Posts Tagged ‘endometriosis’
Week twenty seven- my run for endopendence
Yesterday Duncan and I with my sister traveled to London to take part in the 5k Adidas Womens challenge in Hyde Park. Both Clair and I had chosen to raise funds for Endometriosis UK.
Not long after I left hospital following my hysterectomy I registered to take part in this event – setting myself a personal goal of being well enough to take part. Of course I never imagined I would still be in recovery mode – I kinda assumed that by 6 months my surgery physically and mentally would be a thing of the past! By July it had become apparent that there was no way full training could resume. Therefore I reconciled myself with the fact that I would be able to walk at least.
On the eve of the run, Duncan, myself and Clair checked in to a hotel in Harlow – we had planned to meet another Endosister at this hotel. On the morning of the run, I met up with Lea and her hubby in reception, on my way down to reception a fellow guest was quite taken aback by my outfit.
Picture the scene, it was 7am on Sunday morning, I had black leggings, with yellow leg warmers, a yellow tutu and bumble bee wings! This poor man was walking towards reception with a £5 note in his hand – looking for a machine that dispensed toothbrushes and toothpaste. He took one look at me and asked why I was dressed like that , I replied and told him about the run and what I was raising money for – he asked me what endometriosis was and I told him simply what it had done to me and that I had endured major surgery 6 months ago.
He looked at me and said ‘what you had major surgery 6 months ago and you are raising money today’ , then he gave me the £5 note he was clutching . This simple act of kindness made me beam from ear to ear. It was the start of an incredible day.
It was awesome to finally met Lea, she was the first endosister that I met on line. After having her hysterectomy last year her journey has not been easy. Unlike me Lea had her surgery very quickly. Whatever your background is to having a hysterectomy there are so many emotions tied up with loss, bereavement and identity that need to be worked through. The last 18 months for her have too been a very personal journey.
Upon arriving in Hyde Park we made our way to the assembly point, to finally meet so many of the amazing ladies I am privileged to call my endosisters was just incredible, as I walked closer to the assembly point I was suddenly overcome with nerves – what if the girls didn’t like me ?
I can’t remember who I saw first but I do remember Jacqui Tavares-Weeks nearly strangling me when we finally met. Jacqui and I became friends via FB in February of this year. She is one of the most incredible endosisters. Her illness has not become her. Prior to her hysterectomy in July and post op she continues to struggle with the ravages of this illness, in addition to having Fowlers syndrome. Her determination to take part in the 5k run and actually run was just amazing!
I think there were around 50 endosisters there – I will upload some photographs on to my blog. There are many incredible shots. Hugs and emotions were running high as well as an abundance of adrenaline! So many of the girls have a place in my heart Fran , Leanne, Lucy, Jayne, Bee – the list goes on and on. I am only sorry that the whole experience went by too quickly and sadly there was not enough time to speak to everyone, I am especially sad that I didn’t get to meet Lucy Palmer properly – her blogs move me incredibly. I only hope we get to meet again sometime.
Most of the girls there were members of the facebook group I had started up – so we all knew ‘ish’ each other which made a big difference.
We all made our way to the startline – the amount of people there was just incredible! as we walked over the discussion turned to who was walking and who was running – I maintained the stance that I was walking , as did many of the other ladies. As we got closer and closer to the start line, we were all checking with each other
‘so you are walking’ …… ‘yes I am walking’
then again ‘so you are walking’ …… ‘yes I am walking’
this went on for some time till eventually it changed in to ‘I think I am gonna run’ ….. ‘oh okay I will run too’
I checked that my sister didn’t mind – she wasn’t able to run it. She told me to go ahead and before I knew it we crossed the start line and I was running. Suddenly I was like a woman possessed – running alongside Fran and Lea, spurring each other on. I didn’t manage to keep up with them, but that didn’t matter , I had something to prove. I needed to prove to myself that I could run 5k. I needed to prove that what ever had happened this year, however much endometriosis has taken from me – I have survived.
