Travel

I'm back. I came back on Tuesday, but I've had a late assigment to get done so I haven't updated things here. So yes, I did the long drive home from London to Newcastle, and although it was tiring, it was definitely worth it to see O and meet D. On the way down on Saturday I'd been intending to go down the A1 all the way, but wasn't quite paying attention at the point where the A1 splits off to the M1, ended up in the wrong lane and found myself on the M1. It didn't make much of a difference really, except it changed my point of entry to London. Having never driven in London before (or at least only a handful of times about 15 years ago) I wasn't looking forward to working my way through it, but I wasn't too stressed out as I have sat nav, which still impresses me, even though I've had it for 3 years. I ended up having to go all the way through the middle of London: down Park Lane, past Marble Arch, over Vauxhall Bridge, but I coped. However, I decided I'd try coming home a different way: Up the M11 and join the A1 somewhere after Cambridge. This was actually much better, partly because it was a change of scenery, and the A1 is such a boring road that a change of scenery is a very good thing, but because I'd never come this way before I used my sat nav till I got to the A1. Fine ... except that I somehow managed to accidentally punch into the sat nav that I wanted to go via some very random, very isolated, tiny road somewhere between Ickleton and Duxford in Cambridgeshire. I have to say that for all it was an unexpected and unnecessary diversion, it was ever so pretty, and I think I'd like to venture further into that area sometime. Perhaps I'll leave it till I deliberately plan to go there though ;o)

While I was travelling up the M11 and A1 I came across some place names that reminded me of previous travel. One of the obvious ones was Grantham, which you may recall is a place I ended up taking an unplanned diversion on my last return journey from London. I was on the train, had an anaphylactic reaction to a small dog that sat on the knee of the lady next to me, and the train ended up having to do an emergency stop for me to be taken off by paramedics, who had to carry me over the railway lines (we were on the wrong side of the lines for the ambulance) and take me to hospital, where I had terrible care in A&E, but excellent care after that, and had several days in ITU. I think I could just see the top of the hospital as I drove past Grantham on the A1, and it stirred up all sorts of feelings ... pretty much all negative. I've been in rather too many different hospitals around the country (and one in Canada), and it's no fun. In fact, knowing that I can never guarantee that I won't end up in hospital any time I go away (or any other time either) is tough. Of course I always hope that everything will go smoothly, that I won't end up ill ... but then I suppose I also hope that if things do go pear-shaped then the care I'll get at whatever hospital I end up in will be good. Mostly it is, but somtimes it isn't and that's frightening. I've mentioned before that I carry a letter from my hospital consultant with me at all times. This letter has information about the nature of my asthma and the treatment that works for me, and most usually doctors find this helpful, particularly as I'm usually unable to speak by the time I get to hospital so can't tell them myself what helps. The problem I had in Grantham A&E was that the doctor and sister attending to me decided to ignore my consultant's letter, to disregard my state (I have no idea why), and even considered discharging me! It was only upon insisting (as much as I could in my state of only being able to speak one word or part-word at a time due to breathlessness) that they telephone my consultant, whose contact details are at the top of the letter, that they did eventually admit me. I was taken to the Emergency Admissions Unit (EAU) where I was finally able to reach my mobile phone and could text my mother, tell her what was happening, that I was very scared as nobody was helping me, and she was able to find the telephone number for Grantham Hospital and explain the seriousness of my condition. Actually, the doctors in EAU were completely different from the one I'd seen in A&E, were on the ball, and got on the case of helping me as soon as they were aware of me and my condition. It was ever so frightening though, and I couldn't help but find myself thinking about it all, and mentally reliving it, when I was driving past Grantham on Tuesday. It sends shivers down me.

One of the other place names I drove past was Stamford, again in Lincolnshire, and then for Burghley House. These are places with memories totally contrasting those of Grantham. Back in the summer of 2006 I went on a Great Camping Expedition on my own around the country, which turned out to be the most fantastic holiday I'd had for a very long time, even though it included a week-long stay in Treliske Hospital, Truro, Cornwall (where the care was fantastic throughout). My first stop on this holiday was a tiny little campsite in Rutland, the smallest county in England - so small in fact that when I drove the 5 miles from Rutland water to Stamford I kept falling out of Rutland and into the surrounding counties. I think I did Rutland, Cambridgeshire, Peterborough (though I wasn't sure if this was a seperate county or just a random sign post), and Lincolnshire. Anyway, Burghley House is wonderful, although to be fair I didn't actually go into the house as I was too late that day, but the sculpture garden in the grounds of the house are wonderful. It was a miserable day of grey skies, intermitent thunder, lightening, torrential rain, and drizzle, with only the occasional outbreak of dryness, but the sculptures distracted me from all that. They were varied enough to keep being interesting however many I saw, and while some were obvious, others were hidden and you'd just stumble across them as you meandered around the gardens, or even looked up into the trees.

