I give thanks for all the help I've had from friends over this difficult time. My mobility is improving but bending, stretching and lifting any weight still defeats me, so shopping for more than one item at a time in a very small shop is problematic. This morning it was Tani who brought items from one health food shop on her way to work in another. She also tried to get me some bits from the Co-op but they're in the middle of a refit and much stock is missing or hidden away. I give thanks she rang me so I could come up with random alternatives - milk instead of water, peaches instead of kefir. Also for her having similar decorative taste to me so she could exclaim in delight at features in my home that others maybe don't appreciate.
I give thanks for taxis and treatment being on time - that's quite a treat! There was no parking right outside so the driver had to go down the road a bit and I was grateful for remembering just in time that I actually wanted to go to the station so this was fine. Even more fine when the he dropped me right outside the entrance! As the government has decided I'm not disabled any more I give thanks I'm over 60 and can buy a Senior Railcard - the plan being to get the £30 cost back in discounts before they (hopefully) admit I'm not as fit as they're pretending. For getting home before the heaviest rain came down.
I give thanks in less than two weeks' time an engineer will be here to fix my washing machine and keeping on top of laundry becomes less of a worry. He could have been here earlier but cleaning my blood is more important than my clothes... I give thanks I have plenty of those - especially small ones!
Monday 30 September 2019
Sunday 29 September 2019
Cincuenta
I give thanks for my £1 roll of white insulation tape for insulating my draughty living room window. Some strips are on their third stick and I still have half a roll if I de-insulate again and they decide they've had enough. Bargain!
I give thanks for the interesting views through this aperture. Late last night, despite the inclement weather, the takeaway across the road was doing a roaring trade. For resolving to try one of their curries some time...and also a veggie burger in a bun from the fish and chip shop a few doors down. My soul would prefer to live somewhere about as inhabited as Rannock Moor, but my joints and appetites can see the advantages of here, and though times are hard...sometimes so is cooking!
I give thanks for a mismatched bunch of leftovers going together so well I might make what I created deliberately next time. For rice pudding cooked with rice milk, not just because it's better for me but because it's really nice. For managing to get in and out of the bath - woohoo! There were some uncomfy moments but the worst was leaning down to put the plug in...
I give thanks for the interesting views through this aperture. Late last night, despite the inclement weather, the takeaway across the road was doing a roaring trade. For resolving to try one of their curries some time...and also a veggie burger in a bun from the fish and chip shop a few doors down. My soul would prefer to live somewhere about as inhabited as Rannock Moor, but my joints and appetites can see the advantages of here, and though times are hard...sometimes so is cooking!
I give thanks for a mismatched bunch of leftovers going together so well I might make what I created deliberately next time. For rice pudding cooked with rice milk, not just because it's better for me but because it's really nice. For managing to get in and out of the bath - woohoo! There were some uncomfy moments but the worst was leaning down to put the plug in...
Saturday 28 September 2019
Cuarenta y nueve
I give thanks for feeling normal for a while when I got home yesterday - well normal for me anyway! I had more energy and less pain than I've had for weeks and it was so good to remember what that was like. For cooking up a lovely veg and Quorn curry to celebrate...and for a lovely nap afterwards before back to normal for now.
Today I'd set myself a challenge - to see if I could mobilise as much as the DWP says I can. I give thanks I could, as there was a package of joint and muscle soothing cream waiting at the delivery office. I would like to note however that my attempt failed their 'reliability' criteria quite resoundingly as I couldn't do it as often as required (it's taken a week to try), needed frequent rest stops while taking way more than twice as long as a healthy person in between, and suffered considerable pain and fatigue as a result.
I give thanks my new to me bag from ebay made it into the building without a red card as I wouldn't want to make a habit of the journey - and also that as the seller refused my best offer, and no one else bid for it, it cost less than I was willing to pay! For a couple of bags I already own (plus a coat) getting too close to some paint some time, so the urge to treat myself seemed slightly justified. It's a fab burnt orange colour and will look great with the silk scarf I got in a charity shop last year...and the dress I bought in one last week. All I need now is to go somewhere for pleasure to wear them...
In the meantime I give thanks for the pleasure of doing very little for the rest of the day but rest, and make some gentle inroads into resolving some of the domestic chaos a spell of incapacity creates. For being so greedy with that curry last night simple snacks have been sufficient, and accepting though the pale blue jumper I was wearing now has turmeric coloured splatters where I missed my mouth, with the washing machine out of action it will just have to stay that way...
Today I'd set myself a challenge - to see if I could mobilise as much as the DWP says I can. I give thanks I could, as there was a package of joint and muscle soothing cream waiting at the delivery office. I would like to note however that my attempt failed their 'reliability' criteria quite resoundingly as I couldn't do it as often as required (it's taken a week to try), needed frequent rest stops while taking way more than twice as long as a healthy person in between, and suffered considerable pain and fatigue as a result.
I give thanks my new to me bag from ebay made it into the building without a red card as I wouldn't want to make a habit of the journey - and also that as the seller refused my best offer, and no one else bid for it, it cost less than I was willing to pay! For a couple of bags I already own (plus a coat) getting too close to some paint some time, so the urge to treat myself seemed slightly justified. It's a fab burnt orange colour and will look great with the silk scarf I got in a charity shop last year...and the dress I bought in one last week. All I need now is to go somewhere for pleasure to wear them...
In the meantime I give thanks for the pleasure of doing very little for the rest of the day but rest, and make some gentle inroads into resolving some of the domestic chaos a spell of incapacity creates. For being so greedy with that curry last night simple snacks have been sufficient, and accepting though the pale blue jumper I was wearing now has turmeric coloured splatters where I missed my mouth, with the washing machine out of action it will just have to stay that way...
Friday 27 September 2019
Cuarenta y ocho
Oh for goodness' sake! Pretty comfy drifting off last night...drowsy, drowsy, dream, dream, dream...then a couple of hours later its Aaargh, make it stop! Somehow I'd managed to hurt my back moving around in my sleep. I give thanks for eventually dozing off again and eventually waking up not too late to slowly do the things I needed to do. For the pain gradually easing, and that being bleary eyed doesn't matter too much on a dialysis day.
I give thanks for managing to send some emails about various tricksy matters. For trying to remain philosophical when they didn't produce the desired effects, and when finding out that all the info I had last Friday and again a couple of days ago regarding an upcoming investigative procedure is in fact wrong again. It seems to be my fate at the moment that many matters should be a struggle so I'm grateful for understanding ranting and raving about it won't help improve my sense of wellbeing at all, I just have to go with the flow and roll with the blows and remember none of it really matters in the grand scheme of things. I give thanks that sometimes things do go unexpectedly right for me too...like finding a chili and some pieces of fresh ginger and turmeric root had stayed usable for over a month in the fridge so I could throw them in the pestle with some seeds and stuff and pestle away some frustrations!
As there's still no news of the replacement washing machine part I give thanks for a bathroom with a window so small garments can drip over the bath, and an airy (and sometimes sunny) spare room when they've stopped. For dark clouds and bright sunshine, a streak of pale rainbow and geese flying over the field. They put me in a better mood coming home...
I give thanks for managing to send some emails about various tricksy matters. For trying to remain philosophical when they didn't produce the desired effects, and when finding out that all the info I had last Friday and again a couple of days ago regarding an upcoming investigative procedure is in fact wrong again. It seems to be my fate at the moment that many matters should be a struggle so I'm grateful for understanding ranting and raving about it won't help improve my sense of wellbeing at all, I just have to go with the flow and roll with the blows and remember none of it really matters in the grand scheme of things. I give thanks that sometimes things do go unexpectedly right for me too...like finding a chili and some pieces of fresh ginger and turmeric root had stayed usable for over a month in the fridge so I could throw them in the pestle with some seeds and stuff and pestle away some frustrations!
As there's still no news of the replacement washing machine part I give thanks for a bathroom with a window so small garments can drip over the bath, and an airy (and sometimes sunny) spare room when they've stopped. For dark clouds and bright sunshine, a streak of pale rainbow and geese flying over the field. They put me in a better mood coming home...
