Wednesday, 28 December 2016

I do not have Bi-Polar at all

I don't have Bi-Polar. But I do have another labeled mental health issue that I have been long diagnosed with. At 15 and I am now 63. My poor parents were once told I'd never live a 'normal' life?

I am so very glad they both lived long enough to find I could and so very much did

- trained as a teacher and then a youth worker and I know I was useful to so many

And so grateful they died before they knew I had HIV.

I can't cope with well, and so thankful they did not see me crumbing as I am now.

Well my mum did live a few years after my diagnosis but she was by then blind - She was partially sighted all her life but was blind by then and at the time of my diagnosis she had  has
Dementia , which I so fear too.

People with HIV, even with the now marvelous medications we have are  more likely to get
Dementia, and a lot of other things
And my mum her mum, her mum etc, etc, died of it

I value my brain above all else. But I may very well lose it

I have had many friends with Bi-Polar, and I have, over the years,  got on so well with those that do.

Once I even sadly had to call the mental health team/ambulance etc for a dear friend with it who was, sadly, having a very massive 'episode'. This was so very hard, I cannot explain how hard it was??

What a decision to have to make????
And then, from the very minute she was admitted, I fostered her child until she was well enough again to look after him again

- he is doing so well, been to uni, and a lovely person by all accounts. She is, as far as I know, good  now and settled with her partner. I am so thankful I could help.

But wish I saw her now. Or her son? If even just now and again.

She also helped me, and very big time, before this, and so very big time too.

When I had my accident and was so weak and ill - had an infection in my bones - and non weight baring anyway. I could not walk at all and my husband was at sea.

It was her that came to collect me from hospital and while I was in there as Barry was then at sea.
Actually I discharged myself. Another story of yet another abuse/lack of care by the NHS.

I was readmitted 3 days later with this infection and was critical on IV antibiotics for a few weeks, but thankfully not into St Micheal's ......where they had missed, how ill I was, despite me saying and saying!! I was suffering an infection

Yes I did. She saved my life by coming to get me that night. I would not be alive if it was not for her!!!!

And she had, in the meantime got all the things I needed at my home for when I returned to be able to survive once at home - aids like a wheelchair, perching stools, crutches, walking frame, toilet frame and seat, chair I could sit in etc, etc

And it did not end then.

She came up to see me daily. Every day for about 9 months, every day???!! I could not even walk then, nor often then get out of my bed. Pretty much no one else did I see. Excpept also Sandy - Sandy I cannot also thank you enough.

Even though up to the minute i fell off my horse and big time on that hill - and was airlifted to Treliske ( Royal  Cornwall Hospital) I thought I had loads of friends.

Well I thought so as they were here most days, eating my food,. drinking my tea and coffee, their kids riding my ponies, us sharing so much due to our kids being the same age??

But the day I fell off my horse that all ended

But this friend, no she carried on being a friend. She came to do the things others could not or would not do.
I did have a daughter but she was only 13 and at school, I tried not to put things on her, I so really tried. This friend, with Bi-polar, and struggling herself at the time. Came up to see me and fed my daughter almost every day.
I owe her a whole lot that I can never repay

And I also paid a carer, or rather a caring business, Penhellis -- changed hands now so that they were lacking no one can do a thing about now.

The actual people that did the caring  got shit all --- to come in twice a day to get me up, get me to the loo ( if I had to go between the times her and my friend were here I had to crawl ) and give me a cup of tea.
I paid them quite a lot of money to do this

But one was outstanding Rachael. She also in my view saved my life. She went above and beyond the pittance she was paid to do her best for me.

But others , sadly no long out of my life, as either dead or are just not in my life any more, did so much also.

I owe my life that I still have it to the very few friends that were there then and stuck with me then.
Roma, Gelly, Sandy, Ali, etc .........what can I say or do? I can never repay and not at all now as some have since died

But I hardly ate as no one cooked me anything, this friend did get me some meals however, for which I was and am very grateful. But there were a lot of days I never ate anything.

But the bonus was I lost weight LOL!!

But my friend came in every day and of course for nothing.

And I also owe a debt to my other friend at the time that then lived in my caravan. She rented it, so was a tenant Sandy.

