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

Wednesday, 31 March 2010

Update on my career investigations...

I defintely want to be a learning mentor. It sounds excellent!

I don't however want to do a 3 year degree. I already have a degree, even though it's in an irrelevant subject. But because I do have that, I can do a masters degree (1 year) in Learning and Teaching :-0 ! It won't cost as much money (or TIME! which is just as precious lol).

In order to do so, I'll need a job in a school. Unfortunately, the spanner in the works is that learning mentor jobs are hard to come by. My friend is one, and she was a TA first for a while- so here's my plan of action:

Complete my diploma in childcare and education. Set up a time when I can visit my friend in her school (maybe one day a week or something) where she works as a learning mentor, and work shadow her. That way, I can put down on my CV that I've had some experience as a learning mentor assistant.

Get a job as a TA. Going to ask the headteacher at the school where I've volunteered the past 5+ years if she would consider creating a vacancy for me. If not, I'll do everything I can to find one somewhere else.

Apply for the MA- I think it's a working practice based course so you need to have a job in a school first, so I might not be able to apply until I have a job, but fingers crossed if the head is willing to give me one, I might get one soon or if not this school year, I could at least say I WILL have one by September.

Keep my eyes open for a learning mentor position. If I'm doing an MA I will stand out above other candidates so give myself more chance of getting the role. Plus, the learning I will do whilst doing the MA will add to my skills and confidence.

I might be 27, it might have taken me a LONG time, it might have been a rocky road of fear, self doubt, sickness and indecision but finally, now AT LAST I know what I want to do. So now I can start making the steps to get there and DO IT!! :D

I can't believe I'm even contemplating this...

Okay so one of my biggest regrets in life is having been too ill back when I was 19 to get the sort of degree that would have led to a good job. Back then, I didn't even know what I wanted to do!

Recently I've been nurturing a desire to work with children, but I'd been considering a role such as TA. However, there isn't much chance for career progression with that, and being an optimistic person, I like to think that as I get a better handle on my health issues, I could progress up the career ladder. I don't want to be a teacher (though I could have been as I did get accepted a couple of years ago to do a PGCE- a years qualification for those who have a degree [mine is in rather a stupid, useless field]) but I would like to have some responsibilities and challenge. Maybe I am crazy, but I have let my health and my fears hold me back for so long... I'm starting to sense a rebellion coming- my inner spirit fighting back!

I saw on a job description of learning mentor a degree in learning, development and support that sounds interesting. I think being a learning mentor would be a great role for me. It's all about supporting children with learning needs OR about working with gifted and talented to push them... basically it's doing what I love, working with young children to help them. That's what attracted me to TA work but the problem with that, at least here in England, is they get a lot of menial tasks to do and if I got a mean teacher I could end up as the teachers dogsbody and not doing much of the stuff I love- the actual interacting, guiding and supporting the children.

Plus as a learning mentor you can progress with experience and even become a manager of other mentors. It just sounds exciting and as if it has more scope for opportunities. Okay so I may never want to be a manager but the fact that I could be if I wanted to be is enticing.

I wouldn't even need to do the degree to become a learning mentor, but the degree sounds attractive because it's one Saturday a month. 3 years (scary...) and done within work, so the tasks you get you are to do whilst you're working as a TA or LM already. So a big part of me right now- the ambitious, conscientious part that all but died when I was most ill, is crying out for the challenge.

And I might just heed its call.

Even though it's scary.
Even though it might take a chunk out of my savings.
Even though it will mean working hard for the next 3 years and pushing myself to the limit.

Because if I get that qualification, at least I am doing myself justice. I'm NOT too sick now to do it, I've just been too scared and too unsure of what I want. But now I'm having ideas again... this could well be the turning point.

I know it won't be easy. I'm not fully decided if I want to do it, I need to weigh things up carefully. But that part of me that regrets how much I wasted by not knowing what I wanted to do, by holding back because I was afraid... that part of me is wanting a challenge. It's just whether the rest of me is really up for it, or maybe it's just pie in the sky... I don't know.

