A while back I mentioned that I had been diagnosed with Impaired Glucose Tolerance (IGT), which is basically pre-diabetes. The main blood test for diabetes has the not so catchy name of HbA1c, and basically measures the long-term (3 month) blood glucose level. This is in comparison to the finger-prick blood glucose level (BM) that is like a snap shot of what's going on at the precise moment that the test is done. There are various different levels of HbA1c that classify whether or not someone is non-diabetic, pre-diabetic, or has diabetes.
When I was first diagnosed with IGT my HbA1c was at the lower end of the spectrum for pre-diabetes, but it rose within three months to the upper end. During this time I was advised by my GP to check my BM at various times, but particularly when I felt unwell with my blood sugars. By doing this I've quickly learnt how I feel when my BM is high, or at least high for me.
When I was in hospital in July/August there were a number of times when I felt my blood sugars were going high, and when they checked them they were indeed high. At times they were the highest I've ever known them to be, and some of the staff (and myself) became concerned that perhaps I had crossed that threshold from pre-diabetes to diabetic. A few of the other staff thought that perhaps my BMs were going high in response to being ill, and that things would settle again once I got home. There seemed to be some confusion and some argument about what was the best way forward, with some wanting the diabetic team to get involved, whilst others didn't want to do anything. To be honest, I felt very stuck in the middle without much of a say of what was to happen. In the end the Diabetes Specialist Nurses (DSNs) were asked to come and see me, but for one reason or another they never actually materialised, and upon discharge one of the doctors said, 'You have a good GP. Hopefully he'll be able to tie up these loose ends.' It wasn't exactly ideal, but by then it was the only option I had, and the doctor was right - my GP is good.
I did as the doctor suggest and went to see my GP who suggested getting another HbA1c done. Sure enough, when the results came back it showed that I am now diabetic. I was expecting it, but for some reason it was still a lot to take in. I had thought that it might be a relief finally to know for sure, but it wasn't. However, I did think that now I had the diagnosis of diabetes then some action might be taken, that I might have access to helpful services that I couldn't use when I 'just' had IGT. It's true that I have seen the practice nurse with a special interest in diabetes at the GP surgery, and she has referred me to the podiatrist and specialist optician, and that I will be going on a DESMOND course (an education course for those recently diagnosed with diabetes). However, the earliest DESMOND course there are spaces for, and on which I'm booked, isn't until the middle of November, I won't get an appointment with the specialist optician until April, I haven't heard anything about the podiatrist, and although the GP practice nurse is lovely, she confessed that she doesn't know much about steroid-induced diabetes. Oh yes, that's the thing, the general consensus is that this isn't 'straight-forward' Type 2 diabetes, but steroid-induced diabetes. This isn't surprising given that I've been on long-term high-dose steroids for sixteen years ... in fact, it's more surprising that I haven't developed diabetes before now.
I hate steroids. I can't live without them, but they are wrecking my body. I've piled on the weight since I started on prednisolone; I've had cataracts in both eyes; it's reducing my bone density and making my vertebrae crumble; it's most likely contributed to the depression that I've suffered for years; it's probably to blame for the peptic ulcers I've had; it's reduced my immunity so I pick up infections easily; it may well contribute to the terrible water retention that I get; and many other minor side-effects that I have from it. The trouble is that if I don't take the steroids I can't breathe. Even trying to reduce them a little causes my lungs to start giving up, and I invariably end up really poorly, so I have no choice but to take the meds and take the side-effects too.
There are one or two medications, generally immunosuppressants, that can be taken to help reduce steroid doses - steroid sparing agents. One such medication is methotrexate, which in large doses is used in chemotherapy, but in smaller doses is sometimes used in rheumatoid arthritis or severe psoriasis. In a very few instances, in those dependant on steroids, it can be used in those with severe asthma. I have been on methotrexate before, several years ago, but after about a year and only getting my prednisolone down to 30mg, my consultant didn't think the risks were out-weighing the limited benefits. Like prednisolone, and most medications, methotrexate has some hard-core potential side-effects, such as pneumonitis/lung fibrosis and liver damage.
Given my recent diabetes diagnosis, my asthma consultant has been keen for me to start methotrexate again. This is a big turn around from the stance he took last time when he didn't really want me to start methotrexate in the first place, but was eventually willing to try. This time we discussed the options, and I soon came to realise that I don't actually have any option but to give it a go. There is no other way to try to reduce the prednisolone, and seeing as the prednisolone is almost definitely making the diabetes worse, I have to try the methotrexate.
