Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 I wanted to add that the rebound pain from migrains that I know about is from my friend, not personal experience. I'm not sure even what it would be. If it is the same pain that you started with or different feeling pain. AlyceAnn > > Hi > I have been a member of this list for quite awhile. I have had fibromyalgia and CHF since the end of 1999. I was a poster (mainly lurker ) when I first joined not only to learn how to cope but to help figure out how to get SS disability. > > I finally did get disability Jan 2002 after applying again after being denied an appeal in 2001 (long story, my lawyer dumped me when I was denied, I had to appeal by myself. I opened up my new case myself and got disability without the " help " of a worthless lawyer). I did not get disability for fibromyalgia, I got it because I was " lucky " enough to have sever COPD along with Fibromyalgia, degenerating spine & arthritis. I got it with COPD as my qualifying diagnosis. When I finally got the disability I was so disgusted with Fibromyalgia that I went no mail and stopped seeing all the worthless doctors that just told me to take walks to alleviate the pain. I dealt with it to ignore it and my family doctor gave me Piroxicam and tylenol with codein. Well I said all that to say this: I have been taking the tylenol with codein since about March of this year. I have the RX to take 2 tablets every 6 hrs but do not take that much. I usually take about 6 pills a day sometimes just 4. They only seem to take the edge off and sometimes I wonder about that. My question is this (lol about time huh?) I know about rebound pain from being addicted to pain meds with migrains. Is this possible with Fibro? I am afraid to ask my doctor because even if these don't work good they are all I have. I talked him into giving me these because I am 4' 11 " and was up to 201lbs. I told him I would walk again (I loved walking miles a day) if I could have the pain meds to do it. I have been walking between 1 mile to 4 miles a day as I am able. My pain right now is almost impossible to stand even with them. I could just be in a LONG flair or I am wondering if it is rebound pain and I should try to just not take them and see. Have I been clear at all? Can someone answer these questions? TIA. > > > =^..^= ^,,^ AlyceAnn ^,,^ =^..^= > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 AlyceAnn, I have been thinking the same thing about my meds, but I think it is the fibro because I was hurting before I got these meds, the more I do the more I hurt, if I was walking like you do every day I wouldn't be able to do anything else. Today I am hurting worse than I have been in awhile my lower back and legs are giving me a fit.I take zanaflex before I go to bed and I sleep a few hours then I get up and set for a hour or so then go back to bed for a couple of more hours, then when I do get up I try to clean what has to be cleaned today, which is the kitchen.I don't know what I would do without the pain meds they are the only thing that keeps me going, I don't know what I would do if they take me off my meds I can't stand this pain. Audie Hello Again! Hi I have been a member of this list for quite awhile. I have had fibromyalgia and CHF since the end of 1999. I was a poster (mainly lurker ) when I first joined not only to learn how to cope but to help figure out how to get SS disability. I finally did get disability Jan 2002 after applying again after being denied an appeal in 2001 (long story, my lawyer dumped me when I was denied, I had to appeal by myself. I opened up my new case myself and got disability without the " help " of a worthless lawyer). I did not get disability for fibromyalgia, I got it because I was " lucky " enough to have sever COPD along with Fibromyalgia, degenerating spine & arthritis. I got it with COPD as my qualifying diagnosis. When I finally got the disability I was so disgusted with Fibromyalgia that I went no mail and stopped seeing all the worthless doctors that just told me to take walks to alleviate the pain. I dealt with it to ignore it and my family doctor gave me Piroxicam and tylenol with codein. Well I said all that to say this: I have been taking the tylenol with codein since about March of this year. I have the RX to take 2 tablets every 6 hrs but do not take that much. I usually take about 6 pills a day sometimes just 4. They only seem to take the edge off and sometimes I wonder about that. My question is this (lol about time huh?) I know about rebound pain from being addicted to pain meds with migrains. Is this possible with Fibro? I am afraid to ask my doctor because even if these don't work good they are all I have. I talked him into giving me these because I am 4' 11 " and was up to 201lbs. I told him I would walk again (I loved walking miles a day) if I could have the pain meds to do it. I have been walking between 1 mile to 4 miles a day as I am able. My pain right now is almost impossible to stand even with them. I could just be in a LONG flair or I am wondering if it is rebound pain and I should try to just not take them and see. Have I been clear at all? Can someone answer these questions? TIA. =^..^= ^,,^ AlyceAnn ^,,^ =^..^= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 AlyceAnn, I have been thinking the same thing about my meds, but I think it is the fibro because I was hurting before I got these meds, the more I do the more I hurt, if I was walking like you do every day I wouldn't be able to do anything else. Today I am hurting worse than I have been in awhile my lower back and legs are giving me a fit.I take zanaflex before I go to bed and I sleep a few hours then I get up and set for a hour or so then go back to bed for a couple of more hours, then when I do get up I try to clean what has to be cleaned today, which is the kitchen.I don't know what I would do without the pain meds they are the only thing that keeps me going, I don't know what I would do if they take me off my meds I can't stand this pain. Audie Hello Again! Hi I have been a member of this list for quite awhile. I have had fibromyalgia and CHF since the end of 1999. I was a poster (mainly lurker ) when I first joined not only to learn how to cope but to help figure out how to get SS disability. I finally did get disability Jan 2002 after applying again after being denied an appeal in 2001 (long story, my lawyer dumped me when I was denied, I had to appeal by myself. I opened up my new case myself and got disability without the " help " of a worthless lawyer). I did not get disability for fibromyalgia, I got it because I was " lucky " enough to have sever COPD along with Fibromyalgia, degenerating spine & arthritis. I got it with COPD as my qualifying diagnosis. When I finally got the disability I was so disgusted with Fibromyalgia that I went no mail and stopped seeing all the worthless doctors that just told me to take walks to alleviate the pain. I dealt with it to ignore it and my family doctor gave me Piroxicam and tylenol with codein. Well I said all that to say this: I have been taking the tylenol with codein since about March of this year. I have the RX to take 2 tablets every 6 hrs but do not take that much. I usually take about 6 pills a day sometimes just 4. They only seem to take the edge off and sometimes I wonder about that. My question is this (lol about time huh?) I know about rebound pain from being addicted to pain meds with migrains. Is this possible with Fibro? I am afraid to ask my doctor because even if these don't work good they are all I have. I talked him into giving me these because I am 4' 11 " and was up to 201lbs. I told him I would walk again (I loved walking miles a day) if I could have the pain meds to do it. I have been walking between 1 mile to 4 miles a day as I am able. My pain right now is almost impossible to stand even with them. I could just be in a LONG flair or I am wondering if it is rebound pain and I should try to just not take them and see. Have I been clear at all? Can someone answer these questions? TIA. =^..^= ^,,^ AlyceAnn ^,,^ =^..^= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Wow Audie! I know exactly what you are saying! (BTW thanks for answering my post, I wasn't sure it even got through, no one posted about it). I am totally afraid of what I would do if they stopped my meds too. =^..^= ^,,^ AlyceAnn ^,,^ =^..