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When I started this blog I always said that it’d be used to record the ups and the downs of my life with HIV, recently it’s mostly been down.

It’s almost a year now since I was diagnosed as HIV+, August 2011 in fact, and after the initial shock and crap I endured with relationships etc things floated back up to a happy median.

Lately however things seem to be dragging me back down again though. It’s no one thing, but instead lots of things all coming together that have made me feel like this. I’m becoming increasingly ever unhappy in my current job – it’s only part time, it doesn’t pay very well and I find it boring beyond words. My social life seems to have collapsed like a soufflĂ© in a cupboard and I’m painfully fed up being single.

I’m supposed to be moving house in the not too distant future, my own place in the city centre, away from my parents. On paper it seems like a great idea doesn’t it? But I’m finding myself questioning how wise a move it is when I can barely afford it and there’ll be no social benefit. Then again I can’t carry on living back at my parents can I? I’ve been there over a year and we’re at each others’ throats the whole time.

On top of all this I’m currently hating the fact that I’m HIV positive. I’ve been knocked back a couple of times because of it lately, and last night someone I barely know told me that they knew my HIV status because they’d heard it from someone else. Tomorrow I’ve got an appointment at the HIV clinic to go have bloods taken and a medication review, I can’t think of anything worse – I just want to bury my head in the sand (well, mud at the moment) and forget all about it.

But I know I can’t. Whether I like it or not I am HIV positive. For the rest of my life I’m going to have to deal with: regular visits to the hospital to have 8 vials of blood taken, rejection and being the subject of gossip. I find myself crying each night before I sleep. I really wish I could just take a break from it, even for a few months but that’s not going to happen.

There’s not a lot I can do about it, I guess I just need to man up and deal with everything. Make some changes. Maybe look at moving back to London. Who knows.

Thank you for reading, I hope it hasn’t been too depressing for you.

Over and out.

Sam
UKPositiveLad

17 COMMENTS

  1. Hey – it takes time, it really does. I am in the same boat as you, i found out December 2011. Most days I’m fine, but i have times like this week where i just wish life was different.
    I am lucky that i have a husband, who has stuck by me throughout this. Im sure you will find your Mr soon, someone who loves you for who you are.

  2. I’m really sad to read this. From everything you’ve written so far it’s clear you have a great deal to offer, and don’t deserve to feel like this, although I understand why you do.

    John is right – one day at a time, and PLEASE remember there are people who unconditionally support you out here. We don’t just value you for who you are, but aren’t bothered in any way by your HIV status.

  3. Yes I think we could all do with a break from being HIV Poz and all this entails.
    But sadly it is not going to happen . This does not mean I do not know what you mean or that I do not feel you are brave for telling it like it is on this blog.

    I have found that very few who are not HIV poz understand totally. But thankfully a few do or will learn from you.

    Where are you?
    My husband and I are in Cornwall, UK.
    But we know people all over the UK who are HIV positive.

    If we can help in any way, please let me know?

    Good luck with your blood tests.
    I only had my 3 monthly blood tests not long ago, all is fine.
    I hope yours are good too.

    • Hi Guys,

      I’m in Birmingham. I’ve made quite a few acquaintances via this blog – I guess I should maybe rely on them more. Thank you for your kind offer of help.

      Sam x

  4. Hey mister thanks for sharing that it bring more depth to you and your life. Very real and heart rendering. Take time in making decisions and keep hopeful. Wish you well and hope you get a break x

  5. Hi Sam
    Sad to read this latest blog, yours are normally so up beat. I find it shocking that people gossip so much about stuff they shouldnt. A friend of mine, for over 15 years, told me 2 years ago that he was HIV+. I’ve never discussed it with anyone apart from my partner, who he also knows and said it was ok telling him.
    It really annoys me that people think its ok to discuss such private things with anyone, but once it’s out it’s hard to sort it.
    The only thing I can say is to dig deep, go and see the friends you have got locally and know that this grey cloud will blow over. You’ve been so positive with your outlooks, knowing that you have to live with this but as you know you’re not alone.

