One of the hardest things about living with chronic illness is dealing with a time when things get worse, or something else goes wrong. When already dealing with illness everyday, further complications can be overwhelming. You don’t need to have a serious anxiety disorder for declining health to stress you out (but, of course, I do, which makes it all the more stressful).

I don’t know how much I’ll be posting on this site over the next few months. I still really believe in what I started out to do here, but right now I have more questions than answers, and I don’t know if throwing them into cyberspace is the most helpful action for me to take. Now seems like a time to focus inward and work on learning to manage my anxieties.

It will also probably take me some time to sort out how I feel about being inflicted with endometriosis – that is if I ever get past the fear (it is terrifying to know that my body can and will produce that much pain – excruciating is not nearly a strong enough word). I had a few years to process and learn about fibromyalgia before I started writing this blog – I had developed strategies for coping and even excelling within the limitations of that illness. Right now, I am just trying to stay afloat while I come up with some way to maintain my quality of life while simultaneously trying to learn about my various health problems.

I still wholeheartedly believe that sharing stories like mine will help people cope with, and understand chronic illness. Right now I’m just too embedded in my own story to be able to process and write about it. So I may be a little scarce for the next little while. I really appreciate everyone who has supported my efforts on this project, and I do hope that you will stay signed up for the RSS feed so that when I do get back to posting, you can keep reading.

Much care to you all.

After almost three weeks at home with my parents and family to look after me, I thought that I’d be doing better, but the truth is that things are still rough. Mentally and physically I seem to be in a great deficit. I am really trying to be proactive in making things better, but am marred by the fact that I am exhausted. Anything I do leaves me exhausted; the only activity I excel at right now is sleep! I’m hoping that it’s just from lots of Christmasy stuff, and that I just need some extra sleep in order to get back on my feet.

Join me as I wait for an incredible energy boost!! (….) Barring that, I will spend the new year continuing this past year’s mission – to find every way possible to make my life easier and healthier.

The weather here is fluctuating like crazy which means a lot of migraines for me. Just what I need. Monday night’s migraine had me vomiting for several hours of the wee morning. It really, really sucked. The only bright side: all the migraines since then have seemed almost pleasant just based on the fact that there was no vomit involved (yet…keep your fingers crossed). I know that chocolate can be a trigger for some people’s migraines, but while I was in headache hell today I was craving chocolate like nothing else! It is actually a craving that I often get with a string of migraines or headaches, and when I ate chocolate tonight it actually helped me feel better! Chocolate as medicine?! I’ll take it.

I know I said I wasn’t going to post anymore…I’m just really restless (as a result of endless headaches probably) and am trying to wind down to a calm enough state to get some much needed sleep. I would normally do some yoga, but I’m a little worried about aggravating my already nauseous state through that kind of movement… I really don’t want anymore vomit…

I’m looking forward to sleeping in tomorrow morning (I love my new sleeping pills :D) After experiencing a night of sleep on these pills, I have to say that I don’t think I’ve ever actually had an actual night sleep! I legitimately DID NOT KNOW that that was what sleep was supposed to be like – you go to sleep, and when you wake up  you feel a bit better! A number of theories about fibromyalgia posit that it’s a sleep disorder – something about not getting into the right state of sleep, and thus not being able to repair the wear and tear of the day. I’m really starting to believe them…

Seriously though, sleep is magical! I’m so looking forward to more sleeping, especially as I have no reason to set an alarm tomorrow morning :) Sweet dreams to you all (hopefully with no vomit!)

The reason for this disgustingness is a mild side effect from a pill I took last night to help me sleep (which is something I have not been doing lately). I don’t love the fact that my mouth still tastes so gross (I took the pill at about 8:30 last night), but I do love the fact that I actually got some sleep. So it’s totally worth it.

So unfortunately, this blog needs to move way down my priority list for awhile.

Gentle hugs for you all. See you on the other side of this craziness.

The gynaecologist appointment was basically just him asking me a lot of questions and looking at the results from the ultrasound. The ultrasound came back totally clear, which rules out a number of possible causes for the pain. He started me on birth control in the hopes of regulating things (which might put less stress on my body) and because apparently it can help dampen the progress of endometriosis.

When I left that appointment, I wasn’t actually sure if he thought anything was wrong with me. He made a comment about how they couldn’t find anything wrong with me (referring to all my test results), and I had to bite my tongue not to snap back “Welcome to my life”. Seriously though, he was very nice.

