I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Monday, 26 April 2010

Out of the loop!

I haven't posted in a while, because I went away straight after having my tests, and with various things such as that 'cold' I felt like I was getting becoming a throat infection and irritating cough that caused me to lose my voice, along with getting 'trapped' abroad on holiday, I am way behind in 'the real world' and have a lot of catching up to do- with clients and college work. The weekend was spent with Lee having a lovely time seeing one another again after my delayed return and going out in the countryside- we found an absolutely WONDERFUL place to go out walking, and I have been thrilled so far with how much better I already feel since starting my meds.

I'm still determining to do what I can to help other people- my aim is to spread optimism, hope and positivity. I went through a very rough period of depression a number of years ago (it was caused by fear, not knowing what was wrong with me, why I was experiencing such terrifying feelings) but I have discovered that with the right attitude, the human spirit is strong and cannot be broken. So I'm still going to keep writing my blogs at DARE and I'm also writing for the dysautonomia connection blog. If stuff that I write reaches others and gives them some hope or inspiration then I am happy. I'm still 'meeting' wonderful people online too, who add to the inspiration and to my desire to keep doing what I can do to give people hope. One voice may only be very quiet, but together we can start to sing the song of hope and optimism- which is why I am so pleased that the dysautonomia community is coming on in leaps and bounds. I'm happy to have the DARE blog and to be a part of the dysautonomia connection one too, and am looking forward to getting to know more new people through the forums. It seems to be a good time for connecting with fellow dysautonomia sufferers, many of whom are inspiring each in their own unique ways. It makes me feel glad to be a part of such good spirit and positive energy.

So, once I am caught up with the things I am behind on, I will probably blog more again both here and at DARE.

Friday, 9 April 2010

I'm an official POTSY!

They were BRILLIANT. I didn't have to do the tilt test as I stood up for 2 minutes after laying for 20, my heart rate climbed to 142, they told me I could sit back down as I'd already "passed" the criteria for POTS and so there was no need to go on the table. I was diagnosed in an hour and a half. (I did other tests, standing and sitting with my arms folded 5 times, some cognitive tests joining numbers dot to dot, then numbers to letters, squeezing a device every 10 seconds as hard as I could and a valsalva- that got my heart racing and I could NOT get it up to 40 whatever on the machine, let alone keep it there! [I just about kept it at 20]).

Everyone was so nice and friendly- I bought some creme eggs (mini ones in a packet) from a vending machine after and they got stuck, a lovely young nurse came out and bought some herself, just to get mine to dislodge! I've never been to a city where people are so genuinely friendly and helpful- everyone we encountered was like it, from buying a dress (I must be the only POTSY who goes shopping post tests, but really it was only because it was so bright I NEEDED sunglasses, so we called in a shopping centre, and I passed this gorgeous dress in the window and thought it suitable for my cousins baby's christening hehe)and asking the shop assistant for directions to people I 'met' in the hospital when using my phone to text/get online (a woman in a wheelchair who was being friendly and making sure her hubs didn't wheel it over my toes lol).

We walked down to the quayside and had a lovely lunch, then we found a settee tucked away round a corner in the place and I had a little snooze as I felt so exhausted. Then we walked back to the train station, sitting on a bench by the river on the way to while away more time.

I'm so glad to finally be diagnosed! I've KNOWN since I was 19 that there was 'something wrong'. Finally, at 27, I've had it confirmed what it was. And it's all thanks to two people on the butyoudon'tlooksick facebook group, who told me about POTS when I posted a vent about being frustrated with my overactive bladder and constant thirst. Were it not for them, I'd have never even heard of POTS and I'd still be in the dark.

I even hugged the Dr and the nurse when I left. It was just so nice to be treated like a HUMAN BEING instead of a patient, and on top of that, to be BELIEVED and taken seriously!

I need to get myself into bed and to sleep now though before my eyes can't stay open a moment longer!!!

Thursday, 8 April 2010

Last one...

So if all goes as I hope tomorrow, this could be my last post as an undiagnosed Potsy. I'm as sure as I can ever be that I have POTS. All my self tests have shown a hr increase of 40-50 bpm in 3-5 minutes of standing. I just need to have it confirmed medically now!

I feel like I am coming down with a cold though. I'm hoping it's just spring allergies but can't be sure, as I have been SO busy and really pushed myself, and this is what tends to happen when I do that, I just get some kind of common ailment, like a cold or sore throat, grrr!

