A year since ITU....

These past few months has been really difficult which I mentioned in another post. I have been trying to not concentrate on the nightmare I went through during these months last year. Reading all my status updates on Facebook has been upsetting but at the same time I have been extremely grateful for being where I am today.

This time last year, I was being taken down to ITU after collapsing suddenly. It was such a confusing experience. I came out of the bathroom feeling really uneasy and so restless. I felt sick for the millionth time again and usually when I was really sick and uneasy at home, I'd pour a jug of cold water on my head to calm myself down. I remember feeling very panicked and the junior doctor as just sitting in the chair asking me questions. It was my first morning in QE hospital after being transferred from Shrewsbury where I stayed for 8 days! The junior doctor kept asking me how I was feeling and was I in any pain and her questions kept making me even more anxious. I stood up to tell her to leave the room and I suddenly fell onto the bed. Strangely, I wasn't actually totally unconscious. I could hear the rush of feet in the background and the nurses stripping me off and putting on the hospital gown on me and attaching a million things onto my body. I could hear so many voices mostly belonging to a few doctors and so many nurses.

I remember this doctor, she kept saying 'poor young girl' and then the other doctor's corrected her to say I was 34 years old with two children. She was so shocked because she thought I was around 17/18! A bit of humour here. She was lovely and kept reassuring the other doctors that they wouldn't lose me, I'll be OK. I was very close to ending up in a coma. I kept wanting to sleep and these lovely nurses kept making me speak and making me frustrated so I wouldn't sleep!

My eldest nephew, I remember he was one of the first people coming in to see me so early in the morning. He was standing next to me crying. Then came in my mum and aunty, uncle and grandmother. This was then followed by my siblings and dad and and husband. It was really hard seeing everyone so upset. They had received a call early morning when I had collapsed. So you can imagine how scared they were.

A year on, and these memories are still very raw. They don't stop me from living my life but of course, it is a natural process to remember where you were this time a year ago. I woke up today feeling very tearful and holding my little daughter. She had come to visit me in ITU but I actually didn't let her see me. She would have felt really anxious and scared so I decided against it.

I was asked by someone, do I feel like me again after nearly a year? My answer was, no. Something so huge changes a person forever. No, I'm not like before. I go through really hard and rough days sometimes and all I want to do is feel rested but that isn't easy with two little ones. I sometimes forget to take my medication which is life depending so I've had to put in alarms on my phone to make sure I do not miss the doses. Some nights I hardly sleep because some of the medications has caused insomnia. I still experience pain on my surgical site and I feel a lot of pressure and tingly sensation there which means I have to sleep in certain positions. I suffer from so much pain on different parts of my joints. At least I can walk now but a few months ago I was finding it hard as my ankle would be in excrutiating pain.

But there are also a lot of positive things in my life. I don't let all that stop me from trying to live my life. I really hate it when people have say 'be grateful', 'move on' or 'someone's worse off than you'. Yeah maybe, but when you're going through a hard time or have been through it, these remarks are very hurtful. Have you been through health problems that nearly killed you? Have you had any form of transplant?

To feel sad and upset about your journey, doesn't mean we are ungrateful. Life isn't about feeling positive all day long. You're allowed to feel sad but then try to bring yourself out of it.

I love my life and I am so grateful and happy to be here today with my children, my amazing family members, and my amazing friends! They have really pulled me out of this nightmare. Lastly, my donor and their family.

What do I say about this family? They gave me life when it was being taken away. I haven't even got in touch with them yet because I do not know how to put it in words yet but I'm definitely planning to do this really soon. They deserve to see what difference their decision has made.

This brings me to the radio interview that I did on Monday! I was invited to tell my story although most of it was cut off to help raise awareness. Before falling ill, I really had no clue about organ donation or how that even made such a difference in someone's life.

