I am still doing pretty well guys. These past few weeks have been different for sure (good different). I have had a few weeks here and there this past year when my vertigo has somewhat tamed which of course gave me hope. This time I feel within arms reach of normality. 7 years of absolute CONSTANT hell and here I am finally experiencing a big improvement.
I am not better but much improved for most of the day. The level of intense disorientation that I have lived with is incomparable to the dizziness I have currently. That being said I am not about to do a Michael Jackson spin any time soon but keeping things slow and just pottering around feels pretty good. I guess a normal person would jump in my head right now and wish to get out but I can accept this lower intensity of symptoms. I'll take it with open arms. Of course I wish for a full recovery and feeling the way I do recently makes me believe I can get there. If I do get there you might well catch me performing Michael Jackson spins and naked cartwheels around the garden in utter elation.
There have been a few hours here and there when I have forgotten that I am Mr Vertigo. Pottering around the house, taking a shower not even thinking about dizziness. Then suddenly I realise I have not given the dizziness/vertigo a second thought. This is huge progress. Normally the vertigo it is completely overwhelming and I cannot think of anything but. Taking a shower and drying myself off has been quite the task these past several years.
I am sure a bad day or weeks is on the horizon but I will suck it up and wait for more of the better days to come. I guess the task is to continue to have more better days than bad that would be a sign of progress for sure. Keep going guys.
Fingers and toes crossed.
Swimmyhead
Wednesday 30 July 2014
Thursday 24 July 2014
If you're going through hell, keep going
I still have minimal symptoms. The best I have felt in years. The visual external swaying and internal push pull sensations are slight. Balance is much stronger. If I turn too quick there is a jerking of the environment but at least it's not strong otherwise. It truly is like looking out at a whole new world. I really do not know how to explain how different I feel and how different I am able to move around. I don't feel like a bloody robot, stiff and having to turn slowly. Always concentrating hard on every step I take.
That constant heaviness/swaying pressure of the head and slow unfocused vision is not overwhelming. Sure there is still a head sensation present. It's like a slight headache and lightheaded but that is ok. I wish I could tell you guys the reason why I have suddenly improved but I just don't understand it. It could be a number of things. Maybe it's just time.
Now I need to be clear. I still have all the constant symptoms. I am not yet out of the woods and don't know if this will last (probably not given my track record) but I think it is important that I share this good news to help you guys who are also suffering the same fate.
You may have only just begun this hellish journey or been at it for quite some time. You spend your days scared and worried about the future, watching friends and family living life and moving on whilst your stuck primarily indoors in a disorientated hell. You psyche yourself up just to stand up and walk across a room or your garden.Watching television or reading a book is no longer comfortable. You might well be lying down right now concentrating hard to follow and read the words on the screen as they appear to snake and move all the while your head is spinning. It spins when you lie down so you dart straight back up again to get a sense of composure. It spins when your sitting upright. The fullness and heaviness in your head is overwhelming and the vision issues you have exacerbate everything else. You feel like there is no hope in sight. You feel lost, alone, afraid and a burden to everybody else around you. You may feel like a drama queen or a fraud and do not know who to turn to. It seems like nobody understands your predicament or can help.
Day after day, week after week ,month after month, year after year you battle to get through each day wishing and praying to feel well again. Hoping that tomorrow will give you back the life that this illness has taken away from you.
For a long time (years) symptoms may be very harsh with absolutely no change in how you feel. I tell you to keep pushing on, Allow yourself to have those sad moments/days and weeks even but then stand up and keep fighting. Do what you can do to get through each day. Only do what you feel you are able to do. Do not hurt yourself in order to live up to other peoples expectations. Arm yourself with knowledge about the various conditions and causes of vestibular dysfunction and seek professional treatment. If one specialist or doctor is not working for you then seek another. Get five professional opinions if need be. If you are told to complete a course in vestibular rehabilitation perform the exercises religiously. If you are given medication give them chance to work. Start to eat more healthy and keep yourself hydrated with water. What you put in your body is very important. Good food and hydration may help more than you think. If your doctor has no problem with you exercising then please do. I really believe that the daily exercise I started 2 years ago has helped me get these better moments ( I could be wrong of course).
Know that you are not a alone and that Swimmyhead and many others feel exactly like you do. Keep your fingers crossed for me guys and Ill leave you with my favourite inspirational quote that always pops into my mind in the bad times.
Read more at http://www.brainyquote.com/quotes/quotes/w/winstonchu103788.html#vPmdiPm89FAoMAYJ.99
Swimmyhead
That constant heaviness/swaying pressure of the head and slow unfocused vision is not overwhelming. Sure there is still a head sensation present. It's like a slight headache and lightheaded but that is ok. I wish I could tell you guys the reason why I have suddenly improved but I just don't understand it. It could be a number of things. Maybe it's just time.
