I was wrong yesterday, it's half-past dark AM! Anyway, my last sleep is done, so it's time for the last day's work. I'm still going to put in as much effort as I have been these last three weeks; I might as well make the most of it! Well, on to the plan!
7:30 - Breakfast! (cold pizza!)
9:00 - Stretch
10:00 - Physio
12:00 - Lunch
15:00 - Swimming
I'm gonna miss this hospital, to be honest, even though at night it's scary as hell. My duvet and pillow really helped, it was nice to have some 'home comforts' I think I managed to sleep every night!
Thursday, 23 December 2010
Wednesday, 22 December 2010
3 Month Goals!
While I'm nomming on this lovely meat feast pizza from That Company Who Shall Not Be Named, I thought I would write about my day in detail.
As I said yesterday about the porters, they finally turned up at about 8:30 this morning, only 18 hours late! Well anyway, with a renewed sense of "omg, sausages wrapped in bacon" cheer, I did my stretches while my physio went and gave a HUGE bollocking to the porters for yesterday. Apparently they didn't pick me up because they were only told an hour in advance and because they only had a two hour gap...
Anyway, stretching was the same as always, then my "supervised exercises" (torture physio as I call it) and then I had an OT session, which was in the bathroom! My OT showed me a bath thing, which looks fantastic! I can have one of my own too, so long as I have the measurements of my bath! So I asked mum to get them for me earlier!
When talking with my OT, she also commented that I'm very similar to her son who has Asperger's Syndrome. She said that everything I say, the way I say it and the things I do are all very "Asperger-y" and asked me if I had ever been tested for it. I haven't, and I'd never really considered it before. When I got back to the ward at lunch, I did a bit of reading online about it (naughty, I know...) and it sounds like me! Explains my quirkiness, I guess! It's not a 'disorder' or a 'disability' it's just a difference in personality, from my point of view, and it's quite common.
My (technically) third physio session of the day was actually my 3 month goals, which were things I want to be able to do within 3 months from leaving. My goals, I hope, are obtainable; when I get chance, I'll put them here and I'll try to keep this updated to show my progress. One of them, I've already managed to do, amazingly!
The one goal I've managed to achieve, is to start watercolour painting. I've bought nearly all of my equipment, including reservoir brushes, which are the cleverest thing I have ever seen! They hold the water in the handle and have a cap like a pen, so when you're moving about, you don't need to take a water pot for your brushes! How great is that? I bought a set of 24 watercolour pencils, 3 reservoir brushes (a set, fine, med, broad) and a spiral watercolour 130gsm paper pad! So I can't wait! It should be with me early January!
Lunch today was a Pot Noodle, as I do not trust the hospital food. For example, the pineapple juice is GREY; it also tastes very syrupy and strange... Then after lunch I nipped to the hospital restaurant next door and bought my dinner, a pre-packed BLT, a pack of cheese and onion McCoys, a bar of Galaxy and two bottles of Mountain Dew (one for Sports and Recreation later) and stuck everything on the window sill to chill!
Sports and Recreation was quite fun, I'm pretty good at badminton as long as I don't have to move about (as I have decent hand/eye co-ordination) so that was fun. Then we moved on to Table-Tennis, which was a nightmare, as we did doubles, boys vs girls and my doubles partner was incredibly aggressive (deliberately, to make the physios work really hard picking the balls up!) he got told off in the end! Quite naughty behaviour for a 38 year old policeman! It was absolutely hilarious, though!
Well, I've eaten about a third of my pizza and it's 11:40 now, so I think it might be sleepy time! (maybe...) Back tomorrow morning at quarter-past dark AM, with the daily plan, as usual!
As I said yesterday about the porters, they finally turned up at about 8:30 this morning, only 18 hours late! Well anyway, with a renewed sense of "omg, sausages wrapped in bacon" cheer, I did my stretches while my physio went and gave a HUGE bollocking to the porters for yesterday. Apparently they didn't pick me up because they were only told an hour in advance and because they only had a two hour gap...
Anyway, stretching was the same as always, then my "supervised exercises" (torture physio as I call it) and then I had an OT session, which was in the bathroom! My OT showed me a bath thing, which looks fantastic! I can have one of my own too, so long as I have the measurements of my bath! So I asked mum to get them for me earlier!
When talking with my OT, she also commented that I'm very similar to her son who has Asperger's Syndrome. She said that everything I say, the way I say it and the things I do are all very "Asperger-y" and asked me if I had ever been tested for it. I haven't, and I'd never really considered it before. When I got back to the ward at lunch, I did a bit of reading online about it (naughty, I know...) and it sounds like me! Explains my quirkiness, I guess! It's not a 'disorder' or a 'disability' it's just a difference in personality, from my point of view, and it's quite common.
My (technically) third physio session of the day was actually my 3 month goals, which were things I want to be able to do within 3 months from leaving. My goals, I hope, are obtainable; when I get chance, I'll put them here and I'll try to keep this updated to show my progress. One of them, I've already managed to do, amazingly!
The one goal I've managed to achieve, is to start watercolour painting. I've bought nearly all of my equipment, including reservoir brushes, which are the cleverest thing I have ever seen! They hold the water in the handle and have a cap like a pen, so when you're moving about, you don't need to take a water pot for your brushes! How great is that? I bought a set of 24 watercolour pencils, 3 reservoir brushes (a set, fine, med, broad) and a spiral watercolour 130gsm paper pad! So I can't wait! It should be with me early January!
Lunch today was a Pot Noodle, as I do not trust the hospital food. For example, the pineapple juice is GREY; it also tastes very syrupy and strange... Then after lunch I nipped to the hospital restaurant next door and bought my dinner, a pre-packed BLT, a pack of cheese and onion McCoys, a bar of Galaxy and two bottles of Mountain Dew (one for Sports and Recreation later) and stuck everything on the window sill to chill!
Sports and Recreation was quite fun, I'm pretty good at badminton as long as I don't have to move about (as I have decent hand/eye co-ordination) so that was fun. Then we moved on to Table-Tennis, which was a nightmare, as we did doubles, boys vs girls and my doubles partner was incredibly aggressive (deliberately, to make the physios work really hard picking the balls up!) he got told off in the end! Quite naughty behaviour for a 38 year old policeman! It was absolutely hilarious, though!
Well, I've eaten about a third of my pizza and it's 11:40 now, so I think it might be sleepy time! (maybe...) Back tomorrow morning at quarter-past dark AM, with the daily plan, as usual!
Week 3, Day 3
One more day! It's weird, because this rehab has been really good, however I want to go home! I'm really looking forward to my Christmas dinner, sausages wrapped in bacon, mmm!
Today's plan is:
7:30 - Breakfast!
9:00 - Stretches
9:30 - Physio
10:30 - Occupational Therapy
11:15 - Physio
12:00 - Lunch
15:00 - Sports and Recreation
17:00 - Dinner
Today's plan is:
7:30 - Breakfast!
9:00 - Stretches
9:30 - Physio
10:30 - Occupational Therapy
11:15 - Physio
12:00 - Lunch
15:00 - Sports and Recreation
17:00 - Dinner
Tuesday, 21 December 2010
If I Can't Get There...
So, it's 9:30pm now and my physiotherapy was at 2:30pm. I have to have a porter to take me to the physio department, well, I'm still waiting... The nurses called the porters at 2:25, then at 3, but nothing. I'm a bit pissed about it, because I want to do the physio, it's part of why I'm here. I want to learn my limits and get over the fear I have of injuring myself, but how can I do that if I can't get to the physio gym?! Also earlier, my Arts and crafts session was cancelled as the OT who takes my sessions was ill and there was no-one who could covet for her.
