Coming together

First of all I'd like to thank Dawn, B and Raven/Missy for their lovely comments of support on my last post. It has meant a lot and I'm truly thankful. Since posting To be honest I've taken on board all advice given, I've given into the tears and I'm actually feeling better for it. I was so scared that if I let the upset come to the surface for any protracted time then it'd consume me and I'd end up in that deep, dark pit of depression again, but no, letting some of it out has released the build up and life is picking up again. It turns out that I was also harbouring a chest infection, which I'm sure was feeding into the emotional misery. I'm still rather peeved that I've picked up a chest infection so soon after coming out of hospital, and when I went to my GP on Monday she was keen to have me readmitted :o( To be fair, this GP is new to the practice, hadn't met me before, and so doesn't know my staying-at-home threshold, but she was concerned enough to offer to pay for a taxi to get me home despite my only living 4 streets away from the surgery! I hate to admit it, but I'd actually driven round because I didn't think I'd manage to walk that far, but this seemed to be something of a relief for the doc. Anyway, I didn't go into hospital, but promised that I would go in if I got any worse. I haven't got worse, but I don't seem to have got a whole lot better either, despite the industrial strength antibiotics :o( I have to go back to one of the other GPs next week anyway for a check on the med for my heart rate (ivabradine), so I'll get my lungs checked again then too ... unless of course I need them seeing to sooner, but I sincerely hope I don't. I'm a bit fed up with all this, and with being so knacked...

When I saw the GP on Monday, I also 'came clean' about feeling low. It was almost a passing comment thing, but she picked up on it and offered to refer me to the practice counsellor. The waiting list is four to six weeks, and seeing as I have an appointment with my psychiatrist on Wednesday I said that I'd wait to see how things go with Dr T next week, but that I'd bear it in mind. And now that I'm picking up a little I don't think I'm going to need it, but it was good to be given the option. It's odd in a way, but I think that being honest with the doc about being down and verging on depression has actually helped to pull me out of it a little ... perhaps because it's not a secret, and secrecy can allow the beast of depression to grow into a savage monster. Reveal the secret and the negative force that feeds the beast is released.

Another thing that was getting to me last week was my vision. I have very little central vision in my right eye now from the cataract, and when I was on the beach last Saturday I was looking around, saw a bird, but then had to close my left eye because the sunlight was hurting it due to the Holmes-Adies Pupil, and the bird disappeared. It was still there, flying above me, but I couldn't see it. Thankfully I have my first cataract removal operation on 21st July so this situation will change, but I'm not looking forward to the actual procedure, so it's a mixed thing. I want to be able to see properly again, but I'm also nervous, even though everyone tells me it's quite a simple op and people they know who've had it done say how brilliant it is. I'm sure it must be normal to be nervous about having it done though, despite its brilliance ... isn't it? Surely it'd be more weird not to be a little anxious...?

I had a call from my social worker a couple of days ago. She's leaving. It's hard to believe that I've had her as my social worker for several years, yet only recently found out that I have a social worker, and now she's leaving. However, she did say that my case will be handed over to someone else and that if/when I need to get in touch with them then I need only phone the disabilities team, so that's positive. The other thing she said was that the increased care package she'd put forward for me has been approved and that it starts next Tuesday. Three times a week someone is going to come in, cook me a meal (and have enough to put in the freezer for other days) and be around while I have a bath as I'm more prone to fainting from the POTS and VS when I get hot from the bath. This is good news, and it'll be helpful, but it's also a very mixed thing to get my head around ... I know it's so that I can maintain independence, but at the same time it's a significant loss of independence ... Does that make sense? I never imagined that at age 36 I'd have a carer coming to my home 4 times a week (I already have a carer come once a week to do my cleaning) ... It's strange how life turns out, isn't it?

