Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Tuesday, 31 March 2009

Tuesday, 31 March 2009

Well, this is going to be an exciting entry: today I bathed the cat. Bear with me, because it's relevant as a comment on the state of my health and how severely everyday tasks affect me.

Anyway, it was the cat's first bath in over a year, which was a bit overdue because, even not going out, he has too much hair to do it himself and, for the first time in his life, he's properly molting, so I needed to help with the frequently falling fluff.

Yes, we already brush handfuls out everyday ... because it's frequently falling in big tufts all over the carpet, provoking much deliberate picking up and hand-brushing of the carpet. Hand-brushing, because the Hoover won't pick it up - which is more of a comment on the (lack of) quality of the carpet, than it is on the inefficiency of the Hoover, though there's probably an element of that too.

Can I manage to get on my hands and knees to hand brush a carpet? Not a hope!

In a house with all tiled floors and in a warm climate, you just bath the cat and let it go outside. It just sits in the sun and licks itself dry and any moisture it drops on the floor on the way from bathroom to exit door, is easily and simply mopped up.

It's a task I'd been putting off for ages, not wanting to cause him any more distress than he's already feeling in a strange land and, not wanting a grand "ho-ha", because it's not that easy to bathe a cat in a fully carpeted (even the bathroom) house and NOT leave one or two drops of slight dampness somewhere. Odd drops of water - even when they're appropriately inside the bath - cause great distress to my mother, who reacts, flapping about there being "water everywhere".

She also obsessively wipes and dries the bath every single time it gets wet, which I find both hilarious and the possible indication of a mental affliction, but, whilst I can ignore this behaviour, the cat wouldn't and would pick up on the tension. So to avoid any anxiety that might unnerve the poor cat, with shampoo at the ready, I grabbed the opportunity this morning while she was out for his annual bath.

He's no trouble at all: actually he's more compliant that the dog used to be and hardly objects, so it's not even a case of needing strength and agility to control him, 'coz the little bugger just stands in the bath and lets me massage the soap into his back, thoroughly enjoying the attention and purring away.

Afterwards, I wrapped him in a towel - which he lay in relaxed and prone like a baby - rubbed off the excess and then gave him some fluffing up with the hairdryer, which in the absence of sun and decent temperatures, was necessary to keep him warm while he was damp. He's happy to put up with this too and I can even roll him on his back to dry off the fur on his belly. He's no trouble at all.

Except the bending. And the doing anything really.

Yes I paced the task sensibly: I took a rest after the bathing and did the drying in several short bursts to avoid over exertion (cat puts up with that better too). When he was essentially dry, I let him finish "cooking" at Gas Mark 1 - he got into bed, so I switched on the electric blanket to keep him warm and avoid damp.

Heat helps fibromyalgia too, so I should benefit from lying on it too. And yet ...

This simple task just about "broke" my back (so you'd think from the pain), but not only that, I was actually shaking and trembling from exertion, indicating that I had pushed myself beyond my level of endurance. Now, even I'll admit that it's totally ridiculous to get to beyond my level of endurance from such simple, everyday, activities but this is not unusual. It's what happens and it's hard to see how to avoid or overcome it.

Monday, 30 March 2009

Monday, 30 March 2009

My eyes hurt and have spots in front of them making it uncomfortable to read, my hands and wrists hurt (enough to make me cry), but I have to keep doing something and distracting myself, because the pain in my hip - which is 24/7/365 anyway, but flares up in the mornings and evenings every day - is beyond unbearable today. Usually, this indicates humidity or impending rain, so you can understand why this is a constant thing in the UK. It's like having toothache permanently, it gets so bad it takes my breath away and makes me feel nauseous.

Painkillers do absolutely nothing for it and there's no comfortable position left that I can get into to alleviate it. There was one, which placed my foot on it's side, resting on my nice new, soft, comfortable mattress, but the skin on my feet has become so sensitive recently that the side of my foot is sore, red and inflamed and I'm doing my best not to irritate it any further, or I'll be unable to put any shoes on at all, nor walk even a few steps.

And if I find a comfortable position for my hip and foot, my knees hurt. They're already both still burning in pain and feel (but don't look) swollen from Friday's walk and from time to time I have to bend them (and my ankles and my hip) and then straighten them again to make them "crack" noisily, which temporarily relieves the "locking." Yet despite the burning sensation and despite the temperature reaching a relatively decent level today because of some morning sun, I've felt absolutely icy cold.

