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.

Becoming a babe with a mobility aid

Over the last 18 months I’ve found my mobility to be deteriorating at quite a fast pace. I’ve found it really hard to accept that I now need to use mobility aids to get around.

I’ve always been one of them girls who loves to dress up, do full make up and wear the most fabulous high heels I could find. For my university graduation my parents even bought me a pair of Louboutins. Now I live in trainers and flat shoes.

I’ve never really thought of myself as a vain person though. I was forever going into lectures with unwashed hair and no make up on when my fatigue started to get the better of me.

My pains have reached new heights which means I completely rely on the help of mobility aids most days. When I first realised this, I struggled a lot with leaving the house using my stick, if I was getting a picture taken I would hide it. I felt some sort of strange unfounded guilt that I was too young for a walking stick and that I shouldn’t need it at the age of 26-28.

I worried that because I don’t need them all the time people would think I was faking it. I felt like people were looking at me if I could walk a few feet without them. Eventually I reached a ‘f**k it’ mentality in regards to using them, it’s nobody’s business but mine.

It took me a long time to realise how amazing these things are and embrace them as a part of me. I wouldn’t be able to get out half as much as I do without a mobility aid. I looked for fancy walking sticks for ages online but failed miserably. It appears disabled people can’t have much individuality or express themselves when it comes to their mobility aids (we want to feel pretty too). It’s like they’re all aimed at older people. Pretty shit but I’m sure someone will rectify this soon (I’ve seen a few companies that look as though they might soon be making them 🤞🏻).

I found one walking stick that has a glow in the dark handle and another with cats on. I have my zebra print smart crutches and most recently I’ve acquired a wheelchair.

Though I am completely confident in using mobility aids I still get the odd set back. Sometimes you hear the odd person comment stupid things like, ‘she’s too young/pretty to need that stick.’ If you could all just mind your own business people, that would be nice. Illnesses don’t discriminate on age or looks and if I want to put a pretty dress on to myself feel better, I shall.

I feel a lot more like myself now using them. I can feel beautiful with a mobility aid, you can still be disabled and sexy or cute. They’re like an extension of me that gives me so much freedom and I take one with me wherever I go! They even help me to balance doing physio and pilates around the house.

If you go down to the woods today, remember where the bloody hell you left your car.

On Sunday it was a lovely morning, not too hot for my PoTS, so I decided to go for a walk in Delamere Forest in Cheshire with my parents.

I used to adore hiking so it felt so nice to be able to go for a stroll in the fresh air and escape the four walls of my house. My joints and muscle strength has really improved due to all the pilates I had been doing, even though I was just coming out of a two week gastroparesis flare, I felt good.

My family, me and my walking stick set off about half 10, parked the car on the road and started strolling. When I got tired we stopped off at the visitors centre for a quick coffee, which we found with ease.

From here things slowly started to go downhill. We walked off thinking we were heading in the general direction of the car, we followed a route so thought we would get back straightforwardly. That was until the visitors centre and a Gruffalo statue reappeared about half an hour later and we realised we were literally walking in circles.

Me and the Gruffalo the first time round before the pain set in.

We changed direction and passed a swamp we’d never seen before and that was when I knew the situation was slowly deteriorating. My back, ankle, hips and hand were now hurting at this point from walking with my walking stick and covering too much distance. I’d spent the last two weeks like a wrapped up lemon on the couch, ‘help me’ was slowly running through my mind. Panic about my stomach also set in at this point as I’m still on a lot of laxatives and an accident in that department would have just been the icing on the tragic cake.

Me and my Dad thought the car was in opposite directions and then we somehow ended up on the main road… not the one we were actually parked on.

My legs were now weak, I was starving and my back was flaring. We walked about another 20 minutes, I technically stormed it hobbling like a woman on a mission until we got on the right road. I was by this point huffing, swearing under my breath and wishing my Mum would hurry up so we could get there quicker. I knew if I stopped it was game over, my water had also ran out and my PoTS wasn’t exactly happy with how hot I was getting. We got back to the car and I physically collapsed like a sack of spuds in the front seat.

Thanks to me accidentally overdoing it, I’m in a full blown pain flare. I have heat packs on, with a fan on me and a cooling headband on my neck. It’s so bad I’ve had to take morphine and I can barely walk with the agony in my back.

Life lesson: if you’re chronically sick, put a marker on google maps as to where you parked the car you fucking moron 😂.

