I've been feeling a bit down recently hence my lack of posts, I don't want to turn this blog into a place where I only moan and whinge.
In a nutshell; stupid lungs still aren't happy. My joints are incredibly painful, worse in my back and knees (thanks Omalizumab). I'm still not back at work, my manager is giving me vague answers when I ask what is going on, last week I saw my job advertised. Blah blah blah.
******
Christmas is coming, yay! I've finished making my christmas cards and finished my christmas shopping. Every year I do my christmas shopping in November and this year I vowed to wait until December so I could enjoy the atmosphere to present shopping near Christmas. However, it would appear that I just can't help myself, I love buying Christmas presents, and I suppose if I'm honest, I hate hugely crowded shops in December time!
Christmas tree has gone up! I know some people think it's stupidly early but Christmas is my favourite time of year, maybe it's a family thing as my parents and cousin have also put their trees up today :-) I also use the 'excuse' that tomorrow is the first Sunday of Advent.
I'm very much looking forward to visiting various christmas markets over the next few weeks :-D
I'm so incredibly jealous of all the people who've had snow! I remember when I used to live in Birmingham we got so much more snow than I see living down here in the South West, also the snow is never as deep down here. Snow is very pretty to look at but I hate it when it turns to mush and ice, and driving in it is horrendous. It's certainly been cold enough for snow though, I cleverly didn't take a scarf out with me earlier, my stupid lungs aren't a fan of bitterly cold weather!
Saturday, 27 November 2010
Thursday, 11 November 2010
Strange.....
I have something strange going on, it's slightly concerning and I'm not entirely sure what to do about it.
I have my own pulse oximeter (measures pulse and oxygen saturations) at home. I used to know someone who 'acquired' certain things during her hospital stays, when she 'aquired' herself a new pulse oximeter she gave me her old one. The main reason I use it is to assure myself that it's not "all in my head" (which is an entirely different blog post to write another day!), that when I'm feeling exhausted and breathless and my oxygen saturations are x%, the way I feel is justified! I also use it as a guide as to when to call an ambulance. Well, that is the theory, I've got an awful habit of watching the numbers drop and waiting for them to go back up, then when they go back up I know I'll be okay in a few hours so I don't bother going to hospital.
Anyway, back to the point, night times have once again become a big problem for my lungs. I wake up numerous times feeling wheezy, tight chested, awful headache, very breathless. About a week ago I popped the pulse oximeter on during one of these nightly wakenings to find my oxygen saturations were 86%. Since then, every night they've slowly go lower, last night my sats were 80% at one point! During the day the pulse oximeter measures my sats to be (most of the time) > 95%. Today I was in the hospital and I checked my pulse oximeter reading against the hospitals reading, which confirmed that my probe is working fine. I also manually check my pulse during the night to see whether that correlates with the reading, which is does. Therefore, I am completely satisfied that my pulse oximeter is working correctly. I reposition the probe on different fingers, swap hands, make sure my fingers are warm and the result is the same.
Even though when I wake up I don't feel great (asthma), I don't feel AS bad as I should to have such low sats.
The obvious 'diagnosis' would be sleep apnea but I'm awake whilst my sats are that low. The pattern has been - I wake up having a huge coughing fit, get in control of my breathing, use my inhaler (I'm not allowed a home neb) and put the probe on. Eventually my sats will start to improve, but the highest I've seen them during the night is 88%.
I have no idea what to do about this. I could speak to my respiratory team but it sounds too weird, I'm concerned they're not going to believe me, but at the same time I'm fully aware that this isn't good....
I have my own pulse oximeter (measures pulse and oxygen saturations) at home. I used to know someone who 'acquired' certain things during her hospital stays, when she 'aquired' herself a new pulse oximeter she gave me her old one. The main reason I use it is to assure myself that it's not "all in my head" (which is an entirely different blog post to write another day!), that when I'm feeling exhausted and breathless and my oxygen saturations are x%, the way I feel is justified! I also use it as a guide as to when to call an ambulance. Well, that is the theory, I've got an awful habit of watching the numbers drop and waiting for them to go back up, then when they go back up I know I'll be okay in a few hours so I don't bother going to hospital.