    I hope my virtual hug reaches you all the way from rainy Basingstoke! If you ever wanna shoulder to use then let me know, I’m a great listener.

    Hugs
    Mark

  6. Never let anyone put you down especially those people you don’t know. As for living at home i’m in the same boat just can’t afrord to move out either. I really hope you start listen to those people who are closet to you. Plus never lose hope and try never to give into the sadness i’ve been there and it hard to get out of. Well heres to a bright future fot you plus you are a great writer, ever thought of taken it up properly.

  7. Hi Sam,

    I’m going to be blatantly honest with you. It doesn’t get easier. There, now that’s out of the way, I’m going to give you some suggestions that might make it a little bit more bearable.
    At my clinic, at the moment, I have the most wonderful doctor. She’s relatively new and I hope to have her for a lot longer than the other doctors.
    Some positive guys (and gals) are really lucky, they find a practitioner and a clinic that they’re happy with from day one. It has taken me 13 years and even then, I’m worried that it’s all down to government funding and I could quickly lose it again.

    Depression and anxiety are both enormous problems for positive people. In fact, one could say, that the virus itself is the least of our problems. What you need is a social worker. Someone you feel comfortable with to talk through all the crap of life with. Someone who can give you a slightly different slant on life. I have one now. She’s Irish and I absolutely adore her.

    The love life thing is difficult. Don’t let it define you though. Become yourself first, define yourself, then let someone else into your life.

    I’m not sure if your clinic has social workers, or if the NHS offers them, but trust me, they are saviours for those of us who spend far too much time inside our own heads for our own good.

    In the meantime, buck up honey. Don’t let HIV define you, make sure you define your HIV, you are its master, not the other way around.

  8. Hi Sam,

    When HIV was forced up me I thought that my entire world had come to an end but I remember the words of my wonderful consultant who just said to me: “you just live your life and let us do the worrying.”

    That’s pretty much what I have been doing. In a flash ten years have past and while things haven’t always been easy its not been the illness that has been the issue.

    For me when I have a stable income and a job then everything else falls into place. I have never been cute or sexy so have never really worried about being in a relationship. If I did everything that the media tells us that we should be doing I’d be in a padded cell.

    I decided a long time ago that I wouldn’t worry about the things that I can change but focus on those that I can change. I stuck with face and there is nothing I can do about that. One of the biggest and best changes I made in my life was to get a cat. I found that having that presence in the house was so relaxing and comforting that it had positive health benefits for me. My CD4 count shot up to over 1500 and that’s where its remained since Tiggy came into my life.

    In 2008, I was lucky enough to get a really wonderful job and a year later the money worries started to vanish and for the first time in many years I could even think of buying my own house. True I started working longer hours and I thrived on it. This meant Tiggy was spending a lot of time on her own so I bought another little kitten, Merlin to be her day time companion and its worked really well.

    The change of government meant that my job vanished but then so did a lot of people’s jobs. I was able to get a couple of temp jobs but now I am hunting again for something full time. Like you I am doing a part time job and while it isn’t in my specialist field at least its money coming in and that makes a big difference keeping the stress at bay.

    You’ll find its the stressful situations that cause the most bother. Its a fine edge that we stand on each day but I find that looking at the positive of each situation does help. You may not be happy with your job at the moment but its better than going without food or being able to pay a bill – trust me I have had experience of that kind of living and didn’t like it.

    I am lucky enough to have some good friends who are a great support. I have found that its not the number of people in your life its the quality of those that are in it. We all have dark moments and its a really good friend who’ll let you have an outburst and then bring you back to your senses.

    The honest truth is that its not the HIV that makes you feel like this its life but you have the power to change those things that you can change. The trick is finding out what needs to change that will help you.

    I wrote a blog as well and I find it amazingly healing just to blow off steam and to put a visible voice to my thoughts even if no one reads them.

