Re: sick and tired of being sick and tired
Hi Catherine. I don't think that it really matters how great one's life is and how "easy" it might be. The fact is that you have this very frustrating neurological problem. It doesn't matter how long you've had it or if you have come to terms with having it. I think that you have accepted it. I have. I still think that we repeat all the steps or stages of mourning or grieving over something that we've lost. (Where is Delaine when I need her? She is so much better at this than I am.) At least I do. I just cycle through things again every so often. I get sad about my health and what I've lost and then I get frustrated and depressed and then I accept things and then I do fine for a time but I do seem to keep cycling through the different stages. It might be that way over something else even if we didn't have BEB.
I'm not even making much sense to myself but I did want you to know that I understand and I'm glad that you wrote it down. I am jealous of your summer cottage, though. :-)
Some things you can get away from but for most of us, BEB is not one of them. It's always there. Front and center.
Re: sick and tired of being sick and tired
Hi Catherine, welcome back. We all count our blessings on this bb, especially for living in the wonderful countries that we come from - after all we could live in Afghanistan! But sometimes, not only do we have focal dystonias, but we get other stuff to contend with and this sure is the place to vent about it all. That cold sore on your cornea must be very painful to deal with, no wonder you are sick and tired of being sick and tired!I'm somewhat in that boat as well - your lard/nutmeg neck wrap really helped to stop the coughing I had at night (thanks for the recipe). But I've been coughing all day every day since December 25th - now I'm getting reflux problems on top of that - so one lot of `stuff' comes down to the throat, the other lot of `stuff' goes up to the throat and I'm miserable and scared when I can't breathe because of it. I've been to the doctor 3 times and now have to get an upper stomach x-ray for hiatus hernia, type, problems. We could all do with a stress leave of absence from focal dystonias - what a relief that would be! Hang in there Catherine - its great to have you back. Hugs June in Toronto (beb/meige)
Re: sick and tired /June
June, it's hard to imagine that you have been coughing all day every day for over 3 months now. Your chest must hurt constantly and your throat must be completely raw. What did your Dr. say is the cause of this?
After a month or two of this you might have tried a different Dr., since it looks that you current Dr. wasn't in a hurry to get to the bottom of this. I hope the upcoming tests will reveal the cause and with proper treatment lead to a speedy recovery.Best Wishes. Christel in Ca.
Re: sick and tired /Christel
Thanks Christel - I have been to two different doctors. The first one was just at a walk-in clinic as this all first started on Christmas Day and my doctor's office was not open for the whole week! I had an antibiotic first time around - it helped a bit for a while. Then I went to my own doctor and she said anti-biotics would not help at all and gave me a cortison nose spray - this at least got things flowing!. Now I have this reflux/type problem as well, and the two combined have made it scary - so I went to my doctor again just yesterday. She has arranged for upper stomach xrays and medication for the reflux until the diagnosis comes in. I really believe my doctor is a good one, so time will tell what it is (and it took time between each doctor's visit as I was hoping my own treatments and theirs would get rid of it). You are right my chest does hurt but the throat is now very....moist. Its just with this and beb/meige I don't want to go anywhere and have missed out on so many social events. Oh well, what can a body do? I have this bb at least, for which I am truly thankful, and I do count ALL my other blessings.June in Toronto
Re: sick and tired of being sick and tired
Hi June,I second every single word of your first paragraph. We do have a lot to be thankful for compared to the suffering of people in other countries who are left with little hope.
I hope and pray that you and Catherine are going to feel better soon and that this sick-and-tired feeling becomes a thing of the past quickly. I have hiatus hernia for a few years now. One can control h.h. quite well as you will soon know. It's a pain having to cope with other health related conditions when Meige's is already such a problem for us.
Since I'm unable to eat normally due to oromandibular dystonia, which makes chewing food an agonizing task due to interfering spasms, I was diagnosed with esophageal spasms. Anyone who's ever suffered from this condition or heard of it knows that the pain of it is unimaginable. My doctor calls it the most brutal pain he knows of. Only morphine I.V.s were of any help while in hospital. I am sure, without Meige's I would have been spared the condition. Can't blame that poor esophagus of mine for rebelling when half-chewed food has to pass through it forever.
Rosacea, also a nervous disorder, is another condition I am "blessed" with - go figure... I can hear my mother tell me, "Keep your head up, girl, it could be worse." So there you are. Please keep your's up as well, okay. Hugs and best wishes. Keep smiling,
Gisela --modified by Gisela at Fri, Apr 05, 2002, 01:03:19
Re: sick and tired of being sick and tired/Gisela
Thanks for your kind words Gisela. I don't know that this reflux `thing' is hh or not - the x-ray will tell all I guess. Glad to hear that your hh is controllable but what you went through sounded awful. You have had, and are continuing to have more than your share of troubles with Rosacea (I had that year's ago, not nice!) and your Meige sounds worse than mine. I'm trying to really chew my food and eat much more slowly than I want to, in order to help this reflux problem. I'd like to take some stress classes again ( haven't for years) as, although I know about deep breathing (when I'm feeling ok I go to yoga classes), listening to music, etc, etc, I'd like to do it under guidance. I haven't been able to come up with anything yet though - I took it through a local hospital many moons ago, and the Parks and Recreation Dept. doesn't seem to offer it, so I'll have to keep checking.
