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.
I don't know what changed. But slowly things have started to improve. The ones who were there to look after me I will be forever grateful too you don't know how much it meant.
One of the first changes was trying meditation. Not at all what I would have considered as something that could work for me but if it helps I'm not going to question the why. I had been being pushed to meditation for a good few months, in those strange ways where things kept pointing me towards it in everyday life, and something keeps showing up again and again. In the end I took a friends advice and ordered this book, what did I have to lose? It's been great to me, I can't explain exactly what's changed but it's definitely helped a lot. You can work through the book and meditations on the cd at your own speed but I'd recommend trying it for a more present, calm outlook. It's easier to see things in perspective and recognise the emotions you're experiencing without the need to 'do' anything about them. It's also easier to spot when you are falling into the downward spiral of depression and self doubt.
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.