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A first attempt at shopping

October 23, 2011

I was supposed to have physio in London on thursday, but Wednesday night was an awful one. Sleepless, irritable, and full of bad POTS symptoms. Part of me knew what was on its way, but strangely I made it through the night.

Thursday started in a bad way, I was even more shaky than normal, and the symptoms from the previous night were still plaguing me. Eventually, and rather annoyingly, I broke out into a seizure at 11:30 – roughly 30mins before the transport ambulance was due to take me to London for the physio.

Although I can stop them myself  and take them head on with a very positive attitude (they are afterall a part of my life now), no amount of positivity or acceptance can make the following 12hrs easy. My legs are like jelly and I remain in a lot of joint and muscle pain.

Last time I had a seizure, I did what any normal person would do – I rested. Big mistake! A mere 3 days without exercising and I was back to square one, stiff joints and very potsy after the smallest of tasks. I can honestly see how EDS can put people in wheelchairs!

I obviously cancelled the appointment for physio (I could barely stand) and allowed myself the remainder of the day to rest up. Friday morning I pushed through the pain and fatigue to do a set of physio exercises (this was nauseating to say the least) and I ended the day with a small walk. The amount of willpower it took to go was unbelievable, not to mention the determination it took to actually walk once I arrived at the woods.

Yesterday was a little easier and today despite the warmer weather, im just about over the effects of the seizure. A quicker turnaround albeit a harder one to achieve.

I am slowly getting used to routines. Routines for washing, routines for walking, routines for bending down to pick something up or for reaching up. Routines for eating, for going to bed, even for putting socks on! Everything takes a concious amount of mental input. Its disheartening to live like this, but some of it is slowly becoming second nature and starting to feel natural.

Each day begins with downing water and a set of physio exercises (and that’s all before im even out of bed!) I wouldn’t say things have become any easier, in fact there is little change at all to the chest pains, palpitations, pots attacks and head aches. but what has improved is my ability to put it to the back of my mind, to ignore it and attempt some form of normality by pushing through it.

Last weekend I went to an outdoor clothing store. By the time we got there I was really bad, sweating, nauseous; my flight or fight response was going loopy – my brain gets easily confused – “Should I make Liam stand here in a state of shock, shaking, petrified of the invisible bear, or should I pump his body full of adrenaline, and get his heart racing in case we need to fight or run from said invisible bear” – all of these powerful emotions and I only wanted to walk into a bloody shop!!

I made it in and headed straight for the toilets, I had convulsions in my legs and I tried my best to put thoughts of a seizure to one side. The toilets were warm and my symptoms plummeted, I headed back out and laid flat on the store floor.

10mins later, with the blood back in my brain, I had overcome the worst of the attack and I steadily got up to “shop” not that I could be arsed with anything other than going home, but I persevered and found walking around helped to keep the blood in the upper body…

Stop. Look at something. Begin to feel faint. March over to the other side of the store. Pretend to look at something. March back to continue looking at the previous item.

All of this is new to me, but I hope that in a few months time, I will be doing it automatically, and although the pots is still there and still causing havoc, I hope to be able to use these techniques to plod my way through daily life.

I’m heading up north to the Lake District next Saturday. I have no idea how I will cope, how little, or how much I will be able to do. But one thing is for certain. I will make the most of it!

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