I did get some good news today, however. I met with the ward doctor and we talked over Marfans as well as my family history. The doctor said that after reviewing everything (because of my worries and want for further investigations), it turns out that it's pretty much certain that I don't have Marfans. Which for me is such a relief, because Ehlers-Danlos isn't life-threatening. We also talked about my heart and work worries, which gave me a lot of reassurance. Although my heart condition might be worrying, it's actually normal for "POTS" sufferers, as the heart sometimes can't keep up with itself!
Well, an exciting day today. Hopefully it'll be a bit more relaxed tomorrow.
I did get some good news today, however. I met with the ward doctor and we talked over Marfans as well as my family history. The doctor said that after reviewing everything (because of my worries and want for further investigations), it turns out that it's pretty much certain that I don't have Marfans. Which for me is such a relief, because Ehlers-Danlos isn't life-threatening. We also talked about my heart and work worries, which gave me a lot of reassurance. Although my heart condition might be worrying, it's actually normal for "POTS" sufferers, as the heart sometimes can't keep up with itself!
Well, an exciting day today. Hopefully it'll be a bit more relaxed tomorrow.
Day 235098.8
Snowed in for weeks, haven't seen daylight for days. Nurses have gone crazy and started a strange cult. Help us, I think they're becoming cannibalistic!
Anyway, today it's a nice, light, relaxing day.
7:30 - Breakfast
9:00 - Stretches
9:30 - Arts and Crafts
11:00 - Maintaining Change Talk
12:00 - Lunch
14:30 - Physio
17:00 - Dinner!
Anyway, today it's a nice, light, relaxing day.
7:30 - Breakfast
9:00 - Stretches
9:30 - Arts and Crafts
11:00 - Maintaining Change Talk
12:00 - Lunch
14:30 - Physio
17:00 - Dinner!
Monday, 20 December 2010
Air Putty!
I had a surprise OT session today, where I did a peg test (12 seconds each hand!) My OT said that she hadn't seen anyone pick up more than one peg at once; I thought it was logical... But anyway, to sort out the dexterity of my hands/fingers, I've been given a pot of "Air Putty" which is really soft... well, putty! I'm supposed to put glass beads/coins in it and pick them out to improve my fingers, but it's more fun to fiddle with!
Other than the putty, physio today was interesting. I was being taught to walk properly, which is actually really difficult. Stepping on a box and stepping off a certain way while keeping upright and making sure to put even weight on each leg is harder than it looks/sounds. Even now, like 4 hours later, my thighs and my knees really ache, they feel awful, but if this helps me then fine.
I'm really tired at the moment, have my macbook setup so I can watch TV on my iPad (over a makeshift wireless network) so all is good at the moment (although there's nothing on...) I might go and make myself a snack thing in an hour or so!
Other than the putty, physio today was interesting. I was being taught to walk properly, which is actually really difficult. Stepping on a box and stepping off a certain way while keeping upright and making sure to put even weight on each leg is harder than it looks/sounds. Even now, like 4 hours later, my thighs and my knees really ache, they feel awful, but if this helps me then fine.
I'm really tired at the moment, have my macbook setup so I can watch TV on my iPad (over a makeshift wireless network) so all is good at the moment (although there's nothing on...) I might go and make myself a snack thing in an hour or so!
Week 3, Day 1!
The journey down wasn't too bad this morning, there was a huge accident on the A1 quite a way up, so it was very clear for us this morning. Unfortunate for the people in the accident, but made our journey a lot smoother.
Today's plan is quite simple (thank god!)
10:00 - Weekend Review
10:30 - Anatomy and Healing
12:00 - Lunch
13:30 - Arts and Crafts Cancelled!
14:00 - Physio
15:00 - Arts and Crafts
17:00 - Dinner!
The bunch in the ward this week are a bit strange. One guy (Mac user) kept trying to one up absolutely everything this morning (as I use a Mac). I can see him getting really annoying...
Anyway, break now, physio later!
Today's plan is quite simple (thank god!)
10:00 - Weekend Review
10:30 - Anatomy and Healing
12:00 - Lunch
14:00 - Physio
15:00 - Arts and Crafts
17:00 - Dinner!
The bunch in the ward this week are a bit strange. One guy (Mac user) kept trying to one up absolutely everything this morning (as I use a Mac). I can see him getting really annoying...
Anyway, break now, physio later!
Friday, 17 December 2010
Alone in the Ward (Week 2 Day 5)
Well, it's nearly home time now and I'm looking forward to being in my own home, with decent food and my own bed and a decentish internet connection. This week has been tough and I still feel rough today, but I'm constantly told "there will be benefits! There will be benefits!" so we shall see!
Today's sessions are all done and I'm the only one on the male side of the Rehab Ward! I'll list my day as normal, just to keep with the program.
9:00 - Relaxation Techniques (complete with cheesy music!)
9:30 - Discussion Group
10:00 - DIY Stretches (or getting picked up by the porters 30 minutes early!)
10:30 - Occupational Therapy Workshop (Watercolour painting, which went over the allowed time! Tsk!)
12:00 - Lunch
It's snowing outside, the snow itself is thin, but there's a lot of it coming down at the moment. The sky looks incredibly full of it as well, so I expect it to get much, much worse!
Back to the OT Workshop earlier, I got to have a go with the watercolour pencils and I really enjoyed it! Mainly because they had a very strange water brush that you filled up (so it was self wetting!) I really want to get one of them and start watercolour (with pencils) because I found it really relaxing and quite easy to do. So maybe I'll look into getting some once I have finished my rehab. It'll be a nice hobby to get into.
Although I feel like crap today (yes, still!), I feel much better mentally and that helps. I love the snow and I love the cold and it's looking really pretty outside now so it's cheering me up a bit! (plus it's nearly lunchtime and soon I get to go home!)
As usual, this will be my last blog post for the week (although, I could blog about my weekend goals and when I do my exercises and stuff like that; we'll see!)
Today's sessions are all done and I'm the only one on the male side of the Rehab Ward! I'll list my day as normal, just to keep with the program.
9:00 - Relaxation Techniques (complete with cheesy music!)
9:30 - Discussion Group
10:00 - DIY Stretches (or getting picked up by the porters 30 minutes early!)
10:30 - Occupational Therapy Workshop (Watercolour painting, which went over the allowed time! Tsk!)
12:00 - Lunch
It's snowing outside, the snow itself is thin, but there's a lot of it coming down at the moment. The sky looks incredibly full of it as well, so I expect it to get much, much worse!
Back to the OT Workshop earlier, I got to have a go with the watercolour pencils and I really enjoyed it! Mainly because they had a very strange water brush that you filled up (so it was self wetting!) I really want to get one of them and start watercolour (with pencils) because I found it really relaxing and quite easy to do. So maybe I'll look into getting some once I have finished my rehab. It'll be a nice hobby to get into.
Although I feel like crap today (yes, still!), I feel much better mentally and that helps. I love the snow and I love the cold and it's looking really pretty outside now so it's cheering me up a bit! (plus it's nearly lunchtime and soon I get to go home!)
As usual, this will be my last blog post for the week (although, I could blog about my weekend goals and when I do my exercises and stuff like that; we'll see!)
Thursday, 16 December 2010
At the End of the Day
Finally, I made it through The Day from Hell™ (and without 70+ year old wang to ruin the start of my day, unlike yesterday; shut your curtains for fuck's sake!) Annoyingly though, I've had tachycardia and random arrhythmia all day. Having your heart want to beat itself out of your chest (kinda like in Alien) is very tiring. Still a pain when being told to push and push and push by the physios, though.
The highlight of The Day from Hell™ was definitely the Hypermobility talk, as I learnt loads. Basically, my condition is actually Marfans, but I have Ehlers-Danlos because of the Marfans. Essentially it means that the proteins that are affected in my genes include more than just one type of collagen, it also includes a few other types of collagen, fibrillin and elastin as well. Basically, it's suck.