As I ran , I could feel myself and the anger that exists within me burn away – I wanted to scream and shout at Endometriosis …. you may have taken my fertility but you will not take me …… if there is ever a time for emotional outbursts that was it – I wanted to shout and scream, the feeling inside of me was just incredible. I keep telling myself to run that little bit more. I managed to run to 3k , then I allowed myself to stop, knowing that I wanted to run the last 1k – the pain I was in by this stage was quite unbearable. The pain from my left lower rib was searing coupled with a stitch on my right side. None of that seemed to matter – but in the blazing sun it seemed appropriate to slow down.
Finally I crossed the 4k line and could feel within myself that I wanted to run again, as I started slowly jogging I started to cry. Tears rolled down my cheeks as I realised how far I had come. I remembered sitting at my computer hardly able to move, only days after my op , registering to take part in the run. I remembered my lost babies, I remembered how Duncan and I made the decision that I had to have a hysterectomy, I remembered how foolish I had been thinking that my recovery would be quick and that emotionally I would be able to move on and face the rest of my life without looking over my shoulder at endometriosis at every which turn. Foolish maybe …. yet its what has carried me through these 6 months…. foolishness and some fantastic friends, and my husband.
As I approached the finishing line I heard Matt (Jacqui’s husband) shout at me words of encouragement – this gave me the extra ounce of energy I needed to cross the finishing line ……. I had done it ……. all of those people who had sponsored me ……. the last 6 months which have been the hardest in my life ……… I had taken part in the 5k Adidas womens challenge in Hyde Park. I had run 4k out of 5, only 6 months after having major open abdominal surgery. No one could take this achievement away from me.
A huge huge thanks has to go to my family and friends , who helped me to raise over £700 for the charity. Elizabeth in the states for donating on behalf of her sister inlaw who had a hysterectomy only days before the run, and to Sophie for donating what she would have spent on her Mum for her birthday had her Mum been well enough.
My eyes have been opened to a world full of so much kindness – thank you all
Love Endosister Liz
Week twenty six – end of an era
Posted on: October 9, 2011
Week twenty six – end of an era
Not only is it our wedding anniversary this week I have also taken my final exam for my degree. It seems so weird to write that sentence. Studying has been my savior over the past 4-5 years. Its given me a reason , a purpose, a goal. Studying has been so far removed from all of the crap that goes with infertility and endometrosis.
Throughout the miscarriages, treatment, ops and emotional turmoil, I could always lose myself in a book.
To be at the end of my studies feels amazing – to know within 2 weeks I will have a grade, and then graduate in November is simply incredible.
I remember the first day at Uni, I cried when I walked up the steps in to the uni building. So overwhelmed that I was actually studying for a degree – something that I had wanted to do for a very long time. Studying as a mature student means so much more than it would have done if I had gone to uni as an 18 year old. There is no doubt in my mind that my thirst for learning and need to achieve a good grade has got me through the past few years. Failure is something that could not be contemplated the first time I achieved a 1st in an essay, not only was I amazed that I had got top marks in something , I learned that for the first time in my life , my degree was within reach ….. and that it would be a good degree…… not just a pass.
I may have failed to have a baby, to fulfill the most natural thing a woman can do, but there is no way that I would fail in my quest to have a degree.
Whilst now I can celebrate this as a triumph, there have been times when I have tortured myself for having the opportunity to study. Comments like ‘if I were a Mum I wouldn’t be doing this’ have become second nature. Yet I do not want to live my life not experiencing things because of what may have been.
The decision to embark on a degree had been partly fueled as a condition of employment was the commitment to study at degree level. Yet I felt and still do feel immensely guilty for working at the level I do and for then studying. Often reproaching myself for having these opportunities, wondering whether it was my punishment for not being able to have a baby. Something I will never know is whether if I had children the way I had dreamed …… would I still be working at the level I do….. and would I have studied….. I like to think it would be a yes , but maybe I’ll find out in my next lifetime.
Watch this space for my results
Endosister Liz xxx
Week twenty
Posted on: August 8, 2011
Week twenty
Have just had a much needed break from reality with my darling husband Duncan. We went on a bit of a road trip, a week of total isolation and seclusion followed by a few days in our beloved VW.