Today was a lovely day, warm and sunny, I went over to Lee's and we spent time sitting in the garden together relaxing, it was so nice. I'm going to miss him while I'm away, but I am ready for a holiday- the sun and relaxation does me good. I've been waiting so long for this appointment, but the worst part of it wasn't feeling so weak and so ill, it was the fear I had that it would come between me and Lee (since it was only early days when I started flaring up again) but he has been fantastic since I explained everything, really caring and supportive. So that has helped me get through these past few weeks of waiting for this appointment!

I just hope I get my diagnosis tomorrow. I will be happy to be told I have POTS because then, at least I have a reason for all my symptoms, at least I KNOW for sure and certain what I am dealing with. Then I can concentrate on spreading awareness and hope, because no matter what I am going to make something positive from this. I believe everything happens for a reason, and perhaps the reason dysautonomiacs are such good, strong, kind people is because we were brought to it to help spread a positive message of hope and reassurance to anyone suffering with it and other rare illnesses.

Even if I didn't get the POTS diagnosis though, I still think my IST is a form of dysautonomia, so I'd still make sure to be part of the dysautonomia community and help with spreading awareness and hope. But to be honest, I'd be SO surprised and shocked if I didn't get diagnosed with POTS. I mean, every time I checked out my own heart rate it did what it's gotta do to get the diagnosis, and that was without all the fancy stuff like beat to beat blood pressure monitering etc.

I just hope that I find out tomorrow, and soon tomorrow, so I don't have to be in the dark for too much longer.

I'll report back when I can!

Wednesday, 7 April 2010

Of brilliance and stress

I had a wonderful Easter with my boyfriend. I managed to do lots of things and haven't suffered too badly for it; I think now my hormones have settled down, I am getting stronger. I still get tachycardia and fatigue, but I'm not as shaky and weak, as I was when my hormones were playing up.

I worked out I did 16 miles of walking over the past few days! It's strange and somewhat paradoxical, but it seems the more exercise I can do, the better I feel apart from the fatigue. It's finding a balance, because if I get the balance right, I feel tired but not too tired to keep going, thus I feel better because I am being active and getting exercise, but if I do too much, I get shaky/weak and feel worse... I'm still figuring out what is 'too much' because I thought everything I did these past few days was going to end up being too much (but my philosophy was I am on holiday so I can rest afterwards and it'll be okay) and yet I'm still going... and feeling okay aside from being very tired!

Spending longer with my boyfriend than usual was fantastic and I've really missed being around him since I came home. Seeing him tomorrow once more before I go on holiday abroad. Also before I go for my tests on Friday... might finally get the tilt table test and potentially the correct diagnosis, that's assuming my IST diagnosis is wrong or at least not the full picture, but we shall see... I'm very scared, almost too scared to get my hopes up, but I AM hopeful that even if it's not POTS but IST that I have (and to be honest I'd be surprised if it was because every self poor mans tilt test I have done has indicated POTS as my heart changed by at least 30bpm, often more like 40 or 50), the person I am seeing Friday will be better equipped to treat me than the rubbish cardio I saw. Who incidentally has caused me to be taken off my overactive bladder medication that was helping me, just because it CAN increase tachycardia. But he said that was MY CHOICE based one which symptoms I felt were the worst. The increase in tachycardia isn't as bothersome to me as the bladder dysfunction and frequency and discomfort I get when not on that medication so I am really annoyed and have got to go to the Doctors tomorrow to see if my GP will go against his advice and let me back on the medication, but whether she will or not I don't know, so I'm really cross about it. I saw him back in JANUARY, so why they have taken me off the darn meds right now I don't know, it's ridiculous.


I just can't wait for tomorrow when I am seeing my boyfriend again so I can forget about all this med stuff and test stuff for at least a few hours. Irony is it would have been longer had I not had to come back for the bloody Doctors appointment to try and sort out this bloody debacle!!! GRRR.

Thursday, 1 April 2010

I sat funny and trapped some wind...

and it REALLY hurts and I am burping like a trooper!

I have finally decided what I am going to do.

I am going to finish my diploma. Work shadow my learning mentor friend for a few weeks one day a week to get some experience of the role.

Then I can draught up a CV detailing my qualifications and experience.

If no learning mentor jobs come up, I will look for (and eventually GET) a job as a TA to be doing in the meantime, so I can gain further 'on the job' experience of working with young children.

I will continue to do this until I find a post as a learning mentor.

I believe this will make me happier than being a teacher would, because I'd be focused more on helping the children who really need it. Those that are struggling, disadvantaged, etc. I think I'd find it really rewarding. And I don't think I'd be selling myself short doing it either, as there are opportunities within the role to progress, to work with others in the community providing for children as a team, and to even become the manager of a team of mentors if I wanted to. There's plenty of opportunity there, however I think the more 'simple' role of working with the children would make me happiest, but knowing that there's chance to progress further to a more managerial sort of role if ever I felt I needed a further challenge is good to know.


