Marriage guidance
Jackie Fill
on me. Suddenly crashed this evening, probably due to a couple of sessions
of wallpaper stripping earlier this week. Oh I ache so badly, haven't felt
this bad in ages, I just had to lay flat and not move.
I don't talk to anyone about my ME except you lot and my parents. I've never
spoken to my GP about how it affects me - I've just got on with my life as
best I can. My husband has never been supportive about it, or about anything
else medical, and not particularly about the children, unless pressed.
Having David ill for the last 3 years has been a constant worry, and when Jo
became ill in December I didn't know how I was going to go on, but I have
just about coped day by day. David is now getting worse as the months go by
since relapsing after Christmas, and is demanding a lot from me emotionally.
I've also been worrying terribly about their lack of education.
I can't sleep at nights. I am waiting for a hospital appointment at the end
of the month to have a breast 'lumpy area' checked, my periods are all up
the wall, and I have no interest in se.. [won't say it cause I don't want
spam] which is putting a terrible strain on my marriage. Mike says we should
go to marrige guidance, but I know what the problem is - I'm not well and
I've got too many worries and too little support, but that doesn't seem to
count.
Anyone got any useful advice? I'm not sure I can cope much longer with all
this.
Jackie
Heather Knowles
>
>Anyone got any useful advice? I'm not sure I can cope much longer with all
>this.
>
Oh, Jackie, I am *so* sorry. I can't offer any helpful advice - my
marriage is none too good, partly because of my ME, either, but you can
have a *hug* and an offer of an e-mail chat any time you want one.
Did you really post that at half-past four this morning??
--
lotsa luv, Heather xxxxxxx
'I thought it was a dragon, but that's because I was looking at it upside down
from underneath...' HMK 20-2-99
Jodi
>Anyone got any useful advice? I'm not sure I can cope much longer with all
>this.
Not that I have a brilliant relationship track record, but it might be
worth going if there's a chance of making your hubby understand just how
you feel and what kind of support you need.
Jodi
cary charles
Jackie Fill <jac...@the-barns.freeserve.co.uk> wrote in message
news:7eejg0$d3n$1...@news7.svr.pol.co.uk...
> Sorry folks, I've hit one of my 'downs' again, things are really piling up
> on me. Suddenly crashed this evening, probably due to a couple of sessions
> of wallpaper stripping earlier this week. Oh I ache so badly, haven't felt
> this bad in ages, I just had to lay flat and not move.
Ooooooops! I know that feeling. I have hit a rock today too, and yes, I too
have been stripping the paper from hell ( a plastic undercoat would you
believe!) Sorry you are feeling so rough. I will try and give you my
reactions to your posting, but please do not be offended if anything should
offend you, if you know what I mean :o) Hopefully you know I am coming from
a caring direction by now :o)
>
> I don't talk to anyone about my ME except you lot and my parents. I've
never
> spoken to my GP about how it affects me - I've just got on with my life as
> best I can.
This strikes me as possibly part of the problem. The fact that you are
actively *not* talking about the illness that shapes so much of your life,
except with us and your parents, means that you will be sending out mixed
signals. It may be that you try to cope *too much* in order to placate your
husband, to skim over his tuning out of your situation. If that is true then
you are bottling it up because you just will need to have a good
understanding and support from your partner. I wonder how much of you is
invested in not being real about your illness so that it does not raise
deeper issues about your relationship. My stress escalates astronomically if
Peter pressures me, albeit unconsciously, to behave beyond my means. My
inner needs repress and I try to keep up, then I get more and more down . .
. and so it goes on - the only thing that stops that dreadful cycle is Peter
realising that he is demanding unrealistically, and that that is actually
making me worse.
It is really difficult if people will not talk about it, as the DD really
does invade and shape our responses to so much of our lives. If you cannot
refer to it without walls going up, then you are quite simply dealing with a
person who wants to deny your situation for some reason - perhaps because it
increases their responsibility, or because they find it hard to give more,
or because they are afraid etc.
I am fairly lucky. Peter eventually realises when he has pressured me and
turns things around, much more promptly nowadays. My mum is good with it and
really tries to adapt to it and build my ability to be *sensible* and not
over-do things. However, the rest of my family talk about it only if I am
not in the room, so I end up feeling unable to defend myself - since if I
mention it the room is either evacuated promptly or I am drowned out by
another family member talking about something really trivial. Mass denial I
guess. And Peter's family are not any better at all. To them, one is either
a total coper or a no hoper, which makes it very difficult. It hurts that
they judge me collectively yet walk out of the room or just go totally
silent if I mention my illness.
bottom line is that the illness is a part of our lives, a defining part, and
we need to be able to express it in various ways, we need to be able to let
off steam at how it limits us, we need to be able to ask for help if we have
reached our limit, we need to be able to be honest about our situation
without being made to feel shame or ignorantly treated as neurotic. Believe
it or not, we have the right to ask for those things because we did not
choose this illness, it chose us!
My husband has never been supportive about it, or about anything
> else medical, and not particularly about the children, unless pressed.
Well, this saddens me. It seems like he is quite off centre for some reason
and you are in a position where you have to fill the holes he is leaving
empty, not only for yourself, but for your kids also. That is a burden too
huge for you to shoulder with this illness, and really something has to
give.
If he is uninformed, he has the responsibility as spouse and parent to *get*
informed. If he is afraid of medical things in general, he needs to deal
with it because his fear is causing you to over-compensate and burn yourself
out. If you go along with that, you are enabling your illness and the
illness of your children to continue - believe me, I know that is not the
way forward. My mum overcompensated for my dad for years and I got ill
because I picked up all the stress. Don't enable imbalances to continue.
Tackle them and be real.
