My TERRIBLE brain fog is now just brain mist. Time to celebrate!

Following my excision surgery a few months ago I am generally feeling much better. By no means perfect, and I have found that my adenomyosis is much louder now that it isn’t being drowned out by endometriosis pain (but that is a story for another time). 

One of the biggest changes I have noticed post-op is to my energy levels, my endo-fatigue has been dramatically reduced, which I’m so pleased about as it was having such a hugely detrimental impact on my life. A knock-on-effect of this also appears to be that my ‘brain fog’ (you know, that terrible feeling that you brain has been replaced with cotton wool which makes forming any type of coherent thought neigh impossible)  has all but disappeared. It’s more of a ‘brain mist’ now I’d say. Admittedly, being off work and having loads of time to just rest and recuperate has probably helped a lot in this area too.

To celebrate its welcome absence, I have decided to list some of the most stupid and/or hilarious things I had done in the last few years because of brain fog (and in homage to this excellent post on the February Stars blog that really cheered me up when brain fog was greatly upsetting me). Enjoy!

brain fog

01/ Turning off the lights in our bedroom for us to go to sleep, immediately forgetting I’d done this, and shouting: ”Mr B, I think we’ve had a power cut, the light has gone out for NO REASON!” His face was a picture.

02/ My mum sent me to a fabric shop to buy some ribbons for a gift she wanted to wrap. I’ve been to this shop hundreds of times since childhood. I completely forgot how to get there and wondered around our town center completely lost and in a daze for 30 minutes, before having to ask a stranger for directions.

lost

03/ Forgetting the word ‘limitations’ when trying to write the ‘limitations section’ of my PhD, and subsequently having to describe the word ‘Taboo’ style to my colleagues in attempt to identify it.

04/ Unpacking my shopping and putting the milk in our cupboard under the sink and kitchen towels in the fridge.

05/ Attempting to get ready for work in the morning and beginning to cleanse my face with nail varnish remover! It’s a good job I started with my cheek and not my eye or this site could be about my experience of living with blindness.

I was very much like that classic scene in Home Alone where Kevin uses aftershave.

I was very much like that classic scene in Home Alone where Kevin uses aftershave.

06/ Locking myself out of my car, and having to phone my husband and/or colleagues to come and rescue me. Three times in one year! My husband was so annoyed last time as he had a two hour drive to come and pick me up, and had to leave work. Oops!

07/ Five lost debit and credit cards in one year- and having to explain to my bank that I am not doing it deliberately.

08/ Coming across as a slightly mental pathological liar on more than one occasion. This actual conversation I had in a support group is a pretty good example…Me: I use this awesome app several times a day to track my symptoms. Friend: That sounds great, what’s the app called? Me: <Long Pause> I don’t know.

09/ Numerous ‘shower fails’ including forgetting to shampoo my wet hair or forgetting to wash out shampoo and/or conditioner, and having to look rather unkempt for the rest of the day.

10/ The ability to perform basic maths has frequently deluded me. At dinner with a friend and she asks if I want to split the £30 bill- I get my phone out to use the calculator as she looks at me like ‘really?!’.

So there you have it. I’d love to hear some of your more hilarious brain fog moments too- I could always do with a laugh! Also, if you’ve got any tips for helping to manage this horrible symptom please do share it here.

Love,

Claire

The art of waiting: The best way to prepare for an appointment with an endometriosis specialist.

Having endometriosis seems to be an excellent lesson in developing patience. A lot of waiting around seems to be involved with this disease: waiting for medical appointments, waiting to see if a new treatment regime works, waiting to see whether you can have a baby, waiting for adjustments to be put in place at work, etc.

I’m still not very skilled in the patience department, waiting is not my forte. It;s makes me jittery and anxious. I don’t think I’ve ever heard to three bleeps of the microwave that tells you it has finished. What can I say, I’m a do-er.

The lack of progress in taking control of and managing my disease was really getting to me for a while, but since the new year I have tried to fill the void by being slightly more proactive. It took much foot stamping and pleading, but I finally have an appointment booked in BSGE accredited endometriosis centre at the beginning of March, so that is some progress at least. I’m really excited to finally discuss my situation with an endometriosis expert.

The waiting time involved in this has got me thinking about the best way to prepare for such appointments. For some reason, despite being intimately acquainted with the effects of endometriosis on my body, all this information just seems to evaporated out of my head the moment I enter a doctor’s office, and I never really do justice to how unwell I have been. Maybe it’s some weird British stiff upper lip thing. To address this, one thing I have started doing since the new year is keeping a pain and symptoms diary, using the ‘my pain diary app’ for iphones. I thought it might be useful to show my consultant something ‘concrete’ about how the disease affects my life, since my saying ”I am in agony and exhausted most of the time” doesn’t seem to have penetrated the psyches of most doctors I have visited before. I’m quite interested to see whether this approach impacts upon the quality and outcome of my appointment. I will keep you all posted on that!

My Pain Diary tracks the symptoms of my endometriosis and their intensity.

My Pain Diary tracks the symptoms of my endometriosis and their intensity.

I also made this diagram to show precisely where I experience endometriosis pain, and I am hoping this might be useful in ensuring that each of these areas are addressed in some way by the end of my consultation. My shoulder pain, thanks to the endometriosis on my diaphragm, is particularly debilitating, but so far I haven’t found anything to help with this.

Where I experience endometriosis pain.

Where I experience endometriosis pain.

I’ve also contemplated keeping a food diary as well, but I think that might be overkill at the moment. I sometimes feel that somebody should be paying me to do this stuff, the amount of time I put into it. 😀

So, I would like to know, how do your prepare for meetings with your endometriosis specialist? Do you use any technologies to do this, and do they help? Tips and advice in this area greatly received. Also, I’d like to hear your thought on coping with the waiting and uncertainty that comes with endometriosis. 

Love,
Claire
xxx