I am not having a good day. My tummy's been asleep the last couple of days so I've been nauseated, and none of my meds seem to have been absorbing (which won't be helping the stomach either) so I'm in a lot of pain of one kind and another and a bit fed up.
It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.
I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.
So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.
There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.
This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.
Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.
One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."
Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.
At Both Ends of the Stethoscope.
Wednesday, 13 June 2012
Tuesday, 29 May 2012
Thoughts in the Run Up to My (Not) Wedding
I'm getting married on Saturday.
Well.
I'm having a Civil Partnership on Thursday, and then a blessing in a Christian church on Saturday which will be the bit that looks like a traditional wedding - the bit that our family and friends are invited to.
I've been thinking about it a lot. About marriage equality, about privilege, about my life and how it might change.
Firstly, I'm in love, I'm excited to celebrate our relationship, to see our friends and family and to share with them, to use the beautiful liturgy we've put together and to sing some of my favourite hymns, to eat the delicious food, to do a bit of dancing in my swishy dress and decorated wheelchair and then to escape with my wife (sorry, getting carried away again, most civil of partners) for a few days to a wee B and B for a holiday from all this planning!
We live in a country where it is possible for us to have most of the legal rights of a married couple, our close family have been broadly supportive of our partnership, we have the acceptance of some members of our religious group - by no means all - and we can have a religious ceremony - if not in our own church. We are monogamous in a society where polyamorous relationships are often misunderstood and are not easily afforded the same legal protections we will enjoy. We are both white, we are both young, we are both university educated.
I'm really aware that people will notice and think about my impairment in the context of the wedding. People will think that I'm lucky Beanie chose me, that she stayed even when my body fell apart. We deliberately omited 'in sickness and in health' or variants thereof from the vows. She will never have me in health, not in the way that that statement was intended. I can't bear the knowledge that many people think she is foolish for doing this - foolish for shackling herself to someone who has so many needs and so little earning potential.
She can't stand it either. She is exciting about pooling our resources in 'tiny communism' as she's taken to calling it. She will always earn more than me, but we will go into this as equals - both contributing to the pot what we have - wages, benefits, time, energy, passion, compassion - and both taking out what we need.
My partner identifies as a queer lesbian, I identify as queer in both gender and sexuality (and for me it ties in with my disabled identity), although I also identify as female. We are most frequently seen as a cis lesbian couple in a society that invisibilises bi and pansexuality, asexuality, trans* and genderqueer identity (as well as many other gender and sexual identities). We've tried not to use language that excludes anyone in our liturgy, as we have been excluded by the language of so many wedding ceremonies.
I know that I will need to pace a lot over the weekend, conserve energy so that I can be fully present for the important bits. I also know that there's a lot to do and that Beanie's bad at delegating. I also know that I am incredibly sensitive to being called lazy (to the point that it's called 'the L word' in our home). Need to explain to my mother why lying flat is infinitely easier than sitting is infinitely easier than standing.
We are both children of divorced parents. No top table for us (never relished the thought of a room full of people watching me eating anyway). I have noticed that everyone is trying to be graceful while we try to work out any potential problems.
I do not like to use a title. If I have the option not to use one I won't, if I have to and it's Miss/Mrs then I'll use Miss. Now Ms is more available I choose that. There is no title that I feel drawn to - I love the gender neutral Mx (Mixter), but I don't feel a personal connection to it. I have to decide what title to put on my official documents this week. I guess Ms, but I really don't want anything. When I graduate, at least Dr is gender neutral, but to use it for non medical things feels somehow elitist. I'd just rather not use one.
I've loved these past few months of planning - choosing vows leading to discussions about what we actually promise to each other, inviting guests and getting in touch with people we haven't seen in a long time, listening to gorgeous music and shaping a future.
We're serving vegan food, with gluten free and nut free options. There's stuff that is tummy friendly for me and plenty for guests with dietary requirements that would normally mean a 'special' meal. We've also tried to choose food that folk used to 'meat and two veg' won't find too alienating. I'm worried that if I have a bad tummy day I won't be able to eat with everyone else. That would be very hard I think - although food is far from the point of the day.