I bought some more long socks to be able to wear my boots without them rubbing painful red marks on my shins, or causing blisters so deep they take great gouges out of my heels, but that's not a permanent cure. Clearly, one can't wear ski-boots all year round and I'm finding them too heavy for anything but a short walk anyway. I also bought some Velcro (can't bend to fiddle with laces and they'd dig in anyway) Reebok trainers recently, but without support round my ankles, those are no good for walking further than a few yards either. I wore them when I went out on Friday and my ankles still feel "broken", swollen and painful.

Because the pain, particularly in my left wrist, has been unbearable since I came home Friday (I walked, but not on my hands!), I've had to try supporting it to ease the pain. Once again, the neoprene support has caused my skin to resemble that of a decomposing lizard. It isn't just dried, it hurts like really bad sunburn; feels like it's stretched too far and will rip apart. And I have a mysterious bruise on the back of my hand, which, unless I hit something in my sleep, I have no recollection of getting, except that it's just appeared above my wrist where the pain is already.

For no apparent reason too, this morning, I was up at 3 a.m. with the "irritable" out of Irritable bowel syndrome (IBS) - which I was diagnosed with as far back as 1980. Actually, I'd rather have that than be clogged up and, I always hope I'll be losing weight ... but this repeated itself when I woke up again at 8 a.m. and through most of the morning, leaving me feeling tired, weak, nauseous and with horrible cramps in my stomach. I felt too ill to do much more than lie still and really couldn't concentrate on anything other than the simplest of banal tasks.

Of course I want to feel annoyed at not getting things done, but I dare not overstep my capabilities to do them, or I slow down my recovery time from days to weeks or months. And I cannot either allow myself the "luxury" of the stress.

Is this a particularly bad day? No, not really.

Probably 1 in 10 are this bad and 6 in 7 are not far off. Nothing life-threatening, you say, but imagine feeling this bad, that often, day in, day out, for years.

Sunday, 29 March 2009

Right now I'm having to take deep breaths to cope with chest pains, which I'm sure were caused partly by stress (I don't believe they always are, exclusively), because, once again, mother has pushed me beyond the limits of endurance and I finally had to tell her that I'm trying to do something and that my door was closed for a reason. (Both true.) Yes, I shouted at her and yes, I feel entirely justified. 

And, no I will not feel guilty for upsetting "a poor little old lady." The boot, as they say, is very firmly on the other foot. Of course, publicly, she claims to be the victim and the hard of thinking, who do not even consider getting to know me or actually checking the facts, fall over themselves to believe her.

Earlier she'd already intercepted me to ask, in a tone that sounded like the sort of panic akin to the ending of the world as we know it, had I changed my clocks. So, for the umpteenth year in succession, I reminded her that computers change themselves (so does my mobile phone I use as a watch), so she had no need to tell me. Anyway, even if they hadn't, the world - probably - wouldn't have ended.

Yes, I know the incident sounds like absolutely nothing, taken out of context, but her entire tone and timing made it a clearly deliberately unwarranted (and unwanted) disturbance. Oh, mother probably believes her own hype: that only she - and certainly not I the ignorant child - could possibly know about clock changing and thus she was being helpful (in control), or feels justified in wanting to get my attention, but, considering what she's been doing to me, I feel no guilt and no compulsion to give her any and, certainly not just because she WANTS it now, paying no attention to how I might feel and what my medical needs are.

There are plenty of other reasons why I'd shut my bedroom door, but the one I feel most justified for today - apart from the probably obvious and necessary stress avoidance - is that mother was yet again using spray polish in the house. She is well aware that I've been allergic to all household sprays since, goodness knows ... before I reached puberty anyway and, polish sprays (along with hairspray that she's also been insisting on using a lot lately) are among the worst for me.

This is not something she's forgotten, because only the other day I'd reminded her, YET AGAIN, that I just can't have them in the same house as me. It's partly because of the allergy symptoms (believe me this is severe enough and the headaches totally crippling), but also because exposure to these chemicals causes flare-ups of all my ME symptoms. That's well documented and she knows, because (stupidly) I told her, because it seemed the logically correct thing to explain it.

And that was a relatively pleasant discussion, where I had explained once more - and she seemed to understand and accept - that I've always had to do all my dusting in my homes with a damp cloth and a little vinegar. (Cheap, ecological, non-harming ... surely adopting this method is good and no hardship?) She claims she remembers everything. In fact, she seems to do so - well, certainly all the things she WANTS to remember - so, what is she doing? Yes, I really do think that now she has the knowledge she is doing things to upset me deliberately.

