A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday 3 September 2008

Uncertainty

My lungs are still tight and bagpipey and last night was quite a struggle, which made sleeping difficult and it didn't happen until sometime around 5am. I was tired, but my lungs just wouldn't settle enough to let me fall into a slumber, which is what I really needed (aside from being able to breahe easily). I don't know what's going on. I mean, I don't know why they're so grumpy at the moment, other than the fact that they're often grumpy for no reason. It's all rather frustrating, and quite frankly it's boring too!

On a positive note, it seems as though the coldiness I thought I felt has gone, and so may have been residual allerginess from the hops plant reaction last week. I know that it seems rather a long time from Wednesday to Sunday (or was it Monday???) to still be feeling the effects of an allergy, but they can be like that. After recovering from an anaphylactic reaction, I can be wiped out for a week or more, and my body usually aches with an intense exhaustion so that it almost hurts even to touch the bed that I'm lying on at the time. It's very strange, and I'm not sure I can describe it all that well ... all I can say is that at those times it definitely feels as though I've been poisoned. So although I've not been this bad from last week's reaction, and it wasn't anaphylactic, the pseudo-coldiness could have been an allergy hangover. That doesn't really explain the current lung tightness though, but then, as I say, my lungs never need an excuse - I think they just get bored of doing the same in/out thing all the time.

I went up to the hospital today, but managed to steer clear of all doctors who know me :o) Actually, I did see one of the ITU docs in the corridor, but I managed to scoot into the lift before they could notice that my lungs aren't behaving themselves too well. No, on this rare occasion I wasn't there for myself, but for a friend who's in there. He's thankfully on the mend now, but he's had quite a rough time of it over the past few months with one thing and another, so he's looking a bit wiped out. I always find it a bit odd visiting others in hospital, because I'm so used to being the patient. There's a certain skill to being a good visitor, and I'm not sure that I have it, because although I know what I like from a visitor when I'm an inpatient (and it varies depending on my stage of ill-health or betterness), other people like other things. Sometimes I need just to have someone sit with me and maybe hold my hand; other times I need very basic conversation - reminding what day of the week it is and how long I've been in hospital. Sometimes I need to be distracted from a desperate state of breathlessness by hearing all about what others are up to, or perhaps, even in that state being 'allowed' to tell them my fears or my random thoughts. Sometimes I want to cry with my visitors, or laugh with them. Sometimes I want to play cards. Sometimes I'm not sure if I even want visitors, and that's a very strange state, because you kind of wait all day for visitors to arrive, but then shortly after they do you wish they were gone again. There's nothing very logical about it ... it's just that visitors can be exhausting as well as stimulating, and it takes someone quite skilled in the art of hospital visiting to be able to judge what is needed by the patient at any particular time. I've had much more 'practise' at being the patient on the receiving end of visitors than of being a hospital visitor, so when I visited E today, I felt a little unsure of myself at first, though he seemed to be at a point of quite liking having company, but not wanting people to stay too long. I hope I judged it correctly. In the end I left so that I could find somewhere to use my nebuliser that wouldn't scare a passing nurse into thinking they should contact my ward, not that I was that tight, but I needed to 'do some breathing'.

I'm still hoping that this lung tightness is a blip that might resolve itself, rather than the beginnings of a downward spiral. Time will tell.

3 comments:

Anonymous said...

Becky,
I have had asthma for six years, but this summer it got much worse. I am on thirteen different drugs and have been in the hospital twice over the summer. I have also been told that I now have severe asthma. I can't quite wrap my head around this, and I was wondering if you had any advice.
Thanks,
Emily

Anonymous said...

Becky,
I have had asthma for six years, but this summer it got much worse. I am on thirteen different drugs and have been in the hospital twice over the summer. I have also been told that I now have severe asthma. I can't quite wrap my head around this, and I was wondering if you had any advice.
Thanks,
Emily

BeckyG said...

Emily,

I am sorry to hear about the difficulties you have had and the deterioration in your asthma. It will most likely take a while for you to get your head around your new diagnosis of severe asthma, and to work out what this means for you. I'm more than happy to give you what support I can so feel free to ask anything you like. I suppose in general terms what I would suggest is first of all be kind to yourself, giving yourself time to adjust to your new situation, but secondly don't let it rule who you are. Severe asthma may well interfere with everyday life, and sometimes limit what you can and can't do, as mine does (although it has to be said that mine is unusual in being on the very extreme end of the scale), but do allow yourself to do the things you enjoy doing, so long as they aren't going to jeopardise your health. There may be times when you can't do things you want to or you'd planned to do, and that can be very disappointing, but try not to give up hope, and do look to the things you can do.

If there's one thing my asthma has certainly made me do it has been to reassess my priorities in life. Although I hate what I go through I think I may well be a better person for it, and I'm told by many of my friends that I give them inspiration. It's not how I'd planned my life to be, but these are important things and valuable not just to me, but to others too. So no, try not to give up hope, though do allow yourself to be sad if that's how you feel.

Practically speaking, I advise building a good relationship with your consultant (I'm presuming you have a consultant seeing as you have severe asthma. If not, get a referral to one through your GP asap). Ask any questions you may have; ask them about any developments in treatment, or trying things that perhaps you haven't yet tried; and don't be nervous about sharing your fears with them. I think it's important that your doctor knows the life-wide impact that asthma has on your life, and they may be able to refer you to other services if they think it would be helpful.

Coping with hospital admissions is something else, and I think each person develops their own ways of coping. I'm 'lucky' in that I have direct access to my consultant's ward where I know all the staff and they me. If you don't have direct access to your consultant's ward at the moment then it could be worth discussing the possibility with them. Continuity is important (in my opinion) when you're going in and out of hospital, not just from the point of view of care for your physical needs and those looking after you knowing best how to treat your asthma, but also from the psychological point of view. A severe asthma attack is a traumatic event, and repeated severe asthma attacks can take their toll. Please, don't be afraid to talk about how you feel. Not everyone will understand - some may not know what to say; some may say things to try to make you feel better; some may talk about the possibility of unknown potential cures that are bound to come along; but some may listen and attempt to understand even if they haven't gone through what you have; and some, like myself, will know exactly what it's like and be able to empathise.

I don't know if this has been of any help, but please feel free to ask any specific questions you have too.

Take care of yourself.
Becky.