It's a place I'd like to go back to ...

While I was driving back on Tuesday I realised, once again, that I'm overdue a holiday, and would love to do something again like my Great Camping Expedition of 2006. There's so much of the country that I still haven't seen, even though I did 2000 miles in 2006, but if it were at all possible I'd like to go beyond UK shores too. This of course may not be realistic, and then there's the language barrier, which is a potential additional risk, especially as I speak no language other than English and British Sign Language ... but maybe ... I can dream ...

Restoration

I've been getting increasingly weary over recent times. Although my last admission is something like an amazing 8 weeks ago, I don't feel as though I ever really got my energy back. This has been something of a concern for my consultant as I'm so used to severe asthma attacks, and know my own recovery process well. This doesn't fit with the usual pattern of things, and together with a series of other symptoms he's now wondering if I have hypothyroidism. He's taken blood (well actually he had the phlebotomist do it), and I'm due back in clinic on Thursday so I may get the results then.

So there's been that, and whether or not it turns out to be hypothyroidism, I've been so fatigued at times that I've been completely unable to function. Then there's the usual grumbling of my lungs, and in the past few weeks they've been feeling tighter than they had done. I don't know if this is just because they're bored and want some more attention, or if it's a result of coming off the methotrexate and my blood levels of it will now be significantly lower than they were. It could be a combination of both. It's harder work doing everything when breathing is more challenging.

In amongst all of this, I'm trying to keep up with my Open University studies too. I'm doing okay; not as great as I was in the previous course, but still pretty well. I enjoy it tremendously, it's just difficult to keep on top of it when I'm so fatigued, not feeling brilliantly well with my lungs, and trying to spend more time with my dad (he's ill), which as well as being really nice, also gives my step-mum a bit of a break.

... And then of course there's Emma's death ...

I'm weary.

I've come down to London for a few days to stay with my brother, sister-in-law and two nephews. O is as gorgeous as ever and his language has come on so much since I last saw him in August. He chatters away constantly, and is such a happy little chap. He's an absolute delight. D (the nipper) was born in September, and I missed the last time I was supposed to come and meet him, because everyone here was full of cold and it would've been too risky for me to be surrounded by that. I have finally got to meet my littlest nephew (and also god son-to-be), and he's absolutely scrummy. He's been a bit grouchy at times today, but he's so gorgeous and gives such lovely smiles when he wants to.

For all that children are hard work, which isn't terribly wonderful when I'm so fatigued, the boys are restoring my soul. They're injecting a bit of life back into me. I know that I would have been thinking an awful lot about Emma anyway, but O and D seemed to have heightened something in me even more ... maybe it's that they're at the complete opposite end of life ... I don't know. This hasn't been a bad thing though ... it's more of a reminder to do everything I can to make the most of each day. I can't really explain ... All the upset and sadness of Emma's death are still here, my heart still cries for her, but the boys are so joyful and seem to kind of remind me of the love of life that Emma had.

I'm going back home on Tuesday, but between now and then I'm loving the restorative qualities that O and D are full of. I'll bask in their cuddles and smiles and giggles, and store up their joyfulness inside myself. I'll take home lovely memories, and hopefully be able to draw some physical strength from the spirit of those memories.

Set free

I don't know how to follow on from the news of Emma's death and my last post. Although death is the end of a life - and Emma's was a special life - it can't mean the end of the life of everyone who knew the person who has died. On the other hand, we are halted in our tracks by the suddenness of the event and the sadness of the loss. We are left with a hole in our lives that will never be filled by anyone else, because it's a hole that is specifically shaped - in this case it is Emma-shaped.