Because I immediately become breathless and nauseous, start coughing - it provokes chest pains too - when I'm exposed to these substances, if she refuses to avoid their use, all I can do is to shut the door to keep away from them and try my best to mitigate the effects - after all, who would want to feel more ill? But not even that works, because she will use any excuse to open the door (doesn't knock, or if she does, doesn't wait for an answer) and twice more this morning, she's barged in, first wanting to know if I wanted her to clean in my room.

What makes that "inappropriate" and unnecessary is that, she has not done so before. First, because I certainly wouldn't expect her to clean my room, secondly, I need to do it my way and, when I have the energy, etc., to manage and pace my symptoms and, I need to do it myself because of the cats who are still hiding and scared of everything here. She knows all of that and that I cleaned the room not long ago (certainly not long compared to her cleaning frequency.)

Then she asked if I would do it - yes (obviously.) Now? "NO, I'm doing something", I said (pointing at the computer screen, though she could see I was anyway) and her reaction; the disappointment and frustration that flashed across her face, was like a 1000-word picture. She seemed most upset that I would not jump, disturb what I was doing to do it right now, this minute, on her schedule, to suit her wants. And she still just couldn't accept a negative answer, because 30 seconds later, she had barged in again (didn't even knock) to whine that she is only trying to help, which is when I shouted to cut off the whole pathetic insincere diatribe.

It isn't worth explaining to her, but it's obvious that, if she really was trying to help, she'd a) let me rest and / or do things undisturbed b) allow me some basic respect and privacy c) not use chemicals in the house, etc., ad nauseam. Obviously, one thing I could do (again, I think justifiably) is to put a lock on the door, but I know doing so would create a huge reaction and argument.

It's already bad enough that, as soon as I began closing the door to the room, the crazy woman started going outside the front of the house and pressing her nose up against the glass to the window of my room, trying to see in.  Yeah, really!

There are net curtains, but it is still possible to see in, so for this reason and because it dawned on me that others would be able to see my laptop, I now keep the curtains closed all the time. I often also suffer from an over-sensitivity to light; it's better than looking out at a crappy wall and it's necessary on the mornings when the sun reflects on the screen. Of course, as soon as I began keeping the curtains closed, was when she decided that she could open the door to my room whenever she wanted to. And that she does, despite more than once, I've told her that I don't care if the house is on fire (if it were, the alarm would alert me), so she has no reason whatsoever to open that door.

Of course, I can't stay in the room permanently. I have to go out to the loo and, the strength of the waft of polish is so strong the cloud hit me like a wall. I know that I'm super-sensitive, but it seemed excessive. Is that deliberate too?

Another of the things that (again, since I was a kid) have always upset me are air-freshener sprays - I also seriously disapprove of them on ecological grounds - and, yet again, this is something that has been discussed over and over again in recent months, reminding my mother that these cause me problems (allergies, headaches, etc.) Yet, I've heard the spray and smelled air freshener - she's done this early in the morning when she's thought I was asleep - that alone suggests that she knows she's doing wrong - and refuses to desist.

These are not the actions of someone trying to be "innocently" helpful.