I'll get there. I am getting there. Life is coming back to me and I've been enjoying the beautiful song of the blackbird that sings outside in the backlane. I haven't seen it, and I don't remember it from previous years, but this year its musical voice has fed my soul and made me smile, particularly at 3.30am when the night has been long and the bird song begins. Yes, there's still a lot of smile left in me yet :o)

To be honest

Sometimes I come out of hospital and fling myself back into life without too much trouble even if it's tiring. Sometimes it's more difficult to get my head around what's happened and it's harder to move on. For some reason this is one of the more challenging times, and I've been quite low since getting home. I don't really know why. I'm tearful though, and I'm not sleeping well, and I'm low. I'm not depressed - I refused to be depressed after fighting it so hard for so many years and finally winning seven years ago - but ... but I'm not coping brilliantly. I don't know why. I don't know why some times are harder than others. I don't know why this time is more difficult than some other times. I don't know why I'm so tearful, but I am.

I went to the beach today, for a short wander along the sand. Usually the rush of the waves and the whipping cool breeze blows holes into any misery I feel, but today the air was muggy, the sand sucked at my feet, the foam of the waves was beery, and I found myself crying as I trudged my way past the surfers. At first I tried to stop the tears, but then it didn't seem to matter. Nobody was interested, and even if they had been, what would it have mattered? It didn't matter. I let the tears come and I hoped that I'd feel better afterwards. I didn't.

Why is it sometimes so hard?
Why is this time harder than some others?

I'm used to the routine of being ill.
I'm used to the routine of the severe attacks.
I know what to expect.
I know that coming through it is not guaranteed.
I still get scared.
I still get worn out by the whole experience.
I still don't know how to deal with the aftermath reliably well.

I phoned my psychiatrist earlier in the week. In the past she's said that I could contact her between appointments if I felt I needed to. This is the first time that I've felt that I've needed to, but I did so I rang. She has no appointments before the one I already have. Fair enough, that's only the week after next, but I could've done with something sooner. I was given the option of speaking to the 'duty worker' so in an attempt to be pro-active in my situation I took them up on the offer. The duty worker turned out to be a CPN. She was nice enough, but obviously didn't have any experience with people who've been in the kind of situation I've just come through. I'm sure she'd have been fine if I were psychotic or something, but reactionally low after a severe asthma attack - not so great. It probably didn't help that I didn't know her, and that she'd called me back early in the morning when I was asleep so was immediately thrown from a much needed slumber into talking about feeling miserable and stressed.

And then I had a call from my social worker. This is a social worker who was apparently allocated to me a few years ago, but I knew nothing about until I asked for a review of care needs late last year and she came out to see me a couple of months ago. That's when I learnt that she/someone has been my social worker for a couple of years. Anyway, she's lovely and since I met her she's really wanted to help and get me all the care I need. She asked to be told whenever I go into hospital and to get the nurses to give her a call if I think I'm going to need any extra support when I get home, even if that's temporary. I didn't call. I didn't think this time was any different from any other time. Not really. She called me. She said she'd had a call from the CPN and they'd expressed concern about me. The thing is, I don't think there's an awful lot that anyone can do. It's that old 'time will heal' thing, isn't it? Time will heal. I'll get my head around it again and I'll come out the other side of this quagmire. It's just that in the meantime I have to wade my way through the mire and keep on pulling my feet out of the quick-sand as they threaten to be sucked in. I won't let them. I can't. Life is too precious to let it be subsumed by dark unhappiness for too long. I just need ... I don't know ... what do I need? ... I need strength. I need to persevere. I need to reach out and find the hand of friendship to help me through. I probably need to let some more of the tears out. And perhaps I need to stop trying to understand why it's hard, and just accept that it is hard, for whatever reason...

... Maybe that reason is as simple as 'because it's frightening' ...

... I try to be brave. I try to get on with it. I try not to wallow in fear ... but sometimes fear follows me and won't go away until I've confronted it. How do you confront a fear that you've survived though? It's a fear of something that's gone, something that's done. How do you face that head-on? It's still following me though, and I think that's what's getting me down, what's making me miserable and tearful, and feeling all those things that are scarily close to depression. I will not let it win. I refuse to get depressed again. Life is for living ... I just need to find a way through. Anyone got a map?

Almost a week

That's how long I've been home - almost a week. It's great to be back, and that first breath of fresh air as I left the hospital was so exhilarating. Wonderful.

