Wednesday morning and I feel rubbish again, flushing, headache, jaw pain, diarrhoea and I'm very nauseous. I continue with the drug. I can't manage breakfast, even dream of drinking a cup of tea, but I manage some lunch. Sarah and Rob were with me and by early afternoon, they were running to and fro with sick buckets and I was back in bed in a terrible state again. Later on in the day Rob rang the specialist nurse and after she spoke to the consultant, I was told to stop taking the Sildenafil. I was disappointed at myself again, now I hadn't even managed to have the Sildenafil, I hadn't made the full Epopostrenol increase and I was worried about the state of my PH.
Thursday morning I was managing to eat again, only bits of what I fancied and I managed a few small drinks of orange squash. I couldn't face some things, even plain water as I associated them with the sickness. I still had headache and jaw pain, nausea and diarrhoea and I was flushing badly and if not flushing my skin was blotchy with red patches. At this point I have to say I thought, 'what have I had done to me?' Every time I had been in hospital, my PH was getting sorted, but at a price.
This time it was not a quick recovery and back to normal - well what was normal for me - it was a very gradual process as the side effects lessened with time, but sadly only faded to a certain point. Having only just got over my December incident, I was now trying to get over the next and it was becoming mentally and physically draining. Events had happened so quickly since summer, one thing after another, after another and it had taken its toll. Mornings seemed difficult with nausea and my tummy feeling unsettled, tiredness was a struggle and there was still the Epopostrenol to make twice a day, every day, diuretics to deal with every morning. It soon became a routine to try and take it easy in the mornings, get the unsettled tummy out of the way and the constant 'weeing for England', as I had christened it. By lunchtime, I seemed to get more settled, so I was able to venture out and have lunch for a treat or meet friends in the afternoon for tea as I felt even better by the the afternoon. Rob had been given three months off work at this point, so he could be with me to help get me to better health. We began to plan outings together and aimed to go back to our cottage in the Lakes in April and I was aiming that I would stay well for my fiftieth birthday.All in all, I just really appreciated being able to sit at home and watch the birds through the conservatory window and watch the daffodils coming out. Spring was turning out to be beautiful.
I often thought about my friend and how we had both been brought back to hospital in an emergency and how I had been the lucky one, who had been able to come home. I couldn't make sense of her death, I don't think you can do, but I could only conclude that there must have been some reason that it was better that she did not have to battle with PH any more. I'm a great believer that things always happen for reason, and that some good things can always come out of bad things. This one was a difficult one, but enabled me to be able to count my own blessings and become positive in the thought that I had been given another chance. Another chance for precious time with Rob, Sarah and Rose and being with friends that matter.
My friends were another important factor in my recovery and well being and there were certain ones that really helped during this period, coming round for a cuppa to cheer me up, bringing the biscuits and cake (and lots of flowers) and picking me up, so I could join them for lunch or afternoon tea.
I was looking forward to having my new summerhouse built in the garden, which would be happening in early April and Rob and I began a plan to improve the garden with some more planting and also to start our own little grow your own plot! These were all simple and lovely things to look forward to. It is a bit of a cliche now that family and friends and the simple things in life are all that matters when you face serious illness, but one not be taken lightly, its wanting those simple things that you may have taken for granted in your busy life that make you want to keep up the fight and win. The big things we tend to stress over such as work and money issues are simply irrelevant and fade into complete insignificance when it really comes down to it.
You simply do not want to leave your loved ones and all the beautiful nature that we have around us and inspired by this, it is worth every minute of those dark times, however tough it gets. I am full of determination to get back on with my life, whatever the limitations may be.
I am happy to still be alive.
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