Being My Own Cheerleader

I know the title sounds cheesy, but that exact phrase was what sparked the idea for this post really, so I'm stuck with it!

Before your imagination starts running wild, no I have not joined a group that wears short skirts and waves pompoms in the air while chanting slogans for football teams!

The word cheerleader applies to chronic illness in my mind as a way to describe supporting yourself.  To cheer yourself on and be a strength that you can draw on when you need it most.

In the 2 and a bit years since my Endometriosis diagnosis, I have ended up with an unusual kind of team on my side, which is made up of immediate family, a few close friends, doctors, other medical practitioners etc. 

But although I have my 'team' around me, I have learnt that you can't survive the day to day chronic illness life by solely relying on your team mates.  Sometimes they get tired, burnt out or just let you down when you least expect it. 

So, although the team is an important part of your support network, a lot of the strength and will to carry on has to come from within. 

It has to come from you.

Believe me, some days it feels almost impossible to carry on, and you feel like there is absolutely nothing left in the tank.  This feeling of being down and hopeless can last anything from a few hours to many days in a row.  It's so important to let yourself have some down time, because it is exhausting being your own cheerleader and always willing yourself to carry on.  Don't let your brain tell you that you are weak for shedding a few tears, or having a day where you just need some time alone to process things.  It's completely natural, because let's face it, no one can be happy and brave all of the time!

But it is also important to reboot.  To use that inner strength and courage to bring yourself out of a dark patch.  To see the light again and bring that positivity that lies inside all of us to the surface, even if it feels like it is buried deep within you.

Today may be a bad day, a hard day, an impossible day...

But tomorrow is a whole lot of new, a clean slate full of possibilities.  So dig out that inner cheerleader and help yourself through whatever is going on in life right now.  Once you see the light again and realise that what you do have is precious, you will feel more positive and the burden that you carry every day will feel a little bit lighter.

Taking the Plunge

Today I made a start on the next phase of my life.

I took the plunge and applied for entry into a distance learning Course through the Open Polytechnic.

It may not be exactly where I would have liked to have been right now, but my Endo journey has complicated life a bit and I haven't been well enough to follow my dreams like I would have if I was well.

That's the thing with chronic illness - all best laid plans can (and usually do) go completely out the window!  I've found that I have had to take some time (in my case a lot of time), step back and take care of my health first.  There's no point in worrying about what you're not doing, because that's not going to help you get to where you want to be.  In fact, it;s probably just going to make you more stressed, and therefore even more unwell, which isn't what any of us spoonies want.

So, now to wait and see if I get accepted onto the Course.  Hopefully I do, because it will give me another focus and be great for my mental health (although maybe a little tricky with brain fog!).

Doing this Course doesn't mean I'm cured by any means.  I am still in pain, and have chronic nausea, chronic fatigue etc.  But I have gotten to a point where I think I am stable enough to tackle this.  If it turns out I'm wrong, then it will just take a little bit more patience and perseverance, but I WILL get there in the end.

Hello little Blog!

I know, I know.  I've been gone from my blog for a while.  I promised myself that this would be a regular thing and I wouldn't abandon it, but it has happened.

Twice as bad because March is Endometriosis Awareness Month and this is my little corner of the internet to try and start a discussion about Endometriosis!

Been off the radar for the last couple of weeks because I've had a really rough time with a massive Endo flare up, which my GP and Gynae have been trying to get under control.  Just been really fun down and exhausted - brain fog doesn't make good blog posts!

Anyway, I'm trying to get back to blogging more regularly and have a few posts coming up, so hopefully I'll be more productive from now.

Hope you're all as well as you can be, or at least not having too bad a day today ☺

Hopeful and Cruel

Here I am - back to square one again.

Endometriosis is a bit like that.  You start on a new treatment or medication, and you're filled with hope that it will do what the Doctors tell you that it will do.

The first week or two is usually a bit rough as your body adjusts to it, and your hormone levels can be a bit upside down.

When things start to even out after a couple of weeks and you begin to see a positive change, you feel so excited and hopeful that this one just might be it.  That this might just be the thing that eases the pain and symptoms and helps you get your life back a little.

And then it starts.  The downhill slide.

The pain and symptoms start to return, and you feel so tired and ill.  You begin to question why nothing works.  Why it either doesn't work at all, or even worse it gives you some relief and just when you begin to hope, it all comes crashing down again.

At the end of the day, it all comes as part and parcel of having a chronic illness unfortunately.  Some things work and others don't, and you just have to ride the wave until the sea calms and it all begins to even out again.

Dr V to the rescue - hopefully...

Today I finally got hold of Dr V as I can't keep going on like this.  The pain is getting worse every day now and I have absolutely no energy due to pain and other related Endo symptoms.  Not sure exactly what is playing up - guess it's just a combination of my Endometriosis, Adenomyosis and grumpy ovary!

