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HIV and Us!

This is our story ........ of a married couple who have been with each other as a couple snce 1984 and known each other since 1979 and now married since 1987, finding out we both have HIV and trying to live and together and well with it. And this blog is to document the last journey together we now have to make. It is going to be hard with many twists and turns But we are determined to live our lives well and to the full - and we do!

Wednesday, 25 April 2018

Memory seems to have gone

Posted this somewhere else . As in such a state today with my memory, could not even negotiate Facebook today.
And that is REALLY worrying. As been on Facebook since it came to the UK in about 2004?
So it is now second nature to me now and as easy as just living.

I am so VERY worried about my memory now.
_________________________________________

Not sure I remember even my name right now.
Had a bad few days re my memory

I often do but this was so really worrying.

This week I have had a whole week of health appointments.l That I have carefully written down, in my physical calendar., on my Google calendar, on my phone. Yesterday I knew I had one then, another today and another on Thursday.
Yesterday was the first day in over 2 months I was allowed to drive, since my hand operation. So was determined to do it all myself. Drive myself, remember myself, and not rely on Barry.
He has his own health issues and he does not need me to be so dependent.

So I got there, and on time. For what I thought was my 3.50pm diabetic nurse appointment, only to find I should have been there for my 3.10pm doctors appointment to review my meds.
I had got the times right but had transposed the appointments???

Thankfully our HIV medications are separate. Not issued by the GP. But every 4 months by the hospital at the HIV clinic.
So at least I have them.l

But only because Barry has HIV to and we make the appointment so we go together and he drives. If I did not have him. I may well miss that or get it wrong too.

But re my routine meds and my GP appointment. I had missed it?? I had missed my doctors appointment and now I have to remember that I had to go back today for my diabetic nurse appointment.

But have to see my doctor as they will not issue and more repeat prescriptions for my regular meds until I see a doctor? Blood pressure, statins, pain stuff etc.

So while it was a was a wasted trip, I thought at least I can book another appointment for the one I'd missed while there.
So I tried but told I cannot book it there.

That the only way to get even a regular appointment at my GP is to ring in at 8.30am and make a routine appointment?? I had had this appointment booked for over 4 weeks. But now it seems you cannot even book a routine appointment, face to face, while in the surgery.

I also had another, very worrying, memory loss while there.
I had to put Barry's repeat prescription in. And collect my neighbours medications as he has had a stroke and cannot walk further than a few yards and cannot drive atm, so we do this and a few other things for him..

And I forgot!! How could I forget this???

I was half way home before I remembered and had to go back!!

When I got back, I had to give his name. To get the prescription.
So having forgotten it once before - my memory loss is not new but worse now -
So having forgotten it before I had rehearsed his surname, Grenville, so I could get it right and pick up his meds.
So I said can I have Mr Gr********'s my neighbours medications. They asked me his address, and I gave it OK - I should as only lived next door since 1985!!

But then asked me what his first name was............................

I could not remember it!! I TIRED AND I TRIED?
But my brain just did not compute. Yet he is my neighbour.
My only neighbour??

And one of us pops into see if he is OK every single day, since September when he had the stroke. And we do what he needs and so I well know his first name. ~Yet no way could I recall it when asked ???

And yet I thought I was doing so well??
Well to just get there and remember I had to pick up his meds anyway. Yes I had got my own appointment wrong. But was happy I could at least do this for someone.

Thankfully the pharmacist on yesterday knows me, and very well. She may be should not have, but she saw my problem and whispered his first name to me, for me to repeat and get his meds.
Thank you so much C***

But before I went yesterday, I thought i was doing so well.

As before I had to leave for the health appointment I was so trying to be so together.
Got up at 6.30 am, my usual time.
Then cleaned cupboards in the kitchen. Cleaned other things that so need doing. And are rarely ever done. I was determined now my hand is usable to start to catch up.

And went up to the freezer in the shed to get stuff out for yesterdays evening meal.
I thought I was so on the ball!

But the freezer was so very full.

Has to be now living where we do. Living where we do I have had a very big freezer for years. As I do not want to go to the shops every 4 days or less, if not going in the direction where a shop is.
I guess for some it may seem the shops are not that far. About 5 miles to the nearest supermarket. Maybe less that 3 to the nearest shop at all?

But all require me to drive too.

But now I am retired, I do not routinely go out to anywhere on a regular basis. When I did I used to get my shopping on the way in or the way out. Even when just doing the Yurts I used to combine my own shopping with shopping for the business.

But now being on a fixed state pension, as cannot afford the fuel for unnecessary trips.
So as I only go out rarely during the times shops are open and try to combine any shopping with trips with going out for another reason. The freezer is so key to why we can continue to live here.

