So, the operation day came, I was surprisingly calm about it. I think I had done all the worrying in the lead up to the day. The medical staff were absolutely fantastic, made it feel so routine, answered any questions I had. Mr Irving was very relaxed, which made me relaxed too. I had been nervous about a general anaesthetic, but there really is nothing to it, you go to sleep, and you wake up, having lost a few hours in the meantime.
As I came around from the anaesthetic I started to laugh, whether that was relief or just the fact that I thought it was all very funny, I'm not sure, but it seemed to amuse the recovery team! I discovered that those that were in the operating room were learning a lot about SCDS too, and were asking questions as I continued to come around. The overwhelming sensation though afterwards was the split in my head. Prior to surgery the internal noises had been all encompassing, now I had one side that relatively quiet, and the other side that was screaming! My right side (unoperated side) was incredibly noisy, but this did subside over the course of a week or so. My left side was wonderfully quiet (apart from some run of the mill tinnitus, which did seem quite intrusive at times)
After a night on the ward, I was discharged home. My balance had taken a real knock. Needing to walk with two people holding me on the evening of my op, one person and my stick on the day after, and then once I was home (and everything was that bit closer) I could manage with just my stick for a few days. So my balance slowly improved, I am now at a point where I feel pretty comfortable in the environment of my own home, going out can have some challenges, but as long as I am sensible, I can cope. My hearing in my left ear has started to come back. I had some fantastic nights sleep after the operation, as I had to sleep on my good ear, which meant no external noises could disturb me!
As my hearing came back, it sounded so very distorted for a while, varying from it sounding like a babbling brook in my head, to some robots trying to talk. But that has all passed now, I am beginning to hear discernible speech again. Although trying to judge wear sound is coming from is frustratingly slow at coming back.
I was surprised at how little pain I was in. There was a little discomfort at times, but nothing that paracetamol or nurofen couldn't sort out. I had to adapt my glasses, so that the arm didn't irritate the scar. So we took the arm off, and then weighted it with blue tac, so that the glasses would still sit relatively straight on my face.
So that is where I am at now. I have another few weeks before I go back to see the surgeon at the balance clinic. I am aware that my right ear is still very symptomatic, so hopefully we can get a plan together for sorting that one out in the near future.
Friday 30 September 2016
Tuesday 30 August 2016
The start of the rest of my life
So, I went through the tests, I got the go ahead for surgery, and then I had the wait.
The wait, to start with, was just a case of getting on with life as well as I could. Knowing that in a few months I would be getting my left side fixed. But as the date gets closer, it plays on your mind so much more. I am now two days away from surgery, my mind has been in overdrive, so I have been keeping as busy as I can to distract myself!!
One of the recurring worries is, how well I will be able to recover from this, in the knowledge that I will need the other side fixing too before I will be truly "fixed". One thing that has really helped me is watching the Olympics. I know, a weird connection, but all of those athletes have had to work so hard, push though so many set backs, or pain, yet they did it, and achieved their goal of competing in the prestigious games. So I am going to see this in the same context. It is going to be hard work, but without putting in that hard work, tackling the challenges, retraining my brain, I am not going to get to my goal.
So, surgery, what does it entail? The surgeon, Mr Irving, is one of the top SCDS surgeons in the country. He will be drilling through the mastoid bone behind my ear, and using some of the bone chippings to create a plug for the superior semi circular canal. The idea is that thiswill render the canal inactive, and therefore stop the symptoms. The posterior semicircular canal on the other side of my head is in the same plane as the superior semicircular canal on the operated side, so will take over the function of the inactive canal.
As I am bilateral, there is a chance that this will make me feel worse until the second side is done, but then there is a chance that it won't, and that I will feel more stable and less noisy. The not knowing how I will be is difficult to contend with. When you undergo any operation you expect there to be a period of recouperation, but not knowing how long that will be is playing on my mind a bit. But the wait is nearly over, soon I will know, soon I will start the journey to a more stable, less noisy head, and I will be able to start to reclaim my life.
The wait, to start with, was just a case of getting on with life as well as I could. Knowing that in a few months I would be getting my left side fixed. But as the date gets closer, it plays on your mind so much more. I am now two days away from surgery, my mind has been in overdrive, so I have been keeping as busy as I can to distract myself!!
One of the recurring worries is, how well I will be able to recover from this, in the knowledge that I will need the other side fixing too before I will be truly "fixed". One thing that has really helped me is watching the Olympics. I know, a weird connection, but all of those athletes have had to work so hard, push though so many set backs, or pain, yet they did it, and achieved their goal of competing in the prestigious games. So I am going to see this in the same context. It is going to be hard work, but without putting in that hard work, tackling the challenges, retraining my brain, I am not going to get to my goal.
So, surgery, what does it entail? The surgeon, Mr Irving, is one of the top SCDS surgeons in the country. He will be drilling through the mastoid bone behind my ear, and using some of the bone chippings to create a plug for the superior semi circular canal. The idea is that thiswill render the canal inactive, and therefore stop the symptoms. The posterior semicircular canal on the other side of my head is in the same plane as the superior semicircular canal on the operated side, so will take over the function of the inactive canal.
As I am bilateral, there is a chance that this will make me feel worse until the second side is done, but then there is a chance that it won't, and that I will feel more stable and less noisy. The not knowing how I will be is difficult to contend with. When you undergo any operation you expect there to be a period of recouperation, but not knowing how long that will be is playing on my mind a bit. But the wait is nearly over, soon I will know, soon I will start the journey to a more stable, less noisy head, and I will be able to start to reclaim my life.
Wednesday 20 January 2016
Waiting and a balancing act.