You should not have to 'press' your husband for understanding or support -
something is wrong. One wrong thing is that you have an illness - we know
that is an imbalance in the situation. But there is also a wrong thing being
expressed by your husband's unwillingness to deal with the situation and be
supportive. It might be a touch of male pride getting in the way - he may
feel he does not have the stamina to deal with it all, but be too ashamed to
say.
If so, then you might have to say it for him, or at least intuit it for him
and look at ways you can *both* get help. Such as paying for a cleaner to do
the house once a week, or a gardener to mow the lawns, or someone to do the
shopping or whatever. Point is, at the moment, the straw is breaking the
camel's back. I think you are carrying too much and it will make you suffer
health-wise. I would not wish it on you for the world. Please be real and
look at how pressure can be eased, in any way!
> Having David ill for the last 3 years has been a constant worry, and when
Jo
> became ill in December I didn't know how I was going to go on, but I have
> just about coped day by day. David is now getting worse as the months go
by
> since relapsing after Christmas, and is demanding a lot from me
emotionally.
> I've also been worrying terribly about their lack of education.
All of these things sound rational and I understand them totally Jackie. You
are in a hellish situation, it has to be said. I will dare to say something
here that may be controversial, or may not. You see, I got the full-blown DD
after my father tried to drown me and also as he was there less and less for
me and my mother, though of course that was a painful thing to face.
I think that there is an emotional component to this illness. In other
words, I think that it is *affected* by the emotional waves we pick up -
especially in the home and from our parents. Now if either of your children
are feeling that their father is not supporting them, there may be an
escalation of the symptoms as a call for help, a sign of distress. To me
that is a key element in how this illness works. It kicks in most if you are
feeling silently judged or shamed, because then you punish yourself mentally
for not being well, and so you get worse. I know that I needed love and
support from my dad, but that when he could not give it, I became more and
more distressed inside. An anxiety built and my symptoms increased. This may
not be the case for your family, but it certainly applied to me. Children
are barometers, in my opinion, and they often signal with ill-health the
problems that the family is facing.
>
> I can't sleep at nights.
er . . . . my immediate reaction to that is that Kava will probably help,
even if a cheaper brand. It is much better than almost everything else.
Remember, it is the second most powerful narcotic to opium. You can be
pretty sure at that rate that it will work for sleep problems! Important to
deal with, since lack of sleep will take away your spirit and make you more
likely to crack under pressures.
I am waiting for a hospital appointment at the end
> of the month to have a breast 'lumpy area' checked,
Sheeez! that alone is enough to completely stress you out, Jackie! I hope
your husband is being supportive on that issue at least. If he is not then
it really is a poor show. Feel free to email me if you need additional
support and I am sure this ng will be there for you on the subject too.
Coping with lumps and CFS-ME is worthy of a strand or two IMHO. Perhaps
there are some support groups for this kind of thing too?
my periods are all up
> the wall,
Well they would be wouldn't they, honey, because you are in distress. I wish
I could give you a big hug right now! I don't know, I cant do much except
write here, but I really do feel for you. Bring the stress down and you will
probably find the periods settle - not that I am an expert in this field, of
course ;o) Of course, I suspect you will have to be firm with your husband
about the stress going down in concrete ways, not wishy washy desires that
might never happen.
and I have no interest in se.. [won't say it cause I don't want
> spam] which is putting a terrible strain on my marriage.
You know, se.... is an expression of love, support and closeness. It is a
merging. Therefore, it does not surprise me that it is not exactly the
foremost thing on your mind. You are not really feeling supported and your
husband is giving you limited closeness - provided the health issues do not
come into the picture. I think you would have more interest in sex if you
were closer together at other times, but for that to happen, your husband
has to face some realities. Again, interest in sex is a barometer of a
relationship. You are feeling something is wrong and reacting. It is
actually very useful, and might be worth listening to. It is easy to be
blamed if you are the one not feeling so sexual, but remember that often not
feeling so sexual is a reaction to something, often a need to protect the
self or conserve energy for other battles.
Mike says we should
> go to marrige guidance, but I know what the problem is - I'm not well and
> I've got too many worries and too little support, but that doesn't seem to
> count.
Interesting phrasing there Jackie. Because it does not count to Mike, you
write a blanket statement that it 'does not seem to count'. Well you and I
both know that it *does* count. HUGELY. These are all extremely valid points
and it sounds like Mike is being an emu with his head in the sand, yet
wanting everything to run better. Well, he cannot have it both ways. If he
wants things to improve, then he has to *own* the situation that he is in -
that his partner and children are not well.
Christ, he needs to sort himself out and see the damage he is doing by being
so narrow minded. Maybe Marriage Guidance would be a good thing, not for the
lack of sex etc. which may be why he is pushing for it, but for bringing him
face to face with the damage his ignorance and distance is doing. Truth is
you need support from him for very sensible reasons, so the question mark
hovers over why he is finding it so hard to be sympathetic. Sounds to me
like he needs counselling at least.
On a final note, one thing may be that he is holding out for an 'official
diagnosis' - I am not sure if you have one. If so, then he really is being
stupidly rigid and needs to just look at the reality before his eyes. As my
doc said, 'medicine does not know everything yet, and no test really exists
yet'. In light of this, a bit of compassion and getting informed is
required - by him, not you!
>
> Anyone got any useful advice? I'm not sure I can cope much longer with all
> this.
Ah, well I hope this is of *some* use, Jackie. A hard situation, but at
least you know we are rooting for you. Don't let this illness erode your
self-esteem or your knowledge that you deserve fairness and support. If he
behaves differently in cases of broken legs or twisted ankles etc. then you
know he is being dim over the illness and over-rigid. If he is just as
distant over such things, well, shame on him. You deserve better than that -
go claim it back girl! With or without therapy, some straw needs to lift off
a certain camel's back. You posted here because you are upset. Rightfully
so.
Your needs are not out of line or overstated - I would not have spent two
hours writing this message if that were the case. You just remember that
next time the subject comes up. Your needs are THAT valid and reasonable.
