One Day With EDS

As EDS Awareness Month (May) draws to a close, I thought I’d take an idea from @MortuaryReport on Twitter and mention every symptom I have in one day. Instead of a thread of Tweets, I’m going to write them out in this blog post. So, here goes:

As soon as I wake up, I am overcome with nausea and retching. I slowly turn over in bed, exhausted. I have to sit up slowly or I will get dizzy. My neck aches. 

I put one foot on the floor. I dread standing up on my feet as peripheral neuropathy in my soles means agony in every footstep. It feels like walking on razor blades. Even when I don’t walk, my soles alternately burn, tingle, go numb or ache. I am aware of them from the second I wake up until I finally fall asleep. 

I finally get up, and go wake up the children and get them dressed. They have their own constant issues due to EDS. But their story is not mine to tell. If they don’t have school, I can skip this part and things are a little easier. But today is a typical Monday morning during term time. 

I head downstairs to the kitchen. I walk slowly as I am very dizzy. I prepare breakfast. My fingers and wrists ache. I make myself a cup of tea as the thought of eating makes me feel sick. I take my stomach meds and my antihistamines. I no longer bother with painkillers as none of the ones I’ve tried make any difference. 

I let the dog out and get him some food. I retch multiple times from the smell of the dog food. I feel dizzy as I place the bowl on the ground. 

I make the kids school lunches. I get them into their shoes and coats. My husband walks them to school, with the dog. When he gets back, I make us both a coffee. I still haven’t managed to eat anything. 

Because I brought the dog for a thirty minute walk yesterday, my whole body aches more than usual. Every joint, every muscle, especially in my legs. I am exhausted. I crawl back into bed and doze for a couple of hours. 

Finally, around noon, I get dressed. I debate whether or not to have a shower. I decide against one, as I’m already dizzy and I’m just sitting down. On days like this, I have a tendency to faint in the shower. I grab clothes that are easy to get into, and go back downstairs. 

I am finally able to eat. A pot of toffee flavoured yoghurt and some dry crackers. I moisten the crackers in the yogurt to make them easier to swallow. Dysphagia means swallowing food can be an ordeal. But the saltiness of the crackers helps my nausea, so I’ve improvised this meal to try and suit all my issues. 

 I catch up on Twitter while eating, trying to distract myself both from the stomach pain and from the headache that’s starting. My neck still hurts so I have to be careful to keep adjusting the screen so I’m not straining my neck even more. I constantly shift in my seat as I cannot find a comfortable position. I end up spilling some of my food. I then go lie on the sofa, propped up, to try to digest some of the food. I still feel very very queasy. 

I slowly get up. I go into the kitchen and begin emptying the dishwasher. I have to go slowly and be careful when bending down so I don’t get dizzy. I also have to be careful when reaching up, as my shoulders are unstable and make it hard to put away the dishes that belong on high shelves. Some days this chore can take five minutes. Today it takes twenty as I need to sit down halfway through. 

My jaw aches as my TMJ disorder kicks in. I must have been clenching my teeth in my sleep again, as the jaw joint on my left side is ‘stuck’ in a clenched position. I massage it from the outside to try to free it. Eating has loosened it a little but it aches like mad. I consider putting a heat pack on it but that would mean getting up and finding one of my many heatpacks. I might do that later if the pain becomes worse. 

I start to fill the dishwasher with last night’s dirty dishes. I was too exhausted to do it then, but not sure I’m any better now. I turn the machine on and head upstairs. My children call our stairs ‘Mt. Everest’. It has sixteen steps. My left knee crunches sixteen times, each time sending shooting pain up my thigh. I head into my daughter’s room. I need to wash her bedclothes. I’m tempted to lie on her bed instead. I remove the dirty duvet cover, sheet and pillow cases. And then sit on the bed for five minutes. I head back doenstsirs and put the laundry on. I am exhausted again. I seem to have done something to my back. I think it’s my SI joint. I wriggle around and press it until it slips back where it belongs and feels better. 

