My clinic appointment went really well last week. My lungs are doing really well, no infection or rejection. My lung function is up, diabetes is pretty stable, everything was good, and I am so incredibly grateful for that I truly am. However I think it's important to give you an honest picture of life after transplant as I always said I would, and there are still a couple of issues.
For a long time now I have spoken about my pain and fatigue which are part of my daily life and fairly restrictive at times. My doctors and I have done test after test to try to get to the bottom of the fatigue. I've had extra high doses of steroids which have been absolutely horrendous in terms of how they've made me feel emotionally and physically. They have helped and over time I've weaned down to a dose which we would still like to get lower but at the same time, it's pointless if I'm losing all benefits to my energy which is kind of where I am now. Pain wise I've seen pain specialists, physio's, and rheumatologist's. I've tried some very strong drugs, heat pads, TENS, massages, exercise all with little to no success.
It may sound ridiculous but weaning on to each medication, being battered by side effects, pushing through that to find no impact on pain at all, weaning off of the drug and then phoning/visiting hospital and starting the process again with another drug is soul destroying. Not only are you physically and mentally going through some very nasty effects, but each time you get your hopes up that this might work, only to find it doesn't. Another aspect is the institutionalisation. I've been ill all my life but it's very difficult to get out of that mindset post transplant when you still need to maintain daily meds but no where near as sick as you were. However when trying new drugs, feeling sick or rushing to the loo, dizzy or sleepy, you start reverting back to that. Cancelling plans, spending lots of time calling or visiting hospitals or having tests. It's easy to get sucked into the bubble again. I felt like this and didn't realise it straight away. I was really down, in pain, mentally and physically exhausted.
It was only a few weeks ago that I realised how I was feeling and why, then I was able to take that mental step back; away from the confusion and emotion at the heart of everything, and look at the situation from a distance.
I saw my Pyschologist at my clinic. I didn't have anything specific to discuss but I think I just wanted to run through things out loud with him. I explained about the situation I'd got to and how I'd stepped away from it. Only then did I realise I needed to take control back of my life. I wanted to try and make things the best they could be, but sometimes you have to realise that can't happen. We all knew that I was pretty much at the end of things to try for pain and fatigue. There are no easy answers or a never ending stream of drugs or treatments to try. I could carry on with the side effects and constant hospital involvement but my quality of life will suffer. Do I really want to waste more precious time? Or do I to the best of my ability, go out and live with these problems, working round them and modifying to accommodate them? After all this time, rather than a drive to be perfect, I feel an acceptance. I will never be exactly as I want to be. My body has endured a lot and it suffers with fatigue and pain. Some days I have to give into them and change plans or stay in bed, but other times I can work with it rather than miss out or spend copius amounts of time at the hospital.
This is a huge deal for me as both my consultant and psych agreed separately.
That's not to say acceptance is an easy thing. Knowing this is how it is doesn't mean I don't long for more like anyone else. I see people walk along with no pain, and I get jealous. I see people lazing around when they have more energy than I have, and I want to scream at them to go and live! They don't realise what a novelty these things would be for me. They don't spare a thought for how lucky they are.
In other areas I know I'll probably never have kids. It's a risk/ big strain on my body/ my life expectancy is reduced. That does not in any way make it easier to accept. I love kids and there are times I could cry (and do) at the fact that it's unlikely I'll have a family of my own. The typical husband, children, home, job, will never be mine and some days that tears me up inside. I can't imagine there would be a guy who would want to take on all my health issues and the fact they wouldn't be a dad, I would love to get married some day but would that be fair to marry someone I love then statistically not be around to live married life and put them through all that heartbreak of losing their partner?
Acceptance is not a sudden lightbulb moment where you don't care about your problems or limitations anymore. It's more a calm, acceptance that you can spend all of your time railing against something that is unlikely to ever change, or you can find another way. It's not giving up. It's not being happy about your situation. For me it's about taking back control and being able to choose my own path.