Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How Do You Cope? Response to Quote from Trudi

Hi Sue,

Thanks for your comments

The difficulty I have with work is the exhaustion more than the pain. Due to the way the local government here assess sick leave, they would rather I be off for one period (even if it is months!) than just take a day off as and when I need it. Not much of an incentive to try and keep going! I've already had a written warning about my sick abscences, and if I have more than 3 periods off in a year (whether it is 3 seperate days, or months at a time!) then I can be disciplined for it. I got my diagnosis after my absence hearing, so informed HR that I had a reason for them, but they said that the written warning was made on the evidence they had at the time, and wouldn't take this into consideration

This is another reason I don't want to rush back to work too soon; if I have to go off sick again soon after they won't be impressed. Will have to see what the occupational health Dr says when I see him in Jan; there must be ways to work around this.

It's 5am here in the UK at the moment, and I am wide awake and in pain, despite taking pain meds, and 10mg temazepam! Not good I will be in bits tomorrow!!!

Emma.

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It's 5am here in the UK at the moment, and I am wide awake and in pain, despite taking pain meds, and 10mg temazepam! Not good I will be in bits tomorrow!!!

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Hang in there!

Coincidentally, I was still up at 5 am here in New York, (not unusual), working on a documentary with a scene filmed in your home town of Wales, looking for some appropriate bird sounds. I finally found some nice Chaffinch bird calls, you probably heard the real thing as the sun was coming up!

Hi Dow,

Didn't hear the birds, but as I have 3 cats, they probably steer clear of our garden (for health and safety reasons)!!!!

I'm hanging in there, not always easy, but then you all know that! Have my step children here tonight (Christmas Eve, I'm confused about the time difference!!), and can't wait to see their faces tomorrow morning! Christmas is so much more special when you have kids around, and although I have none of my own (due to medical issues) I am very lucky to have them and my neice and nephew

So tired tonight, just hoping I will sleep, otherwise Santa won't come!!!!!

Emma.

ps!!! What is the documentary you are working on in South Wales? I actually live in Newport, Gwent.

Emma.

No kids over here either, it was on my to-do list, but it just didn't seem to happen. But we do have four crazy dogs (white monkeys we call 'em) that will be keeping us plenty busy!

Santa will probably be happy to see someone else still awake if you can't sleep

Know what you mean, I have three cats, and the youngest is 5 months old! He is a little monster, but love him to bits He is going for his "op" in a few weeks time, am desperately hoping this will calm him down a bit!!!! My cats are my babies (I know, so sad!).

Hope you have a great Christmas!

Emma.

Gwent? Wow, that sounds like Lord of The Rings territory, where there would be giant tree people and gnomes..

The documentary is actually about the Zaballeen, a community in Cairo, where everybody survives by going through the garbage and recycling the materials. (They are not the jet-set.) It follows three teenage boys as they learn how to do this, and in one scene their school sends them to Wales, and they visit a modern recycling plant, and they see just how sophisticated the process can be. The movie will be called "Garbage Dreams" although I hate that title, I keep wanting it to be changed to "Zaballeen Dreams"

Sorry, didn't mean to derail this thread, rambling on about the Zaballeen...

I know you were talking about the disconnect between how you feel and how people perceive you, which for me is the toughest part of trying to deal with all these physical problems. I for one want people to make the effort to try and keep in touch with me, but I know that when they ask a simple question like "how ya doing?" they are not prepared to actually get the answer. So instead I just say either "fine" or lately I have started to just say "hanging in there." It's a real delicate balance, tell them too little, they will assume everything is fine, and I'll feel like I'm deceiving them, tell them too much, and risk that they will think that I'm no longer a participant in the world, and maybe they will stop including me in future activities.

A good example of this is about a year ago my sister invited me and my wife to go on a boat cruise with them. Forgetting for the moment the financial aspect of it, I was glad that we were asked. But it would have meant a long airplane ride, which would have been a nightmare in itself, and then hours and hours of sitting on a deck chair, all not good things for my SI joint and butt pain. Then I thought of my insomnia, and what it might be like be awake at 5 AM on a ship of probably drunken people, and then probably sleeping until I missed the morning limbo contest. No thanks!! But of course, I didn't want to say "Don't ask next time!!" But that is probably what will happen.

Same deal with work. I work freelance, so when I am offered a job, I'm always thinking, well, I can do this project, and do it well, but I keep trying to manage expectations. I have a home recording studio, so for the most part I can control my own hours. And my wife works with me, and she understands and that gets us through a lot. But sometimes I need to be in the city, and do a long day of recording, and those days are getting tougher and tougher, and the drive home is getting really difficult, and I am wiped out the next day.

Of course, the irony of all of this, as I start turning down jobs, it is getting perceived by some as that we are very busy and successful, so of course we are getting more job offers than ever!

Hope everyone is having a nice peaceful Christmas. Wasn't up for going out into the cold to get a tree this year, but did download a virtual one to my iPhone

hi emma,

now that you've explained your work situation, i can understand why you are not sure if you can keep working. that is a lot of pressure and stress. though i don't take off much time, just knowing i can if i have to, is reassuring. i don't know exactly what you do, and don't know how much you enjoy your job, but if i had to work under those circumstances, i'd probably find another job with more flexibility, if i still wanted to work. i do like to be able to work for all the obvious reasons and am just glad that the combination of my job and my health allow me to do so.

sue

i like a good documentary, will have to keep my eyes out for this one, let us know when it is available......

when people ask me how i'm doing, i usually say OK. i always thought that was an OK response. but its amazing how many people ask, "just OK?" then i either have to lie, which i will not do, or explain, or say, "yeh, just OK." i tend to give the third response thinking, "you really don't want to push me on this, because then i'll tell you a lot more than you bargained for." usually, people won't push when i say, "yeh, just OK." i think the social norm would be to lie on the second chance and say, "i'm fine." my husband used to say, "i'm alive" without any flack. i should try that or something else equally clever. the "i'm ok" definitely is not the way to go.

dow, i hope you can continue your work. i can see some of my work slipping; takes too long to get my papers written up for publication, may need to start foregoing meetings, as this past year, i went to two meetings where in June i was miserable walking around and in august i was either sitting in the meeting with an ice pack on either my SI, hamstring tendons, or feet, or laid up in the hotel room. it seems almost pointless to go under those conditions.

and that disconnect between how we look and how we feel. i have a book, "sick and tired of feeling sick and tired; living with invisible chronic illness". it really helped me to understand a lot of what i was feeling early on. a lot of times, when i look just fine but feel really awful, i often think of that SNL quote, "its better to look good than to feel good." not saying that i agree, just saying i find that whole thing rather amusing. i don't care so much what most people think, and i'm really lucky my husband totally gets it, but it has made it rather difficult with doctors.

sue