I have to tell you all that are still able to work, live your daily lives and live through this, you have my deepest respect. My EM is nowhere near as bad as some of yours (Alina, mads.) but it’s bad enough that its def put a halt on my normal daily life and screwed up my sleep schedule. So for those of you that are able to to still do what you need to do, my hats off to you. Here I am lagging on doing housework, at the ER about once a month, and doing endless research not to mention having the laundry pile up and my house a disaster, and did I mention becoming a prisoner of my own home? And it just amazes me that most of you are able to push on through you daily lives! Respect!
I am so sorry Laurent85. I understand how it feels to be a prisoner in your own home. This is how I refer to it as well. Funny thing is before this I was a flight attendant and spent 4 days a week minimum if I wasn't out and about on my off time away from home. Now I only leave for doctors appointments and if lucky a quick 5 -10 minutes at my local grocery store if I am lucky.
I hope you don't feel as if you are failing in any way because others are still able to work and play away from home. It isn't that they are stronger or better in any way. Not everyone has the same severity of EM and they are able to do more without severe flaring. Some people can still sit in a 70 degree room without awful flares and can continue desk jobs or activities out side the home unless it gets warmer ie 75-80 before they flare or if they walk too much. When you can't even sit in a normal room temperature room without severe pain you shouldn't be attempting to do so. It isn't fair to you.
I am proud of my self for continuing to do what I can do and not just giving up entirely. I keep my house around 60 degrees maybe 55- 58 if I know I am going to try and do more than usual. I then do things around the house that need doing in 5- 10 increments at a time. Then I sit with my feet up a while and do that again and again throughout the day. Sure I can't keep my home like I would prefer at that pace but I feel good just doing as much as I am able to do. My husband will come home and if I had an extra productive day I will excitedly tell him all I have done like WOW look what I did!!! Proud as a peacock when a normal person could of done the same thing in about an hour! HA!
It sounds as if you are doing things like myself.....as much as you can and that is all that can be expected. It is nice of you to tip your hat to those that can still do so much but don't forget to tip your hat at yourself too for handling this so well and doing what you can. These things you do are still accomplishments.
I also think of being on house arrest! I can take ages to do things, for instance: if I go upstairs to get more than one thing and forget one, I can't immediately go back; I have to either wait or ask someone to get it if there is someone around. It's really frustrating but I agree with Alina - we should be proud of what we can accomplish; and comparing ourselves with others isn't generally I good idea (but I admit to also thinking that Alina and Mads have it much worse than I do and do much more!).
You touched another very important point - doing things despite the flares. I've wondered if each flare might not be slowly damaging the affected areas. I'm getting worse and try to avoid flaring but it's not always possible (especially now that they spontaneously appear during the night without an obvious trigger). Does anyone know if this happens?
I tip my hat to all of you :)
Tarsus, that is something that does concern me too. This constant veering from freezing to burning can’t be doing any part of me any good and head flares feel as if my brain is being boiled. I am proud of myself in general for keeping calm in spite of being so limited in what I can do, especially now in Winter when half the night is spent out of bed in a freezing house, trying to cool down enough to return to bed. I do admire people who go running and playing competitive sports (whether they have EM or not.Lol) but I also admire those who work to their limit even if it is no more than getting out of bed and dealing with the management of theircondition to the best of their ability.
To a certain extent I can attempt to avoid flares by not exerting myself once we are well into the afternoon and doing all the usual keeping cool but not too cool, but EM has a will of its own and there is no way to outwit it, particularly as you say during the night. I have hardly slept the last three nights so what am I doing typing at well past my bedtime …
I shift between admiring runners and thinking they're slightly insane ;)
I have to practice that keeping calm thing, especially as stress seems to worsen EM (which is in itself stressful :P).
The skin on my feet has deteriorated so much, all flaky white from the fan and from the expansion+contraction I guess, and with groups of tiny red dots (damaged blood vessels I expect).
Hardly sleeping this week too, it is mostly done during the morning. Hope you start sleeping better somehow!
You may not run but you are an incredibly active and caring moderator in this forum, thank you!
Hope you find some relief. Nice that we have this forum to reach out to each other~
Thanks Tarsius. The group needs mods of course but it is our amazing members who make this forum so worthwhile:)
Also true :)
Laurent85 I really appreciate this post right now!! I have been having a terrible couple weeks and I’m feeling very frustrated pushing through my daily routines and having that feeling of not getting enough done. Thank you for the respect and support! Thanks to Alina for the reply also to remind me that everything done is an accomplishment. I forget that sometimes. Reading what you ladies cope with is very humbling and makes me realize I’m lucky to have the level of function I have right now. Thank you, thank you all for that.
Now for my rant: I’m working 30 hours a week doing behavioral support for kids, I have two kids that are my regular clients who make up those hours and I work with them at school. I love the work but being in the school environment is hard on me because I have a compromised immune system from AS medicine (enbrel) which is a immunosuppressant. I’ve been on a rollarcoaster of bronchitis and sinus infections and colds that just wont stop since October. I stopped taking the enbrel temporarily on advice of my family doc (rheumy is ok with it, I checked) to allow antibiotics to work better. I have had so many antibiotics I feel poisoned. My stomach is awful… yeast infections… ugh. I’ve been on steroids on top of many other cold meds and I am just extremely frustrated. Since stopping the enbrel both my AS and EM are acting up and my flares are worse and more frequent (the enbrel works to supress them somehow, a welcome side effect of taking it). I still do not feel any better sinus and chest wise. My ribs are sore from coughing for so long now. I am just wishing for relief on one front.