How has living with a health condition changed over time?
“Life is becoming narrower for me.”
A new reality and the uninvited guest
by Steve Wood
This is now
By the twitching of my thumbs,
something wicked this way comes,
a tidal wave of tic and tremor,
the ” can I move my foot” dilemma ,
falling from a standing start,
Laughing at the growing stain,
put away the constant pain,
you are the man whose mind is great,
but also he whose brain is always late,
to every party others love,
the severed hand in limpid glove,
the foot that twists,
the eyes that water,
the reminiscent well of laughter,
some days I am the man that was,
and then at times I am the motherfuckin boss.
This next is then
50 years,
Mild thrills, few spills,
I did my bit,
I paid my bills,
I loved my kids,
My partner too,
My course was set,
My aim was true,
My brain began to let me down,
Fewer smiles, far more frowns,
Pain and stiffness, left sided tremor, Movement becoming a constant dilemma, A “normal” day now tires me out.
12th December 2019, a Thursday,
My uninvited guest came to stay,
Turns out he’ll never go away,
Messing with my brain, my pain, my walk and my talk, All that is me has begun to fray.
Dreams
by Lynn
This morning I knew I had to come here today. I woke up at half five, and then I thought no going back to sleep. It’s too early, I don’t want to wake up then. It’s been six o‘clock the past three mornings. Then I woke up at half past seven and again I thought no I’ll go back to sleep. Eventually I woke up at eight and felt totally groggy and it’s taken quite a bit to pull myself together today. Normally I’m pretty chirpy, but it’s just with all of these procedures I’m going through and stuff like that. Hopefully it’ll come to nothing. Well, hopefully they can find out what’s wrong and it’ll put me right.
Going through these procedures does I suppose remind us of getting my HIV diagnosis. I remember when it actually happened. I went to the clinic which was in the general hospital then and I went there because I am a widow and had been sleeping around a bit. I was a widow when I was fifty and stupidly hadn’t taken any precautions, so I thought well I better go check and I did. I remember the woman said- she was lovely, I remember her she was a nice big fat jolly woman and she said, ‘yeah you are positive.’ And I just sat there. She went ‘No tears?’. I remember feeling well it’s only one more thing to deal with.
What pisses me off is taking this medication, it just makes you feel so ill. You have to take medicine that empties your bowels before doing these procedures. I usually have a good relationship with medicine. I have angina which I take one pill in the afternoon and one at night-time and I take my HIV medication at nighttime. It’s not something I think too much about, I just deal with it.
When I was first diagnosed with HIV, I had bad nightmares, which they warn you about. They were really vivid nightmares, where you wake up and still feel like you’re in it.
I still have vivid dreams though, this morning I had a lovely dream. I was half awake and half asleep and I was telling myself ‘I’m just here and I’m healing myself’, and I think that’s why I struggled to wake up this morning because it was so nice. I don’t remember what the dream itself was like. Now my dreams are a beautiful space that I don’t want to wake up from.
Life closing in
by Pat
I am looking back twelve years, 2010, I was aged sixty three and newly retired. Still on medication for the depression that had caused me to leave work sooner than I had planned but feeling hopeful for the next stage in my life. No aches or pains, the biggest problem was how I was going to fill my days.
But my life was closing in on me. My husband was ill for four years before he died in 2018, I had been his sole carer for all this time. I had to assist him physically to stand up or get out of bed and it was then that I first noticed the pain in my hands when he held on to them. My grip has gradually become weaker which affects mundane tasks like opening bottle tops or lifting pans from the stove. Now, when I buy such items I have to find someone to do this for me, child proof tops are impossible as I can’t push the sides in while turning the lid. It makes me cross and I feel marginalised. One group of society mustn’t open them, the other can’t.
As a child I was always a bit round shouldered but nothing was made of it and it didn’t stop me doing the things I wanted to. Looking back to working life I recall having to carry my heavy briefcase over my shoulder and wondering if this would cause me problems later. I don’t know if it did contribute to the stoop that developed gradually over my later years but nothing I can do about it now. Walking any distance leaves me breathless, the physiotherapist I was sent to told me it was simply that I was hunched over causing my lungs to be constricted. She gave me exercises which have not helped. So now I use a walking stick and walk more slowly. And feel old. And embarrassed. Going out anywhere with friends is problematic as it is natural to chat as you walk along and I can’t do this as I need all my breath just to keep me going.