Thursday 26 September 2019
Cuarenta y siete
I give thanks for mostly less pain, and mostly more sleep. For the bit when I woke up this morning and just enjoyed it before the nagging 'need to do' list started reciting itself on my head!
I give thanks for deciding the best way to deal with the many paged WCA form for now is just to fill in the easy boxes like name and address and write a letter to my consultant asking her to write another letter explaining the effects of End Stage Renal Failure and the permanence of this condition until I die of it... or something else. I give great thanks for deciding printing and posting that was quite enough of such business for today as I keep promising myself I will try to do some stuff that does not merely sustain existence but provides a smidge of pleasuto the process.
Thus I give thanks for making myself a naughty but nice cooked brunch, sorting out some stuff for a jumble sale, going into the charity shop I pass on the way to the post box and buying a garment, hobbling round the little green and resting in the sun between that and corner shop and stowing away all benefits paperwork, putting down a protective sheet on the table and dabbing a bit of paint on a few sides of this little shelf.
For savasana as a frequent and lengthy resting position in between these activities, as curled up on my side does horrid things to my back muscles. For Mima getting me some shopping from the Co-op as that is still beyond me
I give thanks for deciding the best way to deal with the many paged WCA form for now is just to fill in the easy boxes like name and address and write a letter to my consultant asking her to write another letter explaining the effects of End Stage Renal Failure and the permanence of this condition until I die of it... or something else. I give great thanks for deciding printing and posting that was quite enough of such business for today as I keep promising myself I will try to do some stuff that does not merely sustain existence but provides a smidge of pleasuto the process.
Thus I give thanks for making myself a naughty but nice cooked brunch, sorting out some stuff for a jumble sale, going into the charity shop I pass on the way to the post box and buying a garment, hobbling round the little green and resting in the sun between that and corner shop and stowing away all benefits paperwork, putting down a protective sheet on the table and dabbing a bit of paint on a few sides of this little shelf.
For savasana as a frequent and lengthy resting position in between these activities, as curled up on my side does horrid things to my back muscles. For Mima getting me some shopping from the Co-op as that is still beyond me
Wednesday 25 September 2019
Cuarenta y seis
Yay, I managed to walk to the post box and back! I give thanks for this progress in mobility, and particularly as I could send off my request for a Mandatory Reconsideration of my PIP assessment. A proof of posting might have been good but it will be some time yet before I could get to a Post Office counter... As my pile of bank statements to query deductions from ESA for savings that don't exist went last week, I was looking forward to a breather from the scrutiny and stress of trying to prove I'm am actually honestly not very well, not a scrounger... but when I got back there was a new Work Capability Assessment form regarding the latter benefit, and if I'd have had the energy I might have lost the plot!
I give thanks as far as I can tell, the fact that I have to have dialysis at the hospital three days a week, still means even strangers at the DWP think possibly my employability might be somewhat limited...though funnily enough there are people I know who still think otherwise, that I must try harder or don't 'deserve' things! The haves can be brutally dismissive of the have nots...but I give thanks I wouldn't wish real suffering on them so they find out what life at the bottom is really like. Long may they live in their blissful bigoted ignorance instead!
I give thanks for lots a lovely leftovers for my tea. You can work up quite an appetite fretting!
I give thanks as far as I can tell, the fact that I have to have dialysis at the hospital three days a week, still means even strangers at the DWP think possibly my employability might be somewhat limited...though funnily enough there are people I know who still think otherwise, that I must try harder or don't 'deserve' things! The haves can be brutally dismissive of the have nots...but I give thanks I wouldn't wish real suffering on them so they find out what life at the bottom is really like. Long may they live in their blissful bigoted ignorance instead!
I give thanks for lots a lovely leftovers for my tea. You can work up quite an appetite fretting!
Tuesday 24 September 2019
Cuarenta y cinco
My back has been very slow to forgive for something seemingly innocuous but clearly too strenuous done yesterday evening so it wasn't an easy night. I was grateful this meant I got to enjoy the two flashes of lightning and one rumble of thunder to go with the torrential rain however, and for getting enough short sleeps not to feel deprived. For a fine excuse for a very slow and unstressed day... Suspecting the damage was carrying things with me as I went up and down the stairs I cut that out completely and stayed indoors improperly dressed. Result!
I give thanks for reminding myself simply looking after one's own small needs may not seem very productive...but it's a whole lot better than needing someone to do it for you. And that there's no shame in that scenario either. For producing some nice things to eat with minimal effort, mostly keeping up with the washing up and for feeding and watering my houseplants too...
For this rose noticed and appreciated several times on the way out of treatment and photographed just before the heavy downpours took their toll.
I give thanks for reminding myself simply looking after one's own small needs may not seem very productive...but it's a whole lot better than needing someone to do it for you. And that there's no shame in that scenario either. For producing some nice things to eat with minimal effort, mostly keeping up with the washing up and for feeding and watering my houseplants too...
For this rose noticed and appreciated several times on the way out of treatment and photographed just before the heavy downpours took their toll.
Monday 23 September 2019
Cuarenta y cuatro
I give thanks for having a hilarious phone conversation this morning with a member of a team at the hospital that deals with rather grim things. Did us both a world of good!
For not getting heavily rained on going to the taxi and unit, and for a really quite pleasant session of treatment, with nice staff and lots of gaps in between. It was also a relief to know that Clive was picking me up afterwards so no transport woes or worries to deal with, and an easy going conversation guaranteed. I give thanks for his great progress in the hallway over the last few days - a detachable cupboard over the unsightly meters, new light fitting up and storage heater gone. It's beginning to look a lot more like the vision I had for it in my head which is really very pleasing. Also very pleasing was the fact that Clive as a coeliac can't have battered fish, and I of course can't have chips. What a tasty and convenient supper we had!
For not getting heavily rained on going to the taxi and unit, and for a really quite pleasant session of treatment, with nice staff and lots of gaps in between. It was also a relief to know that Clive was picking me up afterwards so no transport woes or worries to deal with, and an easy going conversation guaranteed. I give thanks for his great progress in the hallway over the last few days - a detachable cupboard over the unsightly meters, new light fitting up and storage heater gone. It's beginning to look a lot more like the vision I had for it in my head which is really very pleasing. Also very pleasing was the fact that Clive as a coeliac can't have battered fish, and I of course can't have chips. What a tasty and convenient supper we had!
Sunday 22 September 2019
Cuarenta y tres
Wow, I've had more sleep in the last 24 hrs than since I was too ill to notice! I'm very grateful for that. My mental get up and go is virtually non existent right now, and as I'm still not physically capable of much in the way of movement that's fine but it can get a tad monotonous, and slipping into a healing bodily shut down is as good a way to pass the time as any. I give thanks for waking up in the night a few times, but only having to get up to open the window wider, not try to walk away the nasty nocturnal effects of renal failure. And I give thanks for hearing the heavy rain falling too... and for the bright sunshine later in the day.
For Mima bringing me a disparate collection of craved items collected from places over the last few days, and forgetting one so that I had to stir myself and go downstairs to collect it from the roadside after she had collected her car.
I give thanks for all the rugby on TV. Personally I would (literally) far rather watch paint drying, but if it makes anyone as happy as tennis makes me then that's something to be grateful for! For Werner Herzog on Bruce Chatwin on BBC2 instead...images and words, music and memories (for me as well as the narrators)...so moving, beautiful and thought provoking.
For Mima bringing me a disparate collection of craved items collected from places over the last few days, and forgetting one so that I had to stir myself and go downstairs to collect it from the roadside after she had collected her car.
I give thanks for all the rugby on TV. Personally I would (literally) far rather watch paint drying, but if it makes anyone as happy as tennis makes me then that's something to be grateful for! For Werner Herzog on Bruce Chatwin on BBC2 instead...images and words, music and memories (for me as well as the narrators)...so moving, beautiful and thought provoking.
Saturday 21 September 2019
Cuarenta y dos
I give thanks for an unhurried Saturday morning after a nightmarish night, to snooze and put back a few zzzs. At one time (7.30am) I was grateful I couldn't even stir myself to get up to answer the entryphone, but now I've a collect at the delivery office card for the joint cream I need to get to get to the delivery office, of course I wish I had done...
