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…

If it doubt, talk about the weather

4am wind whips

round my flat rattling walls

permeating dreams

I’m not sure what the weather is like with you but here we have blustery gales ripping up trees, closing roads and causing trouble.  Wind is one of my least favourite weathers.  I tried to explain why to someone a few years ago and they didn’t get it.  Maybe it was me, maybe I didn’t explain it well enough, but I feel like I am being attacked by the wind.  I want to retreat, run away, hide from the enemy.  I want to pull a duvet over my head and block out the howls with a pillow.  I take the weather personally.

Ehlers Danlos: Stuff which makes my days a bit better

I haven’t talked much about my chronic pain on here, mostly because all the mental illness stuff was more pressing and distressing, but my pain has got worse as my anorexia has got better.  I have a condition which is known as Ehlers Danlos Syndrome or Hypermobility Syndrome (so professionals say they’re the same, some don’t…).  It affects my collagen which is all through your body and means I have joint pain, dislocations, subluxions, exhaustion and other stuff.
 
It’s very frustrating (and painful!) but I was thinking last night (as I couldn’t sleep) about all the things I use to make my days a bit easier.  I thought about how long it had taken me to come across things and how it might be helpful to someone else who is just starting their chronic pain journey to have a list.
So, here is my list of stuff which makes my days a bit better.  Take from it what you want and feel free to suggest your own.
 
