Excuse the fact that I talk fast, brain fog out a lot (Great combination! lol) and the camera I use doesn’t produce the greatest quality films.

I’ve also noticed that on my worst days I feel so, so dehydrated despite drinking loads, constantly. Sucks.

The weather isn’t helping either. I’m pretty much ‘iced in’ (sometimes, strangely, even when feeling dizzy and tachy getting out for a short walk actually seems to help) as it’s raining but because it’s freezing, the rain is freezing as it falls and so depositing a layer of ice on the snow that we’ve had the past 13 days.

Got my halter monitor test next week. I really hope I get lucky and get a diagnosis and some treatment that helps with my fatigue and thirst. Those are the symptoms that bother me the most. I can put up with being dizzy, I can even put up with the breathlessness and tachycardia but I would LOVE to have and KEEP some ENERGY.

I could never leave my friends and family but often I consider that living somewhere sunnier would help as the one good day I’ve had recently (actually it was my best day for ages, I spent two hours hoovering [on hands and knees with the tools mind, but still] washed up, put the pots away, did 2 loads of washing and put them on the radiators) was an INCREDIBLY bright day due to clear blue sky and sun reflecting off the snow. I’ve noticed no matter what, I always feel better in sunny weather. So I can only hope that by spring/summer, I’ll be feeling better than I am right now!!

I had a rotten journey home though, ugh. Okay well, it wasn’t actually as bad as I expected it could be- when I first heard the bad news on the plane I wanted to cry because I hate coach journeys but having my phone with me (browsing facebook and texting my aforementioned super boyfriend) was a good distraction AND I discovered I could tuck my legs up and lay down across 2 seats, which wasn’t comfy but if I did it for a few minutes every so often, it actually made me feel more alert and less icky).

Okay so I’ve gone about writing that in a very bad and confusing way- I’m writing it more like how I TALK (going off on tangents all the time) instead of in a way that is easy to follow.

So, let’s back-track. On the plane home, we were informed that we had to be diverted via another airport miles and miles away from where we were parked. So that added on an extra 3 hours (of sitting on a coach) on top of a flight that was 4, and had already been an ordeal for me due to turbulance having us strapped in and I NEEDED A WEE!!! BUT COULD NOT LEAVE MY SEAT!!! So then I got all uncomfortable and panicky the longer this went on and the more desperate I got but THANK GOD they did turn off the seatbelt signs in time for me to make it to the loo!

I apologise if this post is all over the place, I am SUPER tired today.

When we landed and got on the coach, it was another 3 hours to get to the airport and THE COACH DIDN’T HAVE A LOO!!! Which meant I couldn’t actually drink anything, and I HATE not drinking because I am ALWAYS thirsty, even when I drink plentifully! But unfortunately in a situation where there is no toilet I have to take it as the lesser of two evils, because my bladder will only hold small amounts and not for all that long.

Now, you are probably wondering why the heck I am talking about my journey home when from the title of the blog it’s supposedto be about my boyfriend?

Well, I am building up to that! Because, the journey home was so tiring, getting in so much later than scheduled after so much longer sitting around travelling, so I was exhausted. Then the next day I had to unpack, and I stupidly stupidly stupidly had this wacky notion that because (MIRACULOUSLY) I felt all right, I would look for this vanity case to take to BFs with me… yet I couldn’t remember where it was so looking for it involved taking many (heavy) things out of my wardrobes (big boxes and stuff, full of books and videos- heavy and hard to move!!!) and then trying to fit them back in- WHY does stuff that fit perfectly fine BEFORE never fit back in AFTER??!!! and all this stupidity tired me out and I didn’t even find the damn vanity case!!! (so then I actually decided to use one that I was going to give someone else as a Christmas present, which was full of bath products, so now I have a vanity case plus all these bath products I can’t use [coz I am so sensitive to chemicals]).