We're trying to not exclude any of our guests. Food choices are one example. The ceilidh band are doing 'bread and butter' calling (this is when they use 'bread and butter' instead of 'men and women', which is more inclusive of queer couples etc). They are also calling a couple of sets for the wheelies. We're having a quiet room for folk to rest / escape from the music / take meds. We've provided a timetable beforehand to allow folk to prepare. There will be large print and non black on white orders of service. This is not 'extra' preparation, it's intrinsic to the preparation. 'What is the most inclusive way we can do this?' I'm sure we will make mistakes and I hope for the wisdom to recognise them and the grace to apologise.
We are already married. To us this ceremony is a celebration of a transition that has happened and will continue to happen. That the word 'married' in this context is controversial makes me angry. I find it hard to be measured on this topic because I think that people who spend a lot of energy talking about why I should not be in love could be putting it to much better things. I also do not believe that I should accept discrimination, but I'll love the sinner (as it were).
I've been scolded so much this week for hoping that the weather improves (that the temperature goes down). I guess I must seem like a killjoy to people whose resting heart rate isn't currently in the 120s. I don't want to collapse on my (not) wedding day. Mainly because I don't want to worry folk than because it's a particularly big deal.
Neither of us have particularly socially acceptable bodies. I have a belly and a bottom and body hair. I have lots of scars. My joints don't behave and I have spots. I chose the dress that I loved, that makes me look and feel amazing - it was one of the first times I've chosen an item of clothing focusing on how it makes me feel rather than what it hides. It feels good (but I'm still a bit worried people, read : my mother, will think I'm trying to make a statement).
Speaking of making a statement : the aisle I can walk that distance, but it hurts. I would rather wheel, but I'm worried that people will read into that decision. It will also be the first time a lot of the guests will have seen me using the chair.
These are the things that whirl through my head with 2-4 days to go. These and all the other thoughts I haven't noticed yet, or aren't coherent enough to be written down. I wonder what it will be like to be a (not) bride in a society with such a fixed impression of what that means - but maybe that's another post all together.
Well.
I'm having a Civil Partnership on Thursday, and then a blessing in a Christian church on Saturday which will be the bit that looks like a traditional wedding - the bit that our family and friends are invited to.
I've been thinking about it a lot. About marriage equality, about privilege, about my life and how it might change.
Firstly, I'm in love, I'm excited to celebrate our relationship, to see our friends and family and to share with them, to use the beautiful liturgy we've put together and to sing some of my favourite hymns, to eat the delicious food, to do a bit of dancing in my swishy dress and decorated wheelchair and then to escape with my wife (sorry, getting carried away again, most civil of partners) for a few days to a wee B and B for a holiday from all this planning!
We live in a country where it is possible for us to have most of the legal rights of a married couple, our close family have been broadly supportive of our partnership, we have the acceptance of some members of our religious group - by no means all - and we can have a religious ceremony - if not in our own church. We are monogamous in a society where polyamorous relationships are often misunderstood and are not easily afforded the same legal protections we will enjoy. We are both white, we are both young, we are both university educated.
I'm really aware that people will notice and think about my impairment in the context of the wedding. People will think that I'm lucky Beanie chose me, that she stayed even when my body fell apart. We deliberately omited 'in sickness and in health' or variants thereof from the vows. She will never have me in health, not in the way that that statement was intended. I can't bear the knowledge that many people think she is foolish for doing this - foolish for shackling herself to someone who has so many needs and so little earning potential.
She can't stand it either. She is exciting about pooling our resources in 'tiny communism' as she's taken to calling it. She will always earn more than me, but we will go into this as equals - both contributing to the pot what we have - wages, benefits, time, energy, passion, compassion - and both taking out what we need.
My partner identifies as a queer lesbian, I identify as queer in both gender and sexuality (and for me it ties in with my disabled identity), although I also identify as female. We are most frequently seen as a cis lesbian couple in a society that invisibilises bi and pansexuality, asexuality, trans* and genderqueer identity (as well as many other gender and sexual identities). We've tried not to use language that excludes anyone in our liturgy, as we have been excluded by the language of so many wedding ceremonies.