I was woken this morning by my carer at the door. A comes once a week and does a marvellous job making my life that little bit easier. Mornings aren't my best time lung-wise, and quite often I'll go back to bed for a while after I've let A in. She gets on with what she can and she brings me a cup of tea or coffee in bed, which is just lovely and such a rarity when you live on your own. This morning I went back to bed, got my lungs working and then went back to sleep instead of getting up. I didn't want to face the day, and actually was completely exhausted too from a very unsettled night. An hour or so later A came in with another cuppa and quietly asked if I was okay. I told her about Emma. Of course A didn't know Emma, but she was saddenned all the same, because that's the kind of caring and sensitive person A is. I got up. A changed the sheets on my bed while I cuddled the cat in the living room, and then she sent me back to bed. I was exhausted, but then last night was an emotion-filled one with little sleep. I made up for it after A left and slept into the afternoon, but this has meant that my day has felt somewhat upside down, and I know that I can't let it be the beginning of a pattern, but today it's okay.

One thing Emma would hate would be for everyone to stop their lives. She was all for living and making the most of things, so I must remember her whilst embracing life, rather than let it slip by in a haze of sadness. Yes, I will mourn her. Yes, I will think of her often and contemplate the ways in which she's touched my life and the lives of many around the world, but I have to keep living, we have to keep living. It was Emma's wish that we should live without regret, and I know that if I stop trying to live by the mantra of 'today is the tomorrow that you worried about yesterday,' and my tag-line, 'I tried depression and it didn't make me any happier,' then the rest of my life will be full of regret - regret that I stopped remembering to live when I was alive.





I'm not feeling very articulate tonight. Perhaps instead of writing any more I will leave you with a photo that I took at the Farne Islands last summer. It's an Arctic Tern.

Go on Emma, you're flying freely now.

A sad day

For some time now I had been meaning to add a link to the list of 'Blogs I Read' to that of Mad Asthmatic, another with brittle asthma. I found out today that, very sadly, Emma died on Sunday. It wasn't the asthma that killed her, not directly at least. She also had diabetes and a heart condition, and it was a heart attack that she died from, but the asthma had worn her body down too. She didn't make it as far as hospital, despite calling an ambulance, and died in her own home.

I originally got to know Emma/Mad Asthmatic/Rusty through the Asthma UK discussion forum/support group, and as time went on we discovered that we had more in common than 'just asthma'. She was also keen on photography, creative writing, and a variety of craft activities. She loved reading and relatively recently graduated with an MA in English literature. It turned out that we shared a lot in the way we try to live our lives too, and in trying to make what we can out of each day, even if it's a bad health day. When Emma found out that I had a blog, she sought it out. She sought me out, and in doing that I found her blog. We posted comments to each others' blogs, and then we began to email each other privately too. We shared things with each other that can be difficult to express eloquently enough in a public space for those who haven't experienced to understand what it it's like, but we didn't need to be eloquent with each other. We've had some similar experiences; been confronted with promises of false hope, given by people who are too fearful to face the prospect of death that they haven't been able to cope with our talking about the reality of there being no further treatments; and we've felt the same fears. We never met face-to-face, but we certainly met heart-to-heart, and that is what friendship is.

Looking back at the last thing that Emma wrote on her blog, it reads almost like a premonition and a preparation. It is a beautiful piece of writing with a wonderful message in it. I'm sure she wouldn't mind me copying it into here for you to read:

No Regrets
The certainity of life is death, but the passage of time between birth and death is ours and ours alone.

Try to make sure when the time comes that you have few regrets of the life you have spent. Do not spend your life hanging your head down, for you will miss the temperance and severity of the world in which you live. Call a spade a spade and you won't go far wrong, if you give out harsh words be ready to receive them back. If you can not take what you yourself hand out then keep silent.

Friends will come and go. if they are meant to be true then they will remain and those who are just passing ships will pass through your life at the given times. Remember each friendship with affection but do not mourn its demise for another friend is around the corner.

Follow the road that you wish to follow for your life, do not just follow the crowd unless it is what you truly want. If you make a mistake then have the courage to rectify it, if you wish to take a different path to those around you do not apologise. For we have only one life and in order not to regret those missed opportunities then we must be prepared to walk against the crowd at some point.

Do not stay silent if there is someone you love, do not regret words unsaid, do not assume they know how you feel. Red faces can be got over but unsaid words will remain just that. Make it your mission to brighten one persons life each day with a smile and a hello. All free and yet can make such an impact. Do not ask "How are you today" if you don't want to know. Have the courage to be yourself and not care what others think.

Make having no regrets your mission for life.




Rest in peace and without regret, Emma.