Don't give up!
More than that I cannot say. Just that I hope things turn around for you.
Take care Cherub!
BFN,
Cary ;o)
Steve Wells
say anything but that talking to somebody about the problems may help.
Relate (marriage guidance) may be a good option but you need to agree before
you go what the agenda is that you both want help with. It is encouraging
that your partner wants to discuss the problems as well, but do you agree
about what it is the problem?
Some of it could appear from where I am that you are maybe trying to do too
much, wallpaper stripping and emails at 4.30 am...... When I ache too much
I usually try and stop, complete rest, but I know how difficult it is and I
haven't got kids to worry about.
But all the books talk about the strain that any long-term illness puts on
relationships. To take a quote from "Running on Empty" by Katrina Berne.
"But the illness remains a lurking enemy in our households, producing
tension and disruption. Even with the knowledge that the problem is the
illness rather than a lack of love between the partners, old problems
escalate and new ones develop. It's tough to hang together and work as a
partnership with ME in the way."
And you have got sick kids as well. If you could get someone to look after
the kids I might be tempted to suggest a weekend away to relax and talk the
problems through on your own, but Relate might be a good second best.
All I can do for now is send you both my best wishes.
Jackie Fill wrote in message <7eejg0$d3n$1...@news7.svr.pol.co.uk>...
>Sorry folks, I've hit one of my 'downs' again, things are really piling up
>on me. Suddenly crashed this evening, probably due to a couple of sessions
>of wallpaper stripping earlier this week. Oh I ache so badly, haven't felt
>this bad in ages, I just had to lay flat and not move.
>
>I don't talk to anyone about my ME except you lot and my parents. I've
never
>spoken to my GP about how it affects me - I've just got on with my life as
>best I can. My husband has never been supportive about it, or about
anything
>else medical, and not particularly about the children, unless pressed.
>
>Having David ill for the last 3 years has been a constant worry, and when
Jo
>became ill in December I didn't know how I was going to go on, but I have
>just about coped day by day. David is now getting worse as the months go by
>since relapsing after Christmas, and is demanding a lot from me
emotionally.
>I've also been worrying terribly about their lack of education.
>
>I can't sleep at nights. I am waiting for a hospital appointment at the end
>of the month to have a breast 'lumpy area' checked, my periods are all up
>the wall, and I have no interest in se.. [won't say it cause I don't want
>spam] which is putting a terrible strain on my marriage. Mike says we
should
>go to marrige guidance, but I know what the problem is - I'm not well and
>I've got too many worries and too little support, but that doesn't seem to
>count.
>
>Anyone got any useful advice? I'm not sure I can cope much longer with all
>this.
>
>Jackie
>
>
>
>
Heather Knowles
.....a brilliant, coherent, articulate post that has more sense in it
than almost anything I've read on ME so far.
Nice one, Cary. And Jackie - that's what I meant to say, but couldn't!
--
lotsa luv, Heaven xxxxxxx
Jackie Fill
cary charles wrote in message <7eg701$a5c$1...@news8.svr.pol.co.uk>...
loads of stuff!
Sorry, can't reply at the moment. Everything's OK-ish, hoping to have a
heart to heart this evening when kids are in bed. Still feel low, but things
can only get better.
Thanks to everyone for support. Will reply another day,
Jackie
katya robin
cary charles >
>Jackie Fill <>> Sorry folks, I've hit one of my 'downs' again, things are
really piling up
>> on me. Suddenly crashed this evening,
don't be sorry , as you've said yourself to other troubled upscum posters
as a parent i firmly believe that is impossible to pace your ME reserves
unless you have the most excellant support in the universe !
>. I have hit a rock today too, and yes, I too
>have been stripping the paper from hell
post bank holiday over- doing it, perhaps?
i'm clearly a victim of that too ;+(
>>
>> I've just got on with my life as
>> best I can.
maybe you've been too brave.
i know that my needs as as dp were ignored by ss until i got official
diagnosis., and i decided to look out for no. 1 for a change. suddenlt
others started taking notice.
and i think i ignored my own problems and battled on and made myself
worse....probably still doing it!
i'm learning to say NO i can't do that cos it'll make me relapse
and i'm learning to say i have to go in wheelchair so i'm not a hobbling
wrecl later.
i know it's so hard in the family to be unable to meet physical and
emotional demands.
i've cut down on the practical stuff but i find the emotional needs of the
kids, partner and parents exceptionallt draining.
but i want them to accept me with my disability. cherry, my daughter,
said'you're the best mum in the world, even though you're disabled'
i think the message is getting through MUMS NEED LOOKING AFTER TOO!
>
>The fact that you are
>actively *not* talking about the illness that shapes so much of your life,
>except with us and your parents, means that you will be sending out mixed
>signals.
. i think cary's right about the mixed messages. people are very unaware of
non visible disabilities of all varieties not just ME, think of angina
cancers depression...
without official diagnosis it's very easily done
how's your husband realise how ill you are now? or does he assume that
you've recovered?
my partner finds it v difficult to come to terms with the severity of my
accumulated illnesses and he's got me himself. it's hard to face the loss of
a loved one, and ME brings about much loss.
.> Please be real and
>look at how pressure can be eased, in any way!
now you've both kids off school you have got to find some time for yourself,
and some space to do your own thing !
you cannot be superwoman
/ get some bloody domestic help !! every week
and shopping help, and what about a painter and a decorator..
repeat you are not superwoman...you'll do yourself an injury...believe i
know what i'm talking about ;~{
get some microwave dinners!
give yourself a break from looking after other people's kids
is there an essex carer's centre. they can be very good.
they would define you as a disabled multiple carer.
>>> I've also been worrying terribly about their lack of education.
health and happiness 1st, education later !
no point being anxious about what you can't do anything about.