^= Re: Hello Again! AlyceAnn, I have been thinking the same thing about my meds, but I think it is the fibro because I was hurting before I got these meds, the more I do the more I hurt, if I was walking like you do every day I wouldn't be able to do anything else. Today I am hurting worse than I have been in awhile my lower back and legs are giving me a fit.I take zanaflex before I go to bed and I sleep a few hours then I get up and set for a hour or so then go back to bed for a couple of more hours, then when I do get up I try to clean what has to be cleaned today, which is the kitchen.I don't know what I would do without the pain meds they are the only thing that keeps me going, I don't know what I would do if they take me off my meds I can't stand this pain. Audie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Wow Audie! I know exactly what you are saying! (BTW thanks for answering my post, I wasn't sure it even got through, no one posted about it). I am totally afraid of what I would do if they stopped my meds too. =^..^= ^,,^ AlyceAnn ^,,^ =^..^= Re: Hello Again! AlyceAnn, I have been thinking the same thing about my meds, but I think it is the fibro because I was hurting before I got these meds, the more I do the more I hurt, if I was walking like you do every day I wouldn't be able to do anything else. Today I am hurting worse than I have been in awhile my lower back and legs are giving me a fit.I take zanaflex before I go to bed and I sleep a few hours then I get up and set for a hour or so then go back to bed for a couple of more hours, then when I do get up I try to clean what has to be cleaned today, which is the kitchen.I don't know what I would do without the pain meds they are the only thing that keeps me going, I don't know what I would do if they take me off my meds I can't stand this pain. Audie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 Hi all, Sorry I haven't been around, I had a problem with my lap-top, ended up calling it HAL out of 2001 a space odessy (I don't think you want to do that Dave) I ended up karate chopping it and killing it outright I've also been battling depression. Never had to do that before, it's funny how it gets you isn't it. Tick along dealing with the big things, you think you're doing ok. Burn the onions and it's the end of the world. I realised I needed help when I couldn't deal with the washing up water being too hot! I didn't have the facility to think 'oh the waters too hot, add some cold' but ended up in a quivering heap on the bed instead. Over here getting a counsellor to talk to is quite a long winded process and there is a waiting list of several months unless you are on the brink of suicide, (which through out all this time I have never contemplated). My chest physician, however, was fantastic, and started to book me in as the last patient of the day, so that I had all the time I needed to talk. Part of the problems that I'd been having was that the last time I'd seen my tx consultant he didn't give me anything positive to hold on to. He gave me all the downsides of not having a tx and all the downsides of having one, which really left me thinking 'what's the bloody point?'. I also think it was a kick back from the stress of moving. You know, you hold things together while you have to, but once a bit of stress is released you unravel like a tightly coiled spring. Interestingly my chest physician wasn't surprised that I'd unravelled, but was surprised that I hadn't unravelled sooner! Evidently she knows me better than I do I realise I am very lucky with my chest physician, and I'm so grateful that she is my doc. I'm still quite fragile emotionally, but at least I can go for days without having an episode now, rather than hours! I have some coping strategies and am able to see an episode coming and can usually get myself out of the situation before it becomes a trauma. It was partly this fragile emotional state that's kept me away. Just not able to deal with things and sticking that big ostrich like head of mine firmly in the sand. I'm booked to go in for my tx evaluation on 20th April. I was supposed to have gone the other week, but that got cancelled due to an emergency on the ward and I was left without a bed. Rob and I had already left and got the call to say it wasn't happening at the worst possible point on the journey, stuck in a huge traffic jam and unable to turn round for about 3 miles! Other than that, my pft's are stablish, I did have a nasty chest infection at the beginning of the year which has caused a bit more damage, which is annoying, and I had to raise the pred up again and go on some heavy duty anti-bi's to clear it, but am off them again now, and, touch wood, haven't had a major infection since then. Not bad since it's hayfever season and that usually ends up getting on my chest! Hope you are all well Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 Zena, I've been to Depression and I know how painful it is!!! Take care of you!!!Give yourself time to heal emotionally and just rest. Don't be hard on yourself..Thank G-d that your Chest doc is a listening kind of person!!! Many of us have experienced all sorts of emotional messes..and again ...we get it! It's just not PF that joins us but everything else that comes along for the entire ride. Have a peaceful and tasty Easter and feel better. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Zena wrote: Hi all, Sorry I haven't been around, I had a problem with my lap-top, ended up calling it HAL out of 2001 a space odessy (I don't think you want to do that Dave) I ended up karate chopping it and killing it outright I've also been battling depression. Never had to do that before, it's funny how it gets you isn't it. Tick along dealing with the big things, you think you're doing ok. Burn the onions and it's the end of the world. I realised I needed help when I couldn't deal with the washing up water being too hot! I didn't have the facility to think 'oh the waters too hot, add some cold' but ended up in a quivering heap on the bed instead. Over here getting a counsellor to talk to is quite a long winded process and there is a waiting list of several months unless you are on the brink of suicide, (which through out all this time I have never contemplated). My chest physician, however, was fantastic, and started to book me in as the last patient of the day, so that I had all the time I needed to talk. Part of the problems that I'd been having was that the last time I'd seen my tx consultant he didn't give me anything positive to hold on to. He gave me all the downsides of not having a tx and all the downsides of having one, which really left me thinking 'what's the bloody point?'. I also think it was a kick back from the stress of moving. You know, you hold things together while you have to, but once a bit of stress is released you unravel like a tightly coiled spring. Interestingly my chest physician wasn't surprised that I'd unravelled, but was surprised that I hadn't unravelled sooner! Evidently she knows me better than I do I realise I am very lucky with my chest physician, and I'm so grateful that she is my doc. I'm still quite fragile emotionally, but at least I can go for days without having an episode now, rather than hours! I have some coping strategies and am able to see an episode coming and can usually get myself out of the situation before it becomes a trauma. It was partly this fragile emotional state that's kept me away. Just not able to deal with things and sticking that big ostrich like head of mine firmly in the sand. I'm booked to go in for my tx evaluation on 20th April. I was supposed to have gone the other week, but that got cancelled due to an emergency on the ward and I was left without a bed. Rob and I had already left and got the call to say it wasn't happening at the worst possible point on the journey, stuck in a huge traffic jam and unable to turn round for about 3 miles! Other than that, my pft's are stablish, I did have a nasty chest infection at the beginning of the year which has caused a bit more damage, which is annoying, and I had to raise the pred up again and go on some heavy duty anti-bi's to clear it, but am off them again now, and, touch wood, haven't had a major infection since then. Not bad since it's hayfever season and that usually ends up getting on my chest! Hope you are all well Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 