So I delved through the freezer in my outhouse yesterday to find something for our dinner. Found it and made a lovely Jerk Chicken and rice and peas. For us and a friend staying here atm.

But the freezer in the shed, it is full!!!

So I had to take a lot out to find what I wanted. So I put a few thing behind me on a ledge.

Got what I wanted, took it down to the house. And at least when I got back from my failed attempt to see my doctor I did cook a really lovely meal with is. Not just for me and Barry, but for a friend too.

But I forgot totally I'd left the stuff I took out on a ledge behind the freezer??? Got to have been over £50 of food?

I remembered at 3am this morning!!!!
It woke me up and I have had no sleep since.Went up the shed where the freezer is to check and yes.................. I had left all this food out!!

So since 5.30am I have been cooking!!
To try to rescue this food? Just cannot afford to waste this food.

And I now feel so totally awful, dizzy, tired, in pain from my ankle, and back, and hand and a lot more....................................................................................

So while I made my 3.50pm appointment for the diabetic nurse today. The one I got wrong yesterday. But only because Barry reminded me and drove me to it!

I could never have driven myself today. So glad he could.~ But he has cancer.
It should be me looking after him right now!!!!
But the reality is it is him looking after me.

You may think this is funny.
And it is.In a way I do also.
But my mother had dementia. And many in her family.

Living with HIV I am more likely to get some form of it.~
So its not funny as I am very scare

____________________

I still have such very good recall of things 15-20 or more years ago.
But sometimes I cannot remember what I did just now?

Given the history of dementia in the female side of the family.
And given that I live with HIV and not diagnosed until I was very ill, CD4 75 , and ill . Yet hubbies CD4 was 8 and he was more ill, but his memory seems OK

So may not be related ??
I am so very scared at the moment
Posted by HIV and Us at 09:29 0 comments

I am turing into a grumpy old woman

I'm turning in to a real grumpy old woman.


Was not at all happy when a woman at a gig on Friday night picked dog hair off my jumper while in the queue for the loo. Yes it was a bit of a mickey take but I should have been more graceful rather than giving her a mouthful.
And not had an argument with the woman in Lidls that barged past me at the exit and nearly tripped me up.
As this is such a small community this end of Cornwall. So could meet them both again.

So last friday night we went out to see a reggae/rasta band in Falmouth. MACKA B & The Roots Ragga
They were good. The real deal, actually all black rasta doing their own genuine stuff.
Most of the Reggae/ska bands we get here in Cornwall are of the ska/rudeboy/white/skinhead derivative, sometimes with one black person often not. Who do only covers. Even UB40, both ones, Ali's and his brothers one, that we have seen here do mainly covers.
It was great to be able to see this band here.
They were good.
But I had not gone out except to see close friends since my hand operation nearly 2 months ago and not to see a band. Have put on a few pounds due to inactivity, so could not find anything to wear I felt OK in and did not highlight my big belly. So choose a baggy dark Grey tunic with black leggings and a thin black baggy cardi that covered most.
I do take pride in my appearance when I go out.
I try to make the best of what is now crumbling.
But we all age, or will one day. And it is hard sometimes.
All my clothes were clean. All had been washed, put back in my wardrobe and not worn since. I am aware that many of my clothes have animal hair on them. I have 4 dogs, many cats and ponies that are shedding their coats for the summer right now.
So as well as washing my clothes I also spend time de-furring them, before putting them away..
Most at the gig were younger than us, not all but most.
But that's OK it is often the case now. But does add to my feeling self conscious at times.
But I was OK, until I went to the loo and into the bright lights of the toilet.
The 'ladies' was full of mostly younger women, some very high.
But all OK.
Stood in the line and the younger woman behind me - well not that young maybe 35+ but that is still at least 30 years younger than I!! -
Started to pick at the back of my black cardi??
I turned a bit bemused about what she was doing and asked what was she doing and she said 'picking off the dog hairs'!!
Well maybe she meant well? She did add I love dogs??
But .................. another time I would have laughed, had a bit of banter with her. I think that was what she expected?
But it spoiled my evening. I gave her a mouthful.
Yet I think she probably meant well so I now feel bad I did now.
But why do I have to be so unfortunate to have someone do this to me when I am feeling vulnerable?? I would have preferred it last night if she had ignored how I was dressed and the hair and just got on with her own business. As I was trying to do mine.
I looked at my cardi when in the booth. For me the animal hair was very minimal. I'd missed a few but only a very few!
I'm off to Porthleven Food Festival today.
Have no idea now what to wear?

Maybe I will just go with the flow and wear one of my ponies turnout rugs?














Posted by HIV and Us at 08:07 0 comments
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