Knitting Lesson no 2

On Sunday we went to Pete's Grandad's birthday get together, we got to meet Pete's new cousins too which was nice.

I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.

So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.

I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.

Pete with one of the twins

Pete's sister with the other twin

Pete's mum (also the twins aunty) and I with the twins

The twins with their mummy and aunty

I met up with some friends last night which was great as I feel like I haven't seen them for ages! We were talking about disabilities and adoption/surrogacy as one is training to be a psychologist and the other is a social worker. It was really interesting as my friend says that I am very honest about my CF and realistic but yet see the positives in my life and cope well with the problems I face. It's nice to think that's how I am or at least how people think I am. I keep doubting myself as to whether I am going to be able to cope with a baby and wondering if I am silly, but I know in my heart I wouldn't be doing it if I didn't think I could.

I had some training on MS (multiple Sclerosis) today as part of my voluntary role at Scope. It was good to learn about another unseen disability and interesting to see the similarities of the problems associated with the condition and my own. I have another knitting lesson tonight, hopefully I might be allowed to bring it home with me this time and do some on my own, haha!

25th Jan 2010 - Discussing the future

Monday 25th January 2010

I had the CT scan before Christmas, its really simple, you just lay on a bed and a circle thing goes up and down your body. It takes about 10 minutes, if that.

I Pete and saw the doctor today to discuss pregnancy. It didn't go very well. He basically said I have a low lung function and if I were his daughter he wouldn't want me to get pregnant, he said the risks are high and people have died. He suggested we look at adoption, I asked about surrogacy but he didn't know much about it. He suggested we talk about it and get back to him if we want to go ahead, he will support our decision, but his advise is it is not a good idea.

I can't really remember what else he said because obviously I was very upset and trying to concentrate on not crying rather than anything else. He told us not to feel downhearted, well that easy for him to say isn't it? He will have gone home and had tea with his family and totally have forgotten about us, left with the prospect of never having the family we both want. It's easy to dish out advice, but alot harder to deal with the advice given.

To rub salt in the wound, as we left the hospital there was a pregnant woman stood by the hospital entrance stood under a sign saying no smoking, doing exactly that. Life is seriously unfair, if I got pregnant I would never do anything that could harm my baby.

Pete and I are not sure about adoption. I've already researched it and it doesn't exactly look great for us. For a start I'm not exactly a great candidate, so we might not even get accepted. Then if you want a baby the waiting list is years long as not many baby's need adopting unless they have special needs. I don't think I could cope looking after a baby with special needs, call me selfish but I just don't think I could do it. Then there are issues such as, would our families accept an adopted child? Would we be OK with it having contact with its birth parents and siblings? Overall it's not a route I really want to go down. We want our own baby, one we can name, I want to see what our child would look like! I want to experience pregnancy and my family to be proud of me, would they be proud of me if I adopted a child?

I really don't know what to do. I think I'm kind of in denial and think everything will be OK if I get pregnant, which it could be. There are many people with my lung function that have had successful pregnancies, but then there are those that haven't.

The doctor made it quite clear he didn't think I would ever get my lung function up to 60% and also said he thinks I will need a lung transplant at some point, he suggested I could get pregnant after. That's ages away (hopefully)! And wouldn't that be swapping one set of problems for another?

Pete says he's rather have me than have a baby and lose me, he also says if I died and he was left with a baby he would not have a clue what to do. These are all 'ifs', should I give up the one thing I want because of 'ifs'?

The doctor said fitness is an important factor so I'm going to try go to the gym more to get fit and prove to Pete I won't be going anywhere if we have a baby