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 baaaaad day! :(

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Dan_Robbins
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PostSubject: baaaaad day! :(   Tue Oct 16, 2012 6:41 pm

Want to vent so sorry, if I don't vent here I will cry and that hurts my eyes and head so I don't want to do that! All my appointments are coming through on my busy days at work, obviously I should be pleased they are tryna sort me out but I'm loosing money! Im self employed, had yest and today off as I just felt too bad, I worry about the end of the month and I have no money to pay the bills and now I got to have time off Monday to see my opthamologist AGAIN! And trying to get a sooner appt with my neurologist as my appt is 3rd Dec and I am really worried about my sight its decreased so much in the past 3 weeks, the neuro clinics are held on a mondays and thursdays and have to call late wed or early mon to see if there's any cancellations-guess when my busiest days are!!!!????!!!!! Im tired of feeling poorly, down, confused, and generally not myself Im normally the life and soul and the organiser, I cant be bothered to even pluck my eyebrows, I just cant be bothered! My dad told me today that his friends daughter has IIH her reading was supposed to be 30 and hers read 90, she is fine on the diamox, hasnt had to have shunt or anything, had 3 LP and is coping fine. My reading was supposed to be 18-22 and mine was 35 and I feel like crap (excuse french) Why the different start numbers, arent all pressure readings supposed to be the same I dont get that!? But now I feel like I should be 'fine' but I'm not 'fine' im far from 'fine' ! I want a couple of glasses of wine, but can't do that as half glass of wine and my head is down the toilet pan. I want to go out bowling with my friends friday but can't do that as my back is killing me. Fed up is not the word....sorry to anyone thats read this, I need to 'man up' I guess!!
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pennyroyal
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PostSubject: Re: baaaaad day! :(   Tue Oct 16, 2012 8:09 pm

I don't think you need to man up at all. Like all IIHer's I think you are incredibly brave and going through something that most people can not even begin to imagine.
Last week I gave my job up. We have had to except hand outs from family and go and talk to the bank about reducing our mortgage payments - its horrendous and embarrassing but it had to be done. It was heartbreaking to think my illness had done that to my family but now its all done I can honestly say I feel better for it. The struggle was far far worse than actually making the changes. Its little things like not being able to afford to send my daughter to all the dancing classes she used to do that hurts. It might be that you need to be honest and look at what changes you need to make - or it may be that you can work with the hospital to find practical ways round it. Just don't give up hope. As far as money goes it might be worth talking to your GP and the citizens advice people. I managed to get Disability Living allowance and the GP reckons now I'm not working there is other stuff available. I let my pride get in the way for far too long. My advise would be don't struggle on if there is other options. I don't know how it fits with being self employed but its worth investigating I guess.
As for all the numbers - I guess everyone is different. 35 is high and I'm not surprised you feel like crap. The drugs don't work the same for everyone either.
And as for Friday night - could you not go for just a short time? I tend to find that turning up for half an hour and showing my face makes me feel like a human being and at least in touch with the real world. That way people don't forget who you are and you don't get knackered out. I would recommend setting a time limit and sticking to it though so you don't get carried away.
Hope things start looking up for you Smile
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medmisfit
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PostSubject: Re: baaaaad day! :(   Tue Oct 16, 2012 9:31 pm

Never apologize for venting..we've all been there in one form or another! And, Penny's right..levels are different for everyone and everyone responds differently to meds/treatment, so you really can't compare yourself to others. Also remember, they use 2 different scales in measuring opening pressure. If they're measuring in cm then 90 is VERY high (I've actually never had anyone use an instrument that measured that high), but it's within normal limits if measuring in mm (it would be 9cm, which would make sense for someone on Diamox). Obviously, if her opening pressure is 90cm now..her Diamox is NOT working. It's also possible her primary symptoms aren't related to pain. My first bout of IIH I just lost vision and didn't have any pain. I guess I'm just saying it's all a matter of perspective. I would think the real issue would be that you're Dad is trying to compare you to someone else, which seems to be making you feel like you have to "man up". No one can understand unless they've experienced it, and I'm sure he's just trying to qualify it somehow..measure and make sense of it, so he can find a solution. I think it's a guy brain thing..lol.

As far as work and social life..you just have to take it one day at a time. I'm sure it's very different being self- employed, but you can only do what you can do. You may have to rely on family, friends, programs for awhile, but hopefully you're finding the right treatment and getting better in the meantime. I'm sure your true friends understand your limitations and will just enjoy hanging out with you when you're feeling up to it. It can completely suck, but you have to take care of yourself right now..there'll be plenty of time for friends and work once your IIH is under control!

Hang in there!!!
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Julie
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Sophiasmom
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PostSubject: Re: baaaaad day! :(   Tue Oct 16, 2012 10:06 pm

I'm so sorry Dan (Dani? Danielle?);
this illness takes everything away from you that you ever loved. look at my picture; that is the true me but I can't go to those places anymore. (and my ICP is only 220-230 on my LPs although I know it goes higher, so the number doesn't mean anything! I'm still disabled) I don't expect to go anywhere or do anything fun. I am too chemically sensitive and I just get sick so I stay home. I study and write, and plan my next move to figure out how to beat this. (when I do, I'll let you all know about it) I think I was primed for this level of isolation because I have been an air force wife for many years and we've had to move around so I am used to not having friends around anyway. but no one understands so it's just painful to try to deal with the interaction. it ends up being easier to be alone. I'm so sorry you are so frustrated, I don't know what to say. you definitely will need to make some adjustments. it may be that what you will have to do is apply for disability. many of us are just not well enough to work. the sooner you apply, the sooner you can start receiving benefits and sort out the money angle. if your expenses are greater than what you are bringing in, being self employed, you may want to stop the hemorrhage now. in the US we have to be off work for 6 months before benefits start. anyway, I hope that you get things sorted out with your doctors and you are one of the lucky ones who responds to the therapy you choose.
Hang in there!
Deb
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baaaaad day! :(

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