So then I was tired and the journey had ‘caught up with me’ (delayed fatigue) but I wanted to go to my BFs and see him, so I then had to drive over there and park on an icy street… and then I slept in his bed (which I don’t normally do because I am an insomniac and a fidget with it and always feel bad and uncomfortable like I am disturbing him, but it was the coldest night of the year and I didn’t want to sleep alone and he said he would rather me actually sleep with him even if I kept him awake than me be cold and alone, aww) but actually what I did was lay awake in his bed with my eyes closed TRYING to sleep… and then the next day we went a walk.

All of that added together means that I am verrrrry very very tired now. But, it was worth it. During the walk, at times when I started to feel dizzy or slightly sick, I managed to not be down about it by thinking positive and being grateful that I am fit/well enough to get out into the country and walk through such beautiful scenery, even though compared to what I was used to, there are times when I feel terribly slow and horribly unfit.

I am thankful that I have a couple of days now to rest before I see him again. I do get really tired because when I go over I don’t sleep well, if at all, so that’s tiring, plus we always go out walking which lately has been hard on me (I suspect I’ve always had POTS [if indeed it is POTS I have, or it could be something similar that has symptoms that overlap with POTS I'm still not certain] to some degree but have been lucky that I’ve always been able to walk without finding it a problem, until recently when my symptoms got worse) so I find that I just seem to be living life feeling like I am playing ‘catch up’ all the time… I do something fun (but tiring) and then for the next few days I am resting trying to regain spoons and by the time I do- it’s time for the next fun (but tiring) thing until eventually, I get to a point where I’m so tired I actually don’t wanna do those things anymore because they seem less fun when I’m so tired.

This busy festive period hasn’t been easy on me this year, in a way I am kind of craving a period of time when I DON’T have any social stuff to do. I went on holiday to relax and rest and I’ve come back and been thrown right back into the whirl of ‘doing doing doing’ and so I am if anything, even more tired than when I went! Which sucks because I wanna feel okay. But, despite the fact that I find it difficult because of the fatigue, despite the fact I wish I had more energy, I still love having BF in my life and having these things to do together and hopefully if/when I get a diagnosis I can get some treatment that will make life easier so I can do these things with more energy without getting SO burnt out.

Ugh, I feel as if this post is the most horribly rambly disorganised post I have made ever, but I’m too too tired to change it.

So I’m sad, for the loss of that person who I could have been. If I hadn’t gotten ‘this’. I could have gone out dancing two nights in a row. I could have walked further, maybe even still gone running. I wouldn’t have had pain, depression, anxiety. My ambition wouldn’t have died along with many brain cells, I’d have stayed bright, sharp and clever and gone on to do great things and make a living for myself instead of being dependent on others.

I’m sad, upset and sorry that I didn’t get to be that person.

Now at least, I am aware of my limitations and can begin to mould my life by working around them.

I’m still not sure who to tell and how many to tell. I know I don’t have the diagnosis yet but I don’t feel I need it right now to know, I’ve got dysautonomia. My body is telling me in the pain in my chest, muscles and joints, my pounding heart every time I try to do normal things other than sitting, my exhaustion, my constant thirst, the headaches and the ‘overactive bladder’.

I feel I need the support of my friends but I am afraid also of them treating me differently. I don’t want them to. I want them to know so that they understand why sometimes I might not be able to go out even if I really want to, or why I can’t do the longer or steeper walks. But I don’t want them to ask me if I’m okay all the time or remind me constantly of my limitations by treating me differently.

I am just going to tell my closest friends, those I associate with most, just not sure when.

I know they’ll support me and be kind and good. I suppose once I tell them I can just ask them to treat me as normal, and that I’ll tell them if I need/want ‘help’ in any way.

I feel very sad and emotional today. I think all the stress of the past few weeks with these appointments and tests and keeping it mostly to myself and then finally being heard and getting the referral has taken its toll, on top of already feeling like cack. Now that I ‘know’ finally, what is wrong… I have to face up to it and it’s not easy, even though in many ways it’s a relief to make sense of things. 