I've emailed them anyway and asked if there's places available. I've talked it over with my Grandma, will do so also with my Mum.

I always felt like I hadn't done enough for myself academically, like I'd let myself down. Even though it's later on in my life, it's never 'too late'. My boyfriend has just gotten a degree at the age of 38! I'd be getting mine at 30 or 31 (depending if they have places available this year, or if I have to wait until next).

I feel like maybe I owe it to myself. I just hope if I do, I'm not taking on too much... BUT if it interests me and will help me in the career I've finally chosen... maybe I CAN rise to the challenge...

Tuesday, 30 March 2010

More thoughts.

I don't think I want to give up the hypnotherapy. I like helping people. So another possible option- if I had a full time job at a school- would be to take down my website and just distrubute business cards in the local area. That way, I wouldn't get so many enquiries and people to treat, but I'd still be doing it.

Trouble is, I love my website. It's so informative and I think it's that which helps people to decide to come see me.

Agh it's so hard to know what to do. I have to balance financial needs with personal desires and of course, my health. Tricky.

Maybe I'd be able to get by on part time hours- every afternoon or even every morning a week, with clients as an extra source of income and a source of enjoyment/pride in what I can do too. I enjoy making a difference to people who are suffering for whatever reason and I think I might feel sad if I could no longer do that...

I suppose all I can do is try it out and see what happens. There are other confusing factors to it, like when I move in with my boyfriend- where will I work from? And where will I advertise? So there's a lot of questions that are unanswered, and it is pretty scary, but I will just have to take it one step at a time. Find the job in a school first (the previous one I posted about was actually really low pay so wouldn't be worth the cost and energy in travelling) and then, depending on where it is and what the hours are, and where I'm living at the time, decide on what to do about the hypnosis.

Monday, 29 March 2010

Living life to the full

I think I'm coming to terms with being ill now. I have my IST diagnosis and I am almost certain I have POTS after self testing numerous times (because there's always a margin of doubt that makes me think- what if it's 'gone away' and I go to for my appointment with the specialist and look like a total fool- but that's more my ingrained fear of not being taken seriously after all these years of not being taken seriously because no one could pin down what was wrong!). Despite the fact I've always suspected I was ill, I still find myself feeling sad now that I know I am- but I think I am coming to terms with it more now. I am looking for the positives in it- something I always (thankfully) tend to do when faced with adversity. I am thankful for the new friends I have made and continue to make. I am thankful for the opportunity to use my hobby of writing and my determination to reach out to and inspire others.

I do 'normal' things (for instance, this weekend I went to a party, to my Grandma's for Sunday lunch, then drove to my boyfriends for the afternoon and tea with him, before driving home to bed) but never feel entirely 'normal' because I am always dealing with symptoms to some degree. But- that's okay. I won't let those symptoms rob me of my life. I'll keep living it, and be kind to myself/my body by resting and taking it easy as much as I can- but I'm not going to turn down invites to things. Even when they scare me just a bit because I don't know if I'll be 'well enough'. Even if afterwards I ache and feel exhausted. Because those are just symptoms- and at least I am living.

My boyfriend keeps asking me to go cycling with him, and the very idea of this terrifies me. TERRIFIES me! Because, the last time I did it, before I knew I had tachycardia, I found it soooo difficult. I was so slow that a child approximately 7 years old on a little bmx overtook me. Every muscle in my body ached and my heart was going crazy. But you know what? I cycled FOURTEEN MILES. Even though it hurt like hell and even though I was slow as a snail. The reason? I refused to admit defeat. I refused to give in, so I just pedalled- through the pain, through the tachycardia, through the rain and the cold and the frustration. I hated every minute, I felt like shit afterwards, but I still did it.

I don't really want to get back on a bike, because it was so unpleasant. But a stubborn, fighting part of me is saying- try it just once more. A shorter, easier ride (I didn't even mention how bumpy 7 miles of this ride was!!) on a nice day in warm sunshine- you might just surprise yourself.

