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Posted 7/21/2009 5:06 PM (GMT 0)
I already have several diagnoses, but lead a relatively normal life; however, I now find I have had an old one come back to haunt me - rheumatoid arthritis - and with it something that none of my folks seem to have heard of Enthesopathy, which is going to destroy my tendons and land me in a wheelchair. During the day I can cope with it and it all seems new but bearable, but come the evening when I'm in bed and just about to go to sleep I feel I want to scream hysterically and am in the most unbelievable panic. My head is saying no no no!!! I can not bear this, I'm going mad I shut my eyes to sleep and they snap open in sheer panic of what is really happening to me and I am absolutely terrified, can't swallow, mouth all dry, and sweat in fear of what is going on here. I live alone and although it may sound pathetic, have a soft toy mouse I call Wilbur, who is quite cute, and who I squeeze and squeeze for some comfort until my medication sends me off to sleep (NOT sleeping pills - got addicted and came off them again). It is very worrying. During the day I can think 'a wheelchair won't be so bad', but at night I am freaking out in my head and wish I could just die but don't know who to tell about this, as effectively, no one can say 'never mind, you're not REALLY going in a wheelchair, so don't worry.'

Any ideas? idea

Posted 7/21/2009 5:17 PM (GMT 0)
((((Cordelia-Mary)))) So sorry to hear you have gotten this rotten diagnosis. Have you spoken with your family doctor about something for your anxiety? The reason I ask is I have a chronic illness myself (Crohns Disease), and due to my illness is why I started developing anxiety. I take Xanax and it is very helpful when my anxiety and worry wants to get the best of me. It is a fast acting med and helps to quiet my thoughts and spirit and help me to relax some.

And another thought I had, could you get a pet? I know living alone is causing you alot of worry, and having a pet might help you to not feel as alone. Just a thought!

Hugs
Gail*Nanners*
Posted 7/21/2009 6:35 PM (GMT 0)
Thank you for a quick reply :-) makes you feel not alone here. Actually I have a cat who is great company but doesn't like being held too tight, just stroked and picked up occasionally; she was from an animal sanctuary, and is a bit nervous still of me until she can trust I'm not going to hurt her. Telling the doctor is a good idea, which I havent done yet but will do. It seems just in those few moments before you drop-off that everything seems magnified and you really feel you're going mad and just can't cope and proper rest and sleep is so important to get through the next day. Thank you again for your response, much appreciated xxx
Posted 7/21/2009 6:50 PM (GMT 0)

Cordelia-Mary

Hey there sweetie, are you talking Reactive arthritis? I am so sorry to hear this and I think this early in your dx you have a right to feel anxious and I can understand why you feel panicky at night.  It is hard to turn off our thoughts at bedtime and just go to sleep.

I agree with talking to your physician to see if you can get something for anxiety.  Also whatever you are taking at bedtime.........can the medicine be increased a bit.  Perhaps take your medicine earlier in the evening and not right before bed?  You may be doing this already.

How about a local support group for arthritis, anything in your area that you could get to.

I know when you have a chronic illness life changes but I believe in you and know you will be OK.  I do not mean to belittle your dx at all.  I just feel like you will fight to stay as mobile as you can and if the wheel chair happens you will deal with it.

We are always here for you and you have my prayers.

Gentle Hugs to you Cordelia

Kitt

Posted 7/21/2009 7:08 PM (GMT 0)
hi there Cordelia-Mary

im so sorry to hear about your diagnosis as well...I love Nanners' idea about a pet! my mom works with a lady that is in a wheelchair (this lady is a teacher -- a really good one!) and she has one of those special help dogs. they're really amazing...he's ridiculously smart and does stuff like opens that door for her and gets the phone when its ringing! plus hes adorable and loves her to pieces...
She got him for free too because of whatever it is that she has...sorry i forget what it is, but she's completely functional other than being in a wheelchair...i'll ask my mom about it if you want and see if there's something you could apply for to get one too :) they get along with cats too because they're really really well trained.

I know that panicy feeling at night..but i promise it gets better. I think everybody is right when they say you should speak to your doctor, sometimes we just need a little extra help :)


I used to also get that feeling where i thought i wanted to die...well it's not so much wanting to die as it is not wanting to live the way life was going...but please trust me - it's going to be okay. Everything always gets better. any adjustment is hard especially adjusting to being in a wheelchair but you will adjust to it and it wont always be such a horrifying idea to you. it just takes time hunny, but you'll get there.
Posted 7/21/2009 7:42 PM (GMT 0)
Wow!! What can I say? This is valuable support for me and I really feel lifted. Worried you would all say I was on the wrong forum, but in some ways the panic is harder to deal with than as you say, the real thing that's going on, as your mind just seems to run away with you of its own accord. Yes, Kitt, it is Reactive RA with generalised enthesopathy. Most people go 'Oh yeah' when you mention RA, and then draw a blank at the enthesopathy bit, and go 'enthe what???' then some try to be know-it-alls and say 'your tendons will calcify and your joints set rock hard' and it's like 'hey, thanks, I REALLY needed that information!' then evening comes and the nightmares begin..... I see my rheumy on 29th July with this new development and hope a) shall have some fingernails left b) she will have some really bright ideas as to treatment and c) will have calmed down a bit and paid heed to all your useful comments and suggestions which are so welcome. I do have a super supportive church as well, which is a real comfort, and feel that in my time of trouble SOMETHING led me to find this site and thank goodness for that. Thanks all xxx
Posted 7/22/2009 4:51 AM (GMT 0)
let us know how it goes with your rheumy cordelia :) i hope she has really bright ideas as to treatment as well !

