I know what triggered it, even though it was 7 years ago its etched into my memory. I had taken the children swimming. Rich was just learning to swim at that stage, so while Becky did her thing I stayed with Rich making sure he didn't drown completely. We had been in the pool an hour and I was cold. Although the "little pools" are supposed to be warm, they never feel it after a while. It took me quarter of an hour to get the children out and by this time I was shivering, so much so that I couldn't get the key into the lock of the locker. About a week later I went down with a chest infection which laid me low for five weeks.
That was March, into April. Then came July and one day I was fine and the next day I felt ill. It was as if a cloud had just dropped everything it had onto me. I was hot, my joints were really painful, I ached and I was so tired. I carried on like this for a week and then went to the GP. That was the start of 6 months of investigations, referrals to a rheumatologist and endless blood tests. The inital diagnosis was Lupus and scared the hell out of me. Luckily, after a few months the tests for it starting coming back negative, instead of positive, and the thought process began again. Eventually M.E was diagnosed, still a pain in the arse, but far better than Lupus!
For the first year of the illness I think I slept for at least a total of 6 months on top of the normal nights sleep! I even remember falling asleep whilst on the phone one day to my Dad! Darn right rude of me but I just couldn't keep my eyes open. I felt as if I was sleeping my life away, but couldn't do anything to stop it. Each year I seem to have been affected slightly differently, varying from chronic tiredness, to more painful, flu like, on fire, joint pain, sore throat and nausea. I have forgotten what it feels like to be refreshed after sleep. Most of the time I feel like I have very low grade flu and always, always tired. I am one hot mama too, sadly tho its due to my body's inability to control its temperature efficiently rather than being "hot".
I get flare ups too, when I get all of the symptoms rolled into one huge argggghhh! Sleep is the only way out, that and plenty of pain killers. Just have to go with the flow until it works its way out of my system.
I was under the hospitals care for a year, and they "train" you to live your life carefully. What to do, what not to do and how to pace yourself. Forget this at your peril. What you do today will come and bite you on the bum tomorrow! No ifs, no buts, it will happen. There is a big temptation when you have a good day to make the most of it and go crazy. Can't be done. Payback is a very important word when you have M.E. I also had a course of CBT, cognitive behaviour therapy. The only help I felt this gave me was to be able to say No and stand up for myself, no small thing actually. Its very difficult when you look and act ok, but underneath you are fighting a battle. People only see you as unwell if you have outward signs. How can you explain that actually, just talking to someone for a length of time is enough to feel the need for your bed!
It has obviously impacted hugely on my life, and that of my family. There are too many occasions to count when I have said we will do something, go somewhere etc, and have to pull out and disappoint them. Another symptom is brain fog. Sometimes I am unable to hold a rational conversation because I physically can't pull the words together in my brain. I am forgetful and confused, and whilst sometimes I can laugh about it, I hate it. I know I am slow and it frustrates me, but frustrates Matthew more. He has to make so many allowances for me, and he does, but he worries about my state of mind at times.
All in all as you may have realised, life is a constant battle for me. I have to battle with myself to get up in the mornings, because I am just so tired I want to stay where I am. I guess I must have a fairly strong will because the temptation to give up and hibernate is always there, lurking like a black cloud.
I am going to see The Feeling on Sunday. Instead of looking forward to it I am dreading it because there are no seats and I have to stand all night. Last time I saw them at The Academy I had a total energy drain afterwards and had to sit down for half an hour before I could leave! Mind you, that gave the band time to pack up and we got to meet them outside the venue. I had to pull out of two gigs earlier in the year because I just wasn't up to going. Even when I went to see Olly Murs I sat down and couldn't see anything because everyone else was standing. He sounded great tho!
Well that is a bit of an insight into M.E from my perspective. I have tried not to moan and just be factual. You all know how much it gets me down, I am not the happy bunny I used to be, its hard when you are always tired at the very least to be positive. I try not to moan too much, it gets boring, but sometimes I just want to let it all out.
All my family and friends are fantastic and help me where they can, and for that I love them and thank them from the bottom of my hot heart!
