Ups and downs

It’s no secret that off and on I have really struggled in these past couple of months, past year maybe, with this whole IVF process. Endless waiting for something that never seems to happen, the ease and speed with which ‘other people’ get pregnant, other people’s insensitivities even when they know the situation, the complete inability to escape other people’s pregnancies, and inability to escape the reasons behind our need for IVF, that is that I or we (Mr F and I) have the gene for HD and there is currently no cure. It has been really hard and upsetting to deal with.

And there were times when Mr F and I were simply not communicating at all well with each other. I mistook his silence when I got upset for a lack of understanding of what I was going through. I didn’t recognise that he was feeling the same as me, and he didn’t voice his feelings either.

But I think a couple of months ago, I did turn a corner. A corner of acceptance almost, where around the other side everything made a bit more sense and just became a bit easier to deal with. It was like one day I woke up, and was completely fed up with myself. Fed up that I couldn’t be happy for other people, and fed up with being jealous, and just sick and tired of hearing myself whinge to other people or when that had become ridiculous, in my head. And it was almost like I decided that enough was enough. Life is good, whether we are waiting for IVF or not. Other people are other people and sod them all because their life is not ours. Yes, we have to wait but what is waiting compared with what might happen in the future. A child free from all of this stress and pressure, a child free from HD. OK, so they might have to deal with me when I get ill but they won’t have it, and their children won’t have it and the pain from HD (emotional and physical) will stop. What a gift that is.

I think I got hung up on the waiting, and hung up over on other people. And somehow, I just told myself to stop and it has stopped. OK, I’m not saying that the jealousy has completely 100% gone but it is stuffed in a box, locked away somewhere inside me and I going to try my hardest not to let it out. I am strong, I am not my mother, I will not let this beat me.

I think a few things led to this – a couple of emails from you guys shook me out of it but also my husband. Before the corner-turning moment, the barrier between us crumbled. I crumbled you see. I had always just thought he didn’t understand or know what to say to me and that was why he wasn’t talking but then I thought what if he is feeling the same? Him not saying anything could mean anything, or indeed nothing. So I asked him, in the midst of my crumble, what his silence meant. And his answer was what I should have known all along, he did feel the same, just the same. And I guess once we picked ourselves back up, the relief flooded through me that I was not going mad, that it was normal to feel what we were feeling, and that he felt that way too. Just the same. And we knew that we could get through this.

And I think it took a few more days, maybe a week, maybe a little more. And my head cleared, and the jealousy fell away and the realisation of life, our life, came flooding back. And things started to change.

Suffice to say, I have stopped with my timescale of events. I’m trying to reduce the importance of time in this whole situation. For those of you who want to know, it’s now been pretty much a year and a half since we first requested our appointment to get the referral and we’re not quite there yet but we’re close. But I am going to stop counting now.

So I am still waiting, we are still waiting for the next stage. But we are waiting contentedly. I am once more trying to finish work on time, trying to reduce unnecessary stress. And I have signed myself up for reflexology, and we are going to go away for a little holiday before everything does indeed kick off. And I am going to do a fun run or two as well, whilst its still warm and again before things start happening. And I’m cutting right down on alcohol as well. Fingers crossed, I am going to have to stop altogether soon anyway.

So I think things are looking up.

I'm going into hibernation

So I started my period last week, and my wonderful husband phoned up to let them know so they could arrange the treatment schedule. It says in the booklet that a few days after making this phone call, you get your treatment schedule.

Eight days later, we've got the beginnings of our treatment schedule. The bad news is that it's not going to be until the back end of the summer. We're both gutted.

I'm at work, trying to keep my head up, trying to be OK, trying to convince myself that another four months maybe isn't too bad. All I can hear is the girl across the way talking about whether she's going to have gas and air or an epidural. She's going to buy a TENs machine too, so that's nice.

At the moment, hibernation seems like the most sensible solution.

So my top tip for all of you people out there, and I want you to pay attention to this...

If you're thinking about PGD or any other type of IVF, get yourself in the process as soon as you can. Don't wait until you are actually ready to have kids to put your name down. You'll never be ready, I'm not ready and I doubt the pregnant girl at work is either. If we had known and truly understood how long all of this would take and how hard the wait would be, we would have asked for the referral the second they gave us the HD test results. We wouldn't have wasted a moment.

Be strong

I can't stop thinking about my last post. I used to think of myself as a strong person, someone who could cope with pretty much anything. That I wouldn't have been given HD if I couldn't cope with it, and I knew that I could, that it would be fine somehow. And the people around me, they thought I was strong too.

