POTS demons.

It’s funny (not as in haha, how hilarious, but as in interesting) how even the smallest of disagreements has underlying demons lurking underneath- striking out, making us act in seemingly irrational ways.

During a phone conversation earlier, boyfriend told me he’d thrown away my bread that had been in the freezer. I “overreacted”- saying oh boooo, that bread is expensive, I wanted to take it out of the freezer on moving day and make sandwiches! Booo hoo hoooo!
He then “overreacted” back, getting very irate and saying a lot more words to get HIS point across than I used (I’m more succinct in the verbal word so it seems- not in the written). Words like how he is having to do this all alone and it’s very stressful and he didn’t want the bread there because he couldn’t be bothered with it (ouch- out claws another demon of mine) and that the bread was stressing him out and he’s doing this on his own because I can’t help etc etc ad nauseum.

I went all dizzy and weak (sometimes that happens when I’m tired/when something triggers off some unwanted emotion- it’s like my body just shuts down and goes ERROR:00513- CAN’T HANDLE- MUST SHUT DOWN and just let him go on and on saying ‘okay’ and ‘mmm hmmm’ in a little, weak voice. Strangely though, this is a better way of dealing with things (it doesn’t happen by choice, it just happens and I wish I could do it more often because it’s better than the alternative, which I am about to describe) than getting irate and ranting back. Because once he’d run out of steam, he wanted to smooth things over. I didn’t have any steam to get worked up or argue my point back, so what could have blown up into a really stupid disagreement (those demons like to pour kerosene on the fire of disagreements!) about something seemingly insignificant, didn’t.

Afterwards though, I was thinking about things, and my demons were still clawing at me. First, the demons of being hurt that boyfriend didn’t ASK me if I WANTED the bread but just CHUCKED IT OUT with BRUTAL DISREGARD for my FEELINGS (yes I’m using hyperbole here but there’s a grain of truth in this- why didn’t he just ask? Do my things mean so little? Why did he have such a vendetta against my bread that it had to be gone RIGHT NOW because it was so ‘stressing him out’? What about my sandwiches on moving day? My little imaginary picnic? No no no, what about ME? My feelings?) See what I mean about the demons?

Then there were the POTSdemons. (There are a great many of those- they are all the things that pretty much every human being feels to some degree that POTS likes to exacerbate- I.e. pour kerosene on!). I’d been ‘helping’ boyfriend by staying out of the way while he’s been packing. Just minding my own business, getting on with my own things, ‘leaving him to it’. I was doing this merrily and obliviously, thanking that I’d read ‘men are from mars…’ and other such books that tell us ladies that ‘men like to be in control’ and ‘don’t offer help unless they ask for it, or they’ll feel emasculated’ etc etc. I thought I was helping boyfriend feel awesomely masculine and like the solver of all packing related traumas and problems by not being there.

But when I recognised the demons under what he was saying on the phone, I realised he’s been seeing my ‘support’ as the total opposite- CRAPPYGIRLFRIENDNEGLECT,zomg!!!! So then my demons of horror, guilt and shame started throwing a party. For the biggest of the POTSdemons- a surprise to celebrate no longer being suppressed- a coming into consciousness party for- FEELING USELESSNESS.

Yes that’s right boys and girls, demons and fairies- thanks to POTS I feel USELESS! I can’t lift boxes. I can’t go up and downstairs many times fetching and carrying things. I had a bad, potsy week last week so didn’t have the energy to drive over and offer support in person. And because deep down I FELT USELESS anyway, I didn’t even think that I would be welcome ‘in person’. That, like boyfriend said ‘just having you sitting there as emotional support while I packed would be nice’ (oh guilt, do stop kicking my stomach!). When I envisaged such a thing momentarily weeks earlier, I could just see me as this awkward, ungainly, clumsy thing getting in the way, feeling useless and thus being even more clumsy than useful*, and boyfriend getting mad at me (sometimes I forget-okay, often I forget- that he’s not at all like my Dad) and me feeling even more useless and like a blob of humanoid jelly just bibbling around doing nothing useful but just being all blibby, bibbly and blobby.

*Here is a prime example of the uselessness demon clawing out- that there is an absolutely unintentional Freudian slip! I meant to type USUAL!!

