Hey there.
So, the last week has been a sobering one. I decided to ask my consultant out straight about what exactly the hold up is with the magical transplant surgery that could possibly represent a cure for me. And it turns out that someone is holding it up. I don't know if they're holding it up because it's me that needs the surgery and not some cute little 5 year old who doesn't have a history of going crazy, or whether it's an administrative thing, and the hold up is because it hasn't cleared all the myriad of committees that are assembled to determine whether ot not these surgeries should be done. I don't suppose it matters, as the outcome is the same. But my surgeon did, very nicely, reinforce the fact that he is fighring on my behalf, and as soon as he can do it, he will. I hope that's one day soon, because personally, my quality of life is not that great right now, and has only been declining since I first fell ill. Sometimes, life is a bitch. But if you keep kickiug back, eventually the bitch buggers off!
Other news... a very nice person gave me two PS2 Consoles and about 50 games for them. I'm cleaning them up so that I can give them to the children's ward. Maybe it'll make them smile for a while. God knows, it's hard enough being ill when you're older, those kids must suffer some. It's horrible to think about it, but I say a little prayer for sick kids every day, and throw a request into the air that they all be cured and looked after. Sounds cheesy, but that's my little secret.
Friday I am not looking forward to. I have an appointment at the Breast Cancer service. My appointment time is early morning, but it says I could be there up to five hours. Friday is the day I find out if this lump is just a lump, or something more sinister. I have a feeling about it, which is not good. Everyone I know who has been through something similar says that they knew. So we shall see. This week has been hard to get through, and it's only tuesday! I am really, reaslly stressed, but luckily I am prescribed Oxycodone and Oxycontin for my back problem, and it's masking my fear. It's not doing a lot for the pain though!
I saw my psychiatrist today, and he suggested I try a new sleeping pill. The trouble is, it's so new that noone can get hold of it! This is a problem that I have often, so am not worrying about it; I shall proceed with the temazapam until then.
My nebuliser is about to finish, so I shall sign off for now. Keep looking after yourself, and fight like anything to get the healthcare you need. ANything I can do, just let me know....
XX
Tuesday, 29 November 2011
Thursday, 24 November 2011
What does TS feel like?
Well, for me it happened so gradually that it's really hard to say. I had been on a ventilator in ITU for some weeks, and when they took me off it I was told that it was natural to feel a bit breathless. Only I wasn't just breathless, I was breathless plus plus plus, if you know what I mean. I was too out of breath to speak, and I couldn't stand or move anywhere without a huge amount of support. And the breathlessness didn't get better, it got worse. I became too restricted to keep food or water down, and as a resulot of that, I passed into a borderline coma because of unreadable levels of blood sugar. All very traumatic.
My brain was telling me that I was slowly suffoicating, but all the doctors were telling me it was in my head! It felt like I was dry drowning, and my instinct was to fight it. Because of this, I could not sleep or rest at all. I was incredibly exhausted, beyond anything I had ever felt before. And that made me really over emotional.
Eventually, they discharged me from hospital, and I found myself alone in the house with my cousin, still unable to catch any useful breath. I knew that if I stayed there I would die, so I used my final oxygen supplies to throw myself down the stairs. I knew that they would have to take me back to hospital, and it was my hope that someone would find out what was wrong.
Only I didn't factor in that my Uncle and Aunt and Cousins, for that matter, did not react as normal people. They called the out of hours GP. It being the countryside, the GP came to the house and his first words were 'call an ambulance NOW'. While they were doing that, he gave me a nebuliser. The nebuliser didn't help at all. The narrowing in my airway was too great. So he did something that was of more use than anything else. He looked me in the eye and told me that he was here to help, he would stay with me until they found out what was wrong, and then he held my hand and hugged me. Not in a creepy way, but he realised that I felt very alone and he made me feel so much better by doing that.
So I got back to hospital. By this point, I was so short of breath that my body was responding physically by grabbing at the air to try and physically catch some oxygen. It's an involuntary reaction, you don't even think about it. A very alert registrar came to my bedside and said that he was sure I had some kind of obstruction in my airway, but he couldn't see it with the tools on the ward. He said that I should relax, not eat or drink anything (impossible by then anyway), and he would organise some tests.
I had X Rays, CT and MRI scans, blood tests, ABG etc, and finally they took me down to the ENT clinic to be scoped (when they pass a fine camera into the airway). He apologised to me as it was a traumatic experience; given that my airway had clearly narrowed, to have something else in their blocking it was very distressing. He told me that I had to go to theatre. He couldn't see a blockage, but he explained that I had a serious wheeze and stridor, and it was a matter of life and death, he felt that the blockage was too low down to be seen with the scope they had, but it was most certainly there.