So, maybe I will. If I hate even that, maybe then I'll sell my bike. But if I can cycle 14 miles in the rain on stony hard ground and still come out the other end okay, then I can go on a short bike ride on a nice day and see if it isn't nicer. At least I'll be strengthening my calf muscles!

So, I guess what I am saying is yes, I may be ill but I have an attitude. Being ill may slow me down, but it won't stop me. I'll be like the snail, slow, lugging around my 'shell' (whatever symptoms I may be dealing with at the time) but still living my life- and in the meantime, perhaps I'll leave a pretty silver trail in my wake. I might not be able to 'blaze a trail' but I'm content to just live my life at the pace that feels right for me, and those that take the time to really notice will see my little silvery trail and smile.

Every little thing makes a difference. You might not feel like it does or think that it does, but it does.

So yes, I've come to terms with being ill because I've made my decision. An illness I may have, but I also have a LIFE and a determined, fun free spirit. So no matter what, I am living my life to the full.

Even if it does mean getting on a bike again one day... :/

Saturday, 27 March 2010

Am excited!

So I looked on the city council website just to see what kind of jobs were available and the only TA job was part time, 2-3 days a week! haha! So my Mum was wrong. Okay so these sorts of jobs might be rare but it just shows, there is a chance!

I considered applying for it, but it's temporary (June until March) and as I'm going to Peru for 3 weeks in November, I thought it'd be highly unlikely they'd consider me. Plus I did want to take this Summer OFF because I've been studying non stop since school. I bookmarked it anyway, as something to think about. It's just given me hope that I might just be able to get the kind of job I want (part time)!

Decisions, decisions

I have a lot to think about these next few months. It's an exciting time, the decisions won't be easy to make, but I don't feel stressed or afraid about them... which is a really good thing! Ordinarily I hate change and get very freaked out/anxious. Not this time- least not yet anyway!

For the past 5 years I've worked as a hypnotherapist. It's only ever been part time, because I never generated enough clients to do it full time hours. But, part time is what I've been able to manage. I've enjoyed it immensly. I've helped people and I've managed to earn money, though not enough to move out of my parents and be independent.

My boyfriend would like me to move in with him one day- it's not something that's imminent because we're both being slow and steady about it, which is good (any faster and the change would seem overwhelming and I'd freak out!) but it means I'll have to make a lot of changes. I won't be able to just be a hypnotherapist then- I'll need to earn more money.

Luckily, one of my passions is also working with children and I'm nearing completion of a childcare diploma that would allow me to do that. So one of my ideas was working 3 days a week with children and 2 days as a hypnotherapist. That'd be ideal... but- my Mum, who has worked in education the past 22+ years, pointed out that there's really no jobs for teaching assistants (what I'd like to be) that are just for 3 days. It's either full time, every morning, or every afternoon.

If I was working every afternoon, I could see one client per morning, so that's an option.

However, another thing crossing my mind is for me to stop being a hypnotherapist and focus on full time work. I've never done it; I'd like to try. Full time school hours as a TA I think I could manage, so long as I could go home and rest afterwards (my original plan was full time TA, see clients in the evening and holidays, but since finding out I really DO have a chronic illness and am NOT just 'unfit' or 'tired' I have realised this would be too much for me).

I'd really like to work in a school, I just don't know what my best option would be... whether to go for it full time and give up the hypnotherapy... or whether to try and do both somehow. It's not an easy decision.

I feel almost like if I tried to do both, I might end up doing neither one as well as I could if I was just doing one. However, just doing hypnotherapy is not a viable financial option. So that leaves just doing the TA work. If I did that, I wouldn't have any 'cases' to worry about (there are times when helping other people with their problems can be stressful and that's when I'm JUST doing that, nothing else!), all my free time would be mine to spend however I choose.

