So we have been away. In a familiar place, but a different view from the kitchen window and even more crazy on-street parking. (but that is another tale!)
Lights have come into my line of sight for the last 20-odd years. My Dad always had migraines in the Spring, when he would drive to work with the rising sun facing him, the low blinding light would bring on headaches which would force a shortened day at work and an afternoon and evening in bed. My sister and I both took on this trait, my sister with regular migraines which last for days and myself with seizures and headaches. The medication I take for the epilepsy has helped a great deal but when I find a dark space with fluorescent tubes, low ceilings, "green" natural-light light bulbs or just far too many spotlights in a space with no natural light I can have a reaction pretty quickly. Yesterday I went into a Waterstones book shop. Pretty from the outside, and perfect for wanting to shelter from the rain. It was dark, low shop, in an old building which went a long way back and had a lot of ceiling lights. Most of the front window was taken up with displays and stickers so basically no natural light was getting in. I saw a few children's books and started to flick (through the books, not my hair!). I noticed the books, not the lights at first- I can't start being paranoid about every shop, judging whether I should or shouldn't go in, I would never go anywhere- never leave the house as the sun can give me migraines!
I only realised something was wrong when I felt a choking sensation. My stomach was retching, My head was beginning to spin.
'Now what?' I thought, 'was it the Qi energy massage I had in the morning' surely that was supposed to have the opposite effect!
'Am I too tired, have I over-done it again!'
'LIGHTS'
Get out, find some natural light.
I couldn't see OH, neither could I see anyone who might be able to help.
I moved towards the door and did some heavy breathing. You might be thinking, this can't be an epileptic, if it was, she would have gone down by now and would be convulsing on the floor. All this happened within about 5 seconds and I have the experience now (yucky though that experience has been) to treat the onset of gradual onset seizures differently. With the lights, it takes a while to hit me where it hurts and therefore I have a chance to stop it in it's tracks. My medication also has enough control to serve me well in times like these. After the Qi treatment I found a new inspiration- I had to rid my body of all the negative energy that had built up the the last few minutes. Standing by the door and facing the natural light, I started breathing in through my nose, and taking a long, slow, breath out of my mouth- this wasn't just a long, slow, breath, this was a long, slow, hurricane. I had also learned another Yoga breath the previous evening, which uses only the stomach muscles to control the breath and prevents hyperventilation. It was working. Within about two minutes I was able to speak again and told an assistant that I had epilepsy and needed my husband as I didn't feel well. He was with me in a couple of minutes. I was able to leave the shop, and connect with him by holding his hand, continue the breathing and walking (yes, walking!!!) back to the car.
Looking back, just ten minutes afterwards, I knew I could have collapsed on the floor and just let it happen, but it is the combination of everything I am doing that has helped me deal with this differently. No one was there to panic around me, to say "lie down, let me help you! OMG, what are you doing! I'll call an ambulance!" I had to deal with this myself. And it was the meditation, the yoga, the understanding of how the energy systems work in the body that pulled me through. I used to go into victim mode as I hadn't been given another option. And quite right too. My goodness it was scary and I wouldn't wish it on anyone. It has taken me over 20 years to deal with a seizure like this and from the reaction I was having, if I had decided to let it happen and just fallen on the floor, I could have ended up in a hospital as the seizures would have kept on coming, those lights are invasive and give anyone headaches. I'm just pleased I have found a new confidence from this experience, I'm sure there may well be another full seizure in my life, but I have learned enough now to make them as few and far between as possible!
Showing posts with label Epilepsy. Show all posts
Showing posts with label Epilepsy. Show all posts
Friday, 13 July 2012
Monday, 11 June 2012
Time Shift
Three Months ago...
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
Tuesday, 5 June 2012
So Many Options
Because most health authorities have very little proven treatments for ME, it is usually up to the patient to go it alone. With a little guidance from the GP or friends and the internet we delve into our pockets and go private!
So where do we go? Over the years various complementary therapies have appeared throughout the world as treatments for ME. Some are more well known, Mickel Therapy, The Lightning Process, to name but two. Most are clouded in mystery to prevent word getting out and losing money on actually providing the service. Where Adrenal Malfunction is sited as the reason for ME, there are Neuro-Linguistic Programme based courses, as well as Emotional Freedom Techniques. Some of these have larger success rates than others but it is difficult to give numbers- about 30-40% recover from just using these options, some actually regress, during the course or afterwards and some stay pretty much the same. With 60-70% chance of me handing over £600-£1200 with no real comeback and a large debt on my mind, I decided against these options a long time ago.
My journey away from the NHS, on the advice of my GP, began in 1993. I visited a complementary medicine practice, which ran studies whilst treating patients (The Centre For The Study Of Complementary Medicine). This is where my Candida was diagnosed and unfortunately we discovered that until this had abated I was not going to absorb many digestible(!) supplements no matter how many pills I downed (oh, yes I was rattling at one point!). A possible leaky gut also explained the toxins which seemed to be swimming around my body. (This physical stress could also have explained the increase in my Epileptic seizures at this time.) I was offered supplement drips of Vitamin C as an alternative, but as it took so much effort to get to the clinic and my seizures began increasing even more, this was cast aside.
Over this time I saw an NHS psychiatrist, as I did feel very alone in my struggles, but handled it well and certainly offloading everything once a month was not a bad thing.
A few years later I saw a private nutritionist. We cut out even more of the candida feeding foods- namely all dairy and raw vegetables (I still don't eat cheese)- I used Aloe Vera drink to heal my stomach lining and more probiotics, this time in doses never imagined before. This seemed to work and I have been improving in that way ever since- as you will know I am now eating occasional muffins (and had a piece of Jubilee victoria sponge!).
