So very lost!

For the first time in days I have some down time. On my own, relaxing and time to take in what's happened this week. Most importantly the passing of Graeme Breen. Now I know I have spoken of this before but suddenly I am overwhelmed by a deep feeling of loss and emptiness. How can this be so? How can someone so dear to me, to loving to so many possibly be gone? Can it really be true that I will never see his cheeky little face again!

As I lay here alone in bed, thinking of all the silly and sentimental times we shared, sadness washes over me, and tears form in my eyes. I want so desperately to cry a river of tears for such a loss, but the flood gates hold them back. Such emotion is rushing through my veins right now. Anger, frustration and utter confusion. Someone must have something wrong, surely... Please!

To have been trusted in his inner circle, told his deepest thoughts, and being someone he could turn to in times of need has been nothing less than an honour. To have shared time with him so recently after coming out of hospital, even if I did descend upon him and his parents house without invite, gives me some relief. In knowing I wrote my true feelings for him to see, and to have spoken about so much on that visit again makes me feel a little more relief that I managed that.

Is it possible to be so full of emptiness? Can you be consumed by an overwhelming feeling of absolutely nothing? If its not, then I have no idea what I feel right now, other than torn open, and emptied of all understanding of how things work, and why we do all this, only for life to do something like this to someone so precious.

I hope one day to have even one tenth of the friends and respect that graeme had. For such a little man, he was a mighty force, and made a huge impact on so many. Battling illness, offering support, pushing boundaries, and just being a great friend to so many, he will be remembered for so very much. A small man with a huge heard, a quiet guy with a mighty voice. His footprints on my heart, and voice in my head will live on until my own final breath.

Regards
Michael

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Being pulled from every angle.

Have you ever had one of those days or weeks where it feels it is impossible to succeed? Like every aspect of life is pulling at a different limb, and whichever direction you move in will only be right for one tiny part of your life. Yesterday I developed a severe back ache, and right now it feels like its because I am over stretched and being pulled all over the place. Any decision I have made recently only seems correct for the one situation I have given thought to, and what is good for the goose, sure aint good for the gander.

What I need to do now is take a good hard look at everything going on, decide on some priorities, take a swipe at a few other things and cut them free, and just basically get on with what is important to me. Easier said that gone though, I warn you now.

Let's look at money first, that sneeky stuff that seems fine for ages, but then in an instant just runs dry and leaves you high and dry. In my case I thought I was doing pretty well, managing mine and my mums money, dealing with bills etc, but then came alone half pay! Doom and gloom ahead. I have tried for a week now to get my payslip from my employer, so I could apply for help with the rent, but they have been slow about sending it out. So another week lost that I could claim for help with the rent and council tax. It has finally arrived now though, and using the benefit calculator I will get a fair bit of help, so fingers crossed.

Then there is my project, which swallows up money like a huge pit. Nearing the very end of it all now, but almost out of credit with it all, it leaves me in a precarious situation. Without the cash to finish it will all have been a waste, but to get the cash to finish requires me to borrow. I'm not that keen on borrowing right now, but at the same time I realise its the logical solution to a number of things tugging away at me right now. Back pay on council tax, a few bills etc, which are all mounting up, as well as getting my project finished, which would be of huge benefit.

Then there are the emotional strings, mum being in the hospice, the relationship with my sister under constant strain from misunderstandings and poor decisions. Recent events with my aunt have not helped at all, with her being given the impression that I am not helping with mum anymore. That was very upsetting for us both.

I want more space, I need more compassion, I feel I want more love. Does anyone understand me completely? Why am I doing things the way I'm doing them, taking the long road around where there is a perfectly good shortcut? I really don't know what the hell I'm doing right now, but I'm confident that with the support of friends and loved ones, and with making a few sensible well thought out decisions, I can sort most of this out. There WILL be sacrifices along the way, I have already committed to that, probably a long time ago, but the main thing is to some out the other end, in one piece and with a smile on my face.

Rough time ahead, but fingers crossed all will be well within the next few days.
Regards
Michael

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Being pulled from every angle.

Have you ever had one of those days or weeks where it feels it is impossible to succeed? Like every aspect of life is pulling at a different limb, and whichever direction you move in will only be right for one tiny part of your life. Yesterday I developed a severe back ache, and right now it feels like its because I am over stretched and being pulled all over the place. Any decision I have made recently only seems correct for the one situation I have given thought to, and what is good for the goose, sure aint good for the gander.

