I've been 'too chicken' to do this for years (well, actually it's because my local hospital is horrible and I've had one too many bad experiences there, first hand as well as when my Grandad was there dying and how awfully he was treated). But now patients are allowed to CHOOSE their own hospital, I am going to do it if I have do.
Do what?
Go back to see a urologist.
You see, they wanted to do urodynamics tests on me and my cystoscopy was so awful (done by an intern, and not very well I might add!) that it put me off having any further investigations at that hospital and I discharged myself.
But now what I figure is this- if I can't take desmopressin OR if it doesn't help, I need to try and find something that does/will. I heard a while back about interstim therapy, a sacral nerve stimulator that can help bladder conditions, but I thought you had to have interstitial cystitis to have one. You don't.
Now that I am diagnosed with a neurological condition, I feel I'd be more able to push to have one if other therapies don't work. The oral medication I am on now DOES make a difference, but it's not enough. If I leave the house, I still get ultra potsy because I can't keep my fluids up as much as I would were I near a bathroom- because my bladder capacity is so reduced due to my nerves not working right. If this sacral nerve stimulator could help to increase my bladder capacity, then I'd be able to drink more and would thus be less potsy. That way, I might actually be able to live a more 'normal' life.
So, depending on the outcome with desmopressin, I'm going to see a urologist AT A DIFFERENT HOSPITAL about it. At this point, ANYTHING that could help me with my bladder symptoms I would be willing to try, because they make dealing with pots so impossible, plus as much as I do drink I think I pee it right back out anyway!!
So, just waiting to see what my specialist says about desmopressin... if I can try it and it works, great. If not, urology here I come...
Friday 28 May 2010
Woke up all assertive.
So, yesterday, my ultra potsy day.
I think that the problem was hydration. When I got home from the trip out with my Mum, I felt EXACTLY as I do when I've been travelling by aeroplane. The only reason I can think for feeling that way is dehydration.
Because I have an 'overactive bladder', when I go out anywhere I am reluctant to drink very much water, which as we potsies know, is not good for pots!!
The way I have managed this is by going places in the afternoon and drinking around 3 litres before leaving the house. Then slowing down my intake about an hour or so before leaving the house, so I can be sure that my bladder is empty when I leave and thus won't be pestering me to go to the toilet too soon.
However, life can't always begin in the afternoon! There are things I want to be able to do that will involve leaving the house in the morning and even things that would involve being out all day. Things that right now I feel I couldn't do whilst keeping up my fluids because I'd need the toilet and not be able to go. :/
If there is any chance or any way something can help with my symptoms of peeing out every 250-300ml then I want to take that chance. I have read about some potsies taking desmopressin to help them retain fluids and I had asked about it at my diagnosis appointment and been told it was a possibility. Now, I don't know whether something has been lost in the communication between my Drs and my specialist but so far nothing has happened about that beyond me getting some tests for diabetes insipidus. But I know of people taking it IN THE UK who don't have that so I know it CAN be done. So, I have once again taken matters into my own hands and emailed my specialist asking if there's any chance I could at least try it, in case it does help me retain fluid.
All she can do is say no, but if I don't ask then I won't know!
I think that the problem was hydration. When I got home from the trip out with my Mum, I felt EXACTLY as I do when I've been travelling by aeroplane. The only reason I can think for feeling that way is dehydration.
Because I have an 'overactive bladder', when I go out anywhere I am reluctant to drink very much water, which as we potsies know, is not good for pots!!
The way I have managed this is by going places in the afternoon and drinking around 3 litres before leaving the house. Then slowing down my intake about an hour or so before leaving the house, so I can be sure that my bladder is empty when I leave and thus won't be pestering me to go to the toilet too soon.
However, life can't always begin in the afternoon! There are things I want to be able to do that will involve leaving the house in the morning and even things that would involve being out all day. Things that right now I feel I couldn't do whilst keeping up my fluids because I'd need the toilet and not be able to go. :/
If there is any chance or any way something can help with my symptoms of peeing out every 250-300ml then I want to take that chance. I have read about some potsies taking desmopressin to help them retain fluids and I had asked about it at my diagnosis appointment and been told it was a possibility. Now, I don't know whether something has been lost in the communication between my Drs and my specialist but so far nothing has happened about that beyond me getting some tests for diabetes insipidus. But I know of people taking it IN THE UK who don't have that so I know it CAN be done. So, I have once again taken matters into my own hands and emailed my specialist asking if there's any chance I could at least try it, in case it does help me retain fluid.
All she can do is say no, but if I don't ask then I won't know!
Thursday 27 May 2010
The email
The one I mentioned in my previous post had this to say:
Q: I get so tired at times of the uncertainty of life, the unlimited aspects of life that are revealed in a moment, and then as soon as we think we know what it is, it becomes something else to navigate. How does one ever come to terms with this?
A: Our experience of life is determined entirely by our point of view. Life is simply an endless flow that we see through the glass of our sense of self. The color of the flow is the color of our glass. What is that flow? Never-ending movement. Is it uncertain, or is it simply a flow, like water running down the side of a mountain, or the sea endlessly kissing the shore?
"Uncertainty" is an interpretation of the flow of life, isn't it? A story.
This raises a question: Are we navigating a sea of uncertainty, a sea of opportunity, or a sea of ecstatic bliss? It all depends on our point of view, and that depends on our relationship in stillness with the flow of life. Uncertainty is actually quite certain, isn't it? Why should we argue with it? Arguing with it, expecting it to stay put according to our expectations, can be very tiring. Much easier to go with it, rooted in stillness rather than the constant change. An interesting thing happens when we let go of expectations in stillness. We find we have many more choices as we move through – unlimited possibilities for uplifting the flow of life. And there is joy in this.
The question of uncertainty gradually becomes a non-question as we engage in spiritual practices. The question melts into what is, as we become that which we were questioning. We find we are not required to take sides (no sides to be taken), or have a fixed point of view, and that doing so only harms us and others. This awareness becomes acute, and we learn from our own experience.
As we cultivate abiding inner silence, and see it (our silent Self) moving increasingly in resonance with the flow of life, then life is seen through a clear glass. It is seen as an endless flow of radiant divine love, beautifully adorned with all of its warts and blemishes, permeated with pure bliss consciousness all the while. We are That, and we find ourselves acting accordingly in the world.
We come to terms with the flow of life by awakening in the realization that we are life itself.
The guru is in you.
Q: I get so tired at times of the uncertainty of life, the unlimited aspects of life that are revealed in a moment, and then as soon as we think we know what it is, it becomes something else to navigate. How does one ever come to terms with this?
A: Our experience of life is determined entirely by our point of view. Life is simply an endless flow that we see through the glass of our sense of self. The color of the flow is the color of our glass. What is that flow? Never-ending movement. Is it uncertain, or is it simply a flow, like water running down the side of a mountain, or the sea endlessly kissing the shore?
"Uncertainty" is an interpretation of the flow of life, isn't it? A story.
This raises a question: Are we navigating a sea of uncertainty, a sea of opportunity, or a sea of ecstatic bliss? It all depends on our point of view, and that depends on our relationship in stillness with the flow of life. Uncertainty is actually quite certain, isn't it? Why should we argue with it? Arguing with it, expecting it to stay put according to our expectations, can be very tiring. Much easier to go with it, rooted in stillness rather than the constant change. An interesting thing happens when we let go of expectations in stillness. We find we have many more choices as we move through – unlimited possibilities for uplifting the flow of life. And there is joy in this.