So I essentially have my hierarchy of disorders now, which makes me feel a bit better. It's also common for people with genetic physical issues to have genetic mental disorders too, which explains my bipolar too. My genes are a combination of sheer bad luck and being something aberrantly evil in a past life, I guess. It sucks though, especially on days like today, I want an off switch than had no way of being turned back on. Maybe I could get one for Christmas?
Swimming was good today, I actually did some water exercises rather than swimming (I still did a bit of swimming) and although it was really tiring (even more so than I have been all day), I found it really good. It's something I really want to continue with once I finish. I really, really want to get back into swimming again. I might make it one of my "Three Month Goals" to get back into it, as well as to develop my gym ball exercises (as I have ordered a purple one!) to build my core stability!
I have decided that I want to learn how to give myself a decent day-to-day life and I feel that although this course is bloody hard, it's helped me to do that. It's also made me realise that working unfortunately isn't for me. I need to focus on myself and although I can't be cured, I can at least try to keep it at bay. Keeping Marfans and EDS at bay however will be my full time job. I'm not sure how to feel about this, but it's what I need to do.
Tomorrow I get to go home for the weekend! It'll be a short day of singing hymns and some other stuff to prep us, so we can return fresh on Monday morning. My weekend goals are pretty good this time round, I've already done one of them though! (which was to look into getting a gym ball, shhhh!)
Hopefully the supposedly chaotic amount of snow we're supposed to get tonight won't hinder my getting home (or give dad issues driving down here to pick me up tomorrow afternoon), but at least it looks nice!
The highlight of The Day from Hell™ was definitely the Hypermobility talk, as I learnt loads. Basically, my condition is actually Marfans, but I have Ehlers-Danlos because of the Marfans. Essentially it means that the proteins that are affected in my genes include more than just one type of collagen, it also includes a few other types of collagen, fibrillin and elastin as well. Basically, it's suck.
So I essentially have my hierarchy of disorders now, which makes me feel a bit better. It's also common for people with genetic physical issues to have genetic mental disorders too, which explains my bipolar too. My genes are a combination of sheer bad luck and being something aberrantly evil in a past life, I guess. It sucks though, especially on days like today, I want an off switch than had no way of being turned back on. Maybe I could get one for Christmas?
Swimming was good today, I actually did some water exercises rather than swimming (I still did a bit of swimming) and although it was really tiring (even more so than I have been all day), I found it really good. It's something I really want to continue with once I finish. I really, really want to get back into swimming again. I might make it one of my "Three Month Goals" to get back into it, as well as to develop my gym ball exercises (as I have ordered a purple one!) to build my core stability!
I have decided that I want to learn how to give myself a decent day-to-day life and I feel that although this course is bloody hard, it's helped me to do that. It's also made me realise that working unfortunately isn't for me. I need to focus on myself and although I can't be cured, I can at least try to keep it at bay. Keeping Marfans and EDS at bay however will be my full time job. I'm not sure how to feel about this, but it's what I need to do.
Tomorrow I get to go home for the weekend! It'll be a short day of singing hymns and some other stuff to prep us, so we can return fresh on Monday morning. My weekend goals are pretty good this time round, I've already done one of them though! (which was to look into getting a gym ball, shhhh!)
Hopefully the supposedly chaotic amount of snow we're supposed to get tonight won't hinder my getting home (or give dad issues driving down here to pick me up tomorrow afternoon), but at least it looks nice!
And So, the Day from Hell
It's thursday and about 20 minutes ago I was woken up by insanely bright lights and nurses asking me to take my medication (even though I don't have fresh water, what?). I am not looking forward to today, but at least the old man opposite hasn't decided to get dressed in "full view" like he did yesterday, yet.
I have not been looking forward to today as it's constant and unrelenting, but anyway, the plan!
7:00 - Breakfast
8:30 - Physio
9:00 - Stretches
9:30 - Hypermobility "Education session"
11:00 - "Goal Setting"
12:00 - Lunch
13:00 - "Work Support"
14:00 - Swimming
16:30 - Physio
17:00 - Dinner
The day starts and ends with physio, I don't know where this "Hypermobility Education Session" is being held and other than that, I have no breaks. How am I supposed to pace myself when my day has no breaks? How?! This is what frustrates me, I have to take in all this information and do all these things one after the other. I feel like crap and this week I'm feeling 10 times worse than I did last week. Also, I can't reply to comments, because apparently I'm not signed in... What the heck.
I have not been looking forward to today as it's constant and unrelenting, but anyway, the plan!
7:00 - Breakfast
8:30 - Physio
9:00 - Stretches
9:30 - Hypermobility "Education session"
11:00 - "Goal Setting"
12:00 - Lunch
13:00 - "Work Support"
14:00 - Swimming
16:30 - Physio
17:00 - Dinner
The day starts and ends with physio, I don't know where this "Hypermobility Education Session" is being held and other than that, I have no breaks. How am I supposed to pace myself when my day has no breaks? How?! This is what frustrates me, I have to take in all this information and do all these things one after the other. I feel like crap and this week I'm feeling 10 times worse than I did last week. Also, I can't reply to comments, because apparently I'm not signed in... What the heck.
Wednesday, 15 December 2010
Chronic Fatigue = Difficulties
OTs tell me to pace, PTs tell me to push. I'm exhausted and sick and I can't do this. I want to sleep. I have so much physio to do and I want to do it, but I physically can't and it's frustrating. I feel like I'm not getting as much out of it as I could be and it's annoying me. I want to get to a point where I can live comfortably; I know the pain won't go and I know this will help, I just can't help pushing myself so hard.
Physio is now focusing on my legs, shoulders and my back. My back (like my sense of humour) is twisted and the muscles are weak so standing upright is really, really difficult. I can't help but feel the physios are just as frustrated with me as I am with myself, hence the pushing and pushing. I also tend to get a bit involved too, like with the table tennis today, I kept trying to reach for it and I didn't need to; I just ended up putting my back out more.
I'm hoping tomorrow will be a better day, but I only have three breaks, all day and one of those is lunch. It's literally solid from 8:30 until 4, but you'll see tomorrow when I do my daily plan in the morning. I'm really starting to hate myself because I can't do things; I understand the need for "Positive Mental Attitude" but frankly, that's bullshit. How can I have PMA when most of my mood is down and everything feels really negative?
Beh, maybe I'll be allowed to sleep through tomorrow... Hopefully I won't be told "you don't look ill" like I was this morning, I know it's supposed to be a compliment, I know that; but it's my most hated phrase ever. I hate it even more than "I could care less" and I hate that phrase a lot.
Anyway, enough ranting from me today, I'm sure you don't want to read it.
Physio is now focusing on my legs, shoulders and my back. My back (like my sense of humour) is twisted and the muscles are weak so standing upright is really, really difficult. I can't help but feel the physios are just as frustrated with me as I am with myself, hence the pushing and pushing. I also tend to get a bit involved too, like with the table tennis today, I kept trying to reach for it and I didn't need to; I just ended up putting my back out more.
I'm hoping tomorrow will be a better day, but I only have three breaks, all day and one of those is lunch. It's literally solid from 8:30 until 4, but you'll see tomorrow when I do my daily plan in the morning. I'm really starting to hate myself because I can't do things; I understand the need for "Positive Mental Attitude" but frankly, that's bullshit. How can I have PMA when most of my mood is down and everything feels really negative?
Beh, maybe I'll be allowed to sleep through tomorrow... Hopefully I won't be told "you don't look ill" like I was this morning, I know it's supposed to be a compliment, I know that; but it's my most hated phrase ever. I hate it even more than "I could care less" and I hate that phrase a lot.
