Well its time to update this sorry blog again! The last few weeks have been peppered with a bit of fun; which has been nice. I went to visit my cousin's baby in the end - he is beautiful - i had a little hold, which was terrifying, as i've never held a baby before! But he is such a pretty babe - i admire my cousin so much looking after 2 kids - i wouldnt know where to start. It was good to see her looking well and to have a good catch up with her.
Ive also been to a friends Birthday gathering, which was great fun; particularly watching people playing the cornflakes box game (i gave it a miss myself, far too physical for me!) But it involves bending down to pick up a cornflakes box with your teeth. It was hilarious, if not a little scary watching the more elderly relatives getting into odd positions trying to pick the box up. Am surprised noone ended up in A&E really. One guy nearly head-butted the television, and my mate's mum randomly fell over into a pot plant and spilt her drink all over her dad, (who was not pleased). It was ideal for me though, because i could just sit on the sofa the whole time and chat to old friends. I suffered for it the next day; spending most of it having to lie down, (even though i did nothing physical), but it was worth it for the fun. Sometimes i think mental stress and thinking can be worse than the physical, or at the very least, just as bad.
One thing that does annoy me, is that whenever i have to talk to anyone who i havent seen in a while/have never met, my heart starts beating really fast and i feel 'keyed up'. I cannot seem to stop this happening; t is totally involuntary, but fits with the theory that CFS sufferers produce an excess of adrenaline the whole time. from experience, i think this thery probably best fits my case. It happens when i am not nervous or panicking, and no doubt, wastes a great deal of energy. This also reinforces the theory that those with CFS are unable to tolerate stress; and i dont mean 'stress' in the true sense of the word, but rather anything that requires thought or the need to be 'on one's toes' slightly. The body just seems to over-compensate.
So today i went to my first appontment with the clinical psychologist. Just to clear up, CFS is not a psychological disorder, but a neurological one - however this doent mean that there arent psychological effects felt as a result of the condition. The appointments are to discuss any fears i might have, general things that might be worrying me and how i am managing pacing my activity and could i do it better? Although i feel physically and mentally drained after today's session (spent much of the day restain again!), i am sure it will be beneficial.
Tuesday 13 April 2010
Thursday 4 March 2010
It's lovely outside, but i can't decide what to do...
Well its a beautiful day out there - in early March as well! But this is one of those days where i can't decide what to try to tick off on my 'to do' list. In my bedroom i keep a small plastic whiteboard, and, every week i write down a few things i want to try and achieve. This affords me two pleasures; a)being able to write on a whiteboard (yes, i have never grown up) and b) being able to tick off the items as i do them, which gives me some satisfaction. This whole goal setting thing was something i learnt from the ME group. I have found it helps: having definite goals rather than vague ones makes them easier to work towards and helps me to plan my week; so i dont feel quite so useless. I know i can never do everything each week on the lists i make, but just ticking a couple is good.
On this week's list is the intention to buy some flowers for my cousin who has just given birth to a beautiful new baby. However, we are not going to visit her until next week (when i can get a lift there from my Dad), so theres no point buying them yet. Another is to deliver a long overdue Xmas present to my friend; but she has not replied yet as to when she's free, and thirdly, i wanted to visit my Grandad's graveside, because i feel like i would like to go and send some time talking to him for a while. However i know it will be far too much for me to drive all the way there and walk across the cemetary and would make me ill for a good while afterwards; so i dont quite know why that one is on the list - wishful thinking, i guess. Added to this i have to save energy for the weekend as my boyfriend is coming to stay.
This, i suppose is the problem with the limitations caused by CFS. I can do little things, but they dont always fit in with the situation/other people's plans, so very often, on days such as this, i end up doing nothing. Then comes the guilt at not having achieved something that day. Oh to be able to do anything i please at the drop of a hat.
It has occured to me that i have some old clothes to sort out - but that seems like a waste of a nice day, as do my inane ramblings on this blog!!
I did nothing yesterday either. I was hoping to go with my Dad when he took my dog to the vets, but i didnt feel well enough. Actually we had rather a scare with her yesterday. She suddenly became very lethargic and coudln't even jump up onto the sofa. She is now on a course of antibiotics for a suspected chest infection, although the vet wasnt sure she had one. she thankfully seems a lot better today, although still not quite as bouncy as usual. I was so worried yesterday and in tears. My dog is my life, my ray of sunshine.