But I look at myself today and I wonder was I fooling myself? Maybe I'm not that strong afterall, maybe I just can't cope. Maybe this is all just too hard to deal with. They said it would be and who was I to think that it would all be OK somehow?

And then I have to remind myself that this isn't all in isolation. HD attempts to cloud over so many aspects of my life whether it's the relationship with my mother, my childhood memories, my hopes for the future, the decisions I/we make... It's all affected in some way. You can never escape it. With each appointment for the IVF with the counsellor and with the doctor, they have asked for a family tree, asked about my relationship with my mother. And you know it's there in their notes, you can see the family tree but you have to go through it again. But it makes you burst into tears and you can't control it because it's all so unfair. And whilst you accept that they may need to run through these things, all you want is to move on from that. To talk about the future and not get bogged down in the very things you are trying to escape.

Maybe I'm just so very tired of being the strong one. Maybe the culmination of HD coming at me from every angle is all just too much. Maybe I'm not so weak for cracking up over the constant reminder that we are not pregnant, that we are still waiting for x, y or z because it is in fact a constant reminder of the entire battle. A constant reminder that I have the gene for HD and that life will never be normal. How could anyone not crack?

Waiting

I find this whole process unbearably frustrating. I am not the most patient of people, I admit that. And the constant waiting and wondering sometimes feels like it's driving me insane. For the past year and a good bit, we've been forever waiting. Waiting for a letter, for an appointment, for a phone call, for test results, for the funding, for my period... Everyday I am hoping for one particular waiting process to come to an end but it only means we are on to the next wait. I come home, constantly hoping for a letter on the mat, even if we're not due one. I jump with anticipation when the phone rings. And then my heart sinks when it’s not them.

I think the whole process is taking it’s toll and there's a long way still to go.

Everyone says it’ll be your turn soon, not long now, the time will fly… But it has been a long time and when we first asked “How long will it take?” the answer of “a few weeks for a referral” did not really prepare me for this.

Before all I was thinking was of the difficulties regarding the injections, the potential for side effects of those, maybe some mood swings, the difficulties of the actual process of stimulating the eggs, extracting etc. That was kind of what I focused on and I don’t think I really anticipated quite how difficult I would find the whole waiting part.

Sometimes I feel like I’m cracking up. Small babies, pregnant people, happy famillies they’re all driving me demented. I get so jealous and my insides hurt so much like my chest is contracting inwards and trying to explode all at once. It wouldn’t be so bad but I swear all pregnant people talk about is being pregnant, and all people around them ask about is being pregnant. And quite rightly, they are so happy about it, so they talk nice and loudly so everyone can hear. But sometimes, you just wish they would talk about something else, and be sensitive towards those who might be silently struggling towards the same goal, sitting there in the same room, trying their hardest not to burst into tears and run screaming from the room. Because there is probably more people than me who are struggling.

And in a way, I have been patient. It has been two and a half years almost since the test results. Two and a half years of moving towards something that feels like it will never happen. One and a good bit of a year actually moving through the process.

And I know that in another way, we are actually quite lucky. I am still relatively young and we have a good chance of this working. We have not had to face agonising months or years of trying different drugs to help us become pregnant before even moving forward to try IVF. We know what is wrong and in a way we get to jump the queue. So in all likeliness my year and a good bit pales into insignificance next to other people. And we get funding, for the first go at least, which is obviously completely different than for people living outside the UK.

And then people tell you, who’ve never had any such problems that they know what you’re going through, that they’re there right with you, experiencing the whole process too. And you know they’re insane. You try and take the incredulous look off your face and look appreciative because they don’t really know any better and they are trying their hardest to understand. Or someone else says a comment that rips your heart out, someone you thought understood, a comment you were unprepared for. And all you can do is focus on the floor, try to stop the whole world from closing in and pray they'll go home soon.

And you just have to go on waiting.

Lovely, wonderful daffodils.

Daffodils! I always knew they were special. Click here for full story.

Tests tests tests

Just had our second appointment in London. It was a weird day, part good, part hard, part relief.

We arrived a little late as we got a bit lost in the big city (even though we've been there before - oops!) so we were a little stressed. And then we had a mountain of forms to sign. I got a little bit confused in parts - there was just so many about the procedure and then about what happens to the embryos who are not put back in, and then about whether if one of us were to die, we'd want the other one to have any frozen embryos. We hadn't thought it to be honest and kind of looked at each other confused.