He rang theatre to tell them I was on my way. And he got into an argument with someone. They told him they were fixing a broken nose next, and he told them that the broken nose could 'damn well wait' as he had an 18 year old about to go into full arrest. I didn't realise entirely that he meant me, I was just too ill to take it in.
So off to theatre I went. The lovely anaesthetic people held my hands and stroked my forehead, murmering gently to me as I went off to sleep. They told me that it was all going to be okay, and I would feel a lot better when I woke up. They weren't wrong. I woke up in a room with two doctors by my side. One of them smiled at me and said 'How do you feel?'. I took a deep breath, smiled broadly and said 'OMG, I can breeeeeath!'. And my next word was 'Ouch!'. She said to me, I will just give you something for the pain, and she went to get a tablet which she popped under my tongue and said it would dissolve. I don't know what it was, but it certainly worked. They put a needle into the muscle on my right leg and gave me something that I think was liquid codeine. It worked incredibly well.
I was sent off to the HDU. I instantly felt a lot better because I could breathe a lot better than before. My appetite and thirst came straight back. In the HDU, there was a nurse who told me that she too came from Essex, and she asked me if I'd like some food and something to drink. And I said 'oh yes please!'/ She went to the staff cafeteria and brought me a little bit of everything. And I thoroughly enjoyed it.
The next day, a doctor came to see me and said 'do you realise that you will have this tracheostomy forever? I clearly didn't. I was so fixated on the fact that I felt so much better, that I hadn't even registered that I had a stoma.
He then said 'and because of your stenosis, which is untreatable, you will never speak again. Ever. And at this point, I went into deep shock.
It transpired that my breathing problems before had been cause by a stenosis that was blocking almost all my airway in every direction. They estimated that had they not got me to theatre when they did, my trachea would have blocked completely within an hour or two. And because no air at all was now passing through my upper trachea, I could not speak.
So there I was, just turned 18 years old, long blonde hair falling out by the handful (I did go almost totally bald), a tube in my throat, and no voice at all. And they told me that this would be my life, forever.
So in short, when people say to me 'what does TS feel like?' I answer this; it is distressing, painful, frightening, exhausting, emotional, life destroying and absolutely the most terrifying thing I have ever experienced in my life. It feels as if someone is leaning on your windpipe with all their weight, and you have to fight for every breath.
If you have the chronic variety of TS, like me, you will find yourself going through traumatic and life changing experiences. But you can survive, it just takes a lot of will to live.
I hope I haven't bored you with this, lol, there was no short way of explaining it. Take care, and thank you for reading :o)
Tata for now, and look after yourself X
My brain was telling me that I was slowly suffoicating, but all the doctors were telling me it was in my head! It felt like I was dry drowning, and my instinct was to fight it. Because of this, I could not sleep or rest at all. I was incredibly exhausted, beyond anything I had ever felt before. And that made me really over emotional.
Eventually, they discharged me from hospital, and I found myself alone in the house with my cousin, still unable to catch any useful breath. I knew that if I stayed there I would die, so I used my final oxygen supplies to throw myself down the stairs. I knew that they would have to take me back to hospital, and it was my hope that someone would find out what was wrong.
Only I didn't factor in that my Uncle and Aunt and Cousins, for that matter, did not react as normal people. They called the out of hours GP. It being the countryside, the GP came to the house and his first words were 'call an ambulance NOW'. While they were doing that, he gave me a nebuliser. The nebuliser didn't help at all. The narrowing in my airway was too great. So he did something that was of more use than anything else. He looked me in the eye and told me that he was here to help, he would stay with me until they found out what was wrong, and then he held my hand and hugged me. Not in a creepy way, but he realised that I felt very alone and he made me feel so much better by doing that.
So I got back to hospital. By this point, I was so short of breath that my body was responding physically by grabbing at the air to try and physically catch some oxygen. It's an involuntary reaction, you don't even think about it. A very alert registrar came to my bedside and said that he was sure I had some kind of obstruction in my airway, but he couldn't see it with the tools on the ward. He said that I should relax, not eat or drink anything (impossible by then anyway), and he would organise some tests.
I had X Rays, CT and MRI scans, blood tests, ABG etc, and finally they took me down to the ENT clinic to be scoped (when they pass a fine camera into the airway). He apologised to me as it was a traumatic experience; given that my airway had clearly narrowed, to have something else in their blocking it was very distressing. He told me that I had to go to theatre. He couldn't see a blockage, but he explained that I had a serious wheeze and stridor, and it was a matter of life and death, he felt that the blockage was too low down to be seen with the scope they had, but it was most certainly there.
