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Post by bam02 on Aug 19, 2005 10:44:12 GMT
Well I am going to try this ,but not sure how it will work.
I am trying to carry on after one year medical reitirement and prior to that one year off sick. The retirement was a combination of mental health and chronic sickness due to my blood disorder and associated lung damage. So although I got my superannuation and half a full pension. It wasn't toatly for depression/anxiety although it played a part. I say this because I don't want anyone to think that medical retirement is a possiblity for everyone. Unfortunately for mental health issues the doctor I saw said no way would it have been granted at my age 38/39 at the time for that alone and they say with treatment I could have got better. Not so with my blood it can only be maintained and managed .
I think its wrong to think that about mental illness because some can go on for years and by that time you probably would be out of work and have no pension.Ofcoursse this could be different for different schemes. I was the youngest person he had retired. But my blood condition is rare and I had struggled to change work for years - reducing hours etc. to manage it.
I must go now. I will try again later this is harder than I thought.
Anne-marie
Must go now will try this again.
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Post by cheshire on Aug 19, 2005 14:38:29 GMT
Anne Marie
Your situation sounds pretty rare, you've got lots to juggle. But I presume you do get some pension now (?) which is good.
Hopefulx
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Post by cheshire on Aug 22, 2005 13:41:37 GMT
Anne Marie
How are you?
Are you ok?
Hopefulx
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Post by bam02 on Aug 27, 2005 11:21:53 GMT
Dear Hopeful,
I have been away to Edinburgh Film Festival and saw Serenity a new film to go on release in October. All the cast were there! But it was exhausting traveling to my sisters in Derby shire to drop off kids and onto Berwick on Tweed to the B&B then onto the film.
But nice to be with hubby alone even if a little difficult.
I do have a pension now and incapacity benefits so I am doing OK. The pension is for life the Incapacity benefit get reviewed but not till 2007 I think.
I am finding I am panicy in the mornings I feel it now even after a good sleep. Maybe due to the weird dreams I get - I rarely avoid realistic dreams . Not nightmares but sometimes disturbing. Often being unable to move. I might put this on the amin board as I feel it could be relevant to others.
Panic rises and gives me a low level headache! As time goes on it disolves and I find things easier - but morings are bad. I am on Cipralex that supposed to help anxiety and it has a little and I can cope after many months on it. But somethings not right.
I wish I could expalint omy doctor - but I always feel like I am moaning.
Oh well back another day.
Love
Me
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Post by Veritee on Aug 27, 2005 12:58:26 GMT
Hi Anne Marie
great to have you back - but I do hope you enjoyed the festival.
I may have said this before but we are in similar positions - I am an older mum ie late 30s when I had Caja , physically as I am also disabled - for a different reason as mine id due to an accident - and financially as I am on incapacity and I have DLA, no pension though I did get a pay out when I left for medical reasons - but had not paid enough despite working there 14 years, to get a pension
- do you have DLA, you could probably get it at some level from what you describe of your physical problems - have you tried?
What is your blood condition - you have probably said before but my memory is terrible?
Anyway the panics are difficult aren't they- I do not really get them now ( very occasionally when under pressure not to let someone down when out I have the occasional panic that I will not make it on time or will let them down , but mostly not any more - but I did suffer panics for years and they are horrible)
I found it useful to write down exactly what went through my mind when I was panicking, what ultimately I was afraid of happening.
Of course I understand you may not want to do this publicly, there was not Internet when I was going through this so I did it in a written diary.
But quite often when you analyze what you are panicking about - for most people it comes down to one key thing you are scared of, whatever the cause and the thing you are panicking about - and for many this key thing underling all your panics is something you find embarrassing to talk about or to tell others.
I am embarrassed still by my main fear, but I will say it here .
I was ultimately panicking about being sick, vomiting, especially in public..
I know to the outside this will seem daft but most people's panics usually have at their root a fear of some physical thing or situation.
For some it is a heat attack, sexual abuse is another - I will not go on but vomiting is very common.
Whatever I was panicking about - not being able to sleep, letting people down , not being able to look after my daughter
it would have at its base my fear of vomiting in public - that this would be likely and I would be unable to fulfill my commitments because I was sacred of this happening.
There were other panics I had - such as fear I would accidental or deliberately damage my child or that I would go mad and lose it altogether - but the worse was my underling fear.
I therefor found that it worked to identify this fear and admit is - at least to myself if not to anyone else - and sort of let this fear roll over me.
I also got specific counseling for this fear which helped.