It’s so hard to get used to these limitations. See, I know I both want and need a shower, but I don’t feel I have enough energy to stand in there and wash my hair, then dry it after… but I also know that I feel dreadful in the mornings and need to walk to the Drs, so I’m probably better off doing it tonight and then going to bed, and saving doing less tomorrow morning if I can. I really am having to take care of my spoons more lately. (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf)  They seem more few and precious.

But, rather than being sad about the person I’ve lost, didn’t get to be… I am going to make the most of the person I AM. It’s not what life hands us that makes life good or bad, it’s how we deal with it. So I am going to deal with this as positively as I can, being thankful for the many wonderful things I DO have, and the many great people who I am blessed with knowing who make it easier for me when I’m sad, or tired, or just plain fed up; as well as making life fun and enjoyable and bringing me shared happy times!

I’m also going to make sure that I take better care of myself, and my body. No more pushing too hard, trying to be ‘normal’. No more wasting energy on people or things that aren’t worth it. I will fill my life with love and light only, and keep out as much negativity as I can.

You know, pain really is a great teacher. Pain of any kind, physical or emotional. It forces you to realise how many blessings you really do have, when you take the time to notice them. Even when times are tough, when you wonder ‘why me?’ and wish the pains away. You realise in some ways, you’re lucky. You’ve been ‘awakened’. You don’t take things for granted anymore.

I do acknowledge that it’s not always like that. I was sitting on my bedroom floor an hour before, crying with exhaustion and frustration. Would I rather be completely healthy and ‘unawakened’, taking it all for granted? Maybe. But I’m not, so I choose to make the best of this however I can, and if that means being Polly-freakin’-anna, then so be it! If it also means being a misery-guts at times and getting all ‘woe-is-me!’ then so be that too!! I’ll do whatever I can to get by. I just know that I feel better when I force myself (because yes, sometimes I have to FORCE it!) to look on the bright side and find the positives.

I find something really magical in the human spirit that I really love. When I get low, when things get hard and I feel sad, I look out into the world and I see a lot of love out there. It makes me feel better. There are so many good, kind, thoughtful people out there. So much beauty too. The world really is a special place. Being ‘this way’ has made me more compassionate and caring, that’s for sure. There’s a lot of love to have and to give, if you look at the world in the right way. I’m glad I can, and that I do. Because when things get bad and sad, there’s always that little glimmer, that spark, that makes it better again.

And hey, it’s gotten me writing from the heart again too, which feels good and healing.

So, thank you for this life, even with its hardships and limitations. I truly am grateful to be here, experiencing this wonderful world. Thank you, thank you, thank you.

I am not happy about this because it means that I might not be able to get to see my boyfriend before I go away. Just gotta hope it turns to sleet overnight and is washed away by morning.

I feel so crappy today. I made the best of the day so I feel accomplished, but I’m really tired and my stomach hurts. I don’t think I should eat things with wheat in them.

This weather is freaking me out because even if it does clear, it could snow again whilst I’m at my boyfriends, and he lives near some really steep hills and bends, it could be dangerous driving if it were to snow or be icy… so now instead of looking forward to going and seeing him, I’m sad that I might not be able to and scared that even if I can, I might end up having to drive home in scary conditions. I’ll just have to see what the weather is doing tomorrow and what the forecast is. I’m not risking getting stranded or having to drive in treacherous conditions, even though I do want to see him very much.