Anyway, enough ranting from me today, I'm sure you don't want to read it.
Too Early
Whose idea was it to wake up ill people at like 6:30?! It's madness and completely unnecessary.
I'm really not feeling well today, not just the tiredness, but I ache too. God, I want this to end and I have to be at the physio department all day again today too. I can't keep this up, it's too hard. Eugh.
Anyway, plan for the day:
9:00 - Stretch
10:30 - Relaxation
12:00 - Lunch
13:30 - Physio
15:00 - Sports and Recreation
17:00 - Dinner
I'm really not feeling well today, not just the tiredness, but I ache too. God, I want this to end and I have to be at the physio department all day again today too. I can't keep this up, it's too hard. Eugh.
Anyway, plan for the day:
9:00 - Stretch
10:30 - Relaxation
12:00 - Lunch
13:30 - Physio
15:00 - Sports and Recreation
17:00 - Dinner
Tuesday, 14 December 2010
Cauliflower Cheese!
It exists and I'm so pleased with it!
I haven't cooked for so long, that I have almost forgotten how. The heat in the kitchen nearly killed me (I kept having to sit by the open window) and now I have the biggest headache ever and I feel like I've been starved of oxygen or something. Bleh!
Physio was... well, split into stretches then exercises straight after then again after cooking! It was relentless, but if it was easy, I wouldn't need to do it, would I? I just wish it wasn't three times in one day with cooking in between! I'm completely exhausted and it's only 16:30!
I think the main reason why I managed to cook "properly" was because I was heavily supervised, if it wasn't for that, there's no way I would have been able to do it! I had to lay down for 45 minutes after cooking to recover for physio! I am trying, I really am, but it's so hard and it's getting really depressing having everything drilled into me. I should really tell the department of work and pensions that my condition has changed and has got worse. One of the new girls who has EDS gets full disability living allowance and isn't as bad as me!
I have more physio exercises to do and I don't know how I will survive tomorrow, I really don't. I want to sleep and sleep forever. First, I'll eat my cauliflower cheese and I'll tell you all how it was (and if I actually ate it and not a Pot Noodle instead!)
 |
| I cooked this! |
Physio was... well, split into stretches then exercises straight after then again after cooking! It was relentless, but if it was easy, I wouldn't need to do it, would I? I just wish it wasn't three times in one day with cooking in between! I'm completely exhausted and it's only 16:30!
I think the main reason why I managed to cook "properly" was because I was heavily supervised, if it wasn't for that, there's no way I would have been able to do it! I had to lay down for 45 minutes after cooking to recover for physio! I am trying, I really am, but it's so hard and it's getting really depressing having everything drilled into me. I should really tell the department of work and pensions that my condition has changed and has got worse. One of the new girls who has EDS gets full disability living allowance and isn't as bad as me!
I have more physio exercises to do and I don't know how I will survive tomorrow, I really don't. I want to sleep and sleep forever. First, I'll eat my cauliflower cheese and I'll tell you all how it was (and if I actually ate it and not a Pot Noodle instead!)
Week 2, Day 2
Mmnnnnnnnnnnnnnnnnngggggg. Not feeling good today.
Today's relentless plan is:
7:30 - Breakfast
9:00 - Stretch
9:30 - Workshop (arts and crafts)
10:30 - Physio
11:00 - Intro to Relaxation
12:00 - Lunch
13:00 - Kitchen (cooking)
15:30 - Physio
17:00 - Lunch
Nonstop today, eugh. Maybe I'll get a bacon roll to cheer me up
Update: Bacon roll eaten, it was good :)
Today's relentless plan is:
7:30 - Breakfast
9:00 - Stretch
9:30 - Workshop (arts and crafts)
10:30 - Physio
11:00 - Intro to Relaxation
12:00 - Lunch
13:00 - Kitchen (cooking)
15:30 - Physio
17:00 - Lunch
Nonstop today, eugh. Maybe I'll get a bacon roll to cheer me up
Update: Bacon roll eaten, it was good :)
Monday, 13 December 2010
Oh, Bugger!
I was portered back to the ward after physio this afternoon, but I was supposed to stay at the department for a talk on pacing (for some reason it was assumed that it was back on the ward) I feel really bad that I've now missed it, so I'll have to apologise to the occupational therapists tomorrow and ask what I missed.
I'm also finding physio really difficult, it's not that I don't want to do it, it's just really, really hard. I wish I could do it properly, but I suppose if I could do it all easily I wouldn't be here in the first place. Maybe I'm just having a down day as there's new people on the ward and they're not very talkative. Feeling lonely...
My physiotherapist is really, really good, but she told me off for my fingers constantly clicking. Apparently, the only difference it makes is that it makes the joints looser. There's no damage or anything done, it just makes them looser and that's what the physio is trying to rectify, so doing that is a step backward. However, it's ok for my knees, shoulder and neck to do it because it's putting things back rather than stretching them!
It also turns out that my proprioception is really bad, but apparently that's normal for patients with Ehlers-Danlos. I'm starting to feel that it's being really drilled in that I have a condition/illness/whatever you want to call it, and it's really starting to get to me. It's hard to accept it and I keep falling back to humour when I should be serious. I know I shouldn't, but I don't know how to stop it.
I think maybe my reason for feeling down is my severe lack of supernoodleage ability or not being able to eat my cup-a-pasta things. I don't know. Huge sigh.
I'm also finding physio really difficult, it's not that I don't want to do it, it's just really, really hard. I wish I could do it properly, but I suppose if I could do it all easily I wouldn't be here in the first place. Maybe I'm just having a down day as there's new people on the ward and they're not very talkative. Feeling lonely...
My physiotherapist is really, really good, but she told me off for my fingers constantly clicking. Apparently, the only difference it makes is that it makes the joints looser. There's no damage or anything done, it just makes them looser and that's what the physio is trying to rectify, so doing that is a step backward. However, it's ok for my knees, shoulder and neck to do it because it's putting things back rather than stretching them!
It also turns out that my proprioception is really bad, but apparently that's normal for patients with Ehlers-Danlos. I'm starting to feel that it's being really drilled in that I have a condition/illness/whatever you want to call it, and it's really starting to get to me. It's hard to accept it and I keep falling back to humour when I should be serious. I know I shouldn't, but I don't know how to stop it.
I think maybe my reason for feeling down is my severe lack of supernoodleage ability or not being able to eat my cup-a-pasta things. I don't know. Huge sigh.
Arrived Safely!
Just, that is! The traffic this morning on the M25 was incredible, it took us over two hours to get here and even then there were people whose driving was atrocious (nearly causing more accidents!) I think there was an accident at junction 16, but the tailbacks were up to junction 28, so it was pretty harsh. I hope dad got back ok (if he's even back yet!)
Today's plan has already partially been run through, but here it is anyway! It's nice and light today, thankfully.
10:00 - Weekend Review
10:30 - Anatomy and Healing Talk
12:00 - Lunch!
14:00 - Physio
16:00 - Pacing Talk
17:00 - Dinner!
I have realised a huge flaw in my plans for having my own meals, and that is I am missing both a mug and a bowl... So... Yeah! I have 4 Pot Noodles, at least and I can bring a bowl and a mug next week for my Supernoodles and my pasta soup things! I never thought about it, but looks like I should've! The good news is that my TV tuner now works and my internet is really fast today so I have something to do in the evenings and when I'm not at Physio! Tomorrow's schedule is a harsh one as I'm on the go pretty much all day!
Anyone want to bus me a bowl and a mug so I can eat my supernoodles and cup-a-pasta things? No? Aww...
Today's plan has already partially been run through, but here it is anyway! It's nice and light today, thankfully.
10:00 - Weekend Review
10:30 - Anatomy and Healing Talk
12:00 - Lunch!