Holidaying with Ehlers Danlos – disabled travel diary 1- Gran Canaria

I’ve recently just got back from a family holiday to Gran Canaria which was amazing but was obviously not without it’s problems. I highly recommend going with family/friends/partners who fully understand your illness in depth and what can go wrong. There’s nothing worse than being unwell in a foreign country and having no one to help you out. I always end up taking at least one trip to the pharmacy or doctor, because I’m fucking tragic, this time it was for pain patches which are literally 10 times better than anything you’d get over the counter here. I meant to bring some home with me but left it last minute and the pharmacy was closed.

Flying is never great when you have joint problems as being cramped in a small space unable to move about, for me personally, causes a lot of issues. It’s a 4 hour flight so for starters there’s the pain side of things. My hips are bad and holding them still for too long or sitting in the wrong position causes so much pain, that by the time I get off the plane I’m struggling to walk on my own without my stick or a crutch. We paid for extra legroom seats so I could move about a bit and stretch out. This is great, however, these seats are usually near to an emergency exit and if they see you have reduced mobility they won’t allow you to sit there. On the way out we had no issues, but on check in on the return flight they spotted my crutches and said we may be asked to move. This resulted in me stealthily putting the crutches as small as they would go and sneaking them on. We were walking as normally as possible for three people walking too close together with the bloody things wedged between us. Luckily it worked.

Apparently if you can’t eat gluten, on some planes, you’re just expected to starve for the duration of the flight, so I strongly advise taking your own food or eating the lovely overpriced food in the airport. I’m not sure with other airlines but all Tui had was a tiny bag of popcorn, thanks guys! If you’re like me and need daily laxatives I don’t advise taking them the day before or the same day you fly as no one wants to be fighting to get in one of them small cubicles in a hurry, or stinking out half the plane haha. Sometimes it literally just can’t be helped, my bowel randomly kicks off, but I always try my best to reduce the risk of that situation. For my irrigation system the hospital issued me with it’s own ‘passport’ to make sure we got it through without a problem, also tablets kept in the boxes so they can see what it is you’re taking and you don’t look like a smuggler. I clearly look like one anyway as I always get my hands and hips swabbed for no reason haha.

It seemed the best idea to get a taxi to the hotel from the airport avoiding sitting for hours on one of them stupid transfer coaches that wait for what seems like an eternity for other flights to land.

We chose the resort of Melanores in Gran Canaria as we’ve been there before in a different hotel. The ground is flat and well paved which is great so I can get around easily and if I needed a wheelchair we still could have got out to the beach, the restaurants and the bars. We stayed in the Lopesan Baobab resort where they honestly couldn’t have done more for us. They gave me a full (random) breakfast and had a full gluten free menu for me to pick my evening meal from that changed daily. I live for pizza and that was always on there with whatever toppings you wanted. They always gave you far too much but it was so good! The only down side was that a lot of the sunbeds are on gravely sand, so they’re a bit tricky to get to with reduced mobility but someone does come around to take drinks orders so once you’re settled on a sunbed, there’s not much need to move.

I actually took a trip to the waterpark which I must admit I was slightly shitting myself going to incase I popped a joint or just landed at the bottom of a slide in a destroyed heap. I found the slides you sit in an inflatable of any type were fine but I took all the skin off my elbow on one without and I could feel my joints slowly taking a beating. Even they did a gluten free hotdog and there were cats everywhere which always brightens up my day.

Aqualand waterpark

The sun is a great healer of all things pain related I find and I literally wanted to be left there to start a new life in the sun. My PoTS can be a bit of a pain, but I make sure I drink water with a hydration tab in (pictured below) and at least 2 bottles of water a day to stay hydrated, especially when consuming a lot of alcohol. Otherwise I’m dizzy 24/7. Some tablets can cause increased sun exposure which I learnt the hard way the year before. Only putting factor 20 on lead to me burning the whole of the back of my body. It blistered from my shoulders to my legs and I ended up full of scabs with me running into shady patches for the rest of the week looking a right dick, even the sun on my clothes absolutely killed.

Hydration tabs

I had the most amazing time and would recommend there to anyone! We went out almost every night and though I was on my walking stick most of the time it was so easy to get around. If I just said ‘sin gluten’ in 90% of the places they could cater for me and were completely clued up on allergies/intolerances. The pool was huge so I managed a swim most days which kept up my exercise regime and my mood.