As to explaining to your doctor
why not write it on here and then print this out and give it to him
Many have done this- it could work
All the best
Veritee
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Post by cheshire on Aug 27, 2005 21:11:23 GMT
Hi Anne Marie,
Lovely to hear from you. Glad you have had a break - strange though sometimes being alone with hubby. We just end up talking about the kids usually. Bit hopeless really - yet to have night away but hopefully as I'm getting better, I'll be up for it soon.
Hey, what you said about vivid dreams and panic is me at the moment. I don't sleep well so this might be part of it and mornings are HARD. The nightmares are VIVID and sometimes when I wake up I can't remember if they are reality or not for a few moments. I am good when I do get up - often think of you signature ''sieze the day or stay in your pajamas'' -so true, but sometimes so hard!
Keep in touch, Hopefulx
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Post by bam02 on Aug 29, 2005 12:18:13 GMT
Hi ya Verity and all,
I have an immune deficiency which I was probably born with but it manifested at about 5 years old and I coughed for several years most of the time until 18 when the blood treatment improved. Now its usually during and after a chest infection.
It is a rare deficiency where antibodies stop being made so your immune system never learns to cope. It is known as primary immune deficiency or hypogammaglobinanemia. When you have chemo therapy or HIV?aids they are known as secondary immune deficiency i.e result of treatment or virus.
In the past as i was diagnosed in the 70's as a child and grew up in the 80's as a teenager when Aids was new it was hard to tell people as they got scared - but its easier now. The boy in the bubble syndrome or SCID is part of the same family of conditions and the society I am involved with is apart of the Genes for Genes day every year.
I have pooled blood plasma given to me by pump in my stomach once a week at home and physiotherapy for my lung damage.Rather like Cystic fibrosis sufferers. i also need constant antibiotics - buts its not as bad as it sounds.
I do get DLA but just low rate care about £15 a week.
Any way thats me. But believe me I was OK about all this. I have had bouts of depression in the past - but this time has been since I got pregnant with Sarah nearly 4 years ago now and its definitely heightened problems since the birth - causing me to retire. I was lucky to retire with a pension I know- I had 14 years (some part-time but it was enhanced to 20 years due to ill-health and it was a superannuation salary scheme with the council. A lot of people especially the people I worked with can't believe i got it (half full pension) (full would be 40 years). Some don't think I deserved and just played the system! But I really wanted to work and get upset now to think that part of my life is over -in that job any way at 40 years old!
Any gone on enough with explanation. I wanted to say all this before but thought it better for you get to know you and you me. This can change things - but I know PNI is still an issue.
Thanks for listening
Anne-Marie
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Post by bam02 on Aug 29, 2005 14:52:29 GMT
:-/Now my panic has got into my dreams!I was dreaming about school from over 25 years ago! It was if I revisiting any areas that might have upset me then. But it was so real and I woke up certain I still had work to o for exams. There always feels unfinished business in my dreams.
it sounds so stupid. But The panic is real and Geoff said i spent too long in bed! No sympathy there. Now its aftternoon and the panci is still there always just around the corner. Never going away - I am chasing it all the time to find out why its happening.
I will write more if I get any insight because I can't carrying on like this.
Anne-Marie
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Post by cheshire on Aug 29, 2005 17:56:09 GMT
Hi Anne-marie
Hope you're ok - thinking of you. Sorry you feel bad at the moment. I used to be like this (panic around every corner) and still can be on bad days. I gave up analysing what was causing them in the end (because I was told I was doing this too much) and just assumed that perhaps it was just how it was going to be for a while and to expect that whatever the trigger was, PNI would just exaggerate the response. ie. something which would normally worry me would become extreme fear and panic.This was what my therapist advised for me and it did help me, but I'm sure it wouldn't work for everyone and has only really helped since I started my recovery.
Hope you can make some sense of this - most of my physical symptoms have died down but I've still got a scrambled brain. Concentration is shocking. Hopefulxx
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Post by cheshire on Aug 29, 2005 22:36:05 GMT
Hi Anne Marie
I meant to respond to your previous posting about your hypogammaglobinanemia (wow, that is hard to remember and must be even harder to spell). You really are amazing with all you have to deal with even though I know to you it's probably like second nature most of the time.
When you said ''This can change things - but I know PNI is still an issue'' I wasn't sure what you meant?
I don't know much about this condition (which is why I'm finding this posting hard to write) so I don't know what to say except that you're right, it is good for us all to get to know a bit about each other - it's easier to respond and support then isn't it?
Take care, Hopefulx
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Post by Veritee on Aug 30, 2005 10:44:33 GMT
Hi Anne Marie
I too think you are amazing to cope as you do with such a truly debilitating condition.
I was curious why you thought if you told us about this ( the details of your disability) why you thought it might chance the way we see you?