Who saw to my cats and dogs. When my daughter, understandably,  could not

Sadly I had to get rid of my then 5 ponies, my goats..loved my goats, chickens etc ..... either it was this or I would have inflicted cruelty on them , and this could never be allowed to happen

Jaffa he went to a riding stable as no way could I part with him. But the others, so sadly, to Barry Rowe a local horse dealer ......... it broke my heart .......I still wonder where they are? I loved those horses. Two of them I bred

But all my other friends just faded away!!

As all/most except them that love you do when you are on hard times and cannot give them what they want from you.

Even more have faded away since my diagnosis of HIV. Sad isn't it!!

I am guessing that why I do get on with those who have this, and have had many friends with it, because some of our behaviors, especially this in the meme below, are similar, so we understand each other. But because I do not have the manic phase, I can be level headed when they have been high, so have helped to hold those I know with it together and to get them help when need and reminded them to take their medication - when you have Bi-polar, someone who is not perturbed by how you are and 'gets it' to 'remind' you to take your medication is in fact so very important.

And I am so very glad that Bi-Polar is now beginning to be understood and be less stigmatised.

But sad for me that my diagnosis isn't at all.

Monday, 6 June 2016

I do not think I am cut out for the 'hospitality ' thing' ??

I do not think I am cut out for the 'hospitality ' thing'??

A very good friend at the time, Gelly, said when I first decided to let out Yurts, camping and the Studio flat to visitors 'are you sure? I am not sure you have the temperament for this?'

She was totally right, I don't. But I have done OK during the last 8 years or so.
As we/I had no choice.

We had both been diagnosed HIV positive??

Barry had lost his job and directly due to this. We had no money, few savings and a too big house and land to maintain and animals that depended on us.

And we were too traumatised at that point to even consider selling up and moving.~So we sunk the little savings we had into it and despite my 'temperament' we made it work!!!!!

But I guess now I have stopped my main business, the Yurts, I now have less patience?

The visitors three weeks ago seemed fine.
Except when as when they booked, it was as a couple I had only made up the one King size bed?

But when they arrived they did not want to share the same bed?? And said they thought it was a two bed apartment, when all my advertising plainly says it's a one room Studio flat!!!!

Even though she kept referring to him as her 'boyfriend'. She was aghast that she may have to sleeping the same bed with him!!

She was from Brazil he works for london transport and they were 49 and 50 years old, so not either young or I thought , inexperienced??

Not sure he realised she would not share his bed??

But OK , I made up the sofa bed and very quickly. But just wish they had made it clear before they arrived?

From then on it all went pretty smoothly.
And they were interesting visitors as visitors go.

As her grandfather was fascinatingly born and lived in Helston near us in Cornwall and she had always wanted to come here to see where he came from?? That is such great history and I chatted to her about her memories of her Cornish grandfather, who of course was a miner who once in Brazil for work, married a Brazilian girl and stayed and it was very informing and interesting!!

But I have to admit, I was a little taken aback, when she out of the blue,!!!!!!!!!!!!!

................. suddenly pulled me out of sight of her ' boyfriend' grabbed me by both hands, said ' I have something very important to tell you'

starred into my eyes and said - Jesus loves you, you are saved??

And tried to continue, still clutching both my hands and staring into my eye, telling me all about Jesus!! And how she knew and for sure, he had forgiven my 'sins'?

I was a bit relieved as I thought she was going to tell me about her sex life or lack of it, or to complain about the size of the room!!!! or that it was not 2 bedrooms??

I had no choice but to disengage from her and to say - but very nicely - so not to offend as I respect all peoples beliefs and religions and their rights to have them.

'Sorry I am not a christian and never will be? But I thank you so much for your thoughts.'

I have since realised she had looked me up on the internet - we supply free WiFi- and realised, as my name is easily Googled and we are open about this .......that we have both have HIV, that we live with HIV, and she then must have thought I am particular need of saving??

Very ironic as my husband got HIV from a women he met when working in Brazil ??

And I have been faithful to him since 1984!! what crap assumptions people make about those that live with HIV??

Not all are as religious as her or their religion says no to sex outside marriage - but each to their own? and I got HIV from sex, but with my husband who I am, of course, in any religion, 'allowed' to have sex with, without it being a sin!!!!!!!!!!!!!!

Oh well!! But her obviously staunch Catholicism explains why she was not willing to share a bed even at 49 years old and single, with the man who had paid for her ticket to England and was paying for her trip to see her roots.
But not sure he got it before he got here??

But that was OK. Their business , not mine.