I thought I was doing the much better thing keeping out of the way and making boyfriend feel like superman solving all the problems, doing all the leg-work, packing up all the boxes, standing back looking pleased and proud and telling everyone “I did this all by myself.” (Cue cheer and slaps on the back).

But no, it was more like “I’m doing this all alone, it’s stressful.”

So, I’ve obviously been completely delusional thanks to my POTSdemons and a simple little 2 minute diatribe about frozen bread getting chucked out without guilt or remorse led to the epiphany on my behalf that I FEEL USELESS and boyfriend feels ALONE AND STRESSED!

Oh no, oh woe, poor us!!!

So, cue overly long, rambly and emotional apologetic text, full of drama and angst, the demon underneath it all whimpering in the corner just crying out for forgiveness. (I’ve been sick today with stomach flu and hardly got sleep last night thanks to the pain- and I get overly emotional and dramatic when tired).

Boyfriend’s text back was ‘don’t worry, get well soon.’ (plus smile and kiss).

It makes it all quite comical, when you quash the demons and true love conquers all.

I do still feel useless though… I think that is one demon that I’ve got a lot of battling to do with… it’s a POTS thing fo’sure, it’s soooo hard to feel useful when half the time you can’t even get your own body to do simple things that you want it to do for yourself, let alone to ‘help’ anyone else. And then you feel like you’re blaming POTS for everything and people will think you’re this big, stupid, bimbling, wimpy hypochondriac lazy loser person who always says (insert appropriate whiney tone) “I can’t.” But that’s a whole other post/series of posts/lifetime of posts.

To some this would seem ludicrous...

But I KNOW my potsy and spoony friends will 'get it'.

On Saturday (the day of the ball) I was having a pretty blah day. I woke up feeling really tired and 'out of it' and knew getting out of bed was going to be hard on my body. I was also pissed off because I'd been feeling really good for about a week, then woke up feeling like THAT the day of my 'big event of the year'! I took a shower (to get it out of the way because it tends to wipe me out even when I feel good), had lunch and went back to bed until it was time to get ready.

Then I had to drive to my bfs, and I was coming up the drive in my tight black dress, with my shiny just washed hair with added SHINE SERUM and my eye makeup done beautifully (I rarely bother with makeup so when I do, I make it really emphasise my eyes) and the very first thing my bf said to me was:

"You look tired."

and inside my reactions was WOOO HOOOOOOOOOOOOO! YIPPEEEEEEEEEEEEEEEEEEEEE!!! HALLELUJAH!!!!! Bells ringing, birdies tweeting, little men jumping in the air with fists of triumph YESSSSSSSS!!!

Because I thought to myself, FINALLY! Someone can SEE I am having a bad day! Someone can SEE THROUGH THE VENEER and recognise how I really feel!

I think what it was was my demeanour more than anything, because I was feeling weak and dizzy and was tottering in heels trying to carry a heavy bag, so I was moving really slowwwly and carefully, and my bf said I looked 'really wary' walking up the drive.

Still, it's only ever been my Mum and my friend M. who have ever recognised that I don't look so good (M recognised it when we went out at Christmas- she told me I looked really tired and she said- in her exuberant, foreign accented style- I never seen you look this way, so tired! Ahh, she was really worried and mother hen-ish that night lol). M also noticed I was looking better at the ball (despite it being a bad day, I'm still loads better than I was a few months ago) and she pointed out that my eyes didn't have the dark circles under them anymore.

My bf however likes to take the credit (jokingly) for many of my symptoms- my racing heart is because I'm excited to see him, my dizziness is because I'm positively swooning, and my rosy cheeks (that I now have since taking florinef and generally doing better) are because I'm GETTING SOME!

hehehe, he makes me laugh.

But only a potsy or spoony will really understand that feeling of elation I had when he told me I looked tired. It was better than if he'd told me I looked stunningly fabulous and made him want to ravish me.

"You look tired". Well I'd have never expected THOSE '3 little words' to be the words I was most excited to hear from him. ;)

:D Happy Things

My bf's moving date has been brought forward one week! So, I'll be with him for the exciting day and the first weekend in the new place (that we chose together!). So so happy and excited. A week on Friday!!