If there is one thing that I have learned how to do over the last year of feeling dizzy, it is to learn how to wait. It is so very, very frustrating, knowing that there is something wrong, and firstly not knowing what it is, and having to wait to find out, then waiting for further tests, further appointments and further referrals. I suppose one blessing to be taken from all this waiting, is that it obviously isn't a life threatening condition, because then things move alarmingly quickly.
There are drawbacks to this waiting, and it is how to address those, that I want to touch on today.
First of all, there is the intense frustration that your life is being put on hold, whilst you wait for the process of tests, diagnosis, treatment to be gone through. Of course, to you, and those whose lives are also impacted by this condition you have, your life, and the ability to live it to the fullest has the utmost importance. Plans have to be cancelled, or at least postponed. Life has to adapt to the limited abilities of the patient, all whilst trying to keep a positive outlook on life, which on the bad days, is tough. But learning to live within the confines of the condition to the best of your abilities is key to this.
The adaptations I have had to make to my life are many. From stopping driving, to walking with a stick. Having to avoid noisy environments (and boy, is the world noisy when you are sensitive to it!), and when that isn't possible to wear my DUBS earplugs. Being careful not to raise my heartbeat for fear of making me dizzy, and that can happen through exercise but also through emotions. Getting upset can make my symptoms go through the roof.
When you are aware that going out, experiencing noise can make you dizzy, it is easy to become stressed about it, and that raises your heartbeat, and therefore makes it even more of a self fulfilling prophecy. It would be easy to just stay at home, in the quiet, and remain fairly ok. But that is most definitely a way of putting your life on hold, becoming resentful of the condition, and a path to isolation and depression. Yet on the flipside, going out is exhausting. You realise how bad you are when you go out into the normal world, and can't walk straight, or have to stop because everything is moving about so much you can't focus. So, I do still go out, I walk the dog, even when it is the last thing I feel like doing. I go out to restaurants, and take my earplugs with me. I go out to events that I feel I can cope with, even if I do have moments where people could quite easily mistake me for being drunk, as I struggle to stay on my feet. Because that is what life is about, it is not about hiding away (although I need to that from time to time), it is about doing as much as you can, within the constraints that are given to us.
Another balancing act I am contending with at the moment, is that of weight. Given that raising my heartbeat makes me dizzy, I have consequently become less active, and the weight has started to pile on. To the point of me being heavier than I was when I was 9months pregnant with my largest baby! To be fair, it is not all down to the SCDS that has caused the weight gain, but it is certainly making it very difficult to shift it. So I have enlisted the help of a fitbit. Which allows me to assess how many calories my pretty inactive body needs. I can see this being a great help. I feel in control of something at long last, and despite whatever other struggles my body is contending with, I can now start to make it the best version of itself right now.
It is this idea of being the best version of yourself that I find is a good motivator. Yes, I may have been fitter, thinner, more stable, more independent a few years ago, and yes, I may well be like that again in the future. But for now, I am going to make myself the healthiest I can be, within the constraints, healthy in body and mind.
There are drawbacks to this waiting, and it is how to address those, that I want to touch on today.
First of all, there is the intense frustration that your life is being put on hold, whilst you wait for the process of tests, diagnosis, treatment to be gone through. Of course, to you, and those whose lives are also impacted by this condition you have, your life, and the ability to live it to the fullest has the utmost importance. Plans have to be cancelled, or at least postponed. Life has to adapt to the limited abilities of the patient, all whilst trying to keep a positive outlook on life, which on the bad days, is tough. But learning to live within the confines of the condition to the best of your abilities is key to this.
The adaptations I have had to make to my life are many. From stopping driving, to walking with a stick. Having to avoid noisy environments (and boy, is the world noisy when you are sensitive to it!), and when that isn't possible to wear my DUBS earplugs. Being careful not to raise my heartbeat for fear of making me dizzy, and that can happen through exercise but also through emotions. Getting upset can make my symptoms go through the roof.
When you are aware that going out, experiencing noise can make you dizzy, it is easy to become stressed about it, and that raises your heartbeat, and therefore makes it even more of a self fulfilling prophecy. It would be easy to just stay at home, in the quiet, and remain fairly ok. But that is most definitely a way of putting your life on hold, becoming resentful of the condition, and a path to isolation and depression. Yet on the flipside, going out is exhausting. You realise how bad you are when you go out into the normal world, and can't walk straight, or have to stop because everything is moving about so much you can't focus. So, I do still go out, I walk the dog, even when it is the last thing I feel like doing. I go out to restaurants, and take my earplugs with me. I go out to events that I feel I can cope with, even if I do have moments where people could quite easily mistake me for being drunk, as I struggle to stay on my feet. Because that is what life is about, it is not about hiding away (although I need to that from time to time), it is about doing as much as you can, within the constraints that are given to us.
Another balancing act I am contending with at the moment, is that of weight. Given that raising my heartbeat makes me dizzy, I have consequently become less active, and the weight has started to pile on. To the point of me being heavier than I was when I was 9months pregnant with my largest baby! To be fair, it is not all down to the SCDS that has caused the weight gain, but it is certainly making it very difficult to shift it. So I have enlisted the help of a fitbit. Which allows me to assess how many calories my pretty inactive body needs. I can see this being a great help. I feel in control of something at long last, and despite whatever other struggles my body is contending with, I can now start to make it the best version of itself right now.
It is this idea of being the best version of yourself that I find is a good motivator. Yes, I may have been fitter, thinner, more stable, more independent a few years ago, and yes, I may well be like that again in the future. But for now, I am going to make myself the healthiest I can be, within the constraints, healthy in body and mind.
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