I can't explain how I feel, I'm all out of sorts. I'm exhausted but not in the usual way. I'm starving but too tired to cook, the spring cleaning bug has hit me and again, I'm too tired to do anything about it.
I haven't got the heavy feeling I usually have when I'm tired, motivation is an all time zero but my body feels ok, no heaviness, the pain is minimal but I still can't get myself going. If my body usually felt like this I would class it as a better day but I'm just as bad as I am on a no spoons day but with a different feeling.
I don't know if it's the amitriptyline, I wouldn't have thought it would affect me so soon but nothing else seems to explain it.
I've been snoozing on and off all day. Usually if I'm sleepy I'll settle down to an hour or two and then I'm ok again but today I have been half asleep and half awake all day but not feeling any gain from the naps.
Just a really, odd, unknown feeling and I'm not comfortable with it at all, it's almost like I'm not within my body?
Sorry for the babble, just want to get it written down while it's fresh in mind and feeling.
Friday, 26 March 2010
Good weekend coming up
Amitriptyline Day 2: Took a while to drop off, and was wide awake around 4.50am, which in todays case was fabulous because I wanted to be up for the Australian GP Practice at 5.30am, but on any other day I wouldn't have been amused as it will probably mean an afternoon nap which naffs up my sleep pattern completely.
On the good side I have woken up quite alert unlike yesterday.
I was too ill to go with Charlotte back to the hospital yesterday which I was incredibly annoyed and frustrated with. It's situations like this that really, really get me down about this awful disorder I have. I try to keep as positive as possible but when it robs me of being with my daughter in an incredibly important time I just want to explode with rage and fury.
I didn't miss much, it was just a case of them removing the ECG and that was it, no results from it as yet, but I should have been with her. Thank heavens for Nathan, I couldn't cope without him.
On a brighter note I am happier this morning as I seem to have mostly recovered from the hospital trip and if this carries on I'll feel ok to go to the cinema tomorrow to see Alice. And ofcourse I have the Australian GP to look forward to!!! One thing I haven't really talked about too much - my big geekdom hobby which is the F1 season. I am obsessive about it and I'm a die hard McLaren fan!
P1 was at 1.30am and P2 was at 5.30am so I made the horrible choice of missing P1 in favour of grabbing P2 so I got some sleep. P3 is at 3am tonight and I'm currently deciding whether to go back to sleep once Charlotte is off to school so I can stay up later, or go to bed really early and get up for 3am to catch it and then qualifying at 6am, I'll be glad when the season heads back to Europe!
On the good side I have woken up quite alert unlike yesterday.
I was too ill to go with Charlotte back to the hospital yesterday which I was incredibly annoyed and frustrated with. It's situations like this that really, really get me down about this awful disorder I have. I try to keep as positive as possible but when it robs me of being with my daughter in an incredibly important time I just want to explode with rage and fury.
I didn't miss much, it was just a case of them removing the ECG and that was it, no results from it as yet, but I should have been with her. Thank heavens for Nathan, I couldn't cope without him.
On a brighter note I am happier this morning as I seem to have mostly recovered from the hospital trip and if this carries on I'll feel ok to go to the cinema tomorrow to see Alice. And ofcourse I have the Australian GP to look forward to!!! One thing I haven't really talked about too much - my big geekdom hobby which is the F1 season. I am obsessive about it and I'm a die hard McLaren fan!
P1 was at 1.30am and P2 was at 5.30am so I made the horrible choice of missing P1 in favour of grabbing P2 so I got some sleep. P3 is at 3am tonight and I'm currently deciding whether to go back to sleep once Charlotte is off to school so I can stay up later, or go to bed really early and get up for 3am to catch it and then qualifying at 6am, I'll be glad when the season heads back to Europe!
Thursday, 25 March 2010
Amitriptyline
Not impressed so far, not at all.
I have woken up feeling the worst I've felt for a very long time.
I feel so sluggish, I ache more than usual and can barely move and I don't feel any refreshment from my sleep at all, I feel just as exhausted and wiped out as I did when I went to sleep. I usually feel somewhat alert in the mornings even though I rarely feel refreshed from my sleeps but it's never been this bad. I literally feel like I didn't sleep a wink last night when I know I was spark out within 10 minutes.