Later in the afternoon I was grateful I pressed the button to let Clive in with his tools, and then to carry them upstairs, for the work he did... and the sneak preview of the work he couldn't quite do today. Earlier I'd managed to go to the cafe and barter for a couple of their frozen gluten free brownies and make use of seats on the way to the cash point so I was able to say thank you in the best of ways.
I'm grateful I had plans for many other things I might do, as it shows the spirit is willing...to plan! In reality it's mostly been a rest day though, as naps and relaxing really did seem the most pressing chore apart from cleaning the kitchen sink washing up and cooking. I give thanks for remembering to track down the unusually interesting looking programme on the overhead TV yesterday. There was no sound or subtitles but it was clearly an episode of Digging for Britain I'd not seen before and it was worth finding out what they were talking about. And for finding some stuff to watch later that appeals to me, instead of the more normal mainstream viewers
Later in the afternoon I was grateful I pressed the button to let Clive in with his tools, and then to carry them upstairs, for the work he did... and the sneak preview of the work he couldn't quite do today. Earlier I'd managed to go to the cafe and barter for a couple of their frozen gluten free brownies and make use of seats on the way to the cash point so I was able to say thank you in the best of ways.
I'm grateful I had plans for many other things I might do, as it shows the spirit is willing...to plan! In reality it's mostly been a rest day though, as naps and relaxing really did seem the most pressing chore apart from cleaning the kitchen sink washing up and cooking. I give thanks for remembering to track down the unusually interesting looking programme on the overhead TV yesterday. There was no sound or subtitles but it was clearly an episode of Digging for Britain I'd not seen before and it was worth finding out what they were talking about. And for finding some stuff to watch later that appeals to me, instead of the more normal mainstream viewers
Friday 20 September 2019
Cuarenta y uno
Last day of summer I think today...and the strong wind has been busily blowing it away. I give thanks for watching the wavy waves from my window as the tide came in this morning. For the wavy trees beside the road on my way to hospital.
I give thanks for my project for today which is to try to be nicer to people. For the most part they are not deliberately contributing to my problems or hindering the solutions...and if they seem to be unnecessarily adding to the burdens, like the staff on the unit with toe-curlingly patronising patter, or an obsession with small inconsequential rules, it's probably best to try to be compassionate as people with so little empathy and awareness sure do need it!
As it was pretty bad day at the office with patients, staff and machines all falling foul of some jinx, I needed all the patience and understanding I could muster so the above came in very handy. I wasn't immune, so I was very grateful when a major error in setting me up for treatment had been rectified I was told I'd still finish in time for my usual transport pick up. Then someone (see above) they'd just tweak that taxi by ten minutes, which somehow got interpreted as two hours and ten minutes, and as we're not allowed to put in a request for a 'chase' until half an hour after the cab is supposed to arrive, and when a replacement was sent the driver forgot what road to go down to get to the town I live in...I was a generous hour late getting home. My goodness I was grateful I packed a hearty lunch!
I was grateful I managed to brave the by now raging wind and cross the road to the corner shop for a pint of milk - unsteady progress is being made! For deciding to treat myself to a naughty but nice frozen tea...and then realising I had dipped into my hospital purse (along with all other sources of dosh) so many times to pay back folk who have done shopping I didn't have enough dosh. I'm sure I'll feel all the better for doing without - not!
I was most grateful of all for finding out the extremely invasive, inconvenient and unnecessary procedure I was booked in for without any information or consent was an administrative mistake and I'm not! I'd been fretting my socks off over that, and ringing round trying to get answers so I must give thanks at least I am on the ball! Goodness only knows what might have happened otherwise...they might have gone ahead!
I give thanks for Jo managing to get the meds from the pharmacy they omitted to give Jenny earlier in the week and post them through my door. Tomorrow I hope to make it to the cash machine but the chemist is still too far!
I give thanks for my project for today which is to try to be nicer to people. For the most part they are not deliberately contributing to my problems or hindering the solutions...and if they seem to be unnecessarily adding to the burdens, like the staff on the unit with toe-curlingly patronising patter, or an obsession with small inconsequential rules, it's probably best to try to be compassionate as people with so little empathy and awareness sure do need it!
As it was pretty bad day at the office with patients, staff and machines all falling foul of some jinx, I needed all the patience and understanding I could muster so the above came in very handy. I wasn't immune, so I was very grateful when a major error in setting me up for treatment had been rectified I was told I'd still finish in time for my usual transport pick up. Then someone (see above) they'd just tweak that taxi by ten minutes, which somehow got interpreted as two hours and ten minutes, and as we're not allowed to put in a request for a 'chase' until half an hour after the cab is supposed to arrive, and when a replacement was sent the driver forgot what road to go down to get to the town I live in...I was a generous hour late getting home. My goodness I was grateful I packed a hearty lunch!
I was grateful I managed to brave the by now raging wind and cross the road to the corner shop for a pint of milk - unsteady progress is being made! For deciding to treat myself to a naughty but nice frozen tea...and then realising I had dipped into my hospital purse (along with all other sources of dosh) so many times to pay back folk who have done shopping I didn't have enough dosh. I'm sure I'll feel all the better for doing without - not!
I was most grateful of all for finding out the extremely invasive, inconvenient and unnecessary procedure I was booked in for without any information or consent was an administrative mistake and I'm not! I'd been fretting my socks off over that, and ringing round trying to get answers so I must give thanks at least I am on the ball! Goodness only knows what might have happened otherwise...they might have gone ahead!
I give thanks for Jo managing to get the meds from the pharmacy they omitted to give Jenny earlier in the week and post them through my door. Tomorrow I hope to make it to the cash machine but the chemist is still too far!
Thursday 19 September 2019
Cuarenta
My main request from the acupuncture was to feel more relaxed, and I give thanks that certainly worked. There is so much I have to deal with just now, and it's understandable I'm finding it hard...but it would be a whole lot easier to through it if I wasn't so anxious and stressed. I give thanks for sleeping a little better, being in less pain when I woke, and after a few chores and a light second breakfast going back to bed for a second sleep - before having generally having a very mellow day.
I give thanks for my back being less painful and being able to move more easily. For finishing one of my benefit 'queries' and doing some work on the other. For Julie and Spencer collecting a Tesco order I'd clicked! For trying once again to make my Google profile photo appear on blog posts that don't have any added images. It used to happen automatically but now can only be manually added every time...which of course isn't going to happen!
Wednesday 18 September 2019
Treinta y nueve
I give thanks for falling asleep in the taxi coming home... with the pain keeping me awake for so much of the night, and the nightmare of trying to keep nodding and smiling on a treatment day, I honestly think that was the best bit of the last twenty four hours.
I give thanks for knowing it was warm and sunny again though I was in a shady and very cool part of the unit and spent much of the afternoon shivering despite layers of blankets weighing me down.
For thinking I was on the same surgical songsheet as the people looking after me, and then receiving a letter that confused and worried me way too much. For querying it...and being too tired to care when I got nowhere. I'll put it on the ever growing to do list for tomorrow.
I give thanks I made something for tea ages ago (and froze it) as Rachel is coming later and has offered to help with chores. I do need to sort out some accompaniments though. I give thanks for remembering a small secret stash of nice teabags as there seems to be a pre - Brexit drought.
I give thanks for knowing it was warm and sunny again though I was in a shady and very cool part of the unit and spent much of the afternoon shivering despite layers of blankets weighing me down.
For thinking I was on the same surgical songsheet as the people looking after me, and then receiving a letter that confused and worried me way too much. For querying it...and being too tired to care when I got nowhere. I'll put it on the ever growing to do list for tomorrow.
I give thanks I made something for tea ages ago (and froze it) as Rachel is coming later and has offered to help with chores. I do need to sort out some accompaniments though. I give thanks for remembering a small secret stash of nice teabags as there seems to be a pre - Brexit drought.
Tuesday 17 September 2019
Treinta y ocho
I give thanks for my shower. I miss having baths but I'm scared at the moment if I got in I wouldn't get out! I did brave lying on the sofa for a while last night, but very nearly had to get the orange army to come inland with their mobile crane and rescue me! I give thanks for how much I enjoy watching their endeavours in the night. It cheers up dark sleepless hours of pain no end!