  • Meds! Enough said really.  Talk to your GP, make sure you’re on the right ones.  Pain is not a good thing, you shouldn’t push through it regardless of what annoying people say.  Pain is shit and it needs to be managed.
  • Kindle – I can’t hold books but I love reading.  It took me a long time to get to the point of giving in and buying one.  I love paper books and it isn’t the same on a kindle.  But having a kindle is better than not reading.  Main tip would be to think about what you want to use the kindle for.  I choose the absolute lightest and bought it second hand.  You can get classics for free and amazon does daily deals for kindle so you can pick up some bargains.  Also keep an eye out for seasonal sales.  I believe you can also work around the amazon thing and buy books from other companies if you don’t want to be tied to amazon.  Also, excellent for holidays!
  • Tablet – some people will buy a tablet instead of a kindle but for me, having them separate is important.  I can’t read my tablet in bed.  Again, like with the kindle, I went for the lightest which gives most screen.  It’s a Sony Xperia.  Again, think about what you want it for.  I wanted mine to write notes on, watch Netflix etc.  I think it’s probably apps that will make a tablet successful.  I’ve got evernote for note taking and it also has a speech to text function (this isn’t great in terms of getting all the words right but I’m hoping it will learn and improve as new versions come out).  You can also access the notes from a computer which means the notes I take at work can be checked when I’m at my PC.  There are probably other apps, just have a play with them and see what works. A lot of people will suggest you buy a case (same for the kindle) but I haven’t.  This feels a little reckless but if I buy a case it will add to the weight and that will add to my pain and then I won’t use the tablet.  I do have a peel off screen protector though.
  • Tablet stand – because you’ll hurt your neck if you keep looking at it flat on the table.  Also excellent for propping the tablet up to watch Netflix in bed!
  • Bears – as in teddy bears, not grizzly bears.  Sometimes you just need a hug.  Also, bears are excellent for propping kindles against in bed and I use them to help position me when I sleep.  If I’m allowed to sleep as I want, I pull my shoulders out of place but having my arms around a bear means I don’t.  I also have a donkey pillow thingy which as the description suggests, doubles as a pillow.
  • Triangle pillows – possibly called maternity pillows or something else less descriptive.  Helpful in propping you up and sleeping with one means when I fling my arms over my head, there is something there to stop them going too far and dislocating.
  • Blackboard – I have a little owl shaped blackboard which I use to keep a list of things I need help with.  I suck at asking for help.  I don’t like doing it and I generally remember just after someone has left.  The blackboard means I don’t have to ask directly, I don’t forget and it lets people make a choice.  They can choose what they do to help, if they want to do anything at all.  If it says I need help changing the bed and my friend hates doing that, they don’t have to offer.  Or they could choose something else to help me with.
  • Pens – the thicker the better.  There are lots of different kinds and you’ll probably need to experiment with what works for you.  I found PenAgain worked for me.
  • Food processor – mine has lots of useful functions including a slicer, grater, whisker, dough hook and general mixer.  It’s also dishwasher proof so I use it a lot more since getting a dishwasher!
  • Splints – with medical advice, these can help.  Mine make a huge difference.  For my wrists, the difference is between constant tear inducing agony and grit your teeth and bear it pain.  Again, it’s finding what works for you.  Generally they are given to you by an OT but if, like me, you’re struggling with the medical system, you can get your own online.  Again, medical advice is good as sometimes they’re advised, sometimes they aren’t.  I always wear my wrist splints when I’m out the house and the Velcro sticks to things and gets irritating, as do the questions, so I wear thin cotton wrist warmers over them.
  • Jar and bottle opener – I use dysom ones.  I also keep a small one in my bag for opening bottles of drink when I’m out and about.  If you’re struggling, ask a stranger.  Yes it’s hard but it’s better than dehydration or enduring the pain of pushing too hard.
  • Key turner thingy – you attach your keys and it gives you a piece of plastic about 1 inch by 5 inches to hold onto instead of the key.  This is a terrible description but it’s a helpful piece of kit!
  • Keeping spare keys in my shed – brain fog is fun.  You put keys in your oven and food in the dishwasher.  But being locked out of your house is not fun.  I’m lucky, I have a shed and I’ve attached a combination lock to it and keep spare keys in there.  It also comes in handy if friends are popping by and you can’t get to the door.  Just try to remember the combination!
  • Bus pass – for ages and ages I thought I couldn’t get a bus pass because I’m not on any benefits.  I was wrong!  You can get one with a drs note saying that you can’t walk very far.  And it has been amazing.  The freedom is fantastic!  In York I can use it after 9 on a weekday or anytime on a weekend.  It allows me to just pop somewhere if I want.  I can get the bus home from the train station (which is about 600metres away from my home) without feeling awful about the wasted money.  I can get the bus to the coast for free!  Which means I don’t have to worry about getting there and not being able to do anything more than sit on a bench.  I don’t have to do loads to justify the expense.  All in all, I love my bus pass.  You can get one through your local council.
  • Travel mug – I’ve had many travel mugs over the years, all of which have leaked or not kept the drink warm.  Then I discovered contigo autoseal travel mugs.  They keep hot drinks hot for hours (I often add a bit of cold water so I stand a chance of being able to drink them at some point!) and they only open if you keep your finger on a button.  It’s not too hard to press and I’ve dropped my mug on numerous occasions and it’s not spilt and is still working fine.  Even better than a travel mug is a travel mug of hot chocolate.  Particularly good if you tend to forget about drinks or doze off.  Some are dishwasher safe and some aren’t.
  • DMs – as in Doc Martens.  I have found a brand of footwear which fits, supports my ankles and doesn’t cover me in blisters and I plan to stick with them forever.  DMs might not do it for you, but make sure to get supportive and comfortable shoes.  If you find a brand that’s good, stick with it.
  • Mattress topper – a cheap way to get the memory foam experience!  I had a horrible mattress in a rented property which I couldn’t change.  It was wrecking my body and destroying any chance of sleep.  Then I got a memory foam mattress topper and everything was better!  I’m not saying it will cure you, but it has made a significant difference to me.  The only thing to note is that it will add an inch or so to your mattress height so you might want to invest in some deeper bed sheets as well.
  • Electric blankets – I have two.  One for my bed which I am in love with and one that is more portable.  The bed one has nine settings, extra foot warmth, duel control (in case you share a bed with someone who doesn’t freeze) and can be left on overnight.  The last being the best thing about it.  I also have a small electric blanket, about two foot square, which i can have on my lap on the sofa or at work.  Just be careful not to get tangled in the cables!
  • Microwave heat pack – in case you don’t have a plug socket nearby or want something more discrete.  Great for specific joints.  You can get them with or without lavender.
  • Stick on heat packs – curaheat heat packs stick on your clothes and are good for shoulders etc where you’d struggle to keep a microwavable heat pack.  They last 12 hours and the pound shop often has branded ones.  Also very good for holidays etc as they are small and don’t require electricity.
  • Twitter – good for finding other people with the same condition, share tips and understanding.  Also good for asking for advice and I have to say, I use it to sound off…  It helps.  It’s also good for connecting to real life friends who you can’t see as much as you’d like.  It helps me feel more connected to the world as I’m laying on my sofa.
  • Friends – I hate to say this but chronic pain may mean you lose some friends.  It is hard to deal with but for me, it’s shown who my real friends are.  They are the people who don’t care about pushing you round a shopping centre, who cook meals for your freezer, who invite themselves round for coffee, who check in when you’ve been absent from twitter.  They are the people who buy you a second hand dishwasher and fit it for you.  They are the people you can go months without seeing and still fit comfortably together when you do catch up.  They are the people who take time to know what you can and can’t do and who offer to do things before you ask.  They are the people who will open a bottle of drink without needing an explanation or even a conversation.  So yes, I’ve lost friends, but I think chronic pain has made me appreciate my real friends so much more.  At the end of the day, I have limited energy and I want to spend that with people who I care about.
 
I am sure there are lots of other things which I will remember as soon as I press send but this is the key stuff I have around me.