What I need to do now is take a good hard look at everything going on, decide on some priorities, take a swipe at a few other things and cut them free, and just basically get on with what is important to me. Easier said that gone though, I warn you now.

Let's look at money first, that sneeky stuff that seems fine for ages, but then in an instant just runs dry and leaves you high and dry. In my case I thought I was doing pretty well, managing mine and my mums money, dealing with bills etc, but then came alone half pay! Doom and gloom ahead. I have tried for a week now to get my payslip from my employer, so I could apply for help with the rent, but they have been slow about sending it out. So another week lost that I could claim for help with the rent and council tax. It has finally arrived now though, and using the benefit calculator I will get a fair bit of help, so fingers crossed.

Then there is my project, which swallows up money like a huge pit. Nearing the very end of it all now, but almost out of credit with it all, it leaves me in a precarious situation. Without the cash to finish it will all have been a waste, but to get the cash to finish requires me to borrow. I'm not that keen on borrowing right now, but at the same time I realise its the logical solution to a number of things tugging away at me right now. Back pay on council tax, a few bills etc, which are all mounting up, as well as getting my project finished, which would be of huge benefit.

Then there are the emotional strings, mum being in the hospice, the relationship with my sister under constant strain from misunderstandings and poor decisions. Recent events with my aunt have not helped at all, with her being given the impression that I am not helping with mum anymore. That was very upsetting for us both.

I want more space, I need more compassion, I feel I want more love. Does anyone understand me completely? Why am I doing things the way I'm doing them, taking the long road around where there is a perfectly good shortcut? I really don't know what the hell I'm doing right now, but I'm confident that with the support of friends and loved ones, and with making a few sensible well thought out decisions, I can sort most of this out. There WILL be sacrifices along the way, I have already committed to that, probably a long time ago, but the main thing is to some out the other end, in one piece and with a smile on my face.

Rough time ahead, but fingers crossed all will be well within the next few days.
Regards
Michael

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Graeme Breen

I thought it only fitting to try and put into words what the passing of Graeme means to me, and share my thoughts and feelings on who Graeme was to me. I'm sure we all have varied experiences of him, and have all been touched in some way by his warmth and loving nature, but here is my take on him.

Meeting Graeme some ten years ago now, first impressions were a curious little fella, but at the same time, someone who oozed character and happiness. It wasn't long before we started finding common ground and a bond formed. As the years have passed, so we hae drifted back and forth, in and out of each others day to day lives. Whenever around each other we would usually part company with another memory to look back and smile about. From heart to heart conversations, to crazy behaviour, there was always something to remember about each encounter.

To me Graeme was one of my closest and most trusted friends. In the times of Nicci, he was the one I turned to for comfort and help thinking straight. When that all ended we made a pact that if anything happened to the other, it would be the remaining one who would let our mutual friend Nicci know the news. So naturally I feel bad for failing in this, and for her hearing through someone else. But I must not dwell. We have spoken, all is well.

Other times together have included various days over Xmas and NY's, where we both rejected the celebration of just another day, once joined by Andy Lobo, and other times joined by the masses of the old Cruise-South at random locations around London and the UK. We shared a common interest, and that was to try not to take life and people too seriously, and while the world throws crap at you, smile, rise above it and make the most of the hand you were dealt. Coming from someone dealt such a cruel hand from birth, this has been a very valuable lesson and experience for me, and I am blessed to have shared so many moments with such an amazing man.

Nothing will ever replace the hole left by the passing of Graeme, he was unique, and precious in so many ways, he is impossible to replicate or replace. I'm sure we all share the same sentiment.

In the last few years with the battles with other ailmentsI feel that my relationship with Graeme went from strength to strength, becoming profound, and realising he was so important to me. He always joked calling me dad, saying I was like a second dad to him, old and always giving advice and there for him. Whilst a very lovely comment, and one that gave me a great sense of responsibility towards him, there is no way I could compete with the sheer awesomeness of his mother and father. For all they have been through, I feel privileged to have spent time with them, and having got to know them a bit. You are two wonderful people, and I can't imagine the pain you feel at this time. Hold your heads high, as your other sons should, and be so very proud of the life you gave my friend and your son. Blessed!

