Feeds:
Posts
Comments

Posts Tagged ‘bf’

The past couple of days have been interesting!

I had my final reflexology class. Weirdly, after that I always get a really bad headache/migraine. I don’t know whether it’s because sitting in the reclining chair, having someone practice a technique on my feet, then having to swap- means too much laying back, sitting up, standing up for my autonomic nervous system to handle. The weird thing is with these headaches I also get sinus pain. Maybe I’m also allergic to the room!

After class I came over to my bf’s and we had a nice meal which we ate outside on the patio, then chilled out listening to music.

The next day was pretty amazing for me! I walk every weekend with my bf and can manage some serious mileage even with pots, but I always feel like it’s a struggle every step. This day, it wasn’t so much a struggle, everything felt easier- and I even managed to walk up a number of fairly big hills (not so much all that steep but very long, gradual upwards slopes- which  find are sometimes worse than short, extra steep as you’re climbing up for longer). I was quietly ecstatic when we reached the top of the last hill and he was puffing/panting and showing signs of exertion too and I was keeping pace with him! 😀 It didn’t even phase me when we walked to our local pub after this walk (I was tired and achy by the point and sooo ready to eat) only to find they don’t serve food that day, so had to walk all the way back! (Only about a 15 minute walk but after all the hill walking of earlier, it seemed a lot!).

I couldn’t understand why I felt so much fitter, until it occurred to me that maybe it was because I’d had a bit of reflexology. We were being shown techniques that worked all the zones (of the body, through the foot) so I’d pretty much had my whole body worked on. I am now massively tempted to teach my bf how to do it so that every so often he can give me an energy boost, it only takes about 10 minutes to work all the zones in this way and if it was that which made me feel so much fitter, I want more! 🙂

The reason it dawned on me it could be that is that reflexology is reputed to be excellent for circulation. So it makes sense that if my blood was circulating freely and more of it was getting where it needs to be, my ANS wouldn’t have to work so hard to keep things in balance and so some of my ‘old’ natural fitness was able to shine through!

I didn’t even mind when we’d just walked up a long, continuous hill on a very narrow country lane when a tractor appeared on the brow of the hill. The lane was that  narrow we had to turn back and walk all the way down to the bottom again to where it widened, so it could pass! Then back up! Ordinarily, this would have made me lose all will and desire to get to the top of the hill, but I was feeling fit and determined and it was exciting- as me and my bf were exploring a hill we can see from our bungalow and trying to find a certain field we can also see (not easy as we overlook lots of fields, but this one is distinctive due to having a big green container in it!). The reason we wanted to find it is because we wanted to look back at where we live and see if we could pick out our bungalow! I did find our field and bungalows but it was too tricky to pick them out individually. However, now when I sit in the back garden and look across at the hill with the mobile phone masts on top of it, I now feel a real sense of accomplishment that I have climbed that! And when I look across at the houses behind the distinctive field, I feel proud that I have walked there from the hill!

I am tired out today from this and a little concerned that my ankles ache- they never used to after walks but have started to lately- but still, this doesn’t take away the sense of achievement I feel when I look over at that hill and think- I’ve climbed that! And not even a tractor making me have to turn back to let it pass could stop me! 🙂

Advertisements

Read Full Post »

Not long now…

til my exam, so I have been furiously studying today!

I love learning all the A and P stuff, just wish I didn’t have the stress of worrying about remembering it for the exam!

I have been having a bad fatigue day today, the 2-day heatwave we had meant a loss of sleep so I have been very sleepy and very thirsty and weak today, every time I’ve stood up I’ve had to rush whatever I’m doing to sit back down again asap, as I’ve been much more tachycardic and faint than usual for me. However, studying hard took my mind off it to some extent and I felt a little bit like the old Laura, the one who used to get a real buzz and excitement from learning and study. I’ve always loved to learn and one of the biggest frustrations of having pots has been how that has made it harder to focus and concentrate due to the fatigue- I find that a few hours of studying leaves me feeling weak and dizzy as if I’ve been running on a treadmill. However, I’ve managed to push through it as best I can and for the most part enjoyed it.

Funnily enough, I took a little break to watch my favourite TV show- Grey’s Anatomy- and since I’ve been studying this anatomy and physiology, things they say on the show now make sense to me! For example, today during the ‘morbidity and mortality’ meeting, Dr Burke spoke of a patient who died of a CVA. I never knew what a CVA was but after having studied, despite never having seen it abbreviated that way, my brain went- “Oh they mean a cerebro-vascular accident!” ( a stroke in layman’s terms). Then I felt all giddy with myself for understanding ‘doctor speak’ hehehe.

