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Posts Tagged ‘meds’

This morning, I popped my morning dose of ivabradine out of the packet, but didn’t have a drink as usual on my windowsill. In this situation, I’d usually have gone to the bathroom and gotten a mouthful of water from the tap to take it, but my Mum was using the bathroom. All I can remember is I put the pill on the windowsill…

Then, I must have gotten distracted somehow. Before leaving the house, I thought to myself: I’m sure I haven’t taken that pill! Because my knee was still in its unbendy state, I asked my Mum to go upstairs and check my windowsill for me. She told me it wasn’t there. I could still swear I couldn’t remember taking it, so asked her to check in the bathroom too- but was also sure I didn’t go in there because she’d been in there. Reasoning with myself, I could remember I didn’t have a drink to take the tablet with and the only other thing I’d have done is taken it with water straight from the bathroom tap. As it wasn’t in the bathroom either, I deduced that I must have taken it after all, and my morning brain fog was particularly bad today because I couldn’t remember putting it in my mouth.

Well… no, I was right that I couldn’t remember taking it because I DIDN’T TAKE IT!! I just found it on my bedroom floor!!!! God knows how it got there- perhaps I knocked it off the sill with my bedcovers.

Now, this little find pleases me because today, when walking around Newcastle from the train station to the hospital, I felt that weak, breathless dragging feeling. After not having that for a few days and then having it again, it was painfully familiar and disappointing to feel.  I thought it was down to doing such a long walk yesterday. But still this disappointed me, as  ideally I’d like to be able to do walks like that and not have such symptoms the next day… because that means I can FULLY enjoy the walks and not worry about being weak or not able to do things the following day.

So, realising that I indeed had not taken the morning dose of ivabradine makes me feel MUCH better about how yucky I felt when walking round today (and could also explain why I kept going very white and feeling dizzy and faint- I never have fainted, but I had a lot of pre-syncope feelings, nausea and vertigo today).  Thank GOODNESS for this pill. I suspected it would really help me, not sure why, maybe just an instinct (the same way that I always knew something was physically wrong despite the doctors over the years all telling me I had anxiety/stress) but actually, I’m surprised at how big a difference it truly makes!

Today, I kept going really pale (my Mum was with me and she was very worried!) and having pre-syncope and nausea, plus when I was walking around, I felt breathless, …weak, like something is dragging me back or like the air around me is thick treacle… everything feels difficult. With ivabradine I don’t get any of that. I can walk around and feel quite ‘normal’. I can walk faster because the air is just like air, not treacle- and my limbs are like arms and legs, not lead.

I told my Mum and she gasped and said “That must be why you felt so funny today!” (There was a moment in a cafe as well when I felt close to fainting just sitting up and things swam before my eyes- it freaked me out because, having never fainted in my life, I’m scared to start as I fear it would mean I’m getting worse not better!). Then she laughed and said I was turning into Gran- my Great Grandma- as my Mum and Grandma were always finding tablets on her living room floor.

WHOOPSIE!

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Exhausted now!

Had a busy day for a potsy today. I’d love to know what it’s like to be able to do things without becoming completely drained and having to take to bed. I’d love to have that much normalacy, but I think I am going to have to accept that it’s highly unlikely to ever happen. I’ve had this chronic fatigue aspect of pots for 9 years now, so long I’ve forgotten what that would be like.

However, on ivabradine I’ve managed to do a lot more and for longer before becoming wiped out. I got up at 9.30am and me and my Mum left the house right away (I ate an apple in the car for breakfast and always have my water with me). We went to swop the bathroom cabinet for another one, went in TKMaxx and I got a lovely orange scarf, then went to my bfs to take the cabinet and stayed there an hour while he took some stuff to the tip. When he got back, Mum took us out for lunch, then me and Mum went to another shopping centre for her to get a few things- including a new phone. We got back to the house at 3.15. That’s the longest I’ve been out of the house shopping in as long as I can remember, even though we had an hour at my bfs and an hour thereabouts out for lunch. I’m soooo so tired now. I think I am going to have a sleep, I just need to order some things online for Peru and book my yellow fever vaccination, also I feel thirsty because when I’m out and about I don’t drink as much as when I’m in the house, due to not always being near a loo, so I’m still finishing off my litre bottle that I filled this morning. That’s much less fluid than I usually drink, but I had a pint of water at my bfs and a glass with lunch so I’ve probably had just over 1 litre altogether. But usually I’d have had more like 2 and a half by now, so that could be adding to my fatigue- I find the more water I drink, the more energy I have- the trouble is I also have an overactive bladder so most of the time I don’t even drink as much as I’d like to as I get fed up of having to get up to go to the loo and interrupt whatever I’m doing!

So, I’m going to look for my wicking T-shirts now and book my next vaccination.

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I went over to my bfs this evening and we were each eating separate meals, so we were standing at the gas hob together cooking. I chopped up his onion and mushrooms for him too. All this standing stuff felt so great. Something so simple, even mundane, as standing chopping veggies and stirring rice and it was so meaningful to me because I can now do it without feeling just awful.

