Yurts & Yurting again today

Yet another really busy day!


My sister arrived last night for a visit, as did new guests for the Yurt, we have new guests arriving today for the flat and today we have to put up the other Yurt to act as a marquee for my daughters friends wedding/hand fasting : http://en.wikipedia.org/wiki/Handfasting

I am now wondering if we did the right thing in embarking on this Yurt letting business in addition to letting out our flat?


As neither of us feel that well and we constantly have so much to do. When I first suggested it I felt that it would be a positive thing to do to run a small holiday letting business from our smallholding because as well as the extra income to supplement Barry's pension both of us are people who like to work and have a purpose, especially Barry and the holiday lettings are really his job not mine and we felt that to have this would extend our lives and well being.

But neither of us feel well enough to work outside the home for especially for an employer who might not understand when we have days we just can not function! To have a job and then let some one down some days would put us under more stress that we just do not need.

My difficulties are more due to mental/emotional health which is struggling as I still have not come to terms with what having HIV means for us and the rest of our lives, and I worry constantly about the possibility of Barry getting really ill again or even dying and leaving me on my own -

Despite all I love him so much and have for the last 30 years that he will die before me and horribly of AIDs, this is my biggest fear and dread!!

I also struggle due to my existing disability caused by my horse riding accident - some days I walk fine but I still have some really bad days especially in the winter. So for me it is others things than having HIV that make me not feel able to work outside things I can do on my smallholding. As I am physically healthier now than I was before I realized I had HIV and started the HIV antiretrovirals. Although having HIV does affect me too as I have med side effects the worse being constant diarrhea and nausea, dizzy spells and tiredness. And I now have problems with high blood pressure and high cholesterol for which I am having tests to see what can be done and what medication I need ( this is possibly due to the HIV meds, but what choice do I have it is take HIV meds or die of AIDs.

Some people I talk to seem to thing that this is not so, that some how people with HIV just do not die of AIDs now- btu the facts are - IF YOU DO NOT TAKE HIV MEDICATION EVENTUALLY ALL WITH HIV WILL STILL EVENTUALLY DIE OF AIDS!!

It is only the new very effective meds that mean we live longer and even then it is not guaranteed!

.............and I am not looking forward to going on any more medication - I hate even taking the HIV meds!!

However I did not have AIDS like Barry nor was I ever as ill as him - yet!- and I have less side effects than him to the drugs.

He gets terrible rashes, weakness, severe fatigue which means he often has to sleep in the day and goes to bed at around 8pm and his weight is so low now his tiny jeans, size 28, fall off him ) sometimes wish HIV made ME lose some weight!! I have put it on especially around my middle )

but he likes to have something to do

But I am beginning to wonder if it was a good idea and we should have just tried to relax and enjoy our lives without this pressure?

Because it has actually been one stressful thing after another.

First making the facilities like the toilet shower and the kitchen was a hard slog, mostly one that Barry did and took him all winter - and that was with him working everyday when he could.
Then the Yurt was not a simple to put up as we were told and we had severe probelms with water getting in which we have now solved, but it took us a while to work out how to solve them.

Since everything has been up we constantly have problems to deal with, Barry calls them teething problems but I am not so sure.

The gas boiler for the shower failed the morning some guests were due and we had to get a new one and Barry had to fit it in a couple of hours before the guests came, then the batteries for the toilets and 12 volt lighting were not holding their charge, not to mention high winds a couple of times nearly blew the yurt down!!!

As well as all this we have in the last month had car problems - still have Barry is trying to fix the car today - our fridge freezer broke a week pasts its warranty ended and we had to replace it, various other things have broken in the house and needed maintenance or repair. We still have 9 acers of land to maintain and have had to do fencing and cut back bracken and of course Barry has to cut the grass and maintain the outside areas for the lettings.

And of course as well as all this my older brother committed suicide!!

• So we are both feeling exhausted now and I am truly wondering if the Yurt was a good idea?

But it is too late for this year as we have bookings until September so we have to do it this year at least and we have promised to put the second Yurt up for this handfasting, so we had better get on with it!!

There is no smoke without fire - or is there?

