11.1.17

Cold Turkey...


So the past few weeks have been HARD, just really difficult. I was on my IV's until Friday and they just make me feel crappy, in all honesty I was a bit fed up doing them this time and just didn't have the patience to be mixing up, drawing and administering antibiotics three times a day. I got through the two weeks though thankfully unfortunately I just started to feel really off and weird and super anxious like all the time. I didn't feel like myself at all. I started to get anxious about doing anything:- moving, getting changed, brushing my teeth, being by myself, going for the loo... so on and so forth. I was talking about a few weeks ahead of time and I just started to panic for no reason. Then it would reach bedtime and going to sleep and on the either Saturday or Sunday I had a crying fit and we thought maybe it had something to do with me coming off of the high doses Codeine I had been taking while I had been having some pleurisy. Monday evening however I was just hysterical, I wasn't me at all I was crying and just saying "I can't do this anymore" "I can't be this person" "I just want to be able to switch my brain of" "Why won't this go away?!" You know everything you can think of I was probably saying and it just wasn't me I'm not like that at all so we knew it had to be something more. Ironically the day before I had said something about taking my anti-anxiety medication. I decided to check my pre-made up drugs for the week and tah dar there you'll have it there were non of my anti anxiety meds there which ultimately meant I hadn't been taking them since last Wednesday. I looked up the side affects of coming off of the drug 'cold turkey' and what they said was the patient would likely be in a state of "Mental disarray and Chaos" and too bloody right! That is the most accurate description of a side affect I have ever read absolute mental disarray is what I have been experiencing for the past few days. I have been a utter crazy person. I'm just so pleased we figured out why I was feeling the way I was because there is no way I could have carried on the way I was because it was just so incredibly awful. My advice is to NEVER go cold turkey off of a antidepressant/anti-anxiety medication it will send you insane lol!    
 
I feel so awful for anyone who's had to be around me, at least in the last week, I've been so unlike myself. Saying all that though I had a lovely second Christmas with my Boyfriend which we celebrated on New Years Eve, the past few weeks have been quite quiet though because my IV's have restricted when I can go out and then me feeling just generally awful has meant going out hasn't been much of a option.
 
I had a clinic appointment today though which I had no expectations for the appointment luckily everything is nice and stable lung function is sitting at 24%. There is some worry about my pseudomonas and that is keeps coming back so that's what we're currently trying to sort of tackle that so I have to go back Friday where they are going to start me on a antibiotic nebuliser which hopefully will start to keep it at bay. Recently I've been finding it harder to shift the gunk that's in my lungs so we're going to do some intense physio when I'm there so we can try and shift some of it. I've also been having problems with sleeping at the moment, like basically I may as well not be sleeping as I'm not really resting whilst I'm asleep my body is working so hard all the time, so we're going to do a sleep study as well to really get a good look at what's going on whilst I'm asleep to see if it's oxygen related, fluid related, secretions all that type of thing.
 
Everything seems to be still positive which is great and I'm finally starting to feel like myself again after the accidental missed medication lol
 
As always, thank-you for reading and chat soon
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29.12.16

2016 was good...

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Hello everyone!!! I hope you all had a lovely Christmas! Mine isn't quite over just yet, me and Mark didn't spend it together and therefore are having our own Christmas this weekend which I am the most excited person in the world for! I just cannot wait to give him his presents, it took me a while to get into present buying this year but once I did I really got into it so therefore I'm excited, I actually love giving presents more than I do receiving them. So that's going on this weekend. I had a lovely Christmas with my Mum and Dad, it was exactly what I wanted quiet and peaceful and just easy, we popped to visit Candice and the kids for an hour and that was fun as well because the kids were all excited. I got some lovely gifts as well, I really appreciated the clothes I got because at the moment everything I wear is about 2/3 sizes too big for me and I'm reluctant to buy new ones because I expect to put on weight after I have my transplant but getting some new ones that actually fit is nice because now I have clothes that actually fit and I feel less like a baggy hobo all the time lol. I'm still on IV's and actually will be till next Friday now I didn't realise I was on 2 weeks worth (because I'm an idiot lol) so I'm a bit disappointed because I really wanted to spend one of my christmases IV free, but it seems that is not the case, but I'm not too bad so all in all I should not complain. 

This week has been a lot of reflecting over the year for me. A lot of celebrities have died this year and admittedly it does seem like an unusual amount but everyone seems to be saying that "2016 is such a bad year" because so and so died and for me it just seems a bit silly to put a whole year down as being bad based on a celebrity who you've potentially never met and have only listened to their music or watched their movies. I'm not saying its not sad because it is but I've always viewed life as something to celebrate not mourn and I guess I just see death as a part of life, we will all die eventually and so surely if you view a year as bad based on a celebrity death every year for you is probably going to be bad for you and I think that's really sad. 

