A Period of Patience

patience

noun

1. 1.

   the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.

   "you can find bargains if you have the patience to sift through the rubbish"

   synonyms:

   forbearance, tolerance, restraint, self-restraint, resignation, stoicism, fortitude,sufferance, endurance;

They say patience is a virtue, and when you have a chronic illness it is definitely an attribute that you need on your side.

For me, being patient has pretty much been a permanent state of mind for the last 4 years.  Patience waiting for appointments, for treatments to work (or not), for surgery, and most of all just for something to change for the better, to improve.  In fact, I've probably been trying to have patience for a lot longer than that, as I always hoped that in the years prior to my endometriosis diagnosis that my health would change and the pelvic pain I experienced would gradually ease and go away.  All the doctors said it would improve as I got older anyway - how wrong they were!  

Positive change is like a little bit of sunshine - if you can find some small improvement, it helps you to remain patient and optimistic that more positive changes may happen in the near future.

If instead you are seemingly stuck feeling the same way all of the time with no improvement to your physical or mental health, then patience can be harder to maintain.  Your calm and patient self tends to become elusive, and instead you feel constantly irritated, upset, angry and out of control.  I have felt just like this many times during my health and endometriosis journey, and it is a truly awful place to be.  It is so hard to get yourself out of that negative head space as well - people telling you to 'snap out of it' have no idea how it really feels to feel so controlled by your state of mind.

At the moment, I am feeling a bit stuck, because I'm dealing with constant bleeding, intense pain and the need to take regular pain medications (and anyone who knows me well will understand how much I hate taking pain meds!).  I am disappointed to be in so much pain currently, but have to keep my patience and perseverance going, and remind myself that I am only 10 weeks out of major surgery for my endometriosis and that 'good things take time' as the Mainland Cheese TV ad says.  But this time, unlike other dark times in my life, there is an abundance of hope that things will gradually improve.

As my Gynaecologist said to me when I attended my post operative appointment a few weeks back...

                  "All we need now is time and patience".

How Do I Take Care of my GP?

This is a question I thought I would never have to ask myself!  Mind you, there are a lot of things I thought I would never have to endure or even think about, and a lot of those things have happened anyway, so I guess this weird thought should come as no surprise...

I have an ongoing issue with General Practitioners.  It sounds terrible to say, but I've been through a couple of different ones since my diagnosis just over two years ago, although I have been with the same one for over a year now.

The issue is that, for the first little while, they seem really caring, helpful and proactive in helping me with all of my 'complex' health issues.  They suggest things to try, and do their best to help me cope and obtain treatments or diagnostic procedures to try and figure things out.

But after a while, they seem to tire of me and become flippant, frustrated and not so helpful.  There are no more things to suggest (unless I suggest options myself and ask their opinion), and no more medications or interventions to try.  They start to tease me when I arrive with new symptoms, or when I dare to ask questions or share how I'm feeling in the hope of finding a little compassion, sympathy or support.

This quote from a blog post of a chronic illness patient really brought it home for me...

Once you reach a certain number of diagnoses, it's like they check out.  I can feel it.  When they see me coming, they begin to put off a vibe of annoyance and distrust.  It's heartbreaking.  I need them.  I need to be given a fair shot.  But they don't want to deal with me.  I'm too complicated.

To look at it from a GP's point of view, I can understand their frustration to a point.  I understand that it hurts them to know that they can't 'fix' me, and that they might even send me away following my appointment without being able to do anything directly to help with whatever I am dealing with at that time.  Here is a good blog post about working with chronic illness patients that has been written by a Doctor -

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

But I'm not just there for a new prescription or in the hope that there is some new 'magic bullet' that will fix all of my problems.  I'm not that naive.  Being on the chronic illness road for over 2 years means that I have learnt a lot of things, including that there is no cure (and there won't be one in the near future either) for any of the health conditions that I am dealing with.

Sometimes I just want them to reach over, hold my hand and tell me 'That really is no fun, and I'm here for you.  How about we do some blood tests to see what your so and so levels are like?'  Or perhaps suggest what topics are most important for me to discuss with my Specialist next time I see her?

It isn't all about pulling out your prescription pad and giving us more medications.  It's about compassion, and that is what I think is most lacking a lot of the time at my appointments.  It is just a small thing to reach out to a patient and let them know that you acknowledge what they're going through is tough and that you are here to support them, but it can make all the difference to someone who is travelling a long road through chronic illness.

I often feel left adrift and on my own between appointments with the Specialist who is managing my health conditions, so support from my GP is paramount on a day to day basis to help us get through.

So to my GP, as well as trying to take care of myself, I will try to take care of you so that you don't get burnt out and dread seeing my name on your patient list.  But the effort goes both ways, so please try to take care of me too, and support me when I need it most.

Thank you.

Is Trouble Brewing?

Now that I've been on the Pill for about 3 months, I have reached the point where it's time to take the placebo (sugar) tablets in the pack for 7 days.  Or, if you're me, throw the sugar pill for that day into the rubbish bin every night, because what's the point of taking them anyway?

Today marks the third day since I came off the active pills, and to be honest, I haven't had a real crash with mountains of pain yet, which is what I was expecting.  I am super nauseous and tired though, and have a feeling of heaviness in my pelvis.

Although the withdrawal bleed I'm supposed to be having hasn't arrived yet, there is definitely a feeling that 'trouble is brewing' in my uterus!  There's nothing I can do about it except to wait and watch and see how things develop.

