This sounds intriguing. And it is. One of the first innovations into ME research that I learned about when I crashed again two years ago. Much research and discovery had happened since my last crash. Even just ten years previously when I had crashed seriously before we could find no help which would give an ounce of positivity towards recovery. A bad time I had experienced between 2006 and 2008 appeared to be so focused on moving house, coping with changes in the family situation that we put it all down to stress and poor control of the Epilepsy- in hindsight it was so definitely part of the ME spiral I feel a fool to have not searched for related support then.
So the Tilt Test is something that has been established at Newcastle University. The idea is to monitor severely affected ME patients- those who are bed bound, possibly with support through intravenous drip and stomach feeding tubes. These patients will be put on a bed, which is tilted daily. Only by increasing the time and angle of the tilt over weeks and months will the body slowly be able to sit upright and eventually stand. The dysfunction of the autonomic nervous system- a physical dysfunction- causes such problems that the essence of this test, slow and monitored pacing, is essential. For patients who have been in these situations for years at a time and whose family are round-the-clock carers this is a revelation. Nutrient intake is carefully monitored as is body temperature and blood pressure and every other possible monitoring test you can imagine. As soon as the body shows signs of stress, the tilt is reversed and clues are noted so the next daily tilt can be finished before stress arises.
How did this help me? At this time I was dizzy from standing and needed head and neck support while sitting. I recognised the tilt concept in myself. If I walked anywhere I would hold onto someone's arm, or use furniture, door frames and walls around the house as an extra support (using a walking stick or frame put pressure on my arms and wrists which just did not have the strength to keep me upright)
By discovering this and realising that the researchers around the world were discovering more and more about the physical reasons behind the illness I found hope and began to believe in recovery. I also found reasons for my illness and began to understand the symptoms which had just happened and confused me for so long. I didn't feel so often that I was flailing in the dark and grabbing at anything that came within reach.
I began to stand up by the bed everyday. I tried to walk through the house without holding onto things- this didn't work, I had too much belief! So I was starting to stand, but that was about it. What I was encouraged to do was investigate further. I found ME Research and discovered how much they had contributed to the world of modern ME treatment. I also found books to read (some of which were still down in the doldrums and insisted I would be ill forever!) and discovered the Optimum Health Clinic and learnt a lot from their FreedomfromME YouTube videos. Freedom from ME is a possibility and I encourage anyone who is connected in any way with this illness to start searching. It took me 18 months from finding Professor Newton in Newcastle University (as energy levels and brain fog dictated my research!) but I found more and more, better and better solutions. The sooner the research starts, the sooner some kind of relief will be felt.
Showing posts with label dizziness. Show all posts
Showing posts with label dizziness. Show all posts
Friday, 20 July 2012
Friday, 15 June 2012
Audio Books
I mentioned yesterday about listening to Harry Potter and The Chamber of Secrets. Audio books have kept me going for years. Sometimes they are live, sitting on my sofa- my Dad used to read to me every lunchtime. We would watch Working Lunch together- oh yes I had sorted my self out with a pension from the age of 25 thanks to the gurus on there- while eating our lunch and then he would sit and read to me. We went through Treasure Island, 39 Steps, Robinson Crusoe, lots of classics. Also the Harry Potter books when they first appeared (my husband continued with that tradition when the final few were published).
The difficulties, of reading to myself, were varied over the years. Focusing on the page was sometimes difficult. Dizziness would result in me trying to read with one eye open and one eye closed. Nausea would also set in quite quickly after 15-20 minutes. The biggest problems, which are also occurrent now are the lack of short and long term memory, and poor concentration. I can read 3 pages and realise that I have taken in only one paragraph, constantly turning back pages and getting nowhere fast isn't particularly helpful. The tiredness can cause such bad concentration that I might need to give up for a couple of weeks- by which time I have forgotten what I have read so far! My cognitive ability is improving but I still have to see what happens, some days are better than others and non-fiction is easier to read as are books of letters or short chapters and children's books
My husband reads to me now most nights before we turn out the light. It is a great way for me to keep in touch with literature and remember some of my favourites. With such a poor memory I can enjoy the same book a couple of years apart and it will seem completely new to me. We switch between drama and comedy, sci-fi and classic, also reading a lot of children's books for a gentle interlude occasionally, we have gone through the whole Narnia series and also Anne of Green Gables. Every Christmas we come back to a seasonal tale- last year it was 101 Dalmatians, the year before The Box of Delights and before that Harry Potter, preceded by Narnia. (I can remember that but very little of the contents of the books!)