Life after Graeme, well he is one of the few people who I will never forget, and will be in my daily thoughts for an eternity. Having lost John Littlebury back last July and now Graeme, I have lost probably 2 of the closest friends a man could ever hope for in such a tragic and short space of time. It feels so unfair right now, and its hard to make sense of it. But I cannot dwell, while I can never replace them, I can do my best to live every day to the fullest, in their honour.

So I sit here now, in the sunshine in the garden, with the dogs Graeme battled allergies to meet, and was so proud to be photographed with, wondering what's next, and what I can do to make sure that he always remains by my side. My words will live on, and I can re-live this moment over and over, but I need something else. I am sure I will find what I need.

My goodbye to Graeme is a simple one. Thank you for blessing me with such a true and deep friendship. For your trust and honesty with me, and for being there when I needed a friend. Please watch over me, and guide me the way you always have. Through trouble and tough times, I will stand strong knowing I have my friend Graeme Breen by my side as always.

I love you forever, as my brother, and as your nominate second father. Farewell for now Graeme, Rest In Peace.

:( x
Regards
Michael

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"Its all their fault"

Apparently it is anyway. After just 36 hours in the hospice the cracks are appearing. Being kept too long waiting to go out for a cigarette after a joke with the staff has angered mum. She says they told her and my sister that she needed some meds before she could go outside, but after an hour the meds never arrived, and the staff said they were just joking about it. I have yet to check this with my sister, but I find it hard to believe they would do that.

Then there is the exercise. Now the doctors have assessed mum, they want her to see the physio for an assessment too, so they can see what she can do and what they can do for her to get her grip and mobility improved. Sadly this is apparently taking far too long, and all the while she is not able to get up and walk, her muscles are wasting away, ruining any chance of her being able to walk again. Now I agree inactivity is indeed going to be detrimental to her recovery, but given that she has refused out patients physio from St Christophers for months now, I don't think 36-48 hours of precautionary inactivity is likely to be the straw that breaks the camels back.

Its just a shame, and so frustrating to see such amazing care seen through such tinted glasses. All doom and gloom. Late giving medications.. No their times just differ from your usual times. Constipation not being taken seriously... No they are just trying to make their own observations before taking drastic action. Reports of staff first positive then so negative, its all so conflicting. I can see now why some people receive bad treatment and their families don't believe them now. Cry wolf is very apt.

I have to confess that my patience is somewhat stretched on this second visit. Not sure why, I guess I was hoping that she would cheer up about it a little, but clearly not.
Other concerns are what my sister has told the kids about mum. Mum seems obsessed by this, but doesn't seem to know why, nor what she hopes or thinks my sister may have told them. Almost like mum is just trying to keep her mind occupied on things other than herself.

I don't expect to have long exciting conversations with mum these days, and know when to leave in order not to overstay my welcome, not stretch my patience too far. But I really do with we could try and focus a little more on the positives that surround her. As they are serving jelly and ice-cream while I type, a positive has just arrived. The food... From what I have seen, and even from what mum says, its all lovely. Also refreshing to see her guzzle it all down too. So there, we have a positive.

I have had a pretty non-productive day today, on hold to the council tax office for ages, spoke with Lewisham Hospital about sorting the volume on mums hearing aid, not forgetting a couple of visits to see my awesome mum :op . Still got a few important things I need to do soon, finances are in a mess, work is needing sorting, and I need to get back on track with eating too. Other than that, all is well.

Oh well, looks like I'm the one moaning now, oops roles reversed.

An interesting thing has just happened before I sign off.. The lady serving tea is hard of hearing. She asked mum to repeat herself a couple of times and explained her problem. From one deaf person to another you would think mum would sympathise, but not the case. She got impatient very quickly... Oops, guess the shoe is on the other foot now.
Regards
Michael

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One day on....