I have had so many options to choose from and having done so much reading about the recent research at Newcastle and Miami Universities, in particular, I decided a full-rounded approach was what I needed. So those that just tackle adrenal fatigue or digestive problems, for example, were not for me. At the end of last year I had gone 12 months with only 3 seizures, all of which could be put down to obvious abnormalities in my life, so I was finally getting good control of my Epilepsy. Just going on holiday, or having a stressful week would bring on a few seizures before, which would totally upset my ME recovery progress and other than sorting out the Candida our focus had been the Epilepsy for a few years. This gave us hope that we could start to tackle the ME again as a separate issue and really get to grips with it.
In January this year, after a Christmas holiday of research, my husband and I decided on starting by myself and slowly using more tools as I improved. I began meditation every day and also regular gentle yoga. I started using The Gupta Programme (link) in late March, when I had found a stable ground and was ready to start climbing again. This programme uses ideas similar to The Lightning Process, but gives a much bigger picture and most importantly recognises the physical limitations of this illness, also encouraging careful pacing and meditation. ME is a physiological condition and although The Gupta Programme works with the theory of the brain controlling the body, the understanding is that these are unconscious physical patterns, started and repeated, just as a baby starts and continues to breathe as it enters the world, from the limitations and physical symptoms of the illness and original virus or physical trauma.
I am now also working with The Optimum Health Clinic's 'Secrets To Recovery'(link). This offers advice on specific supplements to take and where to find them, also advocating meditation, yoga, EFT, it has a fully researched guide to pacing, and it has a whole host of recovery stories- ideal for a bit of motivation on those not-so-good days.
So, currently I am spending less money than I might have done and feel I have a fully-rounded approach to my recovery journey. It has been difficult finding and choosing my options, but I have re-started that journey and intend to continue.
A good guide to various complementary options is here at the Action For ME charity website.
So where do we go? Over the years various complementary therapies have appeared throughout the world as treatments for ME. Some are more well known, Mickel Therapy, The Lightning Process, to name but two. Most are clouded in mystery to prevent word getting out and losing money on actually providing the service. Where Adrenal Malfunction is sited as the reason for ME, there are Neuro-Linguistic Programme based courses, as well as Emotional Freedom Techniques. Some of these have larger success rates than others but it is difficult to give numbers- about 30-40% recover from just using these options, some actually regress, during the course or afterwards and some stay pretty much the same. With 60-70% chance of me handing over £600-£1200 with no real comeback and a large debt on my mind, I decided against these options a long time ago.
My journey away from the NHS, on the advice of my GP, began in 1993. I visited a complementary medicine practice, which ran studies whilst treating patients (The Centre For The Study Of Complementary Medicine). This is where my Candida was diagnosed and unfortunately we discovered that until this had abated I was not going to absorb many digestible(!) supplements no matter how many pills I downed (oh, yes I was rattling at one point!). A possible leaky gut also explained the toxins which seemed to be swimming around my body. (This physical stress could also have explained the increase in my Epileptic seizures at this time.) I was offered supplement drips of Vitamin C as an alternative, but as it took so much effort to get to the clinic and my seizures began increasing even more, this was cast aside.
Over this time I saw an NHS psychiatrist, as I did feel very alone in my struggles, but handled it well and certainly offloading everything once a month was not a bad thing.
A few years later I saw a private nutritionist. We cut out even more of the candida feeding foods- namely all dairy and raw vegetables (I still don't eat cheese)- I used Aloe Vera drink to heal my stomach lining and more probiotics, this time in doses never imagined before. This seemed to work and I have been improving in that way ever since- as you will know I am now eating occasional muffins (and had a piece of Jubilee victoria sponge!).
I have had so many options to choose from and having done so much reading about the recent research at Newcastle and Miami Universities, in particular, I decided a full-rounded approach was what I needed. So those that just tackle adrenal fatigue or digestive problems, for example, were not for me. At the end of last year I had gone 12 months with only 3 seizures, all of which could be put down to obvious abnormalities in my life, so I was finally getting good control of my Epilepsy. Just going on holiday, or having a stressful week would bring on a few seizures before, which would totally upset my ME recovery progress and other than sorting out the Candida our focus had been the Epilepsy for a few years. This gave us hope that we could start to tackle the ME again as a separate issue and really get to grips with it.
In January this year, after a Christmas holiday of research, my husband and I decided on starting by myself and slowly using more tools as I improved. I began meditation every day and also regular gentle yoga. I started using The Gupta Programme (link) in late March, when I had found a stable ground and was ready to start climbing again. This programme uses ideas similar to The Lightning Process, but gives a much bigger picture and most importantly recognises the physical limitations of this illness, also encouraging careful pacing and meditation. ME is a physiological condition and although The Gupta Programme works with the theory of the brain controlling the body, the understanding is that these are unconscious physical patterns, started and repeated, just as a baby starts and continues to breathe as it enters the world, from the limitations and physical symptoms of the illness and original virus or physical trauma.
I am now also working with The Optimum Health Clinic's 'Secrets To Recovery'(link). This offers advice on specific supplements to take and where to find them, also advocating meditation, yoga, EFT, it has a fully researched guide to pacing, and it has a whole host of recovery stories- ideal for a bit of motivation on those not-so-good days.
So, currently I am spending less money than I might have done and feel I have a fully-rounded approach to my recovery journey. It has been difficult finding and choosing my options, but I have re-started that journey and intend to continue.
A good guide to various complementary options is here at the Action For ME charity website.
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