Sunday, 25 November 2012

Evolution.


Image courtesy of http://blog.glennz.com/evolution/
Today's post is about how my goals have evolved over the period of time I've been living with endometriosis and it's really got me thinking about what my goals have been since my diagnosis in 2005.

Up until this year I can't really say that I've had any goals - apart from being able to have children. That's always been there, at the forefront of my mind, niggling away at me. But I've always just settled with the conclusion that I wouldn't know how that goes until I start trying. Apart from that, it's always been a take-one-day-at-a-time-and-see-what-happens kind of goal... Lets see how this treatment goes... Let's see if the Prof. can suggest anything else to try... Lets see if I will be having surgery again... Let's see... Blah, blah, blah!

But this year that all changed when my endometriosis flared up in February. My initial goal was to get the pain to stop. Then get back to work. I never imagined at that point that I would have to take a year out of the job that I'd worked so hard for... The job that later made me redundant! Above everything else this year, besides maybe winning a fortune on the lottery, my goal has been to get better.

It's been a really difficult time. Some days I've felt pretty good and sometimes gone without any tablets (that's happened on about 2 whole days this year!), but then, boom! The pain is back and I can't do anything again. It's difficult having to live your life like that, not knowing what's going to happen, just waiting to see how things go and taking one day at a time.

Since finding out my date for surgery, I've been setting goals to get to that will take me up to the operation. Little things like concerts or our break in London, Christmas time and New Year.

The big goal is my operation in January and as yet I haven't really looked past this. I don't know what's going to happen after my surgery. I'm praying it works and I'll be pain free - I know what happened last time with this surgery but I am trying to be positive and hold that hope tight. This is going to be it, the surgery that will change everything. I'll be back at work as soon as I can and then me and the boy can get out little house and properly start our lives together.

It's keeping me going - that hope. But I won't know if it all pans out until January.

S.

Saturday, 24 November 2012

No limits.


Image courtesy of http://livingwithra-nan.blogspot.co.uk/2011/06/spoon-theory-and-ra.html
Today I want to write about what I would do if I had an unlimited amount of time or funds or spoons in a day - what would I do with those 24 hours?

Well, I'm going to keep this post very short and sweet because it's simple. It's exactly what I have planned for when I've had my operation and I'm better...

I'm going to go shopping in the daytime and then go out for a lovely meal and a night full of cocktails and dancing with my friends and the boy.

It's nothing fancy or overly expensive but I absolutely cannot wait until that day.

S.

Teaching doctors about endometriosis.

Image courtesy of http://members.theunsignedguide.com/news/1801
I must apologise for being a little slow on the posts this week. I'm just having a complete mental blockage and just can't get the words flowing like usual! Even the posts I have managed to do don't seem up to my normal standard... Hopefully I'll snap back in to it soon because it's difficult to write everyday when you can't think.

Today I want to write about something that our doctors have taught us or something we have taught a doctor. Now, I can't say there has ever been a time when I've specifically taught a doctor something about my endometriosis, but it's more the response you get when you ask or suggest something. A blank expression and a "no, that's nothing to do with your endometriosis".

Since my initial diagnosis, it's become more and more shocking how little doctors actually know about the disease. I almost feel like I need to tell them exactly what endometriosis is sometimes.

I remember one time, a while after I'd been diagnosed, I went to the doctor because I experiencing really bad shoulder pain every month around the time of my period. I didn't know what it was, but I did know it played up when I was bleeding so I asked the doctor if it had anything to do with my endometriosis. He almost laughed at me - seriously. I mentioned it to my specialist when I next saw him and he told me that yes, it is due to my endometriosis. Shoulder pain is an indication that you have endometriosis on your diaphragm - which was confirmed in my latest laparoscopy this year. If I had listened to my doctor then I would never have mentioned it again.

At this stage, I'm now quite used to it and quite clued up on endometriosis and my options with it, but if you're not in the same position as me then you might not get the information you need because the doctors are not offering it. What then!?

Have any of you ever had any experiences with this same thing?

S.

Thursday, 22 November 2012

Thank you.