I give thanks for catching up with a documentary about a trans man who still had all the right bits and stopped taking testosterone to become able to have a baby. There are lots of people who have a lot to say about this kind of subject matter, but leaving aside the moral mountains we like to imagine ourselves atop of, I am perpetually fascinated by how the role of certain hormones in shaping 'masculine' and 'feminine' is revealed. I'm not talking about physical characteristics but the perception and processing of emotions, engagement, endurance etc - those aspects of 'other' gender that often perplex us may just be chemical reactions.
I give thanks for the bits when I was fairly mobile today and able to do a few useful things. It's all pretty tedious stuff, printing piles of bank statements for the part of the DWP that insists I'm too rich, beginning a carefully worded refutal of the assessment of another that I am too well, while trying to keep on top of the simplest self care. I was grateful for Jenny saying she'd pick up some prescriptions for me from Boots and even more so for thinking to meet her almost on my doorstep at the nice little cafe a few steps away. It was great to feel I was having a bit of a life still, and enjoy the sun on my skin...even though Jenny would have preferred to have been in shade herself, bless her. Luckily, despite the gorgeous weather the main season is over and there were lots of seats to be had so we could move around. And I give thanks for a gift of cake as well, as she had an excess at home and knew I'd been advised to fill up by the docs...
I give thanks for catching up with a documentary about a trans man who still had all the right bits and stopped taking testosterone to become able to have a baby. There are lots of people who have a lot to say about this kind of subject matter, but leaving aside the moral mountains we like to imagine ourselves atop of, I am perpetually fascinated by how the role of certain hormones in shaping 'masculine' and 'feminine' is revealed. I'm not talking about physical characteristics but the perception and processing of emotions, engagement, endurance etc - those aspects of 'other' gender that often perplex us may just be chemical reactions.
I give thanks for the bits when I was fairly mobile today and able to do a few useful things. It's all pretty tedious stuff, printing piles of bank statements for the part of the DWP that insists I'm too rich, beginning a carefully worded refutal of the assessment of another that I am too well, while trying to keep on top of the simplest self care. I was grateful for Jenny saying she'd pick up some prescriptions for me from Boots and even more so for thinking to meet her almost on my doorstep at the nice little cafe a few steps away. It was great to feel I was having a bit of a life still, and enjoy the sun on my skin...even though Jenny would have preferred to have been in shade herself, bless her. Luckily, despite the gorgeous weather the main season is over and there were lots of seats to be had so we could move around. And I give thanks for a gift of cake as well, as she had an excess at home and knew I'd been advised to fill up by the docs...
Monday 16 September 2019
Treinta y siete
I give thanks the muscles in my back are getting kinder in the day, but ooh they can be cruel in the night! For somehow getting myself together to go to the hospital today despite being so bleary eyed.
For one of my favourite taxi drivers to take me in for treatment today - the autistic chap who blissfully requires no complicated social niceties from me, and who completely understands that the most horrific thing about dialysis is often the enforced interaction when you really are not in the mood.
For downloading some entertainment as I couldn't get the internet, and a visit from Sarah the research nurse who sometimes pops to see me even if she has no clinical trial business to discuss but just because it's rather nice to chat to each other about this and that
For the driver home accepting with good grace that I'd rather clench my teeth for the discomfort of the journey than make small talk. He said he knew all about bad backs! For a patch of cyclamen in a hedgerow, and one of the day's rare rays of sunshine making a dazzling display of a row of cars at a small roadside dealership.
For one of my favourite taxi drivers to take me in for treatment today - the autistic chap who blissfully requires no complicated social niceties from me, and who completely understands that the most horrific thing about dialysis is often the enforced interaction when you really are not in the mood.
For downloading some entertainment as I couldn't get the internet, and a visit from Sarah the research nurse who sometimes pops to see me even if she has no clinical trial business to discuss but just because it's rather nice to chat to each other about this and that
For the driver home accepting with good grace that I'd rather clench my teeth for the discomfort of the journey than make small talk. He said he knew all about bad backs! For a patch of cyclamen in a hedgerow, and one of the day's rare rays of sunshine making a dazzling display of a row of cars at a small roadside dealership.
Sunday 15 September 2019
Treinta y seis
Oh what a beautiful day again! I give thanks for all the people having extra fun in the sun. After a bad night, and an incredibly slow moving morning, I was grateful just to be able to finally make it to the chair in the window and watch a few of them...
I give thanks for managing to put a load of washing on myself - big excitement, though I still need help hanging it up afterwards so I was particularly grateful that I timed things so that the cycle ended when Julie was here. And doubly so when we realised the drainage pipe from the machine had been leaking all over the kitchen floor, so she could help me sort that out too! Well, let's be realistic - I had a very minor role in any sorting out there, just providing mopping up cloths and encouragement... I did clear the decks on the big table so she could move my printer from grovel on knees level to make it easier to scan documents, write letters etc about all the matters needing attending to, and managed to make a small start on that. I also made myself a large omelette to last a couple of meals so all in all I've been quite grateful for my bursts of productivity today.
The main reason Julie was here was that she had volunteered to work on some unfinished painting in the hall...where I fatefully gathered materials for the task before going to treatment on the last Friday in August thinking I'd whip it into shape when I got back afterwards! So nice to see some improvements to the home improving again.
I give thanks for having vegan cake to offer her following Mima's visit to Beth's charity Pilates event, and for Jo bringing me back not just a ready meal but a Marks and Spencer's ready meal after a shopping trip!
I give thanks for managing to put a load of washing on myself - big excitement, though I still need help hanging it up afterwards so I was particularly grateful that I timed things so that the cycle ended when Julie was here. And doubly so when we realised the drainage pipe from the machine had been leaking all over the kitchen floor, so she could help me sort that out too! Well, let's be realistic - I had a very minor role in any sorting out there, just providing mopping up cloths and encouragement... I did clear the decks on the big table so she could move my printer from grovel on knees level to make it easier to scan documents, write letters etc about all the matters needing attending to, and managed to make a small start on that. I also made myself a large omelette to last a couple of meals so all in all I've been quite grateful for my bursts of productivity today.
The main reason Julie was here was that she had volunteered to work on some unfinished painting in the hall...where I fatefully gathered materials for the task before going to treatment on the last Friday in August thinking I'd whip it into shape when I got back afterwards! So nice to see some improvements to the home improving again.
I give thanks for having vegan cake to offer her following Mima's visit to Beth's charity Pilates event, and for Jo bringing me back not just a ready meal but a Marks and Spencer's ready meal after a shopping trip!
Saturday 14 September 2019
Treinta y cinco
I give thanks for succumbing to the lure of my only frozen ready meal for supper last night - my appetite is returning but not the back strength to keep on top of food prep and cleaning up. For a late night pace when the pain was getting merciless, watching the big moon lighting up the sea and a giant digger trying to build a wall to hide it!
I give thanks for a better night's sleep in the end than I have had for a while. For waking up comfy...until I moved. For not having to get ready for dialysis so I could just slowly get washed and dressed and fed and so on. For William delivering a bag of shopping, flowers and a card and gift from Liz. How helpful and kind!
I give thanks it's getting a little easier to manage my day to day care, but though I have numerous other pressing matters requiring any spare energy, after more than three largely sunny weeks largely incarcerated I was desperate to eat an ice cream in the sunshine. To have a tree over my head not a ceiling.
For Mima facilitating this later...and also driving me around to break into a some notes as all this paying people back for groceries means I'm flat out of any useful change. For moving around more today than I've done since all this began...and though I'm in more pain in the aftermath than I have been so far, that it's still not as bad as the worst of it was.
I give thanks for a better night's sleep in the end than I have had for a while. For waking up comfy...until I moved. For not having to get ready for dialysis so I could just slowly get washed and dressed and fed and so on. For William delivering a bag of shopping, flowers and a card and gift from Liz. How helpful and kind!
I give thanks it's getting a little easier to manage my day to day care, but though I have numerous other pressing matters requiring any spare energy, after more than three largely sunny weeks largely incarcerated I was desperate to eat an ice cream in the sunshine. To have a tree over my head not a ceiling.