Listening to reading also came in CD and cassette form. Mum would look out for free ones on the newspaper and I bought a few magazines when a series came out of Classic stories. My favourites became Tess Of The D'Urbervilles, Rebecca and Jane Eyre. The incidental music and the tone of the voices became a familiar comfort after a while and if I heard nothing else the background sound of it would lull me to sleep on difficult nights.
I'm listening to Radio 4 Extra a lot, which has book readings and dramatisations- usefully in 15 minute chunks and also available for 7 days on the internet radio via iPlayer. I have also found a couple of websites which have unabridged downloadable readings of books which are in the public domain. Most recently I have found The Secret Garden by Frances Hodgson Burnett. A childhood favourite, I was over the moon to have a new voice read it to me like Jackanory all over again! These times are more for comfort and familiarity than study or great significance. Books just give me something to look forward to, to see the time pass, another daily foothold which has nothing absolutely to do with me being ill.
The difficulties, of reading to myself, were varied over the years. Focusing on the page was sometimes difficult. Dizziness would result in me trying to read with one eye open and one eye closed. Nausea would also set in quite quickly after 15-20 minutes. The biggest problems, which are also occurrent now are the lack of short and long term memory, and poor concentration. I can read 3 pages and realise that I have taken in only one paragraph, constantly turning back pages and getting nowhere fast isn't particularly helpful. The tiredness can cause such bad concentration that I might need to give up for a couple of weeks- by which time I have forgotten what I have read so far! My cognitive ability is improving but I still have to see what happens, some days are better than others and non-fiction is easier to read as are books of letters or short chapters and children's books
My husband reads to me now most nights before we turn out the light. It is a great way for me to keep in touch with literature and remember some of my favourites. With such a poor memory I can enjoy the same book a couple of years apart and it will seem completely new to me. We switch between drama and comedy, sci-fi and classic, also reading a lot of children's books for a gentle interlude occasionally, we have gone through the whole Narnia series and also Anne of Green Gables. Every Christmas we come back to a seasonal tale- last year it was 101 Dalmatians, the year before The Box of Delights and before that Harry Potter, preceded by Narnia. (I can remember that but very little of the contents of the books!)
Listening to reading also came in CD and cassette form. Mum would look out for free ones on the newspaper and I bought a few magazines when a series came out of Classic stories. My favourites became Tess Of The D'Urbervilles, Rebecca and Jane Eyre. The incidental music and the tone of the voices became a familiar comfort after a while and if I heard nothing else the background sound of it would lull me to sleep on difficult nights.
I'm listening to Radio 4 Extra a lot, which has book readings and dramatisations- usefully in 15 minute chunks and also available for 7 days on the internet radio via iPlayer. I have also found a couple of websites which have unabridged downloadable readings of books which are in the public domain. Most recently I have found The Secret Garden by Frances Hodgson Burnett. A childhood favourite, I was over the moon to have a new voice read it to me like Jackanory all over again! These times are more for comfort and familiarity than study or great significance. Books just give me something to look forward to, to see the time pass, another daily foothold which has nothing absolutely to do with me being ill.
Saturday, 12 May 2012
Where have I been?
My illness began in 1987. I was twelve years old and the school term had started in the September. On a scary Monday morning I woke up, I wasn't the same person. Mum came in to my room as I wasn't preparing myself for school; so unusual, I was keen and lively on a Monday morning. By eight o'clock I would have been playing the piano for 20 minutes before breakfast.
Two weeks later our doctor had seen me twice and had taken various blood samples. A virus was diagnosed, similar to meningitis. I was prepared again for school, but not quite the same person. I became lethargic, but battled on through and it was thought I would 'get over it'
In January, on the first day of the school term I was again exhausted. I woke up in a state of dizziness, blinding pain in my left ear. Another infection, more antibiotics. Another two weeks away from school turned into three months and a fungal infection deep in the inner ear. By this time something else had happened. I was in bed, curtains closed, shocked by quiet, loud noises. My enthusiastic nature had become an exhausted, lethargic, helpless nature; I was irritable, I couldn't concentrate. I knew I was ill, I just couldn't do anything about it.
