Sick, Sick, Sick

I'm so sick and tired!

Sick of bring chronically ill

Sick of feeling stuck

Sick of putting life on hold

Sick of feeling like I have no control over my body

Sick of being treated like a medical mystery instead of a whole person

Sick of trying to take care of myself and not feel any better off for it

Sick of being poked and prodded

Sick of being judged and patronised

Sick of doctors treating me like I'm some kind of nuisance

Sick of being ignored

Sick of not being taken seriously

Sick of doctors telling me that all of this must somehow be my fault

Sick of poisoning my body with medications that don't help

Sick of people telling me it's all in my head

I'm just so sick of everything...

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.

So, How Are You Doing?

That question that every chronically ill person grows to dread...

"So, how are you today?" or "Are you feeling better today?"

On the surface, it sounds like a lovely, caring thing to say, and in most cases it is.  When my immediate family and close friends ask me these questions, I know that they genuinely care about how I am and want to know how I'm getting on.

But as time goes on, you do grow tired of being asked if you're any better by some people.  Those people that just don't seem to understand that your illness isn't going away.  Those people who wonder if you're making it all up because despite having multiple surgeries and seemingly trying a new medication every week, you STILL aren't better.

It seems callous to say this, but it feels like when they ask, they just the instant gratification of knowing they asked you, and don't actually want any details of how you're getting on with your health.

I have developed a response for when those people ask how I am.  I just say "still here" and leave it at that.  Often they immediately change the subject and talk about something else (usually themselves), but surprisingly sometimes they have a different response.  Once in a while, they actually continue on a conversation path about my health and ask more questions.

Not sure if this is the reason, but I like to think that it's because they're so surprised by my response, that they can't help but want to know more...

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.

                               

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.

                              

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.