It's been a strange old time since I got home. A bit of a mix of doing very little and being incredibly busy. The busy bits have mainly been passive busyness - paperwork. Lots of OU paperwork - application for financial assistance for my final course with them (to begin in September) for my undergraduate degree; gathering and sending medical evidence to accompany my extenuating circumstances form for the ECA (short dissertation-type thing) for the course I've just done; final bits of form-filling for my application for Disabled Students Allowance (yes, I'm only just getting round to this now after all these years); and writing a regrettable letter of complaint to the OU about the way in which my request for an extension for my recent course's ECA was dealt with, and the situation it put me in. The OU are usually brilliant in supporting students with disabilities and/or health problems, but in this instance they severely let me down, and their previous record of excellence makes there response this time almost worse. Anyway, it's been a difficult decision to make - to complain - and a difficult letter to write, but it is written and has been sent so now all I can do is wait and see what response I get. I don't want anything for myself, other than an apology, but I think some of their policies need re-evaluating and changing, and that's what I've asked for in my letter. Anyway, I probably ought not to say too much about it until it's been dealt with.

The other thing I've done is finally submit my application for the Postgraduate Certificate in Creative Writing at Newcastle University to start in September. It's been on my to-do list since I had that meeting with the prof at the university in April, but I was rather busy with my OU course and needed to put all my energy and brain power into that. Since my meeting with the prof I've been umming and ahhing about what I needed to write in my personal statement on my application form, because it's a heck of a long time since I've had to sell myself on paper like that and I wasn't sure what to write, but I managed to write it a day or two before I left hospital. The application itself was an online one and not being the most computer-literate person in the world it took me a while to work out all that was necessary to get the page to work and then how to fill in all the bits of the form as it wasn't completely straight forward. I did it though, and by Sunday night my application was winging its way to Newcastle University. Now begins the wait.

Yesterday I had a meeting at the Open University Regional Centre. The OU has its own students association (OUSA), which has regional groups in addition to the online OUSA groups. OUSA in the North has been dormant for a long while, but now there are a couple of us who have decided that we'd like to regenerate it, and this coincided with the North Regional Committee meeting, which is a collaborative meeting between Regional Centre staff, Staff Tutors, Associate Lecturers, the Regional Director, and Students/OUSA representatives. There haven't been any students at recent NRC meetings simply because there hasn't been an active OUSA group in the region, but as students interested in regenerating OUSA in the North, C and I were invited to attend the NRC. It was interesting stuff and interesting to get a little more insight into the running of the OU and the 'hot topics'. I'm slightly disappointed that I've only got involved now as I only have one year left with the OU, but it'll be good to be active and involved while I can, and maybe give students in the North a bit more of a voice. I was knacked after the meeting, but good knacked. Knacked from having done something. Knacked with a kind of invigoration. Stimulation.

And today I've been exhausted and have done very little indeed, which is exactly what I've needed to do. This evening I was going to go to a poetry reading by Paul Durcan but the friend I'd been going to go with isn't too well so couldn't make it. To be honest, I'm glad she's taking care of herself, rather than pushing herself to do too much and ending up more exhausted and ill. We'll meet up another time, and there'll be other events to go to together.

The only thing I have planned for tomorrow is a hospital appointment :o( It's with an ENT consultant. Not that there's anything wrong with my ears, nose, and throat. No, it's to see if they can do anything to help with my chronic dizziness and imbalance. Although it's caused by the POTS and there's nothing ENT can do for that, they have a lot of experience in dealing with dizziness and imbalance, so my GP thought they'd be the people to refer me to for advice if nothing else. It'll be great if they can do something, though I don't know what that something might be, but I'll let you know if they come up with anything.

So there ya go - almost a week. Lots of bits and lots of nothing. Next week is looking busier, but with lots of good things. Stimulated, active, happy exhaustion here I come.

A different perspective

It was last Thursday that I first started to notice the oedema (fluid retention) in my legs and it was starting to get uncomfortable. I mentioned it to the nurse and she decided to do something with the bed to raise my legs. I think there's some kind of platformy thing under the matress that can be lifted up in addition to the knee brace, and it was this that she was trying to do something with, but she'd never done it before so didn't know what she was doing. She fiddled and fumbled, and yanked and pulled at stuff under the matress, but couldn't get it to do what she was hoping for. Instead she ended up folding me in half. This wasn't particularly comfortable, it has to be said. Nor was it very condusive to breathing. She gave up trying to do the leg-raising thing and unfolded me.

