PIt's been a bit of a rough week. Mentally and emotionally it has been an expletively awful week if I'm being honest with you. It's that time of year which I find quite difficult, the weeks leading up to my transplant are always fairly tough; remembering life as it was, how bad things became, the things I've achieved and more prominintly, the things I haven't. I also think a lot about my donor and their family which is a whole mixture of emotions. I've still not been sleeping well either and that is really taking a toll on how I feel and cope.

Wow!!! What can I say, thank you to every single one of you who have read, checked in, left a comment, been influenced by anything I've written and been part of my journey. When I saw 200,224 hits I was shocked, amazed, proud, humbled and very happy! I honestly can't believe how a simple idea for starting a blog has grown such a big audience. It has meant so much to have people out there cheering you on, commiserating the sad times and celebrating the good. For me, this blog has been an outlet when I've needed it most. Times when I've needed to break out of the confines of my own head, express the loneliness, feel the catharsis and share the accomplishments, I've been able to do it here. I means so much, I'm not exaggerating when I say that I'm not sure I could have got through the bad times without my blog.  It's like a form of therapy, genuinely. 

 My pain has been very bad this week and to add to the mix of trying to make me go officially crazy, I am suffering badly with insomnia. This seems to be hormonal for me but is really the worst possible thing to add to pain, steroid effects, low self esteem and precarious juggling of mood swings 😁 once again I will say, it's been a rough week. 

Last night I was watching tv, a show about mentally disabled people being encouraged to work in a hotel. It was a great program where you could literally see young adults who had difficulties, grow and blossom before your eyes; just because they were given time, support and a chance to show people their amazing personalities. Anyway, there was one guy with Down syndrome who had terrible panic attacks, and when they showed him unresponsive and almost begat ive during the throes of an attack it was truly heartbreaking and a very tough watch. One of the people caring from him was concerned and phoned his mum. Despite watching him in a horrible state, her voice was cheery, she reported what had happened and told his mum she thought he was 'fine'. I couldn't for one second have anticipated what came over me. I went from being okay, watching tv, to shaking and sobbing. 

Suddenly, I was back to one of my most disturbing times in ICU. I had a nurse looking after me who I'd never met before, she didn't know me, and so she couldn't know that the way I was behaving/feeling was in no way usual for me. I was suffering from a build up of CO2 in my bloodstream, not always immediately obvious, and usually fairly smiley I was shaking uncontrollably, cold, crying and begging to see my mum. All I wanted was to see my mum. I was trying to text her, utter nonsense but it was the best I could manage. Every time I asked I was told it wasn't visiting time yet. I was panicking so badly and I have never felt so absolutely powerless. Mum actually phoned through to my room because she realised something was up and my nurse cheerfully told her I was 'fine'. 

As the CO2 built up I felt worse and worse, I can't describe how terrified I was and all that mattered in the whole world was seeing my mum. I couldn't get anyone to listen to how bad I was and I just couldn't cope. I could feel myself slipping down a dark hole and I honestly thought I was going to die. I gave up. I couldn't make anyone hear me and I resigned myself, the first time I ever had, to slipping away. 

As it turned out I passed out, medics rushed in, stabilised me and finally people realised I hadn't felt too well. When my mum was allowed in I clung to her like she was the only thing that ever mattered. I couldn't e plain properly how awful I'd felt. I was stone cold and soaking wet from sweat. It was the worst time of my life. 

I could never have expected that that tv show could take me back there. I've thought about that day a lot over the years since transplant, often sadly, often angrily but never with such a pure emotional response before. In a way, I think it was really needed. Much of ICU and post transplant hospital time is very vague to me with certain memories, that one being the clearest, standing out against the rest. I don't know why it happened but I think it was probably a good thing it did. 

Lately I've been struggling a bit, emotions running a bit wild and drugs doing their thing are causing me to be a bit all over the place. I think another major fact is that on October 10th I'll be 4 year, I'll say that again 4 YEARS post transplant. This seems inconceivable to me and has quite a lot of emotional baggage tied to it. Only 50% of transplant patients make it to their 5 year anniversary so that's a big thing to contemplate. It makes you look at how far you've come, what you've achieved, what you haven't. It makes you want to rush out and do all the things you want to while you can and simultaneously consider all the problems you still have to overcome. 

