4.19.2016

My Bucket List

Right, so as promised here is the wish list. Some are more important to me than others but all things I'd like to do big or small. I've been reading/watching stuff about the law of attraction and not only that but just general positive thinking and imagining the life you want. And basically it can't hurt so I'm putting these things that have lived in my head out there into the world! 
I will probably add to the list, again, suggestions welcome but will also cross off too and update you maybe at the end of the year. Got it? Right lets go! 

1) To perform in Londons The Phantom of the Opera. If I had to give up the chance of everything else on this list in order to do this I probably would. I realise that while performing terrifies me, it is literally the happiest I ever feel too. Phantom as I've explained before means more than I can explain to me, in short this is the dream that has always got me through the hardest times of my life. It is always there. I'm actually getting emotional so yes, ultimate goal. 

2) In addendum to this, one of the happiest weeks of my life was when I did work experience at Les Miserables. I felt for the first time I truly belonged there. So work experience/shadowing on any west end shows. Being in any west end shows or spending a little time with some of my musical theatre icons who can share their experiences and tips. 

3) To continue learning so more drama based courses. Most appealing at the moment are an accent course and a stage combat course (despite the shattery bones and bruises like a peach!).

4) Again, mentioned him here before, but John Owen Jones is my favourite singer and actor. His voice is sublime. To duet with him would be out of this world but also makes me feel physically sick with nerves!

5) Run (complete) the London marathon. Yes really.

6) To visit the Globe Theatre.

7) To visit Portabello Rd Market.

8) visit the Sky Garden bar.

9) Afternoon tea at the Athenaeum. 

10) Buy flowers at Colombia Rd flower market.

11) pillow and secret cinemas

12) Brighton for a weekend.

13) To go to New York.

14) See a Broadway show.

15) visit the Broadway Cares market as it literally looks like my heaven.

16) Visit Italy: Rome, Vienna, Murano, Venice. 

17) Water taxi in Venice.

18) Go to the Easter market in Austria.

19) German Chistmas market.

20) go to Sardinia.

21) Ride on a motorbike.

22) Ride the Orient Express on New Year's Eve. My friend did this is looked amazing!

23) find a special someone. 

24)Leave a lock on the love bridge in Paris for my donor. 

25) Stay in an overwater bungalow.

26) make a difference, a real difference to someone's life. 
27) go to Wales.

28) visit Ireland.
 
29) Visit Scotland.

30) Return to Florida for my 30th next year. 

31) Watch the changing of the guard, did it as a kid but would appreciate it now.

32) To visit the set of Once Upon A Time, my new obsession. Or to meet Robert Carlyle who is amazing! 

33) to see my lung function reach more than 3 litres, it currently sits at around 2.7 x

So that's it for now but always ready to hear new suggestions! 

4.18.2016

Update and putting it out there

Hello gang! 

I'm sorry for the lack of posts, I haven't abandoned the blog again I promise! I've tried to write a couple of posts but they just didn't really want to be written so I'm giving them a miss for the time being.
Anyway, my pain is still not sorted as latest painkillers literally have no effect on my pain....at all. Good news is that I went to a clinic appointment and they are very pleased with me from a lung point of view so I'm not back (hopefully) for 6 months when it will be my 5 year anniversary with new lungs! YES 5 WHOLE YEARS! 
However the slightly crap news is, that I have potentially broken my foot again 😒 there is no emoticon to display my disgust at this. I'm at Fracture clinic on Thursday so will find out what's going on then but in the meantime I'm on crutches and in an air boot. The crutches and extra weight of the boot are zapping my energy completely and making me more hurty. Not impressed at all.

Anyway as I'm writing this my idea of the blog post is changing so I'm going with it guys going with it! 
There have been a few things lately that have been making me feel a bit odd. As I mentioned last time, there is a real sense of wanting to get on with life and do things but without any structure, knowledge or plan of what I'm trying to achieve or how to achieve it.
I've lost a couple of friends, there are a lot of CF and transplant friends struggling and one in particular who really has an impact on me. Once again it appeared at the forefront of my mind that this second chance, this gift could disappear tomorrow. I could get rejection, an infection, pneumonia, cancer, and that would be the potential start of the end. 
I feel very much caught between going to achieve and rush out to experience everything, while not always feeling up to it, depression, anxiety, pain and fatigue levels hampering me or my appetite for foot breaking sodding things up. 
But after being incapacitated for a little bit again, I'm determined to start focusing on some good things. This weekend despite the foot and need to rest, seriously it exhausts me completely getting mobile now, I still managed to keep the plans I had as difficult as it was. 

So basically after all that, what I came on to do is to write a bucket list. An updated bucket list of things I want to do and see and experience. Feel free to chuck me some suggestions! 