As the day progressed so did the oedema so that by night time it was very uncomfortable, to the point of hurting, and my legs were so swollen that I could barely bend my knees. The swelling was spreading to my whole body too and I getting miserable. I lay in the dark feeling sorry for myself when I remembered that the bed controls at the end of the bed (the ones meant for staff use, as opposed to the patient ones on the side of the bed) had a tilt button. Perhaps I could tilt the bed so that the whole thing was slightly head-down/feet-up and this might help the swelling in my legs. Now you need to remember that I still had the drip in my right arm, and that this arm was still fairly incapacitated by the shoulder dislocation the other week (it's getting better now, thanks to the enforced rest). Right then, I was setting out on a mission.

I shuffled as far as I could up the bed, hampered not only by my fairly useless right arm, but also by the limitations of relatively short oxygen tubing. So I was as far up the bed as I could get, with my head pretty much turned in the opposite direction as the oxgen mask was pulling on my face and it'd be a bad idea to lose it all together. And it wasn't going to make a whole lot of difference to be facing the right way anyway as it was dark so I couldn't see very much. With my good, left arm I flailed about trying first to locate the bed controls that I knew were hanging on the end, and then trying to get hold of the controls. This was not an easy task, and was made more difficult by the coiled wire they're on having got caught on something. I eventually got hold of them. I found the buttons. Well, I found some buttons. First of all I found the button for the back rest, which wasn't much use to me, so I fingered my way down the control panel and found what I thought was probably the tilt control. It wasn't. It was the horizontal up and down control. So I spent a while going up and down, up and down, trying to get down, stay down and find the next set of buttons whilst keeping hold of the controls and still facing the wrong way. Success. I found the tilt buttons. I tilted the bed...first of all the wrong way, which threatened to have me slide down the bed in the wrong direction, pulling the oxygen mask from my face and the drip in my arm that was now quite painful in the shoulder area from the awkward position. I tilted the bed back again in the other direction, and kept tilting it so that the leg end was raised...only I tilted it too far. I slid down the bed, lost hold of the controls, the oxygen mask pinged onto my face where it had been pulling, all tension went from the tubing and from the drip and I was getting on for being upside down. I tried to scrabble my way back up the bed, but mountaineering wasn't my thing, and my useless right arm wouldn't let me pull on the bar at the side of the bed to help. What to do? I lay back and contemplated my situation ... an almost upside down situation. Right then, there was nothing for it. I was going to have to call the nurse with the bell and come clean about my antics in the dark. Great. I reached up to where the nurse call bell was and discovered that I couldn't reach it. I did some more one-armed windmilling in an attempt to get hold of the bell, but to no avail. I lay back, and I discovered that being upside wasn't actually very helping with the whole breathing thing. At least I could reach my own bed controls from where I was so I raised the back rest a little, which was kind of okay, except that now I was upside down and folded in half. Not too comfortable. It then occurred to me that I was not only stuck, but very stuck and not able to get unstuck, so I resigned myself to my situation, developed a new appreciation for bats, and comforted myself with the fact that I'd be checked on at some point and my (upside down) position would be noticed and rectified. I'm certain that I was checked on through the night, because everyone is, several times, but they must only have peeked through the window of my little room, seen that I was still there and failed to notice my predicament. I spent the night upside down and folded in half.

The nurse came in the morning to give me my meds. 'Oh my, what's going on here?'
'Hmm. Yeah. Morning ... Ya see, I'm a bit stuck...'
Lucy gave me that quizzical sideways look that says, 'I want to know how this happened, but I so don't want to know how this happened.'
Without a word, but still with that look, Lucy untilted me, unfolded me, and the blood rushed away from head where it had been pooling all night. What a relief.
'Go on,' she said, 'I have to know.'
I tried to explain.
Lucy fell about in hysterics and became incapacitated by the mirth.
I was somewhat embarrassed, but relieved no longer to be patient origami.




By the way, the whole thing failed to do anything for the oedema. Typical!