Thursday 29 September 2011
Wednesday 28 September 2011
families and a London Blue Topaz to make my day!
Have had a long chat with my sister, and apparently the consultant has reassured her that the cancer she has is contained and once her eye is removed that will be the end of it. Thats a relief. Obviously its not nice that she has to lose her eye, but she is trying to be positive and says she can't see out of it anyway, so it will make no difference. She goes in for surgery on 17th October, so I hope it will all be ok for her.
As for Dad, he has fluid building up in his abdomen again. The GP who came out Monday said that in view of the fact he has a hospital appointment on Friday, he would leave it. I had to explain to Dad again that this is as good as it gets for him. He will not get better, He didn't understand the first time round, but we discussed what the GP has said to me and it seems to have given him a bit of a kick up the bum mentally. He realises he has to adjust to this new way of life and make the best of it, and being my brilliant Dad, he has. He still doesn't have the strength to look after himself, and its doubtful he ever will, but I am happy to keep cooking and washing for him. Not so happy on the shopping front, but thats just me, hate doing my own shopping. Dad isn't a once a week shopper, so I find myself at the shops at least every other day :o(
I hope he will be able to manage the visit to the hospital, he needs to go in person now so his abdomen can be examined again. The GP has said he is happy to do housevisits, and they will talk about his care in time. That didn't sound too good to me and makes me worry about how bad things are going to get. I have read about liver failure on the internet so I know roughly how it may go.
When my sister told me her news it shook me. People often say you never know whats around the corner and its true. I think I may become a born again live for the moment sort of person! This is my excuse building up here, though a lot of people wouldn't need an excuse. Let me explain. I have wanted a London blue topaz ring for a long, long time, but have never managed to find one just the right shade, size of stone, or price. Never all three properties at once. Every few months I look on ebay, and you may remember I bought a blue topaz, but it just wasn't right and I will shortly be trying to sell it! Anyway, Friday I was bored so started on my search again, and there it was. A beautiful london blue, right size stone and in my size!! For the first time ever I thought sod the price, and bought it! Talk about living dangerously!! It arrived yesterday and I am so pleased with it, its just fantastic and I love it. Of course now I am scared I am going to lose the stone because its so beautiful and it would be just my luck! Anyway, if hubby notices it I will obviously have to spill the beans, but until then? Well, we all need a little guilty pleasure every now and then :o)
As for Dad, he has fluid building up in his abdomen again. The GP who came out Monday said that in view of the fact he has a hospital appointment on Friday, he would leave it. I had to explain to Dad again that this is as good as it gets for him. He will not get better, He didn't understand the first time round, but we discussed what the GP has said to me and it seems to have given him a bit of a kick up the bum mentally. He realises he has to adjust to this new way of life and make the best of it, and being my brilliant Dad, he has. He still doesn't have the strength to look after himself, and its doubtful he ever will, but I am happy to keep cooking and washing for him. Not so happy on the shopping front, but thats just me, hate doing my own shopping. Dad isn't a once a week shopper, so I find myself at the shops at least every other day :o(
I hope he will be able to manage the visit to the hospital, he needs to go in person now so his abdomen can be examined again. The GP has said he is happy to do housevisits, and they will talk about his care in time. That didn't sound too good to me and makes me worry about how bad things are going to get. I have read about liver failure on the internet so I know roughly how it may go.
When my sister told me her news it shook me. People often say you never know whats around the corner and its true. I think I may become a born again live for the moment sort of person! This is my excuse building up here, though a lot of people wouldn't need an excuse. Let me explain. I have wanted a London blue topaz ring for a long, long time, but have never managed to find one just the right shade, size of stone, or price. Never all three properties at once. Every few months I look on ebay, and you may remember I bought a blue topaz, but it just wasn't right and I will shortly be trying to sell it! Anyway, Friday I was bored so started on my search again, and there it was. A beautiful london blue, right size stone and in my size!! For the first time ever I thought sod the price, and bought it! Talk about living dangerously!! It arrived yesterday and I am so pleased with it, its just fantastic and I love it. Of course now I am scared I am going to lose the stone because its so beautiful and it would be just my luck! Anyway, if hubby notices it I will obviously have to spill the beans, but until then? Well, we all need a little guilty pleasure every now and then :o)
Friday 23 September 2011
Yet more cr*p :o(
Well doesn't life suck. My sister has had what she thought was a cateract, which now turns out to be a malignant tumour on the back of her eye. She has to have her eye removed next month. The cruel twist to this is that our Mum had cancer which started on her eyelid and spread throughout her body, killing her. Mum also had to have her eye removed, along with half of her jaw. What my sis is going through, I can't imagine. I have fallen apart today, I just can't believe it. I just feel numb.