In the post

After my admission in November I mentioned my wanting to write to the paramedics who take care of me on my way to A&E to thank them. I wasn't ever successful in getting the names from the ambulance service of the specific paramedics who came to my rescue, so at Christmas time I decided to send the North East Ambulance Service , as a whole, a Christmas card. In the card I thanked them for the wonderful and vital work that they do, and said that I hoped they knew how appreciated they are, even though they come across many who don't appreciate them. I told them that I am a regular user of the NEAS for my brittle asthma, and thanked them for helping to keep me alive thus far. I knew that it was unlikely that they'd have a peaceful new year, but I wished them one anyway, and said that I hoped they didn't get too many calls from drunks wanting a quick lift home and nothing wrong with them other than the consumption of too much alcohol - i.e. misuse of the service. There were one or two other things in my note to them too, and I can't remember any of my exact wording. I am of the belief that it's as important, if not more important, to acknowledge positive experience as well as the negative. Expressed appreciation can go a long way to bolster flagging morale. Maybe you can look out for opportunities to take this stance too - nothing is too little to be appreciated.

Anyway, much to my surprise, I received a letter in the post last week from the NEAS. This is what it says:

Dear Ms G

Thank you for your Christmas card in which you extend your thanks and appreciation to the staff of the North East Ambulance Service. Thank you for the kind words you say about the ambulance staff, I know they will appreciate your sentiments.

Can I also take this opportunity to thank you for taking the time to contact us. It is always very pleasing to receive such appreciations, as I am sure you are aware that we strive to provide the best possible service, however it is particularly reassuring to have that confirmed at first hand from someone with recent experience.

Yours sincerely

Paul Liversidge
DIRECTOR OF AMBULANCE OPERATIONS

It's ever so nice of them to write back to me, but I also find it quite sad that they obviously get so few letters of appreciation that they feel compelled to write back thanking me for mine ... a thank you for a thank you. Don't you think it says something about society and our taking the ambulance service (and I guess the fire service and police as well) for granted, that when one letter of thanks is sent, the Director of Ambulance Operations makes the time to reciprocate with his own letter of thanks?

So with this in mind, I set you all a task this week: Show your appreciation to someone for something they have done, something they have given you, or a service they provide. All the better if you do this more than once in the week. I'd love to hear what you do for this so feel free to leave a comment.

Neglect

I've neglected you all for the past 8 or 9 days. Sorry. I have no valid excuse. I could complain of tiredness and lethargy (which are actually being looked into by the docs as possible hypothyroidism, because there are also a number of other symptoms present associated with it), but that'd be boring. Er, really all I can say is sorry, so .... sorry.

Twelfth night

It's twelfth night and therefore officially the end of the festive season so all the decorations have to come down :o( Not that I had put any decorations up other than my cards on ribbons, because there didn't seem to be a great deal of point seeing as I was away for most of the festive period. However, this coming Saturday I'm having a (not) New Year's Eve party to celebrate it being (not) New Year's Eve. In other words, it's an excuse for a get together of friends and friends of friends as lots of people have been away and not had a chance to catch up with each other, and now the long slog through the rest of the dark, cold, winter days begins with nothing to look forward to until Easter. So you may not be aware of this, but it's actually still December and Saturday is the 41st of the month :oD I had meant to record the fireworks off the telly on 31st, but I forgot :o( so at midnight on Saturday we're going to have to make do with the bongs on Radio 4 ... though I might, if I remember and decide I can afford it, I might get a few fireworks to set off in the back lane. Tee hee. That'll confuse the neighbours ;o)

Other than taking down Christmas cards and decorations, what does one do on twelfth night? Well traditionally I don't do anything specific, except perhaps feel a bit sad about disassembling the festivities, but tonight I have been to the pantomime at Newcastle's Theatre Royal :o) It was Robinson Crusoe and the Caribbean Pirates and it was great fun, though perhaps rather risque for some of the young kids there. Most of it will have gone over their heads, but I'm not convinced that all of it will have done. Anyway, it was wonderful fun and the 3D effects they had were fantastic. It also tickled me that the friend I went with and I had no children with us - we were unashamedly there for ourselves without the security of a small child to pass off as our reason for going :o)

Going back a while, but keeping with the festive theme, I wanted to tell you about something that happened in the 12th December. A small group of us from church went carol singing around the streets near church. We weren't collecting money, just providing a bit of festive entertainment and reaching out into the community as a church to remind people what Christmas is really about. Although it was cold and damp, and later started to spit with the kind of rain that feels like needles on your skin, we all had a fun time and lots of people seemed to enjoy our efforts, with one or two even joining in themselves. When it got too chilly for us and we'd been out a while we went off to the vicarage to warm up with mulled wine and mince pies. Well, most people did, but seeing as either of those would've killed me (allergies) I gave them a miss and opted for a decaf tea instead, which eventually helped me to defrost. It was a lovely evening, with lots of fun, lots of festivity, lots of singing and a fair bit of dampness.