It seems like an attractive option... but then I think I might miss the hypnotherapy. But I'm not sure. I've loved doing it these past 5 years and it's built my confidence because I've been able to do something during the time I wasn't well enough to go out and get a 'proper' job. But it can be draining. I don't know if, realistically, I want to do both when it might be detrimental to ME. I want to look after myself. Live my life to the full, but that means allowing time to relax and have fun too. If I try and do everything, I won't have time or energy left for MYSELF and the things I want to do.

So I'm actually considering giving up the hypnotherapy in the future. Even if I'd miss aspects of it. Because sometimes, to gain something, you have to give up something else.

Another thing I'd really like to do is write again. Properly, not just a bit of blogging here and there- but a book. If I worked as a TA to bring in the necessary income towards bills, holidays and fun, I could write in the evenings and/or at weekends and during the holidays. It might never come to anything, but at least then I've tried.

I just don't know if I'm ready to give up something I've enjoyed doing for 5 years, something that's so worthwhile because it helps others and makes me feel good because I've done so.

But if I want to have a balanced life in which I have time for me, to do the things I enjoy doing- like socialising, dancing and holidays, then I might have to.

I don't need to decide yet anyway. It will also depend on what jobs are available. If there's a perfect little part time TA job I could take that and have a go at doing both that and hypnotherapy, see how it goes.* But then equally, if there's a perfect full time job at a good school or nursery, I wouldn't want to miss out on that just for the sake of hanging on to something that it might well be time to let go of...

*The trouble is, when I imagine doing both... I get the feeling that the hypnotherapy would be a hindrance to my spare time that I'd like to have to relax, meditate, and take care of myself by doing things that make me feel good!

For some reason, since the idea occurred to me, I'm leaning more towards letting it go... perhaps I sense that it's time to start focusing on looking after ME instead of looking after others...

I'll just have to put my trust in the universe to guide me the right way. I'll know what to do when the time comes. I trust that, and even though it might not be easy, I trust it'll work out for the best.

Thursday, 25 March 2010

Amusing brain foggy moments...

Because you gotta laugh!

Um... would you be amused if I told you that I had two amusing brain foggy moments to write about but a split second after deciding to do this, one of them went completely out of my mind?? :/

Okay so the first was at school whilst helping during a guided reading task, we got to a page where there was a graph of children's favourite ice creams. I was asking the children with me doing the task what their favourite flavours were, and adding the votes on to the total. In so doing, I somehow managed to add 2 to 7 and come up with 8. When a child questioned me I still thought my calculation correct and, thinking she had misunderstood the graph as she is a bright child, I pointed to the graph and said 'Look it goes 7 at this point, so then add 1 vote for James and then it goes to 8, then add 1 vote for me..." as I realise this does not work out to 8 at all, she says "Yes that's what I mean, 7 + 2 makes 9!" At which point I didn't really know what to say so I just gave her a sideways hug and said "Yes you're right, I obviously can't add up anymore, hahaha!"

Oh, and the second one has come back to me tonight. I was at college last night (oh my goodness NO I meant to say 'the second one has come back to me NOW lol!!!)- anyways. The tutor was asking us what help would be available for mums who've just had their babies. There were only two of us who'd turned up to class and my class-mate was being VERY quiet despite the fact she's had children so knew these answers! So I was having to provide them all and I was doing well but running out of ideas. You know when you're racking your brains thinking and then suddenly it's like a light bulb goes on and you think YES! I got it! ?
Well, that happened to me- so I confidently blurted out "ANTE NATAL!" thinking now why didn't I think of THAT one sooner eh? Go me, I'm really on the ball tonight!

Leaving my tutor to point out that this really would not be much use to someone who's already given birth to their baby.

Oh dear.

In my defence, I had just been to the toilet, so I'll blame the standing up and the peeing for bringing on that. Incidentally, what a good job I'm not a male with POTS because I recently discovered that emptying your bladder makes your blood pressure temporarily lower (oh that's jolly good, mine must be going lower many many times a day then!). At least we ladies are sitting down for that eh!