One thing that struck me on holiday was that we cut solitary figures on the landscape of families holidaying together. Due to DH’s job we have to go away in school holidays which means we were surrounded by children, babies, pregnant women and families. Whilst I am considering starting a petition to ban pregnant women from public places one day a week I don’t think we’d get much support! It didn’t ruin our break but being alone together for a long period of time, having fun and watching families have fun together really brings it home. I watched DH a few times, I could see him watching a Dad teach his daughter to surf, it broke my heart. Later on that evening we spoke of how it had made him feel. We talked about our pressure points, the ones that hurt like hell. Mine currently is pregnant women, I seem to be allergic to them and get this urge to run as fast as possible. For DH his pressure point is watching young children be taught things by their Dad, whether its riding a bike, sledge or on this occasion surf board. DH is a patient and kind man, one who would make a fantastic supportive and loving father. He too felt that we stuck out on this crowded beach with a beacon announcing ‘Over here thats where they are …. you know the childless ones’. Of course there is a flip side, everyday we ate out at lunchtime – not burger bars either, we enjoyed nice food and the company of each other.
DH and I were able to talk in part about where we are both at currently with this journey. What I had not realised is how much I have changed as a person , I mean I knew I had changed but the outside world sees a different part of me to what I feel internally. DH spoke of how different I had been as his wife throughout the whole fertility journey, he hated watching the physical and emotional toll that Endometriosis laid on me. How he hated seeing me pumped full of drugs which at times turned me in to a hormonally charged maniac. I never realised what egg shells he lived on, never knowing which wife was going to come home from work or how this wife would react to the smallest of things. It was so beautiful to hear that he loves me more now than ever and he loved getting to know the new Liz. It was also painful to hear his take on how the treatment affected his life too. I love him deeply, I love him so much that love seems too mild a word, its more than love. He knows me more than I know myself and if he is learning who the new me is still , no wonder I am floundering with it too.
A close family member whilst we were away asked me what the purpose was now of my life, I was dumbfounded because I really don’t know, the chapter has been started but the pages are blank.
Throughout the last 20 weeks I have hit my emotions head on. There are so many facets to coping and living with infertility. Logically I understand this and as you know have written about it on here copious amounts of times, yet I am tired of this treadmill. I need to move on and begin fully appreciating what new life is rolling out infront of us. Whilst there are some huge advantages to being childless the huge hole in my heart is aching and needs some comforting. There is no doubt that the counseling I have had has helped me to be as strong as I am today, but my weariness is around the fact that the reality doesn’t change, just like the sun comes up in the morning and goes down at night. I am infertile. I will always be infertile, I bear the survival scars. Whilst I am hugely proud of how far I have come, I grow impatient at the monotonous pain and the journey that lays infront of me.
I have always tried to be positive and look for the silver linings, yet now as I write this I am starting to wonder if I am so tired of living with infertility and not letting it consume my life that actually maybe its become a fulfilling prophecy and indeed it is winning. Whilst friends and family have been fantastic I can see that they are tiring of asking how I am feeling today , not really wanting me to say ‘do you know what this hurts like hell’ .
Who knows – if this came with an instruction manual then I wouldn’t be writing this blog.
Kind regards
EndosisterLiz
Week eighteen -health update
Posted on: July 18, 2011
Week eighteen – health update
Can’t believe its been over a week since I wrote my last post, apologies for my absence.
In the last 10 days I feel like there has been real progress made, emotionally I mean. Strength is fighting its way out of me, along with a peaceful acceptance that the pathway I am on is where I am meant to be. Of course the immense sadness is there , its caught me unawares a few times, but what is different is that I allow it to come out – the urge to hide it from the world is less prominent. Writing silent infertility really helped me to understand that the badge of honour ‘I am infertile’ should be worn with pride, I am so lucky to have this badge of honour. If people don’t believe me then I can always flash them my scar ….. OMG imagine their face!
If you had a cut and you knew it would hurt pouring salt in to it – you wouldn’t do it would you? This is my new philosophy, if I know something is going to hurt then precautions need to be taken, am not saying that I am never going to sit next to a pregnant woman again – but currently I don’t want to so therefore I am not going to. If anyone has an issue with it then this is their issue , not mine.
I have spoken before about not being part of the parent club – I discovered last week completely by chance that some ladies who have had a hysterectomy consider themselves to be part of a special club. So by default I am part of this club, I guess its not a club that people chose to be part of….. can’t see people queing up to join can you?