He rang theatre to tell them I was on my way. And he got into an argument with someone. They told him they were fixing a broken nose next, and he told them that the broken nose could 'damn well wait' as he had an 18 year old about to go into full arrest. I didn't realise entirely that he meant me, I was just too ill to take it in.
So off to theatre I went. The lovely anaesthetic people held my hands and stroked my forehead, murmering gently to me as I went off to sleep. They told me that it was all going to be okay, and I would feel a lot better when I woke up. They weren't wrong. I woke up in a room with two doctors by my side. One of them smiled at me and said 'How do you feel?'. I took a deep breath, smiled broadly and said 'OMG, I can breeeeeath!'. And my next word was 'Ouch!'. She said to me, I will just give you something for the pain, and she went to get a tablet which she popped under my tongue and said it would dissolve. I don't know what it was, but it certainly worked. They put a needle into the muscle on my right leg and gave me something that I think was liquid codeine. It worked incredibly well.
I was sent off to the HDU. I instantly felt a lot better because I could breathe a lot better than before. My appetite and thirst came straight back. In the HDU, there was a nurse who told me that she too came from Essex, and she asked me if I'd like some food and something to drink. And I said 'oh yes please!'/ She went to the staff cafeteria and brought me a little bit of everything. And I thoroughly enjoyed it.
The next day, a doctor came to see me and said 'do you realise that you will have this tracheostomy forever? I clearly didn't. I was so fixated on the fact that I felt so much better, that I hadn't even registered that I had a stoma.
He then said 'and because of your stenosis, which is untreatable, you will never speak again. Ever. And at this point, I went into deep shock.
It transpired that my breathing problems before had been cause by a stenosis that was blocking almost all my airway in every direction. They estimated that had they not got me to theatre when they did, my trachea would have blocked completely within an hour or two. And because no air at all was now passing through my upper trachea, I could not speak.
So there I was, just turned 18 years old, long blonde hair falling out by the handful (I did go almost totally bald), a tube in my throat, and no voice at all. And they told me that this would be my life, forever.
So in short, when people say to me 'what does TS feel like?' I answer this; it is distressing, painful, frightening, exhausting, emotional, life destroying and absolutely the most terrifying thing I have ever experienced in my life. It feels as if someone is leaning on your windpipe with all their weight, and you have to fight for every breath.
If you have the chronic variety of TS, like me, you will find yourself going through traumatic and life changing experiences. But you can survive, it just takes a lot of will to live.
I hope I haven't bored you with this, lol, there was no short way of explaining it. Take care, and thank you for reading :o)
Tata for now, and look after yourself X
Tuesday, 22 November 2011
It's still there.....
Enough said really. The lump is still there. I have poked it, prodded it, even attempted to stick sterile needles into it. This is driving me crazy, I just want to know what it is; do I or do I not have Cancer?
If it were to be the big C, then I could cope with that. It;s one of those things that I could set my mind to fight as if it were a separate physicalk opponent. I picture myself as one of the knights of olden days, and the tumours would be my sworn enemy, with whom I must fight to the death.... But I clearly have too much time to think.
Regardless of all the traumatic events going on around me, I wanted to talk to you today about the wholke routine of looking after yourself when you have TS. This routine will vary from person to person, depending on things like whether or not you have a trach or a T tube, a stent or a permanent stome, or if you are going au naturel.
My routine at the moment begins with a whole lot of medication. I take five different painkillers, four to five times a day. These are to stop me going crazy from the pain. I take lithium carbonate one or two times a day. Sometimes never, but that's a whole other story. I take carbocisteine, to loosen up the secretions in my aireway, and to thin them down and make it possible for me to cough them out, and harder for them to stick lioke glue to my stent and block it. This drug is my wonder drug, and my life before it was becoming very very difficult. During the summer, I woiuld be admitted to hospital every week with obstructions and chest infections. The final part of my routine is to nebulise. I do this a minimum of four times a day, and more often if required. The nebulisers keep me well by keeping my airway moist, and by keeping the secretions in my airway loose. My cough is not powerful enopugh to clear my airway, so most of these drugs are prescribed to help me with that. Finally, I take a long term antibiotic, to help stop my poor clogged up lungs from becoming damaged from infection.
I do all of this every single day, There are days when I feel mentally as if I just cannot do it any morem but I remember well what it is like to not be able to breathe at all, and it is because of that that I never miss a treatment.