I know that I will need to pace a lot over the weekend, conserve energy so that I can be fully present for the important bits. I also know that there's a lot to do and that Beanie's bad at delegating. I also know that I am incredibly sensitive to being called lazy (to the point that it's called 'the L word' in our home). Need to explain to my mother why lying flat is infinitely easier than sitting is infinitely easier than standing.
We are both children of divorced parents. No top table for us (never relished the thought of a room full of people watching me eating anyway). I have noticed that everyone is trying to be graceful while we try to work out any potential problems.
I do not like to use a title. If I have the option not to use one I won't, if I have to and it's Miss/Mrs then I'll use Miss. Now Ms is more available I choose that. There is no title that I feel drawn to - I love the gender neutral Mx (Mixter), but I don't feel a personal connection to it. I have to decide what title to put on my official documents this week. I guess Ms, but I really don't want anything. When I graduate, at least Dr is gender neutral, but to use it for non medical things feels somehow elitist. I'd just rather not use one.
I've loved these past few months of planning - choosing vows leading to discussions about what we actually promise to each other, inviting guests and getting in touch with people we haven't seen in a long time, listening to gorgeous music and shaping a future.
We're serving vegan food, with gluten free and nut free options. There's stuff that is tummy friendly for me and plenty for guests with dietary requirements that would normally mean a 'special' meal. We've also tried to choose food that folk used to 'meat and two veg' won't find too alienating. I'm worried that if I have a bad tummy day I won't be able to eat with everyone else. That would be very hard I think - although food is far from the point of the day.
We're trying to not exclude any of our guests. Food choices are one example. The ceilidh band are doing 'bread and butter' calling (this is when they use 'bread and butter' instead of 'men and women', which is more inclusive of queer couples etc). They are also calling a couple of sets for the wheelies. We're having a quiet room for folk to rest / escape from the music / take meds. We've provided a timetable beforehand to allow folk to prepare. There will be large print and non black on white orders of service. This is not 'extra' preparation, it's intrinsic to the preparation. 'What is the most inclusive way we can do this?' I'm sure we will make mistakes and I hope for the wisdom to recognise them and the grace to apologise.
We are already married. To us this ceremony is a celebration of a transition that has happened and will continue to happen. That the word 'married' in this context is controversial makes me angry. I find it hard to be measured on this topic because I think that people who spend a lot of energy talking about why I should not be in love could be putting it to much better things. I also do not believe that I should accept discrimination, but I'll love the sinner (as it were).
I've been scolded so much this week for hoping that the weather improves (that the temperature goes down). I guess I must seem like a killjoy to people whose resting heart rate isn't currently in the 120s. I don't want to collapse on my (not) wedding day. Mainly because I don't want to worry folk than because it's a particularly big deal.
Neither of us have particularly socially acceptable bodies. I have a belly and a bottom and body hair. I have lots of scars. My joints don't behave and I have spots. I chose the dress that I loved, that makes me look and feel amazing - it was one of the first times I've chosen an item of clothing focusing on how it makes me feel rather than what it hides. It feels good (but I'm still a bit worried people, read : my mother, will think I'm trying to make a statement).
Speaking of making a statement : the aisle I can walk that distance, but it hurts. I would rather wheel, but I'm worried that people will read into that decision. It will also be the first time a lot of the guests will have seen me using the chair.
These are the things that whirl through my head with 2-4 days to go. These and all the other thoughts I haven't noticed yet, or aren't coherent enough to be written down. I wonder what it will be like to be a (not) bride in a society with such a fixed impression of what that means - but maybe that's another post all together.
Wednesday, 23 May 2012
Lots of (Good) News
I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :
- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!
I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).
*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.
- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!
I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).
*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.
Saturday, 5 May 2012
Tired
Thanks to lovely GP I no longer feel like I'm fire-fighting constantly. Still, the truth remains that I took this year out to get to grips with and get support for my condition as it was then. 8 months later and a lot has changed - nothing dramatic, just a steady drip drip drip of gradual deterioration - a bit more nausea, a new twinge, another misbehaving joint, another food I can't tolerate, another fall. I don't know my body anymore. I can't help but wonder what life's going to look like a year from now when I'm supposed to be gearing up to start work. Today I'm really tired and a bit scared. I hope it all looks a bit brighter in the morning.