The question of uncertainty gradually becomes a non-question as we engage in spiritual practices. The question melts into what is, as we become that which we were questioning. We find we are not required to take sides (no sides to be taken), or have a fixed point of view, and that doing so only harms us and others. This awareness becomes acute, and we learn from our own experience.
As we cultivate abiding inner silence, and see it (our silent Self) moving increasingly in resonance with the flow of life, then life is seen through a clear glass. It is seen as an endless flow of radiant divine love, beautifully adorned with all of its warts and blemishes, permeated with pure bliss consciousness all the while. We are That, and we find ourselves acting accordingly in the world.
We come to terms with the flow of life by awakening in the realization that we are life itself.
The guru is in you.
*sigh*
Feeling a little glum lately, ironic that had to happen after I said I wanted to write more about the positive. So I figured what I'd do, so as not to deny my negative emotions, is get them out first and THEN put in my 'despite dysautonomia' things at the end, to end on a positive note, to show others and remind myself that even though it can be hard to live with, life can be lived in happy ways despite dysautonomia!
So, feeling glum. Well, I guess it's mostly because I feel FRUSTRATED. I feel like my life is on hold. Because of pots I haven't truly worked (I don't consider my own business with very part time hours really working) and now I've made my mind up what I'd like to do, it's too late to apply for this year, so I have to wait until NEXT year. Next AUTUMN! And to top that off, it's not even guaranteed I'd get a place, so if I don't, I'd have to apply again in 12 to start in 13, or apply to do a different route into teaching, but again it would be starting in 2013! Because by the time the application process is over, I'll have missed the deadline for anything starting in 2012. So I basically get one chance only, if I don't accepted this year for NEXT, I'm waiting until 20-freakin-13!!!!
It makes me feel afraid and I don't like to feel afraid. It's daunting enough having pots in your life without other things having to be so hard on top of that!
I am trying to be optimistic though and tell myself I'll find a way to work with kids no matter what. If I don't get accepted for the Graduate Teacher Program, I'll find out by next Summer. So then I could get a job either as a teaching assistant or even a job in a pre-school or nursery. Although as I would prefer to be a teacher, I'd probably be best getting a TA job and working up to HLTA (top level) and then if I chose to reapply for GTP I'd have more experience.
I suppose I am feeling bad though because I'm assuming I won't get in- because I am thinking about this on a very bad potsy day and that always makes me afraid and think the worst.
So, what I will have to do is just do everything in my power to make sure I get accepted, so I can begin training in September 2011! And IF I don't, instead of feeling glum and panicky about it now, I will cross that bridge when I come to it! I am after all a big believer in the universe supporting and guiding me...
oh. my. god!
I can't believe how IRONIC this is what just happened!
As I was writing that sentence, an email popped up- just for long enough for me to see the title: THE UNCERTAINTY OF LIFE.
I believe in signs like that. So I will read it when I finish this blog, and I'm sure it will probably be telling me to embrace the uncertainty and not to worry because no one can know what their future holds so there's no point worrying about it!
So, I will just apply for the GTP with the best glowing references and glowing self report I can muster, and then pray and hope and ask my angels to pull out all the stops (I believe in angels and regularly ask them for help and they always do help- my driving test story is a class example of that!).
Then IF I don't get a place, well I will accept that 'it wasn't meant to be' and accept that the universe is steering me in a different direction, and that even though it wasn't in my plan to go that way, everything will turn out all right if I just have faith and trust!
Wow, I feel much, MUCH better now! hehe. Blogging is always so cathartic for me!
So, despite dysautonomia, I went out walking at the weekend in very hot weather and enjoyed most of it! Didn't walk as far due to the heat, but saw some very pretty countryside and took pretty pictures. Passed a trout fishery where they sell fresh trout, which we are going to buy one day for our tea! Yum yum!
Also, last week I went out with friends to a restaurant and had a lovely time chatting and catching up, and tomorrow I am going out for a friends birthday- and will no doubt end up dancing. Even though I have felt uber crappy today, I am determined to go as I've been looking forward to this night for months!
Oh, and today me and my Mum found a gorgeous lounge bar/restaurant where I am considering taking some friends when I've moved in with my bf (as it's near where we shall live). So there are many things about the future that are looking bright, even though it is uncertain, and I do believe things will work out for the best as they always do.
So, feeling glum. Well, I guess it's mostly because I feel FRUSTRATED. I feel like my life is on hold. Because of pots I haven't truly worked (I don't consider my own business with very part time hours really working) and now I've made my mind up what I'd like to do, it's too late to apply for this year, so I have to wait until NEXT year. Next AUTUMN! And to top that off, it's not even guaranteed I'd get a place, so if I don't, I'd have to apply again in 12 to start in 13, or apply to do a different route into teaching, but again it would be starting in 2013! Because by the time the application process is over, I'll have missed the deadline for anything starting in 2012. So I basically get one chance only, if I don't accepted this year for NEXT, I'm waiting until 20-freakin-13!!!!
It makes me feel afraid and I don't like to feel afraid. It's daunting enough having pots in your life without other things having to be so hard on top of that!
I am trying to be optimistic though and tell myself I'll find a way to work with kids no matter what. If I don't get accepted for the Graduate Teacher Program, I'll find out by next Summer. So then I could get a job either as a teaching assistant or even a job in a pre-school or nursery. Although as I would prefer to be a teacher, I'd probably be best getting a TA job and working up to HLTA (top level) and then if I chose to reapply for GTP I'd have more experience.
I suppose I am feeling bad though because I'm assuming I won't get in- because I am thinking about this on a very bad potsy day and that always makes me afraid and think the worst.
So, what I will have to do is just do everything in my power to make sure I get accepted, so I can begin training in September 2011! And IF I don't, instead of feeling glum and panicky about it now, I will cross that bridge when I come to it! I am after all a big believer in the universe supporting and guiding me...
oh. my. god!
I can't believe how IRONIC this is what just happened!
As I was writing that sentence, an email popped up- just for long enough for me to see the title: THE UNCERTAINTY OF LIFE.
I believe in signs like that. So I will read it when I finish this blog, and I'm sure it will probably be telling me to embrace the uncertainty and not to worry because no one can know what their future holds so there's no point worrying about it!
So, I will just apply for the GTP with the best glowing references and glowing self report I can muster, and then pray and hope and ask my angels to pull out all the stops (I believe in angels and regularly ask them for help and they always do help- my driving test story is a class example of that!).
Then IF I don't get a place, well I will accept that 'it wasn't meant to be' and accept that the universe is steering me in a different direction, and that even though it wasn't in my plan to go that way, everything will turn out all right if I just have faith and trust!
Wow, I feel much, MUCH better now! hehe. Blogging is always so cathartic for me!
So, despite dysautonomia, I went out walking at the weekend in very hot weather and enjoyed most of it! Didn't walk as far due to the heat, but saw some very pretty countryside and took pretty pictures. Passed a trout fishery where they sell fresh trout, which we are going to buy one day for our tea! Yum yum!
