannula, so this is what I do if anyone out there is having issues!

1. I insert a new infusion set in the evenings. Not too late because you need to make sure the site is okay and delivering your insulin as it should before you go to bed in case you might not realise a problem while you're asleep! So I'll change it after dinner, sit down for a little while to let my body relax, and then I'll get into a bath because it seems to really help take away the stinging in the surrounding area.
2. Make sure to keep testing your blood sugar during the evening to make sure there's nothing wrong with the site. Very rarely the cannula might not go into the skin or might of bend out of place, so insulin might not be going into your body, and you can't be having that before you go to sleep because that's very dangerous, so just make sure everything is cool.
3. I take extra co codamol on the day I'm changing my site to make sure I've got a bit of extra pain relief in me to cover myself. Maybe simple paracetamol may help you if you don't have fibro.
4. Then I go to bed! So far it seems I miss all the discomfort I would usually experience if I changed the infusion site during the day because I'm sleeping, and then the next morning it's absolutely fine!

FYI those aren't stretch marks on my stomach, they're marks from the tubing being tucked in my waistband!

I'm hoping I can keep this up and then living with this insulin pump will get easier as I learn more how to live with it, handle it, and gain experience so I become a pro at whatever the pump wants to throw at me. The actual pump and blood glucose meter themselves I love, especially the Bluetooth technology!