It’s another fine mess!!

Morning peoples after no blogs for months, now I won’t go away!

But if you remember my last blog was about how everything can change in a second, well life was not up to much but settled into a manageable routine, still paperwork matters to be followed up, and OT coming to mums on Monday – can someone explain why we have had around 4 OTs!!! This one is coming by arrangement with The CPN to look round the whole house, in particular the bath room, mums seating and any other thing they can do to make the house safer and more secure for her safety – when she has been home since October???? I hope we get something positive from this visit as things aren't great for mum, especially the bathroom.

So all ticking over, my cleaner did all my bedding and mums on Monday (ironing) so I took them over when we had meeting with CPN. Laundry up to date, more PJs, bought etc.

On Wednesday evening sitting in bed planning my first full day off for ages, while watching 24 hours in A&E,  when I heard a funny plop noise, I thought it must have been the telly, then Niagra falls came through my light fitting on the ceiling. Out of bed, grabbing IPad and anything else on bed, and tossed into livingroom, got down to push bed with thighs and not back out of the direct line of the heaviest downpour, threw some towels onto the carpet– which floated….. Remembered I had some plastic from an Amazon box threw it down, while phoning OH to get home (he was on his way to work.). Threw on Kaftan and stick, got keys (kept dropping them as I was shaking so much, and headed to flat above, knocked and knocked, but nothing, back down, by this time I was hyperventilating I think! Phoned insurance, not interested as water coming into my property not from it. Phoned police, who said call Council, did that they said they would get Water Ingress team to call me, which they did and said they would call.

Partner up several times banging on door, still no response. My Neighbour who does my reflexology, arrived home in the middle of this, so came in to see, and stayed with me till 1, had a couple of glasses of wine and blethered, stopped me thinking about it too much, another neighbour who is also above me but at the other side, popped down, he was worried he had done something, had a look, and went off.

Then Council men arrived, they looked, went upstairs and knocked, looked through letter box, back down more chat went back up and she answered she had been asleep and had heard the banging, they weren’t too pleased. They had a theory that it was hair and whatever else clogging pipes and this had been pushed back more and more till it reached a weak bit on the pipe and the rest is history!

So once everyone had gone, I thought I have a carpet cleaner an upright, and when you pull it back it sooks up the water. So I got a fair bit of dirty brown water out. Took photos, showed how wet the bed was even though it didn't get the worst because I shoved a lot of it out the way, the memory foam mattress topper, mattress and all down the side of bed, brand new duvet all soaked…I whipped the bedding off and in the wash quickly cause I am very fond of it!

So Yet again in a second my life has changed yet again. I am camped out in the livingroom, sleeping on a very small uncomfy bed. I have had to explain to mum I won’t be around as much, though I am there for OT  on Monday afternoon, Insurance lady coming round Tuesday.

I have heard nothing from the girl above, or the owner (rented property but I and my insurance have all her details. I did get OH to pop a note through last night, to say I was disappointed that neither she nor the owner had the courtesy to contact me, to ask if the cause had been identified and repaired, or if not confirmation she will not use the shower again till it is. That was last night, lets see what happens.

My GP call last night to ask how I was as he saw me on Wednesday morning and was concerned, when I told him the story I just said you can throw anything at me now, past getting upset. Blood count is great, but hardly any store , so will monitor. So It isn't anemia causing breathlessness, so being referred to a cardiologist…….Joy, so next month Neurologist, bit later eye hospital and now cardiologist to fit in too, plus additional meds to be taken.

 Put an order in Asda for delivery 9-11, though they e mailed to say 9-10, first ever delivery and all went well . Nice to see the new fridge / freezer with more food in, and new fridge magnets - eh Fiona, and Laura (it is all clear now!)

So I sit here in my tip of a living room, pillows, and throws everywhere, trying to be as tidy as I can so I don’t get stressed by total chaos.

I have to phone the carpet man to arrange to come and measure to give me an estimate for carpet and underlay in bedroom, I need to phone insurance re bedroom light, and mum phones!.

