Brain fog life 🧠

As with many chronic illnesses, one of the lovely things that comes along with Ehlers Danlos is brain fog. Throw some drowsy meds in the mix and I can literally forget what I’m saying mid sentence.

The last few weeks have been particularly foggy thanks to having to increase my Gabapentin. I have a really bad back at the moment and I’m awaiting some MRI test results that may take a while. In addition to this I’ve been really suffering with nerve pain in my stomach known as Allodynia, sometimes even my clothes touching my skin physically hurts.

One of the suggestions given was to increase the Gabapentin to a higher dose. I gradually upped it over a period of two weeks until I was pretty much at the maximum dose. It all seemed fine at first until I started noticing myself staring blankly at walls in some kind of weird trance. I would be talking to my Mum and then mid sentence would have absolutely no idea what I was saying or what the entire conversation was about. Luckily due to an increase in physio and exercise, my pain levels are at a more manageable level and I’ve been able to reduce the Gabapentin back down to my original dose.

Another thing that exacerbates my brain fog is daring to leave the house and have a life. I end up with severe chronic fatigue from overdoing it, I struggle to know when I’ve been out long enough. Sometimes the fatigue and brain fog is so bad I’ll spend days afterwards in bed watching mind numbing TV. My most recent binge was new episodes of catfish. (seriously who has the energy to live a second life? I barely have enough energy for living my own)

I always have brain fog to some extent. When it’s particularly bad I’ve found I couldn’t possibly read a book without going over the same sentence about 10 times because I’m not taking it in. I can also never remember if I’ve taken my meds, my Mum has to sort them out into pill boxes for me so I don’t get mixed up.

My brain fog has made me say and do weird and wonderful things, I have thanked a cash ATM machine on more than one occasion. Quite recently I managed to put my coat on inside out and walk around the shops. It probably wouldn’t be so bad if the lining wasn’t a different colour, with all the stitching hanging out.

I think sometimes I can come across quite rude when I’m having one of my foggiest days. I can be listening to someone talk and my brain takes me off somewhere else mid serious conversation and I’ll just say something along the lines of, ‘oh that’s what I needed to do, go and brush the cat.’ It’s not that I’m not interested, my minds just floated off of it’s own accord.

The other really annoying symptom is forgetting what I’ve walked into a room for/forgetting what I’m doing in the middle of doing it. After using a lot of energy climbing the stairs, it’s really frustrating not knowing what you’ve actually climbed them for. Especially when you get back down, it comes back to you and you have to use even more of your already minuscule amount of energy on a return trip.

I may say the wrong words a lot and have no idea what you’re talking about even though I was definitely there, but I promise I’m trying to listen. It’s probably a hell of a lot more frustrating for me than it is for you, so please if you could just have a little bit of patience, that’d be great.

Things I took for granted before I was chronically sick. Number 1: shopping

I’ve always had a love for shopping, in uni I could often be found on long breaks in Liverpool city centre trying on and buying all kinds of new clothes. I used to love hitting up the sales of a weekend to find something cute with high heels for a night out or even some new gym gear.

Alright so I shouldn’t always be shopping, when I’m having a bipolar manic episode I tend to go on shopping binges and spend all my money. I have to be careful and try to figure out what mood I’m in before I begin (easier said than done). I recently spent £80 in the range on arts and crafts supplies I didn’t need and my Mum had to come with me after work to take them back.

I’ve never really been a fan of making online purchases because I can never gauge the sizing. My legs are never the right length in jumpsuits and I end up with a massive camel toe or my boobs are too big for the size of my waist. It’s always been a sending back nightmare, there’s nothing worse than companies that charge you for the privilege of making returns with their poorly made/sized items 🙄.

So recently as my health has deteriorated further and I have a lot of time on my hands, a few times I’ve thought to myself, ‘jump in the car and go for a shop.’ As you will know if you’ve read my previous posts I require a mobility aid to get around. This can be more of a hindrance than I ever imagined.

If I’m just using a regular walking stick or cane, I can get around quite easily and can use one hand to look at clothes or food I want to purchase. However, if I use a stick for long periods of time my hand, wrist and back start to ache.

I generally need my smart crutches. I took them into Liverpool with me over the weekend for the first time properly and realised how hard it is to shop with them. I can’t reach up to the higher racks without them digging into my arms. They are bulky and get in the way, I caught clothing in them while browsing and pulled things off the coat hangers without realising. It’s embarrassing and a struggle to pick them back up off the floor. I had my parents with me which kind of helped, but they obviously can’t browse everything and know what I want.

Trying on shoes is frustrating as I need to try and balance my crutches somewhere while I sit down. My bad days are especially hard as I struggle with bending down. I’ve realised wearing lace up trainers is a no go when shoe shopping, it’s too painful to keep trying to open them, I end up with a bad back and stiff and painful fingers.

This is the same for food shopping, I’ve done it both in my wheelchair and on my crutches. In my wheelchair I literally can’t see anything higher than my eye-line. With being gluten free I need to be able to reach the always high up bread and it’s impossible without having someone to help me out. On top of this I can’t push a trolley and balancing a basket on my crutch is all well and good until it gets heavy and puts my off balance.

My crutches are too bulky for my car boot and so have to go on the back seat. If someone parks too close to my car I can’t get them back in. This sends me into a bit of a stress and panic frenzy. My blue badge got refused and I’m waiting to re-apply. I’m hoping that I’ll be able to get a car with a larger boot at some point soon.