    Best wishes,

    Chris

  9. Sam,

    You are in a unique place, experiencing problems that only you can resolve. It may seem dark and gloomy right now, but I can assure you from experience, it will get better. You have true friends who care about you, me included, and you can always lean on me, nay us, for support.

    Whatever life throws at you, remember this: the problems are only temporary, no matter how inescapable or permanent they feel. Time and a little grey matter (of which you are well endowed) will solve all your problems.

    HIV is definitely not easy to live with, as you have discovered, but it’s a hell of a lot better than beating dead. I’ve learnt to love life more now. The beauty all around me is so much more vivid and wonderful. I have no doubt at you too will experience the blessings of opened eyes, and a heart that is filled with awe and wonder, in addition to the love that already fills you.

    Ignore the ignorant. Focus on you. The puzzle will become clear as the pieces start to fall in place for you. You’re an amazing guy with so much love and friendship to offer and give. I know this from experiencing it first hand. If I can ever repay you, please don’t hesitate to ask.

    Much love

  10. Hey, try not to get too down about your long term meds. If you had diabetes or heart trouble you’d have to take meds forever too.
    Life will get better – really. As you age you’ll find there are more shades of grey (not that bloody book!) and your whole perspective changes.
    Move out. Be brave. I’m sure you can always go home if you need to.

    Hugs.
    Sharon x

  11. Hey Sam,

    I just wanted to send you a big hug. I was diagnosed 2 years ago (am 27 now) and have generally dealt with it ok but sometimes it just gets really difficult. You’re a really brave guy, but it’s hard to be strong and brave all the time.

    In terms of what happened to you the other night, I had someone I’d never met tell a very close friend of mine that I was positive at a party. When I found out (my friend asked me) I was so upset and angry. I later found out that this person had found out because someone i told had ‘warned’ an ex of mine (who i’d broken up with years before i became positive) about me. It’s a cruel and callous thing for people to do and it makes you feel horrible.

    I’m pleased to see your more recent post, following your appt, has given you a lift. My viral load is undetectable now too, am now hoping my CD4 will follow your pattern.

    You do an amazing thing with this blog, and it means a lot to so many people, i know it does to me. Apart from anything it lets me know there are other people feeling/going through the same thing as me. As a result do remember there are so many people here who would happily offer you support/ a shoulder to cry on in return. What is more, happy to share in the good times too, and i wish you many many of those!

    John x

  12. That is so awful, Sam, but I am glad that your bloods at the clinic were so good. London is a good place to live but it is very expensive.
    Take care, good luck, much love.

    Chris xx

  13. Hi Sam
    I just want to let you know that I fully understand how you feel!
    I was diagnosed hiv positive in February this year, and in the beginning I felt ok and didn’t really think it was a problem. Mid-May I started feeling that my life was turned upside down – I was in a dark hole and felt that my life was not really worth living. I hated that I am hiv positive, I felt that noone understood how I felt or that hiv may not be that big a deal physically, but mentally it changes your life.
    I have seen a psychologist through a Danish hiv-organisation, and I am starting to feel that my life again is worth living!
    When I felt really bad I accidentally saw your blog. Since then I have read it often, and you even inspired me to create my own blog. I am not yet as open as you are when it comes to the blog! I am open about my hiv with my family, friends and colleagues though!
    Well, I just wanted to say hello here from Denmark, letting you know that outside the UK someone reads your blog and is very inspired by it 🙂
    I hope you will soon feel mor cheerful again
    Lars

  14. I’m HIV-, but I’m dating a positive guy.

    Sure, the fact he’s HIV+ sucks, but I’ll be damned if I’m letting such an amazing guy get away because of my fears of a stupid piece of rogue protein.

    Stand tall, my positive friends. I’m here, I’m learning, I know I don’t get it, but I’m standing by my man, in solidarity, sitting and holding his hand in the HIV ward at the hospital as he awaits his routine blood tests.

    If anything, I’m terrified my man is going to ditch me because I’m negative and he’s afraid of infecting me.

    Life and love are complicated at the best of times.

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