A Beautiful June 2011

Rob had got himself back to work He found his new role challenging in different ways compared to his last role and it was demanding in time and commitment. I think he found it hard to separate himself from the ongoing saga at home with me and the total dedication needed to get a demanding job done, however he was giving it his best shot and things were going quite well. He was very concerned about the transplant issue hanging over us and really, after the rollercoaster last twelve months, it still felt like a delicate situation. He had hated having to go back to work on the day I was admitted back into hospital, but had no choice really, we had to start getting on with our lives or at least trying for the time being before events took over again if they did.

It was very difficult for me that first week when I came out of hospital, I missed him dreadfully and the mix of Epopostrenol and Sildenafil along with everything else began to take its toll again, the side effects seemed more heightened again. Despite this, I began enjoying the period of relative stability that I was in and started learning to live with the side effects of my drugs.

I found strategies around the problems caused by my drugs; restful mornings and any plans for the day taking place only from lunchtime onwards seemed the answer. I always seemed to perk up after lunch. When I used to teach, the children used to buy me lovely bath time presents and I had accumulated quite a lot of bubble bath, lotions and potions. I started using all these lovely presents to make what I called the 'bath time palaver' more of a treat than an endurance. Thank you  to all my lovely children, you don't know how much you helped me! If I needed to go out at night, I would need a sleep in the afternoon to be able to cope and usually just one outing a day was enough to manage. I often use the quiet mornings for my guilty pleasures of facebook, emailing, texting and reading the papers, and now don't need an excuse to sit and read a good book and do little else!

The spring weather continued into early summer and the garden was stunning and Rob worked really hard at weekends to make it lovely for me. I also tried to potter about around it and try and do easy lightweight bits I could manage. Gardening had been a passion of mine before my illness. I was meeting friends for tea and lunch in the sunshine, many of my friends happened to have cut their hours to part time or have retired altogether, which had been a bonus for me in all of this, they were around a lot and really supported me. All in all, life did not feel that bad again, and I was actually really enjoying being at home, life was pretty perfect had it not been for the illness that lingered over me, but I knew compared to other people who are seriously sick too, I was still very lucky to be enjoying all this and enjoyed the good moments to the full.

I think as a family we were beginning to learn to live with my illness and adjust to its ups and downs and I was becoming a seasoned PHer! The only trouble is that when you are ill with no cure, it never leaves you and you go to bed with it, sleep with it, wake up to it and live every day with it. I think feelings you go through are probably similar to the feelings of bereavement. There is shock, anger, desperation and great sadness and sorrow. All the plans you have for the future are blown out of the window and you know you will have to follow a very different route to what you thought may happen. Somehow, if you are lucky like me, you manage to find an uneasy path where you muddle a way through, although you never know where it is going. You find ways to cope and strategies to help you manage so you can go out and live life to the fullest you can achieve within your limitations. The short term future is the one to focus on, taking each step as it comes and making the most of each day. Thinking long term any more is a difficulty as goodness knows what will happen, there are too many 'what ifs' and unknowns. It is hard when you have been told your life span will be shortened. If you do start thinking longer term, it is best to think in a positive way and imagine that all is going to work out well for you, you are going to be the one who defeats all the odds. There is no alternative really, otherwise you will start to slip down what I call 'the black hole' and I stubbornly refuse to do that. Really that's what most of us do anyway, if we haven't been struck by illness at all, we make plans for the future and think we are going to live until we are about ninety without too much bother, these thoughts are just more heightened and focused when you find out you are ill.

These future matters come with some bonuses though: I'm not going to end up being ninety and all alone in a nursing home; I don't have to worry too much about the increase in pension age, especially being a woman and now having to wait until I'm sixty eight, with threats of this ever increasing, I've been given my private pensions now; I don't have to worry about my teacher's pension being devalued any more and about striking, as I've already got it and got quite a good deal; I don't even have to go to work any more and definitely wont be doing if I get better, that long term plan is definitely to catch up on even more good times and fun; I don't have to drive in the snow and worry about getting to and from work and getting stuck in it; I can visit places that are busy at weekends when they are nice and quiet during the week; I can take advantage of all the week day meal deals offered in pubs at lunchtime; I don't get plagued with that Monday morning feeling any more, everyday is a weekend; I can have a pyjama day if I want to and nobody will blink an eye, because I need it; I have lots of time for indulging in simple pleasures such as watching the birds and flowers in the garden and reading endless books; I'm now a blue badge holder and I can park much more easily, my family and friends just love taking me with them so they can park!  


All in all, there are some advantages to being ill and I'm making most of them all at the moment when and while I can! You have to look on the bright side of things amidst all the disappointment!