Why is it that since I have had HIV I am not believed that I have been totally sexually faithful to my husband of over 25 years, am not a drug user - well did a few things when a young woman but not anything for over 30 years - and have never taken any other risks for HIV etc?

Yet before I found I had HIV no one had any difficulty accepting that while it is not that common theses days I have NEVER been unfaithful to my husband. So many said I was so lucky to have a relationship whereby I was never tempted ( they were wrong I was certainly tempted but just never did it!! I always just said no!)

But since I have found I have HIV I am so often asked 'are you sure'?

Even - and often - by others who have HIV!!!!!!!!

Of course I'm sure!!
HIV does not change the facts of my life - and does it matter - except to me, that I was faithful ??

It is not that I feel that I am somehow different from any others who have HIV.

I truly believe that HIV is not a matter for blame or fault - it is just a virus.

• But I just wonder why before I found I had HIV no one questioned my truthfulness in that I said I have never had sex with anyone but my husband for 25 years +
  
• it was not a matter of pride or morality - Just a FACT!!

Having HIV does not alter that and I just want to be believed when I say things that are true.

And I have always been a totally truthful person. I have other faults but not telling the truth is not one of them.
So I can only assume that this lack of belief of my faithfulness to one person - yet I live with HIV .............

..............can only be put down to the blame culture around HIV? That somehow if you have HIV you are to blame in some way for having got HIV.

It does not matter how you got it - it is just a virus!!!

I do not believe in 'good AIDs/HIV & bad AIDS/HIV
If you have HIV you have a virus
That's all
And no virus has any questionable or otherwise human values.

And a virus in itself does not carry stigma.

Only humans do.

Are you Positive?

I do not know about you but I lead my life in a completely positive way

Even though I am HIV positive

Our local college - the one my own daughter attended and I taught as a lecturer until 2003
Is putting on a play about HIV

Great is all I can say.

If you live in Cornwall why not come to this?
http://culturaldiversityatcornwallcollege.blogspot.com/2008/10/are-you-positive-cultural-diversity-in.html

That others apart from us in Cornwall do have some awareness and care for us who are living with HIV and or AIDs is to me wonderful .

As for so many it is an issue that too often is thought that

• - is not my problem
  

But it is or if not it could be for your kids in the future!!

- as you know I have been quite ill and my husband has had AIDs but the latest HIV meds has dragged him back from this .

The message NEEDS to get out

HIV is not just an issue for those who live in other countries, like Africa etc nor is it only an issue for those who live in cities in the UK

HIV is here!!
It is here in Cornwall - and all parts of the UK

Many live with it even in beautiful and rural counties like Cornwall

But due to the huge stigma , so few in rural counties are open about living with HIV
I am open about having HIV and YES living in Cornwall I am sticking my neck out to be so openly living with HIV.

But I think what the heck??!! I have been through far worse already in my 56 years of life.

I have had a really difficult life up till I acquired HIV in my 50s - AND I AM NOT NOW GOING TO KEEP QUIET about this one

I am so glad john found his sister before he died

He always wanted a family that was his own - and not just us, his step siblings.
Please click on the image to read it properly!



I dare not even ask if Johns sister - who was adopted and who may even be my sister too, I will never know - knows about his death and that he killed himself.

My Tribute to an Inventor of the PC - John Reed

My brother John was part of the IBM team that invented this piece of Technology you are reading this blog through - what an achievement - so few can match this?

No one really can know why John - my brother - committed suicide today I guess

- but having grown up with him I think I actually may have some idea!
But worried to tell his family -

But probably I am wrong as no one really knows but him.

But I do not know if anyone who was not there could understand what we went through as children .
And it does not matter - what matters is his relationship with them.
His note apparently was brief, part of it was

'I love you all '


And that he loved them is all that matters in the end
_________________________

If anyone has the time to look at the videos on his site before they go down .

As he is not here now to service his site - in his memory I will see if I can keep it on

http://www.reedfamilyalbums.co.uk/


There are pictures and videos - Videos here:
This is a happy one of him jetskying : http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

- that site says it all really about his life from the 70s onwards.

Despite the traumatic childhood both he and I to a degree, went though, he led a full life and very useful and productive life . But I think I do have a good understanding of why he might have ended it now.