Thursday 22 September 2011
Maybe I should go back to bed = ha ha
Ok, lets get down to business. Who decided that today would be "one of those days"? I certainly didn't, yet so far it is!
For a while Richs' phone has been freezing when he tries to use it and I have had a few half hearted attempts to get it sorted. This morning I took the proverbial bull by the horns and stuck it out trying to get thru to Virgin Mobile. Well, twenty minutes and heaven only knows how many options later, I finally got to speak to a person. Admittedly, he was south african I couldn't understand him very well, but he was certainly real. I have this thing about people not being understood. My older two offspring say I am racist - this is not at all the case, but I feel that people who can't speak English and be understood should not be dealing with the public! I hate the south african accent and find it hard to decipher, especially over a phone line, so the phone call involved a fair amount of guess work on my part! Anyway, upshot of it all was that I needed Richs' phone with me so he could diagnose the problem. Of course, Rich has taken it to school so that's that until tonight.
Next it was tea making. I am working this afternoon and so prepared a lasagne for everyone so I don't have to cook when I get home. No mushrooms. Not a big deal, but we eat a lot of mushrooms in our house and it just doesn't seem right without them! Ok, mince prepared, lasagne sheets softening in the simmering water, lets get on with the sauce. First "oh bugger" was too much flour, so instead of a paste I had a lot of lumps. Should have rectified it but carried on, got lots to do this morning. Add the milk, of which I have now run out! Bugger, still lumpy. Look for my whisk. Now, I need to ask you, have you pinched/hidden my whisk? I can't make a roux without it. Ended up using a fork, which took the bottom of the supposedly non stick pan off so now there are black bits in the sauce. That was the second "oh bugger" moment. I then left the sauce to thicken whilst I sorted out the sheets of lasagne into the dish. They were hot! "Oh bugger and ouch!" Drain the water, and half the sheets into the sink. Big sighs all round. Ok, sheets into the dish, mince on top, more sheets. Then I remember the cheese sauce thickening, or burning.
Some days I am not safe to be let loose. Anyway, the lasagne is prepared, in the oven on the self timer, and hopefully Becky will get it out and onto the plates safely. Forgot to tell the children I am working so have texted them so they don't wonder where I am. As long as there is food left for them they won't miss me lol.
I have walked the dog and done two loads of washing. Am I crazy? I also need to pop to Yate to get more milk so I can have a cuppa and sort out Dads lunch and tea before I go to work. I hope that by this afternoon I will be more capable and the rest of the day runs smoothly. Of course, I could spill mouthwash over the patients, drop instruments on the floor, take someones tonsils out and fall off the stool. The list is endless. Now I have myself worried. Just thankful the patients can't read this blog. Ha ha!
For a while Richs' phone has been freezing when he tries to use it and I have had a few half hearted attempts to get it sorted. This morning I took the proverbial bull by the horns and stuck it out trying to get thru to Virgin Mobile. Well, twenty minutes and heaven only knows how many options later, I finally got to speak to a person. Admittedly, he was south african I couldn't understand him very well, but he was certainly real. I have this thing about people not being understood. My older two offspring say I am racist - this is not at all the case, but I feel that people who can't speak English and be understood should not be dealing with the public! I hate the south african accent and find it hard to decipher, especially over a phone line, so the phone call involved a fair amount of guess work on my part! Anyway, upshot of it all was that I needed Richs' phone with me so he could diagnose the problem. Of course, Rich has taken it to school so that's that until tonight.