Original image courtesy of sleepy_king on Instagram
I made the connection late last night that today is Thanksgiving in the USA so this is quite a relevant post - a thanks post! But before I start, I would just like to wish those of you from the USA a very happy Thanksgiving!

As you all know, this year has been an extremely challenging and difficult year for me... But,
I'm going to keep this simple, after all, I'm not blummin' Gwyneth Paltrow!


I am thankful that I have the boy in my life. He has held me up when I've been crumbling, has been my rock through the toughest of times and has stood by me no matter what I've thrown at him. He is the shining star in my darkness and I love him more than anyone could ever know. We are each others future and I'm no longer alone in this. We will share our journey together and I know he will be there always always, bringing me the hope my heart lacks.

I am thankful for my pussycat Daisy. It sounds really daft to be thankful for an animal, but Daisy Bella means the world to me. She came to me in the most traumatic of circumstances but I like to think that Bunty knew that I needed her. She keeps me company everyday and is always by my side. Her and the boy are my own little family and I love her so much.

I am thankful for my family - my own family and the boys family. They have all helped and supported me this year whenever I have needed it. I am especially grateful for my mama. She's done everything for me even when she has been going through an absolutely horrific time herself. I've learnt that family are the most important thing to me - the ones that are always there for you regardless and after all my family has been through this year, it makes you realise how much they really do mean.

Even though she comes under the same label, I am so thankful for my best friend and soul 'sister', Loulaboo. Thankful for her weekly visits, for her daily texts, for keeping me up to date on the gossip and accompanying me on shopping days - in a carer style! - and for most of all just being my friend when I've needed a friend. I am thankful that she is my family so I'll have her around forever.

I am thankful for the friends who have stood by me this year, who have contacted me, visited me, kept me in the loop. I'm also thankful to all the 'friends' that haven't been there for me because at least now I can stop wasting so much time and effort on them. My mama always said, you'll learn who your true friends are when you need them the most, and I most certainly have.

I'm thankful for all the support I have found online. For my endosisters, who know exactly what I'm going through, for all of you who read and follow the blog, for all of you who take the time to notice me. I am thankful for having found an outlet in EMLWY.

Finally, I'm thankful that I have a roof over my head, that 2013 isn't far away, for my painkillers, internet connection and Netflix, thankful that I am safe here and that I wake up every day with a breath of fresh air in my lungs.

It's some times difficult to remember all the things we have when you feel like you have nothing.

I may not have my health, but I am very lucky to have everything else.

S.

After leaving the confines of my room.


I've been poorly the last few days with a tummy bug. I must have picked it up when I left the confines and safety of my house for a few hours on Sunday but I've been feeling really bad ever since with an upset tum and the worst headache you can imagine.

I've just spent the last few days in bed with Netflix, watching endless films and drinking water. I haven't even been able to eat properly.

I'm feeling a lot better today but my headache is still there. I've had it for weeks now and it will not budge!

I haven't got much planned for the next few days. I'm having to take it easy really because of this hip pain and headache and all my other aches and pains and exhaustion etc etc etc! I'm off to the doctors tomorrow to discuss a few things and then me and the boy are going out for dinner with my mama and her partner. I'm really looking forward to getting out for a few hours. On Friday I'm hoping to get in to town for a wander as the boy is going in to have a tattoo finished. I'll have to see how I feel though because I think tomorrow night may do me in! Then I have a quiet weekend planned round the boys house. I'm missing our friends birthday night out on Saturday because of how I'm feeling so I'm spending the evening snuggled up in bed with Lou and a cup of tea... So eventful!


Thank you to all of you who have replied to my last post, it's really good to get advice from other ladies in the same position!

Anyway, anyway, anyway, I'm tired and it's very late and I want nothing more right now than to climb in to bed so goodnight all. Hopefully I'll have something more thrilling than lying in bed to talk about next time!

S.

Monday, 19 November 2012

Back at'cha, sister!


For today's post, I'm calling on all my endo sisters for a little advice. I usually just blurt out any questions I have on Twitter or Facebook, but recently I've stockpiled a few for this post. If you have experience with any of my questions below, please leave an answer in the comments section. I'd love to hear from you all!

