Friday, 8 April 2011

Im not home

Most people will be expecting this blog to be from home, but I haven’t made it home yet. I had a home visit Thursdays with the OT's, Physio and nurse, where I was taken home by ambulance and we went through my house and what they could do for now to make life easier until we are moved.

Whilst at the home visit the OT started to go on about a property available in Sidmouth. The thought of moving to Sidmouth originally scared me alot and I said out right No, I’d be away from my family, granted only 15minutes down the road but its a lot further than 5seconds, having my Mum and Nan on my door step feels quit important to me and I don't know if living in Sidmouth they would be able to see me as often. Having given up so much in the last few months and having so much of my independence taken away from me but in the same time in a way to keep it, anymore changes I have to make feel that more scary. I am and have been so isolated at home anyway and I realise that when I go home this time, I am going to be that much more isolated and reliant on people. I will be eventually having careers coming in to help with physio, showering, cleaning, food preparation, when it is all eventually sorted and I don't know if such a big move will just isolate me more.

The property is a bungalow, fully adapted for disabled access and brand new, it is a dream property, it will help my health so much, but I’m so scared to make such a big move. I’m still mulling the thoughts over in my head and I am coming round to the idea after a brief trip to Sidmouth to have a nosey at it from the outside but everyone was being so push about it, I was at my point of breaking, the stress levels had reached maximum and it felt like I had everyone nagging and to be honest they were, it was nagging out of concern but nagging never the less and I lost it for a second swore and told them that even though I can only walk a few meters I was close to walking out, I don’t know how and I don’t think it would have been possible but I verbalised the thought, in an attempt to show my distress and anger at the continual nag assault.

Like I said I am coming round to the idea now and it could really work, but sometimes people just have no idea, there not the ones who are having to re adjust there whole lives and I can't just do that all in one second, I have to come round to the whole thing in my idea and my choices, what little choices I have left slowly and well thought out.

I have to say Stuart through the whole of this has been amazing, I know all these changes have got to freak him out as well but he’s doing it all so well. Telling me that the house is my choice, if its going to help me lets do it, but if I’m going to feel isolated and lonely then no. Its hard though, when all the decisions are up to you, I’m not just deciding my fate, but Stus as well. What if its the wrong thing? what then?

I still haven’t explained why I’m still in hospital, its more a technicality really, No home IVs were ordered in time, they suggested I do home IVs the old fashioned way, I don't think my doctor thought this through when he suggested it, I’m struggling to shower, to feed myself, to get up and down the stairs, but apparently waking at 6 then 8 and drawing up IVs from scratch would be possible. Hummm possibly not. Then I have IVs at 2pm 8pm and 10pm that means those many trips up and down the stairs as well as for food and that’s if I can stay awake in those times to concentrate enough on doing IVs along with coping with the ridiculous amount of physio I have to do and the temperatures I’m still getting. So I’m staying till Monday.

Today my mum came to see me, we decided to escape the hospital, any trip where we escape is done with, wheel chair, blankets (to sit on for comfort or to wrap me up when I get a temp as I go really cold) oxygen and enough of it. It feels a little bit like a military mission. We went down to the range and Matalan. The range, the lift was broken so we couldn’t venture upstairs and that really annoyed me. In Matalan Mum decided to buy me some new pj's, I love getting new pj's something about it makes me much happier then when I buy new clothes, probably as I spend so much time in them, I know I will get the use and I like the feel of nice new pj's. Unfortunately for me I have to try everything on, I’m long in the body and leg and often end up with tops only reaching my belly button or ankle swingers. I was spiking a temp at this point and when ever I have a temp, I am extremely breathless, so me and mum in the disabled changing room, with a breathless me trying to put on the pj's, managed extremely well surprisingly but that was the end of the trip really, all my spoons were gone. Back to the hosp, we went to paracetamol up and get into my new pj's Yay. My temp turned out to be 38.1 heart rate 147, sats were ok but this was because id accidentally knocked my 02 up to 4 litres instead 2.

After the paracetamol kicked in me and mum went and sun bathed and mulled over my life and situation, We talked about how things are and how quickly we’ve gotten to this point, we saw it coming, but it still seems like its here quicker then we ever thought. A topic of conversation at the moment, is death, funerals, how people are to cope with out me. How bizarre that at the same time I’m planning my wedding, I’m also planning my funeral. Now I’m not saying I’m planning on going anywhere, but anyone in my position has to think of these things and Iv started jotting down things because I know I may not get that transplant in time a realisation that has really become aware to me with what I like to refer to as the recent decline.

Well Iv possibly bored you all to death with a super long blog now, I hope you've all managed to stay with me till the end. Please don't forget to leave me a comment.


  1. You never bore with your posts Kirstie!! Even today on one of my crappiest days ever (nowhere near as a crappy as yours admittedly and I'll explain when I see you!!) your blog makes me stop and think hey, snap out of it and smile. If Kirstie can, then so can I! Your determination, spirit and attitude to everything CF is throwing at you right now is truly amazing and inspiring. You have the support of a fab fella and your lovely family and friends and I think you're just ace!!