Next it was tea making. I am working this afternoon and so prepared a lasagne for everyone so I don't have to cook when I get home. No mushrooms. Not a big deal, but we eat a lot of mushrooms in our house and it just doesn't seem right without them! Ok, mince prepared, lasagne sheets softening in the simmering water, lets get on with the sauce. First "oh bugger" was too much flour, so instead of a paste I had a lot of lumps. Should have rectified it but carried on, got lots to do this morning. Add the milk, of which I have now run out! Bugger, still lumpy. Look for my whisk. Now, I need to ask you, have you pinched/hidden my whisk? I can't make a roux without it. Ended up using a fork, which took the bottom of the supposedly non stick pan off so now there are black bits in the sauce. That was the second "oh bugger" moment. I then left the sauce to thicken whilst I sorted out the sheets of lasagne into the dish. They were hot! "Oh bugger and ouch!" Drain the water, and half the sheets into the sink. Big sighs all round. Ok, sheets into the dish, mince on top, more sheets. Then I remember the cheese sauce thickening, or burning.
Some days I am not safe to be let loose. Anyway, the lasagne is prepared, in the oven on the self timer, and hopefully Becky will get it out and onto the plates safely. Forgot to tell the children I am working so have texted them so they don't wonder where I am. As long as there is food left for them they won't miss me lol.
I have walked the dog and done two loads of washing. Am I crazy? I also need to pop to Yate to get more milk so I can have a cuppa and sort out Dads lunch and tea before I go to work. I hope that by this afternoon I will be more capable and the rest of the day runs smoothly. Of course, I could spill mouthwash over the patients, drop instruments on the floor, take someones tonsils out and fall off the stool. The list is endless. Now I have myself worried. Just thankful the patients can't read this blog. Ha ha!
Sunday 18 September 2011
wee beasties and fantasies
As we all know, I am feeling rather crappy at the moment. I usually have a packet of painkillers handy by my bed to take in the night if needed, but have run out. Hence, 3am this morning, I was to be found downstairs raiding the medicine cupboard. I turned on the kitchen light, to be confronted by a mouse on the draining board. We have had mice ever since we moved in. Rosie (the cat!) manages to keep the population down for us, but is showing no interest this year. Hmmm, not pulling her weight now she's 17!
What is it with mice? They have this look. It sort of mesmerises you and glues you to the spot, and then the gooey, aren't I sweet look hits them! I has to be the size of their eyes in comparison to their body. *sigh* Anyway, it works with me every time, and I told it to get back under the sink and off my draining board. Mice, along with spiders it seems, don't understand English. Flippin thing took to hiding behind my CD player instead. I made a mental note to get the kitchen spray out in the morning and clean all the surfaces, took my tablets and headed off to bed. Maybe tonight I will lock the cat in the kitchen and leave the cupboard door under the sink open!
That wasn't my only encounter with the wild creature world yesterday. Many of you will know of the spider in the shower, well now meet its cousin, spider in the bathroom! Rich called me to say he had a wasp in his room and could I get it out for him. (Just call me pest control). Having duly captured and deposited the sleepy wasp out of the window I needed a wee. Sorry, but it happens!! Went into the main bathroom, sat down, minding my own business (no pun intended!) when for some reason I looked up. Oh, I wish I hadn't. There on the wall was a spider, ambling along from the bath end of the room to the door. I don't mind spiders, but I am not really keen being held hostage. Not alot I could do but hope that it stayed just below the ceiling and kept moving! Typically it stopped by the light pull, but I ignored it, just going a wee bit faster as I exited.
All this talk reminds me I need to treat the cat for fleas. She hasn't got them, but its the regular treatment time. The pets need a calendar of their own to remind me when they need worming, de-fleaing etc. I used to get a reminder from the vet, but since buying the various remedies online this has obviously stopped. Still, so much money saved :o)
Right, thats it for now. Have just got time to do the ironing before going to Dads. I am sure I was swapped at birth you know! Surely I belong in a very rich family setting where life runs smoothly, money is no problem, housework is done by servants etc etc. No? It is a fantasy, just like the one where a rich man waits for me at the checkout at Tesco and offers to pay my shopping bill each week! Oh, and the one when I occasionally browse the jewellers window and someone says I can have any ring I want! How sad am I lol. Notice how all these fantasies involve money and nothing else. Oh god, maybe I am getting old after all ...............
