Absence....

Thank you for all those who have contacted me wondering if Paul and I are ok. I am sorry for my absence. I have always wanted this to be a place where I honestly say what is happening and how I am feeling. Recently I have been really struggling. Paul has recovered from his operation very well. Today he returns to work. For me this has just highlighted the fact that I am not getting better. That may seem a rather strange comparison, as of course he was going to get better and I am delighted  that he has. People have been kindly asking how he is and we have been able to say that he is improving every day. Then people turn to asking me,as they have over the last 5 years and mostly in the past I have been able to say - I am improving, except for the last 9 months since I started the methotrexate and ended up in hospital. These 9 months have been so hard. It has been one thing after the other - mostly drug related with pain thrown in. Obviously there have been wonderful times - Chloe and Ed's' wedding being the highlight. But I can no longer say I am improving. I have reached the new, new normal and that includes slow decline. I have had to accept recently that there are many, many things that I can no longer do and that I may never be able to do again. I have always felt that being reliable was very important and I am not reliable. I have good and bad days and unfortunately I can't tell when they will be. This means that I can't take on any role where I need to be depended on to carry out that role. This is hard to accept. I have to rest daily and I can no longer do evenings. I have to take a cushion to places to support my back and carry a sick bag just in case! I cannot walk very far without pain and that restricts what we can do. This is hard to write as I feel like I am moaning and groaning. But I think this is the truth about chronic diseases and the life that people lead who have them. It is hard to watch other people getting on with their lives and not to feel sad. The main reason for all of this is the return of the autoimmune diseases and the side effects of the drugs I have taken to try and control them. Having come off one of the drugs the  pain is creeping back into my joints.
All of this said - I am sad but not despairing. I am aware that this sounds like I am looking for sympathy but that is not the case. I just want to be honest about this journey. As I have said often before it is so, so easy to feel poor me! As if there is some unfairness at work but that is not the case. This is my journey - this is the plan and my part is to trust that the creator of the world is here with me. Sometimes I am clinging on by my finger nails but he is still there holding my hand. There is still joy every day to be found all around me. That means taking my eyes off my own situation and looking for it. It is my choice!
So that is where I am - I am sorry that I can't say I am improving every day. I know that is what people want to hear.  They don't want to hear yet again about what is hurting today! I am learning - very slowly - to take each day as it comes. For a planner that is very hard! Maybe that is my new lesson.
This weekend - all being well we are going to see Chloe and Ed's new flat in Kingston. Chloe and Ed are coming to pick up some more of their things which are here and then will take me back to Kingston with them. The prudential Ride London is passing by the end of their road so we are hoping to wave at the cyclists on Sunday.
This week I have my annual checkup with oncology, it doesn't seem a year since I last had an appointment. My blood tests yesterday were all stable which is good. Despite all that this year has thrown at me my kidneys have toddled along very nicely.
Thank you for your continued support - even in this struggle.