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.
I had a lovely day in London planned yesterday. I adore London I think it's amazing for so many reasons and it will feature heavily on this blog. If I go out it's usually to London rather than locally to me because my friends are based there and there's so much to do. I set off in a horrendous mood because the steroid effects are literally like riding a roller coaster most days and the last few worse than others. Seriously the most horrible pit of hell mood that cannot be lifted without incredible amounts of effort and sometimes not even then. I tried to focus on the beautiful Autumn sunshine that we were blessed with and tried not to let myself get dragged any further into my own head.
By the time I met my friend for lunch I was feeling a bit better mentally but by then my pain level was creeping up. Insomnia also seems to have a rather devastating effect on my body post transplant. If I don't get enough sleep I can feel breathless, dizzy, unsteady etc. we had a lovely thai lunch and then walked the 5 mins to the theatre to watch our matinee.
However despite only being out a few hours and mainly sitting during that time my pain had got so bad I was really suffering. I tried to stretch, nothing, I'd taken painkillers, nothing. My back was so tight and burning and unusually this pain was all through my chest too. To cut a long story short I ended up crying on the train home because I was so uncomfortable. My lovely day had been ruined and this blog that was going to show my love for London and all the little things that make it so wonderful seems to have turned into a moan fest :(
I wasn't going to even bother blogging, but this is the reality for me right now. Every time I feel I get a little settled in my mind and body something rocks up and sends everything reeling again. The steroids are definitely helping with the fatigue. I am also getting better at hopping on and off public transport to save myself using up my precious energy. But that few weeks of euphoria of finally being pain free and less fatigued have ended and it's hard to remember that these sudden changes in mood are down to feeling bogged down by pain again. The lightness of a few weeks ago has been replaced by the old heaviness again. I saw the pain team last week and was initially happy with my consultation but after a few days of struggling against the pain again I will be ringing to talk over options again as I really need some more support with this and I don't think I was clear enough in what I needed.
It feels like there are so many appointments, new people and tests to do, I felt I was moving forward and now I've stopped again.
Being in such bad pain is not something I feel I can settle with. I got home yesterday and had a hot bath, more pain relief, my TENS machine, mum rubbed deep heat into my back, I had hot water bottles and just sat all evening in bed but nothing could take it down much by then. Everyone is pleased that I still manage to make plans and 'live my life' despite the pain, but really yesterday's agony was not worth the few hours I was out of the house. Pain is such a far reaching thing too, creeping into everything and causing problems. So often I have plans made and things organised that I cancel when I am bad like this but again, it's part of the cycle of depression, feeling held back, low mood and self esteem so I'm doing my best to push through as best I can, while also knowing that I don't deserve this and won't be simply accepting this will be my life.
So today we are slightly defeated if I'm honest, but I'm gearing up to hopefully start the fight ( I really don't want to keep fighting ) next week. For now, pyjamas, hot water bottles, tea and HARRY potter Dvd (because it's the only dvd for when you're poorly).