I'd like everyone that reads this blog to realise how this affected me and had a donor not been found on time, then the consequences would have been different. I probably wouldn't be here typing up this post. So please, read about it, educate yourself and sign it. Your organs can save a life and a family from being devastated from such a huge loss. If someone else has the chance to live because of you, isn't that amazing? Would you take an organ if your life depended on it? Of course you would. As humans, we are desperate to live when we are so close to dying. So if you'd take it, you should also give it!

Anyway, I'll end this here as motherly duties call me! I have a lovely little toddler to clean up and do some cooking!

Enjoy your weekend :)

A year after

Exactly a year before

Give up or give in....

Well it has been quite a day since I opened my eyes this morning. It started with my daughter who is 8 years old and suffers from a rare disease called Costello Syndrome not wanting to go swimming. This syndrome affects the quality of her life pretty hugely and has since she was born. She was on tube feeds for many many years and it took us over a year to finally wean her off from it! Anyway, she's a wonderful little child and honestly is the most polite and well mannered little lady. She was never a rule breaker but maybe because she broke the norms when she was a tiny little one. I mean, no parent anticipates they'll be feeding their baby via a tube and on special paediatric feeds to up her calories! Anyhow, she was a well behaved child.

Of course she usually loves swimming but from what I know, it isn't the fun splashy lessons she used to have and of course in order to teach her, they have got her doing lots of exercises which Aleena isn't liking at the moment. It took me a long hour to pacify her and she was eventually happy to go to school all happy and ready to get into the pool.

Then my lovely nearly 3 year old son decided today was the day he will cry until I gave up or he gave in. Since 8.30am he has been crying to go and play outside in the garden when it has been raining profusely. I haven't been well and so I wasn't planning to live the moment and go in the garden drenching myself in rain and definitely not so early in the morning. My son usually gives in after half an hour but today this tantrum lasted the whole morning into the afternoon. I had bought him a pair of sandals/shoes to wear outside in the garden when playing and so since yesterday he has been walking in them shoes inside and really wanted to wear them outside.

I sometimes physically do not have the energy to discipline him the way I probably would have before falling ill. Firstly, I find it very hard to be firm with him and carry a nearly 3 year old to a naughty corner which he really doesn't understand or if he does, he pretends he doesn't. I just let him cry and hope that he will soon get himself together which he does eventually. However nowadays he has grown quite a stubborn personality and at times I find myself giving into his demands because I'm tired. Sometimes managing a breakfast without a million hurdles is impossible! I mean for any mother it is impossible anyway and throw into that a mother who has to deal with a child with special needs, a terrible two toddler and then a mother who has her good days with health and then the bad days. Of course, my husband helps out a lot and he is finding our little rebel of a toddler difficult these days. We are either hiding in the kitchen trying to get a hot cup of coffee with some snacks or we are dealing with this little terror dangling on us or pulling and pushing us. Breakfast is a must for me though as I have medications to take early in the morning without fail and then in the evening. So I have to stick to a good routine and make sure to take my anti rejection medications on time and same time everyday.

Of course he doesn't always behave like that but today was one of those days we had where everything was upsetting him. He was a happy bunny eventually when it got sunny and he was was able to wear his 'pider man' sandals outside!

On the other hand my daughter came back from school asking me 'can I go swimming tomorrow?'. I mean it took me an hour to make her understand how important it was she took part in her lessons and stop her from crying only for her to want to go swimming again tomorrow. What do I say? I have two entertaining souls in my life who make sure that I am never bored! Ha!

So this was my day! Full of humorous moments and me trying to get to my medication on time. It is hard being a mother again after a transplant. Having to regain the physical stamina and mental capacity to help two little people develop and reach their full abilities. I hope I am doing a good job and I hope my children know that I have my struggles but everyday I am trying to be the mother I once was.

Here's hoping to a peaceful day tomorrow. I am planning to start toilet training my son in the next week or so, so I'll be writing up posts on my experience with this little man.

Another little news. I will be coming on BBC Radio 4 on Monday 18th April between 10-11am in the women's hour to talk about my transplant. So tune in and listen out for me!

In his spiderman shoes!