Friday, 4 May 2012
Where I'm At
Had the scope today. They need to do another one because my belly was still full of food even though I fasted all day. She said that this is evidence of delayed gastric emptying and that we'll talk more about it in the appointment. She wants the other one after a longer fast to rule out helicobacter infection* or anything else (on top of the delayed emptying. This doesn't come as a surprise, because delayed gastric emptying was my GP's working diagnosis. It's nice to have some physical evidence of it. And, also, so bloody nice to have a diagnosis that I haven't had to suggest and that people know what it is. That's not to say that it's common or well-understood or anything like that - just that people have at least heard of it. It's nice to know that I've been going down the right path in terms of management.
The procedure itself was not pleasant, but it's quick and the doctor and nurse in with me were really good - telling me that I was doing well, to keep breathing, not to panic etc. I was a bit worried about how to handle the bendiness and autonomic nonsense, but when I said 'so I dislocate easily' and she pointed at my jaw and said "don't you dare" and then chuckled, I knew it'd be alright.
All in all it feels like a positive step, although once again with a new answer, comes a new reality that makes life day-to-day just that little bit harder.
We shall see where it all goes from here.
*helicobacter is a very cool bug, look it up
The procedure itself was not pleasant, but it's quick and the doctor and nurse in with me were really good - telling me that I was doing well, to keep breathing, not to panic etc. I was a bit worried about how to handle the bendiness and autonomic nonsense, but when I said 'so I dislocate easily' and she pointed at my jaw and said "don't you dare" and then chuckled, I knew it'd be alright.
All in all it feels like a positive step, although once again with a new answer, comes a new reality that makes life day-to-day just that little bit harder.
We shall see where it all goes from here.
*helicobacter is a very cool bug, look it up
Monday, 30 April 2012
Fluctuation
Last week I felt fantastic. Well, my tummy was bad, but my joints had relatively little pain and I had lots of energy (again, relatively). As a consequence of being a bit more mobile around the flat I had a couple more faints than usual, but it was worth it.
I got a lot done - things like laundry that are impossible when my joints are bad, but also made sure I took time to rest, to avoid boom/busting. Doing things like crochet, or clearing out my email inbox which require sitting down but make me feel like I'm getting something done are perfect for days like that.
This morning I woke up 3 times during the night with joint pain and the nausea is almost overwhelming. I had plans, but I can't do any of them. In a more accessible flat, if I had my wheelchair up here then I could, but for now I'm on the sofa under a blanket with crochet, the cat and a sick bowl.
There was no warning for this. It wasn't caused by anything I didn't do. Just a night disturbed by pain.
It gets really frustrating - I do so much stuff to keep myself as healthy as possible - special diet, exercises, sleep routine, aids - but sometimes I get days like today that remind me that really these things give me an illusion of having more control than I have. That's a rubbish thing to be reminded of.
Sorry if this makes little sense, I'm tired. Something more cheerful next time, I promise
I got a lot done - things like laundry that are impossible when my joints are bad, but also made sure I took time to rest, to avoid boom/busting. Doing things like crochet, or clearing out my email inbox which require sitting down but make me feel like I'm getting something done are perfect for days like that.
This morning I woke up 3 times during the night with joint pain and the nausea is almost overwhelming. I had plans, but I can't do any of them. In a more accessible flat, if I had my wheelchair up here then I could, but for now I'm on the sofa under a blanket with crochet, the cat and a sick bowl.
There was no warning for this. It wasn't caused by anything I didn't do. Just a night disturbed by pain.
It gets really frustrating - I do so much stuff to keep myself as healthy as possible - special diet, exercises, sleep routine, aids - but sometimes I get days like today that remind me that really these things give me an illusion of having more control than I have. That's a rubbish thing to be reminded of.