That aside, I can’t drive anywhere if I’m taking morphine or my shoulder is bad, finding someone to take me until recently has been such a difficult task. My Mum has now given up work to be my full time carer and without her I’d literally be housebound and have no freedom at the moment.

I’ll never take the little things I can actually do for granted again as you never know when they’ll be taken away.

Curing chronic illness boredom

Being at home all day is an actual struggle. There’s nothing worse than staring at the same four walls all day, every day. Often made even worse by people saying stupid shit like, ‘I’d love to have your life’ ‘it must be so nice to not have to get up and go to work’ etc. Fine mate, I’ll tell you what, let’s see how you feel waking up every single day in pain, feeling nauseous, being constantly tired, with stomach cramps from hell and that’s just part of it, let’s see how you get on 🙃.

Here are a few of the things I personally use as both pain distraction techniques and things to keep me busy so my minds not going insane. Focusing on something really helps me during a manic episode, it takes my mind off me wanting to self destruct.

1. Jigsaw puzzles. Sounds boring and like something that just old women do, but I absolutely love doing them. It keeps my mind active and it’s also pretty good to keep my mind from focusing on how much pain I’m in for a short while!

To increase difficulty levels get a cat. Mine loves to pull it apart.

2. Reading. Okay so I can’t always read because my mind doesn’t want to focus. I love a good book but I also love a good trashy fiction novel I don’t have to fully concentrate on. I have an array of books that’s focus level dependant (obviously once I start one I have to try and stick with it). From classics, to self help books, to the absolute bizarre.

These are a selection of my most recent purchases.

3. Painting. As you are about to see I’m no Picasso. I just find brush strokes very soothing.

Shit art all the way!

4. Sequin art. Turns out when you’re in a lot of pain sticking pins in things works wonders to take your mind off it.

Here’s one I made earlier..

5. Pilates/yoga/stretching/any exercise. I know not everyone can do a lot of exercise and I’m not advising it for everyone but honestly a little bit goes a long way for me personally. I feel so much happier, full of endorphins and like I’ve achieved something!

6. Animals. Finally if you have a pet, they can really be the best therapy. I feel like my cat can sense when I’m sick and always comes and sits with me, giving me some much needed comfort and attention. Plus they never judge when you can’t get out your blanket or your bed. She’s saved my life a few times by just being there and calming me down so for her I’ll be forever grateful 💕

Love her more than life itself.

Dating with an invisible, chronic illness

Dating in this day and age is hard enough without dealing with a chronic and mental illness. I’m chronically single to go along with it. Not that I haven’t been on a few dates, but lack of understanding because my illness is invisible for the most part fucking sucks. Warning this contains a fair bit of bowel talk so now would be a time to stop reading if it’s too much information for you.

I play down my symptoms a lot because I feel shame I really shouldn’t feel or I’ll pretend I’m fine and not tell them too much info about my illness because it’s the first time meeting them. (probably stupidly a bit scared they’ll think I’m a trainwreck and steer clear)

So let’s start with an example date:

I make a plan to meet someone, I have to plan how I’m getting there. Can I drive or am I on meds that forbid it? Am I well enough to get the train? Do I need my crutches? Should I shed out for a taxi? I’ve previously had an incident on the train where I’ve really needed to go the loo and the boy didn’t believe I needed to get off the train and it resulted in an accident with me legging it home from the station, greaaat.

So say I’ve got there and we go for food. I can’t have gluten so is the place gluten free safe? Been on a date and accidentally ended up with gluten in my food, swelled up like a balloon and looked six months pregnant. Couldn’t stop vomiting and had to rush home. Sometimes my gastroparesis flares up, this means I can’t even eat at all, so let’s do something else.

Instead maybe do an activity. So instead of me being completely honest I sometimes end up in situations doing activities I really shouldn’t be doing. Let’s go rock climbing and bamm I’ve dislocated a shoulder or I’m just in bed for the next few days with pain and fatigue. Sometimes it’s worth it, but not when you’ve just met someone. I do love doing stuff like this, it just needs a bit of planning. Probably not go hiking either.

Drinks. Well yes we’ll just have a couple. There’s a slight problem with this in the fact it can trigger mania in my bipolar and I’ll start refusing to stop drinking and go home. Best case scenario, we have the best night full of laughter and drunkeness, worst case scenario, I run off somewhere with a head full of mad ideas, they leave me to it, put myself in danger and my Mum has to come and fetch me hahaha. I’ve told boys before about this and they’ve bought me too many drinks anyway. I don’t have the capacity to say no, as it always seems a great idea to me.

So if I’ve been dating someone a while and they want me to stay over.. For starters we have the issue of my medication, real problem if I don’t have it with me. I need to take my meds regularly for pain, my stomach, my head, my bowel. This is just a days medication:

Then we move onto my bowel. It’s slow and doesn’t move on it’s own. I take tablets for this that are included in that photo but I also have the hell that is my irrigation system. I have to use this once a day to manually get my poo out haha. There is no way I’m taking this bad boy out with me:

Obviously I’m not saying it’s impossible, but dating was so much easier before all this came along. It makes me miss the simplicity of my old life and realise the concerns I used to have are completely irrelevant and menial in comparison. I know I’ll get myself back out there one day but jeez it’s hard to be completely honest to strangers and guess what their reaction will be.

I’m well aware there’s someone out there who’ll completely accept me, but it’s just weeding through the ones that don’t understand the fact I’m too tired some days to go out. That I can’t do everything they can do, even if I look like I can. Just because you can’t see my illness doesn’t mean it’s not there and I’m not sat in pain, I’ve just got really good at faking being fine.