I am also nearly 30. Another huge milestone that makes you sit up and think, 'oh my god, everyone's getting married and having babies, what's wrong with me?! ' . 

It's filled me with despair and terrible guilt for those not here who could be doing a much better job than I'm doing. But tonight I feel a strange sense of hope. 

After last night, I have thought about post transplant a lot. I'm not in the perfect place. I'm often in pain, tired and I don't know if I will ever achieve the dreams that mean so much to me.

But I am still here. I can use my voice, my story to make a difference. I'm still breathing and alive and I can change my story. I have been through more than I think I often realise I have overcome. And for now, right this minute, that's enough. 

Thanks for all the lovely comments after my last blog (see post below). It was a really hard one to hit publish on, but I think it was really important to get it out and to hopefully encourage others to talk about their experiences too. Depression isn't anything to be ashamed of and I think it's great that other bloggers are talking about it too. 

Anyway it has been a hectic few days! I've been struggling a bit with pain and medication side effects the last few days so I've been a bit all over the place. As I told you last time I got a cancellation appointment for Sunday to get a CT scan on my hands to look at the tendons, muscles and ligaments. My mum and I journeyed up to London for the second time in a week, and arrived at the Chelsea and Westminster hospital. Must say they are a great hospital, always clean, reminders to clean hands all round the hospital, and staff are always friendly and helpful. I was called for my scan and went in to the consulting room. Was told to hop up on the bed... 'Okay' I thought, then to lie down 'hmmm oh okay'. Then the doctor proceeded to put some paper towel over my middle.....'hmmm that's weird'. Then they asked me to lift up my top.....'erm what?! Why?!'. It turns out there were two referrals on the system and I was actually booked for a liver scan! It was quite amusing with me keep saying 'no hands!' And holding them up (you know, just to make it clear) and them saying 'no it's definitely a liver scan!'. So, I got my liver scan ticked off at least and all looked ok so that's good.

Mum and I got some lunch from Carluccio's again and once again the service and meal were brilliant! They made a special gluten free for me and it was so light and tasty. Thumbs up to Carluccio's it's one of my new favourites. We then decided to go and check out Harrods Christmas department because they are just round the corner and if you didn't know I adore Christmas! Harrods display always makes me feel like a little kid, and I missed it hugely when I was too ill to go. So I always go each year to enjoy it all the more for missing out. I mean just look at the prettiness!!!

Mum bought me this little piece of gorgeousness which I'm thinking I might keep out all year 😃

I've struggled with depression for a long time on and off, if I'm honest probably a long time before I went on the transplant list. I have denied, pushed through, struggled on, broke down and finally sought help. Talking to a counsellor and starting anti depressants was something I had put off for years, but really helped me to make some sense of the bloody mess in my head. That said its never been plain sailing, no 'you're better now' it's been up and down but bearable.

That is until a few moths back. I went through a very black time. Not that reasons are needed with something like depression but a lot was going on. A few transplant people were in bad situations and then passed away, I had finished my drama course that had given me so much structure and happiness and I felt a bit adrift, I was in a lot of pain, my fatigue was unbearable and I felt that the future I had clung to so desperately was slipping once again from my hands. Tantalisingly there but just out of reach. Every day these things and a million little things magnified out of proportion,ground me down until I just felt there was no hope anymore. I was irritable, extremely sad, whiney, anxious, and just wanted to stay home and hide under my duvet, to me that seemed the safest place to hide from everyone and everything. Yet I felt guilty too, why was I here screwing up a life that I had been gifted with? Why wasn't one of those more deserving transplant patients here in my place living their life? I felt unattractive, unwanted, miserable and constantly questioned why anyone would stick around me more than I had ever done before, why had I had I been saved and others more worthy, lost?

I think it was the worst I had ever felt, and as honest as this blog has always been it's embarrassing to say both I and my family were really scared about what I could do and concerned as to where this would end for me.

I tried to share how I felt with friends, explaining how bad I was feeling and why I might be out of sorts or quiet. Some stepped up incredibly well while others seemed hell bent on kicking me while I was down. My whole support system of family and friends shifted and again I didn't know how to get back on my feet. I was really rock bottom. 