You will know me well enough by now to understand that I am a glass full person not half full, but I do have something quite serious to tell you. Endometriosis has been part of my life for as long as I remember – even though I didn’t know what it was called. There has been suspicions that the endo was rearing its ugly head. Sadly this has been confirmed. 10 days ago I started bleeding from my bowel, any blood from this part of your body is not good. I had celebrated the absence of this bodily function, but for 5 days it returned. On Friday I visited my GP to discuss what he thought. He confirmed that it is most likely that the endometriosis is either regrowing or its causing the difficulties with my bowel, constipation, shooting red hot poker pain and bleeding. For the next couple of months we’ll be monitoring the situation before we decide on what is the next course of action. My GP was lovely he discussed that due to the severity of the endometriosis it was only ever going to be a subtotal removal, what confuses me is that there is no consensus of opinion about what makes it re grow …. I have no ovaries and am therefore not producing the hormones that should ‘feed’ the endo, so my endo must be feeding itself from something else …. but what!?!? Am not taking the HRT so it can’t be that.
My GP also gave me a Fit note …. I know ….. I am officially FIT, thats such a laugh – me fit ………..
In all seriousness this means that I will be returning to work in a few weeks, I have some annual leave that I need to take first. Am booked to see the Occupational Health specialist and will then be looking at a phased return to work.
If I reflect on the last eighteen weeks I almost don’t recognise myself, I feel this journey has changed me beyond all recognition, what this means for me as I get more and more in to normal life I don’t know, I guess only time will tell.
Endosister liz
xxx
Week seventeen – floored!
Posted on: July 7, 2011
Week seventeen – floored
Yesterday I was completely knocked sideways …. have you seen the new barking idea to sell lottery tickets for £20 in the hope of winning IVF treatment! what the hell has happened to this world. If it’s not enough that there are people who suffer with infertility some damned idiot has started a ‘win a baby raffle’ . Unfortunately for the shop assistant I was in the local corner shop when I saw the headlines in the paper, I let out a little whimper which quickly became a sob …. there I was in the middle of the shop crying. I was so angry- it made my blood boil. What kind of world are we living in?
Today I have been feeling stronger, I am the first one to admit that the last 17 weeks have been no bundle of laughs, it has simply been the hardest time of my life.thought I knew what I was letting myself in for. Each day presents a new challenge and a new way of looking at things. Today I am different from the person I was yesterday and tomorrow I will be different again.
Tonight I went to fat fighters (no the consultant isn’t Margy!) Am thrilled to say 2 lbs to go and I am pre op weight!, during group a lady announced in a delighted manner that she had something exciting to tell us all. I must have a sixth sense , because the moment she said it my stomach just flipped, I knew she was going to say she was pregnant. Of course what else would she say. If it was me I would be beaming from ear to ear….. only I know it will never be me announcing that I am pregnant. For10 minutes she proceeded to chat with our consultant about whether she would or wouldn’t continue with fat fighters – something that she had a right to do. But I wanted to get a big fat wet fish and slap her hard around the face! A friend who like me is unable to carry a child tried her hardest not to cry, we sat together trying to ignore the conversation. Honestly I know she didn’t do it on purpose but she went on and on and on. My friend eventually left the room and took some time out away from what was being said. When I got home tonight I allowed myself to empty my body of all emotion – how can you cry so much for something that you never had!
Today for me had been a good day, I felt good, I finished an essay today for uni and was feeling okay about things – even had a chat with a colleague about my return to work. But this has floored me again.
I have stopped watching TV because every advert has a child and its Mum with every other advert being Clear Blue, I never watched many soaps but every damned programme has someone pregnant or a baby in it. It’s everywhere and I am fed up of being reminded. Am ashamed to say that those friends on Facebook who put their scan on their profile or continuous pictures on their walls of their new-born are well and truly hidden from my news feed. I am really pleased for them but I don’t want to know. Anger is not a natural emotion for me, but anger is something that is certainly being channeled by me now.