I took the first dose of methotrexate just over two weeks ago (it's a once a week medication), and then, because of the potential it has to damage the liver and cause other problems, I had to have bloods done just over a week later. Nausea is a common side-effect of methotrexate, particularly at the beginning of treatment, and indeed I did feel very sick. I passed it off at first as something I'd just have to put up with, but then I started vomiting and couldn't keep any of my other meds down, so I ended up having to see my GP. She was concerned about the potential for liver damage, one of the symptoms of which is nausea and vomiting, so she advised that I didn't take the next dose of methotrexate until we got my blood test results back. She phoned me a few days later when she got the results, by which time I'd a couple of days of feeling a bit better because I'd missed the next dose of methotrexate. The upshot of the call was that the results show my liver isn't in great shape. It's not awful, but some of my liver results were out of normal range, so then my GP didn't want me to take the next dose of the meds until I'd spoken to my consultant. So many phone calls later trying to get through to my asthma consultant, I eventually got to speak to him and explain all. He said that he understood my GP's concern, and yes, my liver results weren't great, but given how much prednisolone is wrecking my body, methotrexate is my only chance to try to get the dose down. I was to take the next dose of methotrexate and have my bloods done again in a week, so I did as instructed and I have to go for my next lot of blood tests in the morning. I'll be taking the third dose of methotrexate before I go. Each time I take the meds it feels like I'm putting something really dangerous into my body - something that's going to damage me further. I know it's my only option. I know that a lot of people take methotrexate without problems. It's still not easy taking the meds, even if they are the only thing that might help with the diabetes at the moment.
The saying 'stuck between a rock and a hard place' feels very appropriate with all of this. Maybe especially so while I'm still on the high-dose prednisolone and we're titrating the methotrexate dose upwards, so I have the potential side-effects of both medications concurrently. I have to say, these aren't things that I ever thought I'd be having to consider or deal with just because of asthma. You never really imagine that one disease can lead directly to another simply because of the medication you have to take, and that those medications can have such a damaging effect on the body as well as saving your life. So confusing. So complicated.
Monday, 29 September 2014
Sunday, 14 September 2014
Longer than expected
When I wrote my last post I fully intended to write again very soon, but for one reason or another I haven't been able to. I've written my next post in my head several times, with it being different each time because of what's been going on at the time, but because of that I've also rather lost track of how long it is since I actually managed to post anything. At last I'm here, albeit two and a half months since my last posting.
So what's been going on for me? Well, it's been the summer and traditionally a time when folk go on holiday. I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week. I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's. I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots. She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant. She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'. I am completely besotted with Isobel and she's giving me so much pleasure and delight.
At the middle of July/beginning of August I spent two weeks in hospital with my asthma. I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday. I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August. In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North. I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill. I couldn't breathe and my chest felt incredibly tight. I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out. I knew that if I passed out then I would die. I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness. Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease. For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.' It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay? Should I go to hospital? Would I be alright if I went home?
When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done. I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day. In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.
It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way. Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink. And when I got home I was exhausted.
I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move. I tried to wake up, but I couldn't. My head didn't feel right. In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight. I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep. I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall. I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in. I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused. I said that I wasn't, that I was just tired, but actually I think I was confused. The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.
I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again. My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday. When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery. Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery. The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.
At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me. My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me. I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter. The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly. It all went pear-shaped and I ended up back on it very soon after it'd first come down. This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process. Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.
I was discharged two weeks after being admitted. The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell. These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.
Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes. I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.
There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you. Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather. So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.
So what's been going on for me? Well, it's been the summer and traditionally a time when folk go on holiday. I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week. I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's. I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots. She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant. She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'. I am completely besotted with Isobel and she's giving me so much pleasure and delight.
At the middle of July/beginning of August I spent two weeks in hospital with my asthma. I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday. I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August. In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North. I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill. I couldn't breathe and my chest felt incredibly tight. I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out. I knew that if I passed out then I would die. I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness. Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease. For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.' It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay? Should I go to hospital? Would I be alright if I went home?
When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done. I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day. In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.
It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way. Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink. And when I got home I was exhausted.
I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move. I tried to wake up, but I couldn't. My head didn't feel right. In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight. I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep. I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall. I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in. I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused. I said that I wasn't, that I was just tired, but actually I think I was confused. The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.
