A day in the life of me and EDS

So i did a day in the life of anorexia and thought a day in the life of EDS (Ehlers Danlos Syndrome) would help other people understand the impact that it has on my life.  This is an average day; it doesn’t take into account bathing, doing things I enjoy, going anywhere other than work etc.

* * *

Midnight till 6.30am I sleep, or attempt to.  Sleep is interrupted every couple of hours by the need to go to the toilet and get a drink (yes, I understand the vicious cycle there but I wake up both desperate for a wee and desperate for a drink).  I will toss and turn all night.  Waking up each time I do as joints scream or poke at me.  Lifting the sheets is torture on my fingers.  That’s if I’m lucky.  My meds lead to frequent insomnia and the worst thing is when I am in too much pain to read either because I can’t ‘turn’ the page on my kindle or the brain fog means the words don’t make sense.  If I can read, I can’t do so for more than half an hour before pain takes over (who knew clicking the page turn button on a kindle would be so interruptive).  If it’s a bad night, I may dose off about 4am.

6.30-7.30 I have four alarms and a sunrise lamp which sounds like overkill but even then, from time to time, I will sleep through the lot of them.

7.30-7.45 If I have woken up by 7.30, it takes a good 15 minutes to convince myself to get out of bed.  It’s a bit scary.  Getting out of bed means i find out what damage I’ve done to myself my sleeping.  Did I knock my knee slightly out, did my hip end up in the wrong place, did I bend my wrists back on themselves, did I fully dislocate my shoulders?  I don’t want to face those answers at 7.45 in the morning!  I stumble to the bathroom, go to the toilet and wash my face.

7.50 I get dressed sitting down, the priority is comfort not how clothes look, I avoid buttons and avoid zips.  Getting dressed, handling the clothes is agony. I brush my hair which is cut so it’s super easy to maintain. On a bad day I might not bother with a brush.  I run dry shampoo through my hair (I wash my hair at most once a week so dry shampoo is essential) and grab the deodorant (pain and exhaustion limits the amount of baths or showers).

8.00 I take the meds which keep me going.  At the moment this is a multivitamin, super strong antihistamines, antidepressents, morphine, tramadol and senna (morphine and tramadol = constipation)

8.02 I battle with the Velcro on my splints as I wrestle them on.  It hurts.  Velcro can defeat my feeble fingers.  Quickly put on my boots (DMs to hold my feet and I’ve had to replace my beautiful lace up pair with a pair with a zip because my fingers can’t manage tying them up).

8.05 If I have time, brush my teeth. If not, I’ll swirl mouthwash or skip completely.

8.07 Grab crutch (optional) and leave the flat.  Lock the door using a key turner because even stupid little things are no longer possible.

8.10 Meet taxi. Spend £5 getting to work…

8.20 Head towards staff entrance.  Hope the disabled door opener works (doors at work are stupidly heavy).  Get the lift and slowly make it to my desk.

8.30 There’s a whole story about my work day, we’ll save that for another time

17.00 Taxi home. Another £5 down the drain.

17.20 Battle with the locks to get into the flat and collapse on sofa.

17.30 Remove splits and boots (this hurts) and take more meds

17.35 ‘make’ tea – throw precooked food in the oven and then battle with cutting it up once it’s cooked. Good days see me in the kitchen swearing at my hands as I struggle to cut my food.  Bad days result in eating with my fingers.  Even worse days, I can no longer use a fork to get food from plate to mouth and I struggle to do it with my fingers.

18.00 Eat in front of a dvd then lay on the sofa until I move to laying in my bed.

19.30 Final meds for the day.  Get undressed, more pain.  It’s very tempting to sleep in my clothes rather than go through the ordeal of getting undressed then dressed again in the morning… Get into bed, more pain.  I might be able to read for a few minutes.  By this point turning the page on my kindle is agony.

20.00 Most nights I’m asleep or heading to sleep by 8pm…

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