Later that day, at an appointment with my regular doctor, I found out that apparently he does think that I have endometriosis. He is an older doctor, and I think is more of the method of not giving a diagnosis until things are confirmed. That is one of the reasons I love my doctor – she fills me in on stages of her thinking (I’m sure not every thought! but enough so I know what we are looking for etc, which is something that helps me feel more comfortable). You would think I would be upset that I have endometriosis, but honestly, I knew that I had it, so it is really just a relief to have the medical world on board.

I can’t even begin to explain how anxious I was before my second appointment. The thought of talking to my doctor about my anxiety was causing me so much anxiety that I thought I was going to throw up. I should really stress that this is in NO way a reflection on her. It had absolutely nothing to do with her – I’m just so anxious about EVERYTHING that anything will cause me anxiety – especially when it involves turning around and facing the problem.

But I did it ! (talked to her….not threw up…)! Anyway, I made it through the appointment without crying too much. I’m not gonna lie, I was a bit of a blubbering, weepy, stuttering mess, but believe me – I could have been worse! She agreed that I had too much anxiety (and honestly may have been more alarmed that she was letting on – though that is just speculation on my part) and is on board to help me deal with things. She prescribed me some medication, which was so, so needed, and is planning on working with me as a counsellor too. I think I probably should have been talking to counsellors for quite a few years now, so I’m totally on board for that.

So strange as it is to say after getting two more diagnoses in one day, both the appointments went well. I don’t mean that they were buckets of fun, sunshine and rainbows – just that I am getting help for the problems that need addressing, which, at this point, is way more important than rainbows.

I haven’t been posting as often as I want to because I’ve been busy and exhausted. Either I’m not doing anything, or if I can make myself do something, it ends up being school work that is begging for completion. But here I am now! (Unfortunately still busy and exhausted, but with a bit of extra time today because of daylight savings time.)

Last week was pretty hellish. As ready as I was to give up on the inquiries into endometriosis, last week changed my mind. Unexpectedly, the crippling pain that started this whole diagnostic process came back with a vengeance. I think it was something like two out of seven days last week that I made it out of bed before 2pm. This was partially because I was exhausted from being in so much pain, and partially because it hurt like hell every time I moved. I literally swore loudly every time I had to move at all.

Obviously I missed a bunch of class, which, in turn, made me even more anxious. So that was not fun.

That specific pain has died down (for now), but now I’m terrified of it coming back unexpectedly. I’m going to see a gynaecologist tomorrow, so hopefully that will lead to something. I say that with reservation, as I am sceptical that anything fruitful is going to come of it. I should get my ultrasound results tomorrow though, because if he doesn’t have them, my other doctor will, and I am also seeing her tomorrow.

It is not ideal to have more than one appointment in one day, but my doctor was booked until mid-next-week, and I need to see her, so they found me an appointment tomorrow evening. The reason I’m going to talk to her is because I am so ridiculously anxious.

Anxiety has been a problem for me since I got sick years ago (honestly, you try not being anxious after your body is suddenly ravaged by crippling pain and fatigue!). The problem has varied in intensity over the years, with some intense peaks, but lately it is especially bad. It hasn’t interfered with my life so much as it has derailed it, and I need for that to stop.

In addition to constantly feeling anxious (which is mightily unpleasant and often downright unbearable), it is exhausting. The anxiety got so intense over the past few months that I ended up depressed. This may sound strange, but it was my body’s way of trying to halt the anxiety; I am less likely to get anxious about everything if I either don’t care about it, or am asleep.

Recently though, my body has changed tactics, instead making me loosely competent during the day, and an anxious mess at night. This results in considerable insomnia, and I gotta say – I preferred the extra sleeping!! One of the other aspects of this whole thing that is really driving me crazy is that I logically know that a lot, if not most, of what I’m worried about is not worthy of stress, but I’m anxious anyway. Grrr. Although, that really is the definition of anxiety, and what separates it from regular stress (which has a notable cause, and will disappear when the cause is removed).

What I’m trying to say is that, while I don’t relish the thought of new medication, my anxiety  has become enough (actually, considerably more than enough) of a problem that I need some help dealing with it. Hence the appointment tomorrow.