I can't solely blame the amitriptyline, yesterdays Krypton Factor adventure could also be a factor but good grief it's taken me all the morning to peel myself off the sofa to write this entry so it's recorded as my mind is slowly turning to goo lately.
That pill reminder thingy I ordered from ebay came yesterday so that should be a big help as I was getting very forgetful with just 1 tablet a day and now I have to take 2.
This is all I'm going to write for now, I just wanted to record the morning after amitriptyline.
I have woken up feeling the worst I've felt for a very long time.
I feel so sluggish, I ache more than usual and can barely move and I don't feel any refreshment from my sleep at all, I feel just as exhausted and wiped out as I did when I went to sleep. I usually feel somewhat alert in the mornings even though I rarely feel refreshed from my sleeps but it's never been this bad. I literally feel like I didn't sleep a wink last night when I know I was spark out within 10 minutes.
I can't solely blame the amitriptyline, yesterdays Krypton Factor adventure could also be a factor but good grief it's taken me all the morning to peel myself off the sofa to write this entry so it's recorded as my mind is slowly turning to goo lately.
That pill reminder thingy I ordered from ebay came yesterday so that should be a big help as I was getting very forgetful with just 1 tablet a day and now I have to take 2.
This is all I'm going to write for now, I just wanted to record the morning after amitriptyline.
Wednesday, 24 March 2010
I hate hospitals!
Today was a rare excursion out of the house, back to the hospital but this time for Charlotte.
She was diagnosed with a heart murmur a couple of weeks back and today was finally her 'urgent' appointment to the hospital.
I didn't like her doctor at all, but we got through the appointment. He didn't hear the murmur but he said they can come and go so now Charlotte is currently sat on the sofa hooked up to a portable ECG machine that is recording her heart rate over the next 24 hours.
Typically the ECG department was what felt like miles away from the paediatric department and then once that was all fitted off we went to the pathology department because she needed blood tests too.
Outpatients was heaving and trying to get past people on my crutches was a nightmare and it seems you become invisible too, I had people trying to squeeze by me and kicking my crutches, people just suddenly turning in front of me and making me suddenly stop so my crutches don't go into their heels, it was ridiculous!
So now after my trip to the Krypton Factor obstacle course, better known as Kettering General Hospital I'm now sat here with the backlash. Legs are in extreme pain and jerking all over the place, a headache of doom and I feel like I've run more marathons than Eddie Izzard and tomorrow I have to do it again as we need to go back to the ECG department to give back Charlotte's monitor. Joy upon joy!
Luckily my gland/ear thing seemed short lived and those have both gone now so I'm feeling slightly more human.
I got letter from the hospital about physiotherapy and I have been told there is a 7 week waiting list so that's on hold for the time being.
Today is day 1 of my Amitriptyline. I've been prescribed 10mg and have to take it 2 hours before bed. I'm yawning my head off and my eyelashes are aching so I took it at 20 past 8 but I'm not sure I'm going to make the 2 hours before I fall asleep!
I've not really had the energy to Google it tonight but I'm going to look more into Amitriptyline tomorrow and it's use with ME/CFS. From what I have previously read it's prescribed for better sleep and pain, both things which I'm having trouble with, especially the pain.
So many friends told me tramadol is supersonic and does the job really well, it wouldn't even take a headache away for me but ME/CFS sufferers do seem to have an intolerance to normal pain relief which is why Amitriptyline is used in small doses so maybe (hopefully!) this will work for the pain because it's draining so badly on top of the extreme fatigue I already have. Codeine seems to work for me in some cases, but it unsettles my tummy so I try to take it only when I really really need to.
I'm looking forward to the weekend, I have booked tickets to see Alice in Wonderland 3D for me, Nathan, Charlotte and Nathans eldest daughter Beth. As silly as it sounds the cinema is quite cathartic for me. I get out of the house without having to walk far, get to sit down so not to tire me out too much and get whisked off to a fantasy world for a couple of hours which heals the cabin fever quite nicely and refreshes me. Sitting for so long does make me begin to ache but the film is quite a distraction and I top myself up on painkillers before the film and I seem to be ok. If I'm having a no spoons day I won't go because even sitting in the same position will about kill me, so I'm hoping I haven't jinxed things by booking the tickets today and I'll be able to go.
