Sunday, 30 August 2015

Endometriosis: Post op

Ok, so thought I should update you all after my operation on Tuesday. I'm obviously alive. Which is a great thing.

I have a lot of mixed emotions after the laparoscopy though and I promise to fill you all in soon. I'm sure many of you have felt the same way I'm feeling now so I will post in the near future about all the details.

Sharing information is the best way to know we're not alone in this. But for the moment, I'm just getting my head around things and concentrating on recovery.

Speak to you very soon,
#MyEndoDiary ♡

Tuesday, 25 August 2015

Endometriosis: Operation Day

It's the night before the big day. Six hours to go and I'll be checking into the hospital ready for my third operation.

For the last 24 hours I have been quite calm on the outside. Inside I've been having butterflies and my heart has been beating ten to the dozen! Now that it's bed time I'm wide awake with very little chance of sleep. My overnight bag is packed just incase I have stay. I have everything ready and in place for me to come home.

I'm hoping I'll be one of the first on the list to go down to theatre. Hanging about and waiting will not do me any good! I'll end up even more stressed and my mind will be up doing overtime. I will be worrying and observing every little detail going on around me.

I'm dreading everything about it. I can't even begin to think about the recovery yet. But I know it's something we have to go through in order to get some relief from the devil that is endometriosis. And to be honest with you, there's not a lot I wouldn't do to try and get some relief. Bring on a sense of normality again!

Keep your fingers & toes crossed for me! ♡


Tuesday, 18 August 2015

Endometriosis: When did it all start?

Christmas 2009 is when my life changed. I had always suffered extremely heavy and painful periods. But to me that was normal. I didn't realise then that was a symptom. I was able to manage it. Whether it was wearing two pads, scouring chemists or supermarkets for period pain relief, heat pads, painkillers, holisitc bracelets, taking days off school or spending days in bed. That was my normal.

But Christmas 2009 is when more symptoms started coming. Nothing I could put my finger on exactly at the time. I just I knew I didn't feel right. Especially my emotional health. I was so down. With hindsight it must of been changes of my hormone levels as hormones play such a big part in Endometriosis.

Looking back, I now know that was the start of the flare. February 2010, I started having stabbing pains in my stomach. I remember the 1st ever time it happened. I was doing normal things. I was actually walking across my landing to get to my bedroom. The pains shot across through my stomach so badly I ended up crippled over holding onto the staircase. It frightened the life out of me.

The next time it was Valentines day. I went to a concert with my friends to London. In the car on the way home I started to get those same shooting and stabbing pains. Trying to ignore and conceal them then was so hard. That's the point I knew something definitely wasn't right.

Fast forward to June of that year. This was the first time to experience the 'Endo belly'. The swollen stomach. I had gone away to London for the weekend with my family to celebrate my birthday. I had a lovely blue day dress that fitted me well. I have pictures of me in it with my stomach flat. Once home, pains had flared yet again. My mother took me to the doctors on a Wednesday morning. My stomach was 'normal'. By the Wednesday afternoon it had instantly swollen. With that same dress on, I looked 5 months pregnant. I remember asking my mother if my stomach looked swollen and both our reactions when we realised how big it went. That is a memory that sticks.

When was the first time you realised something wasn't right? That it wasn't normal to be in this pain? Can you remember your first big pain/flare up?

I would love for you to share. Thanks in advance.


Endometriosis: 3rd Time Lucky?

August 25th. This will be the date of my next operation. My third.

I have waited 12 months to get this date. Then, out of the blue, I receive a letter from the hospital. With only 12 days notice. In a way, that's good. Less time to stress. But for me, I'll stress no matter what. I'll just cram a year of waiting into 12 days of worry. I'm now down to 7 days. This time next week...

Some people may think that knowing what will happen and how the day pans out etc, will be a benefit. A comfort perhaps. For me, it's the complete opposite. I know how emotional I will get. I know the feelings of panic, anxiousness and nervousness will build up. I know at certain points they'll peak and I'll break down. Just before I'm due to go down to theatre I'm guaranteed to start crying. The fear takes over and there's nothing I can do at that point but just trust the doctors and nurses. But that's normal I guess.
Third time around, it will not be any different. As silly as it may sound, I'm even more scared now than my 1st laparoscopy in 2011. I'm still frightened of the general anaesthetic. Will they give me too much and I won't wake up? What if they don't give me enough and I feel everything? As if either of those scenarios would ever happen! But my mind won't listen to fact and reason during this time.

What if they don't find anything this time? No endo? No adhesions? What then? Would I be going mad? Or maybe they find out it's got worse and spread. Neither are situations you'd want to be in. I feel like I can't win.

Then... the recovery. The part I'm dreading the most. Those without knowledge of endometriosis and surgery may think you have an operation and then you're instantly better. You couldn't blame them for thinking that. However, my recoveries are never easy. From experience I know my pain will get worse before it gets better. It will be a complete roller coaster. Some days thinking I'm better to the next day being brought back down to earth with healing pains.

I'll never get used to it. I'll never be able to prepare myself fully.

I just hope that it will be third time lucky. That it will give me a longer period of relief. Of being able to live normally for a good few years! Not to have it snatched away by endo again and end up back at square one just a year down the line.