  • For those of you with endometriosis on your bladder, do you have any problems with wetting yourself?
  • For those of you with endometriosis on your diaphragm, has your specialist ever told you they wouldn't remove it because it was too close to your heart?
  • Has anyone got endometriosis higher than their diaphragm?... How was this diagnosed and what symptoms did you have?
  • Have any of you got conditions other than endometriosis, that have shown up since diagnosis? I'm particularly interested in hearing from anyone with chronic fatigue as I'm showing all the symptoms of it and I know it's more prevalent in women with endometriosis.
  • Have you found any alternative medicines or products that have had a positive effect on your endometriosis?
  • Have any of you found a special diet has helped your pain and symptoms?
  • Have any of you found cutting dairy, wheat and/or gluten from your diets has actually helped?
  • Have any of you used a TENS machine for your pain - has it helped at all?
  • For those of you trying to conceive or those of you who have been lucky enough to have a baby, do you have any tips or things to try? Have you had to try IUI or IVF treatments? How long did you try for before starting IUI/IVF? How long did it take you to finally conceive? Did pregnancy reduce your pain during or afterwards regarding your endometriosis?
  • Do any of you regularly exercise? What do you find to be the most effective exercise types ie. yoga, pilates, running, swimming etc for your endometriosis? Have any of you needed to go through a type of rehabilitation plan for getting back in to exercise after a long period of sickness or an operation?

Thanks in advance ladies.

S.

Sunday, 18 November 2012

A simple change to healthcare.


Image courtesy of http://englishrussia.com/2012/04/19/abandoned-maternity-hospital/
For today's post I wanted to talk about where the NHS could make changes based upon my own experiences of being in hospital, and I thought I'd have a long list of things to discuss. But, actually, the more I thought about it, the more it just came down to the one thing.

I've spoken about my experiences of being in hospital before, so I won't go in to too much detail again.

My first laparoscopy was a quick outpatient procedure so I was only in for the day. The staff were excellent, made you feel very comfortable and made sure you had everything you needed.

For my next surgery, which was my laser surgery and adesiology to remove endometriosis from my ovaries and Douglas pouch, I was operated on at a different hospital and I had a terrible experience. Like I mentioned, I've written about it before so I won't rehash everything again, lets just say that it winds me up thinking about it. When you are feeling at your very worst, especially after a major surgery, you want to be looked after - be given adequate pain relief, some food, a change of bedding since it was covered in blood and a little help to get to the toilet. But nope, I didn't get any of that - 3 days, I was in there and it was horrible.

My last surgery in May this year, my second laparoscopy, was at a different hospital again, and luckily my future surgeries will also be here. The nurses were absolutely fantastic from the moment I arrived until the moment I left and that's the only thing I'm seeing as any comfort for when I have to go back in to hospital in January (I'm trying not to think about my operation because it scares me!). At least I'll be in good hands with people who care about their patients and obviously about their work.

And that's what it all comes down to. I know nurses are underpaid and over worked and short staffed, but when it comes down to it, they have a responsibility to care for those people in their wards and make them feel comfortable - and at least do the basics of their job. I know everyone has their bad days and that most people don't enjoy their jobs, but the patients need to just be given a little more care and attention. A smile. Anything. The hospital I went in to this year is about 10 minutes up the road from the last hospital and the difference in quality of care was unbelievable. They offered me things to relieve the pain, gave me cups of tea and food, helped me get to the toilet and helped me get dressed. They talked to me. They checked on patients regularly and you never saw them having a gossip down the hall way when you needed something.

All I want, is some care from the people who are meant to be giving it to me and other patients. That isn't too much to ask for - surely?

S.

Saturday, 17 November 2012

(sort of) a post free day!


I've been pretty busy this evening and with not feeling good it's left me feeling more than a little whacked!