Pushing it

Last time I wrote (far too long ago) I was in the final throes of my children's literature Open University course. I think I was doing the final assignment, but still had the ECA (End of Course Assessment - extended essay thing) to do ... or I might have been doing the ECA. Anyway, either way I was very busy and very tired and my lungs were going downhill. I managed to get both bits of work done, amazingly, although I have no idea how much sense my ECA makes as I was getting more and more poorly as time progressed and it was a real race against time. I didn't think I'd get the ECA done if I'm honest, but I did, and then I filled in an extenuating circumstances form, sent that off (with medical evidence to follow), and then went to hospital. On the Thursday, which I think was 20th May, I had to see my GP for a review of my newish med for the POTS, and he wasn't at all happy with my lungs. He wanted me in hospital that day, but I still had 1200 words of ECA to write at that time so I said that I couldn't go in. This was stupid, but at the time it was all I could think - I had to get the ECA done and sent in or I'd fail the course. Whether it was purely the POTS or a combination of POTS and worsening asthma, by the end of Thursday I couldn't stand up long enough to make a cup of tea without passing out, so things really were miserable and now I can see that they weren't safe either, but at the time I couldn't discern this. Well I got the essay done, and sent it off through the ether at something like 11:30 pm. I should've gone straight to hospital then, but I didn't. I knew that I couldn't go straight to Ward 29 at Freeman at that time of day and I didn't want to go to A&E if I could avoid it, so I hung on until Friday, which was really stupid, and as it turned out Ward 29 didn't have any beds so I had to go to A&E in the end after all. By this time I definitely wasn't thinking straight and was sitting at home wondering how I was going to get to hospital, and even considering going on the bus! Thankfully I had a moment of lucidity when I remembered about the existence of ambulances so called 999 and had the paramedics with me within 10 minutes. When I got to A&E the docs were very worried and I went straight into resus, where the consultant kept saying to the other doctors and nurses around me, 'Be airway alert! Be airway alert! We may lose it without a lot of warning. Be airway alert!' If I'd had the breath and the energy I might have pointed out that I was still conscious and this was doing nothing for my anxiety levels, but I had neither breath nor energy enough so just gasped my way through it as it was ascertained that I was now in respiratory failure with a pO2 of 6 (anything lower than 8 is respiratory failure) and a pCO2 also of 6, which is just about normal, but is not a good sign in conjunction with the low pO2. Basically I was desperately ill, and the docs were sure they were going to have to ventilate. They decided to hold off for half an hour, see if the aminophylline they were starting was going to have any effect, along with back-t0-back nebulisers, then repeat the blood gases and take it from there. In the meantime they decided to put in an arterial line so that they didn't have to keep stabbing me for gases, and I'd need one anyway if I was going to be vented. My arteries are so scarred from having had so many arterial lines that it took an hour to get one in, and ultimately they could only get it in my foot! The hour it took to get in was very hard work breathing wise (and fear wise), but it did give me just long enough for my gases to pick up enough to avoid immediate life support - an obvious relief in many ways, although also difficult as I was so tired I could've done with the rest really. Either way, I was still too poorly to be transferred from A&E to RVI, even to RVI ITU so I went to ITU at the General Hospital, where A&E is. I hadn't been in that ITU as a patient before, and hadn't been in there as a visitor since my close friend Carol died there at the end of 2005. It was difficult going there now as a patient. At least I wasn't in the same bed that Carol had had, although I was in the bed opposite so found myself looking over that way and remembering a lot.

It was touch and go for most of the night whether or not I would need to be vented or have BiPAP, but ultimately I got through without. I was hugely exhausted by the morning and still very poorly, but was able to be transferred to Ward 29 at Freeman by the middle of the afternoon. I'm still on Ward 29. I came off the aminophylline infusion on Friday, which is always a step in the right direction, and although I'm still on the oxygen (4l/m) I'm doing okay. However, for the first time I'm having horrendous problems with water retention. My whole body has been incredibly swollen, stretched, and bloated. For several days my legs were so full of fluid that I could barely bend my knees, and my hips are still incredibly swollen and tender. It's horrible. It's painful. It's been making me very miserable. Over the past few days the docs have prescribed furosemide for me, at first in tablet-form, but then by IV as the tablets weren't doing anything. I am gradually losing the fluid, but I've still a way to go and still very uncomfortable. I haven't had this problem before - a little oedema from inactivity, but nothing anywhere near like this - and I don't know why it's happened this time. I don't know if the docs know either...