Anyway i had better sign off, before the day is wasted away. Back later :)
On this week's list is the intention to buy some flowers for my cousin who has just given birth to a beautiful new baby. However, we are not going to visit her until next week (when i can get a lift there from my Dad), so theres no point buying them yet. Another is to deliver a long overdue Xmas present to my friend; but she has not replied yet as to when she's free, and thirdly, i wanted to visit my Grandad's graveside, because i feel like i would like to go and send some time talking to him for a while. However i know it will be far too much for me to drive all the way there and walk across the cemetary and would make me ill for a good while afterwards; so i dont quite know why that one is on the list - wishful thinking, i guess. Added to this i have to save energy for the weekend as my boyfriend is coming to stay.
This, i suppose is the problem with the limitations caused by CFS. I can do little things, but they dont always fit in with the situation/other people's plans, so very often, on days such as this, i end up doing nothing. Then comes the guilt at not having achieved something that day. Oh to be able to do anything i please at the drop of a hat.
It has occured to me that i have some old clothes to sort out - but that seems like a waste of a nice day, as do my inane ramblings on this blog!!
I did nothing yesterday either. I was hoping to go with my Dad when he took my dog to the vets, but i didnt feel well enough. Actually we had rather a scare with her yesterday. She suddenly became very lethargic and coudln't even jump up onto the sofa. She is now on a course of antibiotics for a suspected chest infection, although the vet wasnt sure she had one. she thankfully seems a lot better today, although still not quite as bouncy as usual. I was so worried yesterday and in tears. My dog is my life, my ray of sunshine.
Anyway i had better sign off, before the day is wasted away. Back later :)
Sunday 21 February 2010
A lot has happened
Well once again it's been months since i updated this blog. This is partly owing to all the things that have been happening lately, and the fact that i am trying to wean myself off spending too much time on the internet. How can i summarize everything thats happened and its depths of emotion in a few short words. The first thing is, shortly after my Birthday, i got engaged! My fiance and i went for a drive to a local beauty spot where he gave me a watch as a gift. He told me to turn it over and on the back he'd had had it engraved with the question! It was very sweet so now, i am trying to get better so that i can have a 'normal' wedding day, with dancing and standing around for hours etc, like normal people do!!
On a very sad note, we lost my beloved Grandad shortly before Chrsitmas. I wont go into the details and feeling too mcuh on here because they are private and words can do justice to how we felt and how much i miss him. On Chrsitmas day we opened his Xmas present, which was a small Chrsitmas lantern that plays music, with ice skaters around a Chrsitmas tree. I put it on the windowsill where i hoped he could see it, and sat for a while. I still believe he is with us and i stil talk to him. I know if i was gone i would want people to believe that i was still watching over them; just because we cant see him, doesnt mean he cant see us. I always wear a locket with his photo too. I love you Grandad, you will always be in my heart xxx
I have just returned from staying a few days with my boyfriend and i have several things on my 'to do' list - one of which is to take grandad some flowers and to try and get to the local shop to buy a Birthday card for my friend. I like to have little goals to set myself each week, it keeps me going. It's one of the many things i learnt from attending the M.E. rehab course, which i have found has been most helpful and facilitated some recovery. Although my energy is still well below normal, i am finding that the relapses are not as severe and of shorter duration, which means i can do things slightly more often, which, in my book, is great! The course finished around 3 weeks ago now, and i met some good friends through attending it. It turned out that i had spent the weeks leading upto it in unjustifiable dread, because it turned out to be a very positive experience. It lasted a couple of hours and was run by 3 really nice ladies who talked us through ways of managing the illness, and some weeks we had guest speakers (psychologists, dieticians, etc). It was held in a Methodist church and there was a little kitchen outside with free tea and coffee where we used to have our (regular) breaks and chats! Cant be bad!
Anyway, as promised, here are some of the things i learnt that helped me a great deal. Please note this course was for people with mild to moderate M.E.
Plan scheduled rests into your day (at same times each day -as many as you need), but keep them short (no more than 30 mins), and do something slightly physical afterwards to get going again. If you rest any longer than 30 mins at a time, your body slows down and its harder to get going. Even just walking around the room or sitting up every half hour helps.
Use relaxation exercises as part of your rests - this is vital! You must rest your mind as well as body!
Rest in complete silence (unless using a relaxation CD) DONT use these while driving though obviously!!
Try and get a balance of physical/mental/social activity each day - dont do all physical one day, all mental the next, for example.
Eat something every 2 hours or so, even of its only a biscuit.
Eat a balanced diet. You can have foods with a high Glycaemic index (please google this), as long as you mix it with foods with a lower glycaemic index. This helps keep your sugar levels more blanced and helps avoid energy crashes.
Short pauses when doing things helps lower adrenaline and gives the body a rest. Pausing for 3 mins can reduce adrenaline by 50% (apparently!)