14:00 - Physio
16:00 - Pacing Talk
17:00 - Dinner!
I have realised a huge flaw in my plans for having my own meals, and that is I am missing both a mug and a bowl... So... Yeah! I have 4 Pot Noodles, at least and I can bring a bowl and a mug next week for my Supernoodles and my pasta soup things! I never thought about it, but looks like I should've! The good news is that my TV tuner now works and my internet is really fast today so I have something to do in the evenings and when I'm not at Physio! Tomorrow's schedule is a harsh one as I'm on the go pretty much all day!
 |
| Sunrise from the car window! |
Anyone want to bus me a bowl and a mug so I can eat my supernoodles and cup-a-pasta things? No? Aww...
Week Two!
Luckily, I don't need to be back at the hospital until 10am today; as I woke up really late after a rough night last night. I'm blogging from the A120 at the moment, heading toward the M1 after a hellish rush earlier. I hope I have everything...
First thing this morning from what I can remember is Weekend Review, which is at 10, after that, I have no idea, but I'll blog my timetable as usual.
Hopefully there'll be no weirdos this week, I don't think my sanity could take it, let alone my heart! So fingers crossed for no serial killers, rapists, etc!
This week I'm bringing my own food; I don't want a repeat of last week, being ill. As it was horrible. Right, back to Tweeting my journey, I'll blog later if I have the energy!
First thing this morning from what I can remember is Weekend Review, which is at 10, after that, I have no idea, but I'll blog my timetable as usual.
Hopefully there'll be no weirdos this week, I don't think my sanity could take it, let alone my heart! So fingers crossed for no serial killers, rapists, etc!
This week I'm bringing my own food; I don't want a repeat of last week, being ill. As it was horrible. Right, back to Tweeting my journey, I'll blog later if I have the energy!
Friday, 10 December 2010
Home for the weekend!
First thing's first, the Stanmore Sex Pest was arrested yesterday and taken away. As far as I know, both the hospital and the lady are pressing charges against him and he admitted to getting his penis out. Yikes.
Yesterday was pretty hectic, what with the arrest and the police around the ward, but in general too. I've got the hang of the stretches now; I learnt that if I don't do the reaching ones or the bending down ones that I feel ok after. So I'm really getting the hang of that side of things!
The bedroom posture session with occupational therapy was fantastic too, and I have a pillow to take home to try. It's one of those really expensive memory foam pillows that is a bit like quicksand (the real stuff that's wet) but it springs back really slowly! It's like sleeping on hard bread dough, but it's really comfortable. I tried it last night and it's wonderful, so I can't wait to try it tonight at home!
Yesterday afternoon was swimming (finally) and I loved it! I tried to do as much as I would normally in the pool, but I ended up injuring myself (I hurt my knee) so I'm an absolute mess today. The porters took over an hour to collect me from the pool (which was really annoying) so I was quite late for dinner.
Dinner itself was supposed to be a salmon, cucumber and mayo sandwich, but ended up as steamed salmon steak with cabbage and potatoes in a cheese and herb sauce. It wasn't terrible it just wasn't what I had expected. The girls (well, the queen bee and her loyal guard) had ordered pizza, without telling the rest of the girls, or the boys, so we were all feeling a bit put out when we got thrown the leftovers! I managed to grab a slice and it tasted SO GOOD, but then again, ANYTHING would've tasted amazing after eating the abysmal hospital food for 4 nights.
In the evening I called home and had a chat with mum as I had a walk in the cold to try and walk off the pain (as sometimes I can't ignore it and it tries to take over) and I went to the restaurant. I bought a couple of bottles of Mountain Dew and some crisps and walked back. I felt ok once I got back, but my neck started to ache just before bed. When I woke up this morning though, I could certainly feel it. My legs are so sore.
I had some painkillers this morning with my 'breakfast' of normal pills, so I feel a bit groggy and rough at the moment (good thing I'm home) I have some exercises and things to do from the physio this weekend, but for the moment, I would like to sleep, then play some videogames!
Yay, home!
Yesterday was pretty hectic, what with the arrest and the police around the ward, but in general too. I've got the hang of the stretches now; I learnt that if I don't do the reaching ones or the bending down ones that I feel ok after. So I'm really getting the hang of that side of things!
The bedroom posture session with occupational therapy was fantastic too, and I have a pillow to take home to try. It's one of those really expensive memory foam pillows that is a bit like quicksand (the real stuff that's wet) but it springs back really slowly! It's like sleeping on hard bread dough, but it's really comfortable. I tried it last night and it's wonderful, so I can't wait to try it tonight at home!
Yesterday afternoon was swimming (finally) and I loved it! I tried to do as much as I would normally in the pool, but I ended up injuring myself (I hurt my knee) so I'm an absolute mess today. The porters took over an hour to collect me from the pool (which was really annoying) so I was quite late for dinner.
Dinner itself was supposed to be a salmon, cucumber and mayo sandwich, but ended up as steamed salmon steak with cabbage and potatoes in a cheese and herb sauce. It wasn't terrible it just wasn't what I had expected. The girls (well, the queen bee and her loyal guard) had ordered pizza, without telling the rest of the girls, or the boys, so we were all feeling a bit put out when we got thrown the leftovers! I managed to grab a slice and it tasted SO GOOD, but then again, ANYTHING would've tasted amazing after eating the abysmal hospital food for 4 nights.
In the evening I called home and had a chat with mum as I had a walk in the cold to try and walk off the pain (as sometimes I can't ignore it and it tries to take over) and I went to the restaurant. I bought a couple of bottles of Mountain Dew and some crisps and walked back. I felt ok once I got back, but my neck started to ache just before bed. When I woke up this morning though, I could certainly feel it. My legs are so sore.
I had some painkillers this morning with my 'breakfast' of normal pills, so I feel a bit groggy and rough at the moment (good thing I'm home) I have some exercises and things to do from the physio this weekend, but for the moment, I would like to sleep, then play some videogames!
Yay, home!
Thursday, 9 December 2010
After the events of last night!
So, this morning is very strange. Colonel Sex Pest Boozehound the Third gave me a fright this morning. "Why did you move, Sam?" I had flashes of HAL9000, froze then gave a "because I was ill the other night, I asked to move closer to the door for the bathroom!" Bloody heck, not the way you should start the morning! In fact he's just asked me if I wanted a bacon roll! What's that, a bacon roll with a side of RAPE?! Jesus Christ.
Anyway, yesterday wasn't too bad (aside from the evening!), I had stretches, occupational therapy (lifting and handling in the kitchen), physio then occupational therapy up until lunchtime, then it was sports and recreation yesterday afternoon (where I managed to hurt my ankle). My physio exercises were all based around the ball, which was fun and I hope to get more chance with it today!
So, today's plan is:
8:30 - Physio
9:00 - Stretches
11:00 - Postural Management
12:00 - Lunch
14:30 - Swimming (YAY!)
16:30 - Physio (again)
17:00 - Dinner
Between 9:30 and 11:00 this morning, I'll probably be staying at Physio to do my other exercises, which means I'll miss the juice man again, boo.
I'll try to keep on track today with the updates and hopefully something like last night won't happen again.
Update: No, I did not get a bacon roll, I thought that much was obvious...
Anyway, yesterday wasn't too bad (aside from the evening!), I had stretches, occupational therapy (lifting and handling in the kitchen), physio then occupational therapy up until lunchtime, then it was sports and recreation yesterday afternoon (where I managed to hurt my ankle). My physio exercises were all based around the ball, which was fun and I hope to get more chance with it today!
So, today's plan is:
8:30 - Physio
9:00 - Stretches
11:00 - Postural Management
12:00 - Lunch
14:30 - Swimming (YAY!)