I’m also really excited about starting up my reflexology business when I’ve got my qualification. I keep getting hypnosis clients and thinking- if I can persuade them to try reflexology after I’ve treated them with hypnosis, they might become a regular customer, then pass my details on to a friend or family member- and it will all start building up- which is really exciting! I love helping people, it gives me a real buzz and makes me feel great. I sometimes have this crazy notion of helping people with POTS and ME to lead better lives with reflexology helping reduce their symptoms, and being THE go-to person for treatment so that people travel from all over to come and see me, as not only are my treatments grand but I also understand first hand what it’s like (wow, that wasn’t meant to be so rhymey lol).  Although then I think of the practicalities of people being scattered around the country and our inability to travel long distances- I can’t get to them due to being a potsy myself and they probably can’t get to me- so I regard it as just being fanciful but even if I don’t ever get to help potsies it’s great to help people in general- plus the scope for expansion is great- I’m thinking of doing fertility and maternity reflexology and baby reflexology too.

So, it’s a tiring time and my social life is suffering vastly as I haven’t the time much less the energy for social events, I think some of my less-understanding friends are going to be peeved with me behind my back but I’m not concerned, I’m doing this for myself and my future- true friends will understand that and not take my lack of being sociable lately personally!

One thing I am very much looking forward to with quite girlish giddy excitement is a day trip to the space centre with my partner… it’s quite romantic for us as it’s the place where we went on our first proper ‘date’ and the day we got together 2 years ago- we are going on our anniversary next Monday! It should be a fun day plus a day that’s also filled with happy memories.

I’m not going to the walking group’s summer ball this year 😦 It’s really disappointing, but the venue is in a small semi underground bar and you can’t go outside after 10pm, yet it’s just as expensive as the previous years have been when it was held at nice hotels with posh lawned gardens and grounds. I have decided not to go because I think that with everyone being crammed inside it will just be too noisy and crowded to enjoy, plus it’s not at all like a ball because the venue is just not right. Sad because I look forward to this event all year as I love a good social occasion and a chance to dress up, but this year it’s not for me. I will therefore be saving my pennies for an upcoming holiday with my bf, something I am very much looking forward to as it will be so nice to get away together and relax. 🙂

Read Full Post »

Okay, first of all, I’m tired out today. I went all the way to Newcastle for an appointment with my specialist (who is really lovely) and really I can’t understand why I had to be seen in person. I appreciate her giving me her time very much indeed, but in order to have her time, I have to travel miles and miles on the train and it takes up my whole day! The first time it was necessary as I wasn’t diagnosed so needed to be wired up to monitors and what-not… but this time all we did is talk for a few minutes about how I feel on this latest medication. Don’t get me wrong, I feel VERY privileged that this hospital is so sooo much better than my local one (which was just awful) and that they are thorough with their patients and you get to see the actual consultant (not some registrar like always happens at my local) but really WHY was it necessary for me to go all that way just to say what could be said in a fax or email or over the phone?

Anyways, it’s done now and I just go back in 6 months to talk about a ‘long term plan’.

On the train ride over there, I saw 5 deers! I remember very well the first trip I took there, back in April, undiagnosed and so, so nervous hoping that finally I was going to have my answer as to what was wrong with me. My Mum spotted the deer- a solitary shape alongside a stream. Today, I must have recognised part of the landscape because I started saying “I think this might be round about where we saw the deer, but I bet we don’t see another one.” Mum says “No, it was really early in the morning last time, they probably won’t be around at this time.” I say “Yeah, I bet it was just a one off.” Literally in the next few seconds, I see three sort of laying down but am not sure they are deers and Mum exclaims “There’s one!” and I see she’s pointing to a stood up fawn, just in front of the three laying down ones I could see. Then in the very next field, we both spot an adult one! So it wasn’t a one off after all. I think I may even have seen 2 on the journey home too in a different spot (it’s hard to tell sometimes on a train when you whizz by!). So it’s now my new sort of hobby- seeing how many deers I can spot on the Doncaster-Newcastle line. lol.

Now, you might be wondering about the title of this blog. Well, due to walking a long way yesterday (I’ll get to that) I have been walking with a very stiff leg- this morning I still couldn’t bend my knee (too painful) and when you walk with a leg that won’t bend at the knee, people really don’t half stare at it, like they are checking out if it’s wooden or not. Also, when on trains and sitting at platforms, when you have something that hurts, it’s amazing how many people seem to kick/knock and otherwise jar you in such a way that you wince and IT HURTS EVEN MORE!!!!!