For Mima facilitating this later...and also driving me around to break into a some notes as all this paying people back for groceries means I'm flat out of any useful change. For moving around more today than I've done since all this began...and though I'm in more pain in the aftermath than I have been so far, that it's still not as bad as the worst of it was.
Friday 13 September 2019
Treinta y cuatro
I give thanks for the beauty of the route to the hospital, especially for all the trees there are to admire, some changing colour now. This morning I heard that the DWP have determined I have no mobility problems whatsoever and will be ceasing all related benefits, including my bus pass, so this to-ing and fro-ing for treatment may well be the only chance I get to see the countryside around here and I must learn to appreciate it more. I also give thanks that though the reduced funds and increased fares will hit me hard if I'm lucky enough to have a good day and want to go somewhere, the reality of the foreseeable future is that I wouldn't be able to get to a bus stop and climb aboard anyway. Alanis Morissette? Bless her, she had no idea at all really did she?
I give thanks for writing that earlier and then treating myself to a musical journey through my misspent middle age, flat on my back with my headphones on and little tears trickling down from the corners of my eyes. The last few weeks have left me a wizened and twisted old lady, losing hair and losing hope but somewhere inside there's a tiny bit of spirit left...so I gave thanks for remembering that.
I give thanks for the glorious weather, and managing a few minutes out in it waiting for the taxi to come. There didn't seem to be any breeze but for some reason some planes were flying low past my ward window on their way in to land, so I was grateful for that distraction in a rather trying session.
I give thanks for being home. There are so many hard things to come to terms with just now, just some space to deal with them quietly in my own way is very welcome. I have had a question running round my head since yesterday though, and I was very grateful for a phone call this morning from someone who could explain.
I give thanks for writing that earlier and then treating myself to a musical journey through my misspent middle age, flat on my back with my headphones on and little tears trickling down from the corners of my eyes. The last few weeks have left me a wizened and twisted old lady, losing hair and losing hope but somewhere inside there's a tiny bit of spirit left...so I gave thanks for remembering that.
I give thanks for the glorious weather, and managing a few minutes out in it waiting for the taxi to come. There didn't seem to be any breeze but for some reason some planes were flying low past my ward window on their way in to land, so I was grateful for that distraction in a rather trying session.
I give thanks for being home. There are so many hard things to come to terms with just now, just some space to deal with them quietly in my own way is very welcome. I have had a question running round my head since yesterday though, and I was very grateful for a phone call this morning from someone who could explain.
Thursday 12 September 2019
Treinta y tres
I give thanks for being up and about for longer during the last twenty four hours and achieving a little bit more. I even washed up a few bits of crockery and cutlery while waiting for my poached egg to cook last night. This was around 11 pm,..and yes I know if you eat late you're more likely to put on weight, but in my case that's the idea and I did really fancy one on toast! Bending down to the bottom parts of cupboards is not a good plan late at night either as there's likely to be a wrenching pain somewhere I wouldn't want to take to bed with me. But I did manage to get out a pan and cook one the old fashioned way, and surprisingly well for the poor poacher that I am. I give thanks for eating most of it too... still got to build that appetite up...
I give thanks for a mostly duvet day today, in between little forays into domestic life. For a timely visit from Julie and Spencer to help with chores I still find beyond me like popping to the shop and getting a load of laundry done. Spencer's washing machine fixation came in handy there, and his mum and I were both impressed with his handling of a list of things to deliver and fetch, even choosing suitable substitutes when the items I asked for in the Co op weren't there. Meanwhile on the milder end of the spectrum it's always a relief to talk to someone else who finds the majority of social interaction a minefield of mysteries! I give thanks for a scone with jam and cream to pile on a few more gs and a long nap after to catch up on zs...
I give thanks for a mostly duvet day today, in between little forays into domestic life. For a timely visit from Julie and Spencer to help with chores I still find beyond me like popping to the shop and getting a load of laundry done. Spencer's washing machine fixation came in handy there, and his mum and I were both impressed with his handling of a list of things to deliver and fetch, even choosing suitable substitutes when the items I asked for in the Co op weren't there. Meanwhile on the milder end of the spectrum it's always a relief to talk to someone else who finds the majority of social interaction a minefield of mysteries! I give thanks for a scone with jam and cream to pile on a few more gs and a long nap after to catch up on zs...
Wednesday 11 September 2019
Treinta y dos
So yesterday was the tenth anniversary of the first anniversary of being diagnosed with cancer, when I met a few friends on the beach for fish and chips and to watch a stunning sunset up river. I give thanks for the memory...
I'd hoped it might become a regular thing (well you would wouldn't you?) but over estimated folks' interest in my continuing survival so it never actually happened again, though Clive once met me for a sit down fish supper instead, bless him. I give thanks for always quietly marking the occasion in some way though, with a little journey or treat, even if it's just inside my head. Usually I congratulate myself on how far I've come... but this time, well I felt such a wreck and as if I'm going backwards and it didn't cross my mind. I did give thanks for Jenny reminding me she sees me as strong and able to recover from things though, when she saw the state I was in. And for pretty little sunset clouds marbling the sky later on.
Later I gave thanks for some snatches of sleep, and for waking up rather pleasantly almost pain free, though I still groaned when I remembered I couldn't lie there and enjoy it but had to begin the slow processes of getting ready to go for dialysis. I give thanks for discovering, waiting for a late taxi that standing is a very bad idea... and that the chairs in the waiting room in the unit are very bad for bad backs indeed. I was very grateful for managing to get quite comfy in the treatment chair though so that I was quite sprightly when compared to how I clambered into it!
I give thanks for being home alone. It's blooming hard when you can't do the things you need to do to make yourself comfy, but at least you can get some important thinking done...
I'd hoped it might become a regular thing (well you would wouldn't you?) but over estimated folks' interest in my continuing survival so it never actually happened again, though Clive once met me for a sit down fish supper instead, bless him. I give thanks for always quietly marking the occasion in some way though, with a little journey or treat, even if it's just inside my head. Usually I congratulate myself on how far I've come... but this time, well I felt such a wreck and as if I'm going backwards and it didn't cross my mind. I did give thanks for Jenny reminding me she sees me as strong and able to recover from things though, when she saw the state I was in. And for pretty little sunset clouds marbling the sky later on.
Later I gave thanks for some snatches of sleep, and for waking up rather pleasantly almost pain free, though I still groaned when I remembered I couldn't lie there and enjoy it but had to begin the slow processes of getting ready to go for dialysis. I give thanks for discovering, waiting for a late taxi that standing is a very bad idea... and that the chairs in the waiting room in the unit are very bad for bad backs indeed. I was very grateful for managing to get quite comfy in the treatment chair though so that I was quite sprightly when compared to how I clambered into it!
I give thanks for being home alone. It's blooming hard when you can't do the things you need to do to make yourself comfy, but at least you can get some important thinking done...
Tuesday 10 September 2019
Treinta y uno
I forgot to say thanks for the rain yesterday
Wow, wasn't it awesome? OK, I was scrunched in an armchair wondering how hard it would be to get down the stairs and into a taxi not out in it trying to drive or walk or ride a bike but I'd have happily swapped if I could!
I give thanks for this reminder of all the wonderful projects achieved through this programme. Haha, not the dancing one... I'm well aware many folk think that one has its charms but they're mostly lost on me...
https://www.bbc.co.uk/news/uk-england-49501992
I give thanks for continuing to hope the Social Care Reablement Scheme turns out to be useful to some people struggling to look after themselves after a hospital stay as they say on the website. After many more phone calls today though, I've been told a) that it sounded as if I needed permanent help and b) I couldn't have it if I did. Now that upset me on both counts, as it had never crossed my mind that this might be a permanent state of inability. But when they said, oh and we don't actually do things for people - we find ways to support them to do them themselves I began to lose the plot. So for instance, if you can't go shopping we'll encourage you to do it online, I was advised. And the cleaning, you mention I asked. Oh no, they don't actually do the cleaning for you! So they're just going to stand over me and say try harder, hurt yourself more! Or encourage me to use air freshener to mask the smell. Really? So what's the point? For someone in an office to kid themselves they're doing something worthwhile while stacking up their pension? No, thanks, I'll just try harder and hurt myself more without your intervention thanks. I am, of course, grateful that due to its failings the scheme is somehow still re-abling me... gotta love a bit of irony haven't you?
