Sorry that I haven’t written in a while, it has been very frustrating for me, because it was due to lack of Internet, which means that I missed out on lots of other things as well, but I’m back, and I plan on making up for that in the next short while!!!
I have never thought of myself as being a pill popping kind of person, and I like to think that that remains the case … the less I take the better and I hope that that will always be the case!! But it is interesting how sometimes we see ourselves differently than those on the outside do, and so when I was rummaging in my medication travel bag a few weeks ago and my son said “WOW!! What a lot of pills!!!” I felt very defensive and said “nonsense, I barely take any of these!!” … and felt slighted that I had been “judged” harshly and incorrectly (even though he did nothing wrong, was simply making an unbiased observation) … but it has been playing on my mind a lot!
Where exactly the truth lies is complicated… Yes, he was correct when I think about it, that there were a lot of pills in there, and yes I was correct that most of them I don’t take … It had been a roller coaster prior to diagnosis with each doctor and specialist switching brands, switching ideas, and coming up with something better than the last “failed” diagnosis or professional, and I quickly learnt that some meds that had been discarded along the way were then freshly diagnosed by someone else down the line and I was glad that I had not thrown them away. So my bag contained quite a few boxes of anti inflammatories, pain killers, both oral and topical, in gels and patches, pills and creams. Then because I travel a lot some of the meds looked different with different brands names, but were essentially the same thing but bought in another country… not to mention over the counter pain killers with different brands and different countries, the same applies.
The challenge at that point for me was to work out which to keep in my travel bag, which to leave at home, which to actually throw out, and which to use up first. Not to mention that clearly I came across to my son as having a LOT of medications, and so maybe it was time to consolidate them all, for no other reason than because a lot of the boxes and packets were almost empty and taking up a lot of room. So a bunch of rebottling, relabelling, and resorting was needed …. and then I was disappointed by how much still remained… I truly thought that there would actually be only one or two!
I also suffer from a bunch of stupid “little” things that we are trying to sort out once and for all, but because my body heals so slowly, things that should require a “course” or two of some potion or other, seem to take anywhere up to a year to resolve. My left ear has been blocked on and off for the past 6 weeks (though has been a problem for years), and the fact that I no longer have a thyroid means that I will forever be taking replacement pills for that every single day of my life … so technically it is replacing rather than medicating right?
And really, who cares if I take one pill or seven? What’s the big deal?
Well we have been away the past week, sleeping in a different hotel room every night, and I have felt like giving up in despair many a time! This is what I take in a nutshell:
I have pills for my thyroid which need to be taken an hour before I eat anything, and definitely an hour before anything dairy. One I take every day and the other I take only on Mondays, Wednesdays and Fridays.
I take replacement vitamins and minerals because my body doesn’t absorb them properly but also because my OAS means that I am allergic to all uncooked fruit & veg. I can’t take these for at least an hour, preferably two, after my thyroid medication otherwise my body absorbs one and not the other but never both. And a few times a week I need half a Berrocca to keep the mouth ulcers as under control as possible (which is sadly never in control enough for my liking).
I need Vitamin D on Sunday, Tuesday and Thursday evenings, after food and before bed …
We are experimenting with taking Oestrogen every day (which I will post on later, and I THINK is maybe working a little bit woohoo!!) which is good news but in the small doses that they want me to take, I have it in a gel that I rub over my foot and leg. It feels a little like the alcohol gel that we use to wash our hands, but I take about two teaspoons of it and I need to rub it in. It covers an entire limb, so I can cover an arm or a leg or both forearms or both calves or thighs etc… but it takes a while to dry, and once on I can’t shower or swim for four hours otherwise it will wash off, and I can’t let an animal or a human touch it for a minimum of two hours because it is a strong hormone! That might sound simple but it means no cuddling in bed if I put it on before bed, and no swimming in the morning if I put it on in the mornings ….
And the oestrogen has side effects, one of which is uterine cancer and as I still have a uterus, I then have to take Progesterone every day as well (to counteract the cancer possibility). The oestrogen at least comes in a pump so I press the pump twice for two doses (which is what I am on) and off we go. The stupid Progesterone on the other hand comes in a jar with a spoon!! The spoon doesn’t fit in the jar (and I am not even entirely sure that it is the right spoon, as the chemist found it “lying round”). So I have to spoon it out and level it, then get it ALL out the VERY rounded cup of the spoon (so it gets under my fingernails) and then rub it on, but nowhere near to the Oestrogen, and as it is a cream not a gel, there is no alcohol to evaporate, and it is SUPER sticky for the next few hours, and I hate it! Then I need to wash my hands well, not touch anyone with them for a while, and wash the stupid spoon (and put it somewhere that I don’t lose it)!
Soooo, the sheer matter of fact that I share my bed with another human being, particularly a male human being who does not want ANY female hormones, makes even that process complicated!
Then there are the pills that I take two in the morning and two in the evening every day … but only one week out of every four! (for 4 courses but now after six courses look like it will be at least another year!!)
There are the pills that I need to keep on hand for pain management, and I can’t take them ALL … so once I have decided that I need some, I have to work out how I think the night will go and which level to take! If I take the weaker ones then I can’t take the stronger ones for a further four hours, and if I take the stronger ones then I need to manage that as I can’t take them every night so I need to be sure that this is the night that I need them most!
There are the pills that knock me out but mean that I can’t get up too early the next morning without feeling like I have been hit by a truck, so I need to consult the next day’s diary before taking them, …. not to mention that if I don’t get a good night’s sleep for a few nights in a row then I really go down hill.
The nose drops need salt water washed up the nose hard and fast and make a huge mess over the sink, then the drops straight after but if I’m not lying down then they drain out again, so I have to be ready for bed and lie on the left side till they absorb. (and in the morning take them early enough to rest on my left side for half an hour or so, but I have to first get up and wash my nose out!) … today was the last day of a week long course and my ear is no better and I can’t face going back to the GP today to work out plan B!
So it’s not like I climb into bed each night, or get up each morning, and take a pile of pills and rub down the ointments, and then curl up and go to sleep or get up and get on with my day. I am SOOOOOO sick of it all! I feel like I am no longer allowed to be spontaneous … I feel like between one set of pills as I wake, then an hour or too before the next lot … blah blah blah ….
And then, every now and then, I get a day “off”! The timing of the week long courses, Mondays or Wednesdays or whatever, mean that once in a while I have a day when I take the minimum of everything and you would think that I’d be thrilled! And I am … at first … till I fall asleep that night and have nightmares that I forgot half my meds for a month and I can’t find them!!!!
Ugh!! Imagine what I’d be like if I WAS the pill popping kind of person!!!