it's true about the anxiety being worse than "the real thing"....but in a sense that's a good thing, because we have some control over our minds (though it might not feel like it all the time), and once you can get a good handel on the panic things really start to look up!
Ancient Yogi's said that the mind controls the body and the breath controls the mind....probably why deep-breathing is so encouraged in times of anxiety...so keep on taking those deep breaths cordelia! hope youre getting a good nights sleep right now!
Posted 7/22/2009 12:08 PM (GMT 0)
Sure did! A real GOOD nights rest - cat on the bed and still there in the morning and I slept til it got light. I told myself that I WILL beat this and I will. Each day is different, but have had a bit more energy to do things last day or so and at night have concentrated on what I have achieved that day, taken a deep breath, and decided what I shall achieve the next day too and must try and keep it up. This has also felt like having a virtual friend by the bed, who is there with sensible advice to look at any time I need it, at the press of a button: what more can anyone ask? Thank you all very much for simply being there and understanding me.
Posted 7/22/2009 1:23 PM (GMT 0)

Good Morning Cordelia-Mary

I am so glad to log on this morning and see you had a good night.  I slept well until 0600 when the phone rang and someone hung up.  Then 10 minutes later it rang again.  rolleyes   I don't mind if I get some good rest but not being able to get to sleep or waking up with anxiety is my downfall.

I am so glad to hear you have a good support group with your church.  That is awesome and there are so many wonderful people in the world wanting to help out and give to people in need.  I have learned to accept help graciously when I am down and when I can I give back to someone else.

HW is a wonderful place to come to for support and caring from the great members.   I have found the support, validation and encouragement that I receive here, to be so helpful and healing.

I am glad you have an appointment with your  rheumy and I hope she does come up with a good plan for you.

You are in my thoughts and prayers. Bless you.

Kitt

Posted 7/22/2009 2:09 PM (GMT 0)
HI Cordelia-Mary,

Glad to hear you did have a good nights rest. I was reluctant to post as I know little of your DX. But can totally understand the anxiety. Sorry I can not add any words of comfort or understanding in that department. But I can for the anxiety!

I will say welcome. These guys here are great. I came here not very long ago. And because of the wonderful words I have recieved from everyone here. I have less anxiety, depression and panic attacks. And I have these new friends to thank for it.

Anxiety can be a big pita. Sometimes we just get over run in our thoughts. They "consume" us. I have to now sleep with the t.v on. I have to have something to keep my mind from running wild. Which happens if I do not have the t.v. on. I tried about 2 weeks ago to sleep in our bedroom without the t.v. It took me 3 hours to fall asleep and it was a very restful nap.

Sometimes, reading a book that you totally enjoy helps. As your mind can "play" that while you try and rest. Usually romance novels, a couple of Stephen Kings, I can read. And Dean Koontz. All used to help me fall asleep. They are so good that my mind would play those in my head instead of worrying about other stuff. If the anxiety started to show its head. I would just focus harder on the book. (Hubby had to proof read the books , making sure they were not to harsh for me to read)
I also do a picture- breathing technique. Picture a place you love. And focus breathing. You do not let your mind wonder. You keep your picture in focus and concentrate on breathing.
I have to becarefull with this one. It relaxes me so much I can fall asleep at anytime.

I hope you find your little 'nitch" that can help you relax and ease your thoughts.

Take Care
Cary-Ann
Posted 7/23/2009 8:29 AM (GMT 0)
Oh dear!! Thanks for all that, but this morning from 5.15am I awoke sweating and terrified, shaking and shivering. Sunk off to sleep beautifully last night then this morning woke and felt scared out of my wits - the cat leaped off the bed wondering why I was howling. I cry like some little kid with nightmares. I rang the doc's as soon as it was open and have an appt just when I wanted it and shall make sure I get something to help. I haven't had anything like this panic before and just feeling panic makes you.......panic!! I have RA,Enthesopathy (no, I didn't know what it was either :-) , destroys the tendons) and CFS and on and on Zzzzz! I wrote this morning to someone on here who was feeling very down, that if we offered what we had to someone else, like a pretzel, they'd say 'no thank you,' so what on earth makes some people who DON'T understand think that we said 'Oh yes please, thanks!' like we must be nuts or something. Thank God for this site and the kindness it brings. I'm sure that at the bottom of this panic is the worry about facing a wheelchair, but when it happens, I believe now, that as sure as night follows day, SOMEONE will be here for me and will understand the fear and talk me through it. Thank you for making me feel I matter, you know what I mean - sounds pathetic and I'm not at all, but I hate upsetting the friends I have who come to see me and remain bright, but on here, everything is understood. Thank you so much xxxxx
Posted 7/23/2009 6:59 PM (GMT 0)
Do you think a second opinion on the diagnosis is needed? That's the first thing that came to my mind.

Do keep hope and stay positive. Our minds can make us sick and so I know our minds can heal. I would also research your diagnosis. There may be alternative ways to prolong the wheelchair and any pain you may be feeling.
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