I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again. My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday. When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery. Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery. The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.
At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me. My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me. I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter. The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly. It all went pear-shaped and I ended up back on it very soon after it'd first come down. This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process. Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.
I was discharged two weeks after being admitted. The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell. These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.
Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes. I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.
There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you. Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather. So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.
Tuesday, 24 June 2014
Getting back to it
Well hello there, folks! Even the most unobservant of you will have noticed that it's a very long time indeed since I last posted, but now it's time that I got back to it, back to you.
It's been a difficult five months or so since my last blog post with two bouts of pneumonia (I told you there was no such thing as a simple cold for a severe asthmatic!); time in hospital; the death of a very long-standing and dear friend; the death of my beloved cat, Zach, who had been my loving (although crazy and psychotic) companion since he was four or five weeks old almost seventeen years ago; the diagnosis of Impaired Glucose Tolerance (IGT), or pre-diabetes, with a major contributory factor being the long-term high-dose oral steroids I take for my lungs; and still working through some of the stresses of last year, both in my own time and with my psychologist.
Is it any wonder I've needed a bit of space from writing about it all on my blog?
However, despite all of that there have been some good times and some good things in the last few months too. In recent weeks, one of the things that has helped to bring back my smile has been my new little kitten, Isobel Artemis. This photo was taken when she was just three to four weeks old and I went to meet her for the first time.
Isobel came to live with me on the day that she turned eight weeks old, and this photo is from her first evening with me.
As you can see, she'd grown a bit, but she was still so small (especially in comparison to the size my lovely Zach boy had been) that I kept looking at her and thinking, 'You're so small, you can't be real!' She was quite unsure of her new surroundings for a couple of days, although she seemed to feel safe enough, judging by how relaxed she was first thing in the morning of her first full day...
She's now completely settled in, a complete delight, and totally nuts :o) Her mother was half Bengal, which of course makes Isobel a quarter Bengal. She has some of the traits, particularly being talkative with a variety of little chirrups as well as the more conventional meows and purrs; and she has just a couple of the Bengal spots on her side; but I wasn't sure how many of the other traits she'd have. One thing Bengal cats are known for is a liking of water, and yesterday Isobel had her first encounter with water. It was the middle of the afternoon and she decided it was cuddle time, which is lovely and usually not a problem, except that I happened to be in the bath at the time! Despite having her feet already immersed in the bath water, she walked along my legs into deeper water (my legs were at a slight angle due to the bath lift I use), patted it with her paw as if gently attacking it, walked back up my legs, looked at me quizzically, leapt out of the bath, ran around the flat in crazy mode, scurried back into the bathroom, leapt back into the bath, missed her footing on me and got absolutely drenched. She ended up very spiky, utterly bemused, extremely soggy, and yet wanting more. I don't really want to end up sharing all my baths with the cat from now on - that would be weird! - but it was very amusing, and I have to say that she's incredibly silky soft today.
I could probably post photos of Isobel ad infinitum, but I'll restrain myself (for now) and tell you some more of the better things that have been going on for me in recent times.
So, at the end of April my mum turned seventy, shortly followed by my step-dad at the beginning of this month, so between the two birthdays we had a family week away in celebration. Mum, J (step-dad), my brother M, his wife, N, and their children, O and D, and my brother C, his wife, S, and their son, J, hired a 'cottage' in Shropshire. The 'cottage' was in the grounds of a manor house with several other 'cottages' (mostly far too big to be called cottages), and amongst other things a huge building that contained a large games room and banqueting hall. We'd arrived on the Friday, and on the Sunday we had a big party for Mum and J in the banqueting hall with various other factions of the family coming to join us for the day. Most of the folk who came to the party were from J's side of the family, and it was great to have a chance to meet some of them for the first time, some for the first time since Mum and J got married over twenty years ago, and to chat to others who I have seen more recently but haven't had the opportunity for a good catch-up.
There are always some tensions when families get together for prolonged periods, but on the whole I don't think we did too badly, and I did have a good time. There were times when I felt a bit 'spare part-ish' and lonely, because I was the only one who didn't have someone else, and a couple of days when I ended up spending much of the day on my own while others went off in their family groups, but I tried to make the most of it, and did have some good times. I also had some very enjoyable times with my brothers and their families during trips out, and I really valued the time to get to know my youngest nephew, J, a bit better. I don't get to see him very much, so even at age three, he didn't really know who I was, but by the end of the week he was inviting me to his next birthday party ... in February next year. I do hope I get to see him (and his parents, of course!) rather more now and we can have the kind of aunty-nephew relationship I have with O and D.
