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Posts Tagged ‘improvements’

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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More stamina!

Okay, so yesterday I was really tired out after all the shopping, so I did indeed go to bed for a little while. But I also really wanted to tidy my room. It was really sunny and gorgeous so after about an hour in bed, I decided to make a start and just tidy my desk. So I started…

Well, it was like pringles! (“Once you pop you can’t stop!”). Not only did my desk get tidied, but my whole room AND I even did extra things which I would NEVER have ordinarily done- emptied out a treasure chest beside my sofa and got rid of unnecessary stuff in it and repacked it so I could fit my makeup and hair products in it, then unpacked, threw away old, unwanted stuff and re-packed a box under my desk of hair products, deodorants and stuff.

So after the busy day and all that tidying, last night I was REALLLLLLY tired (I didn’t even eat until just before 8pm, but we had been out for that lovely big lunch). I thought I might end up “paying” for it today, but I’m up, it’s rainy (one of the kind of days that usually makes me feel as if I can’t get going) yet I feel pretty okay. Still tired yes, but nowhere near as tired as I would have felt pre-ivabradine. I didn’t think that simply just slowing the heart rate down would also bring so much extra energy. But it has and I’m really chuffed! (Chuffed= very, very pleased indeed). 🙂

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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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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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