Is this related to the fact that this is an immunity related condition and that we might misunderstand that it is not HIV AIDs related?
I just want to reassure you that even if someone had HIV or full blown AIDs that they would be totally welcome on here - and that as I used to ruin HIV AIDs residential workshops for young people including gay and lesbian young people - I for one do understand totally the difference between your ( probably ) hereditary condition and one caused by a virus .
But it really would not matter hear what it was caused by anyway. Perhaps I am barking up the wrong tree as to why you did not want to tell us before ?
But whatever reason it really does not change anything for us - you are welcome totally here.
I a,so have a disability and we have had others who had PNI but also a disability of some sort as well as PNI. Anyway - just wanted to say how brave you are.
I also relate to the work thing - I really can not work at the moment although I am on the waiting list for an operation that I am hoping so much will change it for me and I can work again.
and I understand that with your disability you may not be able to and how this leaves you with no structure in you life and various other concerns
Anyway it is lovely to have you on here
All the best
veritee
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Post by bam02 on Aug 30, 2005 11:20:34 GMT
Hiya Girls,
Some of what you all say is true. But my main concern was that you might think (like most of the health workers I see) that what I feel is due to the illness and not the PNI. So maybe you might think I didn't understand the rest of you.
I suppose that is shortsighted of me as I realise you are all so understanding and some have other issues too. You may all understand better than any of the therapy I have had.
I have been in the past scared of being thought of having AIDs but that was in the time when it was all in the papers in the 1980's and early 90's and frightening everyone. I am now ashamed to have felt like that as we all understand the transmission of HIV better and feel so much for those people as the virus keeps going to hurt the immune system - mine doesn't get any worse.
I hope I am more of an ambassador for those with Aids - as I have had to explain it so often.
Verity I hope to do a volunteer course with MIND soon , childcare permitting and hopefully help others more as I already have a counselling certificate. But didn't carry on for the diploma. wasn't ready then.
Hope this explains things.
Anne-Marie
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Post by Veritee on Aug 30, 2005 14:40:41 GMT
Yes I understand that. Very well.
I always worry too that I will be considered by others on here that I did not suffer PNI but my symptoms after Caja's birth were caused by something else...
This is because over 20 years before PNI -
when I was about 16 and I did not suffer PNI until I was nearly 40 -
I was admitted into a psychiatric unit -
I will not go into it now but the reasons were very, very different from PNI .
I do not make a secret of it on here but I only mention it when I feel it is relevant
I think because like you I am worried that it might be thought that my PNI illness was caused by a pre-existing illness.
I know this not to be the case, and I believe that I never suffered a mental illness anyway but what happened to me as a very young girl was a mistake that should never have happened .
And if anyone is interested to know what it was about I am happy to explain in an email
And of course on here we accept that some have other issues as well as PNI - but we all share PNI.
And even if what happened to me was warranted - I certainly never had any further mental health issues until for over 20 years until the day after Caja was born!
But I do see why you did not explain.
And good luck with your diploma - I did not get more than an initial certificate either which I did along with my Youth and community qualification..
I too have often thought of doing the diploma although I do not think this is likely now
But good luck to you if you apply this September
All the best
Veritee
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Post by cheshire on Aug 30, 2005 15:05:46 GMT
Dear Anne Marie,
I can relate to what you say about PNI and other issues complicating things. It has been a little bit like that for me too. I think most of the professionals I've worked with have seen a real escalation of anxiety and depression over the last 12 months ( I would say to a level that felt out of my control which is why I think hormones play a part..). Anyway, there are 2 other things / issues which they say makes it a bit of a complex web ..(I think I etailed on another thread somewhere). ...lots of things happening within weeks of each other - bit difficult to disentangle..but some form of PNI as a result. I'm sure everyone's PNI experience must be slightly different - but we all seem to have some common symptoms and for me, that it what I find helpful about this forum if you know what I mean.
Anyway, glad to be getting to know you. Blimey, there are a few with counselling experience on here at the moment?! That was where I started but I'm now in education with young people (counselling skills crucial!!!).
Take care Hopefulx
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Post by bam02 on Aug 30, 2005 16:17:08 GMT
Hiya both and any body else brave enough to listen here,
I am not doing the diploma yet just a Mind 10 week volunteer course, but who knows if someone is prepared to pay for it I might go on!
Thanks for the messages and understanding.
Veritee,
Please do explain by e-mail if you want about you as a young girl. My experince in hospital as child being investigated for my health condition was so different from anything children have now thank goodness and I am a few years younger than you. I expect but don't know that you were affected by the era you were young.
bye for now.
Such support is great on here
Anne-Marie
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