Zena I'm with your chest physician in the surprise. I'm amazed at anyone here who hasn't suffered from depression and/or anxiety. I can't imagine getting through this without a counselor. I'll preach it long and hard as something that should basically come with the diagnosis of any serious disease. If you don't experience the hit at first, it will get to you sometime along the way. Anyone who thinks they are going to go from diagnosis through the rest of their lives without going through depression and all the emotions of sadness and anger is likely to be fooling themselves. Those are natural. It's not going into a depressive state that is the problem. It's getting through it and coming out of it that's the key, not letting it keep us there as it's prisoner. I'm fortunate that I already had the world's greatest counselor who had brought me out of the most severe long before PF. But, I wouldn't think of traveling this road without her. As to the negatives, sometimes in their requirements for honesty doctors to seem to have to go a bit far. Talk to all those who have had transplants and are joyous that they did. Then deal with the choices personally but from your own feelings. It's good to know the challenges facing a transplant recipient and fully understand them, but don't lose sight of the memories one gets to make after. Ask those who have experienced a child's birthday they thought they'd miss or seen their daughter get married. Just don't let a medical dissertation sway your thoughts unduly. Some of us aren't good candidates for transplants for a myriad of reasons. Transplants are certainly not a walk in the park. We had a member recently not survive one. But I've also some who had the worst struggles after but still have never regretted having it for a moment. > > > Hi all, > > Sorry I haven't been around, I had a problem with my lap-top, ended up > calling it HAL out of 2001 a space odessy (I don't think you want to do > that Dave) I ended up karate chopping it and killing it outright [[-(] > > I've also been battling depression. Never had to do that before, it's > funny how it gets you isn't it. Tick along dealing with the big > things, you think you're doing ok. Burn the onions and it's the end of > the world. I realised I needed help when I couldn't deal with the > washing up water being too hot! I didn't have the facility to think 'oh > the waters too hot, add some cold' but ended up in a quivering heap on > the bed instead. Over here getting a counsellor to talk to is quite a > long winded process and there is a waiting list of several months unless > you are on the brink of suicide, (which through out all this time I have > never contemplated). My chest physician, however, was fantastic, and > started to book me in as the last patient of the day, so that I had all > the time I needed to talk. Part of the problems that I'd been having > was that the last time I'd seen my tx consultant he didn't give me > anything positive to hold on to. He gave me all the downsides of not > having a tx and all the downsides of having one, which really left me > thinking 'what's the bloody point?'. > > I also think it was a kick back from the stress of moving. You know, > you hold things together while you have to, but once a bit of stress is > released you unravel like a tightly coiled spring. Interestingly my > chest physician wasn't surprised that I'd unravelled, but was surprised > that I hadn't unravelled sooner! Evidently she knows me better than I > do [] > > I realise I am very lucky with my chest physician, and I'm so grateful > that she is my doc. I'm still quite fragile emotionally, but at least I > can go for days without having an episode now, rather than hours! I > have some coping strategies and am able to see an episode coming and can > usually get myself out of the situation before it becomes a trauma. > > It was partly this fragile emotional state that's kept me away. Just > not able to deal with things and sticking that big ostrich like head of > mine firmly in the sand. > > I'm booked to go in for my tx evaluation on 20th April. I was supposed > to have gone the other week, but that got cancelled due to an emergency > on the ward and I was left without a bed. Rob and I had already left > and got the call to say it wasn't happening at the worst possible point > on the journey, stuck in a huge traffic jam and unable to turn round for > about 3 miles! > > Other than that, my pft's are stablish, I did have a nasty chest > infection at the beginning of the year which has caused a bit more > damage, which is annoying, and I had to raise the pred up again and go > on some heavy duty anti-bi's to clear it, but am off them again now, > and, touch wood, haven't had a major infection since then. Not bad > since it's hayfever season and that usually ends up getting on my chest! > > Hope you are all well > > Love Ze xx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Hi Jane and everyone, thanks for your replies. The main strategies that I've been given is to get out. Once I notice the danger signs, get out on my own (or with the dog) for a little while. If getting out isn't possible, then lock myself away in the bedroom or bathroom and do some deep slow breathing. I sat Rob down and talked to him about what I was going through, and when I'm having a rough patch I simply can't deal with more than one thing at a time. He needed to be more aware of this so that he can be helpful in, say, entertaining Lili so that I can concentrate on the one thing that I'm doing. Taking the dog out = no demands on me. I've had to learn to give myself permission to 'feel' too. I've paid lipservice to this before, many times, but apparently I wasn't taking my own advice. But if I'm feeling angry, be angry, if I'm feeling sad, be sad. The trouble with this is that I don't really want my daughter to see mummy being sad or angry. As she's 6 she tends to take on the responsibility of it being her fault, so I hold it together. Which is fine for a short time, but now I warn Rob before he comes home from work so that I can have some release of my feelings. It's not that I think she shouldn't see my emotions, but that she's too young to understand that it's not her fault. (one realise that REALLY worked was when I went round to the communal bin area and smashed what was left of my crockery straight into the bin. Got some funny looks, but, hey, I felt better) I seem to have mental energy that needs to be 'run off' but don't have the physical capabilities of doing it. I'd been getting very frustrated at my physicial capabilities and losing my independance. I felt that I was letting Lili down not being able to take her out for long and generally not being able to just 'do'. We're working on that. The other day I had a lovely walk in the woods as the woods are near me, but up a steep hill to get to them. Rob drove me and the dog to one end of the woods, he then drove back and he and Lili had the adventure of having to find me. So I had some quiet time and Lili had some quality family time all at the same time. I find it very frustrating to be told how strong my body is when we're not talking about anything lung related. All my other organ functions are excellant. This is something to be happy about, I know, especially as I'm hoping for a tx. But it's so bloody annoying to know that if my lungs worked, just how fit I'd be right now! So after that ramble, I suppose the coping mechanisms are being aware of when things are getting to me and get out of the situation. Get Rob on board to be aware that I need help NOW, not when he's ready, or finished what he's doing, but NOW. Remember not to take on too much at one time. Remember that I can't multitask at the moment. Keep talking. Keep breathing. It's funny how you don't realise how much your on line communities mean either. I was at my worst when I didn't have access to the internet, but didn't put the two together. Now I'm closely involved with 3 communities and can waffle away whatever I'm feeling, and that helps, it really does. A case of not knowing what you've got til it's gone I think. Love Ze xx > >> >> > Hi all,> >> > Sorry I haven't been around, I had a problem with my lap-top, ended up> > calling it HAL out of 2001 a space odessy (I don't think you want to> do> > that Dave) I ended up karate chopping it and killing it outright [[-(]> >> > I've also been battling depression. Never had to do that before, it's> > funny how it gets you isn't it. Tick along dealing with the big> > things, you think you're doing ok. Burn the onions and it's the end of> > the world. I realised I needed help when I couldn't deal with the> > washing up water being too hot! I didn't have the facility to think> 'oh> > the waters too hot, add some cold' but ended up in a quivering heap on> > the bed instead. Over here getting a counsellor to talk to is quite a> > long winded process and there is a waiting list of several months> unless> > you are on the brink of suicide, (which through out all this time I> have> > never contemplated). My chest physician, however, was fantastic, and> > started to book me in as the last patient of the day, so that I had> all> > the time I needed to talk. Part of the problems that I'd been having> > was that the last time I'd seen my tx consultant he didn't give me> > anything positive to hold on to. He gave me all the downsides of not> > having a tx and all the downsides of having one, which really left me> > thinking 'what's the bloody point?'