You have to find a way to make it work for you. I have managed to go on holiday by virtue of good planning. I have however missed out on several nights out because my airway will not clear enough for me to come off the nebuliser.
Being tired is not a reason to skip your treatment regime. Doing so will make you ill. Skipping nebulisers in particular will clog up your small airways and make you almost guaranteed to get an infection. You have to take responsibility for your own health and your own health care to a certain extent. You can do it!!
Again, being fed up or bored is not a reason to skip your treatment regime. Getting arrested is still not a reason; you have to tell them you are serioously unwell and need treatment, and they must comply,
You get the picture; skipping treatment will lead to obstructions and infections, neither of which are nice. So on those days when you are exhausted and you just want to sleep, put the nebuliser next to your bedm hook yourself up. and you are free to doze. That's how I manage it.
It doesn't guarantee you good health, but not doing it almost certainly guarantees you bad health. I've been there, and I'm certain many of you guys have too. I hope we never get ill like that again.
Take care, and good breathing to all of you :o)
If it were to be the big C, then I could cope with that. It;s one of those things that I could set my mind to fight as if it were a separate physicalk opponent. I picture myself as one of the knights of olden days, and the tumours would be my sworn enemy, with whom I must fight to the death.... But I clearly have too much time to think.
Regardless of all the traumatic events going on around me, I wanted to talk to you today about the wholke routine of looking after yourself when you have TS. This routine will vary from person to person, depending on things like whether or not you have a trach or a T tube, a stent or a permanent stome, or if you are going au naturel.
My routine at the moment begins with a whole lot of medication. I take five different painkillers, four to five times a day. These are to stop me going crazy from the pain. I take lithium carbonate one or two times a day. Sometimes never, but that's a whole other story. I take carbocisteine, to loosen up the secretions in my aireway, and to thin them down and make it possible for me to cough them out, and harder for them to stick lioke glue to my stent and block it. This drug is my wonder drug, and my life before it was becoming very very difficult. During the summer, I woiuld be admitted to hospital every week with obstructions and chest infections. The final part of my routine is to nebulise. I do this a minimum of four times a day, and more often if required. The nebulisers keep me well by keeping my airway moist, and by keeping the secretions in my airway loose. My cough is not powerful enopugh to clear my airway, so most of these drugs are prescribed to help me with that. Finally, I take a long term antibiotic, to help stop my poor clogged up lungs from becoming damaged from infection.
I do all of this every single day, There are days when I feel mentally as if I just cannot do it any morem but I remember well what it is like to not be able to breathe at all, and it is because of that that I never miss a treatment.
You have to find a way to make it work for you. I have managed to go on holiday by virtue of good planning. I have however missed out on several nights out because my airway will not clear enough for me to come off the nebuliser.
Being tired is not a reason to skip your treatment regime. Doing so will make you ill. Skipping nebulisers in particular will clog up your small airways and make you almost guaranteed to get an infection. You have to take responsibility for your own health and your own health care to a certain extent. You can do it!!
Again, being fed up or bored is not a reason to skip your treatment regime. Getting arrested is still not a reason; you have to tell them you are serioously unwell and need treatment, and they must comply,
You get the picture; skipping treatment will lead to obstructions and infections, neither of which are nice. So on those days when you are exhausted and you just want to sleep, put the nebuliser next to your bedm hook yourself up. and you are free to doze. That's how I manage it.
It doesn't guarantee you good health, but not doing it almost certainly guarantees you bad health. I've been there, and I'm certain many of you guys have too. I hope we never get ill like that again.
Take care, and good breathing to all of you :o)
Monday, 21 November 2011
Decisions, decisions...
Well, my ent appointment was a washout. He had a look at the top of the stent, said 'it's still there', and that was it. I mean, I could have told HIM that!! He told me that they are only allowing them to do these transplants on people who are imminently at deaths doors. So, while my condition is serious, as I am plodding along with the stensts, the government expects me to remain that way. They are ignoring the fact that alll of the tissue in my airway is no stone like scar tissue, and that leaves me ripe for a collapse or obstruction/arrest at any time. Do they expect me to wait for that? Fucking idiots, I hope they boil in hell.
And as for this lump, I can't take the anticipation. I have a little sharp razor, and an almost copnstant supply of diazepam. And I confess, my brain is asking me whether or not to cut it out myself. As I say, decisions decisions... My feelings regarding my airway are similar. I guess that I am in what they would call a critical but stable situation. So what would happen if I were to induce a slightly less stable situation? If it looks shaky, they would have to fix it. Properly. And they wouldn't have to explain themselves to the givernment, would they? I would fit the criteria fine.