Also, last week I went out with friends to a restaurant and had a lovely time chatting and catching up, and tomorrow I am going out for a friends birthday- and will no doubt end up dancing. Even though I have felt uber crappy today, I am determined to go as I've been looking forward to this night for months!
Oh, and today me and my Mum found a gorgeous lounge bar/restaurant where I am considering taking some friends when I've moved in with my bf (as it's near where we shall live). So there are many things about the future that are looking bright, even though it is uncertain, and I do believe things will work out for the best as they always do.
Wednesday 26 May 2010
An Amazing Experience.
I had an amazing experience yesterday. I woke up with a normal pulse!
I started taking liquorice root as I read a number of posts by people on the DINET forums who were saying how it had helped them.
For me to wake up with a normal pulse just sitting was amazing (usually, thanks to Inappropriate Sinus Tachycardia, I can always feel my heart racing) but I also checked out how I felt standing, and I felt fine... so of course I put my bp cuff on and checked my vitals.
112/69, pulse 85
So then I RAN upstairs and checked my vitals again.
110/75, pulse 112
After that I brushed my teeth (standing) for a couple of minutes and then checked again.
104/80, pulse 70
I could NOT believe it.
The strange thing was, I wasn't feeling good at all- I felt really drained and woozy. But, upon seeing my heart rate was so normal, I decided to finally do all the cleaning and tidying I'd been putting off. So,
I cleared away the clothes and coat-hangers I'd left out, I tidied my desk, I hoovered my room and the dining room and the conservatory, I danced, I did energetic knee lifts, I danced while lifting weights, I did sit ups and as if that wasn't enough I did 250 steps on level 3 resistance on my 'air stepper exerciser' and after THAT I ran on the spot for 10 minutes without stopping.
All while monitering my heart rate and keeping it around 140-160bpm.
Today, I feel exhausted and my body aches- but I haven't crashed. I'm not having a 'potsy' day or feeling awful- just very, very tired from all that activity and achy from the sit ups and weights.
My heart rate hasn't stayed normal today but the peculiar thing is I am still getting some normal readings- for example although it was elevated this morning, this afternoon (after my second dose of liquorice) my sitting heart rate was 60bpm. (It's usually 80-90).
My bp has been fluctuating a lot but I am getting some better readings with that too- in the 100s rather than the 80s for the systolic and in the 60s, 70s and even 80s for the diastolic rather than the 50s and 40s.
I went to the Drs today and got my prescription of diltiazem, but I haven't bothered to take one yet and may not if these good results continue.
It's strange and I am not getting my hopes up too much, but it's the most positive result I've had in trying something new, ever.
I started taking liquorice root as I read a number of posts by people on the DINET forums who were saying how it had helped them.
For me to wake up with a normal pulse just sitting was amazing (usually, thanks to Inappropriate Sinus Tachycardia, I can always feel my heart racing) but I also checked out how I felt standing, and I felt fine... so of course I put my bp cuff on and checked my vitals.
112/69, pulse 85
So then I RAN upstairs and checked my vitals again.
110/75, pulse 112
After that I brushed my teeth (standing) for a couple of minutes and then checked again.
104/80, pulse 70
I could NOT believe it.
The strange thing was, I wasn't feeling good at all- I felt really drained and woozy. But, upon seeing my heart rate was so normal, I decided to finally do all the cleaning and tidying I'd been putting off. So,
I cleared away the clothes and coat-hangers I'd left out, I tidied my desk, I hoovered my room and the dining room and the conservatory, I danced, I did energetic knee lifts, I danced while lifting weights, I did sit ups and as if that wasn't enough I did 250 steps on level 3 resistance on my 'air stepper exerciser' and after THAT I ran on the spot for 10 minutes without stopping.
All while monitering my heart rate and keeping it around 140-160bpm.
Today, I feel exhausted and my body aches- but I haven't crashed. I'm not having a 'potsy' day or feeling awful- just very, very tired from all that activity and achy from the sit ups and weights.
My heart rate hasn't stayed normal today but the peculiar thing is I am still getting some normal readings- for example although it was elevated this morning, this afternoon (after my second dose of liquorice) my sitting heart rate was 60bpm. (It's usually 80-90).
My bp has been fluctuating a lot but I am getting some better readings with that too- in the 100s rather than the 80s for the systolic and in the 60s, 70s and even 80s for the diastolic rather than the 50s and 40s.
I went to the Drs today and got my prescription of diltiazem, but I haven't bothered to take one yet and may not if these good results continue.
It's strange and I am not getting my hopes up too much, but it's the most positive result I've had in trying something new, ever.
Monday 24 May 2010
Summer at LAST!
Okay so just a week ago it was cold enough for frost (stupid English weather and climate change- May should NOT be that cold!!!) and now it's like it should be- hot and sunny and lovely.
Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.
So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.
Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.
Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.
Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).
I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.
I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.
I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/
Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.
So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.
Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.
Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.
Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).
I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.
I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.
I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/
Friday 21 May 2010
Felt well today!
This is most peculiar! I will never understand this disorder. Last night I went out with friends (it was lovely to see them and catch up, I've been more anti-social than usual the past few months with feeling so lacking in energy), ate late, drank less than I would normally (water I mean!) and went to bed late, so I was expecting to wake up this morning feeling awful and... I didn't. On the contrary, I felt better than I have in ages.
I always feel better in the summer/heat. I assumed it was a SAD thing and that I like getting more light... but I'm suspecting there could be more to it than that, since last week it was VERY cold for the time of year; as soon as it's warmed up I feel lots better.
Makes me wonder if my fatigue could be to do with vitamin D deficiency, and getting some sunlight on my skin is alleviating it. Although I can't figure out why my blood pressure was so much BETTER today in all this heat. It's supposed to make it lower?!!
I'm very puzzled. POTs is so frustrating; I like to understand things and I can't understand why the heat would make me feel BETTER?!!! I also felt a lot better when I was on holiday too.
Also, despite still having tachy when moving about, when at rest my heart rate has felt, well, normal. Now, normal for me is still probably high but I can usually feel it banging away all the time so it's really bizarre that I can't, and I'm not currently taking any meds for it either.
So strange. But hey, whatever it's done, I am pleased!
Shame it can't be attributed to the delicious melting chocolate pudding I ate last night. I would love to have a healthy reason to eat one of those every day!
I always feel better in the summer/heat. I assumed it was a SAD thing and that I like getting more light... but I'm suspecting there could be more to it than that, since last week it was VERY cold for the time of year; as soon as it's warmed up I feel lots better.
Makes me wonder if my fatigue could be to do with vitamin D deficiency, and getting some sunlight on my skin is alleviating it. Although I can't figure out why my blood pressure was so much BETTER today in all this heat. It's supposed to make it lower?!!
I'm very puzzled. POTs is so frustrating; I like to understand things and I can't understand why the heat would make me feel BETTER?!!! I also felt a lot better when I was on holiday too.
Also, despite still having tachy when moving about, when at rest my heart rate has felt, well, normal. Now, normal for me is still probably high but I can usually feel it banging away all the time so it's really bizarre that I can't, and I'm not currently taking any meds for it either.
So strange. But hey, whatever it's done, I am pleased!
Shame it can't be attributed to the delicious melting chocolate pudding I ate last night. I would love to have a healthy reason to eat one of those every day!
Thursday 20 May 2010
in need of a vent...