.> >> > I also think it was a kick back from the stress of moving. You know,> > you hold things together while you have to, but once a bit of stress> is> > released you unravel like a tightly coiled spring. Interestingly my> > chest physician wasn't surprised that I'd unravelled, but was> surprised> > that I hadn't unravelled sooner! Evidently she knows me better than I> > do []> >> > I realise I am very lucky with my chest physician, and I'm so grateful> > that she is my doc. I'm still quite fragile emotionally, but at least> I> > can go for days without having an episode now, rather than hours! I> > have some coping strategies and am able to see an episode coming and> can> > usually get myself out of the situation before it becomes a trauma.> >> > It was partly this fragile emotional state that's kept me away. Just> > not able to deal with things and sticking that big ostrich like head> of> > mine firmly in the sand.> >> > I'm booked to go in for my tx evaluation on 20th April. I was supposed> > to have gone the other week, but that got cancelled due to an> emergency> > on the ward and I was left without a bed. Rob and I had already left> > and got the call to say it wasn't happening at the worst possible> point> > on the journey, stuck in a huge traffic jam and unable to turn round> for> > about 3 miles!> >> > Other than that, my pft's are stablish, I did have a nasty chest> > infection at the beginning of the year which has caused a bit more> > damage, which is annoying, and I had to raise the pred up again and go> > on some heavy duty anti-bi's to clear it, but am off them again now,> > and, touch wood, haven't had a major infection since then. Not bad> > since it's hayfever season and that usually ends up getting on my> chest!> >> > Hope you are all well> >> > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Zena Many of the coping mechanisms are those I had to learn before PF too. For instance, when depressed, my inclination would be to stay home away from everything and ruminate all day. So, part of my homework included getting out of the house every day. At first I hated it sometimes. But, I also couldn't flunk my homework...lol. So, I'd to it. Well, thats come in so handy and since PF it's just been natural to me. I've had days that it was nothing more than a run to the convenience store. But, I'd venture to say that in the past year, I've had no more than 5 or 6 days I didn't leave the house and those were either after very long days or during very bad weather. You sounded so happy talking about the park. More than one counselor has emphasized " planned pleasant activities. " I had the period when I couldn't think of anything that would be fun. But it might be a tv show, chatting online, driving to the park and just watching the ducks or the people, talking to a friend on the phone. It actually took me a lot of work to figure them out. As we become less mobile we do have less contact with others if we're not careful. Working, I was guaranteed to see a large group of co-workers every day. Now, I could avoid seeing anyone all day if not careful. Well, that's one I've had to work hard to make sure I was around people. But, its also where technology really does come in. I have unlimited long distance, so can always talk to anyone anytime. But more for me, I know how being without internet as you were would hit me. I couldn't do it. I'd be driving to Fedex/Kinko to get on or something. I know that I can come to this forum every day and communicate with friends. I can email others. I can go elsewhere and chat with other friends. I can go play cards if I desire or other games. I also know that as my mobility lessens, this is going to be more and more critical. > > > > > > > > > Hi all, > > > > > > Sorry I haven't been around, I had a problem with my lap-top, ended > up > > > calling it HAL out of 2001 a space odessy (I don't think you want to > > do > > > that Dave) I ended up karate chopping it and killing it outright > [[-(] > > > > > > I've also been battling depression. Never had to do that before, > it's > > > funny how it gets you isn't it. Tick along dealing with the big > > > things, you think you're doing ok. Burn the onions and it's the end > of > > > the world. I realised I needed help when I couldn't deal with the > > > washing up water being too hot! I didn't have the facility to think > > 'oh > > > the waters too hot, add some cold' but ended up in a quivering heap > on > > > the bed instead. Over here getting a counsellor to talk to is quite > a > > > long winded process and there is a waiting list of several months > > unless > > > you are on the brink of suicide, (which through out all this time I > > have > > > never contemplated). My chest physician, however, was fantastic, and > > > started to book me in as the last patient of the day, so that I had > > all > > > the time I needed to talk. Part of the problems that I'd been having > > > was that the last time I'd seen my tx consultant he didn't give me > > > anything positive to hold on to. He gave me all the downsides of not > > > having a tx and all the downsides of having one, which really left > me > > > thinking 'what's the bloody point?'. > > > > > > I also think it was a kick back from the stress of moving. You know, > > > you hold things together while you have to, but once a bit of stress > > is > > > released you unravel like a tightly coiled spring. Interestingly my > > > chest physician wasn't surprised that I'd unravelled, but was > > surprised > > > that I hadn't unravelled sooner! Evidently she knows me better than > I > > > do [] > > > > > > I realise I am very lucky with my chest physician, and I'm so > grateful > > > that she is my doc. I'm still quite fragile emotionally, but at > least > > I > > > can go for days without having an episode now, rather than hours! I > > > have some coping strategies and am able to see an episode coming and > > can > > > usually get myself out of the situation before it becomes a trauma. > > > > > > It was partly this fragile emotional state that's kept me away. Just > > > not able to deal with things and sticking that big ostrich like head > > of > > > mine firmly in the sand. > > > > > > I'm booked to go in for my tx evaluation on 20th April. I was > supposed > > > to have gone the other week, but that got cancelled due to an > > emergency > > > on the ward and I was left without a bed. Rob and I had already left > > > and got the call to say it wasn't happening at the worst possible > > point > > > on the journey, stuck in a huge traffic jam and unable to turn round > > for > > > about 3 miles! > > > > > > Other than that, my pft's are stablish, I did have a nasty chest > > > infection at the beginning of the year which has caused a bit more > > > damage, which is annoying, and I had to raise the pred up again and > go > > > on some heavy duty anti-bi's to clear it, but am off them again now, > > > and, touch wood, haven't had a major infection since then. Not bad > > > since it's hayfever season and that usually ends up getting on my > > chest! > > > > > > Hope you are all well > > > > > > Love Ze xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Zena Many of the coping mechanisms are those I had to learn before PF too. For instance, when depressed, my inclination would be to