I'm not saying I will do this today, but it feels good to at least have a plan. I will need the surgery eventually anyway, so all I would be doing is potentially bringing the date forward. Hmmmm...
I don't advocate self surgery, by the way. Where airways are concerned, it's best left to the experts. My situation is different to most people though; I am already dying, albeit slowly, from the complications of the TS. So death in my case would be sad, but inevitable. Until that moment that I cannot stand to be alive any more, I will keep fighting tooth and nail for survival. Life is a gift. Breathing does help you appreciate it though!!
Have a lovely daqy, and get out there and smell the fresh air. If you live in London, it's probably better to stay inside and avoid the traffic fumes!!
And as for this lump, I can't take the anticipation. I have a little sharp razor, and an almost copnstant supply of diazepam. And I confess, my brain is asking me whether or not to cut it out myself. As I say, decisions decisions... My feelings regarding my airway are similar. I guess that I am in what they would call a critical but stable situation. So what would happen if I were to induce a slightly less stable situation? If it looks shaky, they would have to fix it. Properly. And they wouldn't have to explain themselves to the givernment, would they? I would fit the criteria fine.
I'm not saying I will do this today, but it feels good to at least have a plan. I will need the surgery eventually anyway, so all I would be doing is potentially bringing the date forward. Hmmmm...
I don't advocate self surgery, by the way. Where airways are concerned, it's best left to the experts. My situation is different to most people though; I am already dying, albeit slowly, from the complications of the TS. So death in my case would be sad, but inevitable. Until that moment that I cannot stand to be alive any more, I will keep fighting tooth and nail for survival. Life is a gift. Breathing does help you appreciate it though!!
Have a lovely daqy, and get out there and smell the fresh air. If you live in London, it's probably better to stay inside and avoid the traffic fumes!!
Sunday, 20 November 2011
All will be revealed.
So, tomorrow is a new day, and it's the beginning of a new week. And a very important week on the health front. Essentially, all will be revealed. I hope/ I don't deal well with stress or anticipation, so I hope my oncology appointment arrives within the designated amount of time and then I get to find out what they have planned with me. Once I know what's happenning, I can deal with it. But the not knowing has always been a problem. I am a control freak, lol.
Also, tomorrow I get to find out if the TS is still killing me slowly, or if they have any new and innovative ideas on how to treat me. My airway has turned to stone because of all the scarring from the surgery, and it is partly that which is making regular treatments so redundant. I am an optimistic person, and I do believe that they will find a way to manage my TS better, if not cure it. I will keep you posted.
Anyways, night night for now; be good peeps and nebulise and do your meds before bed always. It helps you stay healthy, yes, but it also helps you get a much better night sleep. And have nicer dreams :o)
Also, tomorrow I get to find out if the TS is still killing me slowly, or if they have any new and innovative ideas on how to treat me. My airway has turned to stone because of all the scarring from the surgery, and it is partly that which is making regular treatments so redundant. I am an optimistic person, and I do believe that they will find a way to manage my TS better, if not cure it. I will keep you posted.
Anyways, night night for now; be good peeps and nebulise and do your meds before bed always. It helps you stay healthy, yes, but it also helps you get a much better night sleep. And have nicer dreams :o)
Saturday, 19 November 2011
Final Exit
Hi there.
I don't mean to be morbid, but I wondered how many of you are aware of the risks of TS. Do you realise, for example, that it may eventually be deemed incurable, once you've tried all the drugs, physio, surgery and grafts and transplants that are available to you, bio engineered or otherwise? So what happens next?
In my case, it happened gradually. I had several years where, although my health was bad, I was basiacally able to work. I just had long periods of coughing and spluttering, and many, many weeks in and out of hospital having suirgery, and IV antibiotics. I could live what was a basically normal life, with just a few restrictions.
Then I became too ill to work. I tried to work, but people kept complaining that I was too slow, too tired, I looked half asleep, I needed to go quicker, I was disgusting and should be kept in a box! I was exhausted and in a lot of pain. But so long as I had a lot of rest, I could get involved with voluntary work, and I managed to do some good for Chester society.
And then I became dependent on the nebuliser. I developed a problem whereby my lungs had become so damaged that I produced thick and very sticky mucus. This problem, brionchiectasis, combined with a very narrow airway with a stent in situ), meant that I experienced in excess of 20 near fatal blockages every year, for five years in a row.