Then, just to top things off, last night I asked for the usual evening mug of hot chocolate (the last hot drink of the day at around 8pm is a milky one if you want it :o) ), but instead of the normal Cadbury's drinking chocolate that I'm okay with the student nurse gave me Ovaltine. I took one small sip, realised it wasn't the right stuff and proceeded to have an allergic reaction to the milk powder in the Ovaltine. I'm fine with fresh milk, but milk powder has preservatives in it that I can't have. So had a double dose of two different antihistamines, 2 double-dose nebulisers, and 2 epi-pens, and although I felt rubbish I have survived to tell the tale. The junior doc came to see me while I was in the throes of the reaction, and she called in the registrar, who's a bit of a chocolate teapot doctor so wasn't much use for anything, and the junior then ended up calling ITU just to make them aware of me and my situation, although I was fairly certain by that time that I was going to be okay. I was. The staff kept a close eye on me all through the night, and I made it through, albeit it feeling rotton, and miserable and grotty. I rather suspect that the student nurse spent a lot of the small hours of last night learning about anaphylaxis.

This is not the best start to my summer holidays after a hard 9 months of study.

Bullet point update

This is going to be very short and in note form as I'm snowed under at the moment, but also very aware that I need to update you all.

• I'm working myself into the ground with essay writing
• I'm on to the last hurdle of my current OU course - Children's Literature
• Trying to write ECA (End of Course Assessment - like a short dissertation-type-thing) and it's resulting in ECA (Emerging Cranial Atrophy) ;oP
• Not sleeping at all well and have had two nights this week with no sleep at all, and all other nights have been disturbed
• Lungs are on the downward slide
• I think when the essays are done and sent, and the adrenaline has subsided then I might be in for a lung-splat :o(
• Peak flow currently around 150 post-neb, so while that's pants it isn't (yet) awful awful awful ... for me.
• Lung grumpiness is contributing to lack of sleep
• Lack of sleep has meant that I've listened to a lot of the World Service.
• Heard a news story on WS a week or so ago about a British man in Spain (a Lord, or something ... can't remember) who's been issued with an eviction notice ... on his grave! He's been dead since the late 1960s, but the authorities are seriously considering exhuming him for not having his grave maintained, which isn't all that surprising as his wife died not long after him and they didn't have any children. Madness!
• Heard another item on the news about the result of one of the local elections, but unfortunately I can't remember where it was. Anyway, the results of the two leading parties were exactly the same so they got out a pack of cards and drew for the highest - highest card won! Shockingly this is within the laws of election!
• Missed cateract operation date last week because the first I knew about it was a phone call from a nurse on the eye ward asking me if I knew I was supposed to be there for surgery. No! I didn't! They'd forgotten to send me a letter! &*^£%! I've had to go back on the waiting list and can only hope that they tell me about it next time. Very, very annoyed!
• My shoulder is still sore, but it's mending now
• I've run out of milk and the cat is rubbish at shopping

A backwards glance

Last week it was my mum's birthday and in celebration she had a week away, hiring two cottages in North Yorkshire for the family to congregate at. We all went - My brother M with his wife N and two boys O and D, my brother C and his new wife S (they were married only four weeks ago in Cambridgeshire - a very lovely time), my step-dad J, and myself. Everyone else went from Saturday to Saturday, but I knew that although it'd be lovely it'd also be tiring and it'd be daft to overdo things, so I only went from Wednesday to Saturday. I did indeed have a very lovely time, and it was great to be with everyone again, even though we had all recently been together at C and S's wedding. Weddings are busy and there's often little opportunity to spend quality time with those you'd like to, and although C and S's wedding was small it was typically busy. I only met S for the first time the day before the wedding as I'd been away in Somerset when she and C had been up to meet and stay with my dad and step-mum back in September, so it was lovely to get to know S a bit better at Mum's birthday week away.