16:30 - Physio (again)
17:00 - Dinner
Between 9:30 and 11:00 this morning, I'll probably be staying at Physio to do my other exercises, which means I'll miss the juice man again, boo.
I'll try to keep on track today with the updates and hopefully something like last night won't happen again.
Update: No, I did not get a bacon roll, I thought that much was obvious...
Readily Assaulted
Now, I promised I'd blog about what happened today in my sessions, but there was an event.
There are two conservatories here, one for the ladies and one for the men. The men's has heating and a tv, so sometimes the ladies come over to watch it in the evening. Nothing weird there!
One of the men, who is a bit overreaching and likes to tell people how to do things properly was exposed for smuggling in alcohol! Basically, he passed out in the dining room and the nurses were "concerned" so they went to check his things to see if he had taken something he shouldn't have. They found... a box of Pinot Grigio (a type of white wine) that he was mixing with apple juice as a disguise!
Now, that's a bannable offence right there, as the entire hospital is non-smoking and no alcohol allowed, but it gets worse. They cart him off to his bed, with oxygen and give him an ECG and check his vitals, etc and after a couple of hours, he wakes up. One of the women was in the conservatory watching the football, he wandered in, there was some loud noises and she wandered out looking a bit sour-faced.
Turns out she had been sexually assaulted by him when he went in! The nurses escorted him back to his bed and told him to go back to sleep. He went back and started to open and shut the curtains by his bed about a hundred times, muttering the F-word under his breath in various forms, so yeah, I was worried and went to the nurses to say that his actions seemed a bit weird! The nurses kindly moved me down the other end of the ward (even though I didn't ask, but it's closer to the bathroom, so yay) and the rest of us had a discussion as we were concerned!
Strangely, the guy is still on the ward (why weren't the police alerted??!) and we are all a bit shaken to say the least! Who knows what he could do if he wakes up during the night... For me, this is a legitimate "SEND HELP" message. I would settle for food though, as I am starving! I think he's now resorted to bouncing on his bed and it's now midnight... Did he have a stroke? Drain Bramage? Or is this a break of some sort?
Anyway, tomorrow (if I survive) I'll blog about the extremely long day today has been! Night night. Also, I seem to have misplaced a pair of pyjamas... hmmm...
There are two conservatories here, one for the ladies and one for the men. The men's has heating and a tv, so sometimes the ladies come over to watch it in the evening. Nothing weird there!
One of the men, who is a bit overreaching and likes to tell people how to do things properly was exposed for smuggling in alcohol! Basically, he passed out in the dining room and the nurses were "concerned" so they went to check his things to see if he had taken something he shouldn't have. They found... a box of Pinot Grigio (a type of white wine) that he was mixing with apple juice as a disguise!
Now, that's a bannable offence right there, as the entire hospital is non-smoking and no alcohol allowed, but it gets worse. They cart him off to his bed, with oxygen and give him an ECG and check his vitals, etc and after a couple of hours, he wakes up. One of the women was in the conservatory watching the football, he wandered in, there was some loud noises and she wandered out looking a bit sour-faced.
Turns out she had been sexually assaulted by him when he went in! The nurses escorted him back to his bed and told him to go back to sleep. He went back and started to open and shut the curtains by his bed about a hundred times, muttering the F-word under his breath in various forms, so yeah, I was worried and went to the nurses to say that his actions seemed a bit weird! The nurses kindly moved me down the other end of the ward (even though I didn't ask, but it's closer to the bathroom, so yay) and the rest of us had a discussion as we were concerned!
Strangely, the guy is still on the ward (why weren't the police alerted??!) and we are all a bit shaken to say the least! Who knows what he could do if he wakes up during the night... For me, this is a legitimate "SEND HELP" message. I would settle for food though, as I am starving! I think he's now resorted to bouncing on his bed and it's now midnight... Did he have a stroke? Drain Bramage? Or is this a break of some sort?
Anyway, tomorrow (if I survive) I'll blog about the extremely long day today has been! Night night. Also, I seem to have misplaced a pair of pyjamas... hmmm...
Wednesday, 8 December 2010
And I was doing so well, too.
Bah. I'll get on to today when I'm feeling a bit better. I just played a game of badminton (well, standing and batting a shuttle) and managed to do too much as well as pop out my ankle. Combined with being ill last night, I'm not doing well.
Grabbed a nurse earlier and I'm going to get my dinner in bed, dunno if I fancy it though as I'm feeling awful.
Grabbed a nurse earlier and I'm going to get my dinner in bed, dunno if I fancy it though as I'm feeling awful.
Day 3, oh what a night...
Lets start with yesterday and the not so good chilli I mentioned. I felt so ill last night (and to be fair this morning too) that I spent most of the night/morning in the rather small bathroom. Awful. I think I will be sticking to the non-cooked food, or I'll grab stuff from the cafe (although I can't actually get there). This morning will be an apple for breakfast and I think I'll take a shower too.
Today's plan is completely full and is going to be hell with me feeling ill. But anyway, here's the plan:
7:30 - Breakfast (gonna skip, again)
9:00 - Stretches
10:00 - Lifting and Handling
11:00 - Physio
11:30 - Occupational Therapy
12:00 - Lunch
15:00 - Sport and Recreation (at the gym)
17:00 - Dinner
Quite honestly, today I would rather stay in bed and do nothing today. My knees are killing from yesterday (and I can barely walk), I feel really ill and my skin seems to have a yellow sheen this morning...
I am going to struggle.
Oh! Before I forget, for those interested, my pill list:
80mg Propranolol (slow release)
60mg Duloxetine
20mg Omeprazole
125mg Lamotrogine
1000mg/20mg Co-Dydramol (two 500/10 tablets!)
Today's plan is completely full and is going to be hell with me feeling ill. But anyway, here's the plan:
7:30 - Breakfast (gonna skip, again)
9:00 - Stretches
10:00 - Lifting and Handling
11:00 - Physio
11:30 - Occupational Therapy
12:00 - Lunch
15:00 - Sport and Recreation (at the gym)
17:00 - Dinner
Quite honestly, today I would rather stay in bed and do nothing today. My knees are killing from yesterday (and I can barely walk), I feel really ill and my skin seems to have a yellow sheen this morning...
I am going to struggle.
Oh! Before I forget, for those interested, my pill list:
80mg Propranolol (slow release)
60mg Duloxetine
20mg Omeprazole
125mg Lamotrogine
1000mg/20mg Co-Dydramol (two 500/10 tablets!)
Tuesday, 7 December 2010
Physio and other things that make me ache.
My physio is really good, she did my proprioception tests (I'm useless!) and some light but effective exercises, which I have to continue with when I'm out of the hospital. The idea behind the exercises is to strengthen my legs and help me to walk properly. They will hopefully give my knees strength as well, because they are really, really bad!
Dinner tonight was the vegetarian chilli again, but tonight it was awful. There was no sauce, it was all dry and chewy and the rice was really dry. I'm hoping that things will be a little better tomorrow! I think for my lunches, I might just stick to the salads as they were fresh and really quite nice. Still disappointed at the lack of bacon on the menu though!
This evening, not much is planned except to suffer through the aftereffects of this chilli and to sleep later. Tomorrow, I won't do as much stretching and I'll certainly avoid the bending down ones!
Also, I've noticed that the lights here are really burning through my eyes (much, much too bright!) They're getting really dry and really sore. I asked the nurses for an atomiser with some water in to spray on my eyes to keep them from completely drying out. No atomisers, but something just as good! Tiny little bottles of sterilised water for injections, which I can use to dab on my eyes! (photo here!)
The water makes so much difference! I wish that I had my own room or a dimmer light or something! Bleh, I'm so tired, and I get to do it all again tomorrow...
