Tuesday, 20 July 2010

Drugs, drugs and drugs

I finally managed to start Omalizumab last week!! 2 painful injections, but hey, nothing compared to ABG's (I kept reminding myself!). I had no dramatic side effects so was able to go home 5 hours later. I did have a headache, but was suffering with headaches a lot that week. Since I've had a very sore throat, and yesterday knee and back pain started. Random I know. I was warned that knee pain in common... I don't know if any of the post injection 'side effects' are actually side effects though, I'll wait until I've had a few more injections and see if they continue to occur...

Today is my first day off steroids :-) My peak flows aren't doing TOO badly. I know from past experiences that this is unlikely to last long, the longest I usually manage off steroids is about a week, but it's important for me to keep trying to manage without them.

Just read this "Asthma stat of the week: On average, three people per day or one person every seven hours dies from asthma." Scary :-(

Sunday, 11 July 2010


Life feels hard right now.

My mood is in a downward spiral. I'm trying to stop it, I really am.

I had a full on bulimia relapse the week before last. 'Blips' are normal, recovery is a long process and I can accept blips. But I can't call a week long episode a blip, I can't kid myself that it was something that innocent, it was a relapse, and that makes me sad.
I broke the cycle though before it took complete control. That's something at least.

I feel so alone. I have no one to talk to about how I feel. I promised myself that I wouldn't allow myself to get into this position again, where I felt alone with these feelings, but here I am, with no one to turn to.
I've got friends that in theory I could talk to, I have my GP, I'm still technically under the mental health services (for severe depression) so I could contact someone, but I don't feel able to talk to anyone.

I had a meeting in the week with my respiratory nurse and occupational health, where a plan was devised which will (hopefully!) enable me to return to work. It felt like an exercise in making me feel stupid.
After the meeting I stayed to chat to my nurse, she is lovely and I spoke about some of the above stuff, but.... well she has better things to do than listen to me whine. Don't get me wrong, she listened and was supportive, but I took up enough of her time as it was.


Anyway, it will pass. I'm sure it will. I'm struggling with being off work for so long, I don't do well when I don't have routine or structure to my life.
ok, enough with the negativity, positives.......

My lungs are being relatively well behaved. I'm reducing my steroids down nicely, using my salbutamol inhaler less than 20 puffs (complete guestimate lol) a day which is good for me!

All being well, I should be starting Omalizumab this week!! I'm being admitted to respiratory ward for the day which isn't normal procedure. My consultant thinks it's for the best as it's my first dose and considering my tendancy to get very poorly very quickly. I don't mind; I'll take a book, a sandwich and diet coke and hopefully be able to sit quietly for the day :)

The plan to enable me to get back to work has been devised. It now needs to be agreed by a few people, but unfortunately this time of year people are on holiday. I think it's realistic to say that I should be back to work sometime in August :)

(See Dawn, stop being so miserable, things aren't as bad as they seem.)

Friday, 2 July 2010

Maybe, just maybe....

The decision to increase Prednisolone was the right decision, I'm weaning down, currently on 30mg. Still too high for my liking but I can breathe, sleep, leave my flat.... it's all good!! This time round though I seem to be getting more side effects than I'm used to. The blurred vision is standard for me, as is the increased appetite, but this time I also have awful insomnia and water retention. I hate hate hate steroids, and hate even more that I have to take them as they're the only thing that bloody works :-(

Because of the steroids I've been able to get out and about and do things! Yay!

I visited Bath thermae spa this week. I was very dubious about it, I can't swim and have water 'issues' but it was so lovely and relaxing. It's also inspired me to learn to swim. Being in the water wasn't as terrifying as I thought it would be, and I would have been so much more confident/happier if I'd been able to swim! I've looked into adult swimming lessons, now I just have to book myself onto them.... Maybe once I've done the lessons I can go back to the spa and treat myself to a treatment (I like the idea of hot stone massage therapy) as a reward :-)

Also, I've been able to walk around shops without the usual breathlessness and wheezing which funnily enough, makes me not want to go shopping! Hence, I have some nice new summer clothes :-)
Today I went to Clarks Village, which is a discount/outlet little shopping centre. I treated myself :-D I was actually very restrained, I could have spent double what I did!!

Other good news, I had a phone call today about a meeting which will get me closer to going back to work! That's next week, so, with any luck, I could be back at work within the next few weeks! I shouldn't get my hopes up though based on past experiences.
I need to go back to work; I seem to be spending far too much money, and being at home on my own is not good for me.

Oh, and finally I have another appointment through to attempt starting Xolair again.

Maybe, just maybe, things are on the up....