And here I am sitting in the ward with my mum, all settled in, and has already decided on some of the positives and negatives of the place.
From my perspective I am blown away, the staff here are fantastic, so accommodating and have a plethora of patience for the things they face hour by hour. The facilities in here are amazing too, and the gardens are such a beautiful place to sit and relax. As the pictures should show.
However from the patient view things are slightly different, which is understandable, as I'm not the one here all day and night.
Firstly I should say that last night I finally had a deep sleep. And when I woke, while still tired I felt a lot fresher, and my mind is more open to the conversations with mum, especially the complaining lol.
So now as I sit here listening to the stories of last night. From how here meds were given to her too late, to how she had a great nights sleep after an injection.
The complaints so far are..
Not getting enough exercise (not walking)
Meds given too late.
Ward staff move her in a way she doesn't like, supporting, lifting etc.
Wants to know when she can go home (I will come back to that!)
Frustrated that they have not made her better yet.
Wants to know what's wrong with her and why its taking so long to find out.

There are others but that will do for now.
On the plus side...
The food is fantastic (eaten all 3 meals so far)
Staff are lovely
Place is beautiful, loves the pond.
Volunteers are great

So its a mixed bunch really. But more positive than negative.

A bit moan she has just actually had is about a questionnaire they went through with her this morning. Asking name, DOB, and other stuff, then going onto what day it was etc, in short a mental evaluation. Sadly mum didn't see it like that, and refers to it as a game and a waste of time. Stating to the nurse that she doesn't have time to play games, and it takes too much out of her to think about these things. (Yes mum, that's what they are trying to establish). The sad part she doesn't realise is, that part if this is to check cognitive thought, so she is doing herself no favours by refusing the test.

Speaking of her train of thought, she has just commented again on how long she will be here for, and when she can leave. So I asked her why she asked to come inn if she just wants to leave. Her answer was that everyone had been on about her coming in to see the place, soi she was just doing as she was told. Nothing like her reasoning of a few days ago. And also not true. The conversations about visiting "the place" were about Westwood House, a local care home. And this is the whole reason I was worried about people witnessing her request to come in to St Christophers. Well at least all bases are covered there eh.

The more I step back from caring for her, the more I am starting to see just how confused she is about certain things. For example, earlier the nice Welsh doctor came around and while taking bloods from mum, asked me if I could arrange with Audiology to have the volume turned up on the hearing aid. Now mum has been saying its blocked, its not working etc, but on the doctor saying that, mum then said "its not the hearing aid, its my ears, they are blocked"... Only to remove her hearing aid two mins later saying "I wish this bloody thing would work" Hmmm.

But the main thing is, she is not climbing walls and trying to get out of the place just yet. She enjoyed watching the snooker that I put on the tv for her last night, even after saying there was no point putting it on, and is getting out for ciggies and fresh air (weird combo if you ask me). So hopefully she will hang in there for a bit, and over the coming days/weeks, we can start to see a way for her to return to a little independence.

Thank you St Christophers, you are all wonderful.
Regards
Michael

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Mixed feelings.

Well its a weird old morning here, sitting on my bed, waiting for the ambulance from St Christophers to come and collect mum to take her into the hospice. And while trying to get my head around that, now also trying to accept and comprehend the fact that a VERY dear friend, one of my closest ever friends passed away last night.

So what a mixed bag of thoughts and emotions I have now. Relief for mum that she has accepted help, and requested for herself to go into the hospice. This is a short term solution, to help her adjust and manage her current situation, and also to investigate any other ailments she may have. Then possibly leave there and go into a nearby care home. Nothing is certain yet, she might ask to come straight back home on her arrival.

But the other news has knocked me for six. Not quite sure what I'm feeling now. I'm sure once all this mum stuff is over this morning, I will have time to let things sink in :(

RIP my friend, you will be sincerely missed every day of my life.
Regards
Michael

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All change please!

Well its been a few days since I wrote anything here, but in that short time, so much has changed.
First and foremost mums condition has rapidly deteriorated. Over the past week she has gone from shaky and not much activity, to bed bound. This morning has been the worst to date, with her being completely unable to get herself out of bed. The distress levels have now risen to an all time high with her. I have only ever seen her this distressed before when she has been very bad, and ambulance crews have been trying to get her to comply. This morning the carer had to request I help mum out of bed so she could clean her and change the bed. Even though it was me moving her, someone she has trusted for years to lift and carry her when required, now she becomes very distressed, and tried to fight me a bit. She did the same yesterday after becoming stuck on the bed whilst trying to get in it.