I was very angry at first - but not now.

Computer Science Degree - Cambridge 1960s

• 
  
  His life was full of achievements,
  Most I fear will never be recognised.
  
  He was one of the first modern computer scientists that EVER existed - he was a student at Cambridge on what I beleve to be the first computer science degrees ever in about 1964 - and was later one of the team at IBM that invented this 'personal computer' that we are now talking though.

He has also since done other academic courses . He was a VERY clever man. If he had cared to he could put at least 2 degrees, two PHDs and many other qualification after his name.

But my memories of him are disjointed and very much of the past.

As a young girl/youth I remember I was so impressed to find that at Cambridge his room mate was John Dunbar Marian Faithfull's first husband: http://en.wikipedia.org/wiki/John_Dunbar Dunbar was going out with her- MF - then and I met him but never met M Faithful, John my brother went to their wedding- I was very young then myself but I did grow up with him as my adored older brother and did visit him at Cambridge and remember his achievements and those he mixed with in those very interesting times .

International Times was an underground magazine of the time that he introduced to me at a 'too young age: http://en.wikipedia.org/wiki/International_Times

Reading this had a lot of influence for me and my life as such a young girl. Reading this as a woman taught me not to be a victim - so many young women of that time were victims an not proactive.

But so few remember how it was then i.e in the 50s and 60s

Basically it was hell to be young and especially female if you were alone who wanted more for themselves than was our class or destiny -

John broke the mold as his origins were as humble as mine ............he even spent some time in a Dr Bernardo's home as a young child - does anyone now remember what that was all about ? He must have gone through sheer hell!!!

Well I know he did

But we are the only ones I guess who remember - those who were there are he testimony to what we went through and so sadly he is now not now here.

But he was probably never recognized for the achievements he made and it was huge I would not be able to talk to you here on this PC if it was not for he likes of my brother .

That is huge!!!!!

Think of the significance the PC has on all your lives!!!

I will continue this when I can

Rest in Peace - My Brother, John Reed

I have not written on this for ages
As most of us with HIV say - '

'we just want to get on with our lives'

But today I learned my older brother killed himself??

Of course he did not have HIV - I am yet to hear if he had any other physical illness. I talked to only him last week on the phone. He did not mention anything then although I know he always worried about his health since having bad tosolitus and related infections severely as a child.

Apparently he left a note I have been told went something like this ..........


'I love you all'

I know he did - but my initial reaction was anger that he did this to his family

As once you kill yourself you are out of it - it is the rest of us that have to cope with what you did .

Given my own situation I can not say I have not considered it - but I will NEVER do this as it is NOT about me

It is about those you leave behind

But I know this is probably easy for me to say - I think of all of us John had it harder in many ways - and yet he achieved so much


Why you may ask does it happen to me and my family ? Well it just does!!

What follows are disjointed memories of my brother which I will edit at a later date when I have got over the shock
______________________
In his memory here is his web site where he stored our family pictures and videos of him and his children and their life: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/index.html

I am trying to download the videos as fast as I can as he is not now around to maintain it so I fear it will go down soon

Here is a video of my older brother with my dad in the 1970s: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

My dad was VERY small and my brother VERY tall.

Ironically John was always regarded as the OK one of the family!!!!

A very successful computer scientist, businessman and a 'man of means' in fact if you add together all the property he owned in Cornwall and Windsor and London, it must have amounted to a lot more than I realised , so to my mind he must have been failrly well off compared to me and most I know .

But obviously your financial situation this is not everything

And as far as I knew he had reasonably good physical health for someone in his 60s ( although I know we share a very traumatic childhood and that probably I know more than most why he did this very final act.

Whatever his life has been since I know his reasons are in the past
A past I partly shared

He has two birth children who each recently had children, his grandchildren and his foster daughter that he later adopted has children that he loved.

So this has been a complete and utter shock to us all.

My mum died today - Isle of White Pop Festivals - it might not have any connection for anyone else but goes together for me !!!!

My mum died today - yes she was over 80 but she never had a good life and faced so much - Yet she always did what she could for others

She was special but it took me years to realize this.