There is a funny side though: I’m anxious about talking to my doctor about anxiety and telling her that I’m anxious about taking anti-anxiety medicine. Seriously – craziness.

Oh! One last happy thing: I found a cookie mix that doesn’t use milk or soy!! Today I made oatmeal cookies and ate a cookie for the first time in months!!! (minus that one that I shouldn’t have eaten, but did, and then was incredibly ill…)

So I won’t actually know anything until I go back to the doctor. I’m going to see a gynaecologist next week, but I’m not sure if he will have my results or if I will need to make an additional appointment with my regular doctor. With all these appointments lately I feel like I’m playing some medical version of monopoly (Doctoropoly ??) except that no one has offered me $200 and the parking isn’t free (I actually walk to all my appointments – I just thought that was funny).

I was so frustrated and exhausted by all these tests that I wanted to just give up on the pursuit of this issue. Honestly, I can only get so many negative test results before I start to feel as if I’m some crazy over-reacting person. This morning though, I woke up with serious pelvis pain that has me bedridden. So clearly this is something that I need to figure out. Boo.

Have you noticed that I’ve been having a hard time lately? Because everyone else seems to have realized… I am used to no one knowing when I am not doing well, as none of my issues have any visible physical signs. Yet lately I’ve been so scattered and exhausted that most anyone close to me is concerned. Last time I got together with my two best friends, they both called the next day to make sure I was okay. Sigh. I’m being reminded of the benefits of invisible illness – it’s invisible, which allows you to pretend that nothing is wrong. When it gets to the point of being visible, I know that I need to stop pushing through symptoms, take time to rest, and figure out what is wrong.

The thing is, school is a full time job. Managing an illness is another. Investigating various medical issues is another. Then of course there are friends and other commitments (though clearly friends are the best part). So I have more on my plate than I can reasonable handle. On top of that, all of this has spun my already problematic anxiety issues out of control. I’m actually anxious about everything (which, I should mention, is also exhausting). It’s finally gotten to the point that I’m going to talk to my doctor about it. That is a big step for me because I have some strange and intense aversion to taking anti-anxiety medications. But even with me focusing on anti-anxiety measures of my own, I find that it is interfering with my life.

I’m pretty sure that this post has no logical connecting thread or idea. That’s what happens when I’m not feeling well. My brain gets a little scattered. So apologies for that, but I just wanted to let you know what was going on.

Do not despair, I’ll be okay. I have lots of people supporting me, and I’m working to solve any problems that I can. I think I’ll be in bed most of the day today, but honestly, books, tv, and laptop are all accessible from bed. Plus my bed is really comfy :)

So, while the test was pointless for me, I’ll give you a rundown in case anyone else needs this test. Knowing what to expect always makes the experience more pleasant.

Preparations: Two days in advance of the test, you must avoid eating foods with lactose or high fibre. Eight hours before you must stop eating, drinking and taking medications.

Beginning: First, you wash your mouth with mouthwash to get rid of any bacteria. Next you have to drink a disgusting mixture of lactose sugar and water. It looks like liquid white glue and tastes like chalk. It is not pleasant. Ew. Next you breathe into two bags, which act as control cases.

Middle: For the first two hours, every half-hour you have to breathe into a tin foil bag.For the last two hours, you only have to breathe in the bag every hour.

The doctors can then measure the level of hydrogen in your breathe. Apparently if you are lactose intolerant, the reactions in your intestines involve releasing hydrogen. By measuring these levels, the doctors can determine if you have the enzymes necessary to break down lactose.

Make sure you bring several forms of distraction for this portion of the test. The doctors need to measure your breathe over a period of four hours, which is a long time to twiddle your thumbs. The waiting was hard for me because it involved sitting for four hours in a really uncomfortable chair. It was made better by watching tv on my computer.

End: Eventually it is over and you get to take yourself home and eat for the first time in twelve hours. (Unless they stop to give you a Grammy for the symphony your stomach sang while crying out for food).

As medical tests go, it wasn’t bad. I appreciated that it was completely non-invasive. Admittedly, fasting and sitting uncomfortably for a long time was not fun, but I made it through.

While I had no symptoms at the hospital (other than hunger and sleepiness) I’ve been nauseous all afternoon and evening. I’m hoping it will go away soon. For now a bottle of Gravol sits nearby.

On to tomorrow and my first ultrasound.