Thursday 26 June 2014

groundhog day...

I said to my psychologist the other day that I felt every day was like groundhog day.  I feel I am treading water, trying to get through quicksand or walking through glue... I hate that I have had to give up work, I cannot walk more than a couple of metres, cannot move without pain.  I feel so very confined physically and mentally.  She discussed this with me and actually reminded me that yes, I am confined to a certain extent, certainly from a mobility & pain point of view but not every day is the same.  I do have moments of happiness...I might see my mum or family, have a natter with a friend, go out for dinner with Rich or sit in the garden reading a book.  I am not doing the things I want to do because of the problems with my hips but I need to make the best out of what I can do.  I like how she put that.

I try every day now to make sure I get up out of bed and get washed and dressed as best I can.  it is difficult as I cannot get in my bath now, I cannot lift my legs up and can't reach down so putting trousers on and shoes is hard.  I do my best though, i try and do something every day.  That something is quite difficult for me.  The pain is unbearable, the morphine for the pain makes me drowsy and so very sleep and my mood is so variable because of everything that has happened...but...I do my best.  If I can succeed in doing just one thing like some sewing, reading a book, making a cake, and not laying in bed which is quite frankly what i want to do and what feels best, then I make each day different and keep going.

I am trying, with the help of my psychologist, to make these little daily activities or tasks meaningful.  Can I read a book that will teach me something? or make something to sell etc...  I need to take each day as it comes, one day at a time right now.  It is uncertain when my hip replacement operations will be done and how well I will recover, although a glimmer of light is there as I had my pre-op assessment done this week and it looks like the first operations may be within about a month.  I cannot allow myself to get hopeful yet though or think about the future properly because I cannot take the disappointment, stress and upset if it all changes or goes wrong again.

That is the world I live in now, it's all a bit...sort of...nothingness... I get upset because I cannot help myself thinking of the future and what I want, and I am not talking big dreams here, I talking basic things like, walking, working, going out without the wheelchair!  I also am so worried that once (even saying that scares me!) these operations are done and hopefully all ok and I get mobility back as best I can, that I will not be any better.  I think people around me think that once I can walk again that is it, I will be better.  I am worried about my mind.  My Psychologist says we cannot move on to think about or tackle that issue until these hip operations are done and I understand that.  I know that in that short period after my second successful transplant, before my hips gave way, I was struggling.  Struggling with the notion that I had this second chance at life and I should be so grateful and want to live it to the full, be happy to be alive.  I was happy to be alive but I had changed and I couldn't get around my thoughts that I had gone through so much hurt, illness, pain to live this life of spending all of it in a job, going to work every day, coming home, making dinner, going to bed, doing it all over again the next day, trying to enjoy weekends, it is all so mundane, so regimented and bit meaningless.  It is hard to explain but I think that after these operations, that is my next battle.

For now, I am taking each day as it comes as best I can.  I can feel I am getting better emotionally.  I know it has been helped by being back with Rich.  I am so happy with him, we are so happy.  We deserve to be happy now and move forward in our lives together as together we have both been on this hard journey over the past 3 years.  It has definitely helped to talk to my psychologist (she is funded by Macmillan I might add...another fantastic service offered by that charity!).

My next hurdle is the right total hip replacement operation which will be happening in the next month or so... what happens after that I do not know...


2 comments:

  1. so glad to read you're back together with Rich - having a supportive partner makes such a difference - I'm crossing my fingers for your hip op to be a roaring success. Glad to see you're baking again too. A bit of cake always lifts the spirits! Don't say you won't be able to cope with relapses or failed ops - you wouldn't have thought yourself capable of dealing with all you've been through before it happened, would you? You've surely come out it a stronger person, so you'll be even more able to deal with bad stuff than you used to be. I listened to a lot of radio 4 when I was in hospital as I couldn't have TV. Have you thought about going on the radio? - there's so little understanding about bmts - one of my friends thought leukaemia only affected children (probably because all the appeals for donors use kids as examples). The newsreader Rory Morrison died after a bmt last year, but I didn't hear anything about it at the time. Your blog has really touched me and I feel you could do some good by telling your story to a wider audience. Me again, Rosey.

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  2. Nice it is good that you are sharing your Bone Marrow Transplant ,sothat it can be helpful for anyone in future.

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