Anyway, back to the point, night times have once again become a big problem for my lungs. I wake up numerous times feeling wheezy, tight chested, awful headache, very breathless. About a week ago I popped the pulse oximeter on during one of these nightly wakenings to find my oxygen saturations were 86%. Since then, every night they've slowly go lower, last night my sats were 80% at one point! During the day the pulse oximeter measures my sats to be (most of the time) > 95%. Today I was in the hospital and I checked my pulse oximeter reading against the hospitals reading, which confirmed that my probe is working fine. I also manually check my pulse during the night to see whether that correlates with the reading, which is does. Therefore, I am completely satisfied that my pulse oximeter is working correctly. I reposition the probe on different fingers, swap hands, make sure my fingers are warm and the result is the same.
Even though when I wake up I don't feel great (asthma), I don't feel AS bad as I should to have such low sats.
The obvious 'diagnosis' would be sleep apnea but I'm awake whilst my sats are that low. The pattern has been - I wake up having a huge coughing fit, get in control of my breathing, use my inhaler (I'm not allowed a home neb) and put the probe on. Eventually my sats will start to improve, but the highest I've seen them during the night is 88%.
I have no idea what to do about this. I could speak to my respiratory team but it sounds too weird, I'm concerned they're not going to believe me, but at the same time I'm fully aware that this isn't good....
Thursday, 4 November 2010
It's been a while
I've felt that I haven't had anything worthwhile to write for while hence the lack of posts last month. Time for an update!
I've started training with The Samaritans. The selection process was much harder than I imagined and I was genuinely surprised to get the phone call telling me that I was accepted. Now I have weekly training sessions until December. I've had 3 sessions so far, they're quite heavy and intense but I suppose that is to be expected when you consider the types of calls that The Samaritans receive. I'm not a fan of speaking up in groups so that doesn't exactly make for a fun 3 hour training session anyway! It's all good though, I'm looking forward to completing the training and moving onto the next stage :-)
My Xolair trial is going.... well.... I have very mixed feelings! I've had 3 doses but only 2 are being counted as there was such a gap between injections number 1 and 2. I'm noticing side effects that aren't pleasant. The worst is ulcers on my tonsils for about a week after the injection, I'm sure you can imagine how painful that is! I've had daily cold-like symptoms for about 6 weeks now which is making me feel horrible. The joint pain is variable, some days even the joints in my fingers hurt and other days I don't notice it at all. I've also noticed that when I get migraines, they don't respond to my migraine medication. The migraines themselves aren't new, I often get a migraine or two a month, but they used to respond really well to medication so they didn't used to have a big impact on my life. Now, they're lasting days and I'm having to spend long periods in bed. If you've ever had a migraine, I'm sure you'll appreciate that you try to lie down in the dark, in the quiet and stay still. Having a migraine and wheezing, sneezing, coughing etc is not fun!!
Buuuut, my asthma is defintely better than it was. It's not as brittle, I'm on much lower doses of Pred and it's been a while since my last hospital admission. Another buuuuuut, peak flows have taken a nose dive over the past 2 weeks and symptoms are on the increase. I should be having the next dose next week, watch this space.......
I'm still not back at work. The drama surrounding my nursing career is no further resolved. I've given up on that making any progress this year which makes me so sad, it took me 3 years of hard work to train and now I've been out of the profession for almost 3 years :-(
My 'temporary' admin job (temporary until the nursing situation is resolved) are ignoring my emails. I admit, I could be pushing the issue a lot harder than I have been, but I think it's their job to tell me that I'm allowed back (and have been since August) considering they're the ones who stopped me from working in the first place when I 'traumatised' my colleagues by having an life threatening asthma attack/collapse infront of them. I don't like the way they've treated me, I don't want to really go back there, so if they're willing to keep on paying me to stay home then I'm going to take advantage of it. Haha I know I'm going to have to bite the bullet at some point though and do something about the situation. I've fought long and hard to not have to give up working due to ill health, and these long periods where I'm not working over the past 3 years are not helping my fight!