Now I need to be clear. I still have all the constant symptoms. I am not yet out of the woods and don't know if this will last (probably not given my track record) but I think it is important that I share this good news to help you guys who are also suffering the same fate.
You may have only just begun this hellish journey or been at it for quite some time. You spend your days scared and worried about the future, watching friends and family living life and moving on whilst your stuck primarily indoors in a disorientated hell. You psyche yourself up just to stand up and walk across a room or your garden.Watching television or reading a book is no longer comfortable. You might well be lying down right now concentrating hard to follow and read the words on the screen as they appear to snake and move all the while your head is spinning. It spins when you lie down so you dart straight back up again to get a sense of composure. It spins when your sitting upright. The fullness and heaviness in your head is overwhelming and the vision issues you have exacerbate everything else. You feel like there is no hope in sight. You feel lost, alone, afraid and a burden to everybody else around you. You may feel like a drama queen or a fraud and do not know who to turn to. It seems like nobody understands your predicament or can help.
Day after day, week after week ,month after month, year after year you battle to get through each day wishing and praying to feel well again. Hoping that tomorrow will give you back the life that this illness has taken away from you.
For a long time (years) symptoms may be very harsh with absolutely no change in how you feel. I tell you to keep pushing on, Allow yourself to have those sad moments/days and weeks even but then stand up and keep fighting. Do what you can do to get through each day. Only do what you feel you are able to do. Do not hurt yourself in order to live up to other peoples expectations. Arm yourself with knowledge about the various conditions and causes of vestibular dysfunction and seek professional treatment. If one specialist or doctor is not working for you then seek another. Get five professional opinions if need be. If you are told to complete a course in vestibular rehabilitation perform the exercises religiously. If you are given medication give them chance to work. Start to eat more healthy and keep yourself hydrated with water. What you put in your body is very important. Good food and hydration may help more than you think. If your doctor has no problem with you exercising then please do. I really believe that the daily exercise I started 2 years ago has helped me get these better moments ( I could be wrong of course).
Know that you are not a alone and that Swimmyhead and many others feel exactly like you do. Keep your fingers crossed for me guys and Ill leave you with my favourite inspirational quote that always pops into my mind in the bad times.
"If you're going through hell, keep going"
Read more at http://www.brainyquote.com/quotes/quotes/w/winstonchu103788.html#vPmdiPm89FAoMAYJ.99
Swimmyhead
Sunday 20 July 2014
Still going strong
I'm still going strong. All symptoms are present but minimal regarding intensity. I had a more difficult day yesterday and thought that my luck may have ran out but today has been surprisingly good. Early morning I received a call from a friend asking if I would help him move some heavy garage equipment. I had a bit of concern as I am usually disorientated upon waking but said yes and got to work. Any level of disorientation I had lifted pretty rapidly and I was glad to be out helping and mingling with the world.
I expected a dip after such heavy lifting and much interaction but instead my symptoms have remained consistently manageable. So much so I went for a walk in the sun and enjoyed looking out at a very clear and steadier world.
I should say that symptoms do increase late evening. They always have and still do even on these better days. Once the light begins to dim unsteadiness and proproiception difficulties increase but not as drastically.
I do not know if this is the breakthrough week I have been yearning for and if it going to last. I am sure there will be worse days to come but if I could just have more of these better days that would be a blessing. I hope that my story is helping some of you long term sufferers out there. Try to keep positive even though you feel anything but. This is such a cruel illness because recovery is not linear. It's up and down, forwards and backwards. I have had some of my worst moments only this past Jan/Feb nearly 7 years in. It can be extremely disheartening when you have battled for so long thinking you are getting somewhere and then suddenly your back at square one. I cling on to hope and will continue to do so.
Swimmyhead
I expected a dip after such heavy lifting and much interaction but instead my symptoms have remained consistently manageable. So much so I went for a walk in the sun and enjoyed looking out at a very clear and steadier world.
I should say that symptoms do increase late evening. They always have and still do even on these better days. Once the light begins to dim unsteadiness and proproiception difficulties increase but not as drastically.
I do not know if this is the breakthrough week I have been yearning for and if it going to last. I am sure there will be worse days to come but if I could just have more of these better days that would be a blessing. I hope that my story is helping some of you long term sufferers out there. Try to keep positive even though you feel anything but. This is such a cruel illness because recovery is not linear. It's up and down, forwards and backwards. I have had some of my worst moments only this past Jan/Feb nearly 7 years in. It can be extremely disheartening when you have battled for so long thinking you are getting somewhere and then suddenly your back at square one. I cling on to hope and will continue to do so.