I'm even more grateful however for a visit from Jenny, bringing me some non online shopping in her lunch break, along with a bunch of flowers, good company...and a pair of willing hands to tackle the mound of washing up. Last night I slept very badly but I gave thanks for a lovely snooze after she'd gone
Wow, wasn't it awesome? OK, I was scrunched in an armchair wondering how hard it would be to get down the stairs and into a taxi not out in it trying to drive or walk or ride a bike but I'd have happily swapped if I could!
I give thanks for this reminder of all the wonderful projects achieved through this programme. Haha, not the dancing one... I'm well aware many folk think that one has its charms but they're mostly lost on me...
https://www.bbc.co.uk/news/uk-england-49501992
I give thanks for continuing to hope the Social Care Reablement Scheme turns out to be useful to some people struggling to look after themselves after a hospital stay as they say on the website. After many more phone calls today though, I've been told a) that it sounded as if I needed permanent help and b) I couldn't have it if I did. Now that upset me on both counts, as it had never crossed my mind that this might be a permanent state of inability. But when they said, oh and we don't actually do things for people - we find ways to support them to do them themselves I began to lose the plot. So for instance, if you can't go shopping we'll encourage you to do it online, I was advised. And the cleaning, you mention I asked. Oh no, they don't actually do the cleaning for you! So they're just going to stand over me and say try harder, hurt yourself more! Or encourage me to use air freshener to mask the smell. Really? So what's the point? For someone in an office to kid themselves they're doing something worthwhile while stacking up their pension? No, thanks, I'll just try harder and hurt myself more without your intervention thanks. I am, of course, grateful that due to its failings the scheme is somehow still re-abling me... gotta love a bit of irony haven't you?
I'm even more grateful however for a visit from Jenny, bringing me some non online shopping in her lunch break, along with a bunch of flowers, good company...and a pair of willing hands to tackle the mound of washing up. Last night I slept very badly but I gave thanks for a lovely snooze after she'd gone
Monday 9 September 2019
Treinta
I give thanks for sleeping a bit more last night, later would have been better still but there were a number of non negotiable processes to be negotiated, with necessary resting in between, before I was ready to be picked up for dialysis today. Unfortunately there was a mix up in reinstating the transport though, and despite being informed that the taxi was just delayed in the torrential rain, it actually wasn't coming at all. I was quite grateful when I found out as I could stop sitting up in the chair poised for departure and go and lie down on the bed for a rest instead!
The other pressing task of the day was to see how to get the temporary free help available to people who come home from hospital and can't manage as advertised on the local county website. Cooking, cleaning, shopping, personal care...you name it and they'll sort you out for up to six weeks they say. First person I spoke to on the number said no such service existed, second person said it had to be arranged via the hospital who had discharged you. Two people at the hospital said they'd get back to me and didn't, third person said ring GP. My mobile kept losing signal so after about eight cut offs I have up but a member of staff lent me the ward phone and I got through and was told the doc would make a referral. He phoned later, the signal kept dropping out but he gave me a number to ring...the one I started out with this morning!
I give thanks for perseverance, for a dark sense of humour. For the bit when you get in your door and don't have to be nice any more. I give thanks though my back is beginning to rage after all it's been through today, my hunger has won and I've managed to put leftovers and bits together to quickly eat before I have to lie down
The other pressing task of the day was to see how to get the temporary free help available to people who come home from hospital and can't manage as advertised on the local county website. Cooking, cleaning, shopping, personal care...you name it and they'll sort you out for up to six weeks they say. First person I spoke to on the number said no such service existed, second person said it had to be arranged via the hospital who had discharged you. Two people at the hospital said they'd get back to me and didn't, third person said ring GP. My mobile kept losing signal so after about eight cut offs I have up but a member of staff lent me the ward phone and I got through and was told the doc would make a referral. He phoned later, the signal kept dropping out but he gave me a number to ring...the one I started out with this morning!
I give thanks for perseverance, for a dark sense of humour. For the bit when you get in your door and don't have to be nice any more. I give thanks though my back is beginning to rage after all it's been through today, my hunger has won and I've managed to put leftovers and bits together to quickly eat before I have to lie down
Sunday 8 September 2019
Veintinueve
Phew, that was a tough night! I give thanks for trying to get better at relaxing into the pain, and also - as the only pain relief I have is paracetamol - for learning to get better at going longer between doses so there's one left for the small hours when it feels as if it will never ease off enough to let me get to sleep.
I give thanks for eventually getting a few hours unconsciousness, and a couple more after I awoke when I was comfortable lying still...though of course also terrified to move! I give thanks for John and Jo being so kind and helpful in so many ways, this morning bringing me tea and toast in bed to encourage me to take the take the plunge and change position.
Later I gave thanks they took me out for lunch, or rather took me out and then accepted my offer of treating us all to say thank you. I'm gradually doing a little more moving around, but it's very tiring and requires lots of taking it easy in between stages, so I'm grateful for recognising the importance of putting the effort into doing something for pleasure, in the midst of this patch where most revolves around little more than survival. I give thanks for nice weather and delicious food, though the benches did evil things to my back and caused some considerable regret in that department.
I give thanks for the karaoke crowd being a bit louder than I would have preferred, as this helps stop me drifting too deeply into sleep as I take some time out in bed ready for the challenges of getting some supper, getting as ready as possible for a treatment day tomorrow, and getting ready for bed.
I give thanks for eventually getting a few hours unconsciousness, and a couple more after I awoke when I was comfortable lying still...though of course also terrified to move! I give thanks for John and Jo being so kind and helpful in so many ways, this morning bringing me tea and toast in bed to encourage me to take the take the plunge and change position.
Later I gave thanks they took me out for lunch, or rather took me out and then accepted my offer of treating us all to say thank you. I'm gradually doing a little more moving around, but it's very tiring and requires lots of taking it easy in between stages, so I'm grateful for recognising the importance of putting the effort into doing something for pleasure, in the midst of this patch where most revolves around little more than survival. I give thanks for nice weather and delicious food, though the benches did evil things to my back and caused some considerable regret in that department.
I give thanks for the karaoke crowd being a bit louder than I would have preferred, as this helps stop me drifting too deeply into sleep as I take some time out in bed ready for the challenges of getting some supper, getting as ready as possible for a treatment day tomorrow, and getting ready for bed.
Saturday 7 September 2019
Veintiocho
Ouch! I give thanks, though this is much harder than I thought it would be, most of the time I feel as if I'm very s-l-o-w-l-y creeping back to being able to look after myself in basic ways. Although it's my spine that gives the specialists concern, it's the muscles in my back that worry me as they are still so delicate and tender. It's hard to tell when trying a bit harder is the thing to do or when it's best to stop, so I give thanks for when I seem to have got it right. I give thanks for Jo being here on standby so I felt safe having my first shower for longer than I would have thought it was possible to go without! Maybe tomorrow I might try a bath...
For she and John making yummy pan of stew with multiple vegetables, a few lentils and some quorn which was just what my body required. For bringing Danish pastries...and washing up...and hanging up clean laundry ready to dry...and moving loads of furniture to strip lots of woodchip off ready for an insulating layer before winter time sets in. How lucky I am to have such versatile and helpful friends!
I give thanks for seeing the sea again, in all its moods and colours. For ships and boats and trains. For a glimpse of the moon before turning in last night...and watching clouds and sunshine pass.
For she and John making yummy pan of stew with multiple vegetables, a few lentils and some quorn which was just what my body required. For bringing Danish pastries...and washing up...and hanging up clean laundry ready to dry...and moving loads of furniture to strip lots of woodchip off ready for an insulating layer before winter time sets in. How lucky I am to have such versatile and helpful friends!
I give thanks for seeing the sea again, in all its moods and colours. For ships and boats and trains. For a glimpse of the moon before turning in last night...and watching clouds and sunshine pass.