A friend who has a child said to me something like , I know this is painful but you just have to move on. You know what , yes it is painful, I am moving on but this is never gonna change for me now, I have to let myself deal with each hurdle as they present themselves and if that means I talk about it and tell people it hurts , than so be it – I am not going to hide it. Infertility has made me feel ashamed, embarrassed, barren & less of a woman – I know these things are untrue but it’s what I feel. Infertility sucks and it hurts like hell. A lady came to see the both of us at the end of the group and asked if we were okay, we just said yes – in future if anyone asks me I am going to tell them, actually no I am not okay that I can’t have children and why, not because I need them to know my story but because they are bound to know another lady within their life who is also infertile. It’s such a lonely place to be and people need to know how silent and lonely it is – maybe by telling people then those who are isolated and alone will get some support to help them through.
I can’t hide from the reality that life goes on and people will keep having babies, they will keep announcing their pregnancies and I will still see women everywhere with that bump. The bump that means they are part of the club that I never will be.
Through the immense sadness I wonder what that means for me , what is waiting for me in my life – it can’t be consumed with my grieving for motherhood there must be more and I know there will be when I am ready to find it.
Nite nite
Endosister Liz
Week thirteen physical update
Posted on: June 13, 2011
Week thirteen Progress
I can really tell that physically I am making progress now am walking further and further. Am having a few issues with lower back pain, which is something to do with my stomach muscles. D says that I am moving easier than I have been, although sudden movements aren’t recommended. Also I am still finding it difficult when I lift things out of the oven (and this ‘ just because I am no good at cooking!). That was a real bonus of me being away, Duncan was really complimentary about how much progress I had made in the week that I had been away.
I can feel the incision constantly, if I move, breathe or cough it’s always there (pelvic floor all the way), the good thing is that it is definitely lessening. When I am out walking I can feel the scar tissue pulling as I move, this gets progressively more uncomfortable, but is bearable until I get tired.
The tiredness still hits me like a wall, or a mountain. From the research this is quite normal and is part of the bodies healing process.
With regards to lifting things, am still airing on the side of caution about this – particularly as my back is so uncomfortable , really don’t want to do any damage to my back.
My really exciting news is that I started driving this weekend – nearly 14 weeks without my own independence , how I have missed my own wheels! My first drive was to Tesco – about 2 miles there and back. It felt great. You will remember that I have described a funny pain on my lower left rib, when I twist it pulls and feels like its a knot. When I am a passenger in the car, it often pulls and hurts. This was slightly worse when driving – in fact the feeling it gives me is quite nauseous. Am sure this will get better with time though.
Also my vulva & bowels have been rather uncomfortable in the last week. Partly I wonder if its because I have been eating wheat , I have more or less avoided it for about 3 years, but whilst with my brother I really went to town!
The other difficulty I am getting is with my right hip, with no warning it gives way. I got this pre op and I was told it was due to the endo wrapping itself around my sciatic nerve. Am also hopeful that this will get better over time.
But I kinda feel that the pain I am experiencing is probably as good as its gonna get, therefore I intend to stop thinking about it. I know I won’t do anything to harm myself now, I just need to take it easy and build up my stamina and my strength. I am sure this will help with some of the discomfort.
Tomorrow I am going to start exercising
Will keep you posted
Endosister liz
Day eighty two onwards – The facts will never change , its how I relate to it
Posted on: May 29, 2011
Week Twelve
Have decided to move away from the day thing and move to weekly , I may post more than weekly but I am sure that as my life patters in to normality it will become harder for me to write everyday. So weekly is now my pledge!
So this week , let me tell you how I have been feeling. I have completely moved on from the meltdown that happened 10 days ago, ‘day seventy eight’, I am not pretending to be happy, I am just trying to get on with it . The problem is that where I am will never change. I will never ever be able to have a baby, I will never ever again have to do a pregnancy test ‘just in case’ , for the first time in I can’t remember having sex or everyday being is about me rather than ‘will I have a baby this year or next’.
Please don’t think I was obsessed – because I don’t believe that I was, I actually managed to maintain a life whilst pining for motherhood and pregnancy. Now though I understand how much I desperatley lived with the hope that one day ….. just one day that thin blue line would stay positive and mean that we would become parents of our own little beautiful baby.
Whilst that dream is not going to ever be fulfilled for us, I have as you know written about the depth of the mourning that I have experienced since March 1st, I am beginning to understand that new dreams, different ones with opportunities and life are within arms reach – I just have to give myself permission to grab them with both hands.