If the doc is coming on Thursday I need my hair done, cut and colour. I ask if she is sure as it wasn't that long ago, and I’m pretty much in a mess, the response, do what I like it obviously doesn't matter. I was torn between anger and just disbelief. She phoned back later, don't do anything about my hair, we’ll do it another time. I explained, I have to be at her house on Monday for OT, I have to be in my flat on Tuesday for Insurance folk, doc coming on Thursday and I have to be at her house for that so it could only be Wednesday. I think she understood, but I just had to say I can’t cope this week, too much on and I am not going to be too well with sleeping on a teeny settee, not that I don’t want to just not able to, and still trying to get the rest I’ve trying for.

So the message this time: Just when you think it’s all over……………………

Every second counts!

Well it’s been a while since I have been on here, no time. You see in early August my mum started to feel ill, to become clumsy, dizzy, having falls. Yet the month before her birthday near the beginning and mine near the end, had been fine.

So after 3 weeks in a row of getting GP out to see her, I managed to persuade her to go into hospital as they wanted. So after a day of hanging around for the ambulance to get to the hospital, to wait around to be seen, II eventually left the hospital around 8 and got a taxi home.

That day changed all our lives, mum, me (her only child) and my partner.

Mum was in hospital a total of 9 weeks, and they could find nothing, not one thing wrong with her yet her behaviour became more and more strange and bizarre. Then she would get better, then the next time you arrived, her bags were packed and she would be with us soon as her job had left her tired, or some such. She was drifting away, little by little.

Once they decided there was no physical problem, apart from her painful hips, they sent her home for 3 days with carers , alarms all over the house, people turning up in the middle of the night, kettle and toaster locked up, gas turned off at the hob….. At the end of the 3 days they decided she was well enough to stay at home with support.

It was decided that a carer would call 4 times a day for meals and meds etc. and in the evening to check all was well. This has been the situation to date, ups and downs. She was lucky to get her main carer, a lovely lady who looked after her well, till recently. It took weeks to get a bath chair fitted as she could not get in or out of the bath, the contract to start giving the carer the extra time did not start till after Christmas – yes you heard me correctly, after Christmas, and even then the care company made a pigs ear of it and it did not start till 26 January. The caring crowd were so caring it took them all that time to fit a bath chair which took the man 15 minutes at most to fit.

I am not a person comfortable with confrontation, at least not unless I have facts and figures before me, but I have learned to be determined, and to keep going and going till they listen, to tell an idiot that I was furious at my mums treatment and despite the way she tried to talk over me I held my place as I had all the facts and figures in front of me. Unfortunately she seems to be a worse person than I thought and has now started a campaign against my mum, her carer was treated badly and removed from mum, the person who she had been close to and with whom she had formed a good working relationship – let’s face it when someone bathes you and all sorts of other personal tasks, you must be comfortable.

Another doctor became involved – like a breath of fresh air, went through the meds, to discover she was as good as being kept doped all day and night, which was why she was always tired. I had only recently been sent all the forms re finance – this should have all been done before mum left hospital, and on and on with the sheer incompetence of some of the people along the way. She luckily took on her case as the GP was not involved unless she was “ill”. Gave me guides to help m, wrote to GP, we changed between us the way the medication was collected.

Why should I be excited because a doctor cared about her patient and wanted to do her best for her??????

I have learned I just have to push away, e mal after e mail, letter after letter, no phone calls for me, they leave no proof. I must shout and I must be a nuisance they want rid of, I find it distasteful and has to make me and anyone else reading this what would have happened if mum was on her own, with no one to fight in her corner?????.

The big problem is that I am disabled, I have no great strength, I cant move fast, I cant do what I would like to be able to do for her. One day I took over after a bath and did her hair, fed her, into nightie, ha to help her up and down several times, then trying to get her into bed – she may have lost a lot of weight, but with her sore and stiff hips, my god, I pushed, pulled, rolled her just to get her sitting in bed and not too near the end in case she fell out, got her a nice cuppa, and she needed the loo…………….so it started all over again. By this time I had been out there about 5 hours, and I have a real dislike of my mum’s house, nothing to do with the house, but she feels the cold terribly, much worse than anyone else I know, I am the exact opposite. So for her to be comfortable and me doing all this physical stuff, my clothes are almost dripping, my hair is wet and sticking to my head and dripping off my face.