The cottages we stayed at were lovely. They were on a working farm not far from Thirsk, but with the feeling of being pretty much in the middle of nowhere. From the front of the cottages we had a great view of the Kilburn White Horse over the farm's sheep fields that were abound with joyful spring lambs. There were two lambs in a small pen in a barn just off one of the fields. One of them had been rejected by its mother; the mother of the other had died, so both were being hand-reared and the farmer had told us it was fine for us to take my nephews to see them, which resulted in 18 month old D acquiring the word lamb into his vocabulary, and very sweetly waving and saying, 'Bye bye lamb' when we left them. The whole place was very child-friendly with a huge field for kids to run around in, and also with a big climbing frame with slide, a set of swings, and an enormous trampoline. O and D particularly liked the trampoline, even distracting O from the slide, which he's usually a real fiend for. The cottages/farm also have an indoor swimming pool and sauna, which the boys loved, going for a swim every afternoon. I would have liked to join them and the others in the pool, but I didn't think it'd be terribly sensible while the POTS is so unstable and I'm still passing out so much; and the sauna would have been an even worse idea as the heat could affect my BP. I tried to make the most of the times when the others were at the pool though by doing some study on the Thursday afternoon (I had an assignment due), and having a very needed sleep on the Friday afternoon. Friday was my mum's actual birthday and we all went out to The Hare Inn - a 13th Century pub in nearby Scawton - for a meal. I had to take my own food, of course, but the pub were fine with that, and when it came to puddings we even found that there was one they did that was Becky-friendly - Lemon Possit. It was delicious, and it was wonderful to be able to enjoy eating out somewhere other than Peppy's (even though Peppy's are great and ever so good to me), although it did cause some anxiety for the rest of the afternoon in case I had a delayed reaction to it, but there was nothing in it that was likely to kill me, and all was well :o) After the meal Mum, J, C, S and I all went to Rievaulx Abbey. It's a place that W and I had tried to go to earlier in the year, but it was out of English Heritage season, so we'd ended up going to a nearby National Trust place instead. It was nice to get to have a look around Rievaulx Abbey at last, and it really is quite spectacular. I was, however, utterly exhausted afterwards and was grateful of the chance to have a fairly lengthy afternoon sleep back at the cottages while the others went swimming.

I think it was the Thursday afternoon when I was doing a bit of study when C came in for a chat. I don't get to see C very often, because he lives in Cambridgeshire and is very busy with work without much holiday. C's had a lot to contend with over the years, and has led the most bizarre life of anyone I've known. He's overcome a huge amount though, and has miraculously got his life back on track when it could so very easily have gone so very, very wrong. He's the person who I admire most in all the world, and it was great to have the opportunity to talk with him. He came into the cottage clearly knowing that I was alone and he wanted to talk a bit about our first step-mum K, who was a very odd lady and a very destructive force in our family. She died in March 1996 from skin cancer, and despite her complexities and the negativity that we all (my brothers and I) felt towards her, I was upset when she died and this is what C wanted to talk about. For all that he and S are now married, they've only actually been together for about a year, and C thinks that S is having difficulty in understanding why he is having trouble expressing the very complex relationship/situation/person that was K. He's not alone though - it is/was very complicated. K clearly had some mental health issues that weren't dealt with or even properly recognised by those immediately around her (or herself), and I've already mentioned that she was a destructive force ... but her extreme immaturity led to some fun times too, and that, for me, is where the confusion has been. How do you marry together the person who instigates holiday activities that feed the child's soul with the person who has inane jealousy of your mother for 'getting' your father first, confuses you with your mother and consequently frequently treats you atrociously, and who tears the family apart with hate and a degree of insanity? Very confusing for anyone, but especially when you're a child ... and for all that I was almost 22 when K died the confusion was unresolved, and maybe some of it always will be, although it matters less these days ... it has less immediate effect or reason to cause difficulty. C was younger though, and with other complicating factors for him I think it was even more difficult for him to comprehend, so it's not very surprising that he's having trouble expressing it to S. I've been pleased that he felt able to talk to me a little about it, and I've said that if it'd be helpful then I'm more than happy to talk through some of it with S there too. I'm not sure if he'll take me up on the offer, but it's there. I've found myself thinking about it all quite a lot since our chat though, and have talked about it myself with Mum too, who of course has a different perspective on the whole situation, so it's interesting discussing some of it with her too.

Families are weird things, aren't they? Kind of closed entities, yet so vulnerable to change too ... which can have both positive and negative consequences...