What else has been good? Well, I've been learning to crochet. In my review of the year at the end of last year, and I think also at the end of the previous year, I said that I wanted to learn to crochet. I sort of learnt a little bit in 2012, but not at all confidently, and I couldn't do it with any accuracy without having someone who knew what they were doing to guide me. Earlier this year my friend R was off work for a few weeks. Early on in her recovery from the surgery she had I went to visit her and happened to mention that I wanted to learn to crochet, and much to my delight she said that she did to and we set up a plan to learn together. I'd bought a book (A Little Course in Crochet) a few weeks before in anticipation of teaching myself and we decided to use it as our tutor. We met up frequently during R's recuperation, working methodically through the book, and practising on our own between times. We still haven't reached the end of the book, and R is now back at work, but I feel like I can call myself a crocheter. I can actually make things, things with straight edges where they're meant to be straight, and with corners where there are meant to be corners. I've made all sorts of things, albeit mainly those in the book, but that's the beauty of the book, because it teaches you a skill and then gives you a project to make using the skill it's just taught. R and I don't meet now like we did, but I'm still crocheting, I think she is too, and we certainly plan to get together for more creative crocheting times. It's so relaxing, and actually it really helped me after Zach died.
So having heard what has been, I guess I should say a little about what is. Right at the moment my priority is trying to keep breathing. The weather has been lovely recently with lots of sunshine, but the air has been thick with humidity - around 60% to 75% according to the Met Office - and that's been causing me problems. That and the high pollen count. As much as I love going out in the sunshine - and I really need to get the vitamin D given my osteomalacia - I've had to spend a fair amount of this lovely weather indoors, breathing the clearer air produced by the ventilation system in my flat. Even then I've had some very troublesome days and nights with my breathing, and have generally been quite exhausted. I've put my steroids back up from 45mg to 60mg, and have been having extra nebs, but I'm also thankfully due to see my asthma consultant on Thursday. I don't expect him to have any magic answers or even the glimpse of any new treatment, but at least he'll know where things are up to.
To be honest, it hasn't been too much of a hardship having to be inside at home. Sure, I'd love to be outside enjoying the sun and the warmth, but I've also spent lots of time with Isobel and have been taking great delight in her. We've played a lot, had lots of cuddles, and she's been learning the word no when she's looked up at the curtains with rather too much interest ;o)
I think that I'd better sign off for now as it's getting late, but I'll be back a whole lot sooner than I was last time.
It's been a difficult five months or so since my last blog post with two bouts of pneumonia (I told you there was no such thing as a simple cold for a severe asthmatic!); time in hospital; the death of a very long-standing and dear friend; the death of my beloved cat, Zach, who had been my loving (although crazy and psychotic) companion since he was four or five weeks old almost seventeen years ago; the diagnosis of Impaired Glucose Tolerance (IGT), or pre-diabetes, with a major contributory factor being the long-term high-dose oral steroids I take for my lungs; and still working through some of the stresses of last year, both in my own time and with my psychologist.
Is it any wonder I've needed a bit of space from writing about it all on my blog?
However, despite all of that there have been some good times and some good things in the last few months too. In recent weeks, one of the things that has helped to bring back my smile has been my new little kitten, Isobel Artemis. This photo was taken when she was just three to four weeks old and I went to meet her for the first time.
Isobel came to live with me on the day that she turned eight weeks old, and this photo is from her first evening with me.
As you can see, she'd grown a bit, but she was still so small (especially in comparison to the size my lovely Zach boy had been) that I kept looking at her and thinking, 'You're so small, you can't be real!' She was quite unsure of her new surroundings for a couple of days, although she seemed to feel safe enough, judging by how relaxed she was first thing in the morning of her first full day...