Thursday, 26 March 2009

Getting help

Reach out, we are told and my mental health needs it. So I tried. Yesterday, after the latest attack, I spoke to a lot of organizations for advice. Age Concern (echoed by several others) advised me to speak to doctors and health visitor, to adult social services and to a lawyer. All of which I've done, using the small amount of energy I can muster. However, I don't know where this mythical help comes from, because where I say AWAITING CALL BACK, I mean, even if you're reading this in the year 3000, I'm still waiting. In reality, there just isn't any help out there.
  1. Spoke to Citizen's Advice Bureau. Had a long chat with the supervisor, but they're at a loss for practical suggestions. AWAITING CALL BACK.
  2. Spoke to local Disability Information Service. Asked if they had any ideas, since they might have dealt with situations where disabled people needed help to defend themselves against abuse. AWAITING CALL BACK.
  3. Spoke to Refuge and Women's Aid who at least listened to the story, acknowledging the similarities in the abuse pattern. Practically though, they could only suggest giving me their local outreach number a call. That was a recorded message that told me to phone the very same main helpline that I'd already phoned. Only other Women's Aid Refuge and Advice line – NO REPLY.
  4. On a friend’s (well, a friend of my mother's actually) suggestion, spoke to local Age Concern, who says they have no advice line locally, but have dealt with lots of similar situations where the old person is “sweetness and light” publicly, but turns on their “nearest and dearest” and says this behaviour sounds just like the first signs of dementia. She suggested I speak to Social Services, to the doctor and to a solicitor (the latter to send my mother a “cease and desist” letter, to put it in writing that she must stop “blackening my character”. I can't see her taking a blind bit of notice, but I can see the use in having such a document.) Says I can call her again if ever I need to.
  5. Social Services, told to ask for Duty Care Manager, Adult Services. They would only be able to put me into a B&B – which would not allow the cats - so I haven't phoned them and am leaving that for the absolute last resort.
  6. Spoke to Community Health Visitor at GP surgery. She was going on leave, but promised to speak to both my mother's usual doctor and mine, with a view to coming out to see mother (only if mother gives permission – though she would not be told why) to assess the situation. AWAITING CALL BACK.
  7. Spoke to a local solicitor and explained the idea that Age Concern put forward. Will speak to a couple of the partners and discuss what might be appropriate action. AWAITING CALL BACK.
  8. Phoned Victim Support, but got NO REPLY.
  9. Spoke to PALS who merely suggested ringing the following: Carers Active Listening Line; Carers Helpline and Carers Together.
  10. Spoke to Carers Active Listening Line, who did, at least, listen. Suggested that I should book myself a double appointment to see my mother's GP and explain the situation – she suggests writing down some examples of the strange behaviour in bullet points, with a view to them calling mother in for a “standard old age MOT” (this would tie in with the Health Visitor's work) to assess whether this is dementia, some other mental problem or just plain bloody cantankerousness. Whichever diagnosis, she says, at least then we would know what we're dealing with. She also thinks it's important that I tell my mother's doctor that I am her carer, on the basis that I'm here, expected to do the cooking, as well as being the only family member in existence (which I did, when I first got here.) She offered the most empathy when I explained what the problem was and what had occurred today, saying, “you must be distressed.” Understatement! One interesting question she asked was if my mother allowed me any privacy and to my reply to that, could I put a lock on the door? Had clearly heard of similar cases. 
Yes, there were a few items I could have followed up and chased, but I figure if they don't call me, they don't want to help and I don't have the energy to keep badgering them for potentially no return. It's a frightening, isolated situation.

Wednesday, 25 March 2009

Car Number

Not the actual registration, but ...
Wednesday, 25 March 2009
: Matters came to a head again today, when I finally met a woman my mother knows - who it transpires is in contact with a so-called [former] "family-friend". 

This woman, I learned, took it upon herself to inform him what I'm supposedly doing wrong, the result of which this man turned up here in Nov 2008 to give me the Inquisition and was ready to throw me out on the street on the basis of the false accusations my mother has made against me.

My mother has now admitted having told this woman that she "did not believe there was anything wrong with me", but has since claimed that she has now explained the truth of my situation (and official doctor's diagnosis, etc.) 

What transpired PROVES categorically that the truth has not been explained, because, if it had, the woman would not have behaved towards me as she did.

Push my mother on the issue and she says it's not her fault (nothing ever is), if these people won't change their attitudes. They've been told, she claims. She then criticises them behind their backs for being “like that” and the sort that “fly off the handle”, etc. It seems clear to me that mother has been (deliberately) surrounding herself with the sort of people who will most readily accept her one-sided telling of a story. More telling is that this type seem to be the ONLY ones left who pay her any regular court. This way, not only are they the sort who will accept her stories without considering both sides, they are those most easily manipulated into supporting her, but she can also blame them for doing so.

They're too daft to see that they've been manipulated and I'm sure they have no idea that, whilst she slags me off to them, she also slags them off to me.

For a while I toyed with the idea of having some responsibility to point this out to them. Since, despite all demonstrable the evidence in my favour, they persist in helping her to bully me, I no longer feel much compunction to do so. They're grown-ups. They've already decided that they are not going to believe me, which does bother me, but all it really says it that these are the opinions of idiots.

Anyway, it was already obvious to me that her “truth has been explained” claim was false, as it was in relation to the neighbour who had verbally attacked me.