Brain fog can be amusing at times, but I don't half feel dippy thanks to it! Remember Jade Goody's Big Brother 'Jadeisms'? It's like such things are beginning to take over my life!

I wish I could find that philosophy essay I scored near top marks on about solipsism. I wouldn't be able to understand it now, (I can't even really remember what solipsism IS!) but at least I could read it and think- wow. Once I was very, very clever!

So sleepy

I had what felt like a manic couple of days at the beginning of the week, with lots of thoughts whirling through my mind and lots of excitement and enthusiasm about DARE. I've mellowed since, due to the fatigue overtaking me- but that's the beauty of a group blog- it doesn't 'die' just because I'm too tired or brain foggy to update things. I hope for it to be a very much alive thing, even when the team aren't blogging. I'm hoping for input from others as much as possible too, whether it's submission of personal stories for the PANS page, or whether its ideas/pictures/articles to be included within the blog (personal credit will be given).

This week, fatigue wise, hasn't been the best but I've managed to push through it. I go in and help my Mum who is a teacher and I find that being with the children boosts me a little bit temporarily, because I forget my pain and I don't feel as tired. I'm more tired afterwards, but it's worth it.

I've noticed myself having a lot of aching and cracking in my joints this week which is giving me a general feeling of malaise. Emotionally, I find myself veering from positivity and determination to feeling pretty darn fed up and wishing I wasn't so damn tired all the time!

Waiting for April 9th also feels like an age... even though it's gotten closer, it's like the closer it is, the longer the wait seems.

Monday, 22 March 2010

Been busy over at DARE

Hi fellow bloggers and followers.

I've been putting all my time and energy into the group blog project that is DARE. Whilst I will still continue updating here when I can on things of a more personal nature, I might be a little more sporadic here.

In the meantime check out DARE- I'm sooo proud of it and excited about it and so thrilled with the team- I could not be doing it without them, believe me.

Check it out!

Saturday, 20 March 2010

Friday, 19 March 2010

Thinking and blogging.

I've been thinking a lot today, which spurred some very lengthy blogs over at my new group blog DARE

See, at the moment I'm doing what I can to raise dysautonomia awareness BUT I also have a separate facebook account which I use to talk about that stuff. Some might judge that as hypocritical, but I do have my reasons.

The main reason I chose to have a separate account is so that I can talk in depth about dysautonomia issues and share things with people on that account that I would not want to share with the 200+ people on my main account.

I know and understand my own reasons and stand by them, but I also have a questioning and inquiring mind (when it works right) and I did wonder to myself, isn't that slightly hypocritical- making a blog called DARE with the slogan "Daring to Raise Awareness", when I'm being quiet about dysautonomia amongst those 200 odd passing acquaintances from my school days?

Maybe it is, but it's my choice and I stick by it. The fact is, I just don't believe many people on that account would give a stuff and so I'd be wasting my time letting them see my writings about dysautonomia.

I'm not hiding the fact I have a health condition, it's not a secret, I'm just choosing not to talk about it in a certain arena. Much the same way that someone can be gay but choose not to go to parades and flaunt gay rights.

Another reason for my choice was the fact I'm not officially diagnosed yet. I have all the criteria for POTS including a heart rate increase of usually over 50bpm. But as it's not official, I can't yet say 'I have dysautonomia'. Even though I truly and deeply believe I do. People who HAVE dysautonomia already know how hard it is getting diagnosed so they will understand me and my struggle. Healthy people have looked at me with scorn for believing I have something that's not yet proven, and treated me as if I was crazy and delusional. So again, I choose not to talk about it. I can't MAKE them understand and it wastes my valuable energy trying to.

So, I chose to have another account on facebook where I could join groups and post my blogs about dysautonomia, sharing them amongst people who understand. Because that's what I want at this stage of my journey. To be understood. To be amongst those who understand, to help and support one another. And whether it makes me a hypocrite or not, the only people who truly do understand are the people who have dysautonomia or other chronic illness, and so those are the people who I share these things with.

