Four years ago I was living with nausea, crippling anxiety, chronic pain, the need to go to the bathroom up to 30 times a day, plus a heart that would go to 140 beats per minute just standing and sometimes race off to 250+ when I was doing nothing at all, not even standing.
I honestly don’t know how I put up with it. My health was great as a child, then from my teens to 40s it was a slippery and long slope to the low of a few years ago.
I live with Endometriosis, Irritable Bowel Syndrome/Small Intestinal Bacterial Overgrowth, Painful Bladder Syndrome, Postural Orthostatic Tachycardia Syndrome, Pelvic Floor Dysfunction, A heart arrhythmia or maybe two, and Anxiety (in a range of flavours, including a phobia of vomiting that was pretty cruel under the circumstances).
Back then I couldn’t help feeling life without being so ill would be sunshine and roses. Even though logically I knew that was nonsense.
How is life here at the start of 2021?
Just now sat in my garden office out my window is indeed both sunshine and roses (that I planted) and on my desk a ginger cat which might be nicer than roses. At 65kgs – I am 15kgs above my low point. At least 10 of these kilograms were desperately needed. I lead a reasonably normal life with around one flare a week.
I am happy and grateful I am no longer in that dark space. I am proud of myself, for the hard work I put in. By which I do not mean that you can cure yourself with hard work. I am aware that there was more than a dollop of luck. If I had not been in a great health system with full insurance, I expect I would remain undiagnosed today. But I am proud that so ill, I kept researching and asking, and holding my health professionals to high standards, and that I managed to parent, and partner (clearly not so well at that as that didn’t last the healing journey) and complete a PhD.
I’m experiencing new things that I had not noticed in the thick of it. Boredom, even when doing things.
Eating past full and feeling horrible, something that was once impossible.
Feeling like wine as soon as it feels late afternoon ish. Feeling like sugar every minute of the day. Concern for the recession and the start of the world post COVID.
Life isn’t perfect.
It isn’t ever going to be and as I slip towards 50 (48 next week), I realise I don’t want it to be.
Some days when the cat has delivered me another live and traumatised baby animal that I have to kill, the letterbox a large bill, the dishes are pilled up and I promised no wine or sugar that day, then I’d kinda like something more perfect..
Would I go back? Not on your nelly. This imperfect life is mine and mine alone and I love it, even its rough corners.
What did change my life so much?
As I reflect back over the holiday period at how different my life is now. I realise I have never really told my healing story. The practical bits about what worked I mean, not the inspirational movie ready bit. I’ll do that when I find the team lol.
But first – let me say, that this is IN NO WAY a recommendation. I am not going to start selling the 5 steps to healing your chronic illness in six easy interest-free payments. There is no one size fits all.
It is also guesswork as I am a sample size of one, so I can not be scientific about which things worked and which didn’t.
Here we go
Here is my list of what I think were the tricks for me…
Getting the Mirena inserted. I was at first terrified this would make me worse (as it does for around half the women who try it), so held off for a year or more after it was recommended.
Pelvic Floor Rehabilitation. Talk about confronting, wowza. But also profound for pain. I still use it in flares now, actually, I am having one today and kicking back into the stretches and activities. A key one being rolling my bum on my roller where loads of tension sits. In the past the niggles I feel today would have reached agony before long, now I can usually head it off before it escalates.
Meditation, Hypnosis + Reiki. Reiki makes no scientific sense to me, but I love it and it really seemed to make a difference (I think I could even see in my Heart Rate Variability). Sometimes one needs to give over to the mystery and magic, even me – well at least if it is harmless.
Treatment for Small Intestinal Bacterial Overgrowth. I was able to learn about and seek help for this, due to having access to all the worlds science and growing skills to read its thick language (through my PhD). There are a few decades of research on the topic, that is only just .. So. Very. Slowly … trickling into the medical practice. In summary, it is likely that a large majority of those diagnosed with IBS have SIBO. The good news is SIBO is treatable. Albeit difficult to do and with a tendency to reoccur. Not to mention the antibiotics needed (if the herbs don’t work) are currently 750NZD and unfunded by any insurance. NB: I have four blogs from two international conferences I attended that are not currently posted anywhere. PM me if you want them.
Paying attention to the FODMAP load in my diet. I can now eat many foods but have to watch legumes. Plus if I eat too many vegetables things can go wrong (not ideal given my new gardening hobby). I bloat with apples etc, but that is mostly manageable. The legumes (and onions for that matter) on the other hand can trip me into a proper flare still.
Support of Facebook Groups. Rather than helping me heal perse, this helped me cope at my worst. Special shout out to Endo Perth Sisters who were amazing both online and face-to-face events. Something about being with women in the same situation was more profound than I can say. Especially when living away from my home country. They have gone on to win awards for their work, I miss them. I don’t think I have ever met a group of leaders so excepting and loving yet open and welcoming, but also soo clued up on the illness, science etc.
Last, but in no way least, anxiety medication has been a game-changer. I resisted all myadult life due to stigma, then started medication at my sickest. When I thought to stop (yes stigma again), my cardiologist recommended against it. As these meds are used off label for my heart issues, which had also improved. Isn’t it mad that stigma stopped me getting the relief that changed my life? I am not saying go medicate, but I am saying if its recommended think about if stigma is the reason you turn it down. This is such a complex issue, that I will leave it here as it deserves its own post.
There were also many things that helped with symptom management that I stopped as symptoms improved so not sure how they fit in, e.g. acupuncture and an endo peppermint potion for pain that I had to import from the US.
There is some kind of magic when one illness improves, the others do. In a similar way to the anti-magic of the opposite when you are so sick. I have done nothing specific for my bladder condition. However, I now get up once or twice a night to the previous 8 ish. I also noticed amongst other spoonies (those living with illness) most seemed to have more than one condition.
Ok,that was not the most entertaining of blogs, however, I felt for others and myself it was high time that I put fingers to keyboard on this. Do drop any questions you have below or two me directly.
Dr Rach x
Remember wherever you are at it is ALWAYS OK to say you are not OK and ask for help. I always hold and update occasionally a list of places to start.