I now attempt to make lunch. My husband is working from home today so I need to make lunch for the two of us. On days where he’s away, I don’t bother and just sip on a Fortisip nutritional supplement. I realise we’re out of bread. We often run out of stuff because my brain fog makes meal planning difficult. I find some tortilla wraps and make tuna wraps. I try to sit down while making them, as standing for more than a minute or two makes my peripheral neuropathy unbearable. Plus I get dizzy as my blood pressure plummets. I make a pot of tea and call my husband for lunch. 

I manage to eat a few bites. I need to chew a lot so that I’m actually able to swallow the food, but chewing sets off my TMJ pain. The pain has now combined with my neck pain to set off a headache. I give up with half the wrap remaining and decide to make it up later with a Fortisip. I go and lie down. My left hip has started to hurt and it’s excruciating. I get a heat pack and stick it in the microwave. I alternate it between my hip and my jaw. I sip my tea while resting. 

It is now time to collect the kids from school. I put the lead on the dog and head out. It’s only a five minute walk for my husband, but takes me (and kids) ten. My ankles give way a few times and I am lucky I don’t fall. I haven’t brought my cane, as I’m still embarrassed by using it in front of the other parents. My wrist hurts from holding the lead. I arrive at the school gate a few minutes early. I am wearing my raincoat as was cold when leaving the house. Everyone else is wearing t-shirts on such a sunny day. My face feels hot but my fingers and toes are like ice. 

I keep adjusting my posture, and shifting my weight from foot to foot. Standing still for any length of time effects me so badly. The kids finally arrive. I take their schoolbags and put one one each of my shoulders. The kids have trouble carrying their bags so I make this sacrifice for them. I’m annoyed by how heavy they are. The kids are exempt from homework so they ought to not have much in their bags. My shoulders and while back ache so much, with shooting pain up my neck. We walk home. Every footstep is agony. I am exhausted yet again. 

When I get home, I go upstairs and lie down in bed. I try to nap but the pain keeps me awake. I come back downstairs. As I know I will struggle to hang out the sheets and duvet cover, I turn the dryer on. My shoulders hurt, my neck hurts. And now my eyes too. 

My husband has bought me a box of dark chocolate mints as a wedding anniversary present. I nibble on these as the mint helps with the nausea and I need the calories. The soles of my feet feel like they are burning again. 

As we are now out of milk as well as bread, I head out to the supermarket. It’s a ten minute walk there, ten minutes back, and around ten to pick up the actual stuff and queue etc. It feels like the longest half hour of my life. Every footstep is agony. Again, I haven’t brought my cane. This time, I’ve simply forgotten it. Waves of nausea overwhelm me. I take slow deep breaths and make it home. I usually bring my wheelie shopping trolley but this time I didn’t, as I was just buying milk and bread. And some snacks for the kids. My shoulders ache so much that I regret this decision. 

I get home and turn the oven on. It’s nearly time to cook dinner. My knuckles ache, my wrists ache, my neck aches. I sit down for another rest. I slowly sip some water. I put the potatoes in the oven. And sit down again. I have to stand up to fry the steak. I’m seriously considering buying a stool for the kitchen. I prepare the children’s food. When the food is ready, I call the family. At this point I have a severe headache and no appetite. I nibble on the food as best I can. Most of it goes uneaten. I do drink a glass of red wine.  

I go and lie on the sofa again. I keep dozing off but get called often by the kids to help them with various things. I give them their meds. The dishes still need to be washed, but I usually have to sit for about an hour before I can face them. I remember that the bedclothes are now dry and need to be put back on my daughter’s bed before she can go to sleep. 

I go upstairs and slowly put the clean sheet on the bed. My knee has popped out of its socket while climbing the stairs. I sit down to put the clean pillowcase on the pillow. I rest for a while then grapple with the duvet cover. I collapse on the bed and doze off. But only for a few minutes as I’m in too much pain. 

I notice that my jaw is clenched again. I try to relax and unclench all my muscles. I go into the kitchen and fill the dishwasher. I wipe down the counters. I sweep the floor. All of these take ages and hurt so much to do. I’m done. At this stage, I can hardly move with the pain. I sip on a Fortisip, pushing past the nausea. I will spend the next few hours trying to lose myself with Twitter, then finally go to bed. 

And there you go. A fairly typical day. Not a ‘good’ day, but not the worst. Just a day in the life of someone with EDS. Though we are all different, I’m sure this will resonate with some of you. 

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