This is just a bad end to what’s not been the best of days. I woke up exhausted and further tired myself out looking for a present for someone I’d been keeping under my bed*. I haven’t been able to find the things I need today and haven’t had the energy to look, so I’ve felt frustrated. The one thing I have been looking forward to all week was seeing B (Boyfriend- I’m not giving out names in this blog) and now it’s looking like that’s highly unlikely too. *sigh*

But you know, there is a bright side- a very bright side in fact. It’s nice to have someone who cares about me like he does, even if I can’t get over there to see him. I feel it is giving me strength to get through this new battle of symptoms and medical stuff. Also, it’s nice to be going away somewhere warmer. And I have great friends. Most of them don’t know about all this stuff yet, but with time, they might. I haven’t decided who to tell, who not to tell, how many to tell, if there’s anything to tell. (I think there really must be though).

Yes, there’s lots of good in my life and I feel sure that with some rest and recuperation, I’ll shake off this melancholy feeling I have today.

EDIT: LOL!

A friend just pointed out to me that this sentence makes it sound like I was keeping the person under my bed! hahahaha! I did of course mean the PRESENT, but that was a very ambigious sentence. At least it’s given us a laugh!

with so much unlovely WHEAT in it

now I am so tired I can hardly keep my eyes open, but all windy and bloated and reluctant to lay down, although I really WANT to, because I’m soooooooo tired!!!

Also, was very dozy today. Went out for lunch and my Mum couldn’t eat it all, so she had half a sandwich wrapped up for her. I brought it home (she was going back to work) and forgot to take it out of my bag. Then rememered as I was about to go upstairs, so put it on the step to ‘remind’ me to take it into the fridge when I was heading back that way.

When I eventually was heading back that way, I walked right past it.

Yesterday I also completely forgot to wash my pots and take the washing out of the washer like my Mum has asked me to. But worse than that, I didn’t even remember I’d forgotten these things! Usually, I do remember at some point like- oh my gosh- whoops! But I didn’t even realise and wouldn’t have unless my Mum had told me today.

I really hope by the time I live with my boyfriend if that happens that I don’t do things like this as he’s super duper tidy and organised and it would not bode well… :/

I count myself lucky because I manage to stay on my feet, but now I know about POTS and can understand my symptoms, it’s not as scary somehow… by the time I got to the cafe I was tired out but there’s no wonder because I’d been on my feet for so long and my heart was working harder. Things that used to be a mystery (such as my daily episodes of fatigue) make sense now.

On the way home I tried to walk fast because I saw the Royal Mail van driving ahead of me on a road adjacent to mine and I am expecting parcels!* I didn’t want to miss it but I found myself getting a burning feeling in my chest and I remember that feeling from when I used to run long distance. RUN LONG DISTANCE! I checked out my heart rate watch at this point and it was beating 177bpm. I wasn’t even walking my fastest speed either.

Seeing these things happening actually makes me feel BETTER though, because bearing in mind I’ve been ill for the past 8 years but not known what was wrong… and been told I’m ‘just stressed’ or that I have ‘just got PMS’ I had started to think that there was nothing I could do about it.

Now, maybe there IS! So, I am looking forward to seeing my cardiologist. I might FINALLY after so many years of searching, be on the verge of discovering what’s been wrong… I knew it all along. I KNEW my body didn’t feel ‘right’ or the way I knew it could, or should. I just didn’t know WHY.

* When I got round the corner to my house, there was a random white van pulled up outside, and as I walked up the drive, the man got out with parcels for me! So I didn’t miss them after all, thankfully. If seeing the red van hadn’t made me speed up for that short ‘burst’ before it got too much and I slowed again, I’d have missed my parcels!

She looked at my ‘poor man’s tilt table’ test results and I also gave her a brief print out of some info on POTS and said I thought it might be that… she was very kind and started explaining it to me, I feigned ignorance so as not to seem like a ‘know-it-all’ who’s been doing copious internet ‘research’ for the past 2 weeks, LOL.

She was great though and said I’d need to see ‘an expert’ and so referred me to a local cardiologist. She said at that department they might issue me with a 24 hour heart monitor or even a 7 day one!

