Wheely varied reactions

I have a powered wheelchair (which I've named Taz) for those times when my breathing is on it's way down and I haven't got the puff to walk, or when I'm just out of hospital and have very little physical energy, but still need to get out and about. I don't want to use it all the time, because I want to be able to walk and make use of my legs when I'm able to, but it is ever so useful to have Taz for those times when I need it. Most of my friends are now used to it, and some of the folk at church have seen me out and about in it too, although not all that often. As most of my family don't live in the area they haven't really seen me use Taz, but they know that I have it and they're used to seeing it in my flat when they visit. It's taken a bit for them to get used to the idea of my needing it, but no more than me ... in fact, when I first got it sometime last year I felt very self-conscious when I was out in it, and still am to a degree when I'm in my local area. This isn't because of any adverse response I've had, but because I know that I confuse my neighbours by sometimes needing to use the powered wheelchair, but sometimes being fine to walk about. Actually, it can be quite amusing at times seeing the confusion on their faces, but if they don't ask why I sometimes use it and why I sometimes don't then I'm not going to go out of my way to explain - I have no obligation to, after all.

Although it's tremendously helpful to have Taz during those times when I need to use it, it has taken a lot to get my head around the idea of it and to lose most of my self-consciousness about it. People do look though, and it's quite surprising how varied their reactions can be, both in people I know and those I don't. The important people in my life know why I have Taz, but it does seem to surprise some who know the reasons for it when they see me using it ... it feels to me a little as though my identity has changed for them, because I suppose it makes my disability kind of visible. There are those who know me, know that I have Taz, and have seen me use it, but not frequently enough for them necessarily to remember that I have an electric wheelchair until they are reminded by seeing me in it again, and each time that happens I see something not quite discernible fleetingly pass through their mind.

On a few occasions I have gone to church in Taz. The first time I did this felt like a really big deal to me, I think because it meant a lot of people who knew me on different levels 'seeing' my disability, which I don't like to think of as being my identity, but which I think is a part of my identity in a lot of people's minds. Anyway, because I can't actually fit the electric wheelchair into the car then I only go in it to church when it's a nice day/evening and I have the time to trundle my way there and back. Most of the time I can manage church by driving there anyway, as there's usually little need to walk far once there, so it's a while since I was at church in Taz. In fact I didn't even use Taz for church last weekend, despite only being a few days out of hospital, but all the same, after the service, one member of the congregation asked me how my chair was. It took me a little while to work out what she asking after, and I wondered if I'd recently made some passing comment about thinking about getting a new armchair or something (which I haven't been thinking about so wouldn't make sense to me either). The person who asked is one of those I know relatively well, but she hasn't seen me in Taz all that often, although I did bump into her (not literally) while I was in it shortly before my most recent hospital admission. All the same, I thought it rather an odd question and, after she'd explained that she meant my electric wheelchair, I wasn't all that sure how to answer. I mean, what do you say when someone asks after a piece of mobility equipment you happen to need to use at times? It's a little like asking the gentleman down the road how his walking stick is, or the woman who lives round the corner if her zimmer frame is okay. It's not that I mind ... it just seems a little bizarre.

The strangest reaction I've had to date was last week when I was in town. I was trundling up the main shopping street in the city centre, half watching where I was going whilst also gazing into shop windows rather mindlessly. I hadn't gone all that far up the road when I woman I'd never seen before, and who was sitting on one of the benches in the street (it's a pedestrianised street), caught my eye and said 'Excuse me.' I stopped beside her, wondering what she wanted, and she said, 'That's a nice little chair. Where did you get it?' A little confused by this random interjection into my thoughts I replied that it was from the NHS, at which she smiled and asked, 'It wasn't from the Freeman, was it?' Still confused, I answered that I had indeed got it from the Freeman Hospital, and then waited for her response. There wasn't one, so I trundled away again, still rather confused by the short interaction, and wondered if this slightly strange woman was just lonely and in need of some human contact, or if this had been some good deed to talk to a 'poor disabled person'. There was nothing about the interaction that made me feel angry or particularly patronised (well, perhaps a little patronised, if I'm honest, but not much), it just felt odd that a random, apparently able-bodied stranger should stop me in my tracks to ask about the origins of my electric wheelchair.

On the whole though, I'd much rather that people ask me if they have questions about my health/disability. I don't have any obligation to answer, and won't necessarily give all the details, but I'd much prefer people ask questions so they can form accurate thoughts and ideas about my situation, rather than make assumptions or be judgmental. I may have mentioned this next thing before, but when I was in the supermarket a couple of months ago a young child was staring at me as I trundled around the fruit and veg section. At one point I was right next to her and had to ask her to move slightly to one side so that I get past her. In all her inquisitive innocence she asked me why I was in the chair. I didn't mind the question at all, and think that children should be free to ask such questions so long as they are aware that not everyone will want to answer them. Her mother, though, was more than taken-aback by her daughter's question and began to reprimand the child. I said that I didn't mind and I took a few minutes to explain that my legs work fine, but that my lungs don't always work very well, which means that I can't always breathe enough to walk. She said that I looked like I could breathe okay, so I told her that while I was sitting down at the moment then my breathing wasn't too bad, but if I tried to walk then I'd get very out of breath and would be quite poorly. The little girl looked a little thoughtful, perhaps slightly confused (I'm guessing she hasn't come across many people with lung disease before), but also satisfied with the answers I'd given. However, her mother still looked cross with her daughter, so I smiled at her, told her not to worry, and said that I prefer if people ask me their questions so not to be angry with the little girl. The mother looked very confused, and I'm not convinced that the child didn't get told off anyway, but it's only through education, and through personal experience relayed to others, that prejudices (and perhaps fear) will be overcome.