Okay, so it looks like I'm not going to be able to try DDAVP. Despite it being listed on pots place as being helpful, and despite me having symptoms of dehydration, excessive thirst, urinary frquency, and low blood pressure (all of which it can help to alleviate), because I don't have what it's PRESCRIBED FOR (diabetes insipidus) it looks like I can't have it. Drs seem like they aren't willing to prescribe stuff "off label".
I have a feeling I'm going to be one of the worst patients; taking myself off my medication after a month because I feel so dreadful, asking to try medications I'm "not allowed", asking for blood tests for this, that and the other on a quest to rule out further problems, then questioning the Dr on what medications I am prescribed before agreeing to take them!
I just keep in mind what Bernie Siegal said in his brilliant book whose name I have forgotten, but it's about Drs, patients and 'healing' (living as well as you can with what you've got): the people who are the most 'difficult' patients, who aren't passive about their treatments, don't take things lying down, but question and are assertive and inquisitve, most often end up doing better.
My philosophy is if a medication is making me feel worse than I do without it, there is no point taking it, I just hope my specialist doesn't give me grief for rejecting the beta blocker so quickly (feeling like a zombie for a MONTH is long enough for me!!!) and wants to try me back on it, or a smaller dose, because I don't even want to entertain the idea of beta blockers anymore as I read they put you more at risk of diabetes!
I'm going to seem like such a difficult patient if I start refusing my medication...
BUT dear Bernie was a wise and very compassionate Dr so he must be right- difficult patients do better, so I'm going to stick at being awkward. It is after all MY body, I'm not putting anything into it I'm not happy about!
I have a feeling I'm going to be one of the worst patients; taking myself off my medication after a month because I feel so dreadful, asking to try medications I'm "not allowed", asking for blood tests for this, that and the other on a quest to rule out further problems, then questioning the Dr on what medications I am prescribed before agreeing to take them!
I just keep in mind what Bernie Siegal said in his brilliant book whose name I have forgotten, but it's about Drs, patients and 'healing' (living as well as you can with what you've got): the people who are the most 'difficult' patients, who aren't passive about their treatments, don't take things lying down, but question and are assertive and inquisitve, most often end up doing better.
My philosophy is if a medication is making me feel worse than I do without it, there is no point taking it, I just hope my specialist doesn't give me grief for rejecting the beta blocker so quickly (feeling like a zombie for a MONTH is long enough for me!!!) and wants to try me back on it, or a smaller dose, because I don't even want to entertain the idea of beta blockers anymore as I read they put you more at risk of diabetes!
I'm going to seem like such a difficult patient if I start refusing my medication...
BUT dear Bernie was a wise and very compassionate Dr so he must be right- difficult patients do better, so I'm going to stick at being awkward. It is after all MY body, I'm not putting anything into it I'm not happy about!
Tuesday 18 May 2010
New Mood New 'tude
That's attitude btw.
Okay, so I haven't blogged in a while. In a nutshell, the beta blocker I was put on turned me into a total zombie. Shame, because at first I felt better. I could stand and not feel 'weird', I wasn't as fidgety and 'wired' all the time (which I've realised is like the feeling of being constantly stressed. That's how my body feels, even though mentally I'm not stressed at all).
It's been unpleasant having those symptoms creeping back, but I've chosen them over the zombie-state. (ZS). ZS was making me even less of myself than POTS ever has. It was stripping away the essence of me- my personality, my enthusiasm for things. I decided it just wasn't worth it.
Also, I must admit I am a little bit of a pill phobic. Although 'phobic' is the wrong word. I'm not afraid to take pills, I just don't like the fact that nobody can say for sure the long term consequences of taking pills to assuage the symptoms when no one knows what causes the disorder. I guess I'm not afraid of the pills per se, but of the unknown long term effects. Of getting 'something else' on top of the not-fun-caboodle that is POTS!
So I've pretty much decided, as long as I can function okay without pills then I'm not going to take them. I had been hoping that a 'pill for POTS' would improve my quality of life (like the pill for my overactive bladder does) but the first one I tried didn't, and the next suggestion by my Dr is not something I'd be comfortable trying (it works directly on the heart and has some very bizarre potential side effects- I'm not keen on the idea of things affecting my heart because of my belief that the excess heart rate is not the problem; I'd rather take a pill that works on something else [blood pressure or circulation for example] and slows the heart as a consequence) So, I think for now at least, I'll do without. Although I am waiting for some blood tests (possibly for Diabetes Insipidus, though they couldn't tell me) to see if I can take DDAVP. I requested this due to my constant feeling of dehydration (I should NOT be thirsty when I drink 4 litres every day) and to help my wacky bladder. It's a case of waiting on the results so 'watch this space'...
So, what have I been doing whilst I was a doped up zombie? Well, deciding on my future career, because I AM going to have one for as long as I can last, POTS be damned! My plan is do the training, try the job full time, if that's too much go to part time. I'm lucky that I trained in hypnotherapy as I can do that from home on the days I'm not at work, if I go to part time.
So, it's only taken me 9 years to figure that out. 9 must be my lucky number, it took 9 years for me to get diagnosed as well. Maybe I should drink NINE litres a day, then I might not feel thirsty?
I have also been out walking a lot. Strangely, I'm a somewhat 'Paradoxical Potsy' in that, even if I feel dreadful, when I walk I start feeling some improvements in my symptoms. I say some because I'm always tachycardic, I'm always tired to some degree, I have this 'background dizziness' that I'm just used to and that only shocks me when I get The Helium Balloon(tm) but that tends to happen when I'm sitting, more often than not. After walking a few miles, I'll get a headache, sometimes rotten neck pain too. But, I feel more ALIVE. More awake, more alert. I think getting my blood flowing has something to do with it. When I'm sitting or resting my blood pressure falls and I feel a bit bloody horrible. When I'm walking, I get other nasties that make me THINK 'oh god I want to sit down, I can't go on much longer' but go on I do and sometimes, well sometimes it's not pleasureable but at least I'm not deconditioned, but quite often it is more pleasurable than not (now the weather is warmer and my hormones are calmer) and I get to see nice things and take pretty pictures. Oh, and I also get a sense of achievement. If it wasn't for my boyfriend I know I would not be pushing myself as far because I'd have no reason to, but walking with him I do, so that's what I've been doing. If not for him, I might have gotten into a rut of thinking I was 'too tired' to do it and not realised just how strange my body can be- sometimes no matter how bad I feel before the walk, I can still walk- not always as far and certainly not with the zest and vigour I'd like to be walking, but I can do a lot to say my heart is doing what it's doing, and for that reason I actually feel like 'Hey, I'm superwoman. So, this walk might not have made YOU feel tired, but you come back to me and do the walk when you have a heart rate of 140-180 and then I'll be impressed.'
To other non Potsies I may seem 'weak' or 'unfit' for being so tired after what's a relatively 'easy' walk. But to myself I know that every walk I do is an amazing feat of endurance and I'm proud of my body for carrying me through it, despite all the other stuff it's got goin' on!
So, that's what I've been doing- amazing feats of endurance. And lately, I've been enjoying them. Me and my boyfriend are exploring a new area of wonderful natural beauty and it makes me glad to be alive, whatever the state of my malfunctioning nervous system.