So eventually all settled, taxi phoned for and I was on my way home. I just knew and got the first pain pills in me asap, but I hadn’t a chance I spent 3 hours howling with pain, everywhere, and on the point of trying to knock myself out by banging my head off the wall or phoning for stronger pain meds, when I thought to take some diazepam……just enough that it was bearable.

What that did was remind me why I cant do what I was trying to do, and combined with the exhaustion of very little sleep ( mum wakes so calls me to confirm the time on the clock 2 am 3 am whatever) plus extreme fatigue is part and parcel of my AS.

So what I have learned, at this late stage, is few folk help you unless you ask and ask and demand if you need to, that while everyone cares, they don’t really want to be involved – no a single neighbour even asked if they could take her big trolly bin out on bin day and bring it in for her, and one night when I had an emergency I called a neighbour, but his wife had just put his dinner on the table, so apart from the few, you become pariahs.

Despite all that I know that your life can be completely and utterly changed in a second and with no warning, so I shall enjoy every good thing that happens , however small and meaningless to anyone else, I will try to smile and maybe bring a little joy to someone else’s day. To remember that I love my mum, but even in my 60’s I have a life too, a very restricted life it’s true with my health issues, but I have bought 3 things – each has multiple parts – but things I have always wanted to do. I have reflexology each month, I have a quite ugly to be honest, but a trolley I can handle much easier bringing laundry back and forth, or shopping.

I never go to anything vaguely social, so I must make an effort for me. I frequently feel invisible as there is by some,the idea I’m lucky I  only need to visit a few days a week, but in those three days I do far more than I should, I can’t just sit and chat and not do jobs obviously needing doing. Then the endless paperwork when I get home. I am restricted as I have no transport and cannot walk far enough to do all that is involved in getting to mums, maybe in the summer with my stronger trolley, you never know. They have no clue about the sleepless nights, the added pain, the depression.

So I got a deep plum slash down the side of my bright red hair, I wear what I like these days, I don’t give a toss. I had one of my E Bay buys, a Purple and purple patterned sleeveless tunic with a ruffle round the bottom, I put a black long sleeved T under it and block baggy trousers under my furry pink crocks, and my mum never stopped saying how great it was, probably should have been half my age to wear, but who cares?

This has been more of a ramble than a blog, but I hope if anyone reads it makes them think that all is not what we think, you never know just what is going on in other people’s lives, and that people who have relatives in this situation, there is so much more going on than you might imagine. That you, like me, should have the deepest respect for those who have loved ones with them full time. But mainly try to realise what is important and what is not, try to enjoy your life to the full because it really can change forever, and you can be lost in a second.

I  need a scotch now!!! I havent proof read this as my eyes have decided enough is enough and my hands are clawing, so some of the ramble might be a mess, but the gist I hope will be there to understand.

Update

Still in the midst of trying to get my life into a more balanced place - what I want, what others need from me, not easy, specially when you add the health side of things into the equation.

Went out shopping with mum today, just because she really wanted out the house and was feeling very depressed. I was not feeling to good, had not slept too well, but  could tell with her voice that I had to make the effort. Off we go, out to our usual shopping place. We did get some things returned, mum found a few things in the sale ( tall and slim so easy to find clothes that look great), and insisted on giving me money to buy myself something as she had realised (despite my best efforts) that I wasn't great. I have to keep telling her she doesn't have to give me money, but if she buys something for herself I have to get something too! bought a cheap basic T shirt, but not good enough, so we made the mistake of going into Monsoon. I do love that shop, though for me it is more expensive than usual. I was wearing blue linen trousers I had bought online - and which are a great fit (not easy with my body!) and as I walked down the shop, I swear this blouse waved its arms at me, it certainly caught me eye, and had my size. I clutched it and went off to try it on, it fitted, and I was in love, that blouse was mine, didnt care if mother liked it or not - she did, inn fact she liked it so much she bought it, despite having already given me money, I reminded her, but she wanted the responsibility for the purchase!.

Still daft as I have no social life, but I care how I dress, and I will get pleasure from it.  Mum is getting her hair done tomorrow and as the salon is across the road, that will be tomorrow taken care of........

