So I’ve tried everything to write an article and I feel like I’m losing my mind and my gift to write. Yes, yes; dramatic but that’s me. So I’ll just spill. I find throwing everything out of your pram and just blurting out everything sometimes helps.
I’m currently on a cruise, a Mediterranean one. It’s my birthday gift from a friend. “Good friend you say?” Yes, he is. I started this journey to try and find the other piece of that puzzle to add to my life. I’ve been through a lot this year and have worked really hard to build and move forward with my life.
On June 7th I was told I don’t have dementia. Yeahhhh, but also no. Why? Because a few other health professionals don't think I was told the truth.
They said my brain is normal for someone who’s been living with HIV for 12 years. They also mentioned my brain is 20 years older than it should be. So does that mean that everyone who’s positive for 12 years has a brain that’s 53 years old, as I’m currently 33 years of age?
I’ve been told now to ask for a second opinion as the doctor only went through one scan and didn’t go through the other three when I asked. It seemed like I was speaking Chinese and he didn’t understand me.
My brain still hurts on the right side a lot, the coordination of my left hand isn’t as good at it should be, and odd little things still don’t add up. But as I sat in the doctor’s office and watched him bypass some of the really important questions I asked, I felt he was holding something back and lying to me. I decided that it was my birthday and I need not get upset.
For years, I’ve had to fight for my health. I felt that my new medications were making me feel ill mentally and I was piling on weight. The doctors said the meds were fine, until nine months later when I’d had enough and after gaining four stone (just Google the conversion rate and you’ll know how much that is in your own country) I went off them and realized that my anxiety had gone down, my schizophrenia started to decrease and my weight went down after two weeks!
When rolling into the doctor’s office then, they finally admitted, “Yes, we’ve now heard that your HIV meds do cause weight gain and can increase mental health issues.”
“At what point were you all going to tell me?” Answer: they wouldn’t have. I had to take the drastic action of going off my meds and recording my own health and behavior to get the truth.
So I know that something isn’t right, but as I said to my mother who works in health, it was my birthday, and for the first time in three years I wanted to have a good one.
I consciously smiled, pushed all this to the side and went out, had a meal, a bottle of bubbles with some friends and had the best birthday I can remember. It lasted a week, with drinks with friends and dinners the following nights.
"The chair opposite me isn’t empty. Issues worries and pain are sitting there, but we have learned to enjoy each other’s company and because those three are with me always, we now make sure we live our lives better..."
What does all this have to do with my cruise? I’m still putting it all to the side to move forward. Since then, I was nominated for a Volunteer of the Year award, and a few others. I got into Attitude Magazine here in the UK, I now produce four shows and have my own business card from the TV station that says I’m their Producer and I’m sitting on a ship smiling.
I always say to people, “Fight for yourself as no one will fight all your battles.” But maybe I need to change or add a few exceptions to the rule about this.
There will be a point in your life, hopefully not for all of you, when you feel like you need to give up, because no matter what we do, there are forces that just work against us. Its life! It really is, so what do you do?
Take a break from it all… Honestly, just take a break. I got on the ship only to realize after it sailed that when they searched my bags, whoever went into the bottle of medication didn’t close the lid Out of maybe 30 tablets I have 4! I was told I might have to get off the ship; who in their right mind left my medications on the floor? Why not scoop them up and throw them back into my suitcase after inspecting it?
My friend, as much as he loved me, said something that really hit me hard: “There is always drama with you, isn't there?”
I nearly cried and wanted to get off the ship, but he was right. As I say, there are some forces that just work against you.
I didn’t ask for this to happen, but other people looking in would think, “What a fucking messm” when all you do is try hard to change your life, move forward so as to not allow all that drama to affect you or those around you.
So take a break! Forgive yourself what ever has happened and know that in time it will work out. I came on this cruise because I wanted to be happy! I didn’t want to get angry and fight over a suspicion that the truth is being held back from me as it has been so many times before.
As mom always said, the truth always comes out eventually. But I need to be happy.
HIV is a fucking curse… but it’s a blessing also. It’s just that you have to fight to make it a blessing. If I hadn’t made that decision to smile on my birthday and ignore the fact that I was been ignored with my questions, I would be all angry and I wouldn’t have achieved what I wanted that month.
For the first time, I learned to put things to the side! Remember when adults used to tell you as a kid, “Just put your problem to the side and carry on and deal with it later?”
Who bloody knew you could? I’m giggling now as my mother, when she reads this, will finally nod and say to herself, “Finally, he’s grown up.” I love all that my mom and dad and my big brother taught me. I’m grateful for any advice they gave. Finally I understand them a bit more.
Look, there is a world out there. I think of that as I sit at the dinner table alone sometimes, watching people watch me as I sit there with a smile on my face and I know they are pondering to themselves, “Why is that lad sat there smiling alone?”
I’m smiling because I choose to and I feel I’m having dinner with myself and my issues, but in a civilized manner. The chair opposite me isn’t empty. Issues, worries and pain are sitting there, but we have learned to enjoy each other’s company and because those three are with me always, we now make sure we live our lives better and appreciate the moments we can until I need to face time once more.