You know I got chronic rejection this year and have been given a pretty shit prognosis and I got put back on the transplant list and I still don't view this year as bad, I've had a pretty great year:- 

- I'm alive 
- I got a baby nephew 
- I went on holiday for the first time 
- I went to Wimbledon again
- I reached 18 months with my heart and lungs 
- I saw Bernice get married 
- I helped pick Gina's wedding dress
- I'm still with my amazing boyfriend 

And just so many other little things that seem little but just add up to make such a great year, little things like getting a Birthday card off of my Nephew that he wrote entirely by himself, that is something I will cherish! I mean I started this year entirely differently to the way I'm finishing it because I started thinking I was going to be doing far more than I have and I'm ending it dying again but I have still spent a wonderful year with all the people I love. It's a year I wouldn't have had if it weren't for my donor and every year is a GREAT year regardless of who dies, who becomes President or Prime Minister, what's happening politically, what celebrity passed away this week, who cheated on whoever. For every moment I am breathing that makes that moment a good one and I might be sad, exhausted, frustrated or angry in that moment but that does not make it any less significant or great. 

I usually make some kind of resolutions at the end of the year but really I can't make any this year, my main focus is staying as well as I can for my transplant, focusing on staying the positive person I am and not letting outside influences affect that, because I too easily let other things distract me from what I really should be focusing on which for the moment is my health. I plan on still living as fully as I can, while I can, and just doing as much as we can to make life fun even whilst I'm this ill. I guess my resolution is just to make sure life is fun and to keep doing what we've been doing for the past 4/5 months which is just adjusting to my new ability level while still making sure I'm living :)
    
As always, thank-you for reading and chat soon
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16.12.16

It's been a month...


I know it's been a month, a whole month since I blogged. Where have I been and what have I been doing? Well a lot of relaxing and chilling out because that is essentially my main treatment plan but for most of those 4 weeks I had a horrendous cough which was producing so much phlegm and honestly i just have never been so exhausted in all my life from the amount of coughing I have been doing, at some points you kind of question whether you should let yourself drown in your own phlegm because you just don't have the energy to shift it yourself. The past week though has been so much better, I still have a cough but it's how I would consider a normal cough that's just a bit tickly and annoying but the phlegm has gone so I'm not having to exhaust myself trying to shift all the gunk which I can't even describe to you how great it is. I don't by any means feel well but it's just a really lovely thing that means I can get more sleep and I'm in less pain. 

The past two weeks has been quite busy really for me anyway. I've been at the boyfriends and we've just been doing Christmas non stop. We decorated the flat, made a gingerbread house, went to my family Christmas meal, Christmas shopping, my birthday, spa, London, so much stuff it almost sounds like I'm not ill LOL. In between all that though I have the days where I have to "pay" for the busy days for example after London I ended up in bed all day on oxygen. Also I wouldn't even be able to do anything if it weren't for Mark pushing me around in my wheelchair. It's been a really fun two weeks though and Ive thoroughly enjoyed myself and now I've had my last clinic before Christmas I feel like I can relax a bit and enjoy the lead up to Christmas. 

Clinic went well though everything is really stable which is really reassuring but at the same time makes me worry because I'm worried that means something is bound to happen. I also worry that because I say stable people think that means I'm well if you know what I mean? Stability is great and wonderful but when I say stable I mean, I'm still very ill I'm just not getting any more ill for the moment not that I imagine anyone thinks someone with a 25% lung function is well but it really is difficult sometimes because generally no matter how ill I am I generally don't look that ill so people assume I'm alright. Stable is good though we seem to have found a nice place with my drugs and now with the disappearance of the phlegmy cough I have a bit more energy I just hope we can stay here for a little bit especially over Christmas. I'm still heavily reliant on people though especially at the end of the day I find it so exhausting getting changed so sometimes need help with that and washing my hair has become a impossibility for me now luckily my mum and Mark have become my professional hair washers. It's difficult for me having to rely on people like that but I'm so lucky I have people in my life who want to help me.   

I had a Birthday! My 26th to be exact, I don't know how I feel about birthdays anymore I had the loveliest day don't get me wrong but sometimes for me my birthday is just a bit of a reminder that I've managed to go another year not being able to do everything I would like to. I had a wonderful day though, I got thoroughly spoilt, I got some beautiful gifts, Mark took me to a spa and I got to relax in a Jacuzzi and it wasn't a horrid aggressive one that takes me ages to adjust to but was quite calm and just felt so amazing on my ribs! I got my nails done and they had these little pods in their relaxation garden and they had massive beds in and we just got to chill out, it was such a lovely afternoon. Then we had the palaver of getting my hair washed in the changing room but we managed it and made our way to a lovely evening meal with a few friends. 

I still have a few bits and bobs to do for Christmas, I'm actually so behind I need to send some presents which I should have really done like last week but I'm going to focus and get it done! LOL I hope you're all well and will not leave it so long next time :) 

As always, thank-you for reading and chat soon
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