stay home away from everything and ruminate all day. So, part of my homework included getting out of the house every day. At first I hated it sometimes. But, I also couldn't flunk my homework...lol. So, I'd to it. Well, thats come in so handy and since PF it's just been natural to me. I've had days that it was nothing more than a run to the convenience store. But, I'd venture to say that in the past year, I've had no more than 5 or 6 days I didn't leave the house and those were either after very long days or during very bad weather. You sounded so happy talking about the park. More than one counselor has emphasized " planned pleasant activities. " I had the period when I couldn't think of anything that would be fun. But it might be a tv show, chatting online, driving to the park and just watching the ducks or the people, talking to a friend on the phone. It actually took me a lot of work to figure them out. As we become less mobile we do have less contact with others if we're not careful. Working, I was guaranteed to see a large group of co-workers every day. Now, I could avoid seeing anyone all day if not careful. Well, that's one I've had to work hard to make sure I was around people. But, its also where technology really does come in. I have unlimited long distance, so can always talk to anyone anytime. But more for me, I know how being without internet as you were would hit me. I couldn't do it. I'd be driving to Fedex/Kinko to get on or something. I know that I can come to this forum every day and communicate with friends. I can email others. I can go elsewhere and chat with other friends. I can go play cards if I desire or other games. I also know that as my mobility lessens, this is going to be more and more critical. > > > > > > > > > Hi all, > > > > > > Sorry I haven't been around, I had a problem with my lap-top, ended > up > > > calling it HAL out of 2001 a space odessy (I don't think you want to > > do > > > that Dave) I ended up karate chopping it and killing it outright > [[-(] > > > > > > I've also been battling depression. Never had to do that before, > it's > > > funny how it gets you isn't it. Tick along dealing with the big > > > things, you think you're doing ok. Burn the onions and it's the end > of > > > the world. I realised I needed help when I couldn't deal with the > > > washing up water being too hot! I didn't have the facility to think > > 'oh > > > the waters too hot, add some cold' but ended up in a quivering heap > on > > > the bed instead. Over here getting a counsellor to talk to is quite > a > > > long winded process and there is a waiting list of several months > > unless > > > you are on the brink of suicide, (which through out all this time I > > have > > > never contemplated). My chest physician, however, was fantastic, and > > > started to book me in as the last patient of the day, so that I had > > all > > > the time I needed to talk. Part of the problems that I'd been having > > > was that the last time I'd seen my tx consultant he didn't give me > > > anything positive to hold on to. He gave me all the downsides of not > > > having a tx and all the downsides of having one, which really left > me > > > thinking 'what's the bloody point?'. > > > > > > I also think it was a kick back from the stress of moving. You know, > > > you hold things together while you have to, but once a bit of stress > > is > > > released you unravel like a tightly coiled spring. Interestingly my > > > chest physician wasn't surprised that I'd unravelled, but was > > surprised > > > that I hadn't unravelled sooner! Evidently she knows me better than > I > > > do [] > > > > > > I realise I am very lucky with my chest physician, and I'm so > grateful > > > that she is my doc. I'm still quite fragile emotionally, but at > least > > I > > > can go for days without having an episode now, rather than hours! I > > > have some coping strategies and am able to see an episode coming and > > can > > > usually get myself out of the situation before it becomes a trauma. > > > > > > It was partly this fragile emotional state that's kept me away. Just > > > not able to deal with things and sticking that big ostrich like head > > of > > > mine firmly in the sand. > > > > > > I'm booked to go in for my tx evaluation on 20th April. I was > supposed > > > to have gone the other week, but that got cancelled due to an > > emergency > > > on the ward and I was left without a bed. Rob and I had already left > > > and got the call to say it wasn't happening at the worst possible > > point > > > on the journey, stuck in a huge traffic jam and unable to turn round > > for > > > about 3 miles! > > > > > > Other than that, my pft's are stablish, I did have a nasty chest > > > infection at the beginning of the year which has caused a bit more > > > damage, which is annoying, and I had to raise the pred up again and > go > > > on some heavy duty anti-bi's to clear it, but am off them again now, > > > and, touch wood, haven't had a major infection since then. Not bad > > > since it's hayfever season and that usually ends up getting on my > > chest! > > > > > > Hope you are all well > > > > > > Love Ze xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Thanks, Zena! Jane UIP/IPF 12/1998 Dalton, Georgia > > > > > > > > > Hi all, > > > > > > Sorry I haven't been around, I had a problem with my lap-top, ended > up > > > calling it HAL out of 2001 a space odessy (I don't think you want to > > do > > > that Dave) I ended up karate chopping it and killing it outright > [[-(] > > > > > > I've also been battling depression. Never had to do that before, > it's > > > funny how it gets you isn't it. Tick along dealing with the big > > > things, you think you're doing ok. Burn the onions and it's the end > of > > > the world. I realised I needed help when I couldn't deal with the > > > washing up water being too hot! I didn't have the facility to think > > 'oh > > > the waters too hot, add some cold' but ended up in a quivering heap > on > > > the bed instead. Over here getting a counsellor to talk to is quite > a > > > long winded process and there is a waiting list of several months > > unless > > > you are on the brink of suicide, (which through out all this time I > > have > > > never contemplated). My chest physician, however, was fantastic, and > > > started to book me in as the last patient of the day, so that I had > > all > > > the time I needed to talk. Part of the problems that I'd been having > > > was that the last time I'd seen my tx consultant he didn't give me > > > anything positive to hold on to. He gave me all the downsides of not > > > having a tx and all the downsides of having one, which really left > me > > > thinking 'what's the bloody point?'. > > > > > > I also think it was a kick back from the stress of moving. You know, > > > you hold things together while you have to, but once a bit of stress > > is > > > released you unravel like a tightly coiled spring. Interestingly my > > > chest physician wasn't surprised that I'd unravelled, but was > > surprised > > > that I hadn't unravelled sooner! Evidently she knows me better than > I > > > do [] > > > > > > I realise I am very lucky with my chest physician, and I'm so > grateful > > > that she is my doc. I'm still quite fragile emotionally, but at > least > > I > > > can go for days without having an episode now, rather than hours! I > > > have some coping strategies and am able to see an episode coming and > > can > > > usually get myself out of the situation before it becomes a trauma. > > > > > > It was partly this fragile emotional state that's kept me away. Just > > > not able to deal with things and sticking that big ostrich like head > > of > > > mine firmly in the sand. > > > > > > I'm booked to go in for my tx evaluation on 20th April. I was > supposed > > > to have gone the other week, but that got cancelled due to an > > emergency > > > on the ward and I was left without a bed. Rob and I had already left > > > and got the call to say it wasn't happening at the worst possible > > point > > > on the journey, stuck in a huge traffic jam and unable to turn round > > for > > > about 3 miles! > > > > > > Other than that, my pft's are stablish, I did have a nasty chest > > > infection at the beginning of the year which has caused a bit more > > > damage, which is annoying, and I had to raise the pred up again and > go > > > on some heavy