She is even reluctant to get into the wheelchair for a cigarette now, which is a shocker in itself.

The biggest shock was on Tuesday when the rapid decline started properly. I made her a drink, and on giving it to her she said "I can't put it off any longer". Not understanding what she meant, I asked, and she explained that she felt it was time to go into hospital or the hospice now. Hearing that, I guess some would just go with it, but I wanted and still want to be sure she wants this for the right reasons. I asked her again on Wednesday WHY she felt she needed to go in, and she replied "because I'm no use to anyone like this". Which just makes matters even harder really. If she would rather be at home, a second carer can be added, extra visits can be made and lots of other things to facilitate her staying at home. The biggest problem would be the round the care attention, but I'm sure between me and my sister that could be done.
On the flip side, there is the dignity part too. While she may not want to be in a hospice for her final weeks, there is also the matter of maintaining her dignity. Being incontinent, and unable to move is very distressing for her now, so part of the request to go into the hospice will be to keep some of that a little private too, which I understand and respect.

So I have planned for the doctor to make a home call today, to check mum over, and to discuss what happens next. Should care at home increase, or should she really have around the clock care in a facility now. A large part of me thinks the latter. But that is both hers and his decisions to make, and depends on if St Christophers are able to take her in. Even in the state she is in, she is still reluctant to go into hospital, Lewisham at least!

As for me, I'm desperately trying to keep my head above water here. Finally starting to catch up with bills, council tax and more, as well as make applications to the benefits team for help with the rent while I'm on half pay. I would say I have been stressed recently, but I at least feel quite "at ease" shall we say, with the whole matter. I have to admit I find it quite strange that I am feeling like this at such a stage. Maybe I have gone numb again, or maybe my batteries have had time to charge up a bit, either way its a blessing that I can do the bits that I'm doing without too much stress. How long that will last however I don't know.

So this afternoon will be a turning point but in which direction as of yet we have no idea. Mums health today also seems on the decline. Very vocal with cries and moans, and struggling to cough etc, so maybe the doctor will suggest hospital, or maybe not. So much to guess about, but it will all be decided soon enough.

The only thing I have noticed about myself in all this is being tired. Whenever I lay down or even just sit on the bed, my body just wants to sleep and shut down for a while. Preserving energy, or avoiding dealing with it all? I don't know the answer to that, but while its all working out ok, I won't try and change my routine. If my body says sleep, and I have time to, I will.

What's keeping me sane at the moment is seeing and spending time with other people, keeping myself distracted from dwelling on things too much, although I still manage to bring all of this into any conversation I have. But that's me :op

So that's a very long, yet very basic catch-up on how things are.

Will update soon, as and when things change and are decided.
Regards
Michael

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Wooaaaah, my eyes are on fire!

My, my, my, what a day!
I will try and keep this brief here as I'm ready to pass out, quite literally. So here goes.
Since my earlier entry about the whole shopping and money issues being a bit crappy, and other bits, things have moved on a bit. I saw my counsellor, who feels that me and my sister really need a sit down to get things sorted out once and for all. I have expressed a number of concerns about doing this, but ultimately I have to try everything once, right?
Also mum mentioned lower back pain this afternoon. First telling my sister just after the nurse had left, then finally telling me she wanted painkillers. As we don't have any, I called the doctor to visit and prescribe. On telling her that he was coming she lost it. Punching the bed, raised voice, angry. Wanting to know why people would not stop interfering in her life. I explained that no doctor means no painkillers, and her response was "I will go without". Now that's mature eh!
I spoke to the doctor later on after cancelling the callout, and he recommended trying the Oramorph we have in the house. This seems to have done the trick for now.
Later on she called me to ask if she could take painkillers with her sleeping pills. I was not sure which painkillers she meant, so I asked her. Again she lost it and said she didn't know. After a bit of shouting from her, and deep breaths from me we finally established what she meant and cleared that up.
Moments later on taking rubbish from her room to the kitchen I noticed her evening pills were untouched. As soon as I walked in the room to ask why they were not taken she lost it again. Ranting she had not eaten today and tablets would make her sick. However she HAS eaten today, on numerous occasions, so I'm a little worried about her recollection of such things now. I will be following up on this asap with the doctor.

