So I’m finally sat at home, outside, on the swing seat, feeling the gorgeous sunshine on my face, breathing in the fresh air as I take a deep breathe in, with Willow curled up asleep next to me and my blanket wrapped round me (cheers to having no body temperature regulation) but smiling as I look up at the beautiful blue sky and think to myself “now, this really is the life”.
It’s the simple things, the little things.
If you didn’t realise already from the above then I’m home, yep HOME!
After five long months I finally got discharged and this time I’ve lasted longer than a week! I’ve been out just over two weeks now and I am loving it! Well, let’s be honest, as with my blog and writing I always aspire to be true to myself, that’s really important to me. Am I happy to be home? Yes! Am I enjoying the freedom of not being in hospital, stuck in one room, stuck to one routine, nurses and doctors at my every move and more? Yes! Of course! Who wouldn’t be after five long months inside? But is it a lot to adjust and hard both physically and emotionally? Definitely. Is that normal? Yes! Plus there is no normal, or right or wrong feelings to have in this situation, everyone is different, but is it normal to not be superhuman at times and have emotions, fears and feelings when living with a chronic and serious, ever changing illness and complications? Absolutely! Though sometimes in this world and with the use of mass social media it doesn’t always feel like you’re allowed to express those and you have to be cheery, happy and positive 24/7 especially once being home, I mean you must be, you can’t complain at all come on you’re home now? Wrong, you’re allowed to not be ok, you’re allowed to struggle to adjust (yet again, for the millionth time after your latest admission) and you’re allowed to feel. I’m here to tell you I felt that, feel that and will feel it most likely after every admission I have, both short and long ones but especially the long haul ones. But I’m here to remind and tell you it’s okay to have those feelings and you’re not the only one.
For so long I felt like I couldn’t express these feelings and that maybe I was the only person feeling this? So to help both myself and others and write this blog is an important step and knowing maybe just one person might read it and realise they’re not alone is worth it all.
It’s actually been eight weeks since I started this blog and I obviously meant to finish and post it eight weeks ago but as usual other things got in the way, it gets frustrating as I want to do blogging more regularly but there is so many things that have to be in place to mean I can write well and think of ideas including being in good ish physical health, battling with time, keeping up with daily treatments, sleep, my pain and my brain fog and pure exhaustion being the biggest barriers. But I try when I can to blog as I do enjoy writing (rambling on) once I get into it which is normally half way through the night when I can’t/should be sleeping! #fortheloveofsteriods but it’s really important you enjoy what you’re putting your time into especially when you have limited energy and if through that and from sharing friends, family and/or strangers take the time to read it and enjoy it then that’s a bonus and a wonderful one at that! I’m always so grateful for everyone’s support online, constantly overwhelmed but constantly grateful, every single day, and I mean that, every word.
I thought about writing a new blog just an update and what it’s like being home, keep it short.. but you know me? My blogs are never short! But guess that’s just me, Ruth’s rambles! But hopefully they have some wisdom, hope and lots of love to give within and it means I am even more appreciative of when anyone takes the time to read them. Going back (see I always get taken on a tangent? If you know me well you know I do that talking too) though I saw this as a draft and thought well why not finish it and it actually relates to what I’m feeling now just in October rather than August.
Between those two months I have done lots though and filled my time up with lots of fun things, living life to the absolute full as I say I always will, well as much as a girl can with these conditions. In between just medically trying to stay alive at home, avoid hospital, keep up the daily treatments, meds, two admissions back to my regular ward, procedures needed, numerous weeks of IV’s and appointments to keep me stable, again ish. I’ll talk about all the great and fun things I’ve done on another blog though as this is already getting long, but at the same time I don’t want to squash it down as I want to write in detail and I enjoy it. But if you do continue to read, thank you, it really does mean a lot and I do hope you get something from it too.
But for now I want to go back and talk about why I didn’t just start a new post and I highjacked on to the back of this half started blog from back in August.