Life is becoming narrower for me, I have had to give up going on outings or to events where walking or even standing for any time is needed. I miss this aspect of my life greatly as I had joined in everything that was offered. I can no longer keep my small garden in order, change a light bulb or reach some of the shelves in my kitchen. Routine tasks like changing the bed or hanging out the washing leave me breathless. I have to sit at the kitchen bench to prepare my meals. Employing people to do things I once could is stressful and expensive but I no longer have a choice.
In one way I suppose I am lucky, I have all the disability aids in place and when I use them I think of Michael and how he needed them too. I haven’t started to use his stair lift or mobility scooter but they are ready for me.
When the time comes.
Diagnosed
by Pauline Hass
When I first got diagnosed, I was very, very angry and was banging my head against a brick wall, trying to figure out where I got it from. It took a while for me to figure it out. Think it happened one night, when out of the blue, my sister, Sandra called and asked me if I want to go to her friend’s wedding, which was the Saturday. I wasn’t doing anything that weekend and didn’t have a partner in my life at that time. So Sandra picked me from my place on Saturday morning and later on we went to the wedding which was held I think at the couple’s house. Very small wedding.
This guy started speaking to me and we spent most of the evening together. Didn’t know him from Adam. A complete stranger. Then he asked me to go home with him. I said no a few times. He practically begged me. So I eventually I gave in. He was a friend of the bridal couple. So I kinda trusted him. So I told my sister I was going home with him. I was drunk. First time I ever did this. So the following morning he took me home. We kept in contact for a short while. He was going away on his December holidays. So just left it at that. None of us contacted each other again. So first time in my darn life I have a one night stand and I get HIV. I didn’t realise it at that time because I was diagnosed a few years later. Only symptoms I experienced was I used to get flu like symptoms, mostly sniffles just before and after my periods. I thought this was normal, because it lasted until I was diagnosed. Not knowing it was HIV. All the times I used to go to Doctor before being diagnosed, not once did they do a blood test. Suppose it wasn’t necessary at the time.
Fast forward to today. The anger has lessened a lot. Just take my tablet automatically every night. Most days I forget I have it. The only thing is, none of my family members know. There is very few people that know. My husband, my best friend Cheryl, and my previous Team Leader and previous Manager that I used to work with.
Sometimes, Jorn and I have a conversation about whether to tell my children and my oldest sister Judith. During these conversations, I always freeze and my brain tells me not to tell them.
I am not sure why I never told my family in the beginning of me being diagnosed. All I know is that Judith is a worrier and 71 years old and she has her own health issues and family problems, so at this stage I cannot tell her. Can’t add my burdens onto her. My daughter, Tanya is still in South Africa. It would be unfair to tell her on the phone or video call. Sylvester is in the UK with his family. I often baby sit for them.
But I want all my children to be present, one day if I do tell them.
Dying? Not a chance
by Mark Barham
I am taking you back around 24 years ago. I was on quadruple HIV therapy and unable to work due to all the different side effects, nausea, night sweats, and being high on the tablets. I was able to apply for Disability Living Allowance, now it’s called PIP. I was advised my DS1500 would help, I was confused what this form was and how I was to obtain one.
An appointment at my GP surgery would give me these answers. This was one of the most shocking pieces of news I have ever been given.
My doctor advised me that as I was diagnosed HIV positive, I would not live past 30 years old, I was 25 at the time. He then explained what the DS1500 was, basically it says you have 6 months or less to live. You also get them for cancer as well.
Being told this is kind of weird, you don’t want to accept it and you don’t believe it. So many of my friends were dying around this time and I was scared. I only had just lost my sister 2 years previously, she was murdered in the Philippines, so I was still very fragile from that.
I was upset more about this than I was after the news of my sister. I didn’t go out much, only to the local HIV support centre which was LEAN back then London East Aids Network. I had some amazing friends which helped a lot.
I had not told my parents of my diagnosis at this point, partly not wanting to put more worry on them. So I dealt with the news with the help from friends, so I was not alone. I thought I might want to do things before I die, like hot air ballooning or seeing Australia. But how the hell was I going to do it all? I wanted to stay positive, I have never been a depressed kind of person.
So I applied for a few credit cards, after getting DLA the credit card companies took that as income so they were willing to give them to me. I had about 6 and maxed them all out, I thought what the hell, I thought I would be dead soon and won’t have to pay them back. How wrong were the medical professionals and I.
The pills started to work and my viral load, the amount of the virus in your blood, went from over a million and half down to undetectable. My 30th birthday came and went and I was still alive, this I was glad of. Even though I was well my DLA was not taken away as it was given for life, at that point.
Then and now
by Violet Rook
In the 1980’s my parents died within three months of each other.