What is it with mice? They have this look. It sort of mesmerises you and glues you to the spot, and then the gooey, aren't I sweet look hits them! I has to be the size of their eyes in comparison to their body. *sigh* Anyway, it works with me every time, and I told it to get back under the sink and off my draining board. Mice, along with spiders it seems, don't understand English. Flippin thing took to hiding behind my CD player instead. I made a mental note to get the kitchen spray out in the morning and clean all the surfaces, took my tablets and headed off to bed. Maybe tonight I will lock the cat in the kitchen and leave the cupboard door under the sink open!
That wasn't my only encounter with the wild creature world yesterday. Many of you will know of the spider in the shower, well now meet its cousin, spider in the bathroom! Rich called me to say he had a wasp in his room and could I get it out for him. (Just call me pest control). Having duly captured and deposited the sleepy wasp out of the window I needed a wee. Sorry, but it happens!! Went into the main bathroom, sat down, minding my own business (no pun intended!) when for some reason I looked up. Oh, I wish I hadn't. There on the wall was a spider, ambling along from the bath end of the room to the door. I don't mind spiders, but I am not really keen being held hostage. Not alot I could do but hope that it stayed just below the ceiling and kept moving! Typically it stopped by the light pull, but I ignored it, just going a wee bit faster as I exited.
All this talk reminds me I need to treat the cat for fleas. She hasn't got them, but its the regular treatment time. The pets need a calendar of their own to remind me when they need worming, de-fleaing etc. I used to get a reminder from the vet, but since buying the various remedies online this has obviously stopped. Still, so much money saved :o)
Right, thats it for now. Have just got time to do the ironing before going to Dads. I am sure I was swapped at birth you know! Surely I belong in a very rich family setting where life runs smoothly, money is no problem, housework is done by servants etc etc. No? It is a fantasy, just like the one where a rich man waits for me at the checkout at Tesco and offers to pay my shopping bill each week! Oh, and the one when I occasionally browse the jewellers window and someone says I can have any ring I want! How sad am I lol. Notice how all these fantasies involve money and nothing else. Oh god, maybe I am getting old after all ...............
Friday 16 September 2011
Tubthumping!
Feeling incredibly low today. At least the shopping is done, I am sure Morrisons is cheaper than Tesco, but having said that the fridge still looks bare. Probably because it is! I know the children will come home and say there is nothing to eat, and they would be correct in their view. Sadly, telling them to have toast or cheese and crackers doesn't quite come up to standard.
I think I am down because of being so tired. I want to get off the treadmill of life for a bit and chill. I suppose if sleeping when I get a spare moment counts as chilling then I have got my wish! I know the crash is coming and as I have said before, I know I will get back up. It brings to mind a song . Lets see if this link works!
<iframe width="420" height="315" src="http://www.youtube.com/embed/kS-zK1S5Dws" frameborder="0" allowfullscreen></iframe>
Or try this link maybe?
http://youtu.be/kS-zK1S5Dws
Anyway, its Tubthumping by Chumbawamba. It just keeps popping into my head so there must be a reason for it!
I also have to say goodbye to another one of my toyboys! (Rach and I have decided that because of Dads illness Josh will go to nursery on Wednesdays. Sad, but its for the best.) The other toyboy I have said goodbye to is Rich, not my Rich, Tesco Rich. Along with Ed, Rich has made Tesco a slightly better place to shop. Despite the fact that he can be too sarcastic for his own good sometimes, he makes me smile and last week he even managed to cheer me up for a bit! Rich, the bread aisle will never be the same, but enjoy Uni!
Luckily Ed is staying on, but once the new store opens I fear everyone will be lost within its bowels, never to be seen or heard again!! Maybe they will install satnav on the trolleys!!