In the nick of time

I'm a few days out of hospital now after going in on Monday last week. I phoned the ward to ask for advice, and was so fed up by then that I actually ended up in tears when talking to the Charge Nurse, so he said to go in since they had a bed. My friend K took me in very shortly after that, and it's a good thing she did, because although I hadn't been horrendously awful when I first arrived, I went downhill fairly rapidly, and within hours was struggling considerably. In fact, it was in the first examination that the doc said she'd get ITU to come up to see me, so even though I wasn't feeling desperately ill at this stage, I was was clearly bad enough to cause concern. It's a bit of a worry that really - the fact that my perception of how ill I am has deteriorated even more, as a result of being so used to feeling poorly. So ITU came to see me, and you know it's not a good sign when they listen closely to your lungs and then tap the stethoscope to check that it's working - an indicator that they can't hear air moving in or out of my lungs. I really hate ITU (I've written a bit about that before), and the ITU team know this too, so they try to keep me on the ward if at all possible, because they think that the stress of going 'downstairs' may make the attack worse. It's a bit of a gamble to take, I suppose, but I know that they'd take me if they absolutely had to, and despite the trauma and upset of it I'd go.

I struggled on all through Monday and Monday night, and then Tuesday and Tuesday night. No sleep. No rest. No relief. Sometime in the middle of the night on the Tuesday I got really scared and ran out of energy to fight on. You may remember that I'd been struggling at home for quite some time and was already tired before I went in, so by the early hours of Wednesday I was beyond tired and felt as though I just couldn't go on any more. I prayed with all my heart, and despite the late hour I texted some friends, including an old friend who's a vicar. He usually turns his mobile off at night, but that night he had it on and was awake. He picked up my message quickly and prayed fervently for me, and I'm sure it's because of his prayers that I'm alive today. I got beyond fear and reached a point of calm acceptance of the situation - that I had no fight left and was about to die. It was a very tranquil peace, and although disappointed that I'd reached the end of my life, I wasn't scared any more ... and then I started to slowly improve. I could feel the drugs that'd been continually pumped into me for over 36 hours begin to take effect, and that gave me just enough of a boost to push through the last few hours. The nursing staff were concerned, and could see how exhausted I was, and they'd requested ITU come up and assess me again, but everywhere was busy, ITU were taking their time, and the staff on the ward were having a heavy night with a lot of 'poorlies' to take care of and only two qualified nurses and one health care assistant (the usual nursing staff level during a night shift on that ward - and 30 patients). The nurses would come and sit with me, hold my hand, talk to me, just be with me whenever they could, but they couldn't be there all the time, which is part of the point of ITU/HDU. Anyway, by the time ITU came up again my lungs had at last settled a fair bit, even enough to sleep! ITU didn't take me off their list though until Friday.

After the fight comes the Big Sleep, and I did my usual of two days sleep, with a maximum of five minutes wakefulness at any time, before being plunged back into an exhausted, collapsed unconsciousness. I emerged from this strange sleep sometime on the Friday, and although still very tired, I could then stay awake for longer than five minutes if I wanted to, and then on Saturday I got out of bed and sat in the chair for the first time. It's amazing how exhausting it is just to sit in a chair when you've spent days in bed (and of course fighting for breath and life), but it truly is hard work, so it takes some pushing to make myself stay sitting in the chair, but I know that's the only way to begin to regain some strength. I managed to get myself 'good' enough for discharge by Tuesday, and I made it home around 5pm on Tuesday evening. It's fantastic being home, and even better that I can breathe more easily than I could for quite some time before I was admitted, but it also very tiring. When you're in hospital you don't have to do anything except concentrate on getting better, but as soon as you get home, particularly if you live alone, then you suddenly have to do everything for yourself. For over a week I'd had to do no more than make my way to the toilet, or before that the few steps to the commode, but come Tuesday night I had to think about going to the shops and then making something for dinner. Going to the shop soon after I get home from hospital is actually part of my post-discharge routine, because I get a bit stir-crazy being cooped up in a small cubicle for a week or more, so I always insist on doing the trip, despite offers from friends to go for me, but it's still hard work. It's not surprising, given the change in pace of things, that I'm now so tired again, but it does frustrate me a little, because I'd so much like to be out and about and making the most of life. Oh well, it'll come.

At the beginning of August each year brand new doctors are let loose on the wards. This year it was 6th (I think it's always the first Wednesday of August). I'm always extremely wary of finding myself in need of hospital care when the new F1s start on the wards. It's not just that they're brand new and, although qualified, still have a lot to learn, but also that they don't know the staff they're working with, they don't know the ward they're working on, and they don't have experience to fall back on. My asthma doesn't quite fit the text book description of it, because of it's severity, and then there are all my strange allergies on top of it, so I need my docs to be really on the ball and not only have text book knowledge of conditions. I know that they have superiors to call upon, but that all takes time. Anyway, the upshot of this is that it makes me a little nervous to be in need of hospital medical attention on the date of the new-starters. Now I know that as the 6th approached I was so much better than I had been upon admission, but I didn't want to hang around for the change over if I could help it, so I made sure I got myself out of hospital on 5th. Just in the nick of time, and not for the first time on this admission.

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.