David's probably too ill for formal schooling atm.
it could lead to yet another relapse.
please do join education otherwise, there's loads of lovely people there who
would understand your position, and meeting other kids out of school would
reassure you!
go on the email home education list.
i'm not doing any formal educational work with tommy, and he's due to start
secondary school next sept. i doubt he'll be going back to primary school in
between.
if the local authority are messing you around why not get a few private
lessons for the kids. or perhaps share tutor costs with some people inEO?
some friends of mine are getting their homehelp to teach their son spanish
and cookery at the same time !
or perhaps music lessons or just music appreciation.
but please don't worry
education should be a joy, not a chore.
maybe the time just aint right, but it will be sometime.
>
>. You see, I got the full-blown DD
>after my father tried to drown me and also as he was there less and less
for
>me and my mother, though of course that was a painful thing to face.
it is well researched that stress has powerful physical effects, and of
course me leaves one incapable of dealing with stress at all.
> I am waiting for a hospital appointment at the end
>> of the month to have a breast 'lumpy area' checked,
>Coping with lumps and CFS-ME is worthy of a strand or two IMHO. >
> my periods are all up the wall,
I posted a question abour hormones and me[ on meactionuk ], will ask Vicky
gifford perisiion to forward.
>
>Mike says we should go to marrige guidance, but I know what the problem
is - I'm not well and I've got too many worries and too little support
sometimes all couples need some neutral ground to work things out.
even if it's just getting out together as a couple [ no kids ! } so you can
have some time and space together away from constant stress and demands.
in stead of waiting for mike's approval why don't you just go ahead and
organise some practical support? it's worth the money. you might be
surprised with his response.
please dopn't be upset by anything i've said.
i really hope i haven't said anything inadvertantly insensitive.
please take care and be kind and gentle with yourself ;~)
[ is that from Fairy washing up liquid?]
must go now, my arm's driving me mad, it feels like the circulation has
halted in the plaster :-[
can't work out how to sleep, and wash with this plastercast on...any tips?
love and virtual tea and chocolate cake
kat
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cary charles
Heather Knowles <heaven...@fanged.demon.co.uk> wrote in message
news:rmzmuTA3...@fanged.demon.co.uk...
> cary charles <ca...@charlesc.spamless.freeserve.co.uk> writes
>
> .....a brilliant, coherent, articulate post that has more sense in it
> than almost anything I've read on ME so far.
Realllllllly? Ooh, I will have to have a read of that then. :o)
BTW, the flattery will get you everywhere Heather. Shiny green poofs love it
;o)
BFN,
Cary ;o)
DinkiPixie
>Sorry folks, I've hit one of my 'downs' again, things are really piling up
>of wallpaper stripping earlier this week. Oh I ache so badly, haven't felt
>this bad in ages, I just had to lay flat and not move.
Oh dear. It's so easy to overdo it when things are a bit better. Still, at
least the stripping's done - or is there more to do?
>I don't talk to anyone about my ME except you lot and my parents. I've never
>spoken to my GP about how it affects me - I've just got on with my life as
>best I can.
Is it too difficult to speak to your G.P.? Doesn't sound a very good
relationship if you can't mention something so important. Sorry to be
blunt, but you're worth better.
>My husband has never been supportive about it, or about anything
>else medical, and not particularly about the children, unless pressed.
Er, about to put my foot in it, but a similar feeling to the above :o/
>I can't sleep at nights. I am waiting for a hospital appointment at the end
>of the month to have a breast 'lumpy area' checked, my periods are all up
>the wall,
The hormonal fluctuations are likely to have an effect on breast tissue.
It's most probably benign but if it isn't please don't worry overmuch -
you're doing the right thing having it checked, and people do survive,
you know - I did :o]
> and I have no interest in se.. [won't say it cause I don't want
>spam] which is putting a terrible strain on my marriage. Mike says we should
>go to marrige guidance, but I know what the problem is - I'm not well and
>I've got too many worries and too little support, but that doesn't seem to
>count.
It might not be such a bad idea having help. Just the opportunity for
someone else to point out some things that he hasn't seen for himself.
Not what he expects to happen perhaps but you can remind him it was
his idea.
There are some things here over which you have control, so things aren't
hopeless, even though they might seem to be just now. *Hugs*
--
Angela Touchstone
Personal site http://www.dinkipix.demon.co.uk/
ME home pages http://www.dinkipix.co.uk/me/bed.htm
E-mail: dink...@dinkipix.demon.co.uk
cary charles
DinkiPixie <dink...@dinkipix.demon.co.uk> wrote in message
news:w98fdHAt...@dinkipix.demon.co.uk...
>
> Oh dear. It's so easy to overdo it when things are a bit better. Still, at
> least the stripping's done - or is there more to do?
Yes I have been pondering this issue and have come to a conclusion. Jackie,
it is perfectly to be expected that your husband finds it difficult that you
are a stripper ;o) Just watch Jerry Springer a few times and you will see
what I mean!
> The hormonal fluctuations are likely to have an effect on breast tissue.
> It's most probably benign but if it isn't please don't worry overmuch -
> you're doing the right thing having it checked, and people do survive,
> you know - I did :o
Thanks for being so open about that Angela. I am sure it will be so good to
hear. You have gone on to be such a positive force for all of us, so it
should inspire!
> There are some things here over which you have control, so things aren't
> hopeless, even though they might seem to be just now. *Hugs*
Very good point Angela. There is a lot of potential for growth and movement,
especially since Mike (think I got your hubbie's name right Jackie!)
suggested counselling. He may react a bit if the tables turn toward him
though, so be prepared for emergency reactions like wanting to not go etc.
Quite common.
>
BFN,
Cary :o)
Jackie Fill
DinkiPixie wrote in message ...
>Oh dear. It's so easy to overdo it when things are a bit better. Still, at
>least the stripping's done - or is there more to do?