Anyway, I need to go. Its getting to be the time I go to Dads to sort out some lunch for him. ttfn x
I think I am down because of being so tired. I want to get off the treadmill of life for a bit and chill. I suppose if sleeping when I get a spare moment counts as chilling then I have got my wish! I know the crash is coming and as I have said before, I know I will get back up. It brings to mind a song . Lets see if this link works!
<iframe width="420" height="315" src="http://www.youtube.com/embed/kS-zK1S5Dws" frameborder="0" allowfullscreen></iframe>
Or try this link maybe?
http://youtu.be/kS-zK1S5Dws
Anyway, its Tubthumping by Chumbawamba. It just keeps popping into my head so there must be a reason for it!
I also have to say goodbye to another one of my toyboys! (Rach and I have decided that because of Dads illness Josh will go to nursery on Wednesdays. Sad, but its for the best.) The other toyboy I have said goodbye to is Rich, not my Rich, Tesco Rich. Along with Ed, Rich has made Tesco a slightly better place to shop. Despite the fact that he can be too sarcastic for his own good sometimes, he makes me smile and last week he even managed to cheer me up for a bit! Rich, the bread aisle will never be the same, but enjoy Uni!
Luckily Ed is staying on, but once the new store opens I fear everyone will be lost within its bowels, never to be seen or heard again!! Maybe they will install satnav on the trolleys!!
Anyway, I need to go. Its getting to be the time I go to Dads to sort out some lunch for him. ttfn x
Thursday 15 September 2011
Frustration and tears!
Saturday: Matthew arrives at Dads to cook his breakfast. Dad asleep in chair downstairs, sausages cooking in frying pan!!
Sunday: I go to do Dads breakfast. Arrive to find Dad asleep on chair in kitchen doorway with fishfingers burning in frying pan! Dish up, talk to Dad about cooking breakfast, remind him about timetable I made for him showing who is doing what and when. Change his sheets and tell him I will sort out with Erica for her to change them twice a week and I will wash and dry them. Dry him after his shower and snuggle him in bed. Struggling big time with M.E :o(
Monday: Matthew arrives at Dads to cook his lunch. Dad already trying to cook it! Trying to poach an egg but put it in microwave for 10 mins. I go and sort out his tea. Remind him again about timetable.
Tuesday: Sarah cooks Dads lunch as I am working. There is a bag of wet washing for me. Erica has changed his sheets at Dads request. Arggghhhhhh! I sort out tea and remind him that I said I would sort out with Erica the bed change. He looked so sad I couldn't be angry. He said he is so confused that maybe he had better just leave it all to me.
Wednesday: Reasonably good day, no confusions!
Thursday : Not a good day. Dad not feeling too good so I take his lunch upstairs to him. We chat about various things, including the timetable and add a visitor for Friday. I tell Dad that I will be back later to sort out his tea, which I prepared at lunchtime to save me time later on. Remind him, quite forcibly not to leave his bed. Pop to Tesco to buy some potato salad to go with his tea on the way to his house. Get a phone call from Matthew to say that Dad has phoned to say he has had his tea and has gone back to bed. Now this for me was just one step too much! Hence I was to be seen publicly crying in Tesco. Not a good look chaps.
I am such an emotional person and I am very tired at the moment. The two do not sit well together. The frustration is just too much. I don't scream, I cry!! Go to Dads and remind him I was coming to sort out his tea. He said that he woke up and looked at the clock and it was 17.01 which he mistook as being 7 o'clock, so he found his tea in the fridge and had it.
What do I do? Nothing. Its not his fault he is getting confused, and I am getting angry. I am going to look out for a big clock to put in his bedroom. Matthew has suggested a white board instead of the paper timetable and we write on it each day. How has it come to this? I have read the internet articles on liver failure, and I know that his confusion can be contributed to that. It can also be because he is soo tired all the time. Who knows? He has a consultants appointment at the end of the month. If he is still not well enough to go to it Matthew and I will go alone. Maybe it will be easier to ask questions without Dad there. Hopefully there will be some answers ............................