I might manage to have a 'day off' on Thursday before shopping day Friday, or the other way round. That is a laugh, of course, 'day off', day to do the household chores.Cause I am disabled, no longer able to work, I apparently have all the time in the world to do whatever I want, so therefore all the chores can be done by me etc etc etc, then like today, we had to walk at a brisk pace across 2 roads to get to the taxi rank. I arrived with hair sticking to my face, limping and sounding like an asthmatic (I am not one) it took me ages to breath properly, and for the shaking legs to still, the back spasms to stop, then I am reminded that I am not as mobile or a capable as I try to think I am.

When you are running, ok, walking round your own wee space, you are ok, you are working within such a small area, that it is so easy to forget, that the walk round the corner to the bus stop can wind you - badly. That the walk round the corner to the supermarket - the walk round the supermarket, and then home, wheeling whatever you have bought - is impossible!!

Never mind the sun is out, I can see it out the window, so folk generally feel happier. I wish at this time I still lived in a house and had my own wee garden with a degree of privacy so I could sit outside and read in the fresh air, but hey, at least I have my flat, many people are far far worse off.

Must stop rambling now, so till the next time byeeeee

Hi Strangers

Been a while since I did a blog, not sure why I have taken the notion today, so I think I’ll just ‘do as it says on the can’ as it were, and think out loud!

It’s a Monday holiday, at least it’s a bank holiday and some places are open, some not. Makes a it quite a boring day for TV, all to pot during the day. Tried to read for a while, but I still have this difficulty in reading during the day – unless I am unwell – stupid or what! So Milo and I are resting, side by side while considering our next move.

I have a wash on, and a loaf in the bread machine, so its not like I have been doing nothing, showered, hair washed and kind of sorted….. Need to try  on a couple of wee tops I bought, in case they have to go back, but that means getting dressed…..naw, not in the mood.

I buy clothes to try and cheer myself up, yet I am heavier than I have ever been and have no social life to talk of…….. still I can look as good as I can manage while shopping!!

I need a holiday, so badly need a rest, but what is available to me, in honesty, would probably be the worst thing I could do. If I could sneak away on my own for a couple of days, pack my Kindle. Go someplace I would like to go to, do what I would like to do, when I would like to do it, but what is the point of even thinking about it, I can’t do that. I have too much responsibility to others, I would hurt feelings, feelings I must not hurt now.

Funny how our lives turn out, I was reminded when I met up with a friend I have not seen for many years. She knew most of my story at that time of my life, I was catching up with hers. In those days we were young and married and full of hope and plans, yet neither marriage lasted. She was in a different situation than I was as she had 2 children; I had chronic health issues which could only get worse. I was delighted to know she is now very happily remarried, and her children, and grand children are doing well.

I am still dealing with even more chronic health issues, had to give up work, in a relationship which really is more of convenience, and my only real family is my mother who is getting on, and I have to watch her grow more frail – oh don’t get me wrong, she is great for her age – and more dependent on me for companionship. Partner works unsociable hours and then watches sport on TV, so most of the time I am at home, in MY home I am alone and being quiet. The other alternative is going shopping with mum, which in itself is turning into a chore. But as we go through alternatives, we come up against my lack of mobility, my fatigue; or things I like mum doesn't and vice verse.

So at times it gets me down, very down, get very tired of just existing these days. Even if partner could drive, could make a difference, but then of course his working hours would get in the way. I can’t remember the last time I was out in the evening, I can remember the last time I was out for lunch and the time before that (2 years previously).

So watch TV, read books, try to keep my home in a reasonable condition….I have turned into an unpaid housekeeper – when I am able. Though in the winter it isn't so bad, but when the sun is out, and I am sitting in, looking out – like so many other people I know – and watching the world go by……

As they are all I have ( TV - books)  I have been less patient and find I am much more difficult to please now, and have been cutting back quite a bit on TV, I have stopped reading books when I am forced to admit I am not really enjoying them…….

Must try to find something to actually enjoy this summer, at least in June my hall area is to be painted and that will be the flat done, all fresh and easier to live in. One of the biggest pains in the bum, is all the road works for the trams, so difficult to get buses now, without several changes. Then of course trying to meet up with mum so we can maybe just go on a few jaunts on the  bus on a nice day……..Need to get the energy to put the thinking cap on.

