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.

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When do you get back to work

Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?

Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.

This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.

Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.

I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.

So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.

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Where did the sparkle go?

This goes back to the days before I had a blog, I have many notes like this, updates I would write On My Facebook. I wrote this before I was listed, when my life was slipping away form me, it was just before I asked to be assessed for transplant. In a bad place, desperately clinging on to a life that had already decided I did not belong.

21/12/10

When Your ill its quite easy to lose sight of everything you've become consumed in self pity, anger and most defiantly jealousy. These things slip in so quietly you dont even know there there until your a miserable bitch and you feel like a drain on those you love.

Iv lost my sparkle, Its most defently gone. I dont know when, but i miss it so. I had a brief re encounter with it the other week when stu took me out to dinner and it was great, i felt happy shiney and like people were seeing me for me instead of the sick ill person iv become.

How do i get it back? Well i really don't know, my first awnser to anyone else would be to get rid of what ever has made you lose your sparkle, but i have no escape from my situation, Im trapped in my body which is sucking all my sparkle away. What makes me so angry about my situation is i try and try to make myself better, do all my treatment, religiously. But there is no escape, they only minimise symptons slightly im still really ill and its not making me better. God damn it. Jelousy comes in watching others running around having so much fun, the snow to me has been like a weight around my chest, i cant go anywhere do andything, Im stuck. Im stuck most of the time anyway as i feel to ill to go anywhere but now im truley stuck. The jealousy is there all the time with everything, im the smallest of gestures and how people take them for granted, say walking your dog, cleaning your home. I simply cannot do these things, i do them with the upmost effort and struggle. There is my jelousy. Its so ugly, I dont wish to take things away form people, but i cannot help the jelousy creep in. Lastly self pity, I hate that most. I hate that i pity myself, i pity the situation im in that is all i can say on that one.

I need to try and bring back the positivity, the light that i felt i used to shine, I will. It will come. I just dont know how yet.

I finish this, note not wanting to sound sad, I feel positive and happy, Iv written it down, its gone from my head so i can stop dwelling and move on to making it happen.

I have to say I didn't feel like this the whole time I was listed, but there were so many shadows where I was it was easy to fall In to one and get lost. Some say the sparkle was still there, I guess it was just so hard to see In
the shadows. I certainly didn't feel like a shining light.


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ITU and all the nitty gritty

I asked a question, what sort of blog would you like to see, here's one of the replies I hope this blog helps.
@Princess_Ellie2: @KirstieTancock bit general but how to cope after itu and being sedated for days and the after effects x

Thinking about my time in itu is very hard, it a horrible place to be, people have asked me how you cope with it especially a prolonged stay, there aren't any specific coping mechanisms but when I think about how I coped, well to be honest I'm not even sure sometimes. Itu felt like a big consuming black whole, I felt like even though I had had my transplant my life had ended and all I and left was this all consuming place, now I know many of you are sitting there and thinking that's not encouraging, or inspiring, it's terrifying but I guess when u think how I'm doing now, you realise that there is a light at the end of the tunnel.

Firstly some of the things I didn't expect, Ecmo. I didn't know what Ecmo was, I didn't know how it would feel, I didn't know what dying would be like? Ecmo, is a machine that takes your blood out re-oxygenates it, it also takes the carbon dioxide out and your blood is pumped back in. Its a heart and lung machine. To me, it was terrifying, but I want to look at why it was so terrifying, I was dying, on the verge of life and death, my lungs were bleeding constantly, there was so much blood i was suffocating on it thro my ventilator and my body swelled up to three times it's actual size, I was very sick, but at the same time, I don't imagine dying any way was going to be any less terrifying. This machine as awful as it sound was a miracle machine, it keep me alive when all other options were exhausted and I made a full recovery after it. When I was on Ecmo, I was in and out of consciousness, people have asked me if your always asleep on it, the answer is no, I know many people who were able to be fully awake, although I know that's not a pleasant experience either. I felt more piece full when I was asleep.