I've started training with The Samaritans. The selection process was much harder than I imagined and I was genuinely surprised to get the phone call telling me that I was accepted. Now I have weekly training sessions until December. I've had 3 sessions so far, they're quite heavy and intense but I suppose that is to be expected when you consider the types of calls that The Samaritans receive. I'm not a fan of speaking up in groups so that doesn't exactly make for a fun 3 hour training session anyway! It's all good though, I'm looking forward to completing the training and moving onto the next stage :-)
My Xolair trial is going.... well.... I have very mixed feelings! I've had 3 doses but only 2 are being counted as there was such a gap between injections number 1 and 2. I'm noticing side effects that aren't pleasant. The worst is ulcers on my tonsils for about a week after the injection, I'm sure you can imagine how painful that is! I've had daily cold-like symptoms for about 6 weeks now which is making me feel horrible. The joint pain is variable, some days even the joints in my fingers hurt and other days I don't notice it at all. I've also noticed that when I get migraines, they don't respond to my migraine medication. The migraines themselves aren't new, I often get a migraine or two a month, but they used to respond really well to medication so they didn't used to have a big impact on my life. Now, they're lasting days and I'm having to spend long periods in bed. If you've ever had a migraine, I'm sure you'll appreciate that you try to lie down in the dark, in the quiet and stay still. Having a migraine and wheezing, sneezing, coughing etc is not fun!!
Buuuut, my asthma is defintely better than it was. It's not as brittle, I'm on much lower doses of Pred and it's been a while since my last hospital admission. Another buuuuuut, peak flows have taken a nose dive over the past 2 weeks and symptoms are on the increase. I should be having the next dose next week, watch this space.......
I'm still not back at work. The drama surrounding my nursing career is no further resolved. I've given up on that making any progress this year which makes me so sad, it took me 3 years of hard work to train and now I've been out of the profession for almost 3 years :-(
My 'temporary' admin job (temporary until the nursing situation is resolved) are ignoring my emails. I admit, I could be pushing the issue a lot harder than I have been, but I think it's their job to tell me that I'm allowed back (and have been since August) considering they're the ones who stopped me from working in the first place when I 'traumatised' my colleagues by having an life threatening asthma attack/collapse infront of them. I don't like the way they've treated me, I don't want to really go back there, so if they're willing to keep on paying me to stay home then I'm going to take advantage of it. Haha I know I'm going to have to bite the bullet at some point though and do something about the situation. I've fought long and hard to not have to give up working due to ill health, and these long periods where I'm not working over the past 3 years are not helping my fight!
Monday, 27 September 2010
I have 2 arms!!!
The plaster cast came off today, yay!! I'm surprised at how swollen and painful my wrist is. I've got a good range of movement though, even the Dr in the fracture clinic was surprised at how good, so I'm hoping that'll make for a quick recovery - pain and swelling free!
I drove a little bit this evening which made me wrist quite painful initially when changing gears, and it was definitely more swollen afterwards, but I've got no plans to use public transport now I don't have to so I'm sure my wrist will adapt to driving again quickly!
I seem to have got the beginnings of the lovely cold that everyone seems to be moaning about. I've got a sore throat and looking very pale (which was commented on at the hospital this morning - it's one of my 'warning signs', I often go very pale before having a big asthma attack). Bloody great timing considering I'm trying to wean down the Pred right now! It hasn't really effected my chest so far, I have used my salbutamol slightly more than normal but nothing drastic, so I'm knocking back Vitamin C, Zinc and Echinnacea tablets in the hope I can get rid of it before it develops into something worse and makes breathing fun.
I drove a little bit this evening which made me wrist quite painful initially when changing gears, and it was definitely more swollen afterwards, but I've got no plans to use public transport now I don't have to so I'm sure my wrist will adapt to driving again quickly!
I seem to have got the beginnings of the lovely cold that everyone seems to be moaning about. I've got a sore throat and looking very pale (which was commented on at the hospital this morning - it's one of my 'warning signs', I often go very pale before having a big asthma attack). Bloody great timing considering I'm trying to wean down the Pred right now! It hasn't really effected my chest so far, I have used my salbutamol slightly more than normal but nothing drastic, so I'm knocking back Vitamin C, Zinc and Echinnacea tablets in the hope I can get rid of it before it develops into something worse and makes breathing fun.
Saturday, 25 September 2010
I want my arm back!!