She's now completely settled in, a complete delight, and totally nuts :o) Her mother was half Bengal, which of course makes Isobel a quarter Bengal. She has some of the traits, particularly being talkative with a variety of little chirrups as well as the more conventional meows and purrs; and she has just a couple of the Bengal spots on her side; but I wasn't sure how many of the other traits she'd have. One thing Bengal cats are known for is a liking of water, and yesterday Isobel had her first encounter with water. It was the middle of the afternoon and she decided it was cuddle time, which is lovely and usually not a problem, except that I happened to be in the bath at the time! Despite having her feet already immersed in the bath water, she walked along my legs into deeper water (my legs were at a slight angle due to the bath lift I use), patted it with her paw as if gently attacking it, walked back up my legs, looked at me quizzically, leapt out of the bath, ran around the flat in crazy mode, scurried back into the bathroom, leapt back into the bath, missed her footing on me and got absolutely drenched. She ended up very spiky, utterly bemused, extremely soggy, and yet wanting more. I don't really want to end up sharing all my baths with the cat from now on - that would be weird! - but it was very amusing, and I have to say that she's incredibly silky soft today.
I could probably post photos of Isobel ad infinitum, but I'll restrain myself (for now) and tell you some more of the better things that have been going on for me in recent times.
So, at the end of April my mum turned seventy, shortly followed by my step-dad at the beginning of this month, so between the two birthdays we had a family week away in celebration. Mum, J (step-dad), my brother M, his wife, N, and their children, O and D, and my brother C, his wife, S, and their son, J, hired a 'cottage' in Shropshire. The 'cottage' was in the grounds of a manor house with several other 'cottages' (mostly far too big to be called cottages), and amongst other things a huge building that contained a large games room and banqueting hall. We'd arrived on the Friday, and on the Sunday we had a big party for Mum and J in the banqueting hall with various other factions of the family coming to join us for the day. Most of the folk who came to the party were from J's side of the family, and it was great to have a chance to meet some of them for the first time, some for the first time since Mum and J got married over twenty years ago, and to chat to others who I have seen more recently but haven't had the opportunity for a good catch-up.
There are always some tensions when families get together for prolonged periods, but on the whole I don't think we did too badly, and I did have a good time. There were times when I felt a bit 'spare part-ish' and lonely, because I was the only one who didn't have someone else, and a couple of days when I ended up spending much of the day on my own while others went off in their family groups, but I tried to make the most of it, and did have some good times. I also had some very enjoyable times with my brothers and their families during trips out, and I really valued the time to get to know my youngest nephew, J, a bit better. I don't get to see him very much, so even at age three, he didn't really know who I was, but by the end of the week he was inviting me to his next birthday party ... in February next year. I do hope I get to see him (and his parents, of course!) rather more now and we can have the kind of aunty-nephew relationship I have with O and D.
What else has been good? Well, I've been learning to crochet. In my review of the year at the end of last year, and I think also at the end of the previous year, I said that I wanted to learn to crochet. I sort of learnt a little bit in 2012, but not at all confidently, and I couldn't do it with any accuracy without having someone who knew what they were doing to guide me. Earlier this year my friend R was off work for a few weeks. Early on in her recovery from the surgery she had I went to visit her and happened to mention that I wanted to learn to crochet, and much to my delight she said that she did to and we set up a plan to learn together. I'd bought a book (A Little Course in Crochet) a few weeks before in anticipation of teaching myself and we decided to use it as our tutor. We met up frequently during R's recuperation, working methodically through the book, and practising on our own between times. We still haven't reached the end of the book, and R is now back at work, but I feel like I can call myself a crocheter. I can actually make things, things with straight edges where they're meant to be straight, and with corners where there are meant to be corners. I've made all sorts of things, albeit mainly those in the book, but that's the beauty of the book, because it teaches you a skill and then gives you a project to make using the skill it's just taught. R and I don't meet now like we did, but I'm still crocheting, I think she is too, and we certainly plan to get together for more creative crocheting times. It's so relaxing, and actually it really helped me after Zach died.
So having heard what has been, I guess I should say a little about what is. Right at the moment my priority is trying to keep breathing. The weather has been lovely recently with lots of sunshine, but the air has been thick with humidity - around 60% to 75% according to the Met Office - and that's been causing me problems. That and the high pollen count. As much as I love going out in the sunshine - and I really need to get the vitamin D given my osteomalacia - I've had to spend a fair amount of this lovely weather indoors, breathing the clearer air produced by the ventilation system in my flat. Even then I've had some very troublesome days and nights with my breathing, and have generally been quite exhausted. I've put my steroids back up from 45mg to 60mg, and have been having extra nebs, but I'm also thankfully due to see my asthma consultant on Thursday. I don't expect him to have any magic answers or even the glimpse of any new treatment, but at least he'll know where things are up to.