Well I did so because the start of this blog relates to exactly how I’m feeling right now and it needs talking about more.
Whether it’s been a five month admission or a five day admission the emotions are the same/similar and I want others to know, just like they have reminded me and my family this week that it is totally ok to not be ok. To put some back story on this for those who don’t follow me on social media or don’t know me as well personally, I’ve had, no, we as a family have had a really rough few weeks. I went in for one of my routine bladder surgeries two weeks ago, changing my SPC (supra-pubic catheter), doing the usual cystoscopy and dealing with the inflammation and removing the stones that had yet again built up in my urinary system and bladder. I have a good local urology team (as well as UCLH) that has been the same since 2015 and a great anaesthetic team who know me well and for the last half a dozen times I have had the same anaesthetist, the lovely Betsy every single time. I only ever have consultants put me to sleep and I always have an ICU bed on standby, though we don’t always need it, we have to be positive right? We always keep our fingers (and Willow’s paws) crossed. Preparing for the worst but hoping for the best, especially as for me the worst has happened, more than once.
In short I ended up needing that intensive care bed and I wasn’t able to be safely extubated, (breathing by myself without the need of the ventilator and machines that were keeping me alive) until a few days later. It was a really difficult time, for us all.
But the reason I wanted to carry on with this blog was because it doesn’t just hit your body hard it hits your mind hard too, especially when you have a chronic illness that isn’t getting better, has the potential and in some cases will definitely get worse, your emotions can be everywhere. Once I was more stable my mind started to process what had happened and it’s only when you stop and think it hits you and one night I just broke down. I literally cried and cried and couldn’t stop. Then fast forward a few days later and I’m home and again I just stopped and broke down, couldn’t stop crying. In a way though it has been good as I’ve needed to cry, needed to let it all out. It’s not good to bottle it up and I’m grateful I have such supportive family and friends I can turn to as well as the wonderful after care clinic that ICU run and one that I’ve been to many times before but is extremely helpful. I do unfortunately suffer with PTSD linked specifically to ICU and all the trauma I’ve been through and seen and every time it brings it all back to the surface and something I hide well but again it’s not anything I should be and am ashamed of, if I didn’t struggle emotionally I think it would be more of a concern? Considering everything I’ve been and go through I know and have been told it’s completely understandable. It is hard. It is scary. It is overwhelming and that is totally ok to say.
But going back to struggling, I was when I first arrived home after my five month stay, I did again after coming home after my 10 day stay in between and again after this critical care admission. It doesn’t get easier, you get more used to it yes but in other ways it gets harder too and I just wanted to write this blog/ramble to say to anyone else struggling it’s totally okay and normal and you don’t have to be a superhero. Coming back home has its huge challenges too and with chronic health the treatments and care still continue, the worries, the fear, the difficulties, the upset, the anger, the processing of what you’ve been through and fought through yet again. You’re allowed to feel it, all of it. I’m telling not only you but myself too.
It’s taken me a long time to finish this blog and I always get frustrated at myself that I don’t write more, I want to, all the time but everything just gets on top of me and the smallest things are the hardest especially right now. Plus, if there’s an opportunity to go out and do something fun and grasp life then I will always choose that! Social media is great and I love it but I also love getting out there and living as we only have one life, don’t waste it.
Above is a link to one of my you tube videos, a little update (only a few minutes I promise!) It’s to say thank you to everyone who supports me both near, far away, online and in person and also a little update on how I am.
For now Willow and I are just lying in bed watching the rain fall down, huddled in duvet covers and blankets and my favourite pjs looking forward to watching Strictly later! There is lots I want to do but whether my body will agree is another matter.. but I’m also trying to be kind to myself and like this blog remind myself it’s okay to struggle, it’s okay to be not be okay and it’s okay to feel whatever you feel, all feelings are valid and all feelings matter, including mine and including yours, just always remember that.