  2. Hey tracy,

    Its good to know im not borning everyone, I do wonder sometimes. Thanks hun and I hope whatevers going on is sorted soon, will chat when i see you xxx

  3. Hey hey

    Ok firstly I live 20 minutes away from my mum and did so the whole time I was on the transplant list, when I needed her she just hopped into her car and was with me pronto. I'm not saying you should get the house but just letting you know it's managable.

    Secondly I know you are finding it hard to walk and stuff but I really urge you to use your leg muscles as much as possible, you may think it's nothing now but it's the main thing that will cause you problems post transplant!!!

    V xx

  4. The house sounds like it would help, but it has to be your choice and only you will know when it is time to reach that point. If you fear being far away, have you tried putting the route from say your mums to the new bungalow in and seeing the exact time it would take? You could also work out taxis prices using that. At the moment, it would be a lot of work to get from one place to the other and when living close, you often want to walk it. But maybe at some point, if you were in the bungalow, you would perhaps be able to take a taxis from your door to your families, with minimal walking, though I dont know your situation with oxygen.

  5. Whatever decision you make will be the right on for you at the time. Wow, the planning your wedding and funeral comment really struck me. I hope you get your new lungs, have an amazing funeral and don't have to think about planning your funeral again for 60 more years.

    Sending lots of love for the US!

  6. Just saw you on Russell Howard on the iPlayer catch up service (didn't know it was on a few weeks ago)!

    Wish you the best of luck and hope you get a transplant soon.

    I've been listed as an organ donor since I was 21 (26 now) after watching a shedload of medical TV shows and felt it was the least I could do.

    Good luck Kirstie; I'll be following you!

  7. Kristie I have to tell you I have never been interested in reading someone elses blog-I dont even use twitter! But since seeing you on Good News I have read every one of yours! Its 630 in the morning and Im getting ready to go to work but have read your newest posts and now have to splash cold water on my face so I dont look like Ive been crying! No one should ever have to go thru what you are enduring, but you seem to take it in stride, so yes, you are inspirational! Gotta run, but Im thinkin of you and tellin all my friends about ya! It will happen!!!!!

  8. Awww Kirstie, I'm sorry that you didn't make it home yesterday :(
    Stuart sounds like an absolute darling!
    I hope the weekend passes by quickly and you make it home on Monday!!
    Much love xxxx

  9. Hi Kirstie,
    Having been confined to living down stairs (luckily my bathroom is down stairs) I know I have alot more independance. I don't think people realise how much energy it takes to get up the stairs. I have bar stools in each room so that I can have a sit down whenever needed. The one in the kitchen is a goodsend as I now can make myself a sandwich or put something in the microwave even on my most breathless day. I hope you can work out what is best for you. Sending you lots of love.

  10. I never get bored reading your blog Kirstie. I think regarding the bungalow, you, Stu and your family should sit down and weigh up the pro's and cons. For example, would it be better to be able to get in a taxi to see your mum and have an easier (if not a lot, maybe a little) day to day life... or stick with how things are and be a walk away from your mum. You need to weigh it all up and do what is better for YOU, its obvious Stu and your family support you no matter what so do what will make you feel the best. Remember you need to keep certain aspects of yourself in good shape ready for your transplant, you don't want to be way too ill and miss out!

    Good Luck with everything Kirstie, stay strong and do whats best for you!

    Andrea xx

  11. oh and enjoy those new PJs! hehe!

  12. Hi its Rach, I am so sorry that you did not get home on Friday. Can I just say that you really look lovely in your photos and Stuart looks a right hunk!! you are so lucky to have a man who is caring and understanding.
    The bungalow sounds like a good idea but only you will know if you can make the move, it has to be your choice at the end of the day. I can understand you feeling scared about moving away from family and friends as they are your main support network.
    I really enjoy reading your blog and you are not in anyway boring.
    I wish I could do something to help you I tell my family how you are getting on and they are all sending their love to you in this message.
    Take care luv Rachel xx

  13. Hi, your posts are never boring! Keep us all updated with your house plans, wedding plans and life. Take care x

  14. Your posts are far from boring hunni!! I can imagine how daunting it would be to make such a huge decision. It is so sad that you are at a stage now where funeral plans are topics of conversation for someone so young! Keep us posted on your progress and hope that you make it home soon xxx

  15. Dear Kirstie,
    You are a very inspirational person. I've been reading your blog since you were on Russell Howard's show and I am awed by your strength and determination xox

  16. I think it great how you have found somewhere that is still close and yet can make you feel that little bit more independent. Your so amazing and I think so many people who have to face obstacles so small in comparison to what you not just take on, but fight to get past must be envious of your determination and sprit. I know I am :)

  17. i, too, love pajamas! if i could live in them, i certainly would :)