Listen to YOUR MOTHER "keep your chin up girl, it could be worse" and I will too! Hugs June in Toronto (beb/meige)
Re: sick and tired of being sick and tired
I am interested in a description of esophogeal spasms, Gisela. My mother in the last few years of her life had difficulty sometimes swallowing. Well not in the swallowing part as such,although she did have difficulty chewing too. But it was once the food had passed the gullet and was in her eosophagus that she seemed to choke. The food quite simply would not go down she said. Nobody knew what it was, and they thought in the hospital that she was doing it for attention! And she found it difficult to explain.
Is this similar to your experience?
Pippa, in brilliant sunshine again today in Scotland.
Re: sick and tired of being sick and tired
I have trouble swallowing too but not as bad as your mom. I've heard other people mention it--maybe on the dystonia board. Ann Doyle
Re: sick and tired of being sick and tired
Problems with swallowing can be one of the symptoms of oromandibular dystonia.Gisela
Re: sick and tired of being sick and tired
I am interested in a description of esophogeal spasms, Gisela. My mother in the last few years of her life had difficulty sometimes swallowing. Well not in the swallowing part as such,although she did have difficulty chewing too. But it was once the food had passed the gullet and was in her eosophagus that she seemed to choke. The food quite simply would not go down she said. Nobody knew what it was, and they thought in the hospital that she was doing it for attention! And she found it difficult to explain.
Is this similar to your experience?
Pippa, in brilliant sunshine again today in Scotland.
Re: sick and tired of being sick and tired
Hi, Pippa,Did your mother have any tests done and if so, what did the results show? The cause of esophageal spasm is unknown. Very hot or very cold foods may trigger an episode. The pain is extremely severe and may be indistinguishable from angina, the very reason why my gastroenterologist had my heart checked first. Symptoms are difficulty or pain with swallowing, heartburn and pain in the chest or upper abdomen.
Medications are generally ineffective; Nitroglycerin, Anxiolytics and calcium channel blockers were of no help. I had x-rays and an endoscopy (which is a visual exam of the esophagus using a flexible tube) done, which showed scarring due to inflammation. They then did a dilatation of the esophagus since mine had shrunk, showing scarring. I have to take Losec on a daily basis for the rest of my life and know that this medication is God's gift for me since there wasn't another attack. Finally, I am sure that hiatus hernia was the culprit of my e.s., and I'm as certain that it was my inability to chew food properly (so important for everyone), due to oromandibular dystonia, that caused the hiatus hernia in the first place. Hope this helps. You may also want to check the internet; there's a lot of info on this condition available there. Gisela
Re: sick and tired of being sick and tired/Catherine
Catherine, it's just plain exhausting when a major part of your body doesn't work. It is also emotionally exhausting and frustrating . It IS good to vent on this bb. Sally and I were discussing how cathartic writing can be. June I certainly hope you get better!
Re: sick and tired of being sick and tired/Kathy
Thanks, Kathy, I do too! June in Toronto
Re: sick and tired of being sick and tired/Kathy
Hi June, Now that it's Spring, we all just HAVE to get better:) I told the pastor's wife today that I'm tired of never feeling well anymore. So tired and weak. At least I have my walker back, and I've gone for walks every day that I've had it. (Gerry's mom was using it) Too bad it's supposed to rain tomorrow. That will put a kink in the walking:) Maybe it's time for you to try antibiotics again. It may have been just a virus at first, but has turned into infections?
Get well soon.
Hugs, Evelyn
Re: sick and tired of being sick and tired/Evelyn
The doctor said antibiotics won't help this, Evelyn - I'm to have an x-ray next week and am on a medication meanwhile for the reflux problem and cortison spray for the sinus'. You said its SPRING - well can you tell Toronto that please as its snowing here:-) Glad you are able to walk some - getting out and hearing the birds is a definite plus. I really enjoyed your lasagna, my son got donated some and we have left-overs for the weekend as it makes such a large pan full - thanks.
Hugs to you - June in Toronto (beb/meige)
Re: sick and tired / Catherine
Catherine, a belated Happy Anniversary ! You got married on my birthday, are you sure you are really married and it wasn't just an April fool's joke? Just kidding. :-)Sorry to hear about your depression, but I can identify, since I'm almost chronically depressed. For the depressed to console the depressed is a bit like the blind leading the blind. I think it's quite normal to go through the grieving process occasionally, at least for some of us, there may be others who have conquered the acceptance phase completely. We are all different in our various backgrounds, personality and psychological make-up. We feel guilty, knowing we have so much to be grateful for and there are others worse off or suffering more serious conditions, so therefore we should be happy. Doesn't work that way though, does it? It's difficult to enjoy what one has, when in addition to this disorder one has other physical complaints and isn't feeling well.