Now, as for why my knee is in this state… well, ever since I learnt to drive I’ve had trouble with chondromalacia on and off.  Driving must flare it up as I didn’t get it to the extent I do since I’ve been a driver. I had a 4 year ‘break’ from driving once and didn’t suffer with chondromalacia- soon as I started driving again- it came back. It is very painful when it happens! It hasn’t happened in a while despite me driving as I managed to strengthen my thigh muscles after physio, plus I joined a walking group which may also have strengthened my muscles and thus helped my joint to be in a better alignment… but I have to keep up my walking it seems otherwise- hello square one. And lately, because of doing the new place up with bf, I haven’t been walking much or far. Plus, this particular weekend I did a lot of driving because I never ever get anhy quality sleep at his place and I was so tired Saturday that I wanted to come home to my own bed, plus he had an early start Sunday morning and I didn’t want to keep him awake with my insomniac fidgeting. So I drove home, and drove over again Sunday. So that was a lot of to-ing and fro-ing in a short space of time… followed by a very long walk!

Now, strangely enough despite having POTS I’ve never fainted nor have I had any real problems walking long distances. In fact this is one of the reasons why, when POTS was first mentioned to me by a friend online as something I should look into as maybe being the reason behind some of my wacky symptoms, I read up about it and thought- that can’t be what I have- and didn’t look any further into it for another year or two! But what seems to happen to me is I have the stamina to ‘get through’ things but then my body is worn out afterwards and I’ll either be really tired for days, or weak (often both) or will end up with a sore throat/cold/just generally unwell. So, I used to wonder why I was always tired, and why I caught bugs so easily.

Well, it turns out it was POTS that was causing those things. I only really found out because I did an 11 or 12 mile walk with my bf, finished it off with a terrific migraine aura that nearly blinded me in one eye, and then didn’t recover afterwards. When I say didn’t recover I mean, that set me into a ‘flare’ of symptoms of tachycardia and weakness and I felt so bloody awful I finally looked into POTS again and measured my own heart rates and discovered they were increasing 40-50bpm from laying to standing and so I sought out a specialist (after seeing a really crappy nasty cardiologist who told me to put weight on and forget about it and that it couldn’t be POTS because it’s not very common and even if it was, there’s not a lot that could be done about it anyway, so why test for it. grrrr!).

Now, one of the problems I’ve had with my bf is how he “doesn’t get” it. I can’t blame him because I don’t either and I’m pretty sure lots of my pots friends will be astounded that I could walk that far and not collapse or something. My bf has often said “but you walked 12 miles with me on no medication and you were fine.”

I told him I’m just really good at hiding how I feel and that’s pretty much true. I was okay on that walk for about half of it but by the end I felt half dead and was half blind. I don’t call that being ‘fine’, nor is being so weak afterwards that it takes you 6 months and 4 different medications to feel back to where you were.

But that’s the good news. Now I’ve found ivabradine I feel back to where I was before that horrible crash- actually even better really, because now I know what I’ve got, what causes my fatigue, and it’s being somewhat controlled- I can do things like long walks without having a nasty huge crash afterwards.

So, apart from my knee hurting me so much that I had to walk 6 miles without bending it (that is really, really hard- especially through long tussocky grass which unfortunately, a lot of the walk was!) which then made my whole leg ache- not to mention the strain on the left leg doing all the work- I had a really great 1o mile walk yesterday, and I didn’t feel tired!

See, despite the fact I can walk without any real problem, it wasn’t as pleasurable for the past year, since I had the crash around November last year (after the long, migraine inducing walk). Not on no tablets, not on beta blockers, not on calcium channel blockers or on florinef.  My bf was getting upset that I wasn’t showing enthusiasm for it anymore, but it’s hard to show enthusiasm for something that makes you feel like every step you take is sucking more oxygen and energy out of you til you feel like you’re going to drown in your own body because even though you’re breathing the air doesn’t seem to be working… and since he switches off mentally if ever I talk about it and also requested me to not talk about it as much, I haven’t been able to explain why, although I CAN walk… and although I enjoy his company and the countryside… it was an endurance and not a pleasure for me.

But NOW! Now I can get the enjoyment from it again! In a way I have experienced before, because there have been times when I’ve been stronger and had energy, but even better than that because those times were few and far between and only lasted for a short distance. Now I can be out walking for hours and not feel like I am pushing my body through some kind of endurance marathon. I can enjoy the nature, the scenery- I even talked whilst walking up a little hill!