Dinner tonight was the vegetarian chilli again, but tonight it was awful. There was no sauce, it was all dry and chewy and the rice was really dry. I'm hoping that things will be a little better tomorrow! I think for my lunches, I might just stick to the salads as they were fresh and really quite nice. Still disappointed at the lack of bacon on the menu though!
This evening, not much is planned except to suffer through the aftereffects of this chilli and to sleep later. Tomorrow, I won't do as much stretching and I'll certainly avoid the bending down ones!
Also, I've noticed that the lights here are really burning through my eyes (much, much too bright!) They're getting really dry and really sore. I asked the nurses for an atomiser with some water in to spray on my eyes to keep them from completely drying out. No atomisers, but something just as good! Tiny little bottles of sterilised water for injections, which I can use to dab on my eyes! (photo here!)
The water makes so much difference! I wish that I had my own room or a dimmer light or something! Bleh, I'm so tired, and I get to do it all again tomorrow...
Stretches! Or "What Not To Do When You Have POTS"
So this morning, it was stretches! This involved a lot of bending about, which I can do easily! What I found I can't do easily is repeated bending down! I had a mega POTS attack that even my temperature sky rocketed! I have a really bad headache now that'll probably last me the entire day. Eugh.
Lunch today was a chicken salad and it was actually really nice! It was all fresh and came with potato salad too! :) Very impressed! I might have to order more of the salads I think! I'm currently sipping away at a can of coke and I'm relaxing on my bed, waiting for physio this afternoon. I took a couple more photos earlier, which are below!
Lunch today was a chicken salad and it was actually really nice! It was all fresh and came with potato salad too! :) Very impressed! I might have to order more of the salads I think! I'm currently sipping away at a can of coke and I'm relaxing on my bed, waiting for physio this afternoon. I took a couple more photos earlier, which are below!
 |
| Frosty grass! Great iPhone wallpaper! |
 |
| A wide shot of my bed! |
 |
| The prison where I'm staying! (one side of it) |
Breakfast!
Breakfast this morning was at the restaurant. I lavished myself in bacon (3 rashers! I know, I know!), a sausage (in a rather chewy roll) and two hash browns! I also grabbed a mountain dew as they had them. This won't be an every day thing, I just wanted something as the breakfast here doesn't cater for lactose intolerance (milllllk, bleh!) and I couldn't manage the walk every day either!
Stretches in about half an hour, hopefully I'll be portered down there!
I'm going to go and sit in the conservatory area for a bit to see if I can get a decent internet connection!
Stretches in about half an hour, hopefully I'll be portered down there!
I'm going to go and sit in the conservatory area for a bit to see if I can get a decent internet connection!
Day 2!
So it's 6:45am on day two of my stay here at Stanmore. I was so exhausted last night that I went to sleep at about 9:45 last night. I woke up a few times through the night (mainly thanks to this one guy who snores really loudly and makes weeping noises in his sleep) I don't like being startled awake, because it makes me feel really rough. I had some nightmares last night and I felt a bit strange waking up, not knowing where I was, but I think that's to be expected. At least I got some sleep!
There's one guy on the ward who is a bit overreaching, he's alright, but he can be a bit loud. Last night as I was just dropping off to sleep he asked if I was going to sleep and woke me up. Really counter productive, but he didn't know.
The lights have just come on and it's time for the pill rally. Bleh. I want bacon for breakfast, but I have a feeling it's not happening! Breakfast is at 7:30 this morning, so we'll see. I might pop to the restaurant and get something warm. It depends what we're having.
The plan for today, is as follows:
7:30am - Breakfast
9:00am - Stretching
12:00pm - Lunch
14:30pm - Physio
17:00pm - Dinner
So not a lot going on today, and to be honest, I hope it stays that way.
Now, it's time for pills and getting dressed, so I can have breakfast in about 20 minutes. I am really not feeling productive today (I admit it, I feel like crap and I don't want to do anything!) so yeah. I'll root through my t-shirts and find an ironic one, or something really obscure!
Until later!
There's one guy on the ward who is a bit overreaching, he's alright, but he can be a bit loud. Last night as I was just dropping off to sleep he asked if I was going to sleep and woke me up. Really counter productive, but he didn't know.
The lights have just come on and it's time for the pill rally. Bleh. I want bacon for breakfast, but I have a feeling it's not happening! Breakfast is at 7:30 this morning, so we'll see. I might pop to the restaurant and get something warm. It depends what we're having.
The plan for today, is as follows:
7:30am - Breakfast
9:00am - Stretching
12:00pm - Lunch
14:30pm - Physio
17:00pm - Dinner
So not a lot going on today, and to be honest, I hope it stays that way.
Now, it's time for pills and getting dressed, so I can have breakfast in about 20 minutes. I am really not feeling productive today (I admit it, I feel like crap and I don't want to do anything!) so yeah. I'll root through my t-shirts and find an ironic one, or something really obscure!
Until later!
Monday, 6 December 2010
Physio Plan!
I suppose I had better update before I head to bed. I am so tired there aren't words to describe it.
Physio this afternoon was good, they want to try and get my hands and my back working properly, which sounds fantastic. I don't know how that will happen, but it sounds good. I'm looking forward to the swimming and getting to sleep, to be honest!
Also had the pacing seminar, it was just covering the basics and nothing too interesting, hopefully it'll be expanded on later with tips on how I can go about doing it myself!
Dinner was the standard fare of microwaved/steamed hospital food of crap. I had the vegetable chilli, it wasn't too bad, but it was certainly hospital food, bleh. I also missed out on my meatballs, which sucked! I really wanted meatballs :(
Physio this afternoon was good, they want to try and get my hands and my back working properly, which sounds fantastic. I don't know how that will happen, but it sounds good. I'm looking forward to the swimming and getting to sleep, to be honest!
Also had the pacing seminar, it was just covering the basics and nothing too interesting, hopefully it'll be expanded on later with tips on how I can go about doing it myself!
Dinner was the standard fare of microwaved/steamed hospital food of crap. I had the vegetable chilli, it wasn't too bad, but it was certainly hospital food, bleh. I also missed out on my meatballs, which sucked! I really wanted meatballs :(
Induction Done!
I've been inducted and I have a "non-removable" "LASER//BAND" ID band (I'm sure scissors will get it off!) Induction has given me a plan for the three weeks and it doesn't seem to be too bad! Good thing I brought all this stuff to do! (Looks like I'm going to get through a lot of books and videogames!)
At 11, I have a "Making Changes" course, which I have no idea about! Then this afternoon at 3 it's physio at the gym at the top of the hill and then back to the "villa" for a "Pacing Seminar"! Luckily I have a porter to take me up the hill and back down it! Hopefully I'll have a porter all the time, but we'll see!
My Friday afternoons are clear and I might get to go home on the 23rd rather than Christmas Eve, which will be great! My Wednesdays and Thursdays are pretty much clear, something first thing in the morning and something last thing in the afternoon. Hopefully they won't be too stressful!
Will update this more in a minute, as I have to go to my "Making Changes" thing now!
Ok, "Making Changes" is done, and I've managed to fix the wifi so I can access the internet on my iPad! My poor iPhone isn't going to know what hit it! Poor T-Mobile too, for my data usage this month! Hah! Anyway, back to "Making Changes" it was basically a discussion on "Engaging" and that this is very much an experimental "Eastern style" approach to coping with disorders and pain, meaning you get out of it what you put in! So yeah.
Just had my swabbing by the nurse too, bleh, swabs. My nose still itches from it! I had to do the groin one myself, luckily, but still! I wonder what diseases I have...
I put a photo up on Twitter of my lair for this week, it's not too bad (photo is here), but we'll see! I might have to be moved if I get to hot, or request a fan as it's BOILING hot on the ward! Nurse has been again, asking me lots of questions! I've been banned from using the bath already! Hah!