I want my full life back. I want a career. I want to be 100% me, 100% of the time.
So, third time lucky! Keep your fingers and toes crossed, please.

Wednesday, 3 June 2015

Endometriosis And New Beginnings

I know I won't be alone in these thoughts on this subject.. Endometriosis and a new relationship.. 

What do you tell them? How much do you tell them? When do you bring it up? 

A million questions have been overloading my mind lately as I start a new chapter in my life. The last few weeks have been a bit of a whirlwind for me. A good one! But, fast moving, exciting and terrifying all at once. The scariest part of it all is how endometriosis will impact everything. Right now, it is behaving. But we all know how quickly that changes.

I don't want my life revolving around Endo. It has taken over way too much of it already! Now, I have started enjoying my life again, I'm terrified it will be snatched away to pain once again.

I have shared The Spoon Theory with my new boyfriend, who was extremely understanding about it. Which actually made me feel so much at ease. I have explained a few of the symptoms. He knows I get 'bad days' and that i'll need rest and hot water bottles. As with anyone though, until they see you in pain and having a bad day, endo is pretty much indescribable. Yes we can list off all the symptoms and the technical terms, but to know how it really affects us has to be seen. This is an experience I do not want to happen any time soon! But at the back of my mind, I know it eventually will. You can never escape Endo for too long.

I guess the only answer is to take one day at a time. With honesty and hope. We never know how we will be from one day to the next, so planning how/when/what to say is pretty irrelevant, I suppose? Endo is so unpredictable, so I will go with the flow. 


Endometriosis: Highs & Lows

How do you go from feeling like for the first time (in a long time) you're actually living your life and having a great day with friends and family, enjoying life and generally having fun... to less than a week later (or even a day!) being curled back up in bed crying with the pain, praying the stronger meds will kick in? At one moment you get hope, clarity and life, with a big sense of normality. The next minute, you're faced with pain, upset and darkness, with no sense of it ever being normal again. Why does life with endometriosis have to go from one extreme to the other? 

I've been thinking of how we react and cope during such low times. The lows can definitely become more prominent than the highs. Or is it because when in those situations, we focus all our attention on the rare high days? Which makes us feel more lost than usual and back at square one when they are quickly snatched away. 

How do you mentally find a balance when there is no way of controlling what endo will do next? Physically, we must rest. But emotionally?

I was once given a great piece of advice. When you are having bad days, it is important to find some positives and not focus on all the negatives. If you only have two good days but five bad in a week..  then flip it. Realise you have had two good days! That's great! You could have had a whole week of badness. If that is the case, then good things can be found in the smallest of things. We should celebrate them! 

Having a chronic illness is hard enough to deal with. We do not need to put extra stress on ourselves.
What tips do you have to battle the emotional lows that come with endo? Please share!!

Tuesday, 28 April 2015

Endometriosis - The Invisible Illness

I recently found myself in a situation that really made me think. I pointed this out to my Mother, who was with me at the time and since then it has played on both of our minds.

Here's the scenario...

I had received free tickets from a television audience company to attend a recording of a new Sky TV talent show. Whilst waiting in the foyer, members of the audience brought chairs out from the nearby bar themselves, to sit down. Quite quickly, the audience manager approached everyone to advise it was a standing only event and the chairs would have to be removed. Which I had no problem with. Over the other side of the room from me, a woman was on crutches. The members of staff explained again to that side, that it was standing only. The woman on crutches was allowed to keep her chair. Now, I have no issues with a woman on crutches being allowed to sit down.

My point is that I have a chronic illness. Standing for any period of time leaves me in pain. My back, legs and feet hurt so much, I have trouble walking afterwards or remaining in one spot. The pain in my stomach from Endometriosis can leave me crippled over. I was aware it was a standing only event, like everyone else was and accepted that before going. However, at that point in time where this woman was allowed to keep her chair because of a physical ailment, on the outside I looked fine. No one would have guessed with the pain I suffer from.

The difference to the general public between visible and invisible illnesses is so vast. The statement 'but you don't look sick' keeps going around in my mind. It is the fact that physical ailments, illnesses and disabilities get automatic priority over someone who has an invisible illness.

Before the show started recording, the tv audience company then stated they would leave a few chairs out at the back of the room, so that in between recordings, people could sit down as it was going to be a long day. Very accommodating of them and I used these in between breaks and then stood back up when filming restarted. However, in the middle of filming, two chairs were placed in the crowd by the tv company right next to me. An elderly gentleman who had an oxygen mask took one. A pregnant woman was given the other. Again, I was completely bypassed because to them I looked ok. Does having a chronic illness and being in constant 'invisible' pain equate to being of a lesser need than a pregnant woman?

So this has got me thinking. Should people with an illness or disability make their views louder? If in a similar situation, should we point out that an 'invisible' illness can be just as painful, it not more painful, than visible ones? Is it our responsibility to make other people aware of our invisible illness at every event we go to? Or should the companies providing such events, gain a greater understanding of chronic pain? If you have a physical problem, no questions are asked and allowances are made. Is it fair that we have to explain ourselves just because our illnesses are not visible? Do the companies need educating on bringing it up themselves? Should they should ask certain questions such as 'do you need a chair for a medical reason? - whether it be on a short or long term occupancy.

People should not assume you are fine just because you look 'ok'.

What do you think? I would love to hear your views!