Swimmyhead
Friday 18 July 2014
NEARLY NORMAL
I am so thrilled at the moment because my vertigo has subsided a great deal. Dare I say that I almost feel NORMAL. I currently have a headache but that has not increased the imbalance and visual motion like it normally would. there is no rhyme or reason for it. I would describe the sensation today as simply lightheaded.
My vision is clear not fuzzy. The swaying sensation in my head that accompanies every head turn is minimal. Motion tracking with my eyes is pretty good as I am not feeling like I am falling when seeing someones hands move or when cars go by etc. I am pretty steady as the floor feels more solid and stable instead of lifting me up and down or sliding out from beneath me. I do not feel so detached. I could go on and on and on.
Of course I am waiting for hell to reappear as my very rare better moments never last but this is brilliant. I want to scream I FEEL NEARLY NORMAL but no one would understand and would obviously think the crazy dizzy person is even more crazy. These past days have given me a taste of near normal and in comparison to the persistent ever present vertigo that I have lived with every single waking second since May 2007 this is wonderful, there is no comparison.
I have had some bloody low and scary moments throughout this illness and for years I believed I had no chance of ever feeling like my old self and everybody else again. Well I can tell you that is not the case at the moment. I hope whoever is reading this and going through a long battle with any cause of vestibular dysfunction and who feels like there is never going to be a better day, I tell you there will be. It might be 2 weeks from now or 2 months or maybe 2 years, damn it might be several years like myself but it can happen.
I just pray that I continue to improve upon this more manageable level. I do not want to slide back to being a vertigo ridden zombie and battle through each day anymore. If only I could just continue to improve from this point. It seems possible after so long feeling impossible.
I pray that July 2014 is the month I finally begin to come to. I think I have done my fair share.
Health is like money, we never have a true idea of its value until we lose it. ~Josh Billings
http://www.quotegarden.com/health.html
Swimmyhead
My vision is clear not fuzzy. The swaying sensation in my head that accompanies every head turn is minimal. Motion tracking with my eyes is pretty good as I am not feeling like I am falling when seeing someones hands move or when cars go by etc. I am pretty steady as the floor feels more solid and stable instead of lifting me up and down or sliding out from beneath me. I do not feel so detached. I could go on and on and on.
Of course I am waiting for hell to reappear as my very rare better moments never last but this is brilliant. I want to scream I FEEL NEARLY NORMAL but no one would understand and would obviously think the crazy dizzy person is even more crazy. These past days have given me a taste of near normal and in comparison to the persistent ever present vertigo that I have lived with every single waking second since May 2007 this is wonderful, there is no comparison.
I have had some bloody low and scary moments throughout this illness and for years I believed I had no chance of ever feeling like my old self and everybody else again. Well I can tell you that is not the case at the moment. I hope whoever is reading this and going through a long battle with any cause of vestibular dysfunction and who feels like there is never going to be a better day, I tell you there will be. It might be 2 weeks from now or 2 months or maybe 2 years, damn it might be several years like myself but it can happen.
I just pray that I continue to improve upon this more manageable level. I do not want to slide back to being a vertigo ridden zombie and battle through each day anymore. If only I could just continue to improve from this point. It seems possible after so long feeling impossible.
I pray that July 2014 is the month I finally begin to come to. I think I have done my fair share.
Health is like money, we never have a true idea of its value until we lose it. ~Josh Billings
http://www.quotegarden.com/health.html
Swimmyhead
Wednesday 16 July 2014
Not Bad
It's been a pretty decent week I am glad to report. Symptoms have been much less severe most of the time. In fact my symptoms have been acting different. For the first 5 years symptoms were severe. In the last 2 years since taking medication my symptoms intensity have improved somewhat some of the time but will still tend to increase as the day goes by so that by evening I am good for nothing. However this week my symptoms are waxing and waning throughout the day. For a couple of hours I am much better then a little bit later the fuzzy vision and head pressure sets in and the motion intolerance begins only to improve yet again later in the evening or vice versa. I hope this is a permanent improvement and a positive sign. A sign that my brain,ears and eyes are finally trying to fight and talk to one another.
When my symptoms decrease to this more functional level I feel like normality is within arms reach. I would say I function at around 7 out of 10 as opposed to a 3-4 out of 10. There is now a huge difference between my bad days and better moments. Of course I have yet to control and stop the bad days/weeks from recurring and am under no illusion that maybe in an hour from now or two days from now I will be sucked back to a disorientated hell. Maybe this time I'll be wrong (I hope so).