I remember standing over the grave of my mother with my Dad, he and I both knew how ill he was, and I could see in his eyes what he was thinking. Of course this was repeated when I stood alone after his demise.
Both died of cancer. I had nursed my mother, getting her oxygen cylinders regularly to help her breathe. Then my Dad who despite vomiting a lot kept going for his wife’s sake until he finally lost hope when she died.
I wonder what they would think now and what they would think about the pandemic. Despite the distance in time, many aspects of care have not changed. It still remains the luck of the draw, what care one receives and often depends on where one lives and one’s demographic area. Ageism and class play a big part in healthcare. But now these are strengthened by the use of algorithms used to diagnose illness.
When one rings up any department one is aware of the algorithmic processes used to distinguish patients. If one answers yes to a question or no, the answer will result in a differing aspect of care.
The next development will be more use of Artificial Intelligence or AI, and this does not just mean robots.
My skin and me
by Jean Angus
Summertime and choices must be made My longest trousers and dresses
To disguise my spotty distresses
No more shorts and minis No more shapely legs
My younger liberty
The envy of my aged cage
I debated giving up the things that I love To glide in the water
To freely move
But find that I am resilient yet
I cannot shake my conscious self
But age has given me a thicker edge
To brood about my skin and former nature Is a woeful and bitter response
I know what is harmful to my mental state I shake my fist at the world
Just like my younger mate
My spots are scars
My suit of armour Wear with honour And ignore the horror.
No drugs, no cure
by Mary O’Sullivan-Fawcett
Our blood ran cold
Not only had we been given the worst diagnosis possible We’d been given a death sentence
And informed that there was no cure at all, no options
At least you normally got a “we’ll start with this and, if that doesn’t work, there are other options”
These though were the chilling facts, one tablet to maybe give you one month on a year but it was not totally clear if it did do that, or worked in any way, at least we got truth
Your body will shut down, “we can’t say how slowly”
Prognosis. Your life span from now is between three and five years
The tests to confirm the diagnosis had been brutal
Doctors had offered to do them quickly, they knew what the results would be Done over five days, admission to hospital but home every night
Where we would hold onto each other whispering our love and saying we’d get through it Whatever it was
On day six we arrived on the ward but it was as though a switch had been pulled No-one met our eyes, the smiling, cheerful nurses were gone
They carried themselves differently, spoke in soft, almost reverent tones
Left us alone with a blackening cloud over our heads
So we knew before the consultant even spoke to us it would be bad
What we didn’t know was that there was nothing that could ease suffering Could slow down the progress of the disease
That making life as easy as possible was the only thing to be done
We would be gently enfolded into a clinic, we didn’t really want, that would see us through
And so it began.
Diagnosis, the Golden Ticket
by Tony Moore
Then.
Before my diagnosis of Autism, I was a different person. I knew what I had. I knew how it affected me. At times I loved myself. I owned and indeed loved my Autism. I didn’t really need to know my Autism too well to fall in love with it. Autism was defining me and what is there not to love about me? It is also true though, that before my diagnosis, despite not needing to know too much about my Autism for my own self-esteem and self-worth, others seemed to be fascinated and indeed needed to know more than I knew. This was most visible and indeed most audible in the workplace. Then, I was put into a dark scary place. I could not, and indeed should not have had to explain myself. I had come out as “gay” in a world where nobody needs to come out as “straight” Why should I also be required to come out as “Autistic?”
I panicked, I overthought things. Self-Harming, which had been a coping mechanism, indeed a friend I had control over for most of my adult life now started to take a more dominant and dangerous backdrop to my life. My self- esteem and self-worth were stretched to their limits.
Now.
My diagnosis has given me a script. I can use this script to explain myself to others, to explain myself to myself. To understand myself. To fall back in love with and own my Autism and to love myself again.
This is now. This is the future.
Life batteries depleted
by Dr Larry Gurney
HIV in the late eighties/early nineties.
It was scary in some ways. Why? I would say because of the unknowns but ironically the known was the fact that there was a diagnosis. Three years to live as things were.
But somehow that was useful as I had just had cancer a year or so earlier that didn’t kill me. I’d just lost my son so futures were not too happy feeling.
So I decided to throw myself into speaking out. Doing something positive. Three years of 100% all rules gone. Yeah I could do that with purpose. Activism. Surrounded by people.
But then I didn’t die. And now living with HIV, I can do nothing special. I can make little or no contribution. Now I feel more lost because I am found.
But what I’ve got left with is the product of what I gave up. That was normal. I’m bored because I used up all my batteries running on 100%.
Just alone.