When I got home I was feeling all cheery and festively fuzzy inside. I needed some milk from the shop though so rather than going in and getting all cosy warm and then having to go back out into the stinging rain I went as soon as I got out of the car. Outside the shop was a young man sitting on the ground, wrapped in a worn out coat, getting very wet, obviously cold, and begging. This is a residential area, not the centre of town and I don't think I've ever seen anyone begging in the area before. He was leaning against the window at the far end of the Spar shop, but when he saw me heading towards the door he asked me if I could spare a few pence. The temptation with beggars is to ignore them, to bypass them without often without acknowledgement, but I couldn't do that. I couldn't brush aside those words of 'good will to all men' that I'd just been singing about. I couldn't pretend I hadn't seen him. I approached him and he told me that he needed to make £15 so that he could stay in the hostel over night, that he'd managed to scrape together the money the night before, but that when he'd got there they were full. He told me he'd then bought alcohol with yesterday's £15 to help block out the cold as he spent the night on the street. And therein lies the dilemma we face when someone begs you for money - do you give them the money in the hope that they will spend it on food, hot drinks, or a place to stay, rather than alcohol, or do you suspect that it'll go on booze so don't give them what they're asking for. It's a difficult call, and really who am I to say that someone who's sleeping rough and is freezing cold shouldn't do whatever it takes for them to get some rest, even if that means drinking themselves into a stupor, but at the end of the day I rarely do give money. I didn't give money to this young man either, and I still don't know if I did the right thing. However, when I was in the shop I noticed they were doing a two for one offer on those enormous bars of Dairy Milk. It wouldn't give nutrition, but it would give calories, and the young man on the street looked like he needed calories, so I bought him the chocolate. When I came out of the shop, he reached out his hand to me and said, 'I need a miracle. Please, can you help me?' Christmas is a time for miracles, but they're not something I've ever performed, or ever expect to be able to. I knelt down and said that I didn't have a miracle, but I did have some chocolate for him and I could pray for him and the miracle he needed if he wanted me to. This is something that I have never done before - prayed for a stranger in the street like that. It's not really me, but it was all I had to offer this desperate young man sitting on the ground in my community. I don't think I'd expected him to accept my offer of prayer, but he did, so I held his hand and quietly prayed with him for the miracle he needed of getting somewhere warm and dry to stay for the night, for longer than that one night, and for the chance to get his life back on track. Afterwards he was almost in tears. He clutched his big bars of chocolate and asked if he could hug me. Again, this is something that I've never done before - hugged a homeless person - and I wavered for a second or two, but it struck me that one of the things that this man needed was human touch, and something other than that given by the police as he's moved on from wet patch of pavement to wet patch of pavement. I hugged him and he cried and he thanked me and he hugged me some more. I felt inadequate, and I felt humbled by this man's simple acceptance of prayer and chocolate as my offering to him on such a cold, wet night when what he really needed was a warm bed. I wished that I could have offered him a place to stay, but I couldn't. After a few minutes I got up and came home, but as I passed by the door to the shop also passed one of the shop keepers who was looking at the young man with disdain, and then threatened to call the police to have him moved on. I was angry. He hadn't done anything wrong. He didn't have any place to move on to. There was a genuine desperation in his eyes and I had made the choice to talk to him - he hadn't forced me to, and he hadn't forced me to give him the chocolate. I was almost mute in my anger though, and all I could think to say was, 'You'll be closing up soon. He'll go then.'

I haven't seen him since, but I have thought about him a lot. There was something about him that stirred something in me. Maybe it was that he was in the middle of my local community, rather than in the impersonal city centre. Maybe it was the desperation in his eyes. Maybe it was the time of year - the approaching festivities and the fun evening of joyful carol singing that I'd just had. Maybe it was his plea for a miracle and my inability to provide one. You find God in the strangest of places and in the most unexpect of places and people, but there was something about this young man that suggested God's presence ...

I still pray for him. I still wish I'd been able to do something more for him. I do hope that he's okay.