I've had an eventful few weeks so think I'm going to do a few separate posts to fit it all in properly.
Last time I posted I was struggling quite badly. The day after I had a nice, spur of the moment outing, we managed to get tickets to the Taste of Christmas fair at the Excel center which is basically an exhibition of Christmassy things (mainly food). it was touch and go if I wouls be feeling up to going but we decided to go and stay for as long as I could manage. It was quite crowded when we got there and I wasn't enjoying it as being in the wheelchair with crowds of people pressing in on you is quite intimidating. Soon though, it started to thin out and it was really lovely to walk round. There was loads of smaples (had quite a few alchol tasters!) and a generally festive atmosphere, the attendants were really helpful and friendly and one stall holder came up and told me I was beautiful! Doesn't get better than that ;) We bought a few bits and pieces including some delicious mulled cider which I can't wait to have on Christmas eve. I expended a lot of energy and suffered for it later but it was worth it to do something different and have a treat.
Things have remained quite hard to cope with as mentioned in my last post. Sleeping has become a huge problem. In the last few weeks I've had about 2 proper nights sleep, and my body has not been coping well. One night I literally stayed awake from 11.30pm till 6.30am, consquently I had to stay in bed all day because I couldn't even get round the house as I was so weak. Every other night I have laid awake until 3-4am which again, over time makes it very hard to get through each day in my current state of health. I can't believe how hard it's hit me. My hospital gave me some sedating anti histimines a few weeks ago but they didnt help at all, then I was given mild sleeping tablets which gave me a terrible headache without helping my sleep so I stopped those. They have to be very careful what they give me as my lung function can go too low if I am very sedated. At this point I was literally at my wits end and felt pretty horrific. I brought up the idea of palliative care with my CF team and they have now referred me to my local hospice for extra care.
Now, obviously recieving help from a hospice has certain connotations. From my point of view I don't care who gives me the help so long as I am getting what I need to keep me as comfortable and as happy as possible. My pain and insomnia are ongoing problems that seriously effect day-to-day life. My mum and family on the other hand were quite scared at the thought of me going to a hospice because of the surrounding assumptions that you go there when you are at the end of your life and nothing more can be done. We heard from the hospice very quickly which was reassuring (things usually take a while to put in place) and they were very friendly. Mum spoke to them for a while and feels a lot happier about their involvement now. I'm happy that she's happy.
For me the hospice is a bit of a no brainer. My cf team specialise in CF,specifically lung problems. However Cf is so much more complex than that, it has so many other offshoot problems and when you get to the advanced stages like I have you get other problems such as pain etc which are exacerbated by lack of mobility. For a hospice it's these secondary symptoms that are their specialist field and they will be better placed to advise me with these aspects. It's obvious to me that without a transplant I inevitably will die, those are the facts that we all know. Going to a hospice doesn't mean they have given up on getting me a transplant, simply that things have cropped up since I went on the list that can be relieved a bit by hospice staff expertise. Also having a local team will be very handy. They can liase between myself and my CF care team as I understand it too. I think it's a positive move and gives us some much needed support.
I have already met the complimentary therapy team and the lady who came home to me was lovely. She gave me an aromatherapy massage which was very relaxing (the hope is with regular massages the tension will ease slightly in my back muscles) and a reiki session which I am less sure about but still quite relaxing. My next seesion is after Christmas and I will hopefully be meeting the triage nurse team at some point soon too. They are the people who will help with pain, insomnia etc medication and are always around to speak to so again I am hopeful that things might not get so out of proportion in the future.