As for the DARE blog- well, I am hoping that eventually people who don't have dysautonomia might take a look at it and might even enjoy following it. But to be honest, I don't hold much hope of that. Why? I'm not a pessimist- I just believe that people respond to what they can relate to. So, DARE might become popular amongst the dysautonomia community, but I can't really see 'healthy people' following it because I doubt they could relate. But the way I see it is, at least it gives us a voice, a presence. It shows that we are NOT taking this disease lying down. It shows that we are determined and that we will fight.

Tuesday, 16 March 2010

Biggest Fear...

This might sound crazy, to some, but my biggest fear at the moment is of going to the tests on 9th April and the specialist telling me that I don't have POTS...

Don't get me wrong. It's not that I WANT a chronic illness. It's just that, as far as how I feel is concerned, I've been living with one for 9 years this Winter and every time I've had tests or tried to get the doctors to believe me that something is wrong, I've been asked if I'm stressed, told that I'm healthy, and made to feel like I've just wasted their time being neurotic.

The cardiologist who diagnosed me with IST told me to try coming off my overactive bladder meds as they can worsen tachycardia. He said they wouldn't be CAUSING it but could be exacerbating it. So then, that made me worry- what if it's the meds causing the +30bpm increase and I don't actually have POTS at all and then there's (once again) NOTHING to explain why I feel the way I do.

Plus the fact that I can still do a majority of things that involve standing up and walking around and even dancing, and I started wondering if I wasn't just being delusional, or overly hopeful that I'd finally found THE ANSWER when really it was just another one of those wrong damn trees I'd gotten a hoarse voice from barking up.

I emailed my new consultant who has diagnosed and treated many POTSies and asked her how long she would recommend I come off the tablets for prior to my test in order for it to be accurate and a true reflection of what my heart rate naturally does. She said two days.

So, today it's two days since I last took a tablet, so I could test myself and make sure I'm not going to be travelling to Newcastle, getting my hopes up that I'm finally going to get a diagnosis, and wasting everyone's time.

I still got POTSy results. So I'm not delusional or barking up any wrong trees. All the tablets seem to do is add to my tachycardia somewhat, so that instead of being 56-64, my resting heart rate is 65-74. Even without the tablets, I am still getting increases above 50+ beats per minute at times.

I'm overanalysing things and charting and tracking them because I feel like I've got to PROVE that I'm not well. But really, my heart rate is speaking for itself along with all my funky symptoms. I might be one of the very lucky ones (and I am counting myself lucky after realising how damned debilitating dysautonomia can be for many) who can still walk around and function generally well, but I still HAVE this and it has still changed my life in a number of detrimental ways. After all, 'normal' people don't suffer with chronic fatigue, headaches and body pain just from being upright!

All I need now is to have it confirmed (oh, the peace of mind I will have then, to finally after 9 years have a diagnosis!) and then I can start the journey of learning to live my life well in spite of it.

April 9th can't come soon enough!

Monday, 15 March 2010

Mother's Day

I had a lovely Mother's day. I stayed home Saturday night (ordinarily I'd go to my boyfriend's) and though that was very strange and I missed him, it was good to get a good night's sleep. I stayed home for a nice roast dinner with my Mum, then went to see him afterwards. We had a lovely relaxing afternoon lounging around in the sun shining through the window- it was blissful! We listened to music and chatted and talked about plans for future holidays. I came home quite late (for me!) at 10pm, got straight into bed and slept great.

I'm tired and achy and keep getting absolutely AWFUL neck pains, headache and nausea. Other than that, I am doing okay!

Friday, 12 March 2010

I'm doing good!

I discovered that resting actually makes me feel WORSE. But being too active makes me tired and run down and susceptible to illnesses like colds/sore throats. So I have to find the balance between cycles of activity and cycles of rest.

The past couple of weeks have been a cycle of activity. The previous 2 were a cycle of too much rest- the resting made my BP low and I felt worse.

