Still plodding on

I'm still at home, much to my surprise, but still struggling on. I'm tired now and really do just want the peak of the approaching attack to come. I know that there's nothing that my doctors can do, but I think that I may phone either the ward or my consultant tomorrow. I don't know what I expect them to do, but I at least need them to know, and maybe they'll take a look at me up on the ward, even if I'm not admitted straight away. I dunno ... I'm just worn out and fed up and I need somebody to do something, or at least know that I'm going to be needing lots of help very soon. It doesn't help that for the past couple days I've had lots of earache too :o( It's making me more miserable and taking the fight out of me. It's silly how such a minor thing can have such a big effect, but it's because it's on top of this relentless battle for breath.

Moan over. Time now for a cup of tea and to make my way back to bed.

Truly fed up

I'm still at home and I'm now truly fed up. It's not that I want to be in hospital - I certainly don't - it's just that I'm sick of being in this limbo where I'm not well and struggling along, but not quite poorly enough to go into hospital yet. For almost all asthmatics I'd suggest they go to hospital/get medical assistance when they're at the stage I am at the moment, but the situation is a little different with me. I'm already on maximum medication on a daily basis, so the next step is an IV of a drug called aminophylline. It takes its time for aminophylline to do its stuff with me, but it does eventually work (usually), however, as this is the only option for me before being intubated and ventilated (I'm allergic to magnesium sulphate, which is the other line of defence often given), there's often reluctance to jump in too early with it. To be honest I don't completely understand the reasoning behind waiting, as I sometimes think it'd be better to try to stop things before they reach crisis than to wait until I hit that point. Anyway, this is the way things are, so here I am, still at home, still struggling on, and getting thoroughly fed up. I know that it's now inevitable that I'm going to end up in hospital, and that my lungs are beyond spontaneous remission, so I kind of wish they'd just get on with it and give up. Providing I get through the attack, I can then get on with the task of getting better and getting back into life, rather than being stuck on the edge of it as I am at the moment.

I'm so tired. I just want a break.

Foreboding

I've been struggling considerably with my breathing for several days now, and this morning I have that strange, panicky foreboding that I often get before crisis point and admission. I hate the feeling almost as much as the attack, and I know there's nothing I can do about either. This is horrible. Things are probably feeling worse (emotionally so) this morning as I didn't get any sleep last night so I'm already tired before the day has had a chance to get going, let alone the difficulty of breathing my way through it. I have too much work to do to end up in hospital. I'm so far behind with my OU course and really must get my very late essay written and sent off before I end up in hospital ... I have no control over this though and I may not get the assignment done.

I'm so tired. I need some sleep and I need to breathe more easily, but I know that I won't get good sleep until I can breathe, and I know that I won't get easy breathing until the damn thing breaks and I go into crisis first. How am I to get through the exhausting fight for life when I'm so tired before I start? I hate this. I want to cry. It won't help though, because it won't take away the inevitable, and it'd probably only make my breathing worse too.

So what is my plan of action? Plod on as I am, waiting for critical point to arrive; make sure I have everything I need in my hospital bag (it should be there, because I restocked after the last admission); make sure my medication list is up to date; do what I can for my late essay, but also contact my tutor; ensure I have my treatment protocol letter from my consultant to hand; dose up on nebulisers; contact friends to let them know of impending admission. Actually, most of my friends already know and are expecting me to be admitted shortly as I've been struggling so much recently. I think it may be a relief for some of them when I do actually go into hospital, although they know that there's no guarantee that I'll survive. Obviously I have done so far, but it's been a close call on too many occasions, so neither my friends or I take my survival for granted.

I wish I could just quell this feeling of foreboding. I wish I could distract myself. I wish it would all just go away.