So, with that in mind, I decided to change this blog a little. Rather than writing about the POTS itself, and how that has affected me, I've decided I'm going to write about the lovely things I've felt, done, seen and experienced DESPITE dysautonomia. I'm not going to think about the spoons I've lost because of it, or the life changes I've had to make. I'm going to think about the better person I am, how I've learnt to appreciate the 'little things' that so many take for granted.
My life is full of riches, because I take the time to smell the roses. (Actually, it's Gorse. If you have Gorse growing anywhere near you, you have GOT to smell it. It's the most delicious smell- like coconuts mingled with a sweeter scent. It reminds me a little of palmolive milk and honey hand wash- only it's better because it's natural).
So, I'm taking the time to smell the Gorse. If my nose gets prickled in the process a little, well never mind- it's worth it. Every Gorse bush has its thorns.
So- the new mood and the new attitude for this journal is celebrating the beauty of life, DESPITE dysautonomia. Because it can't take away my appreciation and gratitude for the beautiful and enjoyable things in this world. And the amazing thing about the mind is, you get more of what you focus on. So focusing on what's amazing and wonderful means that my life will be amazing and wonderful DESPITE dysautonomia.
So from now on, I'm going to share the great things I've done, seen and experienced DESPITE dysautonomia. I will of course still share from time to time how I'm feeling and how I'm doing. I'm not a one dimensional Polly-anna. I still struggle and get down and frustrated at times. But more importantly, I 'bounce back', I'm tenacious, I'm strong even when my body is weakened.
DESPITE dysautonomia, I'm a wonderful person and I can have a wonderful life. So, I'm going to celebrate that.
Okay, so I haven't blogged in a while. In a nutshell, the beta blocker I was put on turned me into a total zombie. Shame, because at first I felt better. I could stand and not feel 'weird', I wasn't as fidgety and 'wired' all the time (which I've realised is like the feeling of being constantly stressed. That's how my body feels, even though mentally I'm not stressed at all).
It's been unpleasant having those symptoms creeping back, but I've chosen them over the zombie-state. (ZS). ZS was making me even less of myself than POTS ever has. It was stripping away the essence of me- my personality, my enthusiasm for things. I decided it just wasn't worth it.
Also, I must admit I am a little bit of a pill phobic. Although 'phobic' is the wrong word. I'm not afraid to take pills, I just don't like the fact that nobody can say for sure the long term consequences of taking pills to assuage the symptoms when no one knows what causes the disorder. I guess I'm not afraid of the pills per se, but of the unknown long term effects. Of getting 'something else' on top of the not-fun-caboodle that is POTS!
So I've pretty much decided, as long as I can function okay without pills then I'm not going to take them. I had been hoping that a 'pill for POTS' would improve my quality of life (like the pill for my overactive bladder does) but the first one I tried didn't, and the next suggestion by my Dr is not something I'd be comfortable trying (it works directly on the heart and has some very bizarre potential side effects- I'm not keen on the idea of things affecting my heart because of my belief that the excess heart rate is not the problem; I'd rather take a pill that works on something else [blood pressure or circulation for example] and slows the heart as a consequence) So, I think for now at least, I'll do without. Although I am waiting for some blood tests (possibly for Diabetes Insipidus, though they couldn't tell me) to see if I can take DDAVP. I requested this due to my constant feeling of dehydration (I should NOT be thirsty when I drink 4 litres every day) and to help my wacky bladder. It's a case of waiting on the results so 'watch this space'...
So, what have I been doing whilst I was a doped up zombie? Well, deciding on my future career, because I AM going to have one for as long as I can last, POTS be damned! My plan is do the training, try the job full time, if that's too much go to part time. I'm lucky that I trained in hypnotherapy as I can do that from home on the days I'm not at work, if I go to part time.
So, it's only taken me 9 years to figure that out. 9 must be my lucky number, it took 9 years for me to get diagnosed as well. Maybe I should drink NINE litres a day, then I might not feel thirsty?
I have also been out walking a lot. Strangely, I'm a somewhat 'Paradoxical Potsy' in that, even if I feel dreadful, when I walk I start feeling some improvements in my symptoms. I say some because I'm always tachycardic, I'm always tired to some degree, I have this 'background dizziness' that I'm just used to and that only shocks me when I get The Helium Balloon(tm) but that tends to happen when I'm sitting, more often than not. After walking a few miles, I'll get a headache, sometimes rotten neck pain too. But, I feel more ALIVE. More awake, more alert. I think getting my blood flowing has something to do with it. When I'm sitting or resting my blood pressure falls and I feel a bit bloody horrible. When I'm walking, I get other nasties that make me THINK 'oh god I want to sit down, I can't go on much longer' but go on I do and sometimes, well sometimes it's not pleasureable but at least I'm not deconditioned, but quite often it is more pleasurable than not (now the weather is warmer and my hormones are calmer) and I get to see nice things and take pretty pictures. Oh, and I also get a sense of achievement. If it wasn't for my boyfriend I know I would not be pushing myself as far because I'd have no reason to, but walking with him I do, so that's what I've been doing. If not for him, I might have gotten into a rut of thinking I was 'too tired' to do it and not realised just how strange my body can be- sometimes no matter how bad I feel before the walk, I can still walk- not always as far and certainly not with the zest and vigour I'd like to be walking, but I can do a lot to say my heart is doing what it's doing, and for that reason I actually feel like 'Hey, I'm superwoman. So, this walk might not have made YOU feel tired, but you come back to me and do the walk when you have a heart rate of 140-180 and then I'll be impressed.'
To other non Potsies I may seem 'weak' or 'unfit' for being so tired after what's a relatively 'easy' walk. But to myself I know that every walk I do is an amazing feat of endurance and I'm proud of my body for carrying me through it, despite all the other stuff it's got goin' on!
So, that's what I've been doing- amazing feats of endurance. And lately, I've been enjoying them. Me and my boyfriend are exploring a new area of wonderful natural beauty and it makes me glad to be alive, whatever the state of my malfunctioning nervous system.
So, with that in mind, I decided to change this blog a little. Rather than writing about the POTS itself, and how that has affected me, I've decided I'm going to write about the lovely things I've felt, done, seen and experienced DESPITE dysautonomia. I'm not going to think about the spoons I've lost because of it, or the life changes I've had to make. I'm going to think about the better person I am, how I've learnt to appreciate the 'little things' that so many take for granted.
My life is full of riches, because I take the time to smell the roses. (Actually, it's Gorse. If you have Gorse growing anywhere near you, you have GOT to smell it. It's the most delicious smell- like coconuts mingled with a sweeter scent. It reminds me a little of palmolive milk and honey hand wash- only it's better because it's natural).
So, I'm taking the time to smell the Gorse. If my nose gets prickled in the process a little, well never mind- it's worth it. Every Gorse bush has its thorns.
So- the new mood and the new attitude for this journal is celebrating the beauty of life, DESPITE dysautonomia. Because it can't take away my appreciation and gratitude for the beautiful and enjoyable things in this world. And the amazing thing about the mind is, you get more of what you focus on. So focusing on what's amazing and wonderful means that my life will be amazing and wonderful DESPITE dysautonomia.