In both cases, it's clear that mother has avoided doing anything whatsoever. I would estimate that this is because she can see no way to backtrack on what she's already said without admitting fault. She always has a ready excuse why fault always lies with me, someone else or is the result of mere ignorance – i.e. poor thing, she knew no better. Such ignorance, in law, would be no defence. 

Mother also claims that she has only told this woman and the woman next door that she "did not believe there was anything wrong with me" and no-one else, but what she doesn't know is that I have been told from another source – one who can see right through her, who came to see me when she knew my mother was out - that mother has been telling the same story to an entire group (club) of people, so I imagine that she's slagged me off in a fairly widespread manner.

Despite having the logic explained several times, mother absolutely refuses to acknowledge that saying “did not believe” is the same as telling people that what I say must be untrue and that infers that I'm a liar. Everyone else I've put this to, agrees that would be any reasonable person's understanding of her statements. Most also agree that this appears to be carefully measured phrasing.

The so-called family friend had also said that "people don't want to meet me.” I now know he was referring only to this one woman and, obviously, as she hadn't ever met me and no-one else she knows, other than him and my mother, knows me, her judgement also can only be on the basis of my mother's lies.

He also said "people" don't want to come to the house, and with it he inferred that this is because of my presence and because I am such a horrible person, but what I've been told, again from this other source (who incidentally is one of my mother's friends), is that it is my mother who TOLD people not to visit, but she's been giving them an entirely different excuse - because she did not want to be seen looking awful (she's that vain) while she was undergoing medical treatment.  

It’s absolutely obvious that she’s telling different stories to different people, deliberately, to create arguments, manipulate them into attacking me, present herself as the ‘victim’ and remain the centre of attention.

Anyway, when I realized that this particular woman was coming to pick my mother up today - I'd guessed because she was being so carefully evasive and non-specific about who was coming, so I asked my mother who she was alluding to - that I decided I'd go out and attempt to speak to the woman. 

The wrong is being done to me and I have every right to defend myself.

At this point, I merely walked away in the direction of my room and had said absolutely nothing about my intentions - mostly because I was still thinking what I would do and say, when suddenly I heard mother stage whispering (she often does this) something about "car number". At first, I thought she was thinking she would call their car / mobile phone to put them off. But no, for some reason, she had become fixated and fearful - literally panicking - over the idea that I would be able to get their car registration number. Why, to do what, I have no idea. 

Then she began walking repeatedly backwards and forwards between the front door and the driveway to see if they were coming (presumably, so she could catch them and get away quickly.) Then said she thought they were here and was out of the door, slamming it, gone, with not another word. They hadn't arrived. 

Next, I could see mother trying to hide like some fugitive behind the wall at the end of the driveway (from my room, I can just see that) and was "looking over her shoulder" (round the corner of the wall) toward the house to see if I was looking. Clearly the behaviour of someone who feels they have something to hide.

When I heard a car coming into the close, I walked outside without undue hurry. By the time I reached the driveway, Mother had already got into the back of the car and had slammed the door in obvious haste and, I was just in time to hear her literally screaming out in panic, "Get away, get away," i.e. she appeared to be telling her friends to drive away quickly before I could do whatever dreadful thing she was sure I was going to do. Yeah, tell them the truth, obviously!

That was unexpected enough, but I kept my composure and signalled for her to open the car door and said in quizzical (OK, astounded) tone that I did not think "Get away, get away," was appropriate to say when her daughter was approaching, but "that aside," I said ... moving my gaze to the friend and her partner, and very calmly (believe me this took a LOT of work!) said to them that, when they had the opportunity, I would like to speak to them, because I think they are being told things about me that are not necessarily true. That's all I said, perfectly calmly.

At which they just flew off the handle and launched at me, unprovoked. My mother flatly denied saying "Get away, get away," and they backed her up also denying that she'd said it. F*ck me, I know what I heard and yet they made me doubt it, made me wonder if I'm hallucinating and going around the bend (and I think that's deliberately intended too.) They told me to "just go away". Then the woman got out of the car, ready to take a pop at me, but snapped something like she would not have me upsetting my mother! (Boot's on the other foot!)

Obviously, it's distressing enough to have my name blackened all over the place and to encounter so much open hostility towards me - made worse because I know it sounds like paranoia when I tell anyone the story - but since this now clearly involves several or maybe many people, I can't see how I can ignore it. 

And I can't, because mother BEGS me to do nothing and my instinct and 52 years of experience of her bullying, tells me to speak out and stand up for myself.