So she, and he, mostly her, were fairly interesting. All went well during their stay. Until they left on the Saturday and the next people arrived the same afternoon for the flat?

I had spend since they left cleaning etc and it was a bit more dirty then than for most and with two beds to wash as well?

But fine. That is my job!

But it was not at all 'fine' in my book when the new visitors ran out of gas on their very first evening!!!!! -

I guess the women from Brazil felt the cold???? And OK I get this. but she burnt any profit we may had made that week and then some!!!

We have no mains up here so gas bottles does the heating and hot water in the Studio.

I had had two full 47KG bottles or propane connected when Mrs Brazil and partner arrived. Costing about £70 each. I usually recon in one bottle even in the middle of winter for the Studio flat, at most a week. But somehow it seems they had used two bottles??

Must have had the heating up full blast all 7 days and a shower two if not three times a day for both of them?? Cleaning away their sin perhaps as I am pretty certain they ended up sharing the same bed??!!! Do not ask me how I know this, TMI, but I do and they did!!!

But OK, this was their concern and the gas, I guess, it was not the new visitors worry it was ours.

So we panicked as we had no more gas bottles of that size that the Studio flat requires to effectively run the gas boiler. They are too big to collect ourselves and none could be delivered here until the following Wednesday. So we put a smaller bottle we use for our own gas cooker on it, Barry had to carry it, further hurting his bad back, and crossed our fingers it would do.

It did, thankfully. But we could not cook ourselves for a while. As could not get gas bottles delivered until the next Wednesday and then it was Sunday. But that was not their problem

As a family of two adults and two boys, paying to stay, they at the very least expect to have hot water and heating.

They were very good about it.~ that it took a while to get them hitched back on with gas.
~but it seems were not that enamored with what else we are offering in the studio?

The said in the visitors book..................

We have a lovely view but the Studio is too small?

Well we make it clear it's really suitable for couples but if you do want to save money on your family holiday and squash a couple of kids in as well, then that's fine by us and we will even supply the bedding and make up the Sofa bed.

But we can't make the room bigger!!!

They added we need to turn the sofa bed around so you can sit and look a the view while watching TV, or get a new sofa bed!

Totally impossible, there is not the room!? That sofa bed is the only one we have found that fits and it will only fit in one position - but heigh ho!!!

They further added that need to get a screen for between the king size bed and the sofa bed??

Well you are paying the price for a one bed Studio. And cheap even for that??

So in my view if you want to have nooky without your kids seeing , then I suggest you book a two bed apartment and pay the price for that, or just wait till you get home??

They also added that we need to get the lane fixed, as to bumpy and too narrow - Oh I soooooooooooo wish!!!!

We'd love to get the lane fixed!!!

It does not do our cars any good either.
Does anyone think we want to live up a lane that is like this??? If we had a choice???

But it is a 'non adopted lane/bridal way.
and not directly ours or any ones responsibility

~Yet in fact up until this year my husband went up and down the lane, every single year, for over 30 years!!!! filling potholes with concrete and bags of DIY ash-felt hand.......for over 30 years!!

Occasionally others who use this lane have contributed something to keep it usable.

And in the many years until the last 10 years the farmer next door would occasionally get a load of ashfelt from a friend to fill the worse of the potholes and we would help him lay it.

But not in recent years and not ever our next door neighbors and not anyone as consistently as Barry for the last 30 years!!!!

But his back has now given out , finally. And he is just not capable of pushing wheelbarrows of concrete or whatever, up and down that lane!!

But we would always join in and contribute a fair share to get it solved.

But no one else who uses it seems to have any interest and some damage it far more than we ever have - i.e tractors, lorries and recently a JCB???!!!!!!!!!!!!! going up and down all the time, that really damages the lane etc.
When we have only ever driven cars up and down it??

But we cannot afford, not on our own, to put it right? To ash-felt, or whatever, it on our own, but we are here and always willing to contribute. If others would??

It seems no one else that uses it, has any interest whatsoever in paying anything to fix the lane??

This saga does not quite end there.

Those in the Studio until yesterday also did something that really got to me - they put toilet paper in the key hole in the door between us and filled up the gaps in the door with this and cushions and other stuff, between us and them?

To me this was a huge insult.??!
They could never hear any noise from us as we deliberately and carefully do not make any.

Hard to explain the situation - but

But the Studio we let was once our 'granny flat' for my mother in law.