I still have a plaster cast on my left arm and it's driving me mad! I have a review at the fracture clinic on Monday, I'm hoping it'll come off... I sat in my car to assess whether I could drive, I decided against it and playing around with the gear stick caused some pain. Over the past few days I've noticed pain occuring when it didn't earlier on in the week. I'm hoping that it's because the swelling has gone down rather than I'm going to need the cast on for longer.
I finally had my second dose of Omalizumab last week! So now I'm trying to decrease my steroids, yet again. I feel that I'm continually trying to reduce Pred. My aim isn't to come off them for once though, I'll go down to 10mg and see what happens, then maybe down to 5mg and stay there until I next see my consultant in a month (as per his recommendation). I start to notice not being on them once I drop below 20mg so that maybe too ambitious but we'll see what happens.
My life has been really boring with this cast on, more so than normal. Due to not being able to drive I haven't been able to get out and meet up with friends. Granted, they could have come to my flat or I could have met them during the day at the weekends (buses and trains don't get me home on weekday evenings) but clearly they had better things to do than go out of their way to meet up. Yeah, I'm feeling pretty bitter right now over the lack of good, supportive, reliable friends I have!
I had an assessment to assess whether I can return to being a nurse a few days ago. It wasn't much fun, and I'm waiting to hear when the second part of the assessment will be. Almost 3 years this has dragged on for, and I seriously cannot wait for it to be over and a decision is finally made! I had hoped it would be resolved this year, but I've said that every year, and now I've reluctantly come to accept that it's likely to be resolved next year, but I'm slowly getting there.
Another reason I can't wait for this cast to be off is so I can make a start on my Christmas cards! I went to a craft show yesterday and bought a few bits. I thought the show wasn't as good as previous years and I didn't spend anywhere near as much as I thought I would, so I have a small shopping list of things I need to get, then I can make some cards! :-) I LOVE christmas, the shops are already selling christmas chocolates and decorations. It's pretty early, but oh, I just realised - it's only 3 months away!
I finally had my second dose of Omalizumab last week! So now I'm trying to decrease my steroids, yet again. I feel that I'm continually trying to reduce Pred. My aim isn't to come off them for once though, I'll go down to 10mg and see what happens, then maybe down to 5mg and stay there until I next see my consultant in a month (as per his recommendation). I start to notice not being on them once I drop below 20mg so that maybe too ambitious but we'll see what happens.
My life has been really boring with this cast on, more so than normal. Due to not being able to drive I haven't been able to get out and meet up with friends. Granted, they could have come to my flat or I could have met them during the day at the weekends (buses and trains don't get me home on weekday evenings) but clearly they had better things to do than go out of their way to meet up. Yeah, I'm feeling pretty bitter right now over the lack of good, supportive, reliable friends I have!
I had an assessment to assess whether I can return to being a nurse a few days ago. It wasn't much fun, and I'm waiting to hear when the second part of the assessment will be. Almost 3 years this has dragged on for, and I seriously cannot wait for it to be over and a decision is finally made! I had hoped it would be resolved this year, but I've said that every year, and now I've reluctantly come to accept that it's likely to be resolved next year, but I'm slowly getting there.
Another reason I can't wait for this cast to be off is so I can make a start on my Christmas cards! I went to a craft show yesterday and bought a few bits. I thought the show wasn't as good as previous years and I didn't spend anywhere near as much as I thought I would, so I have a small shopping list of things I need to get, then I can make some cards! :-) I LOVE christmas, the shops are already selling christmas chocolates and decorations. It's pretty early, but oh, I just realised - it's only 3 months away!
Wednesday, 8 September 2010
Ahhh independence, how I miss you!
Hmmm it seems like so long ago since I last wrote here! To pick up from where I left off....
I had a respiratory outpatient appointment to assess whether I was well enough for the second dose of Omalizumab. I was, and was told to return the next day for the injection. All day I felt poorly, spent the night being sick and retching, which in turn made me feel wheezy and generally rubbish so I didn't end up having the Omalizumab :-(
After this, I decided that I needed to whack my Pred up to 60mg as I was off to Manchester to stay with a friend and didn't want to end up having an asthma attack up there! Pred took a few days to kick it but finally did. First night in Manchester I went ice skating, fell over and ended up spending a few hours in A&E to be told I'd suffered a broken Scaphoid (small bone in hand, very commonly broken during a fall), and had my first ever plaster cast!