I mentioned in my last personal post that I was having problems with my period. Well, on Thursday it finally made a proper appearance, and boy, did it make up for lost time! It was ridiculously heavy but then it decided to stop again yesterday evening and since then I've been back to nothing. I did my second pregnancy test before my period started up properly on Thursday and it was another negative so I think it's just being a pain in the bum! My tummy is so swollen up it feels like it could burst at any moment!... And it's not just the fact that it's huge, it's hard as well and pulling any clothes over it hurts. I've been on my full amounts of tablets since yesterday though (Tramadol, Paracetamol, Ibuprofen and half a dose of Nefopam) and they are really helping with the pain.

I've just been taking it easy the last few days and I've mainly been sat in bed watching films all day, everyday, this week. I spent Tuesday at my mama's house which was much needed because she always looks after me! We've got a lot of problems going on within the family at the moment which is really taking it's toll on all of us so it's nice when we can all pull together and support each other.

Yesterday, after dosing up on all my tablets and sticking a heat pad to my clothes, me and the boy ventured in to town for an hour or so just for a quick wander around the shops. We got a free Elf DVD from HMV with an O2 Priority Moments voucher which was nice and I made the rounds in one of my favourite charity shops and managed to pick up some vintage finds - a beautiful blouse and a leather handbag!

I gave up dairy again this week. I had been a little more easy going on the diet for a few weeks, having a little bit of cheese here and there if I wanted it but I didn't feel very healthy being back on it - actually I just felt like a big fat lazy bum! - so I've come off it again. It doesn't have any effect on my endometriosis but I do feel better already. It's quite nice to be able to find healthier, lower fat versions of foods I'd usually eat or try new things. Tonight I made a dairy free dinner for my dad and the boy and we all enjoyed it. I might post a photo on my Instagram... Maybe. We are just sat down now with some snacks and movies. We watched Men in Black 3 earlier and now we are on to Chernobyl Diaries - which is thoroughly scaring the life out of me!

Tomorrow, if my tum allows it, me and the boy are hitting a car boot (since we haven't been to one in months now) and then going to visit Bunty's grave as it's her birthday on Monday.

Anyway, I hope you are all having a good weekend!

S.

Friday, 16 November 2012

Pictures to inspire.


Image courtesy of http://frecklesandivory.tumblr.com/post/15347503454
For today's post I've decided to share some art that has been inspired by endometriosis. Most of these images have been created by women living with endometriosis but some can simply be linked to the disease through your own interpretations.

Jodie, the lady behind the Facebook and Twitter pages for Endometriosis Awareness Through Art, kindly let me use some of the images she has gathered to show here... Thank you Jodie and thank you to the artists themselves for sharing and creating their work.



Image courtesy of http://belindaotas.com/?p=8268
Adelaide Damoah is a British artist and Writer who suffers from endometriosis. She uses her artwork to raise awareness of endometriosis. You can view more of Adelaide's work on her website.


Image courtesy of http://kayesedgwick.blogspot.com.au/
Created by Kaye Sedgwick who has recently set up the Roses of Endometriosis project which is working to raise awareness of endometriosis. Kaye, a UK based designer, was diagnosed with endometriosis 3 years ago and has since worked tirelessly to raise the profile of the disease alongside Endometriosis UK and The Endometriosis She Trust UK. You can read more about Kaye over at her site.


Image courtesy of http://www.painexhibit.com/ag301_Tupper
Created by Helen Tupper who states: "This represents how a muscle spasm feels. It is a hot fiery ball of pulsating pain which is wrapped up in barbed wires. It is very difficult to break the ball up. The wire bands feel like barbed wires so that when I try to exercise or work on the spasms, the tight bands become tighter and sharper. Pain is trying to win again by putting the tight bands around each spasm."


Image courtesy of http://www.painexhibit.com/ag401_Yolland
Created by Cynthia Yolland who states: "This is an expression of the two worlds that is pain, especially in hidden syndromes and chronic pain. There is the outer world that is normal. "You look wonderful", then the turmoil that is going on inside. I wanted to take the pain out of the hidden box and shake it, then show it to my doctors, and my family and friends. In fact, a copy of this picture is part of my medical records."





