On twitter, two things have been going around recently; first is the above guide for pain, and second the #MyPainDay diaries tag. Upon request, and being a spoonie blog apt for awareness, I have decided to contribute over here.
This above guide is SO important. Many disabled and chronically ill folk play down pain BIG TIME. Regardless of if I complain at all or constantly, I can guarantee, I do this a lot, and many of my friends I’ve made in the community have admitted to doing this too. Hearing this from others and seeing this chart was very validating of my pain, and I’ve really been using it to ground myself recently. Yes, you are in pain, yes, you can complain. Do not invalidate your pain.
So, here goes the very short (in the sense of it only having 2 days) week 1 diary:
Friday 1st November.
7:30 am. Fibro’s catching up with me… getting out of bed this morning feels like a chore and I’m struggling to breathe. I’ve had hours and hours of uninterrupted sleep (thank god for my new sedative medication) but have woken up exhausted, in pain, struggling. After my slow attempt at getting ready, a sigh carries out of the house with m ready to take on the day. The cold has embraced my joints and the excruciating pain is killing me slowly, fast, all at once. Mostly, I’m exhausted. I feel guilty for being exhausted since the rest of my work team worked until midnight and I finished at good ol’ 5:30pm last night, but opening the shop 3 days in a row has totally caught up with me and I feel like sleeping for eternity. I push through, and make it into the shop ready for the day. Pain today is a 6, not bad.
2pm. My lunch hour finished half an hour ago and I truly am exhausted. This was not helped by rude customers am I the only one that gets really bogged down by them? Anxiety has hit me and I fel like taking the whole packet of my meds, but I keep going through. I love my job and very few customers are rude, so I don’t allow those two people to get me down. Why should I? 5.
5:30pm. Napping’s been on my mind for a while now. I am aching from simply living, and cannot wait to get into bed. I’m not sure if that is now from tiredness or pain. 5.
10pm. Time to leave! A nap has done me good but I am generally in agony. I’m just excited to greet on the coach to go to Cardiff!!! That city is my happy placer, and I’m going to see one of my favourite people,so this weekend is going to be amazing. 4.
10:15pm /// CW: Dislocation, Emeto
*Insert mental expletives here*
I am on the floor and don’t know how I got there. One minute I was walking and now I am in agony on the floor. I cannot move my ankle, but it is no longer in the right place. I try to slowly move my toes to start,and the rest of my lot and lower leg after but the pain causes me to throw up, multiple times. Eventually, I managed to hobble round the corner to the train station.. only to find out there is an issue with the trains. There. Are. No. Trains. How do you expect me to get to Cardiff??? Panic aside, I sit and drink almost a bottle of water, feeling sick once more. I am in agony and unable to weight bear. 9.
After a while load of train drama and Cardiff rescheduling etc (I would write it all but it has nothing to do with pain) I’m on the phone to my mum, crying. I can’t move3 from my seat in the station and throw up once more. 8.
I get back to my dad’s (he’s away and since I’m not long moved out, my bed is still there for me) as it’s closer than home and try to finish a programme I started on that television earlier. Any slight movement makes me unable to prevent myself from crying out in pain and I feel sick once more. I cannot focus on finding the programme, so put anything on for sound but the rest of the world is a haze and pain is the only thing I can register. I decide to turn off the TV, put the heating on and get into bed. I take some painkillers and my prescribed sedative tablets (the highest dosage I can- I’ve not needed to use this dose before). I am still in agony and only pray it gets me to sleep and fast. 9.
Saturday 2nd December.
Every thing from this morning was such a blur of pain and sleeping. I woke up with the pain still at an 8 and took my daily medications and more painkillers before falling back asleep for a few hours. I can’t even register the time. Even when I got up, I was totally bed bound and couldn’t weight bear any longer! I got hold of my mum who picked me up at some point in the afternoon and struggled home to hers in a high amount of pain. It was when I got coffee and tried to walk a mere 10m wth such pain that got me. Now I was struggling to walk and the crutches had to come out, and to top it off my bad hip and knee were in pain (lesser, but soon). Pain was an 8.
At this point, I decided A&E was the place I had to be.
I am in agony and there is a nurse prodding at me where I am in pain. Ow. Ow. OWWWW. I’ve been given more pain relief and advised to go down to x-ray.
My writing, now, seems very numb. My pain is so high today and injury centric, I am struggling to write about the pain. 8.
I have dislocated my ankle and ruined all the ligaments in the offending area. Thank you, EDS, for messing up yet another area of my body. I have been given a moon boot and it is really helping. Even when I weight bear,my pain is only a 7. General pain is a 6.
The boot is keeping my ankle and foot in the right place, and supporting my foot in the way my ligaments cannot at the moment. I am still in pain but I can now walk, get on with my day and face my daily struggles.
When speaking to my friends about this injury, I have joked. Everything from ironic ‘LOOOL’s at myself to talking about being a trendsetter with my boot. Why? The simple fact is I am disabled. Yes, today I am debilitated with a certain injury, and pain is more area-centric. But my Ehlers-Danlos causes me to frequently dislocate things (I dislocate my knee regularly, but am able to pop it back into place), be in pain all the time and crutches, a walking stick a chair… they’re all my friends. Stuff like this is quite frankly rubbish, however, I need to find a way to cope. I hate it, but my way f coping IS making joes about myself. I’ve got to take this stuff lightly, or it will bog me down to no end. And I have enough things bogging me down (shout it to my awful mental health, here).
(I shall include Sunday’s ‘Pain Day’ in Week 2’s diary next Sunday!)
This is my first ‘My Pain Day’ post. I am very involved with the spoonie community and on twitter did a poll for my spoonie and blogger friends on whether I should do a daily My Pain Day or something weekly on here. A mixture of on here, and both was voted for, so I’m posting it over here and this will be up on my twitter- compromise, right?
This first diary was a little unexpected as I planned to merely discuss my fibro, ME and EDS pains on-the-daily, but managed to let EDS screw me over. This time of year does not ever seem to be good for me; last year and three years ago, t’was my hip and this year my ankle. I pray that my hip stays intact (and, of course all my other body parts) and I can stay mostly off crutches!
It would be great to connect with other spoonies.
How’s your pain day been? I wish you all well.