Saw my favourite band whilst in Manchester - Muse!! I <3 Muse, they're absolutely amazing live.
Had a lovely time whilst in Manchester, but to be honest, I was very glad to get back home for a few reasons.
By the time I got home my poor hand was really starting to hurt, so the day after I took myself off to the local MIU to get it looked at and try to arrange an appointment at the fracture clinic. Turns out that not only did I break my scaphoid, I also chipped a bone in my wrist and broke my radius (big bone in wrist). The hospital in Manchester had put a full cast on which hadn't allowed for the wrist swelling hence the increasing pain!
Ughhhhh, I'm so over public transport already. I hate hate hate not being able to drive, struggling to do pretty much everything, not being as independent :-( Ah well, it could be worse. It was my left hand and I'm right handed....
Monday I had a phone call from my respiratory consultant's secretary asking me to go in and see him today. I went in fully expecting to be moaned at over the Omalizumab situation and be told that I couldn't have it again. I didn't get moaned at (lol) but I was told that the Omalizumab isn't going to work if I'm not 'well enough' to have the injections, which is perfectly understandable. So the plan is, I have the injection next week (if well enough!), then I think if we can't get into a routine with it then that will be the end of that :-(
I've never believed all the hype that it's a wonder drug so I'm not THAT upset, but I have been pinning quite a few hopes on this drug - that it would make even a small difference. The next step would be to try drugs like Methotrexate, and I'm really not keen on that idea.
My consultant is also going to arrange for me to have a DEXA scan in view of my poor wrist. I had one about 5 years ago which showed my bone density was below what it should be, and I was put on preventative medication to stop it from getting any worse. Hopefully I just landed badly and the pretty much continuous steroids haven't caused me any more problems :-(
And that is that. I'm pretty fed up in general but that's purely because of my wrist - I hate struggling to do simple things and not being able to just get in my car whenever I like. I live in a rural area, the only thing within walking distance is a farm shop and buses are less than hourly. Beats where I used to live where buses were weekly I guess!!!!!!!
I had a respiratory outpatient appointment to assess whether I was well enough for the second dose of Omalizumab. I was, and was told to return the next day for the injection. All day I felt poorly, spent the night being sick and retching, which in turn made me feel wheezy and generally rubbish so I didn't end up having the Omalizumab :-(
After this, I decided that I needed to whack my Pred up to 60mg as I was off to Manchester to stay with a friend and didn't want to end up having an asthma attack up there! Pred took a few days to kick it but finally did. First night in Manchester I went ice skating, fell over and ended up spending a few hours in A&E to be told I'd suffered a broken Scaphoid (small bone in hand, very commonly broken during a fall), and had my first ever plaster cast!
Saw my favourite band whilst in Manchester - Muse!! I <3 Muse, they're absolutely amazing live.
Had a lovely time whilst in Manchester, but to be honest, I was very glad to get back home for a few reasons.
By the time I got home my poor hand was really starting to hurt, so the day after I took myself off to the local MIU to get it looked at and try to arrange an appointment at the fracture clinic. Turns out that not only did I break my scaphoid, I also chipped a bone in my wrist and broke my radius (big bone in wrist). The hospital in Manchester had put a full cast on which hadn't allowed for the wrist swelling hence the increasing pain!
Ughhhhh, I'm so over public transport already. I hate hate hate not being able to drive, struggling to do pretty much everything, not being as independent :-( Ah well, it could be worse. It was my left hand and I'm right handed....
Monday I had a phone call from my respiratory consultant's secretary asking me to go in and see him today. I went in fully expecting to be moaned at over the Omalizumab situation and be told that I couldn't have it again. I didn't get moaned at (lol) but I was told that the Omalizumab isn't going to work if I'm not 'well enough' to have the injections, which is perfectly understandable. So the plan is, I have the injection next week (if well enough!), then I think if we can't get into a routine with it then that will be the end of that :-(
I've never believed all the hype that it's a wonder drug so I'm not THAT upset, but I have been pinning quite a few hopes on this drug - that it would make even a small difference. The next step would be to try drugs like Methotrexate, and I'm really not keen on that idea.