Friday 6 September 2019
Veintisiete
I give thanks for being in my bed. Last time I was here it was a place of considerable trauma so I give thanks for it feeling so calm and warm and kind. To Mima for making it with fresh linen which certainly helped with that, and for other light domestic duties to make up for me being so long out of action.
I give thanks for her collecting me from hospital and bringing me and all my baggage back. And, though my legs felt like lead, for making it up the stairs. For feeling confident that gradually my strength will return, though it is going to be quite a long while yet. I'm still in a bit of shock over quite how I ill I was, and give thanks, though it seems ages since I was well, for the fact that actually, medically, this is astonishingly soon to be pottering about in my kitchen getting crumpets and a mug of tea, albeit with lots of wincing and groaning as I do, as my back reminds me to be very gentle.
I said I needed to remember where I was before all this happened, and it was quite strange to see so many tasks abandoned as you might on a Friday night with a weekend ahead to progress. Of course if I know I'm going to be away from home I leave everything so smart and just so, And I give thanks for the timely reminders that we never know... like the poignant pile of 'getting ready for my holiday' stuff as last week I planned to give myself a much needed treat, not get lots of much needed treatment. Ah well, what will be will be, and what won't be won't, and there's nothing we can do about it but to try to live and learn.
I give thanks for her collecting me from hospital and bringing me and all my baggage back. And, though my legs felt like lead, for making it up the stairs. For feeling confident that gradually my strength will return, though it is going to be quite a long while yet. I'm still in a bit of shock over quite how I ill I was, and give thanks, though it seems ages since I was well, for the fact that actually, medically, this is astonishingly soon to be pottering about in my kitchen getting crumpets and a mug of tea, albeit with lots of wincing and groaning as I do, as my back reminds me to be very gentle.
I said I needed to remember where I was before all this happened, and it was quite strange to see so many tasks abandoned as you might on a Friday night with a weekend ahead to progress. Of course if I know I'm going to be away from home I leave everything so smart and just so, And I give thanks for the timely reminders that we never know... like the poignant pile of 'getting ready for my holiday' stuff as last week I planned to give myself a much needed treat, not get lots of much needed treatment. Ah well, what will be will be, and what won't be won't, and there's nothing we can do about it but to try to live and learn.
Thursday 5 September 2019
Veintiseis
Oh my goodness that was an unusually pleasant dialysis session I had last night. I had hoped it wouldn't be quite so late in the day, but as it was the unit was almost empty which made it much more restful than a busy ward. I gave great thanks for my Cauldron sausage wholemeal roll with fried onions and chutney brought in by Rachel for my supper, and that as the evening tea round was so minimal Rita made us fresh tea in proper China mugs each (even Rachel!) Oh what a lovely treat! She also also Tangle Teasered the matted knots out of my hair and we enjoyed on of the special talks we do rarely get a chance to have with other people. I give thanks for my sister in spirit!
Though I had a hard night with lots of pain, the uncomfortable bed and the horribly restricted feeling of being on a shared ward in a hospital rather than your own home where you can put the light on or get up and potter instead I was grateful I felt no more than stiff and sore (and somewhat grumpy) in the morning. They seemed a bit short of staff for domestic duties and help with personal care today so most of us were still quite dishevelled when a full team of doctors came to do the rounds...and I was horrified to see it was dinosaur man at the helm! I'd found out who he was and apparently his behaviour earlier this week is the norm but bizarrely he seemed to have had a personality change overnight and was actually quite pleasant. He also had very pleasant news which helped - all the horrifyingly high things in my blood had mysteriously returned to normal, which they would not have expected after such minimal treatment to say nothing of not not finding out what it was. and though there was still an 'area' in my spine it wasn't the kind of area we'd all been worried about!
I give thanks for being given the choice of going home or staying in for further investigation. Obviously I choice the former... But decided to opt for tomorrow after dialysis so I can have a proper weekend at home before coming back for normal treatment. I give thanks for for Jo bringing me tea time treats so I didn't have to eat the normal food. Ooh and I've something lush for breakfast...if I manage not to eat it all for supper instead!
Though I had a hard night with lots of pain, the uncomfortable bed and the horribly restricted feeling of being on a shared ward in a hospital rather than your own home where you can put the light on or get up and potter instead I was grateful I felt no more than stiff and sore (and somewhat grumpy) in the morning. They seemed a bit short of staff for domestic duties and help with personal care today so most of us were still quite dishevelled when a full team of doctors came to do the rounds...and I was horrified to see it was dinosaur man at the helm! I'd found out who he was and apparently his behaviour earlier this week is the norm but bizarrely he seemed to have had a personality change overnight and was actually quite pleasant. He also had very pleasant news which helped - all the horrifyingly high things in my blood had mysteriously returned to normal, which they would not have expected after such minimal treatment to say nothing of not not finding out what it was. and though there was still an 'area' in my spine it wasn't the kind of area we'd all been worried about!
I give thanks for being given the choice of going home or staying in for further investigation. Obviously I choice the former... But decided to opt for tomorrow after dialysis so I can have a proper weekend at home before coming back for normal treatment. I give thanks for for Jo bringing me tea time treats so I didn't have to eat the normal food. Ooh and I've something lush for breakfast...if I manage not to eat it all for supper instead!
Wednesday 4 September 2019
Veinticinco
Study the traits of human nature exhibited all around; reflect on your own habits and ways in the light of your learning; practice improvement; practice compassion. This is the order of my day and night and I give thanks what a consuming study it is...otherwise I might lapse into unworthy or unkind thoughts more often I suspect!
I give thanks for Netflix and catch up TV also (Wow what those Devon and Cornwall police have to put up with!) Oh, and catch up snoozes too! For quickly spotting the kind of patient who asks you a seemingly innocent question, to which you make a brief factual (but hopefully friendly) reply, thereby giving them the chance to respond 'Well, I...' and launch into the lengthy summary of physical complaints and emotional grievances you've already heard them tell at least three other people in the last hour or two! I'm never sure why they do this or what sounds you're supposed to make in reply? Interest? But what if they think you want to hear more? Respect that they have tolerated such inhumane or unsuitable treatment. Um...There are worse things than waiting for diagnosis..
or nil by mouth! Commiseration? A bit maybe, but when they're really complaining that the overstretched hospital staff are failing to put their needs above all others... that's not going to happen is it? Especially if they're well enough to be moaning about it! Oh goodness me I give thanks that this is a gratitude blog and I've remembered to stop moaning about it all myself!
I give thanks sometimes partners, family and carers aren't always arrogant, insensitive and indignant if told they too must obey the hospital rules, or accept that staff too may have some relevant knowledge and skills... Where is a good stuff starched matron when you need one eh?
For the very different husband of a stoma patient kindly steering the specialist nurse to me when she'd finished with his wife so I could blag some dry wipes. Nothing else quite does the job they do!
I give thanks after waiting all day I've finally been told my dialysis will start at 5pm. This is a great shame as I won't be able to eat or greet Rachel properly if she manages to make it, but at least I'll get a change of scene and position.
I give thanks for Netflix and catch up TV also (Wow what those Devon and Cornwall police have to put up with!) Oh, and catch up snoozes too! For quickly spotting the kind of patient who asks you a seemingly innocent question, to which you make a brief factual (but hopefully friendly) reply, thereby giving them the chance to respond 'Well, I...' and launch into the lengthy summary of physical complaints and emotional grievances you've already heard them tell at least three other people in the last hour or two! I'm never sure why they do this or what sounds you're supposed to make in reply? Interest? But what if they think you want to hear more? Respect that they have tolerated such inhumane or unsuitable treatment. Um...There are worse things than waiting for diagnosis..
or nil by mouth! Commiseration? A bit maybe, but when they're really complaining that the overstretched hospital staff are failing to put their needs above all others... that's not going to happen is it? Especially if they're well enough to be moaning about it! Oh goodness me I give thanks that this is a gratitude blog and I've remembered to stop moaning about it all myself!
I give thanks sometimes partners, family and carers aren't always arrogant, insensitive and indignant if told they too must obey the hospital rules, or accept that staff too may have some relevant knowledge and skills... Where is a good stuff starched matron when you need one eh?