To be honest, it hasn't been too much of a hardship having to be inside at home. Sure, I'd love to be outside enjoying the sun and the warmth, but I've also spent lots of time with Isobel and have been taking great delight in her. We've played a lot, had lots of cuddles, and she's been learning the word no when she's looked up at the curtains with rather too much interest ;o)
I think that I'd better sign off for now as it's getting late, but I'll be back a whole lot sooner than I was last time.
Sunday, 5 January 2014
Lurgies
It's a brand new year, and just as it gets going I have a brand new lurgy. It's a viral thing. You might be thinking, as part of me does, 'So what? Almost everyone picks up some bug or other during the winter months,' and that's true, but the problem is that, for a brittle asthmatic like myself, there is no such thing as a simple infection.
At the moment I don't feel too bad most of the time - a little bit sniffly, the edge of a headache, a slight sore throat, etc - except that, aside from those niggly things, I also have scratchy lungs and a barking cough. The cough is tiring and it's beginning to make my lungs ache, and the worry with that feeling is that it's all too common when an upper respiratory tract infection is making its way south to become a lower respiratory tract infection. And the trouble with that is that it will set off the asthma.
For most, a cold or a bit of viral bug is annoying and bit miserable, but you know you'll be back to normal after ten days or so. My worry is that this could land me in hospital. In fact, I've all to often ended up in Intensive Care on a ventilator because I've picked up a 'simple' cold. Of course, there's the possibility - albeit limited - that I might get over this without any drama, and that is exactly what I want to happen, of course. But the other possibility scares me. Having a bit of a viral infection scares me. I know that it could all go horribly, horribly wrong, and that it could end up putting my life in danger.
Mum's still with me at the moment - still here from her stay for New Year. I have the appointment for the MRI on my back/spine first thing in the morning, and she's coming with me to that, but then she and J are going back home to Scotland. It shouldn't make much of a difference, seeing as I'm almost 40, but actually it does, because while they are here they can (and do) make sure that I'm okay. That's not to say that I can't look after myself - of course I can - but everyone knows that it's easier to have someone help look after them when they're under the weather. More significantly, should my lungs have a big splat while Mum is here then I know that she can easily summon help quickly. It's not quite so straight forward when I'm on my own again - if I haven't got the breath to speak clearly to ambulance control; if I lose the ability to judge how ill I'm becoming (which does have a tendency to happen due to a build up of carbon dioxide in my blood when my lungs get bad); if I push myself that little bit too far in trying to maintain my independence, which might be as little as trying to walk through to the kitchen to make a cup of tea, or through to the bathroom to use the toilet.
Then there are night times, those dreaded times when lungs have a habit of deteriorating and GP surgeries are closed. Now, in my cogent head I know that in an emergency I should call an ambulance, and that ambulances exist throughout the night as well as the daytime. But the trouble, once again, is that muddled brain that I get when my lungs go into that dangerous slip, and I forget about ambulances. I forget about other portals of help. I worry that I will wake a friend from needed sleep, rather than thinking that they'd much rather be tired the next day having been woken by me to help me get the right help, than to later find out that I've died from an exacerbation of asthma. My CO2-muddled brain worries about getting my health record info and my meds list up to date in the event that I might need to go to hospital, but it doesn't always register that I should be going to hospital there and then, rather than faffing around with paperwork. My CO2-muddled brain thinks about making sure that there's everything in my hospital case that I need, not about getting to hospital itself. My CO2-muddled brain is a dangerous brain to have, probably because it's in danger, and it's that CO2-muddled brain - the possibility of it - that scares me now.
Of course, of course, of course I know that it might not happen this time. I hope to God that it doesn't, but I can't trust that it won't, and that uncertainty is frightening too. And then there's the thought that it might all drag on, and I'll get more and more tired and weary, and then I won't have the energy to fight if I need to. The possibility of a long, slow slip downwards is frightening. The possibility of a long, hard fight at the end of that is even more frightening.
I have home antibiotics if I need them, but there's no point in taking them at the moment while it's almost certainly viral. I won't take them unless I need them. I'm keeping an eye of signs of an antibiotic-worthy infection, but so far there's none. I just cough, and I feel the heaviness in the top of my chest, hear the gentle wheeze and the edge of an occasional crackle, feel the scratchiness in my throat, and take the meds I can to alleviate what is possible to alleviate. No relief lasts long, but I'm thankful that at the moment I'm not in crisis, and I hope that it stays that way throughout.