So from now on, I'm going to share the great things I've done, seen and experienced DESPITE dysautonomia. I will of course still share from time to time how I'm feeling and how I'm doing. I'm not a one dimensional Polly-anna. I still struggle and get down and frustrated at times. But more importantly, I 'bounce back', I'm tenacious, I'm strong even when my body is weakened.
DESPITE dysautonomia, I'm a wonderful person and I can have a wonderful life. So, I'm going to celebrate that.
Tuesday 11 May 2010
Decision made and really good news
Something very exciting happened just after I pressed POST on that last blog- my boyfriend texted me with great news- we have a place together! Okay so neither of us has moved from our respective homes as yet but it's really exciting and we're sooo looking forward to making a home together.
In a lot of ways, this is what has been prompting me to make this 'career move'. Because such good things are happening in my personal life, I want to make my work life good too.
So, I am going to go for the graduate teacher training. I have plenty of time to 'experiment' with medications to best manage my condition. (At the moment, I'm not sure if I feel better with the beta blockers or not- in many ways I do, but I also feel really tired a lot of the time, a different kind of fatigue than what I was used to, and I don't like it). I'm hopeful that with time, I'll find a balance that helps more than hinders me. If not, maybe I can manage unmedicated- since I did for 9 years. We'll see anyway.
This allows me time to move house, get settled in, and keep working my part time job, and perhaps add in some further voluntary work in school. I was considering getting a job as a teachers assistant but I might be better off just sticking at what I know and am used to, as I'll be going through a lot of changes as it is with moving, and travelling back here to where I live now, to do this job from the same premises. I figure I can spend some quality time with my Mum when she's retired, maybe holiday/travel a bit with her, and certainly with my boyfriend. And above all, try for improvements in my energy levels. All my other symptoms I can cope with, I just wish I had more energy and focus. Hopefully there will be time to find the right treatment for that; shame I can't afford acupuncture every week as that used to really help boost my energy! Maybe if I have it once a month or something. There's plenty I can try anyway.
Even if my energy DOESN'T improve, I think I'd still enjoy to be busy. Sometimes when I am busy helping at school, I still feel tired but it's different to the fatigue I feel when sitting at home like I am now. That just makes me want to lay down and have a sleep. Sometimes at school I can be really tired but still get enjoyment from being there with the children, so I hope this is how I will feel when I start the training. No doubt it is tiring but I prefer to be tired from doing something worthwhile than just sitting on my butt while my life passes me by...
So, the decision has been made, finally. Come September 2011, I'll begin training to be a teacher (that's assuming I get accepted! And I am going to assume that because I like to be positive). September 2012, I should be qualified, ready to work. So another two years until I start work 'properly' lol. Although doing the GTP will be like working because you get paid a wage to do it whilst you train.
It's all good and I am happy, I just wish I could feel a little less wiped out! My fatigue intimidates me and often makes me wonder if I am capable of doing these things I want to do. I won't let it stop me from trying though. I just wish that I could feel the energy and enthusiasm I know I have in me! I think that above all else is what I hate most about POTS. It just totally ZAPS you. :( I'd give all the money I had even just to feel 'okay', not so drained and listless.
In a lot of ways, this is what has been prompting me to make this 'career move'. Because such good things are happening in my personal life, I want to make my work life good too.
So, I am going to go for the graduate teacher training. I have plenty of time to 'experiment' with medications to best manage my condition. (At the moment, I'm not sure if I feel better with the beta blockers or not- in many ways I do, but I also feel really tired a lot of the time, a different kind of fatigue than what I was used to, and I don't like it). I'm hopeful that with time, I'll find a balance that helps more than hinders me. If not, maybe I can manage unmedicated- since I did for 9 years. We'll see anyway.
This allows me time to move house, get settled in, and keep working my part time job, and perhaps add in some further voluntary work in school. I was considering getting a job as a teachers assistant but I might be better off just sticking at what I know and am used to, as I'll be going through a lot of changes as it is with moving, and travelling back here to where I live now, to do this job from the same premises. I figure I can spend some quality time with my Mum when she's retired, maybe holiday/travel a bit with her, and certainly with my boyfriend. And above all, try for improvements in my energy levels. All my other symptoms I can cope with, I just wish I had more energy and focus. Hopefully there will be time to find the right treatment for that; shame I can't afford acupuncture every week as that used to really help boost my energy! Maybe if I have it once a month or something. There's plenty I can try anyway.
Even if my energy DOESN'T improve, I think I'd still enjoy to be busy. Sometimes when I am busy helping at school, I still feel tired but it's different to the fatigue I feel when sitting at home like I am now. That just makes me want to lay down and have a sleep. Sometimes at school I can be really tired but still get enjoyment from being there with the children, so I hope this is how I will feel when I start the training. No doubt it is tiring but I prefer to be tired from doing something worthwhile than just sitting on my butt while my life passes me by...
So, the decision has been made, finally. Come September 2011, I'll begin training to be a teacher (that's assuming I get accepted! And I am going to assume that because I like to be positive). September 2012, I should be qualified, ready to work. So another two years until I start work 'properly' lol. Although doing the GTP will be like working because you get paid a wage to do it whilst you train.
It's all good and I am happy, I just wish I could feel a little less wiped out! My fatigue intimidates me and often makes me wonder if I am capable of doing these things I want to do. I won't let it stop me from trying though. I just wish that I could feel the energy and enthusiasm I know I have in me! I think that above all else is what I hate most about POTS. It just totally ZAPS you. :( I'd give all the money I had even just to feel 'okay', not so drained and listless.
Friday 7 May 2010
Semi-plan...
Been thinking and researching on the "career options" still.
I found something I'd never even heard of called the Graduate Teacher Program. It enables you to train to become a teacher while you are working in a school as an unqualified teacher.
It's an option that appeals to me in a way because I'd like the experience. I'm getting fed up of academic study now, and whilst this will of course have elements of that, it sounds more "hands on". It's also an advantage to get payed whilst learning.
If I did this, I wouldn't be able to start until September next year, 2011. BUT if I do the part time PGCE, I still wouldn't graduate until June 2012. So, I'd graduate at roughly the same time... yet I think the GTP could be the better option for me. Yes, it's full time so in a way that's harder BUT... I'd be getting (I feel) a better experience. I think I'd feel a lot more confident about getting a job after working in a more hands on way, instead of taking the more academic route again. Despite the fact the academic route involves placements, I like the idea of being at one school for the majority of the training.
So, it's another option I am seriously considering. I could finish my diploma which is coming to an end now, have the rest of this year 'off', go on my Peru adventure in November, move in with my boyfriend at some point later this year or early next year, and live off my savings until I start in September 11 and keep doing my part time hypnotherapy work from here, at my parents. That way, I could spend some quality time with my Mum but get used to living with my boyfriend, before starting the program of work. It might give me chance to get my health in a better place and get a bit fitter too.
I found something I'd never even heard of called the Graduate Teacher Program. It enables you to train to become a teacher while you are working in a school as an unqualified teacher.
It's an option that appeals to me in a way because I'd like the experience. I'm getting fed up of academic study now, and whilst this will of course have elements of that, it sounds more "hands on". It's also an advantage to get payed whilst learning.