I've told him I won't be able to help physically (he still overestimates what I am capable of and thought I'd be okay to carry boxes to the van, I did a little practice just holding a box and it sent my heart rate up so much that my legs and arms went weak, so I had to tell him it's too much for me. Stupid pots, because I was actually very strong before it, but I don't want to make myself ill on moving day and not enjoy our first weekend there!). He told me he's got the 'muscles' to help him (some friends he's roped in) and so long as I am there to share the special day it is okay.

So not sure exactly how I can help, maybe I will be able to make tea and provide snacks. It will probably still be tiring for me coz it's going to involve mostly standing as there'll be nothing to sit on! But I figure I'll be okay if I keep moving somehow, since I can walk for a few hours. I'll have to just pace about and make sure everything is running smoothly!

Another thing I am very happy about it I got back on the dance-floor! Here's a little anecdote- when I first heard about POTS online (a couple of people told me to look into it based on my symptoms) I thought I couldn't possibly have it because I didn't have any problems standing- and one of my favourite things has always been to 'dance the night away' on a dance floor and I never feel tired whilst doing so. However, what I hadn't realised was that my fatigue for the next couple of days wasn't normal. I thought everyone felt that way, and put it down to the exertion and the late night. I didn't realise it was because I was also potsy on top of that!

So, when I had this recent flare up it freaked me out because for the first time ever, I did feel tired and weak when dancing. So I am really, really ECSTATIC that I've been able to do that again and feel okay. Florinef is turning out to be a god-send because, although I still feel tired, I don't get the same degree of fatigue and am able to do much, much more before feeling weak.

Another great thing is my best friend from the walking group, M, who has been down in the dumps the past few months due to a bad ankle injury requiring a big surgery, was out with me in much better spirits and we danced together and had great fun. When her ankle couldn't take it anymore and I was getting tired too, we put our chairs on the dance floor (at the edge) and danced with our upper bodies. What I loved about that was having a friend with me crazy enough to do that. So many people take life too seriously and are worried about doing things that are "embarrassing". To us, it wasn't embarrassing at all but just great fun! We got some funny looks but that's all part of the fun of not taking yourself or life too seriously!

So yeah, both of us made a great comeback. :) This makes me happy, as I'd hardly seen her lately because she's been away a lot and times when I've made myself go out to walking group events, she hasn't, times when she has, I haven't- we've kept missing one another and I hadn't been well enough to drive and see her up until recently. So it was great to get back together Friday for the chinese and Saturday at the ball. :) She even said to me she had worried that maybe we weren't going to remain friends! I explained how it was only because of the pots that I hadn't been over to see her and not because I didn't want to. We'd stayed in touch via facebook and phone messages, I hadn't realised that she'd been worried about that. But now she knows and things are looking up, so we're probably going to be hanging out more often from now on. Yay! :)

So, the rest of the Summer is looking good!

:/

I keep finding phone numbers and names of clients on random bits of paper or in the back pages of my diary, and I can't remember calling them.

This means that I either a) Forgot to call them (bad- losing customers due to brain fog is never good!) or b) I forgot that I have called them and have maybe even seen them, but can't remember (not as bad in that it means I didn't lose custom but bad because I usually see people 5 times, how can I forget seeing someone 5 times?!)

Dear oh dear, I am going to have to help myself out and make sure to be more ORGANISED because if I can't remember these things (and evidently I can't) I need to make sure I write them down in my diary and put CALL THIS PERSON and then TICK IT OFF when I've done it!!!

Brilliant Weekend

Since Friday, actually. I picked my friend M. up from the local shopping mall and, as it was a nice day, rather than having lunch there, I brought her back here- stopping off first at a little, local garden to show her the baby swallows in their nest. :) We then chilled out in the garden, ate cookies, chatted and then had chinese for tea. It was a lovely afternoon. I drove her home and then spent a nice, quiet evening watching telly with my Mum as my Dad was out.

Saturday, for some reason I woke up feeling very drained and tired. I suppose driving to a mall and back and then through Sheffield and back is tiring for a potsy but I'd been doing SO well so I was really fed up about it. Well, more pissed off because I felt like Friday was a chilled, relaxed day and yet I still suffered potsyness after it- but I just rested all day- went back to bed after lunch and dozed- it was too hot to fall asleep, but I think taking it really easy helped, because I had a really good time at the ball.

