HIV, study and me..(Oh and dodgy legs).

Jun

08

 

I’ve always believed that It’s best to start a relationship by telling the truth, by being open and honest about who we are. My name is Neil, and I’m a Gay man who was diagnosed with HIV on Wednesday the 21stof March 2012 at 14.30pm. I remember that date and time so well, as it was the date when everything changed for me. 

 If you are expecting me to say that on that date my world fell to pieces, and I failed to cope with the new situation that I unexpectedly found myself in then I’m sorry.. It didn’t play out that way.

 The journey from that date to this has been quite fraught with twists and turns, some that you would never expect, the story of my journey with HIV is not simple, and it’s certainly not smooth sailing as the leaflets imply that it is in this era of medication and management of the condition. But I’ll break all that into smaller parts, bite sized chunks that might just be manageable and easily digested. The story of getting here now is a rollercoaster of pills thrills and bellyaches, fight-songs and torch-songs, and boring, boring days.

  I’ve been a postgrad student at Sussex for nearly a year now, I’ve been studying Social and Political thought (part time). But I thought that I would share my experiences of HIV, Disability and my student journey online. This last year has not been the easiest for me due to ongoing medical issues, complications to my existing conditions, and problems with emerging disabilities. But I want to primarily write this blog to help show illness and disability no matter how debilitating should not bar you from your studies, and that with a little perseverance, motivation and determination you can continue and succeed, no matter how many difficulties life throws at you.

 In December 2017 I was diagnosed with Avascular necrosis, (also called osteonecrosis) this is the death of bone tissue on the Femur due to a lack of blood supply. It leads to tiny fractures and the death of the bone. Avascular necrosis is associated with HIVand its long-term medications, Sickle cell anaemia, Radiation therapy and the use of steroids. It is also suggested that Trauma and lifestylechoices such as excessive alcohol intake, smoking and a high cholesterol diet can also be contributing factors.

 As a result of diagnosis, it was decided that that I needed double hip replacement. The first of these hip replacements took place on the 5thMarch 2018. I entered hospital at 9am on the Monday, and was discharged on Wednesday afternoon 2½days later! I found the whole experience less painful than I thought, (or feared that it might have been).

 My second replacement is now booked in for the 25thof June 2018, And I am really looking forward to having the second hip replaced, knowing that it will deal with the excessive pain that I have been suffering.  

 As you may have realised (without thinking too much about it) the campus at Sussex is not designed for people who are unable to walk, granted there are (in certain places) a few slopes and easier accesses for wheelchair users, but if you are on crutches.. Then you suddenly find the campus almost inaccessible. Journeys are long winded, access to certain rooms such as the library entail a long walk around buildings to discreet side doors, back exits which cause pain and suffering, and pure agony, which leads to not wanting to attend seminars or events.

 When faced with a choice of a huge detour just to get to buildings that are essential to study, then disability becomes a major issue. This all on the year which is supposed to be all about ‘Access to study’. It’s  true that you never really know or notice about things unless you are in the position of experience, but I’ll challenge any member of the University management, Dean’s, Chancellors, Tutors or staff of the student support to spend a day in crutches and attempt to get about the campus for just one day..  I know this challenge won’t be taken up, I’ll just be given a list of email addresses to write to, and my correspondence will be lost amongst the piles of important suggestions and great observations. 

 So I’ll just limp on, but if you see me, please hold that door open! Thank you.

 

 

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