So, whilst I have been busy, I have: been out two Friday nights in a row. Been to my boyfriend's the Saturday evening after each of these nights, and been a walk each Sunday with him. This past week, Monday I went on a school trip to a castle, which involved climbing up the keep. I managed this fine because at each level, the guide was telling the children things so I could sit and rest. Tuesday I went a short local walk with the school children learning about the old houses in the village. That was less fun because it involved a lot of standing around in the cold while the teacher spoke about the old buildings. I went home to bed afterwards and have been taking it fairly easy since, but I managed to go into college last night and hand in my latest work. I left early but the fact I felt okay to go was a difference in how I'd been feeling the previous few months.

Generally, I'm tired and achy and keep getting bad headaches now- which is a sign I need to recuperate. I'm really glad though that I have got some strength back and am able to be more active.

Having a take it easy weekend this weekend, spending it with my Mum and Grandma instead of my boyfriend due to it being Mother's day. I will miss him BUT I need the rest. I will sleep better at home.

Wednesday, 10 March 2010


I've been too busy (and thus too TIRED!) to update this blog lately, but I will get around to it. I'm taking a weekend off visiting my boyfriend this weekend due to it being Mother's Day. I love spending time with him but I'm relieved because I get better rest at home and I NEED THE REST!!

Today I wasn't having the best day physical symptoms wise (had a sleepless night with the feeling deprived of oxygen and getting body shakes/twitches weirdness)but I felt inspired to make a website explaining dysautonomia, as I saw some friends last night I hadn't seen in a while and they were asking me how I was doing, and I'm finding myself getting weary of explaining this thing that is so darn hard to explain! So I figured, those true friends that care and want to know, can be directed here:


One little thing I will say is my boyfriend was lovely at the weekend. He mentioned the email and how part of it said I need to know that he still cares about me despite all this, and he told me "I do care about you, of course I do"

I managed to be very honest back and said I felt guilty that I'd only found out I have an incurable health condition recently, because it made me feel like I'd made him fall for me when I was going through a healthy phase and now I'm not he has to put up with stuff he could never have known he was getting himself in for, and I worried it would put him off and make him change his mind about me. He said if it was anyone else, maybe it would put him off, but it doesn't make him change his mind about me, which I thought was really rather a special thing to say. It made me feel like he was saying he can see beyond my illness to ME. And that he won't let the illness get in the way of him caring about ME. He then went on to say the shorter length walks are fine and that he just wants to spend lots of time with me, which he said is a big compliment coz in the past he's grown tired of a woman's company and wanted her to leave him be, but with me, he wants to see me MORE.

Then on the actual walk, he made sure I was feeling okay, and when we had to walk up hills, he was patient and understanding when I needed to stop and rest, and told me that at the top of the steepest hill was a bench. :-) After the walk, he told me I'd done well and he was pleased I enjoyed it.

He's not perfect mind you, he wanted me to go to the bar and order food at the pub we visited after the walk, and he rolled his eyes at me when I said no, I want YOU to go because I'm really tired now! (We were sitting down at the time). But hey, I never expected perfection- I'm not perfect either and he accepts my funny moods and my snappy-ness when I'm tired. And how I can be stubborn and sometimes don't say things in the nicest of ways when a raw nerve is touched. So, I feel much better now I've been honest and open. I need to remember that it's hard for others to understand, and that keeping it all bottled up doesn't really do me any favours.

Friday, 5 March 2010

The emotional strain... Follow up

Thanks Michelle and Em for your support and advice in my last post.

Because I don't see my boyfriend in the week, and because I am bad at explaining things (get emotionaland brain foggy!) I sent him an email- oh yes, I did mention that in the previous post (what was I saying about brain fog? lol).

He replied to it saying he will be more patient with me and is happy with the shorter walks I can manage, as long as we are spending quality time together.