I went to my bfs first and he made me laugh saying he could hardly look at me in my dress because he wanted to take it off and couldn't (as I'd got ready at home and arrived just in time to have a little chat before he dropped me off- he didn't go himself). He dropped me off and I then had great fun eating and dancing- I tried a little wine but found 1. I didn't really like it and 2. It was just giving me a headache so it wasn't even worth drinking it- I stuck with my water!

I had enough energy to dance to a number of songs, I felt much, much better than I have in a LONG time! :D Towards the end of the night, me and my best friend put our chairs on the dance-floor (she has an ankle injury and can't stand for long periods either) and did seated dancing- it was really fun because we still got to be part of all the fun, but without having to keep standing!

Today I had a nice lay in and then me and my bf picked what wardrobes we're having in the new place, had lunch, went a little walk and found our new local (I'm excited because it does discos on a Saturday night, so if I make some new local girly friends I can do more dancing- not every week by no means but every so often, it's great to have the option!) then came back to watch the golf on telly and after tea we picked what fire we're going to have in the new place. :) We're SOOOO excited, I can't wait!!!!

I'm shattered now and catching his cold, booo! But it was a brilliant weekend and I am SO pleased with how much better I feel now on florinef. Nothing is perfect and pots still affects me, but I have a lot more energy and "standing power" (i.e. I can stand for longer without feeling weak) so it allows me to do more things. Plus, getting up in the morning and not feeling terrible like I'd gotten used to feeling (and to say I just thought I "wasn't a morning person") is wonderful! I am really thrilled- all in all, things couldn't be better, but I do believe they are going to become better yet- when I get a job, move in with my bf, and make new local friends and have even more fun and enjoyment in my life! :)

I got a blog award!

Another kind blogger who found my blog has passed on a blog award to me. In all the crazyness with worrying about my boyfriend and his Mum last week, and my 'career' this week, I'd forgotten to post about it!

I'll have to edit this later with further details as I'm waiting for a client who should be here any moment.

I applied for the job at university! :) I feel happy that I'm looking into other avenues whilst still planning on keeping up my hypnotherapy and adding to my repertoire of other holistic therapies. I feel like I have made the 'right' decision.

Applying for a job!!!!

I found a job I liked the sound of, so I'm applying.

It's a little too late in the day for me to fill out my statement 'selling myself' to be picked for an interview, and I have a really busy day tomorrow, so hopefully I'll be clear enough in the head to do it Friday morning!

It's quite exciting!

The funny thing is, it's to be part of the careers service team at the university. That's funny because I have never really decided on a career for myself, never really known what to do... but it would be rather nice if I could help others make their minds up and save them the hassle and stress (that I've experienced first hand myself) of not knowing what to do with their lives!

I still want to be a holistic therapist and keep expanding the treatments I offer, so I'm going to do the herbalism course and probably a reflexology course next September (not this September as I miss three of the weekends due to a friends wedding and being in Peru, and it's very strict that you must attend all the days!) and then I can look into the health and therapy clinic near my new home with my bf, and maybe start building up a clientele there. That's depending on how working full time goes- if I enjoy that I might not want to work at the clinic! It's all a case of just embarking on a different path, and I don't know where it will take me... but I have to trust that it will all work out okay.

I do feel more positive lately. And I've now got the childcare qualification as backup if I do decide to go into that in the future. And the beauty of getting a 'different kind of job' than what I was considering by potentially getting into teaching is that it shouldn't be stressful/detrimental to my health- it should be the type of work I can leave at work- and thus I should be able to keep up my hypnotherapy practice in the evenings, from our new home.

I'd be happy so long as I got a job that was relatively interesting with nice people/the opportunity to forge new friendships and have a laugh at work! I miss the social aspect of working, I really enjoyed that when I worked in the nursery last Summer. So if I get nice work colleagues and a reasonably interesting job role, I'll be happy. Even though I love children, the more I consider my feelings and my needs, the more I believe that teaching wouldn't have made me happy after all. My instincts were probably right back in 2007 when I turned down my interview for a PGCE. If I miss children, I could do an evening with Brownies or Rainbows, apparently they are desperate for volunteers for that!

So, maybe now everything is coming together and I'm finally finding my way. :-)

Clearer Mind = Change of heart...

Okay, so I said I wanted to apply for the graduate teacher program.

I emailed and asked for a form. Haven't had a reply.