She was diagnosed with a heart murmur a couple of weeks back and today was finally her 'urgent' appointment to the hospital.
I didn't like her doctor at all, but we got through the appointment. He didn't hear the murmur but he said they can come and go so now Charlotte is currently sat on the sofa hooked up to a portable ECG machine that is recording her heart rate over the next 24 hours.
Typically the ECG department was what felt like miles away from the paediatric department and then once that was all fitted off we went to the pathology department because she needed blood tests too.
Outpatients was heaving and trying to get past people on my crutches was a nightmare and it seems you become invisible too, I had people trying to squeeze by me and kicking my crutches, people just suddenly turning in front of me and making me suddenly stop so my crutches don't go into their heels, it was ridiculous!
So now after my trip to the Krypton Factor obstacle course, better known as Kettering General Hospital I'm now sat here with the backlash. Legs are in extreme pain and jerking all over the place, a headache of doom and I feel like I've run more marathons than Eddie Izzard and tomorrow I have to do it again as we need to go back to the ECG department to give back Charlotte's monitor. Joy upon joy!
Luckily my gland/ear thing seemed short lived and those have both gone now so I'm feeling slightly more human.
I got letter from the hospital about physiotherapy and I have been told there is a 7 week waiting list so that's on hold for the time being.
Today is day 1 of my Amitriptyline. I've been prescribed 10mg and have to take it 2 hours before bed. I'm yawning my head off and my eyelashes are aching so I took it at 20 past 8 but I'm not sure I'm going to make the 2 hours before I fall asleep!
I've not really had the energy to Google it tonight but I'm going to look more into Amitriptyline tomorrow and it's use with ME/CFS. From what I have previously read it's prescribed for better sleep and pain, both things which I'm having trouble with, especially the pain.
So many friends told me tramadol is supersonic and does the job really well, it wouldn't even take a headache away for me but ME/CFS sufferers do seem to have an intolerance to normal pain relief which is why Amitriptyline is used in small doses so maybe (hopefully!) this will work for the pain because it's draining so badly on top of the extreme fatigue I already have. Codeine seems to work for me in some cases, but it unsettles my tummy so I try to take it only when I really really need to.
I'm looking forward to the weekend, I have booked tickets to see Alice in Wonderland 3D for me, Nathan, Charlotte and Nathans eldest daughter Beth. As silly as it sounds the cinema is quite cathartic for me. I get out of the house without having to walk far, get to sit down so not to tire me out too much and get whisked off to a fantasy world for a couple of hours which heals the cabin fever quite nicely and refreshes me. Sitting for so long does make me begin to ache but the film is quite a distraction and I top myself up on painkillers before the film and I seem to be ok. If I'm having a no spoons day I won't go because even sitting in the same position will about kill me, so I'm hoping I haven't jinxed things by booking the tickets today and I'll be able to go.
Saturday, 20 March 2010
CFS says no
I caved yesterday and did go for a sleep. Got a (disturbed) couple of hours which did help and I still managed to sleep reasonably well last night. Woke up at 5am but managed to snooze until 7 when I'd had enough and got up.
A couple of people sent me links to something called The Spoon Theory on a website called butyoudontlooksick.com. It's a VERY good way of trying to explain a chronic illness like ME/CFS. Please do read it HERE.
Typically today has turned out to be a 'no spoons' day. I've woken up feeling crap. The chances of me getting out or doing anything today are a big fat zero, damn and buggeration. Not that the weather is up to much anyway I suppose.
I'm not sure if it's just the ME/CFS or something else brewing. My ears are aching and even more so when I swallow, but my glands often swell thanks to the ME/CFS so I don't know if it's related or I'm coming down with yet another viral infection, the culprit Dr Sam and I think eventually caused my ME/CFS because I was getting so so many and never able to recover properly from one before another hit.
Let's hope by resting today I might be able to gather a couple of spoons for tomorrow!
A couple of people sent me links to something called The Spoon Theory on a website called butyoudontlooksick.com. It's a VERY good way of trying to explain a chronic illness like ME/CFS. Please do read it HERE.
Typically today has turned out to be a 'no spoons' day. I've woken up feeling crap. The chances of me getting out or doing anything today are a big fat zero, damn and buggeration. Not that the weather is up to much anyway I suppose.