It has its own en-suite bathroom, own heating, own front door. It is completely self contained from our house. But because it was built for our then over 80 year old MIL there was a connecting door built in between us to the house. For her then safety

But while we have not taken it out. As you never know when the Studio flat maybe needed for a one of us, a family member or a friend in need. In fact when I was in a wheelchair for 2 years or so I lived in there myself ........ with this door open between me and the rest of the house

But we have effectively since blocked it off, for all intents or purposes while we have strangers in there.

There is now a wardrobe over it on the Studio side.

Yes inside, when you open that cupboard, you can see the door, from that side. So I assume they thought we could hear or smell them and they us??

But on our side there is also another storage cupboard. Packed full of duvets, bedding towels and everything for letting the Studio and no noise or anything can get thought?

Least I did not think so?? We cannot hear or smell anything from anyone in the Studio and we are always very quiet.

I would love now and then to have a blast out from my stereo . Listen to music very loud and even now and then have friends around to do so with me.

But since we have let the flat, I have never dared and we creep around so as not to disturb anyone staying.

But what I am guessing happened this last week is...............

Barry sadly now has a very bad back. So unusually he was spending a lot of time on the sofa in the room just behind the Studio. He could not crawl upstairs, and he smokes, and a lot. especially when in pain. Then he smokes more.

OK we know he should not, for his health and it is not PC, But he does and it is his life and his ( and my) house??

But because we let out a small part of it to holiday visitors we have just have to suffer the huge embarrassment and the feeling that we are persons non grata, of our visitors stuffing toilet paper into the keyhole and around the door to keep out the smell, or noise, or whatever, from us???

And that is my point.

I am not suited to this 'hospitality ' lark. As it hurt me to be so non approved anyone.

Barry says 'stuff em ' and they know what we are offering and it is so very cheap ( when we go away anywhere we have never paid as little per night as our visitors do) and it is his business if he smokes or not etc.

But my feeling. If we let out any part of our house to is no longer our house?? Even though we struggled and for so many years to pay for it. As long as we have to let out even just part of it, it is not ours??
So wish we could afford not to do this at all anymore

But reality says ....we have no choice??

Not the end - to be continued

Saturday, 30 April 2016

Prince - His death, HIV and my thoughts

The media. many in the HIV community and many on social media are speculating about whether Prince had HIV and died of HIV complications ( i.e AIDS related HIV opportunistic infections.)

Many are asking why does this matter? It does not alter his achievements, who he was, what he meant to so many.

One blogger I know wrote this on the subject.

And I do very much agree with most of what this blogger said as of course it doesn't make any difference whether he had HIV or not in terms of who he was, what he achieved, his legacy etc.

But as someone who is also living with HIV, one aspect does concern me and feel it is legitimate to express it.

That if he, or anyone, did die if HIV related opportunistic infections, this was avoidable with modern medications. Which he certainly had access to.

Then, if he died of this cause the only explanation is he refused to take them and died because he was in denial.

Denial kills when you live with HIV .

Yes those living with HIV and on ARV medications, do die, everyone does,  and a few much earlier than they may have if they had not lived with HIV. As living with HIV, especially if like us you have had a low CD4 count at anytime. And  this and even the meds themselves can still cause or be partly responsible for early aging and cardiovascular, and other conditions such as bone loss and loss kidney function - both of which which I have - and other conditions that may cause premature death.

However those living with HIV and taking ARV medications, rarely, if ever if their meds are working for them, die of what used to be known as AIDS i.e HIV related syndrome of infections and conditions.

And if it is not pointed out that if this was the cause of his death, it was avoidable. I think/fear  that many who have no knowledge of HIV will assume that HIV is not the manageable condition it now is?

And I think this is stigmatising and sets ignorance about HIV back a few years.

As those that are not aware that if he just took the meds he'd still be alive, and heathy enough to still be performing and creating, they also won't realise that taking HIV meds renders most effectively un infectious.

Which is why of course mothers living with HIV now rarely pass it on to their children, why we can now have children and healthy children, and normal sexual and other relationships even with those that don't live with HIV .

Pointing out that if a very famous person only died of HIV complications ( once known as AIDs)  it can only be because he refused medication, is in my view a valid point to make, for many reasons.

And even though we do not know for sure he had HIV. As there is much speculation he did and it is daily mentioned in social media, I think it is legitimate and necessary to make clear that if he did, he would only have died due to HIV because he refused medication.