Dr V assures me that my body rejecting the medication is quite normal and that she will just have to try me on another pill instead.  I have just been and filled the new prescription, so I'm hoping that these pills will do a better job than the last ones because I'm really struggling right now.

I'll just have to see how things go...  Really hoping these pills will work because I can't bear the thought of continuing to feel like this for another day, let alone another couple of months!

                                

Endo Empowered!

On the one hand, I am feeling a bit Endo Empowered lately.  It's like a little celebration every day that I can carry on with less pain than I've had since 2013.  To know that the Endometriosis, Adenomyosis and troublesome ovary are all under control on the pill is a good thing.

But on the other hand, there is the fatigue! The dark heavy cloud that I am living under every single day with what appears to be little or no relief whatsoever.  It's hard to carry on some days when you are so exhausted and lacking in energy, which in turn leads to being unmotivated.

As usual, it's swings and roundabouts in my Endo world.  My job is to just try and find the silver lining hiding under every cloud.

P.S.  Photo below is the view from my hospital window last year.  Pretty nice if you can get a window cubicle as it makes hospital life a little more bearable ☺

Inside the mind of a GP

I was hoping for a little support from my GP when I went to see her this morning.  Since this has all been going on for over a year now and I am really starting to struggle, especially with my worsening fatigue and racing heart.  You would think that a little bit of sympathy and support wouldn't be that hard to get - right?

Wrong!

Talking about my fatigue that has so far lasted 8 months (very briefly) - "You're just tired because your body is fighting some kind of unknown allergy.  "Here, take this antihistamine for at least 4 weeks (even though she's put me on it before and it kept me up at night with terrible stomach cramps and diarrhea until I stopped taking it) and then we'll see what happens.  Oh, and by the way, it will help with your nausea as well!" 

Talking about my mysterious bloated stomach - "Oh, you're probably constipated."  No I'm not, I know what that feels like from when all the pain meds in hospital made me constipated and I would definitely know if I was!

Talking about my ongoing pelvic pain - "Is it worse than before, or just the same as before?"  Yes, it's the same as before, but it was pretty bad before, so shouldn't you be concerned that it isn't getting any better?  "Oh, I'll just make a note of that."  Great, how is that going to help me???

All the "helpful advice" I got from her today was to be told that I was dwelling on my symptoms too much and that I should learn to distract myself and not focus on how I was feeling!!! 

Mum (who comes to all of my medical appointments as my support person and second brain since my memory is so rubbish) stepped in at that point and told GP that I was really positive and pretty much permanently used the art of distracting myself to just get through the day.  I also added that I tend to go and write down what symptoms I am experiencing (and at what level), then just go and do something else.  Basically, my attitude is if I'm dealing with less symptoms that day, then that's great and I will enjoy it while it lasts.  If it's a bad day, then I just do what my body can handle and settle for that.

There is so much frustration inside me right now, as I feel like I am being treated like a complete idiot and every time I go to see my GP they just say "Here's another tablet - try this" with no real explanation about what might be wrong.  Or alternatively just say there's nothing they can do to help (like my last ex GP), or tell me to wait until my next Specialist appointment, which could be at least  3 -  6 months away depending on how long I've had to wait.

My GP also seems to have a low opinion of me when it comes to trying new tablets.  She says to me to "make sure I give this one a good go" like I don't want to try anything new.  This is not the case at all - I will try anything!!!  Just because I had to stop the last 2 tablets that she put me on due to side effects including stomach cramps, diarrhea, extreme tiredness and blurred vision does not mean I am not open to trying new things!  It just means that those tablets obviously don't agree with me.  Then she asks "How do you know that those symptoms were caused by the tablets I put you on?"  Um, because I didn't have these symptoms until I started the new tablet, and after I stopped it they went away - isn't that logical enough for you?

GPs seem to have very little understanding of Endometriosis and how to take care of their patients who have Gynae issues along with other mysterious symptoms in my case.  Also, they never believe you when you suggest that your other symptoms including worsening fatigue and my fabulously bloated stomach (otherwise known as Endo Belly by some of my bloggy friends) could be related to Endo.  They just say "No, those aren't classified as Endometriosis symptoms."  I get better advice from my fellow Endo Bloggers and other young women who are going through similar things to me than I do from any Medical Doctors - isn't that saying something???

OK, enough GP ranting now.  Time for a song to remind me that I can carry on and that one day everything will be all right again.

                              

The Endo 2014!

As much as I don't want to wish any days of my life away, I have to say that I'm glad to see the end of 2014.

In January of this year, I was finally given a name for my ongoing period / health / pain related issues.  I'd had problems on and off since 2007, but 2013 was when my Gynae issues really started to affect my general health on a daily basis.