Mix-up

I was away earlier in the week, having a few days up in Bamburgh with some of my family for my dad's birthday week away, although it's not actually his birthday until next week. Anyway, I was with my dad, step-mother, brother, sister-in-law and nephew from Saturday until Tuesday. The weather was fantastic, the cottage Dad and step-mum had rented was lovely, and the time together was special. On Sunday we all went on a trip to the Farne Islands, which is one of my most favourite places in Northumberland, and we saw loads of seals, puffins and arctic terns. Actually we got dive-bombed by several arctic terns when we landed on Inner Farne, because some of them had chicks that had decided to take up residence on the public walkway. The parents hovered above, squawking at us and then diving at us in their efforts to get us away from the chicks. That's fine, except that you didn't always see the chicks on the path until you were being attacked by the parents. It was great all the same though, and I got some wonderful photos, although I have yet to download them onto the computer

Monday was spent largely on the beach ... and swimming in the sea! Dad came swimming too, and my nephew, O, came for a paddle. He's only 19 months old and when the waves splashed up on him they were up to his middle, but he wasn't at all phased by it, and seemed to enjoy himself greatly, laughing and giggling his little heart out. When I was drying off in the sun, I made lots of sandcastles for O to knock down. After I built them, he'd look at them, poke them, and then flap his hands to joyfully knock them down. I must have made at least 50 sandcastles that afternoon. After that I buried my feet in a big hole that the dog of a friend of my dad's had dug earlier on. O couldn't quite work out what had happened to my feet at first, so then we (me and my sister-in-law) sat O in the hole and buried him up to his middle. He thought this was great fun, especially when I then built a sandcastle on top of his sand-covered legs. Eventually we had to go back to the cottage - all of five or ten minutes walk away from the beach - to get O fed, bathed, and in bed, but he was very happy and the following day my brother said that he thought Monday had been O's best day of his whole life so far :o)

My brother and his family had to go home to London on Tuesday so that my sister-in-law, N, could go back to work on Wednesday. I stayed with Dad and my step-mum, B, until the early evening, and then slowly wended my way home, following the coastal route, and occasionally stopping off at some of the beaches along the way. It was still warm and sunny then (it's been raining most of the time since I got home), and lovely to take it easy as I made my way back.

It was a very lovely time, and quite a special time too, but also quite hard going on the lungs. There was something around that my lungs didn't like, particularly at night, so I didn't sleep well and had to use my nebuliser a fair bit more than the usual four times a day. I tried to keep from the others how much of a struggle things were, because I didn't want them to worry too much, but it's difficult to get the balance between that and making people aware that there's the possibility of needing further help. Luckily I didn't need emergency assistance, but it's been a bit of a struggle since I got home. Today has been particularly difficult with a sudden lung splat this afternoon when I was out getting my prescription from the doctors' surgery. I avoided having to see the doctor, but only a few minutes after I left the surgery, I ended up nearly collapsing at the pharmacy, and spent the next thirty to forty-five minutes sitting in their consultation room using my nebuliser. I managed to get to the point of being really quite unwell and on the verge of needing an ambulance (or rather, on the verge of agreeing to having an ambulance be called) to being still unwell, but able to get home. I've spent all my time since then sofa surfing, watching the telly, and using my nebuliser to keep/get things under control. I have my community care alarm to hand in case it all goes horribly wrong, but I'm hoping that things will continue to calm and I'll get through at home. Obviously I won't push myself beyond the realms of sense, but I really don't want to end up in hospital if I can help it.

So yes, it's been a bit of a mixed time, as the title suggests - a great time away for a few days with family, but alongside worsening breathing/lungs. Oh yeah, and I'm still trying to catch up with my OU studies, and desperately trying to get an overdue assignment done. I haven't been able to concentrate on study since I got back from the pharmacy/lung splat, hence the watching telly, but I did lots of reading for the assignment yesterday and earlier today, so at least I've done some.

Well now, I think it's time for me to move from the comfort of the sofa and my little nebuliser, to the comfort of the bed and my bigger nebuliser (they do the same thing, but the big one is noisy and not easily portable, so it lives next to my bed). I'll keep you posted with how things go.

Night all.

One down ... still a lot to go

I managed to get my ECA for my photography course finished! Hurray! I actually got it finished and sent off last week, but I forgot to tell you - oops :o/ I'm still way behind with the literature course, but desperately trying to get my head around it and write the essay that was due in last week. My tutor is tremendously understanding and accommodating of my needs, but I would really like to get on top of things. Anyway, as I say, I have at least finished the photography course, enjoy it, and learnt loads too. Actually, I can't believe how much I've learnt in only ten weeks, although some of the new knowledge is still a bit scrambled in my head and it'll take some consolidating. However, I got it together enough to improve my photography and get some good images into my ECA. I won't post them all up here now, but I'll leave you with a few of them.