No, it's all done, thank goodness! I felt fine when I was doing it, and made
myself have a one-hour rest mid-morning and at lunch time, but started to
feel dreadful a couple of days afterwards, so it was probably that :o(
>Is it too difficult to speak to your G.P.?
Well, I learnt through bitter experience that it was a waste of time talking
to my old one, and since I've changed GPs I haven't discussed it in detail.
When I went to register I told her that I had it, but I had the children
with me, and was concentrating more on getting something done for them. She
asked me how it affects me and I said <stupid voice> 'I get very tired ...'
and I couldn't think of anything else! I had been planning to make an
appointment to talk just about me but (ha ha) she's been off sick, and the
other doctor at the practice is my next door neighbourh and I know he's not
sympathetic.
'>>My husband has never been supportive about it, or about anything
>>else medical, and not particularly about the children, unless pressed.
Yes, I know, I know. I've done a lot of thinking over the last couple of
days (talking to you all about it has helped tremendously) :o) and I wonder
why I've put up with it for so long. It wont' be easy for him to change
though (if not impossible), as it's how he has always been - it's just never
really mattered that much until now.
>The hormonal fluctuations are likely to have an effect on breast tissue.
>It's most probably benign but if it isn't please don't worry overmuch -
>you're doing the right thing having it checked, and people do survive,
>you know - I did :o]
Thanks for that! I am worried, and I'm not :o/ I am because a close
friend died of breast cancer 4 years ago, and I'm not because it's not a
defined lump, and more likely to be something else. I was going frantic at
first, and read up on it all, but came to the concusion I'll just have to
wait for an expert opinion! I'm going to hospital on the 26th.
Well, we had another talk last night (or rather I talked and he mmmed) and
we decided a few things like spending more time alone together, going out a
bit more, 'really' talking more (I'm not getting my hopes up about that one,
though!). Its not going to be easy, but I don't want to rush in to
counselling. We're superficially fine, but both unhappy below the surface.
I'll let you all know if we have any major breakthroughs, but I'd like to
leave it now, if you all don't mind? I've got loads of posts to answer, and
I feel really tired. I'm not as down about it all now, though - which is
nice! :o)
Jackie
Jackie Fill
cary charles wrote in message <7eg701$a5c$1...@news8.svr.pol.co.uk>...
Sorry I've been such a long time with my reply - it took 3 hours to read!!!!
:o) There was a lot of sound advice in there, and I've had a lot to think
about.
I've replied to most of it elsewhere, but there's just a few bits to add :
>the house once a week, or a gardener to mow the lawns, or someone to do the
>shopping or whatever.
I do have help with the cleaning for 3 hours a week, and we have recently
'employed' my uncle to help with the gardening, after he was made redundant.
My dad comes over to sit with the children whenever I need to go out, and
doesn't mind running the cleaner over (the hoover, not my cleaning lady!),
and has *always* got a sympathetic ear.
>> I can't sleep at nights.
>er . . . . my immediate reaction to that is that Kava will probably help,
Right! I am going to buy some Kava. Now are you happy? :o)
>On a final note, one thing may be that he is holding out for an 'official
>diagnosis' - I am not sure if you have one.
Yes I do. I saw Dr Betty Dowsett in 1992 and she
confirmed it. I said last night that I have never saught any help from my GP
about my ME, and he looked puzzled. It seems he thought my visits to the
Rheumatologist about the reactive arthritis were about my ME too. That dr
was the one who originally ordered blood tests and referred me to Dr
Dowsett,
bowel specialist, skin specialist etc, and was the first person to take me
seriously, but since diagnosis he has only been concerned with my arthritis.
That's all really. I'm still feeling tired and achy, and will rest up for a
few days now.
Jackie
p.s. Nobody's ever called me cherub before! :o)
Daniel John
Hiya Cary, and Jackie
I cannot stop posting today lol!
> This strikes me as possibly part of the problem. The fact that you are
> actively *not* talking about the illness that shapes so much of your life,
> except with us and your parents, means that you will be sending out mixed
> signals. It may be that you try to cope *too much* in order to placate
your
> husband, to skim over his tuning out of your situationgo totally
> silent if I mention my illness.
you know, I am exactly the same!!
I never tell my parents how I am feeling and they never ask! They think I
just don't like doing anything outside the house or something!
Yesterday someone from a local Ealing m.e support group phoned, and spoke to
my dad first. It was kindda weird, talking about my illness afterwards with
him! There is 150 people in my area, in this support group, who are sick,
that is really really scary! [Ealing is a large borough of London].
I am very sick at the moment, and my parent have noticed! I have oral thrush
and it is very nasty. Sadly it is not going away with normal treatments, and
the Dr is being called to my house tomorrow!
I feel like a giant mushroom *LOL*
I think that is so sweet of Cary writing a 2 hour message awwww :-)
I never have really confided in my parents anyway, they don't know how I am
feeling, or that I am gay, or loads of things!
Eek they do still love me and stuff, just not too supportive of my illness,
or they are and don't talk about it! LOL
anyway I hope things work out with you Jackie,
*hugs*
Dan
DinkiPixie
>
>DinkiPixie (that's me) wrote in reply to Jackie:
>> The hormonal fluctuations are likely to have an effect on breast
>> tissue.
>> It's most probably benign but if it isn't please don't worry overmuch -
>> you're doing the right thing having it checked, and people do survive,
>> you know - I did :o
>
>hear. You have gone on to be such a positive force for all of us, so it
>should inspire!
>
info.
BTW, Cary, I bought my first bottle of Kava Kava today. Me, influenced?
:o]
katya robin
>but I'd like to
>leave it now, if you all don't mind? I've got loads of posts to answer, and
>I feel really tired. I'm not as down about it all now, though - which is
>nice! :o)
we'll let it rest now
I guess you must have touched a raw nerve to get such over whelming response
!
and hopefully you'll get some p and q
Kat
Vernon Webster
message <7eg701$a5c$1...@news8.svr.pol.co.uk>
I can't think of many new points to add to Carry's comprehensive
reply. Please forgive me if I'm rambling on but I'm pretty tired as I
write and may not be saying everything in the best way. I just want to
try and add another dimention.