Duncan has got a new mantra ‘we are going to start living again’, the first time he said it my belly flipped, it took my breath away – not that he said something I didn’t already know, but its comments like these that make you realise the sacrifice and support he has showed me every step of the way.
I do want to tell you about the difference with my broodiness. Firstly I am as broody as ever, I am finding it incredibly difficult to be with pregnant women and with babies, this is something that before my op I struggled with but I could manage – now its like I have ants in my pants and I need to run away as quick as possible. Secondly, whilst I mentally feel broodier than ever, physically my body has changed, I don’t feel the mental pull towards sex or heaviness of my breasts because they ache to feed a baby. I have no idea if what I am describing even makes sense – you probably think I am stark raving mad. But I did promise to tell you the truth – and this is the honest truth. Duncan and I were talking about it yesterday morning and he said that he wonders whether its because my hormones have gone AWOL, and that the instinctive yearning for motherhood as a primeval function is not being demanded by my body as the chemicals that feed this need have gone. Sound awfully convincing so maybe he’s right?
So mentally I am working on a positive attitude, the facts for me will never change, its only how I relate to the situation that I have control of. If I sucumb to the mental black hole that I was in last week then Endo is winning again – I haven’t come this far to let it consume anymore of my life.
I will always mourn and I will always feel robbed of something that I assumed I / we would have ….. our babies!
The pain is I think a little better, am certainly moving better than I was last week, the swelling in my bellie is also going down – I only know this as my maternity jeans are too big – I did try to wear my pre op jeans yesterday and lasted half an hour! I don’t know if this is common, and whether other ladies have struggled to wear their pre op clothes, or whether its because I had a vertical incision and so much done down there. Well what ever the reason for it – I bought some more maternity jeans today in a SIZE 12 !!!!! with belt loops so at least I can hold them up with a belt if need be. I am still uncomfortable under my left rib, but when I sleep at night I am sure I am waking myself up less when I roll over. Not that I sleep well or for long as I am too warm but when I sleep I know I am not in as much discomfort moving about.
I am going to meet my new nephew this week and stay with my brother and his wife for a few days. When I return I am going to increase my exercise, at the moment I am only swimming, but by the time I come home I will be able to drive which will make life so much easier!
Have a great week and I will post soon I promise
Endosister Liz x
Day eighty one
Posted on: May 23, 2011
Day Eighty One
I have just broken one of my rules – to never read back a post I have written, I read yesterdays blog as well as one of my earlier ones, they made me cry.
Not tears of sadness, but just to read how far I have come. 12 weeks tomorrow I underwent radical surgery in quest for a better, healthier life. Whilst I thought I was prepared for this surgery and my transition to better health, I now understand that I was physically ready but not mentally. I am not sure you can ever be mentally ready to say goodbye. I am surprised by how the presence of my womb, ovaries and cervix defined me as a woman. My exterior has not changed (apart from my Zip like scar) but internally physically and emotionally I have changed beyond all recognition.
Simply this time has been the hardest of my life , at times I have wondered whether it would ever get easier, I have renewed faith in my ability to get stronger and to become the Lizzie that those who are closest to me know – well the new version of Lizzie anyhow.
I will be eternally grateful to those whom I consider to be in the ‘closest’ bracket. My husband, my mother-in-law, my special friend (she is real – calling her my special friend makes it sound like she’s imaginary), my older sister Emma and Phil my twin brother. There are others obviously (my parents, younger sister and other friends) who have supported me but the handful of people I have mentioned have been the ones who have pulled up my pants, wiped my tears, known I was ill when I didn’t see it in myself, taken me to the supermarket and carried my shopping!
Since my operation I have been frustrated that I hear others who have a hysterectomy can drive or do normal things after only a few weeks – I was under strict instruction about no driving for at least 3-4 months. Not lifting anything for the first month, and even now I am unable to lift anything much at all without getting pain. This is when I have to remind myself that actually my op wasnt a straightforward hysterectomy , it was more complicated , the pains I still get from my bladder and bowel as well as adhesion pain are a constant reminder of that. For 12 weeks I have been confined more or less to my home, limited with my social interactions. As I wrote yesterday I am now beginning to understand how much this has affected me, and my confidence. Going to the wedding on Saturday was a reminder of how much I love meeting other people and learning from them. Whilst it has been hard for me to be detached from the world, it has actually done me some good, I have been given time to contemplate, reflect, think and just be with myself. This is not something I am naturally good at. I come from a large family , where there was constant noise and distraction. Being by myself is a new skill that I am now enjoying. My family nickname is Bizzie, my Dad always says I am ‘Bizzie by name and Bizzie by nature’. In recent years this has been a conscious choice. This forced period of invalidity has made me reflect and consider where I am in my life and where I am going to, it has forced me to face what endometriosis has done and how much grief it has caused me.
