Medical Information

Do You Know Your Medication?

I read an excellent article recently. The author, Jenni, highlighted some recent research, which showed that people are less likely to know the names of inhalers they take regularly than any other medication they take.

This really concerns me. Yes, inhalers are colour coded according to type (blue for short-acting ‘reliever’ inhalers, brown for steroid ‘preventer’ inhalers, green for long-acting ‘reliever’ inhalers, purple or red for combinations of green/brown, and yellow and grey for less typical asthma medications), but the differences between medications of the same type, and the differences in strength/dose can be significant.

I may be in the minority here in worrying about this, and I feel that I should declare my allergy to Salbutamol, and my early medical training. Having an allergy to one of the Blue inhalers has always made me very wary of grouping different medications together, by colour, of all things! I lost count years ago of the number of times I was given Salbutamol accidentally because either the person prescribing the medication, or the person administering it, didn’t realise that there was more than one ‘reliever’ medication for asthma.

If you take any regular medication, including inhalers, please, please learn the generic name and the dose. That includes medications that you can buy over the counter, herbal remedies, and supplements. Don’t forget that not all medications go in your mouth. Creams, eye drops, inhalers, nasal sprays are all still medications. I know that medication names are unfamiliar words for many people, but you are the only person with enough of a vested interest in this to learn your own medications, and the only person who will always be there at your appointments/hospital admissions. If you really can’t remember all the names and doses, write them down and carry them with you at all times.

I’ll write another time about the emergency information that I carry with me, and the information that lives in my hospital bag (like an FBI ‘go bag’ but significantly less glamorous), ready for the next hospital admission.

Please don’t write off this post as only relevant if you have very severe asthma or take lots of medications. You may be less likely to spend time in hospital than I am, but there’s always the ‘hit by a bus’ scenario. With 8,765 buses in service in London (according to Transport for London, 2013-14), that’s quite a risk. There are so many reasons that any one of us could need hospital treatment at any time. If you don’t, or can’t, tell people what medications you take, it puts you at higher risk of problems from medication interactions, or withdrawal issues if you suddenly stop medication that you usually take regularly. Something as apparently trivial as a garlic supplement can, in reality, have a significant enough effect that it needs to be stopped a couple of days prior to surgery to reduce the risk of excess bleeding.

If you often leave home without a bag/wallet/pockets, if you think that you might not be able to speak for yourself, or if you have dependents who might need this information but can’t remember it, I thoroughly recommend getting a medical alert bracelet. There are lots of companies that make medical jewellery, which is perfect if you only need to get a few words across to emergency services. I’ve used MedicAlert for years (I’m not affiliated with them in any way, other than having used their service). MedicAlert have a service that allows you to store a lot of information on file, accessible to medical professionals who ring the number on your bracelet/necklace (24/7, from anywhere in the world, with information available in over 100 languages). Perfect for me, as I struggled to fit even just the essentials onto the engraved emblem. At one point, we considered writing something along the lines of, ‘medically complex and fragile – do not touch – ring this number.’

Joking aside, wearing some sort of medical alert, even if it’s just a way to alert people to your next of kin in an emergency, is worth considering. They’re available in all sorts of designs, suitable for athletes, women, men, children… I wear mine as often as I can (I need to get one in a different material, as the metal of my current bracelet irritates my skin) and always carry the laminated card that accompanies the jewellery. If you have a hidden medical condition or disability, allergies or take regular medication, you should consider it essential! I sometimes wish that everyone had to wear a MedicAlert bracelet, just so that medical professionals would remember to look for/at them!

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Medical Information, Recipes, Update

Quick November Update

Sorry it’s been so long. It’s not that I don’t want to write, but that there’s so much to tell you and I don’t like to share too much miserable medical stuff at once.

I’m going to tell you all the miserable stuff, but I’ll try to do it quickly, and then I’ll give you the recipe to the most wonderful baked (healthyish) doughnuts. Deal?

Deal.

As I think I’ve a already mentioned, I’ve had problems with my care package. Lots of reasons including a corporate merger/takeover. The upshot is that I’ve had 1.5 days of care since the end of August. It’s really catching up to me now. At first it was ok because Husband, the cleaner and I could pick up the slack between us. As time has passed, however, I’ve had to neglect more and more things. At first it was the laundry (too heavy), then it was washing and drying/styling my hair. My shoulders dislocate if I lift my arms above my shoulders; I can’t control my body temperature very well, so I get very hot and/or very cold in the shower; hot water makes my blood pressure drop enough that I don’t feel safe showering when I’m alone in the house. I haven’t managed to stay on top of grocery shopping (even online) or putting the shopping away, planning meals and cooking.

On the plus side, we bought a slow cooker, which has been amazing. Husband works long hours, and I hate that he doesn’t have food ready for him when he gets home so late. The slow cooker has really helped with that because I can set it off in the afternoon when I tend to feel least awful, and it just cooks away unsupervised (on a timer) until we’re ready for it. It switches to a warming setting once it’s completed the set cooking time. I have no idea how I managed without it!

Back to medical tedium.