My mum - she was an absolutely lovely!! So accepting of others, which is a true gift.

A kind and totally wonderful woman - a nurse in WW2 ( hastily
Trained up for the war at a young age as many were then and a nurse then that saw many an awful thing and awful deaths)

...............and later a pre school/playgroup worker and a then a carer of disabled children and despite her own blindness she worked for the Red Cross in later years
until she could not anymore - due to her own difficulties -

She was a woman who always did her best for her children - 3 of us and one step brother who she did not have main care of but did her best as and when she could

and tried to care for everyone else when she could - she took on other children during her life .......... in the days when the social services just were happy if you could help - in often
very difficult and awful circumstances for her she did a great job.

When I was young theses other young people, They were often termed as 'lodgers' but believe me that were a lot more than this.

I remember one very funny time when I was about 15 - 1968/69 and sneaked off to the Isle of White 'Pop' ( The Bob Dylan one? http://www.ukrockfestivals.com/iow1969.html - http://www.britannica.com/EBchecked/topic/708455/The-Isle-of-Wight-Pop-Festival -

No maybe it was not that one as that was the year after in 1989 - I went to 3)

So this was the 1968 one I think? that one of our 'lodgers' followed me and my friend and hitched with us!! We did not ask her and she frightened us a little.

As she was just out of Park Prewitt - the local mental Hospital/asylum - little did I know I at that age would be sectioned there a couple of years later at 17 myself !!!!!! .........

And she had an addiction to what we used to call then - Mogadoni.e Nitrazepam

Which made you manic and totally 'out of control' for the first 30 mins to an hour of taking it - which you could extend if you drank alcohol -which she did - with it for a lot longer but then - eventually whatever you did - made you stupid and coma like.

So us ................ two naive 15 year old's spent the weekend at the Isle of White Festival trying desperately to control a 22 year old who was totally off her head on Mogadon and was alternatively manic or in a somnolent almost in a coma so we had to carry her!!!.

It rather upset our enjoyment of Bob Dylan and the other wonderful performers!!!

but we felt we had no alternative as we felt we had to keep this young woman 'safe' for my mums sake!!!! Because we all respected my mum and whatever we had to look after this young woman as she had followed us so it was our responsibility

My mum was just so accepting, perhaps maybe to accepting given that I was complete rebel in the 60s and 70s - But it was a trait that i did not appreciate or value then and probably because I have not been accepting like this with my own daughter is why my daughter and I sadly do not get on?

As I have 'strangely' tried to control my own daughter and she has resented it - yet I was brought up by a mum whose great assist was her acceptance of her own children and her ability to give love and guidance but understand we had to make our own life and mistakes from as young as we needed too.


My mum has been partially sighted all her life and mostly blind
since her late 40s............ really since I was in my teens, and has had many illnesses
and later Alzheimer's - she knew it was happening i.e Alzheimer's -
and was so very brave - so has suffered so much - so we are all glad
that it is now over and she is able to rest at last


All our mums are special, even if all they did was bring us into the
world, that is a feat in itself - well that's what I think now having
only done it once to full term pregnancy!!!

I for one did not appreciate how special my mum was until I had gone
through quite a few things myself and then understood how hard and
complicated her life was and how much she had done in her life and
for others.

So this is for all our mums - they are all so special and so are we
all as women and some/many of us as mothers too - all women are
special and so are all of us here too - Since I have had HIV I have learned again

And I have been humbled by what others have gone through, both mothers and daughters/sons.

Thank you so much for reading this

Veritee

HIV is very boring

Some people have asked me why I do not keep up this blog much theses days
Well the reality is that living with HIV is just so very boring!!

I don't mean I want to live my life in a state of anxiety and trauma whereby HIV is uppermost on my mind and I am constantly distressed about it

No .............what I mean is that now we have got used to the fact we are living with HIV, there is often nothing to write about as our HIV is just a fact of our life.

But it also carries for me has its own unique sense of boredom because in the past I have always been a believer that life always changes and that you never know what is going to happen and what your future will bring. And I have always been happy and excited to face whatever life has in store for me.

But the one thing in my life that will never change now and will always be constant, is living with HIV - and the prospect of that bores me stiff.