I then discovered mucodyne, which was a miracle drug for me. But the mucus had done a lot of damage to my lungs, and it just hurt to breathe so much. I tried to go back to work, but I was easily tired, breathless, I had toi drink non stop, which led to more bathroom breaks than average lol, and on more than one occasion I had to leave instantly to get to hospital to be medicated for almost total blockages resulting from mucus plugs. It was a constant struggle and I had to take days off work not for the sake of my health, but for the sake of my life. My employers in some cases were less than understanding. Many of them openly accused me of faking, or of overexaggerating what was wrong with me. And to top it all, I had at the time what was undiagnosed, and therefore unmedicated bipolar disorder type 1, which made me either so depressed and almost catatonic that i was almost impossible to communicate with, or so overexcited that some people told me it made their head hurt to be subjected to the constant rush of ideas that was going through my mind. I was in a very difficult situation and I couldn't win.
And then my airway deteriorated to the point where it was classed as untreatable with currently available technology. ANd I was unable to work, which was a blow because I really wanted to. They told me quite bluntly at one of my appointment two years ago that my TS was most likely going to be terminal. And I smiled, and said thank you. Then I went home and made dinner for my husband, and asked him about his day. It took weeks to sink in.
Which leads me to my question of today. Have you ever made plans and preparations for what you would like to happen after you die? Even if the TS can be cured or controlled, and is not the cause of your death, you should really leave instructions for your family in the event of your death; it would save them from having to deal with that stuff at a time when all they want to do is cry. And they might find it coforting to know that you thought enough of them to take that worry away from them.
I have made it clear to everybody that my ideal death, if the pain and lack of available air to breathe become too much, that I wouyld like to go to an assissted suicide clinic in switzerland. It's not for everybody, and I'm not promoting this or even advocating it. It's just something I feel may be right for me.
I have also planned for what may happen if I cannot complete the process required for my first choie. I would like to be cremated. The idea of being buried ina box makes my skin creep. It's frightening. I would like my ashes to be scattered over London, the City where I have lived most of my life, the place I was born and bred. I don't want a big do at my cremation. It would be nice if they could find a way of playing my fabvourite tunes from my ipode for the hours before I am crispy fried, lol. And then just as the gates to the chamber open, maybe they could play 'thought I'd died and gone to heaven'. hehe, my idea of an apt song.
And then maybe everyone could have a drink and say cheers to me. And then they can leave me be. I will be fitted for my angel wings and hello, and learning how to fly up to the pearly gates. Can't wait!
Ultimately, I think that if I have made plans for my final destination, it will ease the stress a little for my husband. And I love him enough to want to do that. I've even taken out a funeral plan to pay for it.
Sorry this is grim and a bit morbid, but the moral of the story is that TS can kill you very suddenly and without warning, and you need to be prepared. In the final moments of your life it really is comforting to know that you have all your 'shit' in order.
I really hope that you are cured of TS way before it reaches that stage. But as the brownies used to say 'be prepared'.... or was that the scouts? Lol, all I can think about know is 'hoot hoot hoot', and dib dib dob!!!!
Speak soon XXX
I don't mean to be morbid, but I wondered how many of you are aware of the risks of TS. Do you realise, for example, that it may eventually be deemed incurable, once you've tried all the drugs, physio, surgery and grafts and transplants that are available to you, bio engineered or otherwise? So what happens next?
In my case, it happened gradually. I had several years where, although my health was bad, I was basiacally able to work. I just had long periods of coughing and spluttering, and many, many weeks in and out of hospital having suirgery, and IV antibiotics. I could live what was a basically normal life, with just a few restrictions.
Then I became too ill to work. I tried to work, but people kept complaining that I was too slow, too tired, I looked half asleep, I needed to go quicker, I was disgusting and should be kept in a box! I was exhausted and in a lot of pain. But so long as I had a lot of rest, I could get involved with voluntary work, and I managed to do some good for Chester society.
And then I became dependent on the nebuliser. I developed a problem whereby my lungs had become so damaged that I produced thick and very sticky mucus. This problem, brionchiectasis, combined with a very narrow airway with a stent in situ), meant that I experienced in excess of 20 near fatal blockages every year, for five years in a row.
I then discovered mucodyne, which was a miracle drug for me. But the mucus had done a lot of damage to my lungs, and it just hurt to breathe so much. I tried to go back to work, but I was easily tired, breathless, I had toi drink non stop, which led to more bathroom breaks than average lol, and on more than one occasion I had to leave instantly to get to hospital to be medicated for almost total blockages resulting from mucus plugs. It was a constant struggle and I had to take days off work not for the sake of my health, but for the sake of my life. My employers in some cases were less than understanding. Many of them openly accused me of faking, or of overexaggerating what was wrong with me. And to top it all, I had at the time what was undiagnosed, and therefore unmedicated bipolar disorder type 1, which made me either so depressed and almost catatonic that i was almost impossible to communicate with, or so overexcited that some people told me it made their head hurt to be subjected to the constant rush of ideas that was going through my mind. I was in a very difficult situation and I couldn't win.
