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.
Showing posts with label patience. Show all posts
Showing posts with label patience. Show all posts
Monday, 11 June 2012
Saturday, 9 June 2012
Shopping
I love the internet for this reason if nothing else!
I can and do shop for everything on-line. From shoelaces to spaghetti, from lightbulbs to lawnmowers. The funny thing is that when I search and search for something, which I think I should easily pounce on in the local shops, I end up going straight to Google after three weeks of desperation and find it after a few clicks. We dropped a melamine tray last summer, which was intrinsic to my way of life at that time. Eating in bed, on my lap, was the only option. I needed my head, neck and back supported completely and a few thick layers of duvet and blanket over my legs. This tray smashing on the kitchen floor gave us a reason to leave the house. 'Oh, great' I thought,'I can enjoy choosing one from a shelf in a department store, or kitchen shop'. "Oh, no I couldn't"- I could hear the audience chanting back at me, pantomime-style, as we couldn't find suitable alternatives anywhere. After all this excitement of going to a different shopping centre and collapsing in bed week after week, I went back to my favourite stalwart Amazon, and there they were teasing me from the page!
Researching shopping is also a must when finding clothes or shoes as the process can take such a long time and a lot of energy otherwise and I cannot take a long time, or a lot of energy! (neither can my husband's patience!) If I would prefer to try the items before buying, or the postage costs are extortionate, I find the shops, check their stocks and we appear, try and buy, if they are suitable.
I now know the local shopping centres which are accommodating to my needs; good parking facilities, flat pavements or walkways, without cobbles and only slight slopes for using the wheelchair. So always check which town we will visit to achieve the most.
The beauty of me being at home gives me the opportunity to have items sent through the post and returned if necessary. Larger items (most recently the food mixer and a new toaster) which we would otherwise have to balance on the back of the wheelchair, or on my lap, can be delivered without concerns of no one being home to sign for the items.
Food-wise I shop regularly using iPad apps, which give a quicker shop- as if I was in the store. I can usually read full lists of ingredients and also choose most of my shopping from the monthly offers. Some of the more exclusive foods can be found in health-food online shops with supplements and, as with searching out the trays, I might be going in dozens of different shops before finding what I prefer.
Thanks to Google, Amazon, Ebay and many others, my life can be a lot more focused on recovery and careful pacing than it might be otherwise!
I can and do shop for everything on-line. From shoelaces to spaghetti, from lightbulbs to lawnmowers. The funny thing is that when I search and search for something, which I think I should easily pounce on in the local shops, I end up going straight to Google after three weeks of desperation and find it after a few clicks. We dropped a melamine tray last summer, which was intrinsic to my way of life at that time. Eating in bed, on my lap, was the only option. I needed my head, neck and back supported completely and a few thick layers of duvet and blanket over my legs. This tray smashing on the kitchen floor gave us a reason to leave the house. 'Oh, great' I thought,'I can enjoy choosing one from a shelf in a department store, or kitchen shop'. "Oh, no I couldn't"- I could hear the audience chanting back at me, pantomime-style, as we couldn't find suitable alternatives anywhere. After all this excitement of going to a different shopping centre and collapsing in bed week after week, I went back to my favourite stalwart Amazon, and there they were teasing me from the page!
Researching shopping is also a must when finding clothes or shoes as the process can take such a long time and a lot of energy otherwise and I cannot take a long time, or a lot of energy! (neither can my husband's patience!) If I would prefer to try the items before buying, or the postage costs are extortionate, I find the shops, check their stocks and we appear, try and buy, if they are suitable.
I now know the local shopping centres which are accommodating to my needs; good parking facilities, flat pavements or walkways, without cobbles and only slight slopes for using the wheelchair. So always check which town we will visit to achieve the most.
The beauty of me being at home gives me the opportunity to have items sent through the post and returned if necessary. Larger items (most recently the food mixer and a new toaster) which we would otherwise have to balance on the back of the wheelchair, or on my lap, can be delivered without concerns of no one being home to sign for the items.