Tracheostomy I didn't ever think I'd have a tracki, it's a tube through you neck to your wind pipe that they can ventilate you through, it's easier to do suction through this then a Ventilator through your mouth. To do this they take the ventilator off, change the stent in the tracki and put a tube into the tracki with suction, it's a horrible sensation, I refused suction one whole day ending in a bronch which set me back, a tracki isn't pleasant but it saves going through so much more if you really need one. I couldn't talk with my tracki until I had a voicenator on it. My vocal cord were really weak and also my new lungs were still weak so I couldn't talk very well to begin with. When my tracki was taken out, I was left with a whole, yep, all the way through, it has to heal from the inside out, you have it covered with a dressing and clean it out when changing the dressing, I thought it was weird and quite cool. If your dressings not on you can't speak as the air misses you vocal cords.

Depression, I wasn't prepared to feel depressed. To feel like I couldn't do it anymore, like I had now forgotten how to go on, to live. I was so used to dying, to find the will and drive to keep going was hard. I felt despair, like I wasn't suppose to survive. Like we had gone against the will of god. I know it sounds extreme but there's no logic in itu, when you had been what I had been through, it felt like god had abandoned me. I'm not very religious, in terms of I don't follow a church, but I believe in god, I believe In Heaven, maybe not hell though. I also felt like someone had died for me, we all know that's not true my donor was unfortunately already dead, they were simply giving life after their death, in itu that isn't clear anymore. It all lead to a deep depression, I didn't want to watch tv, I didn't want to do rehab, I wasn't even sure I really wanted my transplant that I had now had. These things are all normal, there not there forever, you will see the light on the other side, life does go on after itu.

Hallucinations, I was never warned out about these, not properly. They were confusing and felt more real than the real, I have done a small blog on these on there own. But to recap, I didn't see the fluffy bunny running around the room like some, I saw the devil, god, mermaids in gel fish bowels telling me it was time to breathe as I was dropped form the sky, my family fighting and arguing. None of these were pleasant, they were distressing and scary.

The thinks that helped me, we'll they say its important to have a strong support network around you and I can't emphasise how important that is, because on those day you don't want to get up and do rehab you need your family to tell you, you have to now. When you need a human touch, you need someone's hand, not just anyone, but someone you know loves you, someone you can trust, because for me everyone around me seemed like an enemy. When you feel like you can't do it anymore, you need them to tell you you can, but also sometimes you need someone to tell you to man up and actually you don't have a choice, you were there, you had that choice now it's gone. Now it's time to live, to do your donor justice. Sometimes just sometimes, you need that Stern talking to. That's why family are so important. They fetch, carry, encourage, tell you off, rub your aching body.

you've got to keep your eye on the prize, so to speak, why are you doing this? Why did you want a transplant? maybe you didn't but have been in itu for a different reason? What will you do when you are well? what will you do with the rest of your life? And again it's hard to remember when your in itu, that's why you need your support system, your cheering squad.

Speak up, now you may not literally be able to speak, I couldn't for a while, but if something doesn't feel right you have to let them know someway, most of the time you think it's all normal and that your bugging people but things like hallucinations arn't right and people can help. You don't feel like you, You feel extremely anxious, there all things that can be helped and suffering inside your self is painful.

Recovery after itu, well the recover after itu mentally can be a long one, I talked to a phycologist on itu and on the ward but once I went home, I felt I was ok. I was suddenly on the high that was life, but then these memory's keep coming in, for me, talk, talk, talk, don't stop talking it through with people, discuss events with your family, go over how things happened, there's all these blank spaces to fill and if you don't fill them with how things actually happened you tend to rely on horrible hallucinations and incorrect memory's things that are probably a lot worse than the real event. Every now and then I still recall things 15month later and I have to ask people, did that actually happen?

So my advice is based on my own experiences. I had a very tough time in itu, is it like that for everyone? No. There are those people who are out of itu in a couple of days, it's still hard but much smoother. Not everyone has hallucinations, depression, tracheostomies. If your reading this with the thought that this is what you will go through, then try not to worry, your experience may be completely different and if you have gone through something similar and not sure how to go on from there, well I guess this shows that you can get through it, you can live a normal life. There is life after itu.


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