So, 6 months since I was diagnosed and almost a year since I had “The Crash” I can FINALLY say… I am doing much, much better! 🙂 And it was really great to see how happy it made my bf, that I was out there actually ENJOYING walking with him again. 🙂 Even though we’ve had some ups and downs, even though he finds it hard to understand and to really listen and learn how my condition truly affects me, he’s stuck by me through the worst of it, been patient with me and not complained when I’ve lain in bed til noon or gone to bed for naps in the afternoon, held me when I sobbed myself silly because I felt useless and scared I’d never be able to work a job, and told me not to worry that he’d ever leave me because it doesn’t change how he feels about me… so it really is fantastic to be able to enjoy walking together again and see how happy and cheerful it makes him to have me out there with him, enjoying that. 🙂

Read Full Post »

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! 🙂

Read Full Post »

Weird dream…

I am getting signs from the universe to improve my diet. (I’m a big believer in ‘signs’). First of all, I ate cheesecake at the wedding and ended up with pain and nausea for 3 days afterwards. My tummy still doesn’t feel “back to normal”- every time I eat something, it feels like it’s having a hard time digesting it.

So, I thought to myself, really- it’s not worth it. So I was already thinking of improving my diet. I also added in almonds for a snack as I read somewhere that they have a lot of minerals in them that’s good for potsies, and I started eating sardines.

Then, my bf started talking to me about a book he’s read called ‘fit for life’. All about eating healthy. He wants me to borrow it after he’s read it again. One of the things it recommends is not letting anything except fruit past your lips before 12 noon. So I’m going to try that. My bf was sweet too as he said ‘that should help you with your dehydration as you’ll also be getting water from the fruit.’ 🙂

Then, at the end of my second reflexology course day yesterday, I got my next assignment- which is to research the history of healthy diets and to write about some of the diets that are popular right now- any that interest you.

So, I believe those are all ‘signs’ to lead me in the right direction.

Another thing, I had a strange dream last night that I was sitting at a table with lots of people who were eating KFC in front of me. They were all gnawing on these chicken drumsticks and saying how delicious they were and my response was “You know what, I don’t care- I know it’s not good for me.” I also dreamt I was eating walnuts, and very strangely this morning my Mum read something out to me from the paper “Eating walnuts can help to reduce stress.” Now, I don’t even LIKE walnuts but I believe it is another sign and so I’m going to get some.

I truly believe that your body will let you know what it needs, in cravings or dreams. And that if you’re to hear an important message, you’ll keep stumbling across it in various ways- e.g. newspaper articles, overheard snippets of conversation, things on the radio, things people post or write on facebook… etc. So as lately I keep seeing/reading/hearing messages about healthy eating, AND also dreaming about foods I wouldn’t consciously choose to eat like walnuts, I believe I need to start taking more care about what I put into my body. So I’m starting today and I just ate a delicious red, crunchy English apple for breakfast. 🙂

Read Full Post »

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/*

Read Full Post »

I’ve always walked when things have been bothering me (like when I’m stressed, or need to clear my head or make a tough decision), but since finding out I have POTS, I’ve sometimes made the decision not to at times when I’m really tired, out of fear of it making me feel worse.

Today, I wasn’t having the best day. I’ve been super tired, dizzy and listless. It got me feeling down in the dumps, and frustrated as my specialist has not yet replied to my GP about what medication I can have next as I can’t continue with florinef before and during my upcoming trip to Peru.

In the early evening, I was feeling like some fresh air, but was unsure whether it was a good idea given that I was feeling weak and drained. However, I thought to myself- well, I had POTS for approximately 9 years before it was diagnosed and didn’t know walking could tire me and thus never let it stop me. I’ve pretty much just lived with chronic fatigue but always managed to stay active.  So I figured a walk couldn’t hurt.

Well, after the walk I felt I had MORE energy not less! I think it was helped by the fact my friend called me while I was walking and we had a good chat on the phone, but I was still surprised as I wasn’t expecting to feel as much improvement as I did. It didn’t last that long mind, if anything I feel more weak and shaky now, but even if that’s because of walking it was worth it because it must have released some endorphines or something because I feel in a much better mood and my head is clearer. I’m tired, but the apathy lifted. I’m hoping I feel as clear in the mind tomorrow because I want to start my reflexology coursework!

Additional:

My bf is sweet, I usually stay over Friday and Saturday nights, but as I’ve been feeling so tired on no medication, I felt I needed to stay home this evening to get more rest. Even though he saw me twice during the week and will be seeing me tomorrow, he still called me tonight for a chat. 🙂

Read Full Post »

Older Posts »