Swimmyhead
When my symptoms decrease to this more functional level I feel like normality is within arms reach. I would say I function at around 7 out of 10 as opposed to a 3-4 out of 10. There is now a huge difference between my bad days and better moments. Of course I have yet to control and stop the bad days/weeks from recurring and am under no illusion that maybe in an hour from now or two days from now I will be sucked back to a disorientated hell. Maybe this time I'll be wrong (I hope so).
Swimmyhead
Thursday 3 July 2014
Invisible Disability
Is vestibular dysfunction a disability? I would have to say yes although I do know many people and a certain doctor who would scoff at the idea. Anyone living with a considerable long term vestibular deficit I am sure would agree with me. In fact I am sure many guys and girls who have experienced vertigo for a only week or two would also agree.
To be absolutely honest I am not comfortable describing my condition as disability. In fact I feel like a liar and a fraud if I ever mention the word. Most people including myself would consider broken limbs/missing limbs, blindness etc as being disability's which of course they are. They restrict a person from doing normal activity's and living everyday life with ease.
This is what my condition has done to me. It has impacted my life greatly and made simple tasks such as walking around my house, preparing food, going out or holding conversation pretty damn difficult and demanding. I am not exaggerating. I could go on and on about the numerous ways it effects my daily life. Quality of life is seriously effected if one is suffering from vestibular dysfunction.
We sufferers get no sympathy only sly smiles and remarks. I know you guys have felt the same way when trying to express how you feel to friends and family and even doctors. I for one have always felt stupid which of course I should not but I have no bandage on my head or missing limb(thank god) to show the true impact it has on me second to second.
I guess it all depends on the level of dysfunction one is suffering from to understand what I am saying. I have read about many people who can still live life and work through the dizziness and they would be first to admit that they are lucky they have not been hit harder like other people such as myself. I mean it's done a real number on me. The level of disorientation I have had to put up with especially the entire duration of the first five years was absolute hell. I am still not better and am still restricted as to what I can and cannot do on a daily basis.
Yes I can walk, yes I can turn a corner ,yes I can read or lift my leg up. I can now even workout from time to time but does this mean those tasks are easy and that life is easy for me? I know looking from the outside I look pretty damn capable but I tell you that we living with vestibular dysfunction find all of those simple tasks and many more very demanding.
Vestibular dysfunction is a cruel invisible disability that that not many take seriously. We go to bed at night rocking and swaying through the mattress and wake up to our daily tightrope walking act. It isn't fun and it is not easy living with a broken vestibular system. A system that is vital in making sense of our surroundings and spatial awareness. A system that controls our balance, makes sense of our visual and auditory inputs. A system that works hand in hand with our muscles and joints.
It is a disability but it is hopefully a disability that we long term sufferers will hopefully overcome. I try to see it as a temporary disability one I will eventually recover from.
Swimmyhead
To be absolutely honest I am not comfortable describing my condition as disability. In fact I feel like a liar and a fraud if I ever mention the word. Most people including myself would consider broken limbs/missing limbs, blindness etc as being disability's which of course they are. They restrict a person from doing normal activity's and living everyday life with ease.
This is what my condition has done to me. It has impacted my life greatly and made simple tasks such as walking around my house, preparing food, going out or holding conversation pretty damn difficult and demanding. I am not exaggerating. I could go on and on about the numerous ways it effects my daily life. Quality of life is seriously effected if one is suffering from vestibular dysfunction.
We sufferers get no sympathy only sly smiles and remarks. I know you guys have felt the same way when trying to express how you feel to friends and family and even doctors. I for one have always felt stupid which of course I should not but I have no bandage on my head or missing limb(thank god) to show the true impact it has on me second to second.
I guess it all depends on the level of dysfunction one is suffering from to understand what I am saying. I have read about many people who can still live life and work through the dizziness and they would be first to admit that they are lucky they have not been hit harder like other people such as myself. I mean it's done a real number on me. The level of disorientation I have had to put up with especially the entire duration of the first five years was absolute hell. I am still not better and am still restricted as to what I can and cannot do on a daily basis.
Yes I can walk, yes I can turn a corner ,yes I can read or lift my leg up. I can now even workout from time to time but does this mean those tasks are easy and that life is easy for me? I know looking from the outside I look pretty damn capable but I tell you that we living with vestibular dysfunction find all of those simple tasks and many more very demanding.
Vestibular dysfunction is a cruel invisible disability that that not many take seriously. We go to bed at night rocking and swaying through the mattress and wake up to our daily tightrope walking act. It isn't fun and it is not easy living with a broken vestibular system. A system that is vital in making sense of our surroundings and spatial awareness. A system that controls our balance, makes sense of our visual and auditory inputs. A system that works hand in hand with our muscles and joints.
It is a disability but it is hopefully a disability that we long term sufferers will hopefully overcome. I try to see it as a temporary disability one I will eventually recover from.
Swimmyhead
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