> Jackie wrote: Mike says we should
> > go to marrige guidance, but I know what the problem is - I'm not well and
> > I've got too many worries and too little support, but that doesn't seem to
> > count.
At least your husband is showing a willingness to want to sort
things out even if it is on his terms or around his expectations. As
long as you get a good councilor then maybe it could be a good way of
attempting to face up to some of the issues as well as talking about
your bottled up feelings - that might be a relief in itself. Until
everything is out in the open then it is unlikely that circumstances
will improve radically and a neutral forum may be the best enviroment
for you.
When we are feeling so bad it is easy to think badly of anyone
who doesn't seem to understand. Understanding can be difficult,
especially when a partner has extra responsibilities and may not feel
that they can rely on *you* for strength. They may feel that everything
is on their shoulders. They may not feel able to talk about this with
you or with anyone else and then turn their frustration on you by not
accepting the full extent of your problems/needs. I think what I am
actually trying to say is that your husband may, underneath the surface,
want to understand more than he is is able to do at present. Also, even
though he is not experiencing your illness (or Davids + Joanna's)
directly it has it's own set of consequences on him that he has to
*learn* to deal with both practically and emotionally.
Even though I am ill myself I don't always cope well with
Carole's illness, or certain symptoms, for a variety of reasons. Another
thing to remember is that your husband will never know what you are
going through unless he became ill himself. It sounds strange but if you
got 100% better then you would probably forget a lot of how you are
feeling now. If he then got ill, you would probably still have many
problems dealing with him.
Carole has just started reading 'M.E.' by Dr. Anne Macintyre. I
haven't read it but Janie recommends it on her site. I would suggest
having a word with her as to whether she thinks it is a good book for a
non-PWME to read and if so, asking your husband to read it. If he did
this he would be showing a willness to understand and he might gain more
insight.
Hope you things start sorting themselves out soon,
Vernon.
cary charles
Daniel John <danie...@bigfoot.com> wrote in message
news:370ce...@newsread3.dircon.co.uk...
>
snip
> I am very sick at the moment, and my parent have noticed! I have oral
thrush
> and it is very nasty. Sadly it is not going away with normal treatments,
and
> the Dr is being called to my house tomorrow!
>
> I feel like a giant mushroom *LOL
Sorry you are feeling so bad Daniel. Hope the doc helps!
At least you can order a pizza with that mushroom :o)
BFN,
Cary ;o)
cary charles
snip
Its not going to be easy, but I don't want to rush in to
> counselling. We're superficially fine, but both unhappy below the surface.
You know, this sounds like you think counselling is a big deep pit you can
never climb out of. All it is is sitting down with someone who will help you
talk things through. Many ok relationships become great as a result.
Besides, counselling is all about that bit 'below the surface'. The
wonderful thing though, is that a good counseller will help balance you
both, while you express what you really need to say.
>
> I'll let you all know if we have any major breakthroughs, but I'd like to
> leave it now, if you all don't mind? I've got loads of posts to answer,
and
> I feel really tired. I'm not as down about it all now, though - which is
> nice! :o)
No need for you to answer this Jackie, or my latest email. I understand
totally.
BFN,
Cary ;o)
cary charles
>
> p.s. Nobody's ever called me cherub before! :o)
>
>
Well, you know, I use that name every now and then. I was once called it by
a lady who saved my life - literally - and found it very nurturing for some
reason. It is a word so rich with imagery, all warm and golden, or fresh
faced and cuddly. To me it is special, and every now and then, particularly
when I want to nurture someone, I pass it on ;o)
I guess it is part of my subconscious saying I want to give you some of what
she gave me - unconditional love.
BFN,
Cary ;o)
cary charles
>
> BTW, Cary, I bought my first bottle of Kava Kava today. Me, influenced?
> :o]
Influenced? No, surely not!
Under the influence? Well, you will be ;o)
Seriously, don't know what you got it for, but hope it helps! I am kind of
sure it will - if you get the dosage right ;o)
BFN,
Cary ;o)
Jackie Fill
Vernon Webster wrote in message
<1dpyqds.177...@the-spa.demon.co.uk>...
>maybe it could be a good way of
>attempting to face up to some of the issues as well as talking about
>your bottled up feelings - that might be a relief in itself. Until
>everything is out in the open then it is unlikely that circumstances
>will improve radically and a neutral forum may be the best enviroment
>for you.
Even after two chats I feel there is still a lot that hasn't been said, and
I don't feel that we've particularly resolved anything. I still feel
disgruntled! I've been wondering whether to write everything down that I
think and feel in the form of a letter, let him read it and ask him to reply
in writing too.
> When we are feeling so bad it is easy to think badly of anyone
>who doesn't seem to understand. Understanding can be difficult,
>especially when a partner has extra responsibilities and may not feel
>that they can rely on *you* for strength. They may feel that everything
>is on their shoulders.
I rhave come to realise that I have just been looking at everything from
*my* point of view. This illness has affected his life too over the last 8
years. I've been so wrapped up in myself and the children that I think I
have pushed him out, especially in the last 6 momths. It doesn't change the
fact that he has been unsupportive, but it has opened my eyes to the fact
that I am not totally blameless in all this, and both of us can see that
things have to change.
> I think what I am
>actually trying to say is that your husband may, underneath the surface,
>want to understand more than he is is able to do at present.
I don't think so, Vernon. Whenever I go into details of any of our ails he
clams up. I left the Jill Moss book out when I borrowed it from Deborah, and
he read a page or two, then stopped. He says why talk about it when there's
nothing he can do? I can understand this to a point : when David keeps on
and on throughout the day telling me he doesn't feel well, I used to get
ratty with him becasue I could do nothing to make him feel better. Now I
have realised that he just wants reassurance, so I just say 'I know, dear.