My Mum is a teacher, one of her best friends who I have a lot of contact with is, my Dad is a teacher, one of my best friends is.

They are all nearly always very stressed and tired from the job.

I had big fears and doubts as to my ability to do it but I kept quashing them because I love children so much.

But you know what, I'm not really sure my heart is 100% in it. It would be if education hadn't changed so much, but these days (I know from my Mum) it's all about targets and statistics and staff getting bossed about to meet these targets/statistics so much that the enjoyment of actually being with the children is spoiled by the stress of the paperwork.

The level of fatigue I feel just doing my easy part time work from home is still very high. I don't want to do something that's going to make me more ill.

I think maybe I have to accept that I'm not cut out for it. I suffer with sore throats frequently so can't talk loud or raise my voice. I get overwhelmed/overstimulated easily so how I'd cope in a busy classroom environment with those two problems is beyond me, not to mention the fact that since I became ill, I don't want responsibility or stress...

I think if I tried to do teaching just because I love children and ignored all those other factors, I could be setting myself up to fail, setting myself up to be ill.

Also, I want to have a life outside of my job. I believe if I were to be a teacher, I'd come home exhausted, and the weekend walks would be gone.

Plus, I still get terribly brain foggy and that, above all the physical limitations, scares me silly because I could not be responsible for teaching children when a lot of the time I can't function for myself thanks to that.

So, I am coming to the conclusion that applying for the GTP is probably not for me.

There are other ways I can indulge in my love for helping children. I could do some voluntary work, such as be a helper at Rainbows or Brownies.

As for a job, well this is where I get stuck. I just don't know what to do. I'm THINKING that I'll get a simple admin job where I'd be sitting all day in an office. I'm almost loathe to say that because I could never see myself doing that, I wanted a job that would challenge and interest me BUT... my priorities are changing because of POTS and even though that does suck, I'm just thankful I have the option of working at all.

I figured if I had some kind of admin job, I could leave work at work and still have a life. Enjoy my weekends, go on holidays, not just be worn out all the time. I could also keep my finger in my holistic therapy pie. That's where my true passions lie. I love doing my hypnotherapy and would like to keep it up. When I move to the new area with my bf next year, it'll be an opportunity to get new clients and contacts. I might go to work in a clinic one day a week or something and see if I can build up a good reputation. I'd like to do the distance learning course in herbalism so I can also add that to it. There's so many courses in holistic therapy like naturopathy and chinese medicine that I'd be interested in taking to keep expanding my practice. I love the one-to-oneness of working in this way, helping people improve their lives. If I was a teacher, I wouldn't have the time or energy for it.

So, my new plan is to find a job somewhere, perhaps in a university or a hospital, doing admin or research or something (I'm vague because I've never had a job like this so don't really know what's out there or what it entails!) to get a regular decent wage coming in... and see if I can take one day per week off to work in a clinic doing my hypnotherapy/herbalism. And also do hypnotherapy from home too.

I think, even though I'd miss children, I'd be happier and HEALTHIER doing that. I've seen how terribly stressed and tired my Mum gets and she doesn't even have any health problems. I couldn't deal with it. It would make me ill. I don't think even my THROAT could take it. As soon as I'm a little run down from maybe one bad night, it hurts, gets dry and sore... I don't have a 'teachers voice' in me!

The strange thing is, since thinking this to myself, I feel... kind of peaceful. A little bit sad, but more at peace- it feels more right. I'm also scared because I don't know what kind of job I want or how to get it or if I can... but I'll just keep looking- I'm not wanting to start anything til after I've been to Peru ideally. Unless I saw something that sounded just right. I can just keep looking for ideas.

And, while I'm not doing anything these next few months, I can send off for the herbalism course and do that! It's exciting and interesting and who knows, I might be able to do some work as a herbalist at the end of it. There's a therapy clinic near my bfs (and what's also going to be my) new home. I'd just have to rent a room out. Maybe could just have one afternoon off work or something.

I just see possibilities in keeping that going. I enjoy helping people with therapy and I'm really good at it. I think I could end up crashing and burning as a teacher because it would be so demanding for me.