All this from a bit of a lurgy. It scares me, and I wonder how much people understand about why my fears are real, and why they're not an over-reaction to a 'simple' viral bug. And I wonder how much people understand why, at times like this, living on my own is a frightening thing, and why it means quite so much that my mum's going home tomorrow. Perhaps it shouldn't matter what others understand ... but for some reason it does.
At the moment I don't feel too bad most of the time - a little bit sniffly, the edge of a headache, a slight sore throat, etc - except that, aside from those niggly things, I also have scratchy lungs and a barking cough. The cough is tiring and it's beginning to make my lungs ache, and the worry with that feeling is that it's all too common when an upper respiratory tract infection is making its way south to become a lower respiratory tract infection. And the trouble with that is that it will set off the asthma.
For most, a cold or a bit of viral bug is annoying and bit miserable, but you know you'll be back to normal after ten days or so. My worry is that this could land me in hospital. In fact, I've all to often ended up in Intensive Care on a ventilator because I've picked up a 'simple' cold. Of course, there's the possibility - albeit limited - that I might get over this without any drama, and that is exactly what I want to happen, of course. But the other possibility scares me. Having a bit of a viral infection scares me. I know that it could all go horribly, horribly wrong, and that it could end up putting my life in danger.
Mum's still with me at the moment - still here from her stay for New Year. I have the appointment for the MRI on my back/spine first thing in the morning, and she's coming with me to that, but then she and J are going back home to Scotland. It shouldn't make much of a difference, seeing as I'm almost 40, but actually it does, because while they are here they can (and do) make sure that I'm okay. That's not to say that I can't look after myself - of course I can - but everyone knows that it's easier to have someone help look after them when they're under the weather. More significantly, should my lungs have a big splat while Mum is here then I know that she can easily summon help quickly. It's not quite so straight forward when I'm on my own again - if I haven't got the breath to speak clearly to ambulance control; if I lose the ability to judge how ill I'm becoming (which does have a tendency to happen due to a build up of carbon dioxide in my blood when my lungs get bad); if I push myself that little bit too far in trying to maintain my independence, which might be as little as trying to walk through to the kitchen to make a cup of tea, or through to the bathroom to use the toilet.
Then there are night times, those dreaded times when lungs have a habit of deteriorating and GP surgeries are closed. Now, in my cogent head I know that in an emergency I should call an ambulance, and that ambulances exist throughout the night as well as the daytime. But the trouble, once again, is that muddled brain that I get when my lungs go into that dangerous slip, and I forget about ambulances. I forget about other portals of help. I worry that I will wake a friend from needed sleep, rather than thinking that they'd much rather be tired the next day having been woken by me to help me get the right help, than to later find out that I've died from an exacerbation of asthma. My CO2-muddled brain worries about getting my health record info and my meds list up to date in the event that I might need to go to hospital, but it doesn't always register that I should be going to hospital there and then, rather than faffing around with paperwork. My CO2-muddled brain thinks about making sure that there's everything in my hospital case that I need, not about getting to hospital itself. My CO2-muddled brain is a dangerous brain to have, probably because it's in danger, and it's that CO2-muddled brain - the possibility of it - that scares me now.
Of course, of course, of course I know that it might not happen this time. I hope to God that it doesn't, but I can't trust that it won't, and that uncertainty is frightening too. And then there's the thought that it might all drag on, and I'll get more and more tired and weary, and then I won't have the energy to fight if I need to. The possibility of a long, slow slip downwards is frightening. The possibility of a long, hard fight at the end of that is even more frightening.
I have home antibiotics if I need them, but there's no point in taking them at the moment while it's almost certainly viral. I won't take them unless I need them. I'm keeping an eye of signs of an antibiotic-worthy infection, but so far there's none. I just cough, and I feel the heaviness in the top of my chest, hear the gentle wheeze and the edge of an occasional crackle, feel the scratchiness in my throat, and take the meds I can to alleviate what is possible to alleviate. No relief lasts long, but I'm thankful that at the moment I'm not in crisis, and I hope that it stays that way throughout.
All this from a bit of a lurgy. It scares me, and I wonder how much people understand about why my fears are real, and why they're not an over-reaction to a 'simple' viral bug. And I wonder how much people understand why, at times like this, living on my own is a frightening thing, and why it means quite so much that my mum's going home tomorrow. Perhaps it shouldn't matter what others understand ... but for some reason it does.
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