Right  better check on the washing and the bread.

Bye!

Thoughts from an apparent scrounger

At breakfast time today I heard an interview with that Osborne man, you know the one, he lives in cloud cuckoo land. You know the place where everyone is fit and well, working hard, looking after themselves and their families with no assistance from anyone. These people are bright and ambitious and pay taxes and do their bit for this country.

What about the bankers who brought this country to its knees?

What about the MPs with their fraudulent claims for expenses?

What about the companies we allow to trade here paying next to nothing in tax?

What about the immigrant’s we allow into the country, give them benefits and homes?

What about the billions we give away each year to countries where they don’t chose to look after their own.

But no, the big bad, despicable, nasty, lazy, people  draining the life out of this country are those who do not work and claim benefit.

While I accept their will always be people who play the system, what about the majority of people, those who through no fault of their own are unable to work? I am one of those people. I worked Friday nights and Saturday night’s washing dishes in the local Wimpy bar, and all day Saturday in Woolies, as soon as I was old enough, this was so I could go on school trips. I left school at 18 and apart from a break when I was recovering from serious spine surgery; I have never been out of work. When I was ready to go back to work after recovering from the surgery, I signed up to retrain and learn skills to enable me to have more choices when I went looking for a job. I learned all they had to offer and went on to run the training centre till they closed down. It was a very short time before I got another job, it was 1994. I stayed with this firm, in its various guises, despite suffering from a long term chronic disease, and various other health issues, till I retired.

The last stage of my employment was after a merger and the new premises were a considerable distance from where I live, the conditions were dreadful for me. It was quickly apparent that those in charge were mainly not from my side of the merger and did not care to have a woman in her 50's with health issues – despite a sickness record which could stand up for comparison to any one they might choose. Life was made difficult,, intolerable. With the additional stress I ended up having to go off sick and find out how to go about retiring early because of my health issues.

I did finally manage to get it all sorted and retired early (4 years before my state pension was due to begin). I pay tax on my small pension, and now that my state pension has started I will pay more. I receive DLA, as I qualify; yet this morning I hear that my neighbours who are 'go getting' and working will have  apparently been looking down on me, during those 4 years as I lay in my bed when they were setting off for work! The fact that I was laying my bed was because I had not yet managed to get out of it, because of the pain and stiffness, was of no concern. I assume I was thought of as leaching off the state, I was partly responsible for bringing the country to its knees, I have let the side down, I am worthless, invisible, beyond contempt.

I pay tax, I have paid tax all my life, now I have no real life, I rarely leave my home, I certainly have no social life, I have not been out to the cinema, a meal in the evening, in fact I cannot remember when I was last out in the evening. Had a holiday, partly because of lack of confidence due to my mobility, difficulty in being comfortable and being a nuisance , and because I would need to take taxis and this all adds to the cost, sadly I am certainly not living the easy life. I have barely enough to live on. I have some savings and some money from the lump sum part of my pension (being 4 years early very much less than I would have had if I retired at the full time). This is all being spent on getting my home made safe for me, making it as easy as possible for me to maintain – yet I am sure there will be those questioning how I am able to do all the work I am doing – because I am using money I earned that’s how, and because I spend the vast majority of my time in my home.

It is a desperate situation when people like me, every day, are being put through the inquisition to enable them to get benefits - that there are people walking miles to get a  hand out of food as they are starving -  that elderly are dying in their homes as they cannot afford to eat or heat their homes properly. This is 2012, people starving, freezing, dying because they are treated as the lowest of the low, that man Osborne saying we are despised…..oh wait….is that the plan, kill us off or make life so bloody unendurable that we take our own??? I f so, give yourself  a pat on the back Osborne – you are succeeding. I hope you can sleep at night, as many many people cannot.

More work in the flat.....

Another Monday morning, though not a normal one – no this is the first day of new kitchen being fitted.

Yesterday was spent emptying all the cupboards and drawers, and what a lot of stuff there was!! It starts in a fairly organised fashion – and things were examined and decisions made whether to keep or not. Dates on tins and jars checked (1997!!! Oops) but after a while, all that matters is getting it done. I reckon that as everything has to be washed and sorted before being put back in a new kitchen, the second wave of sorting and checking happens then.