A paediatric consultant decided I was afraid of school, was being bullied and should go back immediately. Our GP supported us, having already diagnosed my ME, and suggested a gentle approach to help integrate me back into a more normal life. Through the Easter holidays I was getting dressed every day and started back in the summer term. Two mornings a week at school became three, became every other day and before I knew it I was back for full weeks. A day at school needed lifts in cars there and back. The bed would be waiting for me when I returned at four o'clock and I did start integrating back into normal, what was by then, teenage life. Or did I?
I remember weekends in bed, not doing PE because I was 'tired', watching my brother and sister go on a bike ride and me having a quiet afternoon with my Mum. It wasn't the same, I wasn't well. My parents were great, just let me integrate into family life, didn't make a big deal about it. If I needed a quiet day, I had a quiet day, I had numerous afternoons on the sofa watching films, with the volume, brightness and contrast turned down to almost nil! I would fall asleep and no one would bat an eyelid. I wasn't made to feel odd or different, I was me.
Two years later, 1990, it was October half-term, the Sunday before school began towards the run-up to Christmas. I was playing a board game with my Dad and brother. I had my first seizure. Everything went downhill from there. It was the last year of school, mock exams were looming in the following spring and final exams were in the summer. I was a wreck. Everything scared me. I had another reason to miss PE, or have a day off school. My peers didn't understand, they weren't supportive and that just made it all the more difficult and confusing to cope with. There was just one friend who I saw every Monday afternoon, when we were put in the office of the Home Ec. Rooms to 'do our homework' (we would sit and chat for 2 hours!). She was ill too and we had a connection. While everyone else was doing PE we were sharing our woes and found an empathy for each other's situations.
Three years down the line I had attempted college and A-Levels three times. The regime was too much and I realised it early on, I just seemed to think that the only way in life was to do as they all do. Within a couple of months of each start of year I was in bed 24/7, having regular seizures and recovering from...overdoing it. How I hate that term now. "Overdoing it" might seem like a trivial pairing of words. But to me it is a disappointment, a failure, an absolute, epitome of deficiency and inadequacy. Overdoing it gave me bad things. Days in bed, confusions, seizures, humiliation, embarrassment. In those times I relied on others; by believing I could cope for myself, I just showed myself three days later that I couldn't.
In those years I spent months in bed, years without walking more than a few paces indoors or round the garden, I lost three stone in about 6 months at one point. Recovery was always my goal and with my family's support I reached it over time, but only ever so far.
The wheelchair has come in and out of my life twice and I now have it for a third time. I thought it was in my past but yet again two years ago I was guilty of 'overdoing it'. I thought I was becoming a healthy person, a 'normal' just like everyone else, person. Hindsight gives many things. I am sure anyone with ME or CFS will recognise these ideas. Putting those years behind me has been a regular thing through my life. Everyday has been the next step on the path to recovery. I think I may have finally found it. The one catalyst for this has been finally getting a foothold in the door of my seizures. For the first time I can see that by working together with my various doctors a combination of medication has been found which gives me control. I don't have the unenviable task of waking up in the morning and discovering a blinding headache, aching limbs, aching muscles which I'd totally forgotten existed and a memory wiped of the previous evening. This was frequent in the past, totally unpredictably a few times every month, two, three or four times a night I would exercise all my muscles without my knowledge! According to my husband I would also turn blue and decide to hold my breath for 2 or 3 minutes! Now that my seizures are much less frequent flyers I have the starting point. I found that point about 6 months ago. I was trying to keep up to date with friends, I was trying to be a dutiful family member and realised that my idea of putting it all behind me and continually climbing the ladder of health again was not an option. I had to find that bottom rung and sit down for a while, to give myself the stability to start climbing. I had done it in the past, the difference now was that it was my choice and I wasn't being pushed by my carers, my doctors or my seizures; I wasn't doing it with heartache and a feeling of failure. I decided to step back, sit on the floor and wait for calm to find me; I wasn't going to let the illness push me over to the floor. So I did it and I think I'm climbing again... I know I'm climbing again.
Two weeks later our doctor had seen me twice and had taken various blood samples. A virus was diagnosed, similar to meningitis. I was prepared again for school, but not quite the same person. I became lethargic, but battled on through and it was thought I would 'get over it'
In January, on the first day of the school term I was again exhausted. I woke up in a state of dizziness, blinding pain in my left ear. Another infection, more antibiotics. Another two weeks away from school turned into three months and a fungal infection deep in the inner ear. By this time something else had happened. I was in bed, curtains closed, shocked by quiet, loud noises. My enthusiastic nature had become an exhausted, lethargic, helpless nature; I was irritable, I couldn't concentrate. I knew I was ill, I just couldn't do anything about it.