Sunday: I go to do Dads breakfast. Arrive to find Dad asleep on chair in kitchen doorway with fishfingers burning in frying pan! Dish up, talk to Dad about cooking breakfast, remind him about timetable I made for him showing who is doing what and when. Change his sheets and tell him I will sort out with Erica for her to change them twice a week and I will wash and dry them. Dry him after his shower and snuggle him in bed. Struggling big time with M.E :o(
Monday: Matthew arrives at Dads to cook his lunch. Dad already trying to cook it! Trying to poach an egg but put it in microwave for 10 mins. I go and sort out his tea. Remind him again about timetable.
Tuesday: Sarah cooks Dads lunch as I am working. There is a bag of wet washing for me. Erica has changed his sheets at Dads request. Arggghhhhhh! I sort out tea and remind him that I said I would sort out with Erica the bed change. He looked so sad I couldn't be angry. He said he is so confused that maybe he had better just leave it all to me.
Wednesday: Reasonably good day, no confusions!
Thursday : Not a good day. Dad not feeling too good so I take his lunch upstairs to him. We chat about various things, including the timetable and add a visitor for Friday. I tell Dad that I will be back later to sort out his tea, which I prepared at lunchtime to save me time later on. Remind him, quite forcibly not to leave his bed. Pop to Tesco to buy some potato salad to go with his tea on the way to his house. Get a phone call from Matthew to say that Dad has phoned to say he has had his tea and has gone back to bed. Now this for me was just one step too much! Hence I was to be seen publicly crying in Tesco. Not a good look chaps.
I am such an emotional person and I am very tired at the moment. The two do not sit well together. The frustration is just too much. I don't scream, I cry!! Go to Dads and remind him I was coming to sort out his tea. He said that he woke up and looked at the clock and it was 17.01 which he mistook as being 7 o'clock, so he found his tea in the fridge and had it.
What do I do? Nothing. Its not his fault he is getting confused, and I am getting angry. I am going to look out for a big clock to put in his bedroom. Matthew has suggested a white board instead of the paper timetable and we write on it each day. How has it come to this? I have read the internet articles on liver failure, and I know that his confusion can be contributed to that. It can also be because he is soo tired all the time. Who knows? He has a consultants appointment at the end of the month. If he is still not well enough to go to it Matthew and I will go alone. Maybe it will be easier to ask questions without Dad there. Hopefully there will be some answers ............................
Saturday 10 September 2011
finally found 10 mins!
Its been a long time since I had the spare time to sit and blog. To be honest, even if I had time I don't think I would have put my thoughts down. It has been a rollercoaster for my emotions, usually depending on how my Dad has appeared each day I go to see him, and its usually been on the downward spiral. If Dad had an up day and managed to go into his study for his meals I would be elated, only to crash down when he couldn't manage it the following day. The trouble is, I am a very emotional person and feed off my surroundings, fantastic at a gig but not so good as a nurse!! I am also sooo tired. Have managed to keep the M.E at bay with painkillers and crashing out when I can, but its getting harder.
The latest news on Dad is that for the past two days he has managed to come downstairs for an hour or two and sit in the chair. He is still being sick, with no apparent rhyme or reason as to when or why, some days he can eat proper food and then has to revert to mush. The last lot of blood tests showed that his kidney function is up slightly, but his liver function is down. The GP warned that any illness, cold, bug etc would knock him badly and it would impact on his liver function. Basically, the prognosis at the moment is that his liver is failing and he will have good days and bad, and we have to adjust accordingly. It is not due to old age but I guess at 82 something was bound to get him, especially when you bear in mind he has countless other things wrong with him!
I have struggled at times, crashed, picked myself up and carried on. The main thing is that I have missed my friends. The times I would normally have been able to see them I have been at Dads, and by the time I get home and cook tea for hubby and the children, cleared up etc all I am fit for is collapse. Rach has rectified this over the last few days when I outpoured to her and has popped in at weird and wonderful times, taking home my ironing and bringing it back a day later. I love that woman :o)
I have managed to get over and visit the duckies. Wow, so many of them now and all of them slightly different from each other. A lot of partner swapping been going on by the looks of things! It seems to be the hungry season and they tend to jump out of the pond now in their haste for food. I have taken to scattering their corn around the bench and just sitting and watching with a stupid grin on my face. So much noise too, I just love it. I wish I could just sit there all day.