Food-wise I shop regularly using iPad apps, which give a quicker shop- as if I was in the store. I can usually read full lists of ingredients and also choose most of my shopping from the monthly offers. Some of the more exclusive foods can be found in health-food online shops with supplements and, as with searching out the trays, I might be going in dozens of different shops before finding what I prefer.
Thanks to Google, Amazon, Ebay and many others, my life can be a lot more focused on recovery and careful pacing than it might be otherwise!
Tuesday, 29 May 2012
When Will I Be Walking Again?
A friend asked me this question recently and I was kind of flummoxed as I don't see it as a priority. The one thing that might push that part of my recovery is that it is my husband who pushes the wheelchair when we go shopping, or even for a short 'walk'(!). I would like to stop using the wheelchair and have more control when I leave the house, but as I say it is not a priority.
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)
Saturday, 26 May 2012
Patience
My Dad taught me to play patience. His parents taught me too. It is a great pass-time for those days when I need a time-passer. It has also taught me a great thing. And I am sure you can guess what that might be!
I was playing yesterday evening. Sitting in bed with my tray and patience cards. I remembered a game I had not played for a while and decided to give it a go. It was an easier one to complete than one I had been playing the last few weeks- or so I thought. Over about 45 minutes I laid the cards out, dealt and moved them around. Each of 5 or 6 times, the game would not complete. What was going wrong? This is not unusual, a few weeks ago I laid out a similar game over and over again for an hour, without success. It wasn't until I attempted the same game a few days later that it completed three times in a row!
As I packed the cards away yesterday I noticed three cards sat next to me on the bed! They had obviously escaped the set I had been dealing with and may have been the reason this game was refusing to complete. After an instant sinking feeling, I laughed out loud and knew it had to be something I told my Dad next time I saw him- he would be laughing out loud too-LOL.
The reason I mention this phenomenon is that the card games I have been playing over the years have taught me a very good lesson. When I play alone or with others I smile all the way through. Nothing is determined in life. You are dealt your cards and you smile whether the game works out your way or not. By enjoying the process I have a much better desire to accept my situation. Knowing that it may take a few attempts to reach certain goals, gives me a strength and an acceptance if there is a necessity to deal out those cards again a few times along the way. This has happened numerous times in my illness and we have discovered sometimes that some of those cards are missing. In those times I have picked up these patience cards and started again. I smile when I am winning- who wouldn't?- and after an initial sinking feeling, I smile when I am not. Be that a smile through a full hibernation or just sitting on a choppy wave.
I was playing yesterday evening. Sitting in bed with my tray and patience cards. I remembered a game I had not played for a while and decided to give it a go. It was an easier one to complete than one I had been playing the last few weeks- or so I thought. Over about 45 minutes I laid the cards out, dealt and moved them around. Each of 5 or 6 times, the game would not complete. What was going wrong? This is not unusual, a few weeks ago I laid out a similar game over and over again for an hour, without success. It wasn't until I attempted the same game a few days later that it completed three times in a row!
As I packed the cards away yesterday I noticed three cards sat next to me on the bed! They had obviously escaped the set I had been dealing with and may have been the reason this game was refusing to complete. After an instant sinking feeling, I laughed out loud and knew it had to be something I told my Dad next time I saw him- he would be laughing out loud too-LOL.
The reason I mention this phenomenon is that the card games I have been playing over the years have taught me a very good lesson. When I play alone or with others I smile all the way through. Nothing is determined in life. You are dealt your cards and you smile whether the game works out your way or not. By enjoying the process I have a much better desire to accept my situation. Knowing that it may take a few attempts to reach certain goals, gives me a strength and an acceptance if there is a necessity to deal out those cards again a few times along the way. This has happened numerous times in my illness and we have discovered sometimes that some of those cards are missing. In those times I have picked up these patience cards and started again. I smile when I am winning- who wouldn't?- and after an initial sinking feeling, I smile when I am not. Be that a smile through a full hibernation or just sitting on a choppy wave.