Dont do the same thing for too long - mix and match mental/physical/social activity so that you are using different parts of the brain and allowing each part of the brain time to rest.
Do one thing at a time - dnt have tv on in background while you're trying to do something else, etc.
Get up at same time each day, get dressed if you can.
Set a goal each day/week however small it doesnt matter!
Use the tortoise and hare approach. For e.g. you might not be able to do housework for an hour, non-stop, but if you break it into chunks of 15 mins with rests in between, it might be manageable (This is only an example, it must be tailored to your own needs).
Improvement should be seen as being like a staircase rather than a continual curve upwards. So if you're at a certain 'baseline' activity level which does not worsen your symptoms, maintain that for a while before increasing -you should not try to increase activity on a daily basis. Increases should only be of about 10% of what you can currently comfortably manage. Once an increase has been made, you should monitor the effect for a week or so to check its not too much for you. If it is, you should lower the 'baseline' again. It is important to find the right balance between rest and activity.
Hope this helps!!
On a very sad note, we lost my beloved Grandad shortly before Chrsitmas. I wont go into the details and feeling too mcuh on here because they are private and words can do justice to how we felt and how much i miss him. On Chrsitmas day we opened his Xmas present, which was a small Chrsitmas lantern that plays music, with ice skaters around a Chrsitmas tree. I put it on the windowsill where i hoped he could see it, and sat for a while. I still believe he is with us and i stil talk to him. I know if i was gone i would want people to believe that i was still watching over them; just because we cant see him, doesnt mean he cant see us. I always wear a locket with his photo too. I love you Grandad, you will always be in my heart xxx
I have just returned from staying a few days with my boyfriend and i have several things on my 'to do' list - one of which is to take grandad some flowers and to try and get to the local shop to buy a Birthday card for my friend. I like to have little goals to set myself each week, it keeps me going. It's one of the many things i learnt from attending the M.E. rehab course, which i have found has been most helpful and facilitated some recovery. Although my energy is still well below normal, i am finding that the relapses are not as severe and of shorter duration, which means i can do things slightly more often, which, in my book, is great! The course finished around 3 weeks ago now, and i met some good friends through attending it. It turned out that i had spent the weeks leading upto it in unjustifiable dread, because it turned out to be a very positive experience. It lasted a couple of hours and was run by 3 really nice ladies who talked us through ways of managing the illness, and some weeks we had guest speakers (psychologists, dieticians, etc). It was held in a Methodist church and there was a little kitchen outside with free tea and coffee where we used to have our (regular) breaks and chats! Cant be bad!
Anyway, as promised, here are some of the things i learnt that helped me a great deal. Please note this course was for people with mild to moderate M.E.
Plan scheduled rests into your day (at same times each day -as many as you need), but keep them short (no more than 30 mins), and do something slightly physical afterwards to get going again. If you rest any longer than 30 mins at a time, your body slows down and its harder to get going. Even just walking around the room or sitting up every half hour helps.
Use relaxation exercises as part of your rests - this is vital! You must rest your mind as well as body!
Rest in complete silence (unless using a relaxation CD) DONT use these while driving though obviously!!
Try and get a balance of physical/mental/social activity each day - dont do all physical one day, all mental the next, for example.
Eat something every 2 hours or so, even of its only a biscuit.
Eat a balanced diet. You can have foods with a high Glycaemic index (please google this), as long as you mix it with foods with a lower glycaemic index. This helps keep your sugar levels more blanced and helps avoid energy crashes.
Short pauses when doing things helps lower adrenaline and gives the body a rest. Pausing for 3 mins can reduce adrenaline by 50% (apparently!)
Dont do the same thing for too long - mix and match mental/physical/social activity so that you are using different parts of the brain and allowing each part of the brain time to rest.
Do one thing at a time - dnt have tv on in background while you're trying to do something else, etc.
Get up at same time each day, get dressed if you can.
Set a goal each day/week however small it doesnt matter!
Use the tortoise and hare approach. For e.g. you might not be able to do housework for an hour, non-stop, but if you break it into chunks of 15 mins with rests in between, it might be manageable (This is only an example, it must be tailored to your own needs).
Improvement should be seen as being like a staircase rather than a continual curve upwards. So if you're at a certain 'baseline' activity level which does not worsen your symptoms, maintain that for a while before increasing -you should not try to increase activity on a daily basis. Increases should only be of about 10% of what you can currently comfortably manage. Once an increase has been made, you should monitor the effect for a week or so to check its not too much for you. If it is, you should lower the 'baseline' again. It is important to find the right balance between rest and activity.
Hope this helps!!
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