For the very different husband of a stoma patient kindly steering the specialist nurse to me when she'd finished with his wife so I could blag some dry wipes. Nothing else quite does the job they do!
I give thanks after waiting all day I've finally been told my dialysis will start at 5pm. This is a great shame as I won't be able to eat or greet Rachel properly if she manages to make it, but at least I'll get a change of scene and position.
Tuesday 3 September 2019
Veinticuatro
I give thanks I'm on a 'ladies' bay'! For the brief peace between the visitors leaving and the long journey into night. Soon there's more than enough information flying around about the personal care of older females, so heaven preserve us from finding out any more than necessary about old men's bits - especially as hearing loss means it all needs to be shouted about! I give thanks the people who need the most help are getting as much as they are, and for the harried staff providing as much as they can.
Oh and we had a nurse with a dress on last night. She had a rather sixties bob too. I said it might perk the male bay up but said she wasn't nursing men!
I give thanks for a visit from Sarah who works in research at the hospital here, and with whom I've become chummy enough for her to seek me out when seeing I wasn't where I should be. I told her the story about the dinosaur doctor who said he had to dumb things down to talk to patients, and she was horrified too! She and the nurse on duty this morning have helped me think of some tart retorts should I see him again...and reminded me to take note of his name which I missed in the horror of his presence before...
I give thanks for feeling a bit emotionally stronger than yesterday for he sure did bring me down. I had to sandwich myself between pillows with earplugs in and tissues over my eyes and to shut out the world around me a little and have a bit of a weep with my face to the wall which was the nearest thing to privacy I could find. I give thanks a kind health care assistant found me at tea time and drew the curtains round me for a hit more. I give thanks Julie is bringing me some treats for tea tonight...woohoo!
Oh and we had a nurse with a dress on last night. She had a rather sixties bob too. I said it might perk the male bay up but said she wasn't nursing men!
I give thanks for a visit from Sarah who works in research at the hospital here, and with whom I've become chummy enough for her to seek me out when seeing I wasn't where I should be. I told her the story about the dinosaur doctor who said he had to dumb things down to talk to patients, and she was horrified too! She and the nurse on duty this morning have helped me think of some tart retorts should I see him again...and reminded me to take note of his name which I missed in the horror of his presence before...
I give thanks for feeling a bit emotionally stronger than yesterday for he sure did bring me down. I had to sandwich myself between pillows with earplugs in and tissues over my eyes and to shut out the world around me a little and have a bit of a weep with my face to the wall which was the nearest thing to privacy I could find. I give thanks a kind health care assistant found me at tea time and drew the curtains round me for a hit more. I give thanks Julie is bringing me some treats for tea tonight...woohoo!
Monday 2 September 2019
Veintitres
I give thanks for all the opportunities to study human nature there are on a hospital ward. Some times you can make a pretty good stab at guessing what folk are like by their appearance - especially staff of course who probably have more control over it than patients, despite their uniforms. Oh and tones of voice...just like your cumulative laughter or frowns etch themselves into your face, it seems chuckles and grumbles can bend your vocal chords to make happier or whinier sounds.
I have to cling to what I can, I'm close to the limit of how long I can hold my breath in the toxic-to-me air of the hospital. My mobility is improving but my morale is plummeting and after a nasty paternalistic doctor I'd never met before came to tell me something serious while I was having dialisys earlier I ended up snivelling into my already soggy fish pie.
Hospital - where no one hears you cry. Where no one hears you full stop, and where you are bombarded by voices, buzzers, beeps, but you will never hear silence or a natural sound. Where you are frequently touched, whether you want to be or not, but no one touches you.
I give thanks on behalf of loved people that visiting now lasts from 10.30 to 20.00. And for the extra loved, there are no limits on numbers by the bed. People are often sitting closer to me than I would like them to be if they were visiting me! It is lovely though to see that warmth in action, and to hear the way relatives champion the patient's needs, liaising with all levels of staff, not leaving them to uncertain to ask, or ask and be ignored, or left waiting far too long...
I give thanks for finding out I could have help spreading butter and marmalade on my toast, and cutting it, as this is something I've failed to manage too often to attempt again. I wonder if it will really happen tomorrow or if they'll just say, oh no, we're much too busy...
I give thanks I have a home I want to go to. I wonder if I will...
I have to cling to what I can, I'm close to the limit of how long I can hold my breath in the toxic-to-me air of the hospital. My mobility is improving but my morale is plummeting and after a nasty paternalistic doctor I'd never met before came to tell me something serious while I was having dialisys earlier I ended up snivelling into my already soggy fish pie.
Hospital - where no one hears you cry. Where no one hears you full stop, and where you are bombarded by voices, buzzers, beeps, but you will never hear silence or a natural sound. Where you are frequently touched, whether you want to be or not, but no one touches you.
I give thanks on behalf of loved people that visiting now lasts from 10.30 to 20.00. And for the extra loved, there are no limits on numbers by the bed. People are often sitting closer to me than I would like them to be if they were visiting me! It is lovely though to see that warmth in action, and to hear the way relatives champion the patient's needs, liaising with all levels of staff, not leaving them to uncertain to ask, or ask and be ignored, or left waiting far too long...
I give thanks for finding out I could have help spreading butter and marmalade on my toast, and cutting it, as this is something I've failed to manage too often to attempt again. I wonder if it will really happen tomorrow or if they'll just say, oh no, we're much too busy...
I give thanks I have a home I want to go to. I wonder if I will...
Sunday 1 September 2019
Veintidos
There's a granny moved into the bed next to me - constant stream of multigenerational visitors to absorb her constant stream of amiable chatter. She's quiet as a mouse with her crosswords when she's on her own, but with company she talks through everything including eating! Would anything stop it I wondered, and not long afterwards I threw up repeatedly on the floor a few feet away and nope, not a syllable was skipped! Nice daughter noticed though and went to get me help as my bell was ringing to no avail.
That was last night when I thought the vegan stew tasted off from the first mouthful, and clearly my tummy agreed! Felt much better out than in but despite my aiming very tidily the staff were not best pleased that I couldn't wait for them to answer the bell!
I give thanks for feeling considerably brighter today...and for managing a few mouthfuls of yukky cornflakes before being whisked off for an MRI. Also, as you can imagine, that the spinal surgeon said preliminary examinations of results suggests nothing obvious requiring surgery...though they still want to get to the bottom of the mystery infammation/infection to stop it flaring up again.
I give thanks for being increasingly mobile, still zimmering but without the accompanying symphony of squawks and squeals. I can get from seat to frame and vice versa and womble along a short way unaided though I like someone hovering nearby. When the surgeon came to have a chat with me I even managed to just take his hand, stand and walk a few steps with just holding that for balance.
I give thanks for lunch being unusually edible today though that was slightly unfortunate as Mima kindly came on the bus to bring me a tasty selection of preferred fare prepared from leftovers from my fridge. Luckily tea was pretty horrid so I give thanks I'd persuaded the housekeeping staff to save leftovers of my treats to have at a more tummy pleasing time.
That was last night when I thought the vegan stew tasted off from the first mouthful, and clearly my tummy agreed! Felt much better out than in but despite my aiming very tidily the staff were not best pleased that I couldn't wait for them to answer the bell!
I give thanks for feeling considerably brighter today...and for managing a few mouthfuls of yukky cornflakes before being whisked off for an MRI. Also, as you can imagine, that the spinal surgeon said preliminary examinations of results suggests nothing obvious requiring surgery...though they still want to get to the bottom of the mystery infammation/infection to stop it flaring up again.
I give thanks for being increasingly mobile, still zimmering but without the accompanying symphony of squawks and squeals. I can get from seat to frame and vice versa and womble along a short way unaided though I like someone hovering nearby. When the surgeon came to have a chat with me I even managed to just take his hand, stand and walk a few steps with just holding that for balance.
I give thanks for lunch being unusually edible today though that was slightly unfortunate as Mima kindly came on the bus to bring me a tasty selection of preferred fare prepared from leftovers from my fridge. Luckily tea was pretty horrid so I give thanks I'd persuaded the housekeeping staff to save leftovers of my treats to have at a more tummy pleasing time.
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