Perhaps you'll feel better tomorrow' or some-such, or give him a little
cuddle and he's happy again for a while. If I could just get a reaction like
this from him it would be something, but he either ignores me or grunts! :o)
> Even though I am ill myself I don't always cope well with
>Carole's illness, or certain symptoms, for a variety of reasons. Another
>thing to remember is that your husband will never know what you are
>going through unless he became ill himself. It sounds strange but if you
>got 100% better then you would probably forget a lot of how you are
>feeling now. If he then got ill, you would probably still have many
>problems dealing with him.
Yes, I agree with that 100%.
>
> Carole has just started reading 'M.E.' by Dr. Anne Macintyre. I
>haven't read it but Janie recommends it on her site. I would suggest
>having a word with her as to whether she thinks it is a good book for a
>non-PWME to read and if so, asking your husband to read it. If he did
>this he would be showing a willness to understand and he might gain more
>insight.
Well, Janie - would it be a good book for a person to read who hates
reading, and especially hates reading anything medical? Is there a 2-page
pamphlet version?! :op
Thanks for replying,
Jackie :o)
Jackie Fill
cary charles wrote in message <7eksr5$8b6$1...@news7.svr.pol.co.uk>...
> To me it is special, and every now and then, particularly
>when I want to nurture someone, I pass it on ;o)
>
>I guess it is part of my subconscious saying I want to give you some of
what
>she gave me - unconditional love.
Thank you Cary. Well, I do actually look quite cherubic, don't I? :o)
Jackie
cary charles
BNF,
Cary
cary charles
snip
> Well, Janie - would it be a good book for a person to read who hates
> reading, and especially hates reading anything medical? Is there a 2-page
> pamphlet version?! :op
>
> Thanks for replying,
> Jackie :o)
>
Well, how about one of our websites?
bFN,
Cary ;o)
>
Janie Thomson
Re: Anne McIntyre book:
> Well, Janie - would it be a good book for a person to read who hates
> reading, and especially hates reading anything medical? Is there a 2-page
> pamphlet version?! :op
Frankly, no. Most of the ME books are heavy on the medical detail and
benefits etc. and light on the coping with illness and relationships aspect.
There is a new book out by Janet Hurrell called "A Helping Hand Through ME",
which I purchased a couple of days ago. I haven't finished reading but it
seems much lighter in tone. Again there is not much on the emotional
support aspect.
One which is heavy on how it feels to have ME is "Knowing ME" edited by
Caeia March. I'm not sure Mike would get anything out of that as it is
written from a very female perspective. I picked it up in Waterstone's to
have a bit of a flick through while waiting for my Dad one day. I totally
embarrassed myself by bursting into tears at the sudden wave of recognition.
Bits of it are dire, but other bits are amazingly good. The cartoons are a
hoot.
I will be putting a link to both books up on my ME pages in the next couple
of days, so if anyone's interested they can get them from Amazon at 20% off
(and earn me some commission! - got to pay for this OU course somehow!) by
clicking the links. No pressure - you may also be able to get them through
your local library.
I don't think Mike will be interested in either of these books though,
Jackie. Perhaps you could find him something more general on coping with
illness. Amazon have a whole section on that, but I haven't read any, so
can't recommend.
I'm glad you don't seem quite as desperate as when you originally posted on
the subject. I do think that some sort of counselling might help, specially
as Mike seems up for it. You already seem to be seeing things a little from
his point of view. Perhaps having someone who can hear you both in an
impartial way will let you both see things from the other side.
To an extent Mike will be mourning the loss of his wife, and yet you're
still there with him. You have to renegotiate your relationship and give
each other the chance to get to know the new people you have become. It
sounds like Mike just isn't a talker. Was he always like this? Maybe he
needs the "safe" environment of having an impartial person involved. Am I
right in thinking he was the one who brought up the subject of counselling?
Don't reply to this if it's all getting a bit much. I know you deleted your
original post, having thought better of it.
The offer I made via e-mail still stands.
All the best
--
Janie
e-mail Ja...@wyndford.freeserve.co.uk
ME pages http://www.tigercub.freeuk.com
homepages http://www.wyndford.freeserve.co.uk
cary charles
Janie Thomson <Ja...@wyndford.freeserve.co.uk> wrote in message
news:7eo23g$apo$3...@news8.svr.pol.co.uk...
> Don't reply to this if it's all getting a bit much. I know you deleted
your
> original post, having thought better of it.
Oh jeepers! I did not realise that. Messages are doing strange things for me
at the moment. I would have shown a lot more sensitivity. Sorry Jackie.
BFN,
cary ;o)
Jackie Fill
cary charles wrote in message <7eon9f$qn9$1...@news5.svr.pol.co.uk>...
>Oh jeepers! I did not realise that. Messages are doing strange things for
me
>at the moment. I would have shown a lot more sensitivity. Sorry Jackie.
That's all right Cary :o) I was very upset when I wrote it, and I just felt
I needed to talk to someone. As soon as it had been sent I started to worry
: a) do I *really* want the whole world and his cat (and his bar of
chocolate and his funny slippers) to know all this and b) do they care?
I remembered that Dan said recently that you can delete your own ng messages
so I thought I'd do that - it was only 4 in the morning, it would be gone by
the time you all got up, but it didn't delete for *hours*, so there you are!
I'm still not sure about a) but I certainly found out the answer to b) :o)
and I tell you, all your replies have helped me so much to think it all
through, to understand some things I didn't, and to realise some things I
hadn't. Free counselling, really! (Or are your bills going to arrive in the
next post? :o) I can only pay in chocolate buttons, if that's alright?)