Finally I'm getting somewhere!

Why is making a decision SOOO HARD?!!!

Okay, so I decided I'd like to be a learning mentor.

There are some spanners in the works though...

I'm not sure if there's much availability of that job in primary schools...

So, second option is get a TA role, train as a higher level TA (better pay so I can afford to move in with my boyfriend) and then look out for a learning mentor job.

But I keep having this little nagging voice saying why not just do what you nearly did in 2008 and do a Post grad certificate in education, and be a teacher?

I'm just not sure if it's what I really want.

My problem is, I am very intelligent, so I could be a teacher if I wanted to be. However, after being ill, I've also lost confidence in my ability to handle stress. My Mum and Dad are both teachers, so's one of my best friends, and a lot of my Mum's friends through work are (where I help) and everyone seems so often very stressed!

So my dilemma is, do I use my brain to its full capacity and become a teacher which might mean signing myself up for a career of dealing with stress?

OR do I do what I originally planned to do and go for the easier, less stressful option, but one which I might end up stressed over for different reasons, like having to manage on a lower income, not having a good pension, worrying about whether I will accrue enough savings to live comfortably when retired etc.

I really just can't decide what to do for the best! I almost wish I hadn't let my Mum talk me out of doing the PGCE in 2008 and then I'd already be a qualified teacher now. But would I enjoy that, or would I be hating it if I was? That's the problem- I just don't know!

I suppose what I could do is get a TA job, get my HLTA status and see how I go with that. If I enjoy it, if I feel fulfilled, or if that nagging voice is still there teling me 'go further- go higher- you could do better'. IF it is still there, well I suppose it's never too late to learn. It'd only take me a year of hard work to become a teacher if I chose to. So if I work for a year or even a few years as a TA/HLTA and then decide I want to take it further, I can.

If not, if I really enjoy my role as a HLTA or find a job as a learning mentor in a primary school, then I won't have any regrets.

Yes, that sounds like the best plan. I suppose what's been nagging at me are worries that I could have done 'so much more' if I'd pushed myself higher, and that if I went for the less stressful option, I might just feel bored or like I'd let myself down, like I was underachieving.

But I feel equally uncomfortable about the idea of pushing myself into being a teacher only to discover I find it stressful and draining!

So really my best bet would be not to panic over my age as it's never too late, but get a TA role, get my HLTA status, get a FEEL for doing that work... and if I like it- great! If I don't, if I still get that feeling 'I could do more, I could do better than this' well THEN I will push myself that bit higher again, and do the PGCE. It doesn't matter if I'm in my mid or even late 30s! By then education might even have changed and be run much better without all these stupid tests and targets that are really what put me off getting into teaching in the first place.

I don't need to make rash decisions just because I'm 'getting on in life'. My boyfriend just got a degree at 38 and it took him 7 years because of how he did it part time whilst working full time! Plus he's not even 'academic'. So that's an inspiration. I was always academic and a high achiever, so if I choose to go beyond being a HLTA and decide yeah, I actually do wish I was a teacher, then I could do that.

Actually, even though it takes longer, it's probably better doing it this gradual way, rather than throwing myself in the deep end. That way I can test the waters of being HLTA or learning mentor if that comes up, and if I enjoy that I don't even have to swim to the deep end! But if I'm dissatisfied, I can always swim to the deep end and at least I'll have had the experience of being in the water for a few years! Because as of now, I've only been paddling. So I might as well get in nice and gently and learn to float and keep my head above water first, than dive right in the deep end when I'm not even sure it's what I want.

I suppose a decision doesn't have to be made all at once but can be made incrementally, with little bits of experience here and there. If I get used to working full time and end up liking it and wanting to push myself to learn and achieve more then I can. If I'm satisfied with where I am, I won't need to.

As long as I am working with children I think I will be happy. And if for whatever reason living with my boyfriend turns out to be living beyond my means, I can always move back in with my parents. It's not like I am going to end up on the streets with a begging bowl if I don't earn the salary of a teacher!

I need to decide based on what would make me feel happiest. I'm not sure on what that would be yet. I'm not sure whether my fears about being 'too stressed' if I were a teacher are based on all the negatives I hear from those around me and not on what I really want if I thought more positively. But I can find that out as I set foot into the world of working in a school.

The point is, if I want to go for it then I can, there's nothing to stop me. And if I choose not to, if I'm happy with a 'lesser' role as an assistant or mentor, there's no shame in that.