Images courtesy of http://abigaildoan.blogspot.co.uk/
These fibre art pieces were created by Abigail Doan and later pinned on Pinterest where someone commented to say that it reminded them of the adhesions that endometriosis causes.


Image courtesy of https://www.facebook.com/urbanidealist#!/photo.php?fbid=477427212280534&set=pb.160877737268818.-2207520000.1353022901&type=3&theater
Created by Urban Idealist Art and Design, this piece is called the "Story of my Pain" and illustrates the artists now nearly daily struggle with endometriosis.


Image courtesy of http://www.photoaccess.org.au/files/Period%20Piece%20catalogue.pdf
From a series created by Margaret Kalms entitled "Period Piece", an exhibition that shows the many aspects of menstruation, in particular the pain and indignity experienced by women. You can view more of the exhibition here which included photos depicting endometriosis.


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=437661756290122&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
These paintings were shared by Tina McCurdy on the Endometriosis Awareness Through Art Facebook page. They were created years before her diagnosis, but the turmoil that this disease can cause is evident in both pieces.




"Layers" and "Injustice" images courtesy of http://innovativesupportforwomen.wordpress.com/endometriosis-online-arts-project/595-2/
From an Online Arts Project, created by Tricia, a Creative Arts Therapist, who has also experienced life with endometriosis. These particular pieces were created by "Betty" and you can read her story of living with endometriosis and view more of her art work here


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=437373749652256&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
This is a piece created by Kelli Rossetti - still in progress, but very simple and effective.


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=436980866358211&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
This is a mixed media piece created by Megan Wilson.


Image courtesy of http://amandaspatch.com/
Created by Nicole and shared on Amanda's website, a lady living with endometriosis. Amanda also has a YouTube channel for raising more awareness.


I hope you all enjoyed this post. I think it's lovely to see some of the creativity that comes out of this disease - finally a positive!

Do any of you ladies have creative outlets to distract you from the pain and distress endometriosis can cause?

S.

Thursday, 15 November 2012

Travelling with endometriosis.

Image courtesy of http://www.thefreedomexperiment.com/
I've never really had to plan holidays or any travels with regard to my endometriosis before this year. It was always just one of those things that would get in the way. I'd look forward to something, finally being able to get away for a much needed holiday, or even a day out shopping and without a doubt my period would show up and along with that, the incessant pain.

Things this year have been a little different since my pain has upped it's game and has left me not able to do much at all. We have managed to get out for a few day trips and little breaks away but a big summer holiday abroad was out of the question this year - partly down to money but mostly down to the pain I've been in and if something happened with my health while I was away.

Anytime we have wanted to plan anything, we have had to plan around me and my period. Usually, I can somewhat cope with the pain and discomfort. But the week of my period is a complete no go. Most of the time I can't even really plan anything in advance because it comes down to how I'm feeling on the day.

For today's post I thought I'd share a few tips for travelling when you have endometriosis...

1. If you are planning anything you need to know when your period is due. I try and make plans for the weeks around my period because I know that I won't be able to do much when it arrives. This may not be always possible but if you know when it's due you can at least prepare for what's to come.

2. Remember your medication - I cannot stress this enough! I actually get a little panicked now if I leave the house without my meds because I'm in a mess without them. Make sure that your prescription is renewed in time to cover your needs and that when you leave the house you have enough tablets on you to not only cover the times that you need them but enough to cover you in case you are out longer than expected.

3. Pack comfortable clothing for the days where you feel bloated and don't want anything pressing on your tummy. Also make sure you are wearing comfortable clothing for when you're travelling.

4. Relax as much as possible. If I know I have something coming up, a day out shopping or a night out, whatever it may be, I make sure I leave time to rest and re-energise before and after. It's not always possible to do this but try and make the time. Sit down while you are out and take things slowly. If I don't rest, then it catches up on me and can put me out for days. Remember to pack a book or take your iPod too, these are all things that can help you kick back, especially if you have had a stressful day.

5. Plan your days according to how you feel. We try and alternate our plans so that one day we'll do something a little more energetic than the next day so that on that day I can recuperate a little and be ready to do something a bit more energetic again the next day. You need to be able to find a balance between the activity time and relaxation time.