Right, so now I have two hours until my physio session! I'm going to ask for LOTS of swimming! Ok, that's most of the day done! I'll update again later!
At 11, I have a "Making Changes" course, which I have no idea about! Then this afternoon at 3 it's physio at the gym at the top of the hill and then back to the "villa" for a "Pacing Seminar"! Luckily I have a porter to take me up the hill and back down it! Hopefully I'll have a porter all the time, but we'll see!
My Friday afternoons are clear and I might get to go home on the 23rd rather than Christmas Eve, which will be great! My Wednesdays and Thursdays are pretty much clear, something first thing in the morning and something last thing in the afternoon. Hopefully they won't be too stressful!
Will update this more in a minute, as I have to go to my "Making Changes" thing now!
Ok, "Making Changes" is done, and I've managed to fix the wifi so I can access the internet on my iPad! My poor iPhone isn't going to know what hit it! Poor T-Mobile too, for my data usage this month! Hah! Anyway, back to "Making Changes" it was basically a discussion on "Engaging" and that this is very much an experimental "Eastern style" approach to coping with disorders and pain, meaning you get out of it what you put in! So yeah.
Just had my swabbing by the nurse too, bleh, swabs. My nose still itches from it! I had to do the groin one myself, luckily, but still! I wonder what diseases I have...
I put a photo up on Twitter of my lair for this week, it's not too bad (photo is here), but we'll see! I might have to be moved if I get to hot, or request a fan as it's BOILING hot on the ward! Nurse has been again, asking me lots of questions! I've been banned from using the bath already! Hah!
Right, so now I have two hours until my physio session! I'm going to ask for LOTS of swimming! Ok, that's most of the day done! I'll update again later!
Made it! Have Internet! ...Just!
So, the car journey was awful as I expected it to be, lots of traffic on the M25, M1, etc. Took just under 2 hours to get here, but I made it, I have a bed (photos later, phone is veeeeery busy at the moment, giving my Macbook internet! A lot of people whinge about Apple's closed ecosystem, but it works!)
Nurse is coming about now to take vital statistics and then, who knows! Lunch is sandwiches, dinner I picked meatballs and tomorrow I had to order lunch and dinner. I think I picked a salad and for dinner, I can't remember! Not to worry, I know I picked 'safe' options, like fruit and juice and stuff!
The internet is slow, but I can blog, so that's a bonus! Stay tuned!
Update! 3G is totally a go, 7.2mb! I am now happy!
Photos of my lair to come later, probably this afternoon! Most of the guys here are already planning pub crawls (huge sigh), but it's a good thing I don't drink. I can't get the iPad to connect to the Macbook access point, but not to worry, it has books on it so I'm set with that! Now, what game to start first...?
Nurse is coming about now to take vital statistics and then, who knows! Lunch is sandwiches, dinner I picked meatballs and tomorrow I had to order lunch and dinner. I think I picked a salad and for dinner, I can't remember! Not to worry, I know I picked 'safe' options, like fruit and juice and stuff!
The internet is slow, but I can blog, so that's a bonus! Stay tuned!
Update! 3G is totally a go, 7.2mb! I am now happy!
Photos of my lair to come later, probably this afternoon! Most of the guys here are already planning pub crawls (huge sigh), but it's a good thing I don't drink. I can't get the iPad to connect to the Macbook access point, but not to worry, it has books on it so I'm set with that! Now, what game to start first...?
About to Leave!
Dad is currently defrosting the car, everything is packed and ready to go! I might be Tweeting from the road, so look me up! My twitter account is @bendylittleneko! Feel free to send me a DM for my email address if you want it!
Ok, here we go! I am not looking forward to this, the long car ride or the hospital. At least breakfast this morning warmed me up (barbecue beef supernoodles!)
Ok, see you on the flip side!
Ok, here we go! I am not looking forward to this, the long car ride or the hospital. At least breakfast this morning warmed me up (barbecue beef supernoodles!)
Ok, see you on the flip side!
4am!
Two hours and a bit hours to go until Mum and Dad will be driving me down to the hospital (the trip is about one and a half to two hours, I think and I need to be there for half eight.) And well, I can't sleep (not surprising), so I guess I'll do stuff to keep me occupied (like writing on here, playing some games for a bit).
I've got a medium-sized travel case packed with clothes and a brita water filter (because raw tap water makes me ill for some reason) and I have a smaller messenger bag stuffed full of gadgets and will soon include this laptop, too. Hopefully I won't forget anything, but knowing me, I probably will!
If I get chance, I will blog again before I leave here as well as try to when I arrive at the hospital. I'll take some photos of the "rehabilitation unit" villa and the little corner where I will be staying. So stay tuned! Hopefully there will be some phone reception there, or I will go slowly mad!
I've got a medium-sized travel case packed with clothes and a brita water filter (because raw tap water makes me ill for some reason) and I have a smaller messenger bag stuffed full of gadgets and will soon include this laptop, too. Hopefully I won't forget anything, but knowing me, I probably will!
If I get chance, I will blog again before I leave here as well as try to when I arrive at the hospital. I'll take some photos of the "rehabilitation unit" villa and the little corner where I will be staying. So stay tuned! Hopefully there will be some phone reception there, or I will go slowly mad!
Friday, 3 December 2010
New Blog!
Hi everyone, this will be a blog for my (hopefully not) torturous three week inpatient "chronic pain rehabilitation" stay at the "Royal National Orthopaedic Hospital" at Stanmore, near London, England. I will try to blog here daily (phone reception permitting, as I will be tethering!) with photos (maybe videos) and recaps of my day! But if I can't, I will do a MEGA UPDATE™ at the weekends as I will be home! (the rehab centre shuts at weekends)
As most of you will know, I am a 24 year old guy and sufferer of the genetic conditions Ehlers-Danlos Syndrome (Type III) and Marfan's Syndrome as well as Scoliosis, Autonomic Dysfunction, Irritable Bowel Syndrome and Bipolar II Disorder. That's quite a list, and sadly, some of them are getting worse. Hopefully this "visit" will help me deal with my various disorders and allow me to cope with day to day living, which at the moment I am unfortunately really badly struggling with.
My Stanmore visit will start on Monday 6th of December and end on the evening of Christmas Eve, meaning I'll miss the scheduled family Christmas Eve dinner, however, it has been rescheduled, so I won't miss out on my sausages wrapped in bacon! Because I love bacon (but doesn't everyone?!)
Please bare with my sometimes incoherent rambling and sudden tendencies to rant about things. I will try to stay on topic, but I will sometimes deviate, get distracted by things or just be generally nerdy! Hopefully this blog will keep me sane, as when I visited the hospital last month, I found it exceptionally creepy. Silent Hill creepy...
As most of you will know, I am a 24 year old guy and sufferer of the genetic conditions Ehlers-Danlos Syndrome (Type III) and Marfan's Syndrome as well as Scoliosis, Autonomic Dysfunction, Irritable Bowel Syndrome and Bipolar II Disorder. That's quite a list, and sadly, some of them are getting worse. Hopefully this "visit" will help me deal with my various disorders and allow me to cope with day to day living, which at the moment I am unfortunately really badly struggling with.
My Stanmore visit will start on Monday 6th of December and end on the evening of Christmas Eve, meaning I'll miss the scheduled family Christmas Eve dinner, however, it has been rescheduled, so I won't miss out on my sausages wrapped in bacon! Because I love bacon (but doesn't everyone?!)
Please bare with my sometimes incoherent rambling and sudden tendencies to rant about things. I will try to stay on topic, but I will sometimes deviate, get distracted by things or just be generally nerdy! Hopefully this blog will keep me sane, as when I visited the hospital last month, I found it exceptionally creepy. Silent Hill creepy...
Subscribe to:
Comments (Atom)