It's always hard to deal with when you know that things may get worse for some reason.  My motto is 'Prepare for the worst, and hope for the best' in these situations.

I'm safe in the knowledge that if things do turn really bad soon, I've handled it before and I will get through it again! 

This Hagrid quote from the Harry Potter movies helps as well...

Final Countdown

Off to see Dr V in the morning.  The day is almost finally here. 

I shouldn't be nervous about this.  I should feel calm, prepared and all together.  But I don't.

Why, when I'm going to a medical appointment does it feel like I'm going to be standing in front of a firing squad instead?  Why should I feel uncomfortable when a doctor is supposed to be here to help me?

I'm just feeling a whole mixture of emotions: scared, unsure, hopeful, realistic, nervous, worried...

Just really hope it goes well tomorrow and I come out feeling secure in the knowledge that there is a plan in place that is going to help get me back on my feet, and soon...

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.

Oh Boy - what next???

If you are squeamish or don't like graphic descriptions, it might be a good idea for you to press the back button and read a different post on my blog.  :-)

----------------------------------------------------------------------------------------------------------------

Can't believe this.  I've been on the new pills for just over a week now and they have actually made the pain a lot worse!  What did I do to deserve this?  You take medication on the advice of a Doctor in the hope that it will help (or at least not give you too many nasty side effects) and then it just doesn't.  It's gotten so bad now that I have had to break out the Ibuprofen (which doesn't help much anyway) just to get me through the day.  This means that  things are really bad because I have quite a high pain threshold and can usually put up with quite a lot without taking any meds.

To get it out of my head, I am going to describe the excruciating pain that I am in here.  This is the best way I have thought of to accurately describe how this pain actually feels to me, so here goes...

It feels like someone has split my lower abdomen open with a sharp knife, thrust their hand inside and is trying to grab hold of my internal organs and pull them out through a small slit.  

That sounds like I'm exaggerating, but trust me, I wouldn't make something like that up.

The fact that I get side effects from pretty much every medication I have taken used to bother me, but now I just put up with it.  However, I was definitely not expecting pain this excruciating to turn up.

Don't feel like I have much left in my Bravery & Strength reserves any more, but I'm going to try to keep going and keep fighting this until I am well enough to get on with my life!

                           

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!

                                

Here Comes the Pain again...

I was hoping that I wouldn't have to write this post, but that was probably just wishful thinking on my part.  After starting to make small improvements in my pain and other symptoms, I was very optimistic that I would continue to improve slowly, but it seems that it's not the case.

Feeling like my Endometriosis is waging a war against my body and the medication that I'm on which is supposed to be giving me some relief from my symptoms.

Not much to say today really.  It's just so hard when you begin to see a glimmer of hope and then the door is slammed shut in your face and you feel like you're falling back down the hole again.

                               

Side Effects and their effect on me

I'm on a tablet to help me sleep at night, since I haven't had a decent natural nights sleep since December 2013.

Printed on the box label, it says to "protect yourself from too much sunlight."  I have fair skin anyway, but I have been extra careful to not be in  the sun too much because of the warning on the box.

Today, I walked from the car to our local shops and was maybe in the sun for a total of 10 minutes and this happened!

Oh joy, the side effects of medications can be really annoying sometimes 😕

Flicking the Hormone Switch

Dr V kind of gave me 'the doctor look' when I went to see her in late November.  Endo girls, you'll know what I mean.  The look a doctor gives you when you keep going back to see them and you're still in pain and yet, they sit there and the look on their face says 'now what am I going to do with you.'

Each time I go to see her, she keeps on reminding me that "you only have mild endometriosis." 

This is true in one sense, as there was more Endometriosis present at my diagnostic laparoscopy (performed by a different Gynaecologist ) than there was when she went back in 8 weeks later to remove it.  I know, strange but true! However there was also more Endo found during my third surgery another month after that.  Overall, my level of Endometriosis is about Stage 2.

Dr V tells me that I only have "mild Endometriosis" in her opinion and I respect that.  I'm sure she sees much more severe cases every day in hospital and clinic.  Bearing in mind though, there's no correlation between the amount of Endo found and the amount of symptoms you may experience.

Now, to the Pill...

So, I've been on a contraceptive pill for just over 6 weeks now, as Dr V put me on it back to back (skipping the sugar pills) when I last went to see her.  Trying this to see if it helps the severe pain I was in every waking minute.

Yes, it has helped with the pain quite a bit, to the point where I'm now only in pain 2 - 6 hours per day, instead of every waking minute.  This is really nice, as it is giving my body a break from being in pain every day since December 2013!

However, as much as it's nice to have less pain, I've begun to wonder...

+ Will I have to be on the Pill long term (I'm talking years here) just to keep my pain under control so that I can function?

+ How long will the Pill be able to control whatever is happening on the inside for?

Bearing in mind here that I have Endometriosis, Adenomyosis and a questionable misbehaving right ovary!

+ What will have to happen when, like another Endo girls experience, the Pain starts to get really bad again while I'm still taking the Pill? 

+ Then, when my only weapon in the Endo battle (the Pill) has failed me, what then? 

All these questions that I have no answers for.  Endo is such an unknown quantity that it's impossible to predict what will happen tomorrow, let alone in 6 or 12 months time!

Off to see Dr V on the 23rd, so will listen to what she has to say about all of this.

In the meantime, now that I have got all the thoughts swimming around in my head written down here, it's time to stop asking myself questions I can't answer and just focus on one day at a time. ⌚

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.