Walking for any length of time gets increasingly agonising from the pain in my right buttock. On the other hand, I haven’t thrown up for five days, I’ve had two extremely healthy bowel movements and even seem to have developed something of an appetite. Further good news from the hospital. My liver functions are less alarming now than they were. Made appointments for next week; family doctor for my arse-ache and clap clinic to clear anything that might be there before any possible hep c treatment. Peter called. He’s an evil genius when it comes to talking dirty. Good to laugh.

I impressed myself today. This is vomit-free day four and I’ve had a proper full day. Did my very best to only talk about my illness in minimal and light-hearted details but it still seems to slightly horrify people that I can joke about it. “It’s that dark, dry English humour,” they say and they laugh but behind their eyes they’re wondering how they would deal with it and it scares them just like it used to scare me. Anyway, was very pleased to feel genuine hunger this morning and spent €16 on lunch! It helped me deliver a couple of great lessons though I was flagging a bit by late afternoon. Seem to have spent the evening answering the phone. Good to know they’re there and they care.

I have no hesitation in saying I delivered a blinding few hours of teaching to the college teachers’ summer course. Was so grateful that I had prepared it weeks ago before I started getting sick. I think I banged on a bit too much about being sick and that’s something I’ve got to watch in the future. Clients are always concerned when you get sick but they don’t want an ongoing descriptive account of what’s going on. Mind you, I was in considerable pain on and off. The nurse yesterday said that the crippling pain in the upper part of my right buttock is nothing to do with the hep C, whereas the UK Hepatitis C Trust website (http://www.hepctrust.org.uk/) says it can cause all kinds of muscle and joint pains. Pain relievers don’t seem to touch it. Anyway, good teaching, good learning, lots of laughter and some very satisfied and complimentary students. Was pleased that my 4-6 client cancelled and I could go home and begin to feel like a normal person who’d had a normal day. Even cooked some rice and salmon though my appetite is still zero. Managed to get through some of it but must eat tomorrow both for me and to avoid waste.

A slightly more emotional day than anticipated. I went off for my first appointment with the nurse/counsellor at the hospital. She and her colleague whom I have met before will be guiding me through the hepatitis treatment. I don’t think I was prepared for the possibility that it could go on for a year and I was surprised by the depth of my emotional response.  “I’m not,” said the nurse, sagely from behind her desk as she waited patiently for me to stop crying. When I got home I decided it was time to contact the five men I had had sex with since April (my last negative result.) My heart was slightly in my mouth and Peter helped me with the wording but I couldn’t have predicted the responses, all of which came quickly. Most had just had a test and were OK. But one. One complete arsehole blithely wrote, “Oh yes, I’ve got hepatitis c. I forgot to tell you.” I’m reminded of Torch Song Trilogy. “Did you say ‘oops’, Ed?” Odd thing is though that he says he took no medication and now, a month later, he’s OK. He says.

My first work day knowingly infected with hep c. It felt like a slightly different world with new things to work out, such as what to answer concerned clients who ask understandable questions about what I’ve got and if I’m going to be ill for a long time. But anyway, it was just the one lessons and it went quite well. Came home and even felt up to doing some admin before Peter dropped by. I’d asked him to look out for natural oat cookies or, better yet, flapjack, but of course this is Peter we’re talking about so he turned up with a backpack bulging and straining at the seams with half the stock of the local health food shop; grains and juices and stocks and teas and goodness knows what else. And he made an extremely generous financial offer. “It’s been proven,” he instructed as we washed my dishes, “That anyone who can answer ‘Yes’ to the question, “Will you be financially secure during your illness?” is going to recover faster and more completely than otherwise.” Apparently, I give him and Michael a lot but I’m damned if I know how it balances out with what they give me. As soon as Peter had left, Michael called to make sure I find out about any sickness benefits that might be my due.

Courtesy: tribune.com.pk

When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.

initiatives

Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.

Was yanked into wakefulness at 6am by the overwhelming need to explode from every orifice; my main objective to just get somewhere tiled. Made it in time but indecision about which end to point down the toilet first prolonged the agony and increased the pressure. Thankfully my flush re-fills quickly so after about thirty minutes of alternate expulsions and flushings I was left naked, trembling and grey in the middle of a splattered bathroom floor with the sweat running down my entire body in rivers. Recovered with tea  ( I have now eschewed the good ol’ British cuppa in favour of caffeine-free, milk-free herb and spice concoctions with honey) and a joint and went back to bed with a towel to place under my wet head. I’m discovering that longer hair is not such a good idea when it comes to night sweats. The universe is sending me phone calls. Peoples’ reactions are being predictably unpredictable but at least I’m not as shocked by the apparent uncharacteristic behaviours as I was when I first became hiv+. F even recognised his own crassness and called back to apologise. No need. He’s a beautiful man. My bath at Michael and Peter’s was bliss. (I only have a shower; a very nice shower but there’s nothing like a soak in the bath when you are sick.) The time I spent with them also beautiful. They’re unique and quite wonderful.

I know what it’s like to wake up knowing you have hepatitis c and to get up and go shopping for food through the perfect sunshine that curiously fails to warm the skin, to buy soft fruit, herbal tea and soup because that’s all I can eat because I have hepatitis c. It’s Day 1. How many Day1s are there in a life? What happens next? I re-adjust from today. If I feel like crap at least I know why. If I feel tired and I’m able to rest then that’s what I should allow myself to do. Peter and Michael called. Their party sounded lovely but I’m still pleased I stayed home. They were sweet to say how much they missed me though. Chip also called. Sweet thing really wants to say or do something helpful but there’s really nothing anyone else can do, at least for the moment. L also called. “You sound down. Did I wake you? Are you alright?” she asked. “Not really,” I replied, “I’ve got hepatitis c.” “Oh I’ve heard of that,” she said, “Anyway, I’ve called to whinge. I’m fed up with everything. My lack of a sex life, my work, I hate my apartment and everything. You always cheer me up” “Sorry,” I said, trying to be brave and hang to one of the first instructions I got. Look After Yourself. “ I just don’t think I’ve got it in me this evening,” I explained, hoping to change the course of the conversation. “Oh, alright,” she said. “I’ll go and find someone else. Get well soon.” Click. It wasn’t quite that brutal. She just didn’t know what to say and neither did I.

Well, that was a Friday the thirteenth for the annals. Long story short; I have hepatitis C. The irony is that this morning was the second consecutive day I hadn’t started by throwing up and I went off to teach my morning lesson through perfect sunshine feeling quite upbeat. The lesson even went quite well. Oddly, though I can’t concentrate on keeping up with the admin while I CAN concentrate on scanning favourite pictures from books to go in my new electronic picture frame. The doctor called at 2:30pm and thankfully did the Dutch thing and went straight to the heart of the matter. I let D and C know by text, as requested, though text messaging always seems so cold at times like this. And, of course, the wonderful Peter and Michael both called and bore my tears and self-recriminations with the same strength of character and love of life that I so admire in them. Their generosity of spirit leaves me in awe and wondering what it is I’ve got that they obviously see so powerfully. I can’t even have a thought or a feeling that they don’t know about. So, anyway, off to the nurse/counsellor on Tuesday. There’s a 10% chance my body will clear it by itself. We’re hopeful because the fact that I feel so crappy means my system, hiv n’ all, is fighting it. I’m opening up to the universe.