I told my bf I’d changed meds and he said “I noticed you were standing up for longer/more last time I saw you- but you weren’t on the tablets then,” (but actually I was, I just hadn’t said because I wanted to give it a few days to make sure I felt good before I made a big song and dance about woo hooo my new tablets!) so I replied “Actually I was,” and he said “I thought it was strange, but I didn’t say anything. Coz normally you’d have been doing this” (he swayed from side to side, one leg to another) “but you weren’t and I thought- hmmm- that’s strange!”

He did go on to say not to ‘overdo it’ because it’s only early days yet. Ahhh. 🙂

I also had 3/4 of my injections today. I declined the yellow fever because I wanted to check and make sure I needed it as it’s SIXTY POUNDS!!! I checked, and yes, I need it. So I’ll have to get that booked asap. But at the moment I’m all injectioned out, as both my arms hurt, particularly my right which had 2 hepatitis injections in it. I hate injections, the muscular soreness and pain after them is not only unpleasant, it makes me feel a bit funny and queasy.

I got GREAT news about my flights to Peru though- it’s from one KLM to another (UK-Amsterdam then Amsterdam-Lima) so we don’t have to retrieve our suitcases- they will go right on to the next plane! So that’s a “weight off my mind” (haha) knowing I won’t have to be wheeling that about the busy airport. 🙂

I’m getting excited about it now because I am feeling so much better on ivabradine, it just feels like everything is falling into place! My bf said he wishes I wasn’t going as he’ll miss me, but I’m really glad I am going because I feel I need to have this one adventure before I get “settled down” into couples-life with him. I think it will really boost my confidence in myself, because ever since getting ill at the age of 19 (when I was supposed to be moving away and gaining my independence and just didn’t, couldn’t), I’ve lacked a lot of confidence in myself. So I get the feeling this trip is going to do me the world of good, and also be a really amazing and wonderful experience. I can hardly wait! 🙂

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It really is NOT a nice day for a white wedding… far, far from it! 😦 It’s raining heavy therefore it is very dull, it’s also cold and WINDY! 😦 booooooo! I have no doubt it will still be the happiest day of A’s life but given that it was sooo nice yesterday, it seems very mean of the weather gods.

I slept well but feel a bit like the cold I had in Scotland is trying to make a re-appearance. I’m a bit bunged in my sinuses and tickly in my nose. I think it’s because I had such a crap week, if ever I have a period of stress or missed sleep, I end up with a cold or sore throat.

Things with my bfs place are getting sorted- our new pine table will be here next week too, so by the weekend following, all the jobs on the place will be DONE!

It’s a really boring morning. I hate days/weather like this. The most exciting things about my morning have been: getting up to answer the phone and my heart rate not even getting TO 1oo. (Usually that takes it to around 120-130) and RUNNING upstairs and it only getting to 105. (Usually climbing the stairs it would be 150 or more, well from when I measured it pre-meds that is). I’m wearing my chest strap and monitor because I’m so fascinated to see how this med it helping already AND even better- it’s doing so without making me feel drugged up!!! 😀 WOO HOOOO! 😀 Honestly, like my friend T said, I don’t even know why they try beta blockers first. This seems far superior to me!

What else can I write about to pass the time…? Well, I wrote a great entry about relationships in my LJ last night, but I can’t remember my own words of wisdom by now, LOL! I was just saying how it’s a learning process and you have to learn to accept someone’s faults as well and if you can live with them. I could have thought to myself ‘my bf can’t handle my condition so I’m going to leave him’ and thrown in the towel but that wouldn’t have been giving him a chance to learn how to handle it! I always believe in giving people chances. Even if he can’t handle it, it doesn’t mean I have to throw in the towel. I handled it by myself for the past 10 years, I also have great friends and a wonderful support network online. I don’t actually NEED to talk to him about it at all. If it’s depressing me I can just say “I’m fed up with my condition today” and leave it at that. He’s the type who’d try to cheer me up and make me laugh somehow and sometimes that’s just what I need, to help me forget about it. I think that’s what he was trying to do, really. Take my focus off of it. I’m sure he didn’t mean ‘don’t talk about it ever’ or that he expected me to bottle it up. I think it was like C was saying, he just doesn’t want to see it change me or make me become a victim of it. So I don’t need to be upset about what he said, even though at the time hearing it made me feel like my world was crashing down around me. He did even say he wanted me to help him help me. He wasn’t meaning about the condition, but just generally for us both to help one another be better people. And in his eyes I’d be a better person if I wasn’t talking about it so much, telling him I’m tired, dizzy, whatever. He was advising me to focus on other things. He said if I feel that way every day, why mention it? Just focus on something else, something positive. And I more than anyone know that’s right because you get what you focus on, so if I’m always focusing on how dizzy and tired I feel, I’ll just notice it more! Okay yeah, sometimes it’s a bit insulting because in his naivete he thinks that “transformational vocabulary” (that’s using less charged words so instead of saying “I’m tired” say “I’m recharging my batteries”) could be enough to stop the fatigue, which is quite ridiculous but I can give it a try, make it a habit, and it could IMPROVE things at least. He wasn’t being mean when advising me this way, in fact the funny thing is, it is EXACTLY the sort of thing I’d say if I was in his shoes! If I’d never experienced chronic illness, chronic fatigue, and didn’t know what it was really like, I’d be all gung ho about trying to help someone change how they think and talk about it so that they didn’t suffer as much.