Maybe it's getting some of my health and energy back thanks to florinef that's helped me think more rationally and realise how precious that is and how I don't want to waste it doing something that I'm not really capable of. It's a hard thing to say to myself, to admit to myself, but I think it's healthy to recognise my limitations and not try to push the boundaries all the time just because I see my health as "holding me back". Maybe it isn't holding me back, but forcing me to look in a different direction, towards new possibilities I'd never have considered without it making me do so. And that doesn't mean those possibilities are worse, or lesser.

So, I reckon I'm going to send off for the herbalism course and get on with doing that, and in the meantime keep a lookout for some kind of job- I'm looking a lot on the local university pages as they have some that look as though they could be interesting. Fingers crossed I can find something I'll enjoy- it's a whole new world to me so I have no idea what to really look for or expect! I think with the teaching I was thinking 'better the devil you know' but the more I've thought about it, and listened to my fear not as though it's an enemy but this time maybe a sensible thing, I've come to the conclusion that it could indeed have been 'the devil' for me and just ruined any gains in my health that I've made these past few years since getting ill at uni. Which is not something I want to do to myself.

So, I'll continue to be a "holistic therapist" and keep adding to my repertoire. And I'll look for something else I can also do that's simple and pays for the bills. Then I can still have energy to enjoy fun times with friends and weekend walks with my boyfriend. Basically, have a nice, simple life that's as stress free and kind to my health as possible.

A week on florinef...

My first week on florinef, I was exhausted and downhearted. I think everything was just getting to me, the fact my symptoms this year have been so much worse (despite having had POTS for the past 9 years, because it took me that long to find out what it was) was worrying me that I was going downhill, once you let fear in, you just start to suffer more, which is why I like Nikki's favourite quote "He who is afraid to suffer suffers already from his fear." I want to suffer as less as possible so I'm trying to just get on with life and not be afraid.

I don't think I am going downhill though, I just have different symptoms that are more noticeable. I had symptoms of fatigue for years, used to have nausea but thankfully that one went away, used to have severe pelvic pain, that one went away- so really it's just a change of symptoms, and if anything I'm much better than I was, the only thing is I am also much busier than I was, so perhaps that's why I am feeling as if I'm not improving, because I'm doing more and thus feeling tired a lot, but at least it's because I've been doing things and not like it was in the early days, tired just from getting out of bed!

One symptom I do HATE which I wish would go away though is my tremors. I get this weird feeling that's similar to the one you get when you need to stretch- that feeling of tension that's usually relieved by stretching so the stretch feels good- well I get that tension feeling but it's not relieved- it just kind of builds up in my chest into this feeling of 'too much energy, not enough air' in there- so I feel like I can't breathe enough oxygen. I guess it's the 'fight or flight' feeling, because it makes me feel like I need to move. I can't sit comfortably with it, it makes me want to keep moving to alleviate the feeling. I only ever get it when I'm still. A lot when trying to sleep (which disturbs me) and a lot when sitting. What's also horrible about it is if I try to just ignore it, my body gets these odd jerks/tremors. My leg will twitch/jump or my arms kind of go violently in and my shoulders shrug. I don't do this myself, it just happens to my body, and it's really annoying!

One of the downsides of florinef is I've noticed I am feeling this way more often. But I also noticed in little bits and bobs, my head is clearer and I'm not as tired/fuzzy, so I don't want to give up. Although these 'twitchy/wired up' feelings are actually my least favourite symptom, so if I can't find a way to soothe them and they continue to be this bad, I might have to see about a medication change. But I'm going to give it time and hope that maybe something else has caused the tremoryness to be worse, like the heat and a week of deprived sleep due to being too hot.

I am possibly going to have a very busy next week as well! I have the Summer Ball of the walking group this coming weekend, then next week my boyfriend is on about going to watch a practice golf championship in Scotland together, so that would be over 5 hours of travelling, staying in a B and B, walking around the golf course, watching the golf, another night at the B and B and 5+ hours home, I also made arrangements to see a friend (before I knew about this golf thing, otherwise I wouldn't have made those arrangements and would have just rested!) and, if possible, my bf might be moving house that Friday (a week on Friday) so I'd be helping with that. If he's NOT moving that Friday (it depends how fast solicitors can get the paperwork done) I am going to a POTS group meeting- yes, real life potsies meeting in my home city!

So that's a rather intimidatingly busy line up... hope I can gather the spoons for it!!! I am going on holiday soon after, so I know I can rest, rest, rest for two whole weeks, thankfully.