duty anti-bi's to clear it, but am off them again now, > > > and, touch wood, haven't had a major infection since then. Not bad > > > since it's hayfever season and that usually ends up getting on my > > chest! > > > > > > Hope you are all well > > > > > > Love Ze xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Ze that was a FANTASTIC outletting of what you've been experiencing... I too am seeing a Counsellor at the moment & the main topic is my life long habit of pouring 'concrete over my emotions'... she asked me to describe what I 'saw' in my lungs & I said CONCRETE...then she asked what would dissolve the concrete.. I said WATER.... & then I realised how MAJOR both those elements were in my life. As a child I was surrounded by tense angry people (parents & siblings) & I literally used to run away & hide & read Enid Blyton... emotions were definitely something to be really scared of....still are for me! Laughter is by far my favourite 'coping' mechanism! Water has always calmed me & made me feel safe (in spite of very nearly drowing in a flood as 3 year old!) I remember that sensation of drowning as if it was yesterday.. it wasn't scary at all as it was happening... what was fully terrifying was the aftermath.. with my mother screaming, being pumelled to breathe & tipped upside down & wacked on my back to drain the water out. They say small chikldren drown really easily because they 'accept' water ....something to do with womb experience is the theory.. well I believe that to be true! Now I don't know if I'll ever dissolve my concreted emotions, I don't even know that I want to.. but it was great to at least see the pattern....now I'd better go & choose some old crockery... that could be a great start! "Not Drowning -Waving.".. that's the name of a Rock Band in Oz... that could be my Motto! lots of love n' Hugs to you Warrior Princess, > > >> > >> > > Hi all,> > >> > > Sorry I haven't been around, I had a problem with my lap-top, ended> up> > > calling it HAL out of 2001 a space odessy (I don't think you want to> > do> > > that Dave) I ended up karate chopping it and killing it outright> [[-(]> > >> > > I've also been battling depression. Never had to do that before,> it's> > > funny how it gets you isn't it. Tick along dealing with the big> > > things, you think you're doing ok. Burn the onions and it's the end> of> > > the world. I realised I needed help when I couldn't deal with the> > > washing up water being too hot! I didn't have the facility to think> > 'oh> > > the waters too hot, add some cold' but ended up in a quivering heap> on> > > the bed instead. Over here getting a counsellor to talk to is quite> a> > > long winded process and there is a waiting list of several months> > unless> > > you are on the brink of suicide, (which through out all this time I> > have> > > never contemplated). My chest physician, however, was fantastic, and> > > started to book me in as the last patient of the day, so that I had> > all> > > the time I needed to talk. Part of the problems that I'd been having> > > was that the last time I'd seen my tx consultant he didn't give me> > > anything positive to hold on to. He gave me all the downsides of not> > > having a tx and all the downsides of having one, which really left> me> > > thinking 'what's the bloody point?'.> > >> > > I also think it was a kick back from the stress of moving. You know,> > > you hold things together while you have to, but once a bit of stress> > is> > > released you unravel like a tightly coiled spring. Interestingly my> > > chest physician wasn't surprised that I'd unravelled, but was> > surprised> > > that I hadn't unravelled sooner! Evidently she knows me better than> I> > > do []> > >> > > I realise I am very lucky with my chest physician, and I'm so> grateful> > > that she is my doc. I'm still quite fragile emotionally, but at> least> > I> > > can go for days without having an episode now, rather than hours! I> > > have some coping strategies and am able to see an episode coming and> > can> > > usually get myself out of the situation before it becomes a trauma.> > >> > > It was partly this fragile emotional state that's kept me away. Just> > > not able to deal with things and sticking that big ostrich like head> > of> > > mine firmly in the sand.> > >> > > I'm booked to go in for my tx evaluation on 20th April. I was> supposed> > > to have gone the other week, but that got cancelled due to an> > emergency> > > on the ward and I was left without a bed. Rob and I had already left> > > and got the call to say it wasn't happening at the worst possible> > point> > > on the journey, stuck in a huge traffic jam and unable to turn round> > for> > > about 3 miles!> > >> > > Other than that, my pft's are stablish, I did have a nasty chest> > > infection at the beginning of the year which has caused a bit more> > > damage, which is annoying, and I had to raise the pred up again and> go> > > on some heavy duty anti-bi's to clear it, but am off them again now,> > > and, touch wood, haven't had a major infection since then. Not bad> > > since it's hayfever season and that usually ends up getting on my> > chest!> > >> > > Hope you are all well> > >> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Ze that was a FANTASTIC outletting of what you've been experiencing... I too am seeing a Counsellor at the moment & the main topic is my life long habit of pouring 'concrete over my emotions'... she asked me to describe what I 'saw' in my lungs & I said CONCRETE...then she asked what would dissolve the concrete.. I said WATER.... & then I realised how MAJOR both those elements were in my life. As a child I was surrounded by tense angry people (parents & siblings) & I literally used to run away & hide & read Enid Blyton... emotions were definitely something to be really scared of....still are for me! Laughter is by far my favourite 'coping' mechanism! Water has always calmed me & made me feel safe (in spite of very nearly drowing in a flood as 3 year old!) I remember that sensation of drowning as if it was yesterday.. it wasn't scary at all as it was happening... what was fully terrifying was the aftermath.. with my mother screaming, being pumelled to breathe & tipped upside down & wacked on my back to drain the water out. They say small chikldren drown really easily because they 'accept' water ....something to do with womb experience is the theory.. well I believe that to be true! Now I don't know if I'll ever dissolve my concreted emotions, I don't even know that I want to.. but it was great to at least see the pattern....now I'd better go & choose some old crockery... that could be a great start! "Not Drowning -Waving.".. that's the name of a Rock Band in Oz... that could be my Motto! lots of love n' Hugs to you Warrior Princess, > > >> > >> > > Hi all,> > >> > > Sorry I haven't been around, I had a problem with my lap-top, ended> up> > > calling it HAL out of 2001 a space odessy (I don't think you want to> > do> > > that Dave) I ended up karate chopping it and killing it outright> [[-(]> > >> > > I've also been battling depression. Never had to do that before,> it's> > > funny how it gets you isn't it. Tick along dealing with the big> > > things, you think you're doing ok. Burn the onions and it's the end> of> > > the world. I realised I needed help when I couldn't deal with the> > > washing up water being too hot! I didn't have the facility to think> > 'oh> > > the waters too hot, add some cold' but ended up in a quivering heap> on> > > the bed instead. Over here getting a counsellor to talk to is quite> a> > > long winded process and there is a waiting list of several months> > unless> > > you are on the brink of suicide, (which through out all this time I> > have> > > never contemplated). My chest physician, however, was fantastic, and> > > started to book me in as the last patient of the day, so that I had> > all> > > the time I needed to talk. Part of the problems that I'd been having> > > was that the last time I'd seen my tx consultant he didn't give me> > > anything positive to hold on to. He gave me all the downsides of not> > > having a tx and all the downsides of having one, which really left> me> > > thinking 'what's the bloody point?'.