Sunday 4 September 2011

Sunday 4th September 2011

Not much to report - to be honest I have hit an all time low. I am fed up with this condition - fed up to the back teeth of it's rarity and how the only way to deal with it is to wait a few months and see how it goes (as advised by doctors etc). I am fed up because it is something I still have to live with despite giving birth 5 months ago. I haven't even got the energy for this blog today.

However just wanted to say I have had lots of information sent to me from somebody in Germany - it has been very helpful giving info about case studies etc. I have looked through some but am going to look at the rest later on as I just don't feel I can take any more in at the moment. I just feel very depressed right now. However it has been good to find info about the condition despite this and its definitely given me more of an insight into it. I am going to pass some of the sites etc to one of the ladies who has contacted me who is a fellow sufferer so hopefully it will help her too.

I have also been invited to join a forum of a sufferer of an entirely different physical affliction if you like which has been good because I have realised that there are many conditions/problems out there which make you stand out from the crowd. At the end of the day support is support whether or not it is found from a fellow sufferer or just somebody who knows what its like to be different. I feel I can also offer support on how I have coped too, and its just nice to talk with people who know how it feels. It doesn't matter they don't have my condition - its just respect and understanding.

I also feel that acceptance is what I need to achieve. I am slowly getting there. I have always felt that I was outside of myself looking in and that until my operation wouldn't be myself again but I have realised that is silly. I need to live in the here and now and accept this has happened to me and for now nothing is going to change that fact! I know at some point things will change so I need to concentrate on living life to the full. The forum has helped me realise that.

I have seen my plastic surgeon. It didn't go as well as I had hoped. He said there is no procedure to cut any nerves within the breast as well as saying more kids would kick start the condition again. (I am getting upset with different doctors saying different things too but I guess that's the way it is). He also said if I continue to see much more regression and am left with just saggy skin this won't be operable on under the NHS. They will take the skin away with breast volume and also uplift, but will not just deal with saggy skin. That really upsets me as we could appeal but its not guaranteed. It just seems so unfair after everything me and my family have gone through. Now I feel like saying please don't go down anymore- just so I can be operated on and have my boobs in the right place again which is a silly way to be. At the end of the day it is still a medical condition that has made this whole process necessary in the first place so I guess I should just do as advised and take one step at a time and deal with this as and when. I am keeping my faith in the NHS -I have got to! I know I am lucky to be a UK citizen as other sufferers in other countries don't get half as much medical support as I have already received. I MUST focus on the positives. One thing I have learnt this whole time is that this condition is always one step ahead of me, ready to stick the knife in that little bit further. However, if the NHS won't help me then I will have to look to private - not ideal but someway, somehow I will get this sorted. I am determined. I have decided that I am not going to stress about this until I see the breast specialist next year - what is the point? He can hopefully reassure me then. I have been lucky to have more regression but even though I am now more in proportion the effects of the stretched skin do need to be sorted out badly. I feel I have lived this condition inside out, upside down and know all there is to know about it now! I feel like I could be an expert who gives talks on the subject just through living it!

Therefore I am going to sign off for now. I may not be able to check in so much as I am returning to work shortly and I am finding that I have increasingly less time to do things I want as it is! However I will be providing updates when I can. I am always happy to help fellow sufferers if need be or anyone else who is suffering from any other condition that is causing misery. As the advert says "it's good to talk".

Thanks to all for your positivity and encouragement - it has been really helpful - I am just going to try to have a couple of months where I think about something else rather than this frustrating condition as I am fed up with it taking over my life and depressing me further. The time has come to accept it and just deal with it. I think this will only benefit my recovery in the long run and my medical supporters and family wholeheartedly agree.

I will update when I have any further news or doctors info to provide so til then ...