I am sure it is normal to see someone different than others see when you look at yourself in the mirror. We have never seen ourselves as having a rough time, our story has been what it is – our story. I have never seen myself as someone who has had a difficult time – we both feel incredibly fortunate to have each other and know that this journey could have been worse. It has shaped us in to who we are now, but somewhere in that story I forgot who I was, for too long everything I have done in my life has been shadowed by ‘but I am not a Mum’ or ‘will I be bleeding, or how much pain will I be in’. For too long I have been crippled by grief and guilt – its only now that I am beginning to understand how much I have been mentally punishing myself for being infertile.
I can’t imagine that overnight I am going to stop this mental torture but by recognising it in myself surely I can begin to address it. On Saturday one of the guests said to me that a hysterectomy is the most major surgery a woman can face, before you add on all the emotional stuff – 3 months is a milestone but it is still early days.
Whilst the sadness about not being a Mum is still incredibly raw, the excitement about our new life is building.
Thanks for reading
Endosister Liz
p.s I forgot to say, coped really well in heels yesterday, first time out in them so I did wonder – but I didn’t think about the fact that when you go to a church wedding you stand up and sit down alot!!! that killed my stomach. Today I have been shattered, feel like have been run over by a bus and my hot flushes have been manic! But was worth it xx
Day eighty – New Beginnings
Posted on: May 22, 2011
Day Eighty
Morning all, firstly you know that of late my blogs have been more on the sad side than the brighterside, my instinct is to apologise for this, but I am not going to – I promised to be honest and my feelings have been reflected within my writing. Writing is also helping me to heal – have discovered a real passion for it, one that I hope will become stronger as I become stronger.
Todays blog is entitled New Beginnings and you will I hope understand my reason for this. Yesterday I attended the wedding of a friend of ours, those closest to me know how much I was dreading going – I didnt want to put a dress on and make up, I didn’t want to make polite conversation – in general I was just being rather grumpy about the whole thing.
Against my will I did get glammed up, I wore makeup for the first time in 11 weeks, Duncan helped me get in to my spanx! (went for the full body effect as the swelling gets worse as the day goes on). Duncan did say to me
‘is it possible that in the future you will be able to put your own underware on with no help!’
Charming – I did remind him that it is at least 8 weeks since he helped me pull my pants up and I am sure if I was asking him to pull them off he wouldn’t have such a problem …. tee hee!
The wedding was beautiful, very understated and intimate, we were honored to have been invited and played a part. Congratulations to the happy couple!
Between the service and the evening reception some of the guests went and had fish and chips , sadly it was too windy to sit on the beach so we convened in the pub garden. I was really drawn to talking to the brides family, we spent a nice hour or so chatting and then headed home – I needed some rest if I was to make it through the evening do too!
We didn’t know any of the guests, you know what its like at these weddings, you have the drunk lot who are just drunk and the sober ones who feel like they are stuck out like a sore thumb! There is a pater for informal conversation with people that you haven’t met before and at a wedding its generally
‘How do you know the couple’
‘What a lovely day’
‘Have you traveled far’
‘DO YOU HAVE CHILDREN’
Well true to form less than 3 minutes in to arriving the million dollar question was asked.
It transpired that although for them it was not a fertility issue, due to fybriods they were also fairly used to the insides of a gyne waiting room and that a hysterectomy in the future is a real possibility. We were similar in age and experienced similar difficulties with periods, blood loss and pain. I give myself a hard time because I think I should be recovering faster than I am, but the couple couldn’t believe that my op was only 11 weeks ago they were really taken aback by how well I looked! This was really really nice to hear, I hope that our chat and also Duncan’s perception of my recovery helped them also as this was putting her off making the decision to have the op done, it felt great to tell her that even though I was recovering physically I do feel better than I ever remember.