> > >> > > I also think it was a kick back from the stress of moving. You know,> > > you hold things together while you have to, but once a bit of stress> > is> > > released you unravel like a tightly coiled spring. Interestingly my> > > chest physician wasn't surprised that I'd unravelled, but was> > surprised> > > that I hadn't unravelled sooner! Evidently she knows me better than> I> > > do []> > >> > > I realise I am very lucky with my chest physician, and I'm so> grateful> > > that she is my doc. I'm still quite fragile emotionally, but at> least> > I> > > can go for days without having an episode now, rather than hours! I> > > have some coping strategies and am able to see an episode coming and> > can> > > usually get myself out of the situation before it becomes a trauma.> > >> > > It was partly this fragile emotional state that's kept me away. Just> > > not able to deal with things and sticking that big ostrich like head> > of> > > mine firmly in the sand.> > >> > > I'm booked to go in for my tx evaluation on 20th April. I was> supposed> > > to have gone the other week, but that got cancelled due to an> > emergency> > > on the ward and I was left without a bed. Rob and I had already left> > > and got the call to say it wasn't happening at the worst possible> > point> > > on the journey, stuck in a huge traffic jam and unable to turn round> > for> > > about 3 miles!> > >> > > Other than that, my pft's are stablish, I did have a nasty chest> > > infection at the beginning of the year which has caused a bit more> > > damage, which is annoying, and I had to raise the pred up again and> go> > > on some heavy duty anti-bi's to clear it, but am off them again now,> > > and, touch wood, haven't had a major infection since then. Not bad> > > since it's hayfever season and that usually ends up getting on my> > chest!> > >> > > Hope you are all well> > >> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Ze that was a FANTASTIC outletting of what you've been experiencing... I too am seeing a Counsellor at the moment & the main topic is my life long habit of pouring 'concrete over my emotions'... she asked me to describe what I 'saw' in my lungs & I said CONCRETE...then she asked what would dissolve the concrete.. I said WATER.... & then I realised how MAJOR both those elements were in my life. As a child I was surrounded by tense angry people (parents & siblings) & I literally used to run away & hide & read Enid Blyton... emotions were definitely something to be really scared of....still are for me! Laughter is by far my favourite 'coping' mechanism! Water has always calmed me & made me feel safe (in spite of very nearly drowing in a flood as 3 year old!) I remember that sensation of drowning as if it was yesterday.. it wasn't scary at all as it was happening... what was fully terrifying was the aftermath.. with my mother screaming, being pumelled to breathe & tipped upside down & wacked on my back to drain the water out. They say small chikldren drown really easily because they 'accept' water ....something to do with womb experience is the theory.. well I believe that to be true! Now I don't know if I'll ever dissolve my concreted emotions, I don't even know that I want to.. but it was great to at least see the pattern....now I'd better go & choose some old crockery... that could be a great start! "Not Drowning -Waving.".. that's the name of a Rock Band in Oz... that could be my Motto! lots of love n' Hugs to you Warrior Princess, > > >> > >> > > Hi all,> > >> > > Sorry I haven't been around, I had a problem with my lap-top, ended> up> > > calling it HAL out of 2001 a space odessy (I don't think you want to> > do> > > that Dave) I ended up karate chopping it and killing it outright> [[-(]> > >> > > I've also been battling depression. Never had to do that before,> it's> > > funny how it gets you isn't it. Tick along dealing with the big> > > things, you think you're doing ok. Burn the onions and it's the end> of> > > the world. I realised I needed help when I couldn't deal with the> > > washing up water being too hot! I didn't have the facility to think> > 'oh> > > the waters too hot, add some cold' but ended up in a quivering heap> on> > > the bed instead. Over here getting a counsellor to talk to is quite> a> > > long winded process and there is a waiting list of several months> > unless> > > you are on the brink of suicide, (which through out all this time I> > have> > > never contemplated). My chest physician, however, was fantastic, and> > > started to book me in as the last patient of the day, so that I had> > all> > > the time I needed to talk. Part of the problems that I'd been having> > > was that the last time I'd seen my tx consultant he didn't give me> > > anything positive to hold on to. He gave me all the downsides of not> > > having a tx and all the downsides of having one, which really left> me> > > thinking 'what's the bloody point?'.> > >> > > I also think it was a kick back from the stress of moving. You know,> > > you hold things together while you have to, but once a bit of stress> > is> > > released you unravel like a tightly coiled spring. Interestingly my> > > chest physician wasn't surprised that I'd unravelled, but was> > surprised> > > that I hadn't unravelled sooner! Evidently she knows me better than> I> > > do []> > >> > > I realise I am very lucky with my chest physician, and I'm so> grateful> > > that she is my doc. I'm still quite fragile emotionally, but at> least> > I> > > can go for days without having an episode now, rather than hours! I> > > have some coping strategies and am able to see an episode coming and> > can> > > usually get myself out of the situation before it becomes a trauma.> > >> > > It was partly this fragile emotional state that's kept me away. Just> > > not able to deal with things and sticking that big ostrich like head> > of> > > mine firmly in the sand.> > >> > > I'm booked to go in for my tx evaluation on 20th April. I was> supposed> > > to have gone the other week, but that got cancelled due to an> > emergency> > > on the ward and I was left without a bed. Rob and I had already left> > > and got the call to say it wasn't happening at the worst possible> > point> > > on the journey, stuck in a huge traffic jam and unable to turn round> > for> > > about 3 miles!> > >> > > Other than that, my pft's are stablish, I did have a nasty chest> > > infection at the beginning of the year which has caused a bit more> > > damage, which is annoying, and I had to raise the pred up again and> go> > > on some heavy duty anti-bi's to clear it, but am off them again now,> > > and, touch wood, haven't had a major infection since then. Not bad> > > since it's hayfever season and that usually ends up getting on my> > chest!> > >> > > Hope you are all well> > >> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Who would have ever suspected you using laughter to cope? Surely the SGIO alter ego doesn't give a clue. We all learned ways of dealing very young in life and ways of expressing or hiding our emotions. We even learned what emotions, if any, were acceptable in our narrow world. Often our parents weren't trying to teach us those things, but the lessons were there. Everything in a child's life teaches them something. That can be good or bad. The world I grew up in valued Thought and Accomplishment, not emotions or feelings. I was 56 before I learned otherwise. While most parents meant well, they seldom understood the impact everything that takes place in a child's life has. > > > > > > > > > > > > Hi all, > > > > > > > > Sorry I haven't been around, I had a problem with my lap-top, > ended > > up > > > > calling it HAL out of 2001 a space odessy (I don't think you want > to > > > do > > > > that Dave) I ended up karate chopping it and killing it outright > > [[-(] > > > > > > > > I've also been battling depression. Never had to do that before, > > it's > > > > funny how it gets you isn't it. Tick along dealing with the big > > > > things, you think you're doing ok. Burn the onions and it's the > end > > of > > > > the world. I realised I needed help when I couldn't deal with the > > > > washing up water being too hot! I didn't have the facility to > think > > > 'oh > > > > the waters too hot, add some cold' but ended up in a quivering > heap > > on > > > > the bed instead. Over here getting a counsellor to talk to is > quite > > a > > > > long winded process and there is a waiting list of several months > > > unless > > > > you are on the brink of suicide, (which through out all this time > I > > > have > > > > never contemplated). My chest physician, however, was fantastic, > and > > > > started to book me in as the last patient of the day, so that I > had > > > all > > > > the time I needed to talk. Part of the problems that I'd been > having > > > > was that the last time I'd seen my tx consultant he didn't give me > > > > anything positive to hold on to. He gave me all the downsides of > not > > > > having a tx and all the downsides of having one, which really left > > me > > > > thinking 'what's the bloody point?'