Saturday, 27 November 2010


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!

Thursday, 11 November 2010


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....

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!