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...

Lying...

I've titled this post 'lying' for two reasons and meanings... firstly I am lying in bed, having been off work all week with full blown horrid flu! I've not had flu before and I don't ever want it again.  The first signs I had caught a virus were a few weeks ago when, out of the blue, after a routine blood test, my platelets had dropped by half down to 75.  It was a shock and I was very worried.  I constantly am on edge when I have blood tests, probably always will be, as I always think someone is going to tell me I am illl again.  I worry about it more now as I seriously don't think I could go through it all again.

Anyway, virus cells showed up in my blood so my doctors weren't worried and put it down to that (I might add all my other bloods were great still).  I then felt really poorly last weekend, sick, shivery, sweating, temperature and went to the hospital first thing Monday morning.  They did lots of bloods and tests and confirmed flu and my pleatelets dropped again to 21.  I'm taking Tamiflu tablets and today i'm finally starting to feel human again plus my platelets have risen to 66 which can only be a good thing.

I said at the beginning that this was called 'lying' for two reasons and the second is because I have been lying....big time lying to you, myself, everyone....  I haven't done it on purpose as such, more to try and make things ok.

Basically I am not ok, or have not been ok.  I have been struggling for a long time with my mood, how I feel, crying a lot, not having the motivation or energy to go out, do anything, work has been a struggle and pretty much the only thing I've managed to keep doing.

I was diagnosed with depression when I was in hospital during the second transplant.  I had been in hospital so many months by then, was very poorly and the first transplant had failed.  I got to a point where I used to think that dying would be better.  I'd lay there and think that if I was dead, I wouldn't hurt anymore, I wouldn't need to worry anymore and none of it would matter anymore.  Don't get me wrong, although I was thinking like this, I never actually thought about killing myself, the actual act or how to do it.  I just felt total nothingness and despair, like I was in a black hole.

I can honestly say that the past few months I've been back to that black hole.  Slightly different this time, but thinking why did I go through all that pain and treatment to live the life I've got now.  I cried every day pretty much, so deeply unhappy.  I was so hopeful when my second transplant worked and I got over that and went back to work etc.... A massive set back has been the avascular necrosis in my hips.  It has stopped my life really.  My mum keeps telling me it is only temporary and I just need to get over this last hurdle, but I'm sick of getting over hurdles, I'm sick of being strong all the time, I don't know how much strength I have left.  Then Rich and I splitting up has just compounded those feelings.  When you are with someone you love and who apparently loves you, you feel invincible.  I felt I could face anything with him by my side.  Then all of a sudden I was on my own.  Yes, I know I have my friends and family, wonderful they are too! But they have their own busy lives....it's not the same...you I know what I mean.  I have found myself living and working (in my new job from home) on my own and becoming more and more lonely, down about my leg pain, frustration with mobility with confinement more and more to the home, as well as so deeply sad and trying to heal my broken heart.

I have been on a downward spiral of depression for a few months and it all came to a head on Monday.  My platelets dropping, living on this constant knife edge of whether blood results are ok or not, and then being poorly caused me to have a kind of break down I think.  I was a wreck on Monday, but as I was at the hospital it meant that I couldn't hide it.  I had been crying constantly all weekend, whilst being ill, I couldn't get out of bed, motivate myself, didn't want to speak to anyone.  At the hospital when I spoke to the nurses and doctors about being ill that weekend, it just all came out which has helped me immensely.  I know it has not gone away but I now feel able to deal with it again.

I chatted with the Macmillan Nurse specialist and she was telling me it is really common to feel like this after treatment such as mine.  You have this inner pressure, and outer from work etc... To be normal again, to live life because you've had this second chance and it could have so easily been different.  Yet it is so hard to go back to normality when you've been through something so traumatic and life changing.  I question that I am wasting my life, going to work etc... Even though I like my job, but what else can I do, I have ideas but, well for now, they need to go on hold.  I need to accept that.   I am seeing a counsellor again and to be honest, just finally admitting it properly has helped me so much.   Depression is a strange thing, people think they can talk you out of it, tell you everything is ok, life is good, take you out, make you happy, but it is deep rooted in your mind.  Minds are complicated funny things.