So really, he is only trying to help. It came across a bit selfish like- “I don’t want to hear it” but really, he most likely meant “I don’t want to hear it all the time, because it drags US down”. He was thinking of us both.

So, I’m okay with it. I feel stronger about it all now, moving onwards and upwards!

Oh, blaaaaarrrrrrrggggghhhh to the weather! It really doesn’t inspire me to put on a pretty dress and shoes. 😦 But I’m sure once I am there and INDOORS it will be enjoyable. And I WON’T be losing any KEYS!!!! lol.

Additional: WOOO HOOOO!!!! How awesome is this, I just did myself some soup for dinner and I was stood up stirring it with a STANDING HEART RATE (yes, I had to emphasize that this was STANDING lol) of 74!!!! SEVENTY FOUR, STANDING!!!!! *\o/* (that’s supposed to be like a cheerleader with pom poms LOL). *\o/*

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Love at first… swallow.

No, don’t think of anything rude… NIGEL I’m lookin at YOU! lol.

Ahhhh I’m in LOVVVVVVVE! I’ve been exhausted today after all the stress I’ve been feeling this week (I hate fighting and even though me and my bf were like, sorting through things sensibly, it was still hurty and stressful) but that aside, I’ve felt wonderful on iva. My body feels like it is at peace and can have a break, finally. I only really got close to this feeling on beta blockers but it wasn’t the same because they also made me feel drugged and sluggish. I have a clear mind so far with this. Calm body, clear mind, such simple pleasures and yet I had truly forgotten how they felt.

Now I can look back and compare pre Iva to post Iva (and I’ve only just started!) I can honestly say that before it, I felt like every day was a constant battle with a raging whirlpool and waves to keep my head above water. Sometimes my head might be well above, but the whirlpool was always there trying to drag me down. Other days I might be swallowing and choking with water as waves batter me and the whirlpool drags me into its murky depths. Day in day out, some form of struggle, never getting to rest, never getting a break.

Since taking iva, I feel like the raging waters have abated and the whirlpool has gone. The waters are calm, leaving me free to just float. And not only that, but to see clearly and think clearly! How can you know who you are and what you want when you’re fighting a constant battle with raging waters? It was impossible! No wonder I lost my self confidence such a great deal. I can even feel sparks of that coming back already, sparks of the ‘old Laura’ pre POTS, pre raging whirlpool.

I’m just floating in the water, calm, at peace, enjoying being ME again. Not drowning, choking, floundering. Just being me, floating. Dreamy.

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IVABRADINE!

I’m on it at last!

I say ‘at last’ because, like a child in a sweety shop, I’ve been like an adult in the pharmacy.*

*This attempt at a pun does not work. I blame having to get up so early.

I just instinctively KNEW that beta blockers and calcium channel blockers would not be my friends (well okay it wasn’t instinct it was knowing what they can do to blood pressure, and mine was already low without that). My preferred meds to try from the start had been florinef (because it helps you retain fluid and raises BP- I thought it might help with my raging constant thirst and it did alleviate it a bit) and Ivabradine (because it lowers your heart rate directly unlike the other meds which do so as a side effect of lowering BP).

I got along okay with florinef- it made a big difference and I would have continued to take it had I not needed these vaccines for Peru. However, the list of side effects it can cause is TERRIFYING and me being the type of person who worries about ‘the long term effects’ of things, I always felt slightly uncomfortable about needing it. I have heard/read that prolonged use can cause your adrenals to pack in and I’ve had enough of my body ‘packing in’ on me without something else going wrong… so I was a little edgy about taking them, but as they made me feel SO much better, I was prepared to live with the perpetual fear in order to feel a better quality of life.

However, now I’ve got an opportunity to try Ivabradine without having to be awkward and say ‘taking florinef works but is scaring me so can I try something else pretty pleeeease?’  If this med helps me and makes my symptoms more stabilised the way florinef did, then I’m all for continuing on with this one and it’s less scary, much shorter list of effects.

2 hours since taking it, my heart rate is hovering around 82. It was 91 before I took my first dose. Not a vast difference but it’s only my first tablet and what matters more is how I FEEL. A heart rate of 80-odd doesn’t feel bad for me at all; since coming off florinef I’ve had some incidents where it’s been over 100 when laying down so 80-odd sitting up feels positively zen! lol.

Does anyone else in the potsy community find that having to get up early makes you dizzier for the rest of the day? I was online booking my appointment at 7.30am to make sure I got in today… and being awake at that time and not getting back to sleep has made me really woozy!

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