Nee nah nee nah woo woo woo

That is my most hated sound - the sound of an ambulance. Unfortunately, as you all know, it's also the sound of police cars and fire engines, so it's quite a common sound (especially when living in a city with 3 hospitals, as Newcastle is, and also when you live not too far from a fairly main road, as I do). It's strange, because it ought to give a feeling of relief with the knowledge, when I'm need of an ambulance, that I'm about to get help, but it also signifies the fight for my life. My heart sinks when I hear that sound though, even when it's not for me, when I'm not in need of it ... it's the memories. I find it odd these days if I'm being transferred between hospitals and have a nurse/medical escort (due to my instability) and they get all excited about being in an ambulance with the blues and twos going, and you might be surprised at how many do get excited about it. I guess it kind of is exciting - there's a drama about it that I can understand, I suppose - but to me it means, 'you're in trouble and we [paramedics] don't want you to die on us so we're getting you out of our custody as fast as we can.' I find it of no comfort when the paramedics set off with me in the back and say in a calm, soothing voice, 'The sirens are just to get the traffic out of the way,' because again, this means that I'm in bad shape.

I've been very aware of lots of sirens recently (there's one going past the top of the street as I type this), which isn't good. It's odd how this happens, but often after a while of becoming more aware of lots of blues and twos I end up in hospital shortly afterwards. Maybe it's that I'm aware that my lungs aren't great and my whole body and mind are tuning into all that ... I don't know, but it's something I've observed. My lungs certainly aren't great at the moment and my nebs aren't lasting the four hours that they should - it's more like two to three - which is another warning sign. Aside from my usual pattern of in-out-in-out in relation to hospital admissions, I put this current lung grumpiness down to the weather. It's so close and changeable, and my lungs don't like that at all. There's no air, and I just want to slice through it and let in a breeze from beyond the stifling block that lingers, in much the same way as I'd like to slice into my lungs and let the air move freely for once.

Yes, it's a bit of a struggle at the moment, but time will only tell how long I free before the next admission. Maybe I'll be able to stave the next one off a while, but if things continue as they are they I don't think I have too long. I hope I'm wrong, but I suspect that I'm not.

Self-esteem

For almost as long as I can remember I've had pretty low self-esteem, but over recent years I've become much more content with who I am. However, I'm still a long way off being happy with my body, and at the moment this is a real issue. The consequences of this aren't what they used to be - anorexia in my teens that migrated to bulimia through my twenties - but the crushing demoralisation isn't much different. In some strange way, I think this has contributed to my quietness on here recently ... I kind of don't want to put myself forward in any way, show myself. I know this is silly, and that those who matter really don't care what I look like, and that this is something that most women struggle with in one degree or another, but it still bothers me. I've put on so much weight in the past few months ... and I'm embarrassed ... I'm embarrassed to be me ... I'm ashamed ... I feel uncomfortable. I know that when I'm feeling okay about myself I dress a lot better and take care of my image better, which is probably what I should do when I don't feel so good about myself, but instead I hide away behind innocuous t-shirts and trousers ... I try to become unnoticeable, but know that in my vastness that this isn't possible.

Everyone knows that the solution to weight loss is to eat less and exercise more. I'm one in that everyone. I'm now trying to do something about it, and yesterday went swimming again. This is tough though, because it means practically stripping off in front of a load of strangers, and exposing myself to the small world of the swimming pool. I know it's the only way to change things though, so I will persevere, and hopefully make some progress without getting caught up in the terrible thing of eating disorders again. I know this hasn't been the case for many years now, but I think it's one of those things that's never really cured, just managed, so the possibility of it hangs over me. The change in having more confidence in myself as a person (rather than as a body) these days than in the past should help, but it's not easy to hold onto all that at times when self-esteem is low and body-image is dismal.