The second thing that changed was feeling my health was creeping slowly back onto track. It had begun to feel as though literally I had no control on my health at all. So many new appointments for things needing to be investigated, or checked that yielded little or no firm result of path forward. Pain every day, fairly bad pain too and fatigue was weighing me down more surely than if I wore a ten tonne pack on my back. I went to my clinic appointment at my wits end. When the first small changes of the steroid dose made a difference, there was an instantaneous shift in mood. A feeling of fizzing excitement, joy inside but all the while tempered with worry that it could crash down around me. Again, it's not an easy road. Steroids and medications really do mess with your emotions and chemical balance as well as sleep patterns, and silly things like temperature control which seem small but imagine how bad you feel after a night of no sleep, then add terrible mood swingers, being boiling hot and pouring with sweat as well as constant pain to the mix.

My pain is finally being addressed because I was forceful enough to not put up with it anymore. Yes I need more tests, yes I've had to push and pester for these tests but they may give some info that is useful. I was annoyed when telling a friend about all these extra appointments they asked 'but do you actually want any of those done?'. Funnily enough no I don't, but similarly would you want to walk around in pain all day every day? I need to exhaust all the options to live my life the best I can. So I will do what I need to to get there. If all else fails the pain team I'm being referred to are supposed to be incredible so hopefully they can help and I know I've done all I can, which counts for a lot. I'm not making a point of saying this for pity, or as an excuse, I just want a little bit of understanding that I might not always be feeling my best or be in pain, knackered, nauseous or raging with my own head. 

The third thing, again stupidly small, is listening to my body and mind a bit more. If I'm feeling down, I know it can spiral fairly quickly. So for me, a little walk if I can manage it, or getting out to sit in the garden, or having some quality cuddles with Lucky can help. As can reading a book, watching something on Netflix or browsing on Instagram. Not major things but they make life a little bit nicer. Trying to get out and see people helps to, it's really hard sometimes but it does wonders for you mentally. Ive also, when feeling slightly more adventurous, pushed myself to do little things that cause me anxiety, but give a huge sense of achievement after they are done. And go to prove anything is possible. 

Blogging returning to my life, has made a huge difference. It was always cathartic, and helped me to let my emotions out of my head. It's so incredible that so many of you still read and I love hearing from you. It made my day to hear from some readers who have been sticking with me from almost the beginning. You are all awesome! 

The last major change is cutting right back on the gluten. I had been suffering with my tummy for weeks. Looking like I was about 6 months pregnant, a constant stomach ache and generally feeling very grotty. Cf patients suffer tonnes with their stomachs so I assumed it was just that. I'm not even sure what made me think to try cutting down on gluten but literally within 48 hours my stomach had really reduced down, I felt less hungry, more comfortable and less heavy. As I've said in other blog posts I've had fun trying new foods I wouldn't usually order, trying out gluten free cooking, and eating healthier too. I have a bit more energy and feel more comfortable. 

All of these things have transformed my state of mind and wellbeing in the past few weeks and I'm finally feeling settled, and dare I say happier. It feels as though the carnage that seemed so insurmountable was actually putting me in exactly the place I needed to be. I'm well aware this could all change again tomorrow, but for now things are better, cautiously, slowly better. I want anyone reading this to know that if you are going through hell like I have, it can get better. If you had told me the change I've had I would never ever have believed you, but I hope in some way it could give you some hope to hang in there. Keep going, stay open minded and try new things, you never know how they might help. Be kind.

My week hasn't been too bad, I've been having to use my airboot and crutches again which is a bit of an annoyance. My sprained/strained foot is getting so sore so I thought in order not to miss out too much I should wear the boot/crutch combo to try and give it some support. It has helped but I'm just worried about when do I get to the point that it's still hurting a lot and I need to go back to the docs? Also got the scan on my hands tomorrow which is good because they have also been pretty sore lately especially when doing my baking and cake decorating 😔 

I've had a busy week and have been trying to rest in between but even so it's nice to have had the day in wearing pjs today. 

