How Am I Doing?

I am constantly asked, "How are you doing?". It is so difficult to answer. Everyone who I have seen this week has said, "How Are You?" I'm pleased that people are asking, it means that they care, to let them in my house I know I can trust them to take what I say as the truth. They are asking because they want to know, they are maybe noticing a difference and want me to confirm it!
As someone who has been ill for so long I have never been able to say what I do now. Always I said, I'm coping, I'm surviving, I'm happy. But maybe not really believe it myself- it was more a defence mechanism to avoid the cold, hard truth. I knew I should be feeling those things and sometimes I was, but it was so hard to force myself into that frame of mind. After all, I was ill, never to recover unless some miracle came about in immune system research 10 or 15 years down the line. I had always imagined that recovery was a long way off; out of my reach and my doctors agreed.

So how am I?
I am believing in recovery. I am feeling good about myself. I am happy. My husband is very supportive and I can bounce ideas back and forth with him. The internet has given me so much, some websites are ideal for printing off the text to read later, in a larger font size. Also I now have a list of books to read. These biographies and self-help books (yes I admit it I am reading self-help books!- I never imagined I would go there!) are ideal reading with my concentration and memory. They give me a chance to dip in and out, I have different books for different occasions, suitable for different levels of tiredness. They might each take me a few months, but the intention and confidence is there.
Physically, moving around and daily living, I have improved slightly over the last three months. Looking back six months I am improved very much. I am getting dressed every day, even for just a few hours. 3-4 days a week into yoga pants and top with cardigan, other days into comfortable linen trousers or skirt to leave the house (this is obviously a lot easier now that the weather has improved and I need less thought about layers all over my body!).  I can help around the house a little, I'm finding ways around using the kitchen, gadgets and pre-prepared food from the shops. A  bag of chopped salmon out of the freezer thrown in the frying pan with cherry tomatoes, left for a few minutes before turning over, then served with a ready to eat bag of salad is plain, but tasty, slightly more expensive than organising it from scratch, but it means I can actually achieve the ambition of fending for myself. I am focusing on pastimes that I enjoy. Knitting a little, 3 or 4 times a week if my arms let me. Using the internet to bombard my knowledge with extra tips on recovery. Yoga and meditation. Sitting in the garden, with or without a magazine or book. I talk to friends on the phone somedays, I can talk to my Mum for an hour, also my sister. I am myself with them and have to make no compromises. A couple of my friends are like that too and I can find that really helpful for 20 minutes. I am usually in bed most afternoons if the garden isn't warm enough(or it's pouring with rain!). Every day I am usually able to find what my body wants and answer the suggestion, without frustration and I am noticing little things saying "you're doing the right thing".

Audio Books

I mentioned yesterday about listening to Harry Potter and The Chamber of Secrets. Audio books have kept me going for years. Sometimes they are live, sitting on my sofa- my Dad used to read to me every lunchtime. We would watch Working Lunch together- oh yes I had sorted my self out with a pension from the age of 25 thanks to the gurus on there- while eating our lunch and then he would sit and read to me. We went through Treasure Island, 39 Steps, Robinson Crusoe, lots of classics. Also the Harry Potter books when they first appeared (my husband continued with that tradition when the final few were published).
The difficulties, of reading to myself, were varied over the years. Focusing on the page was sometimes difficult. Dizziness would result in me trying to read with one eye open and one eye closed. Nausea would also set in quite quickly after 15-20 minutes. The biggest problems, which are also occurrent now are the lack of short and long term memory, and poor concentration. I can read 3 pages and realise that I have taken in only one paragraph, constantly turning back pages and getting nowhere fast isn't particularly helpful. The tiredness can cause such bad concentration that I might need to give up for a couple of weeks- by which time I have forgotten what I have read so far! My cognitive ability is improving but I still have to see what happens, some days are better than others and non-fiction is easier to read as are books of letters or short chapters and children's books
My husband reads to me now most nights before we turn out the light. It is a great way for me to keep in touch with literature and remember some of my favourites. With such a poor memory I can enjoy the same book a couple of years apart and it will seem completely new to me. We switch between drama and comedy, sci-fi and classic, also reading a lot of children's books for a gentle interlude occasionally, we have gone through the whole Narnia series and also Anne of Green Gables. Every Christmas we come back to a seasonal tale- last year it was 101 Dalmatians, the year before The Box of Delights and before that Harry Potter, preceded by Narnia. (I can remember that but very little of the contents of the books!)
Listening to reading also came in CD and cassette form. Mum would look out for free ones on the newspaper and I bought a few magazines when a series came out of Classic stories. My favourites became Tess Of The D'Urbervilles, Rebecca and Jane Eyre. The incidental music and the tone of the voices became a familiar comfort after a while and if I heard nothing else the background sound of it would lull me to sleep on difficult nights.
I'm listening to Radio 4 Extra a lot, which has book readings and dramatisations- usefully in 15 minute chunks and also available for 7 days on the internet radio via iPlayer. I have also found a couple of websites which have unabridged downloadable readings of books which are in the public domain. Most recently I have found The Secret Garden by Frances Hodgson Burnett. A childhood favourite, I was over the moon to have a new voice read it to me like Jackanory all over again! These times are more for comfort and familiarity than study or great significance. Books just give me something to look forward to, to see the time pass, another daily foothold which has nothing absolutely to do with me being ill.