And then my airway deteriorated to the point where it was classed as untreatable with currently available technology. ANd I was unable to work, which was a blow because I really wanted to. They told me quite bluntly at one of my appointment two years ago that my TS was most likely going to be terminal. And I smiled, and said thank you. Then I went home and made dinner for my husband, and asked him about his day. It took weeks to sink in.
Which leads me to my question of today. Have you ever made plans and preparations for what you would like to happen after you die? Even if the TS can be cured or controlled, and is not the cause of your death, you should really leave instructions for your family in the event of your death; it would save them from having to deal with that stuff at a time when all they want to do is cry. And they might find it coforting to know that you thought enough of them to take that worry away from them.
I have made it clear to everybody that my ideal death, if the pain and lack of available air to breathe become too much, that I wouyld like to go to an assissted suicide clinic in switzerland. It's not for everybody, and I'm not promoting this or even advocating it. It's just something I feel may be right for me.
I have also planned for what may happen if I cannot complete the process required for my first choie. I would like to be cremated. The idea of being buried ina box makes my skin creep. It's frightening. I would like my ashes to be scattered over London, the City where I have lived most of my life, the place I was born and bred. I don't want a big do at my cremation. It would be nice if they could find a way of playing my fabvourite tunes from my ipode for the hours before I am crispy fried, lol. And then just as the gates to the chamber open, maybe they could play 'thought I'd died and gone to heaven'. hehe, my idea of an apt song.
And then maybe everyone could have a drink and say cheers to me. And then they can leave me be. I will be fitted for my angel wings and hello, and learning how to fly up to the pearly gates. Can't wait!
Ultimately, I think that if I have made plans for my final destination, it will ease the stress a little for my husband. And I love him enough to want to do that. I've even taken out a funeral plan to pay for it.
Sorry this is grim and a bit morbid, but the moral of the story is that TS can kill you very suddenly and without warning, and you need to be prepared. In the final moments of your life it really is comforting to know that you have all your 'shit' in order.
I really hope that you are cured of TS way before it reaches that stage. But as the brownies used to say 'be prepared'.... or was that the scouts? Lol, all I can think about know is 'hoot hoot hoot', and dib dib dob!!!!
Speak soon XXX
Wake me when it's over...
I woke up this mroning feeling as if I had a bad dream. It took me only a few moments of prodding and poking to realise that I was wrong, and what |I thought to be a dream was, in fact, reality. I spent most of the day pretty much doing what little kids do when they think a monster is chasing them. I lay in my nice memory foam, feather adorned bed, and I hid under the covers. I even plugged my ipod in, so I couldn't allow anything to intrude into my head if I din't wish it to. The difference between the five year old me and the thirty two year old me, is that the monster I am hiding from may be very real. I really hope and pray with everything in my soul that it isn't anything to worry about. But the fact remains it could be. I'm scared. And I'm in pain. I didn't realise that the oxycodone that I take for my spinal condition has been masking the pain that I have on the left side of my chest. And I know eveyrone hates to talk about discharges from body parts, but be aware (if you're not) that a discharge is a symptoms of breast cancer, and you should get it checked out if you develop an abnormal leak. I've been in denial for a lot longer than any sane person would like to admit. And it's because I have an irrational fear of being touched by other people. I hate it, and it's one of the few things in life that will send me into major meltdown. I only managed to make it through my breast exam the other day because I was loaded on benzos. I don't advocate that, it's just what I have been prescribed to help me stop getting too worked up generally. I don't know how I'm going to cope with doctors that I have never met touching me.
And of course, I have this thought in the back of my mind that it really could be cancer. It feels like my body has been trying to tell me something was wrong for a while, and I did nothing whatsoever about it. I took the motto 'keep calm and carry on' to the ultimate extreme.
I am so stupid. While I'm at it, I should maybe admit that I have never had a smear test. I know it seems reckless, but I was attacked a few times in close succession between the ages of 16 and 22, and it's made me really quick to panic when people do things to me that I don't feel in control of down there. Luckily, my husband doesn't mind being bossed about!!