. > > > > > > > > I also think it was a kick back from the stress of moving. You > know, > > > > you hold things together while you have to, but once a bit of > stress > > > is > > > > released you unravel like a tightly coiled spring. Interestingly > my > > > > chest physician wasn't surprised that I'd unravelled, but was > > > surprised > > > > that I hadn't unravelled sooner! Evidently she knows me better > than > > I > > > > do [] > > > > > > > > I realise I am very lucky with my chest physician, and I'm so > > grateful > > > > that she is my doc. I'm still quite fragile emotionally, but at > > least > > > I > > > > can go for days without having an episode now, rather than hours! > I > > > > have some coping strategies and am able to see an episode coming > and > > > can > > > > usually get myself out of the situation before it becomes a > trauma. > > > > > > > > It was partly this fragile emotional state that's kept me away. > Just > > > > not able to deal with things and sticking that big ostrich like > head > > > of > > > > mine firmly in the sand. > > > > > > > > I'm booked to go in for my tx evaluation on 20th April. I was > > supposed > > > > to have gone the other week, but that got cancelled due to an > > > emergency > > > > on the ward and I was left without a bed. Rob and I had already > left > > > > and got the call to say it wasn't happening at the worst possible > > > point > > > > on the journey, stuck in a huge traffic jam and unable to turn > round > > > for > > > > about 3 miles! > > > > > > > > Other than that, my pft's are stablish, I did have a nasty chest > > > > infection at the beginning of the year which has caused a bit more > > > > damage, which is annoying, and I had to raise the pred up again > and > > go > > > > on some heavy duty anti-bi's to clear it, but am off them again > now, > > > > and, touch wood, haven't had a major infection since then. Not bad > > > > since it's hayfever season and that usually ends up getting on my > > > chest! > > > > > > > > Hope you are all well > > > > > > > > Love Ze xx > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 denise, that's exactly what i do and how the ocean makes me fell! i live up the coast in lompoc just 7 miles from the ocean. enjoy ken o. To: Breathe-Support Sent: Wednesday, April 15, 2009 11:56:34 AMSubject: Re: Re: Hello again! , Water is my calming agent too. When I am feeling overwhelmed I go out to my ocean and imagine myself walking far out into the waves, letting the water swirl over my head and breathing in the salt water. I can almost feel the salty broth healing my lungs. It instantly calms me and I feel refreshed and rejuvinated to get through the next days. When I am too busy for my ocean walks I can definately feel the stress rising. R. (53) Sarcoid/PF 3/2006 Carlsbad, California From: <gina.francis@ bigpond.com>Subject: Re: Hello again!To: Breathe-Support@ yahoogroups. comDate: Sunday, April 12, 2009, 5:29 PM Ze that was a FANTASTIC outletting of what you've been experiencing. .. I too am seeing a Counsellor at the moment & the main topic is my life long habit of pouring 'concrete over my emotions'... she asked me to describe what I 'saw' in my lungs & I said CONCRETE...then she asked what would dissolve the concrete.. I said WATER.... & then I realised how MAJOR both those elements were in my life. As a child I was surrounded by tense angry people (parents & siblings) & I literally used to run away & hide & read Enid Blyton... emotions were definitely something to be really scared of....still are for me! Laughter is by far my favourite 'coping' mechanism! Water has always calmed me & made me feel safe (in spite of very nearly drowing in a flood as 3 year old!) I remember that sensation of drowning as if it was yesterday.. it wasn't scary at all as it was happening... what was fully terrifying was the aftermath.. with my mother screaming, being pumelled to breathe & tipped upside down & wacked on my back to drain the water out. They say small chikldren drown really easily because they 'accept' water ....something to do with womb experience is the theory.. well I believe that to be true! Now I don't know if I'll ever dissolve my concreted emotions, I don't even know that I want to... but it was great to at least see the pattern....now I'd better go & choose some old crockery... that could be a great start! "Not Drowning -Waving.".. that's the name of a Rock Band in Oz... that could be my Motto! lots of love n' Hugs to you Warrior Princess, > > >> > >> > > Hi all,> > >> > > Sorry I haven't been around, I had a problem with my lap-top, ended> up> > > calling it HAL out of 2001 a space odessy (I don't think you want to> > do> > > that Dave) I ended up karate chopping it and killing it outright> [[-(]> > >> > > I've also been battling depression. Never had to do that before,> it's> > > funny how it gets you isn't it. Tick along dealing with the big> > > things, you think you're doing ok. Burn the onions and it's the end> of> > > the world. I realised I needed help when I couldn't deal with the> > > washing up water being too hot! I didn't have the facility to think> > 'oh> > > the waters too hot, add some cold' but ended up in a quivering heap> on> > > the bed instead.. Over here getting a counsellor to talk to is quite> a> > > long winded process and there is a waiting list of several months> > unless> > > you are on the brink of suicide, (which through out all this time I> > have> > > never contemplated) . My chest physician, however, was fantastic, and> > > started to book me in as the last patient of the day, so that I had> > all> > > the time I needed to talk. Part of the problems that I'd been having> > > was that the last time I'd seen my tx consultant he didn't give me> > > anything positive to hold on to. He gave me all the downsides of not> > > having a tx and all the downsides of having one, which really left> me> > > thinking 'what's the bloody point?'.> > >> > > I also think it was a kick back from the stress of moving. You know,> > > you hold things together while you have to, but once a bit of stress> > is> > > released you unravel like a tightly coiled spring. Interestingly my> > > chest physician wasn't surprised that I'd unravelled, but was> > surprised> > > that I hadn't unravelled sooner! Evidently she knows me better than> I> > > do []> > >> > > I realise I am very lucky with my chest physician, and I'm so> grateful> > > that she is my doc. I'm still quite fragile emotionally, but at> least> > I> > > can go for days without having an episode now, rather than hours! I> > > have some coping strategies and am able to see an episode coming and> > can> > > usually get myself out of the situation before it becomes a trauma.> > >> > > It was partly this fragile emotional state that's kept me away. Just> > > not able to deal with things and sticking that big ostrich like head> > of> > > mine firmly in the sand..> > >> > > I'm booked to go in for my tx evaluation on 20th April. I was> supposed> > > to have gone the other week, but that got cancelled due to an> > emergency> > > on the ward and I was left without a bed. Rob and I had already left> > > and got the call to say it wasn't happening at the worst possible> > point> > > on the journey, stuck in a huge traffic jam and unable to turn round> > for> > > about 3 miles!> > >> > > Other than that, my pft's are stablish, I did have a nasty chest> > > infection at the beginning of the year which has caused a bit more> > > damage, which is annoying, and I had to raise the pred up again and> go> > > on some heavy duty anti-bi's to clear it, but am off them again now,> > > and, touch wood, haven't had a major infection since then. Not bad> > > since it's hayfever season and that usually ends up getting on my> > chest!> > >> > > Hope you are all well> > >> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
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