For the record, I now feel that we *have* resolved some issues and am a lot
happier. Also, although I was complaining about his lack of
communication/understanding I realised that I hadn't been doing an awful lot
of it either!
Hope you've used me as an example, and all been extra nice to your loved
ones this week?!!!!
love, Jackie x
Heather Knowles
>Free counselling, really! (Or are your bills going to arrive in the
>next post? :o) I can only pay in chocolate buttons, if that's alright?)
Fine by me. :)
*slurp*
--
lotsa luv, Heather xxxxxxx
Vernon Webster
> I remembered that Dan said recently that you can delete
>your own ng messages so I thought I'd do that - it was only 4 in the
> morning, it would be gone by
> the time you all got up, but it didn't delete for *hours*, so there you are!
Do you think that it is the less obvious things like this that
differentiate pay for internet service providers from the free ones
(accepting that the pay ones have problems and inefficiencies from time
to time) and that many the 'faults' don't usually matter to the private
user.
Vernon
Vernon Webster
> For the record, I now feel that we *have* resolved some issues and am a lot
> happier.
I'm so pleased that you are feeling a little better about
things, I hope the worries of the past few days lead on to things being
better in the future. I was taught that the word crisis didn't mean 'bad
situation' but 'turning point' which can be for the better.
Vernon.
cary charles
snipped
>I can only pay in chocolate buttons, if that's alright?)
I don't know why, Jackie, but this line calls out to me - makes me very
happy :o)
I expect an emailed scan of a packet shortly ;o)
(now that would be mental torture!)
>
> For the record, I now feel that we *have* resolved some issues and am a
lot
> happier. Also, although I was complaining about his lack of
> communication/understanding I realised that I hadn't been doing an awful
lot
> of it either
Good to hear. These things can build up, and I think this illness can tend
to make us go inside ourselves more sometimes as we are just so knocked at
times - very understandable in your case, looking after two kids is
unimaginable to me, let alone ones with the DD! So, big pat on back. (no,
not a cowpat!)
BFN,
Cary ;o)
Vernon Webster
> These things can build up, and I think this illness can tend
> to make us go inside ourselves more sometimes as we are just so knocked at
> times
That's why we need at least one curry a week to get things
shifted :-)
Vernon
Vernon Webster
original of two messages I got a warning, although I did not pick up the
messages myself.
cary charles
Vernon Webster <ver...@the-spa.demon.co.uk> wrote in message
news:1dq3if5.w3g...@the-spa.demon.co.uk...
> Jackie Fill <jac...@the-barns.freeserve.co.uk> wrote:
> > For the record, I now feel that we *have* resolved some issues and am a
lot
> > happier.
>
> things, I hope the worries of the past few days lead on to things being
> better in the future. I was taught that the word crisis didn't mean 'bad
> situation' but 'turning point' which can be for the better.
>
> Vernon.
Aha! We are young grasshoppers . . . . but we will learn ;o)
Very good point, Vernon!
Huge overenthusiastic pat on back, causing you to back away slightly,
disoriented by the intensity of the response :o)
BFN,
Cary ;o)
Vernon Webster
> Aha! We are young grasshoppers . . . . but we will learn ;o)
So you haven't seen 'Bug's' yet ;-) - the grasshopper's were the
baddies.
Vernon.
cary charles
No but I would like to . . . . . I was thinking more along the lines of the
malteser ad imitating the old Kung Fu series. Always cracks me up.
BFN,
Cary ;o)
Janie Thomson
cary charles <ca...@charlesc.spamless.freeserve.co.uk> wrote in message
news:7f006b$fiu$7...@news8.svr.pol.co.uk...
>
>. . I was thinking more along the lines of the
> malteser ad imitating the old Kung Fu series. Always cracks me up.
I've only seen that ad once, but it made me spit my coffee across the room.
The cat sulked for ages as she had to put on an unwarranted turn of speed to
avoid getting sprayed. She glared at me from the other side of the room,
which was almost as funny as the ad.
Vernon Webster
> No but I would like to . . . . . I was thinking more along the lines of the
> malteser ad imitating the old Kung Fu series. Always cracks me up.
Can't recall the malteser ad but I do remember the Kung Fu
series. BTW though 'Bugs' is entertaining enough 'Antz' has a little
more in it for us oldies - especially for movie buffs. The voice of the
main character is done by Woody Allen and starts off with him having
psychotherapy. Other stars include Gene Hackmann, Sharon Stone and
Sylvester Stallone.
Vernon.
katya robin
Vernon Webster
>'Bugs' is entertaining enough 'Antz' has a little
>more in it for us oldies - especially for movie buffs. The voice of the
>main character is done by Woody Allen and starts off with him having
>psychotherapy. Other stars include Gene Hackmann, Sharon Stone and
>Sylvester Stallone.
antz out on video soon for those of us who missed it at the cinema
i'm planning to buy it
cary charles
>
> cary charles <ca...@charlesc.spamless.freeserve.co.uk> wrote in message
> news:7f006b$fiu$7...@news8.svr.pol.co.uk...
> >
> > malteser ad imitating the old Kung Fu series. Always cracks me up.
>
room.
> The cat sulked for ages as she had to put on an unwarranted turn of speed
to
> avoid getting sprayed. She glared at me from the other side of the room,
> which was almost as funny as the ad.
>
SO different when the tables turn :o)
BFN,
Cary ;o)
cary charles
> cary charles <ca...@charlesc.spamless.freeserve.co.uk> wrote:
> > No but I would like to . . . . . I was thinking more along the lines of
the
> > malteser ad imitating the old Kung Fu series. Always cracks me up.
>
> more in it for us oldies - especially for movie buffs. The voice of the
> main character is done by Woody Allen and starts off with him having
> psychotherapy. Other stars include Gene Hackmann, Sharon Stone and
> Sylvester Stallone.
>
Now that sounds fun . . .now I wanna see both ;o)
bFn,
cary :o)