A paediatric consultant decided I was afraid of school, was being bullied and should go back immediately. Our GP supported us, having already diagnosed my ME, and suggested a gentle approach to help integrate me back into a more normal life. Through the Easter holidays I was getting dressed every day and started back in the summer term. Two mornings a week at school became three, became every other day and before I knew it I was back for full weeks. A day at school needed lifts in cars there and back. The bed would be waiting for me when I returned at four o'clock and I did start integrating back into normal, what was by then, teenage life. Or did I?
I remember weekends in bed, not doing PE because I was 'tired', watching my brother and sister go on a bike ride and me having a quiet afternoon with my Mum. It wasn't the same, I wasn't well. My parents were great, just let me integrate into family life, didn't make a big deal about it. If I needed a quiet day, I had a quiet day, I had numerous afternoons on the sofa watching films, with the volume, brightness and contrast turned down to almost nil! I would fall asleep and no one would bat an eyelid. I wasn't made to feel odd or different, I was me.
Two years later, 1990, it was October half-term, the Sunday before school began towards the run-up to Christmas. I was playing a board game with my Dad and brother. I had my first seizure. Everything went downhill from there. It was the last year of school, mock exams were looming in the following spring and final exams were in the summer. I was a wreck. Everything scared me. I had another reason to miss PE, or have a day off school. My peers didn't understand, they weren't supportive and that just made it all the more difficult and confusing to cope with. There was just one friend who I saw every Monday afternoon, when we were put in the office of the Home Ec. Rooms to 'do our homework' (we would sit and chat for 2 hours!). She was ill too and we had a connection. While everyone else was doing PE we were sharing our woes and found an empathy for each other's situations.
Three years down the line I had attempted college and A-Levels three times. The regime was too much and I realised it early on, I just seemed to think that the only way in life was to do as they all do. Within a couple of months of each start of year I was in bed 24/7, having regular seizures and recovering from...overdoing it. How I hate that term now. "Overdoing it" might seem like a trivial pairing of words. But to me it is a disappointment, a failure, an absolute, epitome of deficiency and inadequacy. Overdoing it gave me bad things. Days in bed, confusions, seizures, humiliation, embarrassment. In those times I relied on others; by believing I could cope for myself, I just showed myself three days later that I couldn't.
In those years I spent months in bed, years without walking more than a few paces indoors or round the garden, I lost three stone in about 6 months at one point. Recovery was always my goal and with my family's support I reached it over time, but only ever so far.
The wheelchair has come in and out of my life twice and I now have it for a third time. I thought it was in my past but yet again two years ago I was guilty of 'overdoing it'. I thought I was becoming a healthy person, a 'normal' just like everyone else, person. Hindsight gives many things. I am sure anyone with ME or CFS will recognise these ideas. Putting those years behind me has been a regular thing through my life. Everyday has been the next step on the path to recovery. I think I may have finally found it. The one catalyst for this has been finally getting a foothold in the door of my seizures. For the first time I can see that by working together with my various doctors a combination of medication has been found which gives me control. I don't have the unenviable task of waking up in the morning and discovering a blinding headache, aching limbs, aching muscles which I'd totally forgotten existed and a memory wiped of the previous evening. This was frequent in the past, totally unpredictably a few times every month, two, three or four times a night I would exercise all my muscles without my knowledge! According to my husband I would also turn blue and decide to hold my breath for 2 or 3 minutes! Now that my seizures are much less frequent flyers I have the starting point. I found that point about 6 months ago. I was trying to keep up to date with friends, I was trying to be a dutiful family member and realised that my idea of putting it all behind me and continually climbing the ladder of health again was not an option. I had to find that bottom rung and sit down for a while, to give myself the stability to start climbing. I had done it in the past, the difference now was that it was my choice and I wasn't being pushed by my carers, my doctors or my seizures; I wasn't doing it with heartache and a feeling of failure. I decided to step back, sit on the floor and wait for calm to find me; I wasn't going to let the illness push me over to the floor. So I did it and I think I'm climbing again... I know I'm climbing again.
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