I do not know if anyone will understand what I mean by this or why it is this way for me, but it just is.

I had an idea that this is how I would feel once I got used to he fact of living with HIV, so this is one reason I have tried to get involved with the HIV issue as an activist and have joined groups, a charity and started a woman's group.

But it is hard to be an activist on your own, never meeting anyone else who feels the same face to face - and so rairly meeting anyone else with the remotest interest in HIV from any point of view!!


I had hoped that I could use my new status and knowledge about HIV to raise awareness and inform and threw myself into distributing the PozFem stuff and contacting those I new from my youth work days and offered my services everywhere I could think of as a public speaker on HIV.

But no one is remotely interested!!!

That is something I have learned - that unless you have HIV most have little or any interest in it, and those of us who do have it get bored with it being a constant in our lives.

And very few are at all interested in finding out .

I guess like I felt before HIV ...

Everyone thinks that HIV will NEVER affect them personally, it will never be directly a part of their lives. Some are sorry that others suffer it but it is of no real interest to them!

I have tried to get some enthusiasm to do something for World AIDs Day or to join in with someone who is doing something down here for Worlds AIDs Day

But have found no enthusiasm to do anything and the only thing that I know that has been organised in this part of Cornwall is a party run by

Healthy Gay Cornwall - a health promotion initiative

Saturday, November 29, 2008
Time:
8:00pm - 11:55pm
Location:
Bar Q-Dos, Truro
City/Town:
Truro

http://www.facebook.com/home.php#/event.php?eid=96408265330

This is great - that someone is doing something. And I am going to go if I can - But I am not gay or even male but I will go to support.

their statement on the facebook page says: HIV still disproportionately affects gay and bisexual men in the UK. It is estimated that across the UK, around 1 in 20 of gay/bisexual men are now HIV positive - a third of those don't even know they are infected.

And I am not even male !! I am a lo older that most will be and theses days i can' cope with crowds or crowded nightclubs - So how am I going to feel if I go? Will I stick out like a sore thumb? Probably!

I am not sure anyway I agree with the statement. It is probably true that there are more gay and bisexual men in the UK that are HIV positive than other groups ( but not totally sure about this now) and that like the rest of the population a third do not know they are infected - but I thought this applied to the whole population of the UK and not just gay and bi men!!- well know it does -

Also I thought that HIV new diagnosis/infection rates had stabilized or even dropped among gay men and he fastest rising group of new infections of HIV are women in the UK??

I am sure that this is right?
( if anyone knows what the statistics are let me know ?)

Anyway what i really want is a job in HIV in some way - but as far as I can see their is no chance down here in Cornwall unless I moved it would be impossible!

If anyone knows of any jobs in HIV or related work in Cornwall let me know!! I need something to keep me interested and motivated.

HIV meds or Not???

I was interested to read an article in this months Positive Nation Magazine about weather to take HIV antiretrovirals or to rely on 'Natropathic' treatments

• You can down load a copy of this magazine here: http://www.positivenation.co.uk/ or ask for a physical copy - every one who is HIV Poz can get a copy sent in the post every month.

I was interested because although I went on the meds and did not at the time dispute that I should, I have been in contact recently with several who do not take meds and do not want them despite for some, their CD4 levels going down below the level where it is recommended you start

And indeed some who have found that on 'Natropathic' treatments their CD4 levels have risen to a manageable level - but their virus load has not dropped as this seems only to happen with HIV antiretro's?

I think it is important for everyone with HIV to make their own decisions about meds and of course I do believe that your state of mind is so very important for your immune system so if you are not happy to go on meds you may not take them religiously as they have to be taken and also may be further stressed at the thought of havign to take them?

I have to say that I went on meds as by the time I was diagnosed my CD4s were already under the level that I should start.

And while I did not find it easy at first as I was scared of them - to be honest taking the meds I am on at the moment are now no problem at all ( mild digestive problems at times that means I sometimes need to be near a loo)but really nothing so bad I can not cope with easily - and I feel 100% better on them - I feel I have got my life back!!

I knew I was not well before I went on them but I did not realize how low I had become until I started he meds and started to feel so much better

And I know that this is not due to any placebo effect - I have faced many mental/emotional challenges in my life and am very self aware and I know that I feel better on the meds because I am better.

