I had a lovely weekend, got out of the house and enjoyed some sunshine!
We went off to see Alice which was great, I really enjoyed it and then we went for a meal at the Brewers Fayre afterwards which was delicious!
It did wipe me out though and I spent the rest of the Saturday dozing on and off on the sofa all evening, I think I spent more of it asleep than awake.
Putting the clocks forward has messed me up a bit too and I've found myself waking up even earlier than normal.
Sunday was nice too, we went to Nathans town and stopped in a couple of places to have a drink and enjoy the glorious weather we got, it was lovely and sunny and warm enough not to wear a jacket which was great, it really did brighten me up and Charlotte got her first experience of skittles!
The nice weekend has filled me with motivation and today I have been printing and making up lists so I have something to do each day health permitting. I've written a weekly and monthly housework planner and got all my ESA/DLA paperwork back in order as I'd been slacking in that department.
I really wasn't keen on roping Charlotte into the housework but the bottom line is, she needs to. She won't be doing everything, I don't think that's fair at all, but she has agreed to help me with some things and take care of her own bedroom. Nathan does most of it for me and it's so unfair, he works full time as it is and the last thing I want is for him to walk in and start dancing with the hoover, his evenings should be rest time, not doing someone elses housework.
He genuinely doesn't mind and his happy to do it for me, I think it's a way he feels he knows he can help as there is nothing he can do about my pain and fatigue but I mind, I don't like the idea of him doing it.
I'm at the stage now where I know if it will tire me out too much I won't do it, rather than do it anyway and regret it later but I'm filled with frustration that I can't do more than I currently can.
I'll pay Charlotte for her help once my ESA is sorted out and/or my DLA, whichever is first, at the whopping £31 a week I'm currently receiving I can't,.but I have promised to buy her a game for the Wii when it comes out on the 23rd of April.
This week I intend to rest as much as possible as me, Nathan and my best friend June are off to the coast on Saturday. I'll go if it kills me, as much as I love my town I'm yearning to get out, to feel some freedom, to see some new scenery. I don't care if it's cold, I don't care if it's raining, I don't care if I spend the rest of the week in bed because of it, I'm bloody going!!
On the completely un-organised side of thing I've been forgetting to take my amitriptyline. I haven't taken it for 3 nights now which I have no excuses for as I have my pill reminder case right infront of me all the time. I think it's the whole '2 hours before bed' thing that's throwing me, I don't sleep at a set time, I sleep when I feel the need to, and I don't know 2 hours in advance when that will be! So this week I'm trying to be organised with it and take it at a set time roughly 2 hours before my average bedtime and if its 3 hours beforehand or only an hour, sod it, it'll do. Taking the tablet at a rough time is better than not taking it at all.
I still haven't had my form through from the council for my blue badge, it seems that the chap I spoke to has forgotten me so now I'm in limbo again of trying to decide whether to apply now and go through the checks and medical or just wait for my DLA decision and hope I get High Rate Mobility (yeahhhhhhhhhhhhh right)
I managed to get hold of Jeanine about my ESA medical form and she was her usual aloof 'I really haven't got time for this' self and I barely managed to finish a sentence and got told off for trying to be detailed as possible and telling her something 'completely irrelevant', I just hope she's in a better mood when she comes to help me on April 9th, she seemed a completely different person when she helped me with my DLA form.
Showing posts with label cinema. Show all posts
Showing posts with label cinema. Show all posts
Monday, 29 March 2010
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.
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