I'm not sure if it's just the ME/CFS or something else brewing. My ears are aching and even more so when I swallow, but my glands often swell thanks to the ME/CFS so I don't know if it's related or I'm coming down with yet another viral infection, the culprit Dr Sam and I think eventually caused my ME/CFS because I was getting so so many and never able to recover properly from one before another hit.
Let's hope by resting today I might be able to gather a couple of spoons for tomorrow!
Friday, 19 March 2010
Must.Stay.Awake
Dammit, I'm flagging.
Edging closer and closer to going for an afternoon sleep but I know it's gonna bugger things up later and I'll be wide awake at 3am.
But ohhhh boy do I want to sleep.
I thought I was doing well today, managed to get dressed which was inspired by taking delivery of my McLaren team t-shirt but I think that's probably been the cause of my deflation this afternoon. As stupid as it sounds (see yesterdays rant)getting dressed utterly exhausts me.
I'm hoping I'm somewhat better tomorrow so I can get out of the house a bit with Nathan, even if it's just to the local for a couple of pints. Cabin fever is kicking in again since I escaped these 4 walls to go to the hospital.
Those leg jerks I've been having have travelled up my body today, I sort of twist at the hips all of a sudden now too, it's really bizarre!
I'll be a pro body popper in a few weeks at this rate..
Edging closer and closer to going for an afternoon sleep but I know it's gonna bugger things up later and I'll be wide awake at 3am.
But ohhhh boy do I want to sleep.
I thought I was doing well today, managed to get dressed which was inspired by taking delivery of my McLaren team t-shirt but I think that's probably been the cause of my deflation this afternoon. As stupid as it sounds (see yesterdays rant)getting dressed utterly exhausts me.
I'm hoping I'm somewhat better tomorrow so I can get out of the house a bit with Nathan, even if it's just to the local for a couple of pints. Cabin fever is kicking in again since I escaped these 4 walls to go to the hospital.
Those leg jerks I've been having have travelled up my body today, I sort of twist at the hips all of a sudden now too, it's really bizarre!
I'll be a pro body popper in a few weeks at this rate..
Thursday, 18 March 2010
Yooo Hoooo?
I think I've turned invisible you know.
Not including my mum and brother, I have Nathan, and my best friend June.
I have 782 texts in my mobile inbox because I never get round to deleting them, over 700 of those 782 are from Nathan, my received calls list consists of June and Charlottes school.
I know this reads as a WOE IS ME post and an I WANT ATTENTION NOW!! post, but it's not that, it's just another symptom of the ME/CFS thats invisible. The loss of friends, work and a social life, a part of this god awful disorder that no-one even thinks about.
I feel so cut off and isolated being stuck in the house and 100% reliant on Nathan if I'm up to going out but even more so when you suddenly realise it's been weeks or more since you heard from people you miss.
I don't know what bought this to the forefront for me today, most likely the incredibly patronising and aloof tone of the woman from the council today when I said I couldn't make it to the office to bring in some paperwork, I said I couldn't make it because I have ME, not because I couldn't be arsed. I WOULD come to your lovely office if I could, I would hop, skip and dance and relish in the sunlight and fresh air that this time of year brings if I could. But I can't, and DON'T sodding patronise me because I'm ILL, not LAZY.
Not including my mum and brother, I have Nathan, and my best friend June.
I have 782 texts in my mobile inbox because I never get round to deleting them, over 700 of those 782 are from Nathan, my received calls list consists of June and Charlottes school.
I know this reads as a WOE IS ME post and an I WANT ATTENTION NOW!! post, but it's not that, it's just another symptom of the ME/CFS thats invisible. The loss of friends, work and a social life, a part of this god awful disorder that no-one even thinks about.
I feel so cut off and isolated being stuck in the house and 100% reliant on Nathan if I'm up to going out but even more so when you suddenly realise it's been weeks or more since you heard from people you miss.
I don't know what bought this to the forefront for me today, most likely the incredibly patronising and aloof tone of the woman from the council today when I said I couldn't make it to the office to bring in some paperwork, I said I couldn't make it because I have ME, not because I couldn't be arsed. I WOULD come to your lovely office if I could, I would hop, skip and dance and relish in the sunlight and fresh air that this time of year brings if I could. But I can't, and DON'T sodding patronise me because I'm ILL, not LAZY.
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