(a friend of mine, who also has ME and is following a similar path as I am to recovery, has asked me to write more about pacing and how important the breath is during exercise of any kind)...
What energy reserves?
We just don't have them. The initial crash and subsequent time of rest and recuperation needed has taken a lot from us. The dysfunction of the autonomic nervous system results in a reduced ability to utilise the nutrients that we may eat and take in from the world around us. Leaving not just de-conditioned muscles but damaged cells and muscular tissue. The bone in a broken leg will heal in about 6 weeks, but so much of the muscle will need rebuilding over time, breaking in and creating new muscle cells to improve fitness. The unlikely thing about a broken leg is the loss of much fitness throughout the rest of the body. A little energy might be lost in the lungs and heart, but this is unlikely to be a dramatic loss. You can still pump iron with a broken leg, your torso can still lift weights, type, chop vegetables.
In ME patients energy is used every day, of course, we are still breathing and our hearts are still beating, cells are regenerating. The difference is that our bodies are damaged and have lost reserves, the cells are using energy from every breath we take. Oxygen comes into our bodies and is used straight away. The lungs must be healthy enough to take in what we need, the heart has to be strong enough to pump the oxygen around the body and the blood has to be healthy enough to provide the muscles with sufficient oxygen. The body doesn't have many untapped resources which will give us a little extra if we want to try a little more out of the blue, or three days in a row. (one day a short walk may be fine, but the reserves might have been used and will need to restock!)
The bodies of a long distance runner have been exercised and trained so well that they can utilise the oxygen that they are breathing for much longer, they also have vast quantities of energy reserves which are utilised during exertion and refuelled in between and during races. (the energy drinks that are now especially tailored for their needs). When they hit the wall, it isn't like us within seconds or minutes, it is after running for hours.
As ME patients our lungs need rehabilitation and retraining to take in oxygen efficiently, they can only give you so much! Even by breathing calmly and enjoying what you do, with a gentle, willing, happy state of mind, the reserves, lung capacity and even heart muscle isn't there to support what you may want to do.
Reserves have to be built up, rest is needed to encourage healing in the cells after exercise of all kinds; lifting clothes into the washing machine, a short walk over the road to feed the cat when the neighbours are on holiday.
Oxygen is providing our energy, giving the body the energy it needs and letting the reserves build up slowly and gently. As the muscles build and cells are healed with this energy, aerobic breath can move onto anaerobic breath- breath which is not giving enough oxygen to complete the task.
While you are still recovering you will notice that anaerobic breath has been used, maybe through as simple a task as a short brisk walk in cool fresh morning air. Walk more slowly and give your breath enough chance to energise the body, but also environment can be so key; cool air will exhaust the body quicker as the energy is used heating the lungs and won't get much further! Air from a higher altitude, will have less oxygen anyway. For all these reasons the chest can ache, but also nausea, headaches and lightheadedness may result, with muscle pain afterwards indicating that reserves were being tapped, which just weren't there! Rest will help this and everyone will be learning their limits week by week.
As time passes and tasks become easier, energy reserves will build and the need for aerobic breath can be discarded sometimes.
I'm learning to give myself a break, the research in this field is fascinating- not just for ME sufferers but those who are in rehabilitation of all kinds- and it has helped me understand my body much better.
Give yourself a break too, take things slowly, exercise with gentle movements and with lots of rest breaks; find the optimum environment for stretching the body- not too hot, not too cold. Don't go mad and stress the breath with anxiety so the lungs don't have a chance! Just take it easy and be aware. Make your carers aware of this, different days bring different energy amounts, the smallest thing can result in needing more or less help as the days go by- be aware of this too, your body is recovering and it needs love, comfort and a gentle guiding hand.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Saturday, 21 July 2012
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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