My consultant is also going to arrange for me to have a DEXA scan in view of my poor wrist. I had one about 5 years ago which showed my bone density was below what it should be, and I was put on preventative medication to stop it from getting any worse. Hopefully I just landed badly and the pretty much continuous steroids haven't caused me any more problems :-(
And that is that. I'm pretty fed up in general but that's purely because of my wrist - I hate struggling to do simple things and not being able to just get in my car whenever I like. I live in a rural area, the only thing within walking distance is a farm shop and buses are less than hourly. Beats where I used to live where buses were weekly I guess!!!!!!!
Tuesday, 24 August 2010
The good and the bad
So the good; I got back in contact with a few friends last week, people I've unintentionally lost contact with over the past however many months. It was really lovely to have a catch up, I'm so bad at keeping in contact with people. I don't mean to fall out of touch with people, it just happens, and then before I know it it's been months since we last spoke! It was amazing to notice how much an hours conversation lifted my mood!! I need to make more of an effort to keep in contact with my friends that I don't see very often.
Another good; I've remained well enough to stay out of hospital another week. I feel like I'm only delaying the inevitable, but we'll see....
The bad... after a lot of thought, I've come to the conclusion that working makes my asthma deteriorate so much faster than when I'm not working :-( I know full well if I'd have been working right now then I'd have ended up in hospital. I don't get to sleep until after 2am, then routinely wake up during the night/early hours thanks to my stupid lungs. My best hours for sleep are roughly 8am til midday. If I was working then I'd have to be up for work before then, and multiple nights bad sleep combined with unhappy lungs often lands me in hospital - I think I get tired much more quickly, making me very poorly once my stupid lungs start to play up. This realisation makes me sad and quite worried, I hope the day doesn't come where I'm unable to work (let's ignore the fact that for the past 4 years I've been off sick more than I've actually worked!!).
Talking of work (yep work is bad for now), I should be back to work already. I was given the all clear to return to work at the end of July. A letter was sent to my manager, I was waiting for her to contact me. She hasn't and I don't think she is planning to! First of all I was patiently waiting, then impatiently waiting, then being stubborn so not contacting them, now I don't want to go back so I'm not contacting them! However, I know this can't last, so I'll have to give them a call sometime soon. Hmmm I could write quite a bit about the way I'm being treated by my manager and colleagues, but I don't want to ruin my mood so that can wait for another day.
I've got an outpatient appointment tomorrow, another assessment to see if I'm 'well enough' for the 2nd dose of Omalizumab. I don't feel any different to last week, my peak flow diary hasn't changed so I'm going to be interested to see what is said/suggested.
Another good; I've remained well enough to stay out of hospital another week. I feel like I'm only delaying the inevitable, but we'll see....
The bad... after a lot of thought, I've come to the conclusion that working makes my asthma deteriorate so much faster than when I'm not working :-( I know full well if I'd have been working right now then I'd have ended up in hospital. I don't get to sleep until after 2am, then routinely wake up during the night/early hours thanks to my stupid lungs. My best hours for sleep are roughly 8am til midday. If I was working then I'd have to be up for work before then, and multiple nights bad sleep combined with unhappy lungs often lands me in hospital - I think I get tired much more quickly, making me very poorly once my stupid lungs start to play up. This realisation makes me sad and quite worried, I hope the day doesn't come where I'm unable to work (let's ignore the fact that for the past 4 years I've been off sick more than I've actually worked!!).
Talking of work (yep work is bad for now), I should be back to work already. I was given the all clear to return to work at the end of July. A letter was sent to my manager, I was waiting for her to contact me. She hasn't and I don't think she is planning to! First of all I was patiently waiting, then impatiently waiting, then being stubborn so not contacting them, now I don't want to go back so I'm not contacting them! However, I know this can't last, so I'll have to give them a call sometime soon. Hmmm I could write quite a bit about the way I'm being treated by my manager and colleagues, but I don't want to ruin my mood so that can wait for another day.
I've got an outpatient appointment tomorrow, another assessment to see if I'm 'well enough' for the 2nd dose of Omalizumab. I don't feel any different to last week, my peak flow diary hasn't changed so I'm going to be interested to see what is said/suggested.
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