But who is to say alternative therapies do not work?

I have met some who are on them and are still alive and relatively well many years after HIV diagnosis who believe they do.

I am interested to know what others think?

Veritee

Forward Not Back - and Work and Yurts

Despite my recent posts, while I have been doing a lot of reminiscing recently - there is nothing like an incurable virus to make you review your life - I am not looking back at all but forward with hope into the future.


I no longer do paid work, nor do I feel that in present circumstances I could or do any employer justice and do a good job for them and if I work it is important that I provide value for money

But I left my main career youth work in before I had any health problems - well not any like HIV etc - having become stressed and disillusioned, not at all with the young people, but with the bureaucracy and the competitiveness of many others - adult line managers mostly- I worked with.

I have never done any job just for money nor just for the status or ambition. I have only worked when I believed in what I was doing and for the enjoyment of it.

You may say I was lucky as I must have had the means to do this i.e not work for money.

This is not so. I have not been financially privileged and have had to depend on what I could earn - until I was disabled by an accident i had never even claimed any benefits.

I have often been very poor in fact at times homeless, but to get up for work and do a job just for money and status never had any meaning or motivation for me. If I did paid work it HAD to be worth it for other reasons. If I work I always put 100 percent into it and to do this it has to be worth while.

Perhaps this is due to what I have experienced in life i.e deep Sleep treatment as below and other abuse and dire life situations. Despite this attitude to work I have in fact found much work that was for me worth doing and until recently worked most of my adult life since 15 - I was for example employed by Cornwall County Council as a youth worker for 14 years and in London for many years before.


But I began to feel stressed, unwell, had my mother in law to look after and my child did not like me doing the hours I did and also found I was disillusioned with the politics of paid youth work –

At that time I was fascinated by computing the internet as a new means of communication. I had started a support web site for those with Post natal Illness http;//www.pni.org.uk a few years before and started to think that the internet was where it would be in terms of social and supportive communication in the future.

I still think it is in that it is a fantastic communication tool but no longer have the energy or means to be involved in its development

So I retrained by doing an HND in multimedia and web design and lectured for a while at a local further Ed college

But then I had a bad accident on my horse – I own a smallholding and bred horses – and it was touch and go whether I would have my lower leg amputated and I was in a wheelchair and quite ill, so I had to give up work. But I eventually recovered really well from that as I wore a horrible fixator and surgeons managed to reconstruct my leg over time and then fused my ankle and now I only have slight mobility difficulties due to this, I can’t run or jump of course but probably at my age I would not be able to anyway!!!!! so most of the time no one would notice now, except I use a stick when out.

But I never went back to work - I have never felt able to and have been pretty ill at first from the accident but as I had undiagnosed HIV from this too

Just as I was beginning to be fully recovered from my accident in terms of my leg healing , I began to feel very ill and my husband of 21 years became even iller!!! We discovered he had AIDs

A bit of a blow to say the least as he has given HIV to me and this was doubly upsetting as I have always been faithful to him.

But apart from that he is a lovely man and has been a great husband and has paid a big price for his one mistake so we are still together and facing whatever comes next?

But we are very lucky as in the UK you get the latest HIV medications and we are both now pretty well and hope to remain so for some time.

So while we do not work outside the home we are not standing still.

We have a small holiday letting apartment attached to our smallholding and let this out and we are expanding this to do ecco holidays in Mongolian Yurts – a type of very posh and warm tent as good as a cottage to stay in : http://www.mongolianyurts.co.uk/
http://www.ulaantaij.com/
http://en.wikipedia.org/wiki/Yurt


This is not my job as I am not physically up to it although I assist him where I can

But he is feeling quite fit now he is on the anti-retrovirals. He is not capable of the long hours he was and will also probably never again work outside the home as he needs to do things at his own pace and often needs to lie down for a while in the middle of the day - and employer would never understand this.............

But he is working hard when he can outside at the moment laying paths and putting up a cabin for the shower and the ecco composting toilet, ready for the arrival of our first Yurt at the end of November – we hope eventually to have 3

So we are looking forward and not back