But aren’t men gormless? No instruction given, and this means (it appears) that nothing needs to be done by. Say ‘ will you take that bag there, and put everything from that drawer in  it – fold them neatly and when it is full, place in the hall cupboard on the 2^nd shelf on the left’ and its done……. But the trick is to remember everything single thing he needs to do.

Up early this morning to do last minute things, almost started to sweep the floor when I realised……. Hardly sat down when the kitchen arrived, this has now been mainly stashed in the common hall area outside the flat, before the workmen arrived. Electrician did his couple of jobs and away, and now I am sitting her freezing listening to the banging.

We had to close and lock the cat flap and they will go out and in via back bedroom window today, as we don’t want them going into the kitchen – not that they probably would do. But the cat flap will be opened once the men have gone. Their food has been moved into the back bedroom also.

Feel at such a loose end, can’t really relax, yet can’t really do anything. I have taken photos of the various stages, like I did with the bathroom, so interesting to see how it evolves.

Right might try and read my book now, though so cold – put the heating off as no point with the doors being opened and closed all the time. It will be worth it, wont it?

Update, as been missing for some time

I realise I have not been blogging recently, for quite some time in fact. I have some excuses, I decorated my living room and had to deal with all the chaos that went with it. I had hardly caught my breath when there was water ingress into my bedroom from flat above.

This resulted in the insurance company arranging to empty my bedroom and store the main furniture for me. The smaller stuff I kept – just for practical purposes, so the rest of the flat was in chaos – with me camped out on my settee for almost a week and a half.

The ceiling was brought down and plasterboard put up, then it all skimmed. A wait for 4 days till dry enough to paint the ceiling and the walls, they didn’t do the wood though. So, as soon as semi organised, got my painter to come to do the white wood work – but only where it was seen (I could not bear any more upheaval!)

Now just waiting for the new curtains and blanket box I have on order to finish that room.

I had been planning to update my kitchen, for practical reasons – easy to clean and easy for me to work in, and after all that has been happening, I decided I had better bite the bullet and get the work done now, because any delay and I might never do it!!

Plans have been agreed, as have cost, and it all begins in early December. I have found a home for my dresser, which should be going this weekend, then next week the big clear out begins! My ‘how to be positive’ attitude is that I will at last manage to have a good clear out. You know those drawers chock a block with junk , tins which might now be out of date…etc  Will chuck out or  send to charity shop whatever is appropriate. Then last night I thought I would plan what will go where, to try to be as sensible as possible. If I changed my mind once, I changed it a dozen times! Keeps me out of mischief!

I am not looking forward, in truth, to all the work involved. There is the clear out, the chaos as stuff is stored, the trying to live for 3-4 days with a kettle and microwave. Then, of course, putting it all back…… then the vinyl to be chosen and fitted for the floor, then painting.

I have settled for a slightly adventurous colour scheme – being tired of always playing safe – so units are high gloss white, splash back and work tops black, the vinyl to be a slate tiled effect. Then all the walls to be pillar box red!!! I have bought an oil cloth for the table, in a Japanese design with white, black, grey and red. The ceiling is to be a soft grey. I am being brave and doing what I want – from the quiet response I got from mum and OH, I am not so sure they are as enthusiast, but hey my kitchen, I am paying for it!!

Through all of this there has been a bit of obvious stress, and I have been plagued by neck pain, however new meds are being taken which seem to be helping. I might even consider getting in professional cleaners to go through the flat after kitchen done, and the hall painted (that will be the last thing to be done) If I can get the hall done before Christmas. That will then be finished, finito, done!

It’s funny, that even though you are well aware of your limitations when you have a chronic disease, you forget that your condition will evolve and worsen in time. This was what caused the decision to carry out the kitchen work, as I have found that I have real problems getting stuff out from base units, or from too high in wall units. I am going to have the deep double drawers in some of the units so I can have the likes of crockery much easier to get to. As I have difficulty reaching to clean, the gloss white doors are easier to clean as dirt tends to slide off and so on.

I hope this means I will start the new year with my flat as good as it can be with my financial restrictions, as I can’t see anything major being done again.

Apart from all the above, life has been very quiet, cats are great, my hair is still red!