6. Communicate to the people you are travelling with. It can be difficult when friends or family want to do something that you don't feel your body can take. But explain to them and hopefully you might be able to find a happy medium. But, remember, whether it be on a holiday or a day out, that it's their time out too.

7. Finally, remember to enjoy yourself! This is time taken away from your pain and misery, time to do something fun, relax and chill out. Find the goodness in the situation, even if you can't do anything energetic, sitting down in a cafe with a hot tea can be just as nice.

I hope these few things help you when you next have a day out or a break away... Do you have any tips for travelling?

S.

Wednesday, 14 November 2012

Dealing with negative feedback.

Image courtesy of http://pinterest.com/pin/142356038192720103/
Unfortunately, we can often be the butt of negativity. With people not understanding our chronic pain or infertility issues, we can be a misunderstood target for abuse. But it's not just us endo sisters or spoonies that have to deal with negativity - any and everyone can be faced with it at one time or another. It can appear amongst our friendship circles, in the work place or for no reason at all, online or even out in public.

If you've ever dealt with someone being negative towards you then you know it can make you feel really blue. It can show itself in all forms, from someone saying something nasty to your face, behind your back or sometimes you can think that person is being nice to you, when actually the meaning behind their words or actions is not so nice.

It could also be that the person in question has a pessimistic outlook on life and so they throw their negativity in to everything they say and do. In that instance, it can be very draining indeed to be around someone like this, because even when you are trying to pick yourself up you can be pulled back down by them.

Just try to remember that while people can try and bring you down, you have a choice in how you react to them.

I want to try and focus today's post on dealing with that negative feedback given to you by someone, and not so much negative people in general. Whether it be face to face or online, at work or with friends. I want to try and make you see that things aren't necessarily your fault and to learn to let it go.

The biggest piece of advice I can give is to not engage in the negativity. If someone has said something nasty to you or something that has upset you or made you feel uncomfortable, then go with it and try to get it out of your head. Quite often people can be out for an argument and say negative things just to get someones back up and get a reaction out of them. Sometimes it can come down to jealousy, that you're getting more attention and the person may not like this so they will try and put you down. Online, for instance, this is a key piece of advice, do not bite back. There has been a recent rise in 'trolling' so report the person if necessary, but do not engage in a conversation about it. If someone is simply questioning or commenting on something you have done, then reply, try to make that person understand why you have said or done something the way you have. Many times, someone will be negative because they have no idea about what you are talking about but explaining it to them can make them see what you mean. Sometimes it can even catch a person off guard if you are nice to them - even when they have said something upsetting.

Try and understand the underlying message in someones words and ensure that you yourself haven't misconstrued what they are trying to say. Everyone is entitled to their opinions so you must recognise this and see if there is anything you can take from their words in a positive manner. Maybe there is something you can learn from their words. Sometimes people can be misunderstood because of the language they have used or maybe their lack of tact. Take their criticisms as a source of honest feedback - honesty can never be looked down upon.

Don't ask peoples opinions if you can't handle the truth. Would you rather someone be honest and say something you maybe don't want to hear or would you rather someone be fake and say something nice even if they don't mean it? I know which option I'd prefer - honesty above anything else.

If someone is being plain nasty about you though and not so much something you have said or done, then remember that this person is a negative person. They will believe what they are saying to be true because there is a deep rooted problem within themselves. Maybe they lack confidence or self belief. Most of the times, their criticisms reflect more about themselves than about you. Usually these types of people react this same way to others so do not take it personally.

But, as much as their criticisms can reflect on them, it also reflects on you as to how you react. Why does something bother you? Why does this comment make you feel uncomfortable? It could be because you hold a similar belief yourself or because of something that has happened in the past. Asking yourself these questions may put you at ease and maybe even allow you to gain closure on your discomfort with it being you that needs to change rather than someone else.

And finally, I mentioned reporting people online, but in the real world, if you cannot take what a person is saying, then stay clear of that person. Reduce contact and limit conversations because if communicating with someone is causing you distress, then it's not worth it.

S.
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