If I did this, I wouldn't be able to start until September next year, 2011. BUT if I do the part time PGCE, I still wouldn't graduate until June 2012. So, I'd graduate at roughly the same time... yet I think the GTP could be the better option for me. Yes, it's full time so in a way that's harder BUT... I'd be getting (I feel) a better experience. I think I'd feel a lot more confident about getting a job after working in a more hands on way, instead of taking the more academic route again. Despite the fact the academic route involves placements, I like the idea of being at one school for the majority of the training.
So, it's another option I am seriously considering. I could finish my diploma which is coming to an end now, have the rest of this year 'off', go on my Peru adventure in November, move in with my boyfriend at some point later this year or early next year, and live off my savings until I start in September 11 and keep doing my part time hypnotherapy work from here, at my parents. That way, I could spend some quality time with my Mum but get used to living with my boyfriend, before starting the program of work. It might give me chance to get my health in a better place and get a bit fitter too.
Wednesday 5 May 2010
UGH!
I'm so frustrated. I don't know what I want, because it's all dependent on how I feel with POTS and lately I feel exhausted every day. I mean, I'm sure the bank holiday weekend hasn't really helped: I went out Friday night and even spent 3 hours standing up, dancing. I enjoyed myself but hello exhaustion and the exacerbation of my sore, swollen throat (not sure whether its the infection I got over Easter that my body hasn't quite fought off, a new one or an allergy thing). If I could have rested all weekend I'd probably have been okay, but weekends are the only time I get to see my bf (because I am too busy and tired in the week, working part time and finishing this diploma). My bf loves walking. I do too, but he's super fit and so I nearly always end up pushing myself. I do this because I am stubborn and I think it might just help in the long run, and at least I'm not getting de-conditioned... but man, I am sick to the back teeth of hills. I'm okay walking on the flat but as soon as there's even a slight incline and I'm in tachycardia central, it's like the beta blockers don't touch me anymore.
I'm also having trouble with my hydration because by bbs and my bladder meds interact strangely with one another, so my overactive bladder med isn't as effective, so I'm peeing out what I try to put in. I'm trying to get in at the Doctors to get some DDAVP as my pots Dr said I might be able to try it (I'd better be!) and I feel like it would really help as I believe a lot of my symptoms are because of the fact I am always dehydrated, or verging on it, no matter how much I drink.
So, I just seem to spend every week feeling like sh** just so that I can push myself through another weekend. Don't get me wrong, I always enjoy time with my bf, but I sleep terribly (I just cannot get used to someone else being there beside me, even if I get to sleep I wake up numerous times because I am such a light sleeper- and I've tried all sorts of herbs and OTC sleep aids). So I lose sleep, then push myself through long walks, then spend the whole week recovering to do it all again the following weekend.
I'm feeling even more exhausted lately than normal as I just can't seem to recover from this infection I had. My throat hasn't got back to normal and after my busy bank holiday weekend it now feels worse.
I felt relatively human for about 10 minutes this morning, then the feeling of exhaustion kicked in again. If just sitting at the computer browsing for pleasure is so tiring, how can I be even thinking of putting myself through 17 months of hard studying?
I want to be able to do it, but just getting out of bed this morning has exhausted me. How can I drive to train stations, sit on trains, wait for buses, walk to classes, concentrate and take information in, walk and wait for buses again, wait for train, drive home and then do the same thing again the next day AND whatever work assignments I am expected to do as well??? I WANT to be able to do it, but right now I don't feel capable. I don't know whether to bite the bullet and push myself and hope that I somehow find the strength... or whether to admit defeat and accept this lesser job.
It's the studying that scares me the most though, not doing the job. If I could just somehow get through the 17 months of study and get the qualification. I know the job itself isn't easy (both my parents are teachers, I know a lot of teachers through volunteering at Mum's school, one of my best friends is a teacher) but I think I could do it part time and keep doing my hypnotherapy the rest of the time. I'd love to do that!
So maybe I will have to push myself through the scary studying part of it.
I just really don't want it to affect my relationship. I could do it if I was single and still living at home and all my spare time when not studying could be spent on sleeping/resting. But I can't live like that now.
All I can hope is I can get on this DDAVP and it helps me get hydrated and improves my symptoms further. I can also hope that this exhaustion lately is because of the infection I have/had and is just a temporary exacerbation of worsened fatigue.
At least I have time to think things through I guess.
I want to do the course but I'll be frank, I'm terrified I'm taking on too much.
I'm also having trouble with my hydration because by bbs and my bladder meds interact strangely with one another, so my overactive bladder med isn't as effective, so I'm peeing out what I try to put in. I'm trying to get in at the Doctors to get some DDAVP as my pots Dr said I might be able to try it (I'd better be!) and I feel like it would really help as I believe a lot of my symptoms are because of the fact I am always dehydrated, or verging on it, no matter how much I drink.
So, I just seem to spend every week feeling like sh** just so that I can push myself through another weekend. Don't get me wrong, I always enjoy time with my bf, but I sleep terribly (I just cannot get used to someone else being there beside me, even if I get to sleep I wake up numerous times because I am such a light sleeper- and I've tried all sorts of herbs and OTC sleep aids). So I lose sleep, then push myself through long walks, then spend the whole week recovering to do it all again the following weekend.
I'm feeling even more exhausted lately than normal as I just can't seem to recover from this infection I had. My throat hasn't got back to normal and after my busy bank holiday weekend it now feels worse.
I felt relatively human for about 10 minutes this morning, then the feeling of exhaustion kicked in again. If just sitting at the computer browsing for pleasure is so tiring, how can I be even thinking of putting myself through 17 months of hard studying?
I want to be able to do it, but just getting out of bed this morning has exhausted me. How can I drive to train stations, sit on trains, wait for buses, walk to classes, concentrate and take information in, walk and wait for buses again, wait for train, drive home and then do the same thing again the next day AND whatever work assignments I am expected to do as well??? I WANT to be able to do it, but right now I don't feel capable. I don't know whether to bite the bullet and push myself and hope that I somehow find the strength... or whether to admit defeat and accept this lesser job.
It's the studying that scares me the most though, not doing the job. If I could just somehow get through the 17 months of study and get the qualification. I know the job itself isn't easy (both my parents are teachers, I know a lot of teachers through volunteering at Mum's school, one of my best friends is a teacher) but I think I could do it part time and keep doing my hypnotherapy the rest of the time. I'd love to do that!
So maybe I will have to push myself through the scary studying part of it.
I just really don't want it to affect my relationship. I could do it if I was single and still living at home and all my spare time when not studying could be spent on sleeping/resting. But I can't live like that now.
All I can hope is I can get on this DDAVP and it helps me get hydrated and improves my symptoms further. I can also hope that this exhaustion lately is because of the infection I have/had and is just a temporary exacerbation of worsened fatigue.
At least I have time to think things through I guess.
I want to do the course but I'll be frank, I'm terrified I'm taking on too much.
Tuesday 4 May 2010
More on my potential crazyness...
There's a 'part time' course that starts in February next year.
That would mean I'd complete this diploma any day now (one more project to submit!). Have the summer off. Probably the Autum and the Winter too. Go to Peru for 3 weeks for the 'holiday of a lifetime'. Get home for Christmas, holiday with the family. Get home for New Year... and work hard until July the following year (2012) to get this qualification.
The alternative depends on how long the full time course that starts in September 2011 is. If I graduate at the same time, I might as well wait until September and do it full time, because this course is in my locality. The part time one would involve travelling by train two days a week which is okay in theory but I don't travel well when I'm tired, and living with dysautonomia is tiring even WITHOUT taking on a challenge like this!