Hopefully from now on he'll understand better now I've explained it all. It was really dumb of me to pretend like I was super-woman and not admit how bad I feel. I have more issues than just POTS- I was afraid he just wouldn't wanna be with a 'sick girl'. But I guess if it turns out he doesn't then it's better I know, and it's better I give him the benefit of the doubt and let him decide with the full facts at his disposal!

For some reason though I feel very drained and sad. Maybe just because it took a lot out of me, daring to finally open up. Added to the fact I am still coming to terms with finding out something HAS been wrong with me these past 8 years (no one believed it) I think in some ways I still have some fear that because I don't LOOK sick or even SEEM it at times, people won't believe me.

I'm counting down to April 9th still- when I'm hoping to find out whether it's POTS or IST or maybe both that's affecting me.

It's been good mostly to get things out in the open- the way my bf would say things like "I hope you get fixed" made me afraid to tell him how bad I felt and admit to my fears that it might NOT get 'fixed' so easily as just seeing a Dr and popping a pill and being better just like that. He said if it doesn't then he'd be disappointed about me not being able to do certain things like longer walks, but "that's life." He assured me he wouldn't leave me and that the only reason he's been 'nagging' me about these walks is because he wants to spend lots of time with me. I guess he couldn't understand why I was able to do them in the summer, and now can't, when I still look and seem (at least at the weekend when I see him and have rested lots in the week in order to have the energy!) as healthy as I did then.

I know someone can't promise you they'll never leave you, and I won't hold him to that, I just wanted to know that he has good intentions- that he intends to stick with me, that he wants to stick with me. I was afraid that if he knew I might not improve, he'd not intend to stick with me at all. But he seems to want to at least for now, so from now on I can be more honest and upfront about it all. If things change then they change, but you never know, now I've been honest and 'let him in' they might just change for the better. Fingers crossed.

Thursday, 4 March 2010

The emotional strain...

It's like everything has blown up suddenly. Perhaps it's my fault for trying to 'be a trooper' and hiding how bad I really feel, but now it's all come to a head. I can't take it anymore. What am I talking about? How my boyfriend just doesn't seem to understand.

He keeps going on about wanting us to do longer walks together. When here I am, pushing myself through 5 miles walks, feeling thankful that I can walk at all, and feeling like death warmed up half the time. (But- pushing myself to an extent does help or I wouldn't do it- I do it for me, not anyone else).

I actually got upset and had a mini emotional breakdown on the last walk we did, because he was going on and on about how he hoped I'd 'get it fixed' and it just sounded like he wouldn't want me around if it turned out that it couldn't be 'fixed'. He was really sorry then and when I admitted to carrying this fear around he assured me he would still want me and he sounded 100% sincere. He then went on to explain that the reason he keeps going on about these walks and things is because he wants to spend his time with me because I'm 'different than the others' and special to him.

Well, that's all very well but I wish he could understand more how it makes me feel- I feel like I'm being a disappointment to him because I can't do those things HE wants. And what about what *I* want?

First I was upset, then I was okay and thought things might improve after I opened up a bit more- but then on the phone last night he brought it up AGAIN- the desire to do longer walks.

I don't think he realises how debilitating this can be. I'm so frustrated that I can't seem to get it through to him, although admittedly I've not entirely tried. So there comes the email.

I sent him a long, detailed email with all my feelings, fears, hopes and details of how this condition makes me feel physically and emotionally.

If he still keeps nagging me after that, I'm going to get very cranky with him. And that's just one more negative feeling that I DON'T need right now.

NB/ when we met, I didn't know I had tachycardia and I pushed myself through an 11 mile walk, and I believe it's that, among other things like social events I pushed myself through, that made me have such a crash in November/December (that I am still not fully recovered from). But because I was fitter when we met, he can't understand now why I am saying no, I can't do that. (because I did it before).

I guess I just need to give him time to understand it and I can't expect him to grasp it right away, especially not when I've been mostly hiding how weak and tired it makes me feel.

Perhaps brutal honesty IS the way forward...