I don’t know if this guy will know about POTS or if there will be opportunity for a tilt table test, but at least I am finally getting SOMEWHERE…

Still, I’m not going to let it put me off. It’s been normal* TWICE (once yesterday evening, then again this morning for some bizarre reason) and potsy the rest of the time so I still want the test. Being up this early does NOT agree with me…

Also, even though I don’t get the really high numbers a lot of people with POTS get, I’m pretty sure that a heart rate of 160bpm when walking at a reasonably gentle pace isn’t normal for someone who IS fit and DOES exercise to some degree…

It’s weird though, I feel dizzier than usual this morning and yet my hr went up from 75 to 108 but then fell pretty quickly down to 90. Strange.

I hope I get the results I want today- I want to be taken seriously, not fobbed off, and I want the Dr to look into places that will have the facility to tilt table test me and give me a password so I can get myself on the choose and book system and get an appointment. Eek, I’m a bit scared!

*When I say ‘normal’ it still went up by 30bpm this morning, but just fell again fast, I’m not sure whether that IS entirely ‘normal’ or not… last night I think it was normal as it went from 75 to 95 then hovered around 85. I had drank lots of water and had a salty dinner though, praps that’s why… an hour later it got up above 120 again and was hovering around 107-117. (from 80).

In my life right now, I am the happiest I have been in years. I have wonderful friends, lots of fun, happy times and a lovely boyfriend.

The purpose of this blog though is not really to talk about my life in general, I am a fairly private person so am not keen for that to be on display all over the web (not that blogger is ‘all over’ the web or anything, but anyone can access it and my mind is prone to paranoia at times…) . However, what I am finding myself wanting to write about is stuff that I either don’t talk about with people because it’s not really everyday conversation or stuff people really want to hear… OR I talk too much about because I may be on the verge of an epiphany that makes sense of the past 8 years of nonsense…

Now, at this point I feel I am rambling and I also feel I do need to delve into the past just a little.

8 years ago, I started university, picked up a virus and my life changed a lot. I’d always been happy, fit and active. I became unhappy, unfit and inactive. Various new symptoms cropped up and the list grew ever more… varied. I’m not about to go into this list just as yet.

Frustrated with my health, I joined a few forums where I talked about it with sufferers of chronic illness- and it was on such a forum that someone mentioned to me that my symptoms may be down to POTS aka ‘postural orthostatic tachycardia syndrome’.

Now, initially when I read the description she linked me to- I dismissed it. I didn’t think it could relate to me because I’d never had any problem with standing, never fainted or anything like that.

For some reason, maybe guidance from above who knows, recently I decided to re-read the site and look into it PROPERLY. And lo and behold, when I looked past the initial orthostatic intolerance type symptoms, I discovered a whole host of symptoms of which I DO have… and I felt like I was already having an epiphany. Like this syndrome could explain so many of the seemingly unrelated things I’ve ‘suffered’ with on and off (or on continuously, depending on the symptom) for the past 8 years…

So now I have begun a journey. It began by monitering by BP and HR with a BP monitor. Then visiting the Dr to tell her my HR was elevated and I’d been feeling breathless and shaky. Then having blood tests and an ECG. Then getting a continuous HR monitor with chest strap and watch and doing a week of ‘poor man’s tilt table tests’ and fretting and wondering and waiting…

My HR has often increased by 30 or more beats per minute from supine to standing. I’d say 9 times out of 10. It doesn’t tend to stay very highly elevated, hovers around 100-112 most of the time, but a few times it’s stayed above 120. I think I have enough ‘evidence’ to warrant a clinical tilt table test anyways. Whether or not it will conclusively show POTS or not, I’m yet to discover…

I am to visit the Dr in the morning for blood test results and shall be bringing up my heart rate discoveries and politely requesting a referral to someone who can do me a tilt table test, while my heart probably goes into tachycardia just sitting there hoping for the outcome I desire…

It’s the beginning of a journey. Of waiting. Of patience. Of hope. Of determination.