I can't really even believe the amount of bad luck I've had over the past few years, surely now I deserve some happiness, I don't think I deserved the bad stuff in the first place but I think I've done my bit now, it's time I was able to live and be happy.  I don't ask for much, just a simple life and to be happy. I know I've got a journey to go on yet but I am hopeful, I can now see that glimmer of the other side and I can now understand how strong I have been, how much I have pulled myself through and that is an immensely positive thing. 

I feel I can actually honestly say now that I will not let this beat me.  I am a strong person and I will be ok.  I am finding the strength for these last hurdles with my mind and my hip ops so I can truly live my second chance at life.

Update...long overdue!

Well it has been a long time, a year in fact, since I last wrote on my blog.  I suppose this is a good thing because it means life has been getting in the way!

I've just read my last post from January 2013 and it was very positive, I was getting my life back on track and my bloods were doing really well.  So here is an update from there on this roller coaster that is my transplant journey....

In January 2013 I was all set to return to work, having been off for so many months, however my body was not going to let that be a smooth process...I had a reactivation of my nemesis, the CMV virus.  My bloods were much stronger at this point but it did mean I had to delay going back to work for a month because of needing intravenous drugs every 12 hours in hospital.  I didn't want to stay in so went to Npton General twice a day for a couple of weeks.  It was very draining and disappointing. However I successful got over that and returned to work in February 2013'

It was wonderful to be back at work as fundraiser for Northants, Leicestershire and Rutland at Marie Curie Cancer Care  although it had changed a lot with staff changes etc... But in essence I was so happy to be back.  I did unfortunately encounter a tough time, was overlooked by management because I'd been off sick and I felt very discriminated against.  Anyway there is no point going on about that here, it is done and dusted.  I felt it was time for me to move on from there and I successfully got the role of Regional Fundraiser covering East Midlands for Teenage Cancer Trust.  I absolutely love my job and the charity is phenomenal, I've been in the role nearly 6 months now.

So that is a positive point.... However the medical problems did not stop unfortunately... I mentioned in my last blog post that I had pains in my legs.  I was eventually diagnosed with Avascular Necrosis, which is basically the death of the bone.  The steroids I was on, which were effectively keeping me alive between the two transplants, caused it.  They can stop the blood supply to the bone, mostly in hips and knees, and cause the bone to kind of die.  It has affected both my hips and my knees a little.

I have seen an orthopaedic surgeon and had MRI scans etc... They show that both my hip bones have collapsed and are in effect broken.  I have to walk with crutches and it is extremely painful so I am on lots of morphine, although this makes me sleepy so can't take as much as I need.  Hence the constant pain.  It does get me down sometimes but I am still so very grateful to be alive.

I do need both hips replacing but the surgeon wanted to wait a few years as I am young.  You can only have 2 new hips on each leg and they only last 10-15years each.  However after lots of thinking I have decided I would rather be in a wheelchair at the age of 60 and mobile now!  My transplant consultant has been very supportive and has asked the ortho surgeon to see me again soon and fast track the procedure on my right hip ( that is the worst), so we will see what happens.

It is another hurdle to climb but I don't see it as bad.  It is just my mobility, I don't say that lightly, but  the transplant was so much bigger.  I know this will be tough but at least I am alive,

Recently, in October I had more stress and upset when my partner and I broke up, which was out of the blue and so heartbreaking given all we had been through. But l have this second chance at life so I need to live it as best I can and that is what I am trying to do now.

I must mention that I am astounded by the number of people all over the world who have read my blog and contacted me.  I hope my rumblings help someone.  Everyone's journeys are different but if I can help one person it is worthwhile....so watch this space for the next random instalment.  I think I am due some good luck now so hopefully 2014 will be the start of that.

My wonderful friends and family have been amazing as every and carry me through the bad times.  I will forever be indebted to them.