But then for the full time one I'd still be driving in every day... and maybe, just maybe, 'part time' would be easier on me. 2 days to study, the remaining days to rest and do the work. Because if I am doing 7 days a week of classes, when am I going to find the time and energy to do the work?? I really don't know if I could handle a schedule like that. :/ Maybe I am better off travelling out of town.
Wow. I seriously have a lot to think about.
That would mean I'd complete this diploma any day now (one more project to submit!). Have the summer off. Probably the Autum and the Winter too. Go to Peru for 3 weeks for the 'holiday of a lifetime'. Get home for Christmas, holiday with the family. Get home for New Year... and work hard until July the following year (2012) to get this qualification.
The alternative depends on how long the full time course that starts in September 2011 is. If I graduate at the same time, I might as well wait until September and do it full time, because this course is in my locality. The part time one would involve travelling by train two days a week which is okay in theory but I don't travel well when I'm tired, and living with dysautonomia is tiring even WITHOUT taking on a challenge like this!
But then for the full time one I'd still be driving in every day... and maybe, just maybe, 'part time' would be easier on me. 2 days to study, the remaining days to rest and do the work. Because if I am doing 7 days a week of classes, when am I going to find the time and energy to do the work?? I really don't know if I could handle a schedule like that. :/ Maybe I am better off travelling out of town.
Wow. I seriously have a lot to think about.
Maybe I'm crazy, but...
I keep looking out for learning mentor jobs, but there haven't been ANY. So rare.
Teaching assistant jobs are not very well paid and the government might be axing them altogther, depending on who comes into power, so I don't really want to get into that.
I'm seriously considering doing my post grad certificate in education, which would allow me to be a teacher. I nearly did this in 2008 but chickened out. I was afraid that I wouldn't be able to 'hack it' with my very low stress threshold.
However, now I'm diagnosed and being medicated, I'm a bit more hopeful that I can cope better with things. And what has always really made my heart sink is the feeling that I've been under-achieving due to this illness. Maybe if I actually gave it a go, I could do it. Sure, it might be hard, but so was getting my degree when I was undiagnosed and an emotional wreck having panic attacks and verging on agoraphobia because I didn't know what was wrong with me. If I can do THAT, I could do this, I know I could. It's just whether or not I want to choose to put myself through yet MORE hard work.
I'd like to try and be a teacher. I wish I could try it BEFORE doing the course, LOL. But I can't. I have to do the course first, and it's doing the course itself that scares more more than doing the actual job, because pots has made academic stuff so much more of a struggle for me, when it used to come so naturally.
But if I don't give it a try, I might end up regretting my under-achievement due to being afraid to try. If I tried and failed, then at least I tried. But if I don't try, how can I give myself the chance to succeed?
The course for September is full anyway, so I would have to wait until September 2011 before I could even start! So, that gives me a while to consider it (I'd have to apply this summer), and plenty of time to get my meds for the pots sorted out and working! During that time I might get a job as a TA so I can at least get used to working full time and save some money, and then I'll have time to see how I cope with that and that should give an indication of whether I'd be able to cope with the extra responsibilities of being a teacher.
One reason I didn't go for it in 2008 was because I didn't want to give up my hypnotherapy. But I think if I worked full time in any job I'd most likely have to give that up, as I'd need time for myself and wouldn't want to completely drain all my energy! Paradoxically, if I were to qualify as a teacher, I could earn more being a part time teacher than a full time teachers assistant, so there is the opportunity for me to do both teaching and hypnotherapy together, which I like the idea of- even if I couldn't do that right away and had to get full time experience in a teaching role for a while, the fact it's an option is appealing.
To think of this, I feel excited and quite motivated. The thought of all the work is scary, because I'm already tired of academic work, but I will get a bit of a break at least. And my Mum will be retired then and could help me out! (She is a teacher).
I just think there stands to be more opportunities in teaching than in being a TA or learning mentor. There are many more jobs, better pay, more flexibility and the chance that, if my health were to improve, I could take on more responsibilities if I wanted to.
Plus I think starting in September next year would be a good thing as I could have "a year out" to move in with my boyfriend, get used to being more independent, and maybe even work a job too to get some more money saved up.
I've faced and overcome challenges before, maybe I'm ready for the next one now...
It's VERY scary, I can't even be sure at this stage if it's 'the right thing' but at least I have time to think it over.
Teaching assistant jobs are not very well paid and the government might be axing them altogther, depending on who comes into power, so I don't really want to get into that.
I'm seriously considering doing my post grad certificate in education, which would allow me to be a teacher. I nearly did this in 2008 but chickened out. I was afraid that I wouldn't be able to 'hack it' with my very low stress threshold.
However, now I'm diagnosed and being medicated, I'm a bit more hopeful that I can cope better with things. And what has always really made my heart sink is the feeling that I've been under-achieving due to this illness. Maybe if I actually gave it a go, I could do it. Sure, it might be hard, but so was getting my degree when I was undiagnosed and an emotional wreck having panic attacks and verging on agoraphobia because I didn't know what was wrong with me. If I can do THAT, I could do this, I know I could. It's just whether or not I want to choose to put myself through yet MORE hard work.
I'd like to try and be a teacher. I wish I could try it BEFORE doing the course, LOL. But I can't. I have to do the course first, and it's doing the course itself that scares more more than doing the actual job, because pots has made academic stuff so much more of a struggle for me, when it used to come so naturally.
But if I don't give it a try, I might end up regretting my under-achievement due to being afraid to try. If I tried and failed, then at least I tried. But if I don't try, how can I give myself the chance to succeed?
The course for September is full anyway, so I would have to wait until September 2011 before I could even start! So, that gives me a while to consider it (I'd have to apply this summer), and plenty of time to get my meds for the pots sorted out and working! During that time I might get a job as a TA so I can at least get used to working full time and save some money, and then I'll have time to see how I cope with that and that should give an indication of whether I'd be able to cope with the extra responsibilities of being a teacher.
One reason I didn't go for it in 2008 was because I didn't want to give up my hypnotherapy. But I think if I worked full time in any job I'd most likely have to give that up, as I'd need time for myself and wouldn't want to completely drain all my energy! Paradoxically, if I were to qualify as a teacher, I could earn more being a part time teacher than a full time teachers assistant, so there is the opportunity for me to do both teaching and hypnotherapy together, which I like the idea of- even if I couldn't do that right away and had to get full time experience in a teaching role for a while, the fact it's an option is appealing.
To think of this, I feel excited and quite motivated. The thought of all the work is scary, because I'm already tired of academic work, but I will get a bit of a break at least. And my Mum will be retired then and could help me out! (She is a teacher).
I just think there stands to be more opportunities in teaching than in being a TA or learning mentor. There are many more jobs, better pay, more flexibility and the chance that, if my health were to improve, I could take on more responsibilities if I wanted to.
Plus I think starting in September next year would be a good thing as I could have "a year out" to move in with my boyfriend, get used to being more independent, and maybe even work a job too to get some more money saved up.
I've faced and overcome challenges before, maybe I'm ready for the next one now...
It's VERY scary, I can't even be sure at this stage if it's 'the right thing' but at least I have time to think it over.
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