I should mention that Matthew is helping me out, doing Dad his breakfast, and lunch on the days I work, and doing what he can at home. The children have been fantastic, considering they have virtually been ignored for the last 6 weeks or so, they haven't moaned or complained, apart from the fact they don't get their tea now until 7.30 which causes a few grumbles. Can't say I blame them, I usually forget to feed myself at lunch time so tea time is a long way away! Specks hasn't complained that his walks have got shorter and more erratic, but maybe the fact he rushes to the door each time I go out is an indicator in itself! No, the children won't take him out because they don't like to pick up his poo!
Right, I guess I should stop there and get the washing on, clean out the piggies and maybe go mad and have a cuppa before heading out with Specks. ttfn x
The latest news on Dad is that for the past two days he has managed to come downstairs for an hour or two and sit in the chair. He is still being sick, with no apparent rhyme or reason as to when or why, some days he can eat proper food and then has to revert to mush. The last lot of blood tests showed that his kidney function is up slightly, but his liver function is down. The GP warned that any illness, cold, bug etc would knock him badly and it would impact on his liver function. Basically, the prognosis at the moment is that his liver is failing and he will have good days and bad, and we have to adjust accordingly. It is not due to old age but I guess at 82 something was bound to get him, especially when you bear in mind he has countless other things wrong with him!
I have struggled at times, crashed, picked myself up and carried on. The main thing is that I have missed my friends. The times I would normally have been able to see them I have been at Dads, and by the time I get home and cook tea for hubby and the children, cleared up etc all I am fit for is collapse. Rach has rectified this over the last few days when I outpoured to her and has popped in at weird and wonderful times, taking home my ironing and bringing it back a day later. I love that woman :o)
I have managed to get over and visit the duckies. Wow, so many of them now and all of them slightly different from each other. A lot of partner swapping been going on by the looks of things! It seems to be the hungry season and they tend to jump out of the pond now in their haste for food. I have taken to scattering their corn around the bench and just sitting and watching with a stupid grin on my face. So much noise too, I just love it. I wish I could just sit there all day.
I should mention that Matthew is helping me out, doing Dad his breakfast, and lunch on the days I work, and doing what he can at home. The children have been fantastic, considering they have virtually been ignored for the last 6 weeks or so, they haven't moaned or complained, apart from the fact they don't get their tea now until 7.30 which causes a few grumbles. Can't say I blame them, I usually forget to feed myself at lunch time so tea time is a long way away! Specks hasn't complained that his walks have got shorter and more erratic, but maybe the fact he rushes to the door each time I go out is an indicator in itself! No, the children won't take him out because they don't like to pick up his poo!
Right, I guess I should stop there and get the washing on, clean out the piggies and maybe go mad and have a cuppa before heading out with Specks. ttfn x
Thursday 1 September 2011
on the edge
I am so unbelievably knackered. I am running on empty, on the verge of tears all the time and my brain is whirring round, but empty.
Dad came home a week ago and is bedbound. His blood pressure is still low, despite stopping two of the meds that can drop it. Still no diagnosis as to what is wrong with him and I feel like I am bumbling around in the dark. Not going to write any more cos I am multi tasking and preparing our tea whilst I have half an hour spare. Don't think I am going to last much longer before I collapse in a heap. Of course, I will pick myself up again and carry on because there is no other choice.
Oh to go to bed and be able to sleep properly, that would help.
Dad came home a week ago and is bedbound. His blood pressure is still low, despite stopping two of the meds that can drop it. Still no diagnosis as to what is wrong with him and I feel like I am bumbling around in the dark. Not going to write any more cos I am multi tasking and preparing our tea whilst I have half an hour spare. Don't think I am going to last much longer before I collapse in a heap. Of course, I will pick myself up again and carry on because there is no other choice.
Oh to go to bed and be able to sleep properly, that would help.
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