With regards to symptoms, she is rapidly losing mobility, struggling to sit and stand, and slowing right down on her feet. Also the constant pain and discomfort in her lower back etc is starting to worry me, and I think she would benefit from a closer examination. She has an appointment at Guys next week, so hopefully we can follow up there.

Needless to say today has been quite stressful.

Then, to add fuel to the fire, what else could possibly go wrong. I will tell you what could and DID! Cadell, my recent pillar of strength and support. The outside voice of sanity (yes dear, you. I called you sane!), is incommunicado due to her phone being off. So all this stress and no vent to release some of the pressure to! Situation critical!
I'm hoping it can be sorted asap, and if not, then I will have to take drastic measures to re-establish contact. Its times like this you realise how important some people are to you, for sometimes very specific reasons. And today I realised without this outlet, without that particular contact, I'm quite literally dead in the water. Since this afternoon when contact was lost, my mind has just shut down, and the best option was sleep.

Fingers crossed for a better day tomorrow. And if not, then I will be on the motorway first thing to just run the hell away from it all!
Regards
Michael

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Is it wrong?

Here is one for you. After a week away, today is the first chance I have had to go to the shops for food. I picked up some bits yesterday, but today was what was needed rather than something for lunch.

So before I left I did my usual quick scan of the fridge and cupboards etc. When I walked in the kitchen to check, the first thing I noticed was a bowl of dry cereal on the table. Looking in the fridge I soon found out why... Mum had no milk, so no breakfast, no drink of tea for her. Moving on to the cupboards, I gave the cereal boxes a shake. Of 4 boxes, only 1 had anything worth while left in it. So no choice of cereal for mum either.

So I got looking properly. In the fridge, one meal remains for her, and another from the co-op which she usually complains about. The list goes on. The sort of things I usually make sure we have plenty of in the house, all run our or very low. Looks like this "sister doing the shopping" thing is working out really well.

Now mum can't always make it into the kitchen anymore, so she can't be expected to write shopping lists. When I go shopping I check the house first, see if there are specific requests, then stock up. Apparently this is not the approach for the new regime. With the confusion about money yesterday, and now no breakfast for mum today, I am left somewhat angered and disappointed that such simple things can run so out of control.

So back to my opening question.. Is it wrong? Wrong to feel put out by having to step in and sort things out, while all the time I just get stories of how hard the last week has been, how worn out my sister is from "all the work", and all that jazz. Why should I step in and make things right? After all the discussions and criticisms of how I do things here, the arguments and changes to how money is handled, and the insistence from my sister that her doing the shopping was mums choice and she had no say in the matter, yet here I am having to ensure the very basics are in place, let alone the other things.

As I queued in the supermarket I was begrudging picking the bits up, and having to pay for them. When I got home and offered to make mum tea, she commented there was none of her milk, and I was actually feeling spite and hard done by when I told her there now WAS milk as I had just been to the shops. That's wrong to feel that way surely?

Since coming back I have made more of an effort to be hands on with mum again, and step in even when not asked, to make drinks or food etc, like I used to do. And it feels good to do that. But there is just a hint of "them and us" going on now. So little communication between me and my sister. Me having to ask her about the new medication mum has been given, as she didn't tell me anything about it, not coming to see me yesterday when she was round, to fill me in on the week gone.

I don't know how to explain what I am thinking or feeling, but don't want to build up resentment or anything, as that's not good for anyone. Although how long the resentment will stay at bay is another matter. Just the little issues highlighted above are bad enough. Add to that some of the dramas from last week. The "effort" that was made to accommodate mum, and the complaints and moans about having to do things that I now do without even thinking about, and suddenly I feel like some kind of mug.

I know I vent a lot about what I do, and express my feelings of stress and anxiety about looking after mum. But I don't think I have ever actually turned my back or refused to get the job done. Care is my #1 priority, at whatever the cost to me, mentally, physically or financially. But it now seems this is NOT normal, and I should in fact be far less accommodating.

So, is it wrong to feel like some kind of mug here? Wrong to feel put out by having to step in on such simple things? Wrong to judge others for not being able to do the things I do day to day. Or wrong to even stop to question my actions at times, wondering if I should bother or not?

You decide.

I feel good right now, but these questions are building up and slowly burning away at me now.

Have a nice day, its lovely out.
Regards
Michael

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