The medical supplies (which I’ve shown to some of you) have been a problem. I have three separate home delivery companies that deliver certain items, most of my medication is ordered through my GP surgery (online) and collected from my local pharmacy a few days later, but there are still lots of supplies that I can only get through two local hospitals. One is very organised, and just sends me an email when the delivery arrives so I can pop in to collect it, but the other has struggled. Because I haven’t chased them enough, and because they don’t seem to be able to manage it themselves without chasing, I’ve only had 1.5 months’ supplies from them since May.

I’ve been functioning in a kind of ‘survival only’ mode for months now. I have so little energy that I can only manage the bare essentials. I’ve just about managed to stay on top of the medications that I need every day, which is a lot:

– 16 hours of IV fluids every day
– 20 hours of feeding through my j-tube (I’m failing miserably with this)
– 36 medications that I take regularly or as needed

I’ve had so many infections this year. Looking back at my diary it seems to have been every 4-6 weeks all year. Yep. Every 4-6 weeks I get a new infection and have to have 7-10 days of intravenous antibiotics. Mostly this has been manageable (apart from meaning that I feel awful from infection then awful from antibiotics). My routine meds are every eight hours. Most of the antibiotics I’ve had recently have fitted nicely into this schedule, but I’ve got a nasty abscess at the moment, which hasn’t responded to antibiotics yet. When the swab results came back from the lab, I was switched to my joint-most-hated antibiotic. It’s given intravenously every six hours. This does not fit nicely into my medication schedule.

I feel as though I’ve been teetering on the edge of a precipice, constantly fighting to keep my balance. Fighting infection after infection, spending more and more time in bed, my life revolves around my medication schedule.

The heavy-duty painkillers that I take are not doing their thing. I take them, which gives me a chance to actually do something, but I invariably overdo things, which causes more pain, which requires more medication. I reason with myself that it’s only worth taking all these medications to keep myself alive and medically stable if they give me the chance to be myself for a while. Logically I still think that makes sense, but practically it means that I take too many painkillers for a week or two so I can do some normal things, then run out of painkillers and spend 2-3 weeks in bed, crying and sometimes even screaming because of the pain. My medical team oscillates between telling me that I shouldn’t allow myself to run out of painkillers, that there’s no point in suffering, and that it’s akin to torture not to take painkillers when I dislocate something (true), and refusing to prescribe these controlled drugs if I request them more often than every 4 weeks. I’m sure I’ll find a balance, but it’s so hard to rest when I feel ok, and so hard to ‘save’ my painkillers for when I *really* need them if I’m already crying because of the pain.

I didn’t intend to write about painkillers (there’s enough for a full post on its own), but it gives you some flavour of my current quality of life, perhaps.

I’m not suicidal by any stretch of the imagination, but I constantly question whether it is worth the huge effort and huge expense to keep me alive so that I can spend my days alone, in bed, crying in pain. I recognise that sounds negative, but it’s true. I do manage to find happy moments, and still enjoy so many things, but I find myself less and less able to do the things that I enjoy most. I haven’t even managed to get to the hospice for weeks. Every time I find a new fun thing to do, my body seems to find a way to spoil it. It’s a very passive-aggressive body.

The final straw on this particular donkey is that Husband is away with work all week. I’m so scared to be alone for so long, but I don’t have the energy to pack up all the medical stuff I would need to relocate somewhere else. I’ve been pushing the thought of a hospital admission to the back of my mind, but the fact that it’s in my mind at all is a sign that things are hard.

Well done if you made it this far! I completely understand if you skipped ahead to here (you didn’t miss much – just a whole lot of complaints).

Here is your reward: the nicest doughnuts ever! They are really quick and easy to make, have pumpkin in them (and therefore less fat without being dry), are baked in the oven instead of being deep fried, and they keep well for a couple of days in an airtight container. If possible, they’re even better the next day.

Baked Pumpkin Spice Doughnuts

Ingredients:
1 3/4 cups plain flour
1 1/2 tsp baking powder
1/2 tsp salt
1 tsp ground cinnamon
1/2 tsp grated nutmeg
1/2 tsp allspice
1/4 tsp ground cloves
1/3 cup vegetable oil
1/2 cup soft light brown sugar
1 egg
1 1/2 tsp vanilla extract
3/4 cup tinned pumpkin (or homemade pumpkin purée)
1/2 cup milk

For the cinnamon sugar, mix together:
2/3 cup sugar
1 – 2 tbsp ground cinnamon

Method:
1. Preheat the oven to 180*C
2. Mix together the flour, baking powder, salt and dry spices
3. In another bowl, mix together all the other doughnut ingredients until just combined
4. Add the dry ingredients to the pumpkin mixture and stir until just combined (over mixing is the enemy of these babies)
5. Spoon or pipe the mixture into a doughnut tray (I use a silicone one) or into mini cupcake cases
6. Bake for 5-7 minutes (for the teeny ones) up to 10-15 minutes (for giant ones)
7. Turn out onto a cooling rack
8. Dip into cinnamon sugar before serving

(Makes 4 giant, 24 small or 72 really tiny doughnuts)

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