After my first Laparoscopic surgery in mid January 2014, I was diagnosed with Stage 2 Endometriosis at age 21.  I have now undergone 3 Laparoscopic Surgeries and am still suffering with ongoing (potentially ovary related) pelvic pain.  To add yet another diagnosis, I was told by my Gynaecologist 4 weeks ago that I also have Adenomyosis.  Nice Christmas gift that was!

2014 has been a journey, that's for sure.  In some ways though, I am grateful for it because no matter how tough things have gotten, I have proved to myself how strong I am.  Also, I actually have a really high pain threshold, so that's good to know and I'm sure it will come in handy in the future!

I guess looking forward, I am still left with more questions than answers...

+ Am I going to be able to get my pain under control and keep it there?

+ Is my fatigue going to improve to a point where I can work again,  not have to limit my activities and live a more normal life?

+ Will my Endometriosis and Adenomyosis become more stable so that I have less symptoms?

+ Do I have to be on the Pill for the foreseeable future to control my Gynae issues and how long will this keep them at bay before I need more treatment or  (perish the thought) another Laparoscopic Surgery?

+ Will I be able to sleep naturally again without having to take tablets to help my body remember how to sleep?

I don't have any answers though, so I'll just have to carry on with my body as it is and see what my Gynaecologist has to say at the end of January.

It has been a tough and challenging year for me, that's for sure.

Just want to say a huge thank you to my family and friends for supporting me and accepting me how I am each day.  Also, a huge thank you to all the doctors and nurses who have taken care of me this year.  You have (mostly) done the best you could for me and there are a couple of you who I'd love to go out for a coffee with one day.  ☺

Bring on 2015!  I'm ready for whatever you throw at me.

Over the Rainbow

Wow!  Today was an amazing day!

Woke up in the morning and actually felt pretty good for a change!

The first day I've felt like the fatigue has actually lifted a bit and I've felt a little more part of the world around me.

It's hard to explain, but it felt like I was more alive and the world seemed brighter somehow.  Felt really energised this morning, then the fatigue started to take over in the afternoon, but not as bad as usual.  Had a pretty good day from a pain point of view as well - yay!

I know that sounds weird, but that's the best way to describe it.  The last day I had when I felt like this was back on the 17th of July, so it's definitely nice to know that my body is still capable of having a 'good' day.

Maybe the contraceptive pill is finally kicking in and settling my Endometriosis down?  I don't know - will have to see what happens in the next few days?  If this feeling continues, it would be the best Christmas present ever!

Link between Endometriosis and Chronic Fatigue?

Having recently read a few blog posts on Chronic Fatigue being Endo related, I am questioning the separate diagnosis by my GP that I also have Chronic Fatigue Syndrome.  I had no idea that Chronic Fatigue and Endo could be so closely linked, but always suspected that my ongoing fatigue was probably due to the problems happening inside my body. The fact that my Chronic Fatigue could be a directly related Endo symptom is another thing to consider I guess.   I've had ongoing fatigue for the last 6 months and reading those posts, it sounded like they were written about me.

I don't really have any advice to give anyone though, as I'm still trying to work out how to handle my fatigue.  I have only just found out abut the spoon theory and it does make a lot of sense.  I was told by the Pain Service to imagine that I had a 1 litre bottle of energy to last the whole day and that I had to choose how to use it.  Some days I am more mindful of my energy use than others.  Sometimes I just ignore it altogether, but regret it later as overdoing things or going out gives me what I refer to as 'jet lag' for up to 3 days afterwards.

It's difficult to control fatigue though -  take today for example.

Woke up this morning with a terrible 'fatigue hangover' as I like to call it.  Didn't overdo it yesterday, so it's probably from last weekend. So there goes the Pain Services theory about being able to choose what you use your energy for, as this is hard to do when you wake up in the morning already feeling completely exhausted! Just really struggled all day with no energy and had to force my body to do things in order to complete any task.

Also, unfortunately I tend to get quite grumpy when I'm really overtired. Especially today, when a member of my family told me my fatigue and lack of concentration was because I wasn't working or studying and lacked a big project to focus on! So not true, because I do have things to do, it's just that I can't get the energy together to push on and continue with tasks when I'm really exhausted.

I get so frustrated because it's like I have this cloud over my head and I can't snap out of it. Try as I might, I sometimes snap and take it out on my family, which I really don't mean to do, but I can't really help it sometimes. Then I feel really bad and try to say sorry and apologise. I know that my immediate family try their best to understand me though, so we get over it pretty quickly.

Overall, Chronic Fatigue is very difficult for me to manage on top of my other symptoms and illnesses, but my level of fatigue does change on a day to day basis. I just do my best and take it one day at a time.

This photo is a little bit of fun and makes me smile when the fatigue becomes overwhelming.