Yesterday I spent the day up in London ☺️ first of all I caught a late lunch with my bestie Pippa at Bills in Holborn. Bills has always been a haunt of ours but I was slightly worried about going there glutenless! I'm not being religious about absolutely no gluten ever ever again, but I am finding big benefits from cutting out bread, cake, noodles and pasta. 

Anyway I decided to try the Halloumi and hummus burger on gluten free bread. The other choices were mainly salads but some tasty starter choices too and I would have liked to talk about the pre theatre menu options too as they seemed to be gluten free too. 

It was one of those decisions where after I ordered I thought "hmmm wish I had gone for something else instead" but once I'd tasted it I was very VERY glad I didn't! It was a really delicious plate of food, yummy salad, toasted bread, hallomi, hummus, roasted pepper.... Fresh, clean and fantastic. 

https://www.organdonation.nhs.uk

I've still been struggling with the steroids and especially my diabetes, and the change of weather has done something weird to my joints/bones/pain level which isn't fun. But on Monday I was able to go up to Holborn to see my friend Pippa. Before we met I popped into Spitalfields market, one of my favourite places, it was lovely to have a half hour mooch round the market, they also had an African market, which was a riot of vibrant colour that left you feeling cheery despite the gloom and rain. When I met Pippa we went to another favourite My Old Dutch in Holborn. It's a gorgeous pancake house, once again hued in beautiful colours where you can sit and chomp for ages! They do a lovely cup of tea too 😉 I'm trying to cut out gluten at the moment as my tummy hasn't been liking it recently and they kindly made me a gluten free pancake. I had a cinnamon and pear pancake it was delicious.... And seriously huge! That said their savoury ones are divine too. Their fries are also in fact the most amazing fries ever. Lovely staff, yummy food, highly recommended! 

We had a little mooch round Covent Garden which had been installed with a huge piece of art composed of balloons which I thought I would love but in fact made me feel oppressed and claustrophobic.... Moving swiftly on! then I headed home and Pippa went off to work.

I had to rest up most of Tuesday, Wednesday and Thursday mainly due to pain :( 

It was worth it to rest up for Friday. I had been wanting to see Gypsy for ages. I've never seen the film (shame on me), but have recently got into the soundtrack, I'm a sucker for a score! My friend Claire had seen it before and informed me that I had to go. So we booked up and met up for dinner before the show too.

We went to Garfunkels on the Strand but was quite disappointed with the access to the restaurant. Claire uses crutches and has difficulty with steps, so we had picked restaurant specifically with this in mind as their website stated 'disabled access'. However there was a step into the building (how you'd manage the entrance in a wheelchair is beyond me) and the toilets were downstairs so not very accessible. However, Gypsy was amazing. Imelda Staunton ruled the whole show and gave an incredibly moving performance. The rest of the cast were excellent too. It's only on until No ember and I suggest if you can, go see it! The theatre itself is great, we were in the dress circle and the view was perfect but looking round there wasn't a bad seat in the house. Definitely worth a ticket. 

I've literally heard today that I can get my spinal MRI done tomorrow (picked my jaw up off the floor as such speed never happens!) so will be a pretty tired Tor by Sunday! Off to sleep now. X

I'm actually loving writing again and it's part of my plan to get out of a pretty dark place I've been in. Anyway I've been enjoying thinking up ideas to blog about and taking photos of what I'm up to 😊

I've had some lovely comments and messages from you guys. One actually reminded me that I kept saying I would do a Q&A session here with anything you wanted to know. Well I'm all organised now, I even have a book I'm writing ideas etc in so if there is anything you fancy asking, fire away. 

I think there is some wariness about what you can and can't ask, what might upset me etc, but please, let me be the judge of that. When I get enough questions I'll do an answer blog. You can tweet, email, comment on this post (you can also do so anonymously if you'd prefer). This blog has always been a very cathartic and healing place for me so it seems that this might be a good idea. If you know someone waiting for transplant or anyone who needs support, send them here to ask anything they want to know, I might not know the answer but I'll try my best. 

Also, doesn't have to be transplant related! 

Right, steroids are keeping me awake with nightmares (hence blogging at 02.15am) but I am absolutely exhausted so am off to try and sleep 😴😴😴😴

Xxxxx