My breathing is deteriorating rapidly, and I am really sure that it is the stress of what's going on at the moment. I don't know if the pain in my chest is caused by my breathing issues, or by a tumour in my breast. And I don't know if I even want to find out. I'm feeling very confused today, and as a result of my introverted lifestyloe (which was a result of my mental illness), I don't have many people I can talk to about this. I have a lovely friend who I've known since I was 13 or so. She has supported me through every high and low point in my life, and she's the kind of person who would give you the last money in her purse. I know this because she did.
And there's lovely D. I met her at college where I was doing my degree. I coached her through a few modules she was struggling with, she went on to write fabulous assignments, passed with great marks, and now is the most incredibly sweet and supportive friend I could hope for. If there's ever a crisis in life, she always meets me for cheesecake and hot chocolate. Not healthy at all, but it does help. Or maybe it's having a good natter that helps. Other than those two, I have noone to talk to. SO please forgive me waffling on. I will shut up in a few weeks when I hopefully will find out there's nothing to fret over.
I will have to do my ninth nebuliser of the day soon. I think that it's time for a stent change, so I will ask my consultant on Monday when he can fit me in. I try not to panic about my airway unless I have to. The trouble is, I look too calm. The last time I had a respiratory arrest, the nurses thought I was jokling when I asked for help because I wasn't flapping about. So they told me to lay on my bed and go to sleep!! Luckily an astute student realised that me extremities were turning blue, and raised the alarm. I remember looking clearly into the eyes of some of the nurses I have known for a very long time, and what I saw in their eyes was fear. And then I realised I was in trouble. So my advice is, if you're ever in the same situation, pick up the heaviest thing you can find and throw it at the wall, the floor, wherever. Bang on the bed repeatedly (or rather, the bed frame) with something metal, until they look at you. Throw your water jug/coffee mug at the wall. Do whatever you need to to attract their attention to get help and stay alive. You can apologise for broken mugs and noise damage later. Being polite isn't worth dying for.
So my song choice for tonight is QPD by Population 1, and Staying Alive by the Bee Gees.
And of course, I have this thought in the back of my mind that it really could be cancer. It feels like my body has been trying to tell me something was wrong for a while, and I did nothing whatsoever about it. I took the motto 'keep calm and carry on' to the ultimate extreme.
I am so stupid. While I'm at it, I should maybe admit that I have never had a smear test. I know it seems reckless, but I was attacked a few times in close succession between the ages of 16 and 22, and it's made me really quick to panic when people do things to me that I don't feel in control of down there. Luckily, my husband doesn't mind being bossed about!!
My breathing is deteriorating rapidly, and I am really sure that it is the stress of what's going on at the moment. I don't know if the pain in my chest is caused by my breathing issues, or by a tumour in my breast. And I don't know if I even want to find out. I'm feeling very confused today, and as a result of my introverted lifestyloe (which was a result of my mental illness), I don't have many people I can talk to about this. I have a lovely friend who I've known since I was 13 or so. She has supported me through every high and low point in my life, and she's the kind of person who would give you the last money in her purse. I know this because she did.
And there's lovely D. I met her at college where I was doing my degree. I coached her through a few modules she was struggling with, she went on to write fabulous assignments, passed with great marks, and now is the most incredibly sweet and supportive friend I could hope for. If there's ever a crisis in life, she always meets me for cheesecake and hot chocolate. Not healthy at all, but it does help. Or maybe it's having a good natter that helps. Other than those two, I have noone to talk to. SO please forgive me waffling on. I will shut up in a few weeks when I hopefully will find out there's nothing to fret over.
I will have to do my ninth nebuliser of the day soon. I think that it's time for a stent change, so I will ask my consultant on Monday when he can fit me in. I try not to panic about my airway unless I have to. The trouble is, I look too calm. The last time I had a respiratory arrest, the nurses thought I was jokling when I asked for help because I wasn't flapping about. So they told me to lay on my bed and go to sleep!! Luckily an astute student realised that me extremities were turning blue, and raised the alarm. I remember looking clearly into the eyes of some of the nurses I have known for a very long time, and what I saw in their eyes was fear. And then I realised I was in trouble. So my advice is, if you're ever in the same situation, pick up the heaviest thing you can find and throw it at the wall, the floor, wherever. Bang on the bed repeatedly (or rather, the bed frame) with something metal, until they look at you. Throw your water jug/coffee mug at the wall. Do whatever you need to to attract their attention to get help and stay alive. You can apologise for broken mugs and noise damage later. Being polite isn't worth dying for.
So my song choice for tonight is QPD by Population 1, and Staying Alive by the Bee Gees.
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