Menopause

When you know something already, it's obvious to you for so long but Then when someone confirms that and suddenly it's like your really hearing it for the first time. The meaning sinks in and suddenly a little bit of sadness fills your heart.

My ovaries are very nearly completely shut down, I am going through menopause.

I never wanted kids, I always knew that with cf it's not really a possibility. I was always to ill to even think that there would be a time in my life that they would fit in. Knowing I would die young I didn't want to have a child to leave it through its childhood. Having a transplant I suppose that can change things slightly, you know you have a new life line, there's the option of surrogacy, you now have energy to look after a child, run around and play games but still I know my time on this earth is not a normal life span and chronic rejection could set in at any time, proved to me last year when I was diagnosed at approximately 2 years post my first transplant and declined rapidly. Yes I was so lucky to get my 2nd transplant but I still don't know how long this will last and therefor wouldn't be willing to risk having a child to become ill and leave my husband caring for me whilst I die and a baby. Don't get me wrong I have seen my friends post transplant have children and I'm so happy and proud of them it's was some calling deep within for them, there maternal instinct, for me I just don't have enough of that to have a baby with all those risks.

But still sometimes I think if I had a normal life, I would have a child. If I were normal I could wait till I was in my 30ies when I have lived my youth for me and followed my dreams of a successful career, one that I would be well into by now because I wouldn't have had all these other set backs in life. I could then have a child and devote the rest of my life to them.

So that is that, I am not that girl in a normal life and never will be, not that I don't love my life I really do. If by some mirical I get to lead a long life and live into my 50ies then I will look back and feel a pang of regret that I never got to have a child and now all options have forever been taken away. It's final. I have no choice I cannot change my mind and have a child.

The sadness I felt when the menopause was confirmed wasn't just for the child I would never have, there was a whole mix of emotions, suddenly I realise that part of my youth has gone and that's not just mentally, not like just a feeling, physically part of my youth has been taken away from me. My mother had a early menopause, but by early I mean 40ies hers by all accounts seemed quit simple, she complained and still does of hot flushes. So the thought of menopause didn't really frighten me, but then I started researching and realised a lot of my current problems seem to comedown to this. A huge sense of fatigue, that was contributed to by other health factors that are now sorted but the fatigue is still there, tho lessened slightly. It makes me feel so old. It makes me feel less feminine, I am now officially unable to do the thing that makes us women, have children.

Then there's the mood changes, I haven't really told many people but I guess now is as good as time as any. I am on anti depressants. I started them a few weeks ago due to depression and anxiety. There are things that have upset me which I don't want to go into and I guess with my hormones being out of whack it's lead me to feel paralysed inside, a sense of dragging and all momentum has gone. I'm fixated on a few things and really need to be free of them finally, events in my life as well as old demons I have carried around for years. My anxiety comes on suddenly for no reason, I'll just be sitting there and feel overwhelmed, trapped like I can't get out, I don't know what I'm trying to get out of, my own mind, my own body. It's a overwhelming horrid feeling that I can only remember feeling in itu with my first transplant and when I have been on extremely high doses of prednisalone which cause anxiety. The antidepressant are helping but I still lack the motivation I had before, I just feel stuck. Which makes me feel even sadder because I so want to be out enjoying every moment as I do love my life, just right now I feel I've almost forgot how to.

There are many other side affects or symptoms of menopause, which I am experiencing but don't really wish to talk about. It seems that some women sail through, I am not one of those.

I started this menopause at 23, the reason was radiation therapy. I'm starting HRT soon which should help with these symptoms although it may not help one of them. I don't think many people will get how I feel going through menopause, I'm sure a few will think great no periods. I guess I would have thought that before going through it to.

- Posted using BlogPress from my iPad

Leaving next

So for a while iv been struggling on and off with fatigue, unfortunately more so lately then not. I'm still trying to keep up my gym routine but the last two weeks iv struggled more then ever. I struggle everyday I go to work. I feel faint and weak. It all came to a head when I had a cold after another cold work just got harder and harder and despite my store manager doing everything he could to help. There just seemed no way I could carry on my job and fulfil my role that I'm suppose to do and there seemed to be no other way the job could accommodate me any more then it had.

I have a chest infection currently and will most probably be starting Ivs if I'm no better by Monday.

So still trying to go on despite bad fatigue, which made me collapse on Thursday, I went off to work this morning and realised I just couldn't do it anymore. I have a lot of time off and never feel better, the anxiety of turning up to work, knowing it would make me feel awful. I just couldn't do it. So I sat down with my store manager and told him I'de like to hand in my notice. Not something I had done lightly. It had been on my mind for a long time and I just couldn't keep going.

I don't plan to sit around, I still want to work and earn my way in the world and I'm hoping I will be able to start teaching pole again soon, something I can do when I'm feeling up to it and I only have to teach an hour at a time then I can break and rest. I can organise my lessons around me. I can't sit around, it's just not me, but hopefully some time off will give me chance to get whatever's making me so tired sorted. The doctors think it's ebv. A virus that you can't get rid of but can be dampened down. I'm also not resigned to feeling like this forever and will get my energy back not matter what.

So my last day at work is next Saturday. I'm so grateful to my store manager and all he did to try to help. So I look forward to teaching I pole again and also I'm still working toward my public speaking and tv presenting career which is taking off with my first paid speaking job booked in!



- Posted using BlogPress from my iPad

Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


- Posted using BlogPress from my iPad

Sleepy girl

Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.

I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.

I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.

I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.


- Posted using BlogPress from my iPad