Sorry if this makes little sense, I'm tired. Something more cheerful next time, I promise
Friday, 27 April 2012
Endoscopic Gastroscopy
I got a letter yesterday saying that next Friday afternoon I am to have an endoscopy. This came out of the blue. Yes, I've had a gastro referral, but I haven't seen them yet and my GP didn't indicate that I would need them. Allow me to list my frustrations :
1) One week's notice - assumes both that I and the person I will need with me to leave afterwards will not have something else planned *and* that as someone with a complex medical picture I won't have to clear / discuss this procedure with my other health care providers
2) The information leaflet was shockingly bad - not convinced I would've know what the procedure entails if I didn't already
3) The leaflet is very much trying to persuade me to have anaesthetic spray not sedation. I imagine (especially as it'll be a Friday afternoon) that I'll have to fight to be sedated - necessary because the spray wouldn't work on my EDSy throat and my oesophagus has horrible spasms which are likely to happen and I would rather be out of it
4) It won't find anything - I've been on omeprazole for over a year and I'm now on prokinetics. There is nothing in the information about stopping these meds, both of which are pretty effective, so anything they do see will be incidental to the actual problem. I don't know whether to stop them today - tried to phone to ask (normal guidance is to stop anywhere from 2 weeks to 3 months before) but couldn't get through. There are other problems that they might see (e.g. dysphagia, hiatus hernia) but might not record if that's not the reason for referral.
I'm not hugely scared about the procedure itself - yes, I'm more likely to have complications (e.g. perforation) due to my EDS but it's still not hugely likely - and if it does, a hospital with operating theatres and a gastro team is among the best places for it to.
I'm scared that someone will pull one of my joints out when I'm sedated (I'm especially concerned about my neck) and that my weird nervous system reacts oddly to medications, particularly sedatives - making me extra hard to rouse, or mucking up silly little functions like, y'know, breathing and circulating blood.
I would feel most comfortable if it went like this :
- I get to talk to the person doing the procedure about the specific issues that they will have to bear in mind. I would like everyone who will be part of the procedure to be told this stuff.
- Beanie comes into the room with me so that I know someone is keeping an eye on my obs and joints for me - because it requires a degree of experience
Beanie thinks that this will put their backs up and that if something's happened her being there won't stop it. I honestly don't think I'm being overcautious. It is not difficult to do me major damage.
I think I will chat to them, and if they're ok then I'll let them go ahead, but if I'm not comfortable Beanie comes in or I don't have it. I'm open to other opinions though, especially if you've had one before.
1) One week's notice - assumes both that I and the person I will need with me to leave afterwards will not have something else planned *and* that as someone with a complex medical picture I won't have to clear / discuss this procedure with my other health care providers
2) The information leaflet was shockingly bad - not convinced I would've know what the procedure entails if I didn't already
3) The leaflet is very much trying to persuade me to have anaesthetic spray not sedation. I imagine (especially as it'll be a Friday afternoon) that I'll have to fight to be sedated - necessary because the spray wouldn't work on my EDSy throat and my oesophagus has horrible spasms which are likely to happen and I would rather be out of it
4) It won't find anything - I've been on omeprazole for over a year and I'm now on prokinetics. There is nothing in the information about stopping these meds, both of which are pretty effective, so anything they do see will be incidental to the actual problem. I don't know whether to stop them today - tried to phone to ask (normal guidance is to stop anywhere from 2 weeks to 3 months before) but couldn't get through. There are other problems that they might see (e.g. dysphagia, hiatus hernia) but might not record if that's not the reason for referral.
I'm not hugely scared about the procedure itself - yes, I'm more likely to have complications (e.g. perforation) due to my EDS but it's still not hugely likely - and if it does, a hospital with operating theatres and a gastro team is among the best places for it to.
I'm scared that someone will pull one of my joints out when I'm sedated (I'm especially concerned about my neck) and that my weird nervous system reacts oddly to medications, particularly sedatives - making me extra hard to rouse, or mucking up silly little functions like, y'know, breathing and circulating blood.
I would feel most comfortable if it went like this :
- I get to talk to the person doing the procedure about the specific issues that they will have to bear in mind. I would like everyone who will be part of the procedure to be told this stuff.
- Beanie comes into the room with me so that I know someone is keeping an eye on my obs and joints for me - because it requires a degree of experience
Beanie thinks that this will put their backs up and that if something's happened her being there won't stop it. I honestly don't think I'm being overcautious. It is not difficult to do me major damage.
I think I will chat to them, and if they're ok then I'll let them go ahead, but if I'm not comfortable Beanie comes in or I don't have it. I'm open to other opinions though, especially if you've had one before.
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