And loads of tests. Some were what we expected and some were not... Mark gave his sample in the little room. All good I think. They don't give you the results and they only need a very small number of sperm (they do it by ICSI, where they just use one sperm to fertilise the egg and don't have any spare ones floating about in case they get tested for HD accidentally). And we had some blood tests for hepatitis and hiv (for them to be able to store the frozen embryos). And whilst I was there, I happened to be on my period, so they tested my hormones as well. That was a total bonus because we'd had a letter saying it needed to be on a specific day of my period and I was having a right stress about making sure I was able to get an appointment with my doctor on the right day without disrupting stuff at work too much. It was on the wrong day of my period and was a pill period rather than a normal period (which the letter had requested) but that's it done apparently.

And then the final test was an ultrasound. I thought it was going to be an ultrasound like on the tv with the jelly and stuff on your tummy. But he put it up inside me literally to have a look at my ovaries. I was completely horrified - he wanted to do what? Whilst I was having my period? Ew! No! Stay away! I am sure I will be examined plenty of times in the whole IVF/pregnancy thing but I just wasn't expecting it and I'm just not good with anyone going near me at that time of the month. But then I' m glad I didn't know because either I would have really wanted to skip my period (in which case, they wouldn't have been able to take the blood for the hormone tests and delayed everything) or I would have been fretting like crazy beforehand and would have got myself in a right state. I guess on the positive side, at least next time when it happens, it won't be any worse!

So the good news is that's it, we've done all the tests, we've signed all the forms. We're pretty much ready to go. Next period and we're off...

Scarey!

Yr 1:
Wk 11 - hospital appointment in London. Tests and consent forms.

Trying for a bump

In a way, we've been trying for a bump for a year now - watching out for the post, hoping for the phone call, trying to imagine what it will be like to be parents, thinking about names, wishing it was us when I see other people...

Other people is sometimes where it can be the hardest. Pregnancy is such a public thing in a way whether the pregnant person wants it to be or not. Everyone knows, everyone touches the bump, everyone talks about the bump, everyone wants to know how they're doing, what their plans are, everyone has an opinion... Sometimes when you've been trying for a bump for a year, seeing other pregnant people can be really hard. It's not that you're not excited too, it's just that it's so difficult to not think about yourself and wish you were them. They don't mean to be a little bit pregnant smug just as I don't mean to be a little bit not pregnant miserable.

What a whinger!

This is the difficult bit, I knew that when we chose this route. Knew it could be the slower way to start a family, read about the difficulties of IVF, knew we would be completely dependent on the health service. But I didn't realise the jealousy of normal people getting pregnant in the normal way would eat at me inside.

I don't want to be jealous. I know the logical and heartfelt reasons why we're having IVF and I know they're the right choices. But sometimes when you see pregnant people hugging their bump and being so happily pregnant smug, you just wish with all your heart things could be different even though you know they can't.

Yay blood tests all done!

A fitting end to the end of the first year...

TIMESCALE

Year 0:
Week 0: requested appointment with our local genetic counsellor to talk about PGD and to get the referral.
Wk 14: Appointment with counsellor, and referral passed on. The waiting list is four weeks long.
Wk 18: Letter received from London with appropriate forms to be filled in. Our London appointment is in the next 8 weeks. Forms completed and sent back.
Wk 20: Appointment letter received.
Wk 22: Appointment in London.
Wk 23: Update letter arrives with forms to be completed to confirm that we want to move forward. Posted back forms.
Wk38: WE GOT THE FUNDING! : )
Wk40: We got the letter confirming our funding and asking for Mr F and my dad to go for blood tests with their GPs (mine and mum's DNA make-up to be collected from our original HD test results).
Wk42: Blood taken and sent to London for both Dad and Mr F.
Wk45: I chase up whether all the bloods have been received.
Wk49: Bloods all sorted.

Stupid people

An article published on the BBC today says:

"The body will constantly tend to try to bring you back to whatever your normal body weight is," he [Dr Rudy Leibel of Columbia University] says.

But he does not think this is the full story. There are other issues that influence a person's weight.

"Fifty per cent is down to genes and the rest is probably down to environment. If you get the gene for Huntington's you have the disease 100% of the time. That's certainly not the case with obesity."

Maybe he's an expert on obesity, I don't know enough to judge but you'd think he'd get his facts straight before talking about something he blatantly knows nothing about. What a bozo!

If you get the gene for Huntington's, you have the gene 100% of the time, not the disease. So ignorant!

Dr Leibel, I think you owe us an apology...