Later on we ended up talking to the brides family again, as both Duncan and I were on the wagon (him because I am not driving, me because I don’t think its a good idea) we were offered a drink and we declined, explaining that we were only on lime and soda. To which the brides sister (S) said ‘Oh is that because you are trying for a baby’. I was quite taken aback by this direct statement . I then retorted ‘actually no I am recovering from a hysterectomy’ we were both shocked at the speed and contents of the comments. I did apologise profusely as I was rather blunt!…. at least we got the heavy stuff out the way early on!
Anyhow – as I said earlier in the day I had been very drawn to speak to her and I now began to understand why. S also is infertile, she has been with her other half for nearly 20 years, and now after all the heartache she said that I needed to know that there is life without children, that it is okay for me to feel broody and yearn but that I mustn’t let life pass me by because of my grief.
I know that this isn’t the first time this sentiment has been said to me – but for some reason last night I seemed even more able to hear what was being said. Maybe its because I had never met her before and she didn’t know me – she wasn’t just saying it.
The extent of our conversation will stay with me forever. We have a huge amount of common interests and I hope that we will stay in contact.
A special friend of mine gave me a copy of the Celestine prophecy to read when I was in hospital, through this I learned that there is always a reason for meeting people – nothing is by chance , but its up to you if you are ready to seek and to learn. I made a promise to myself whilst recovering that I would endeavor to talk to those I was drawn to and to seek my lessons. It wasn’t just about infertility the reason I met S yesterday, we talked in great detail about studies and her passion for photography and I was captivated by the whole discussion. At some point I will share our conversation with you but for now I am going to digest and absorb what was said.
Today as cheesy as it sounds is the first day of the rest of my life, I refuse to give in to this grief – I will continue I am sure to have sad days but I have to focus on the positives, and stop beating myself up with guilt and grief – the only person this hurts is me!
I guess also what I learned yesterday is how much social isolation affects a person, for 11 weeks I have been surrounded by a small group of special people. I haven’t had a problem with this and to be honest its all I could cope with, but gradually I need to reintroduce myself to the world, the new me!
thanks for reading
Endosister Liz
Day seventy six
Posted on: May 16, 2011
Day seventy six
Am well confused with my day numbering, just counted it up on the calendar – havent written a blog for 5 days and 5 days ago my blog was day seventy five but according to my counting tonight I am on day seventy six – I can’t work that one out so am just going with it!
So let me give you a run down of what has happened in the last 5 days.
I have been trying to write one of three essays due for my degree – they are the last pieces of work needed so I can graduate in November.
Pain wise I am still suffering with the lower rib pain, but am also getting cramping in my lower lips – you know …. ‘down there’ …….Have had a bit of a weekend with constipation too, which is the first time in weeks that I have experienced this – am wondering whether its because I havent had any prunes for a few days – have had extra today to make up for it!. You may remember that I was told for 12 weeks to not strain when going to the bathroom and to have my legs raised off the ground. I honestly wonder how I will get used to having my feet on the ground when I go to the loo now, its actually incredibly comfortable.
Duncan went away for the weekend so I was home alone, which was actually fine, I enjoyed having some peace and quiet and was good for him to have some time away.
I did do something rather stupid last Thursday…… many of you will understand this……… I wanted a pair of shoes under the bed ….. in a suitcase under the bed ……. you needed to lift the bed frame to get them out from under the bed (dont panic I didnt lift the bed up) but I did manage to get the suitcase to such an angle that I could unzip it enough to take one shoe out at a time – typically the shoes I wanted were the last in the suitcase (and they were broken when I got them out) but I managed it. Sadly I had to shove the matress to one side and boy did I suffer for it later !
I did manage to sit up in bed a couple of days ago without rolling on to my side to sit up, it shocked me – I did it without thinking about it and was so chuffed at how much easier it felt.
Movement wise there has been a marked improvement the last 6 days, Duncan has remarked that I am moving alot freer and am walking faster. If I need to get stuff from the floor I bend with my back straight and try not to twist as its uncomfortable but its great to be more mobile.
Great news indeed!
x
myendojourney 