The list may have some far fetched items some boring items but it's mine and I make the rules. My theory is it can't hurt to vocalise/visualise these things and by putting it out there it might start happening! 
As I've withered on a lot, I'm going post my list separately, either tomorrow or Wednesday, so keep a lookout for new updates. 

PS thank you so much to Linda Jane who wrote a comment on my last blog, your words made my day. What an incredible, selfless lady you are. Much love to you xxx

2.13.2016

A little (long) update.

So, after trying to organise my crazy mind into some sort of order I'm going to do a little update post first and follow it up with other posts about things I've been getting up to/non medical bits.

As you know chronic fatigue has been a big problem for me since transplant. Pain has also been a huge deal for me. Last year I was put on a mega dose of steroids to hopefully improve the fatigue, which they did. However, steroids have massive lists of dangerous side effects, including weight gain, thinning skin, hair loss, diabetes issues, mood swings, depression, bone thinning, and tonnes more. So the plan was to start off high and lower gradually to the point where I'm at the lowest dose while maintaining the benefit of having more energy. It's extremely unpleasant to change doses as I got a barrage of side effects everytime I did it. It's also mentally very hard as at times, I have felt that people and health professionals have thought I'm "a bit tired" when in fact I'm so painfully exhausted that it's comparable to pre transplant in terms of not being able to plan for the future because of fatigue and associated nausea, pain and dizziness. I have been through hell health wise, trust me, if it wasn't a big deal I wouldn't be bringing it up. 

Anyway after a crappy time lowering the steroids I'm kind of done now I think. I've managed to go from 30mg down to 16mg. I did go lower but lost all benefits. At 16 ive been not as good as poss but not as bad as I was which is fine with me. During the lowering my diabetes went crazy (side effect) so I've been seeing the diabetes consultant and am on my usual insulin for meals and a long lasting insulin overnight. It has taken a really long time to get them back under control and return to lower doses of insulin again. When I saw my dr in January she was really happy with my progress and control which is again really important as bad control can affect vision, your feet, things like wound healing and can lead to amputation of limbs if left to run rampant for long periods of time. Scary stuff.

Anyway, things are approaching "normal" which is nice. Having a bit of a blip last couple of days which I must admit is difficult to cope with. I've had hot and cold sweats, terrible exhaustion, dizziness, shakiness etc but am hoping ive done too much. I'm trying really hard not to think worst case scenario but I think it's also necessary to think that while it's been the hope that the fatigue might be almost eradicated, it's safe to say it will remain a part of my life, although hopefully not to the extent of today! If I had to go out today I would need a wheelchair because my body would just not cope. It's really hard to feel your body is letting me down again.
I'm hoping now that I can start doing some things to improve my skin, lose some weight etc that will be less like throwing stuff into a black hole and actually see some results! 

Mentally it has been rough. Both diabetes control and steroids really effect my emotions and ability to cope. Add in other things like weight gain, moon face etc that affect confidence; the yoyo of emotions that go with these; having to deal with feeling rougher than usual; not really having a baseline health anymore and then day to day small dramas has been so so hard. Anxiety and depression have definitely had their moments these past few months and again, I think acceptance that they will always be a part of life to some degree is hard but necessary to realise. I have been having a lot of flash backs and intrusive thoughts about my time in Intensive Care, so I have been having sessions with my psychologist to talk through my memories properly. I also took the big step of visiting ICU to see it and challenge my perceptions. Must admit, scary still but different entirely from what I imagined it to be like. I think it's definitely helped. 

The rest of my anxiety is either nameless (worse as I have no idea why and therefore can't do much about it) orto do with social situations. Bizarrely in mundane non scary situations as opposed to situations where I could see a legitimate reason to be nervous! 

There have been times when I've talked about my depression and anxiety with close friends but wish I hadn't. However, I can also vouch that a lot of people I have told have been great and are really supportive in tiny ways but which mean a huge deal to me. 

Pain wise things are quite crap. I saw a pain team, who referred me to physios. They gave me exercises to help strengthen my back, saw me twice then discharged me 😔 I have no effective pain relief so haven't been taking anything since before the new year, not because I'm not in pain, I am, but because the side effects of pain relief vs the amount it hurts just isn't worth it. Instead I'm relying on foam rollers, TENS machine, stretches, sports massage and heat pads to help but nothing makes a big difference for any length of time. Basically I am in a lot of pain everyday and feel unsupported in dealing with it. Not good. I'm going to see what my options are and revisit some people to see what they suggest. 

So after that loooong update you're updated! Definitely good points and some things that still need a lot of work but this is where I am. 
I wanted to say a quick thank you as I'm getting more replies/emails etc to posts now which I love! It was great to hear from an old friend Tanya (I'll be in touch soon I promise) and to get a lovely lady via Facebook that she spotted me at our local theatre and was too shy to say hello. Made me feel like a celeb! So hello Elaine and Tanya! 
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