Wednesday, 23 May 2012
Rooftop Knitting
Knitting is a big thing for me. My friends will know I am not a closet knitter, but a scream out loud from the rooftops knitter. It is one of the activities that gives me a gauge to measure my wellness. There might be months through the year when I don't pick up needles and yarn, there might be months through the year when I hold them every day. This is the gauge that tells me my health. Cognitive processes are involved. If I am well- so that my arms are quite fit- I might zoom across three or four rows without thinking twice. This is all very well but I might therefore have forgotten a patterned row, or a change of colour have to sit with great concentration and unpick my efforts-this is when my cognitive and physical wellness don't quite match! An easier project will mean I can knit without thinking- so much of my knitting is ingrained; I am an auto-pilot knitter. I have even been known to totally astonish myself with knitting a lace or cable pattern on auto-pilot. The months when I don't knit are usually enforced. If I knit for a couple of short sessions each day, sometimes I can do nothing else helpful or useful. My husband becomes the carer and the bearer! If I am counting stitches and he interrupts me, he takes the brunt of it. This is when I put it down, zip up the bag and hide it.
December last year was the last time I really attempted anything for myself. I was in love with my pattern, a fairIsle cardigan. But my OH was bearing too much! It was hidden. About a month later a friend asked me to knit a cardigan. It was an easier knit, being in a single colour, but it took a long time; four months for one project is unusual for me. There were weeks when I couldn't pick up the needles, just through lack of strength in my arms, weeks when I would try and abandon the attempt after 10 minutes as my brain couldn't fathom what I was doing and weeks when I might manage 3 or 4 sessions of 20-30 minutes. Having achieved that and also finished a baby blanket for another friend, I know I have a bit more time and energy to give to such a project.
So I have reached out to my dearest wool shop, found a pattern that requires time and patience and that I will enjoy. It is for me, it will give me an achievable goal. Twenty or thirty minutes of knitting here and there is a challenge, a smile, a glimpse; to sit in bed or under a blanket on the sofa and knit is something that reminds me of home, something that reminds me of all the years when I have struggled, persevered and achieved. Knitting and sewing have kept me going over the years. Small projects with little goals are perfect to motivate me through the good days and the not-so-good days. I am looking forward to wearing my french navy, wool tweed, shawl collared, short, double breasted, nipped in at the waist, front cabled with moss stitch cardigan by next Autumn. I will achieve it, I will give it my time and patience.
December last year was the last time I really attempted anything for myself. I was in love with my pattern, a fairIsle cardigan. But my OH was bearing too much! It was hidden. About a month later a friend asked me to knit a cardigan. It was an easier knit, being in a single colour, but it took a long time; four months for one project is unusual for me. There were weeks when I couldn't pick up the needles, just through lack of strength in my arms, weeks when I would try and abandon the attempt after 10 minutes as my brain couldn't fathom what I was doing and weeks when I might manage 3 or 4 sessions of 20-30 minutes. Having achieved that and also finished a baby blanket for another friend, I know I have a bit more time and energy to give to such a project.
So I have reached out to my dearest wool shop, found a pattern that requires time and patience and that I will enjoy. It is for me, it will give me an achievable goal. Twenty or thirty minutes of knitting here and there is a challenge, a smile, a glimpse; to sit in bed or under a blanket on the sofa and knit is something that reminds me of home, something that reminds me of all the years when I have struggled, persevered and achieved. Knitting and sewing have kept me going over the years. Small projects with little goals are perfect to motivate me through the good days and the not-so-good days. I am looking forward to wearing my french navy, wool tweed, shawl collared, short, double breasted, nipped in at the waist, front cabled with moss stitch cardigan by next Autumn. I will achieve it, I will give it my time and patience.
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