Enjoy the trip to Mexico, the change of scenery might be the stress relief you need and I hope you feel better real soon. Christel in Ca. who is also sick and tired of being sick and tired
Re: April 1st
Your birthday, Christel, Catherine's wedding anniversary and April 1, 1960, I left Liverpool, England to come to Canada - I was 20 year's young! I remember my mother reminding me that it was April Fool'sDay - I realise now that, as her baby, she was just so upset about my leaving home. Oh if only we knew then what we know now! But Canada is my home and was within 6 months of being here, but being a mother myself, I now realize what I put her through. Oh the memories.June in Toronto who hopes we ALL get over being sick and tired of being sick and tired very soon!
Re: April 1st/June
That was also the day the "Skaubryn" sank in the Red Sea. 6 years earlier that ship had taken me to Australia, no luxury, but oh the fun I had.Christel in Ca. feeling sentimental
Re: April 1st/June
Thanks to everyone for their kind words of encouragement. I just got off the phone with a friend who said well I thought that 2 years after the operations you should be cured by now. Why did you go throught all that!. Again had to explain that it is not a cure but I am better. She never new me in my previous life.My thyroid test came back ok so the doctor wants me to check in with her when I get back. Maybe my meds need adjusting. I just take Lorazapam at night and sometimes 1/2 during the day. It seems like I am taking them more during the day for anxiety. Hopefully there is something else I can take as I have been on lorazapam for quite a while.
She is very willing to let me try different things as she doesn't know that much about the condition. This is my GP.
I would appreciate names of meds any of you have tried for anxiety.
We leave for Mexico at 5:30 am Friday so I will not be posting for 10 days. Will be having a magaritta for all of you.
OOOOps just one or two Catherine in Calgary where we got more snow today.
Re: MARGARITTA's IN MEXICO
That sounds wonderful, Catherine. - r el a x and e n j o y , you deserve it.June in Toronto where its snowing again
Re: April 1st/Christel
I came over to Canada on the ship the Empress of France - it was her last voyage. She slightly hit an iceburg (no damage) and half the crew were down with sea sickness - me too. It was to be my last `party' before I arrived to get married to my English fiance. I travelled with a girl friend who was joining friends to work their way across the country (she now lives in Australia). Some party that was, I was given injections and could only try to eat was brown bread and apple juice - and now I dislike apple juice even after 42 years! The only place I could tolerate was to be on top deck, standing in the middle where I couldn't feel the sway - I walked with `sea legs' for 2 weeks afterwards.I'm glad you had fun on your trip to Australia on the Skaubryn - awful that it sank 6 years later. June in Toronto who remembers standing on the top deck of the ship watching the amazing....Quebec scenery as we came down the St.Lawrence River, with light snow falling and the church steeples covered in white and the bells ringing....oh those are good memories!
Re: sick and tired of being sick and tired
Hello everyone,
This is my second posting since I found this site and after reading many, many of the posting, I don't feel so all alone.I hope to be visiting often so I think I should introduce myself.
My name is Debbie Campbell and I am from London, Ontario. I am 43 yrs old and a single parent. My daughter who is 13 will be gradutating from elementry school this June. I work for a outdoor/ski wear company as a planning/buying manager and been with the company for 15+year.
I was diagnosed with beb in January after a series of Dr and eye specialist appointments which bring me to where I am tonight.
I look forward to chatting with everyone!
Debbie
Re: Debbie
Glad to see you have been posting away, Debbie - I welcomed you under another post. We look forward to chatting with you. CheersJune in Toronto (beb/meige)
Message to Debbie Campbell
Hi DebbieI have been away on and off for several weeks and just noticed your posting. I Live in Calgary now but I am from London, Ontario. I get back to visit family a couple of times a year. If you are interested in chatting E-Mail me at patandchat@shaw.ca. Maybe we can meet sometime
Catherine
Re: Message to Debbie Campbell
Hi Cathrine,
Nice to meet you. Thanks for the offer of a chat. I will take you up on that! I will email you soon. How long have you lived in Calgary? I have never been to the west, unless you count a stopover flight in Vancouver on the way to Portland Oregon. I do hear it is beautiful.
I am just getting ready to go out right now but my eyes are 'acting up' again and I am debating on whether or not I can drive!
Talk to you soon and thanks for getting in touch.
Debbie
Re: Message to Debbie Campbell
Me again,
I fotgot to give you my email address as well. It is cmpdeb@netscape.net.
I look forward to talking to you.
Debbie
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