Telling it as it is

My consultant came to see me on Monday morning and I decided to tell him how the relentlessness of my asthma has worn me to the core. I wanted to be clear that this isn't due to depression or is only about this immediate situation. I wanted to try to convey that I feel as I do because of the years of breathing difficulties, the incessant attacks, the repeated infections, and the lack of proper recovery between hospital admissions. This isn't just about my current situation. There was a time when things weren't quite so relentless, and I was younger so perhaps I had more stamina, but now I get no relief and there always seem to be something, some health difficulty, causing a problem. I don't have the energy any more.

The problem is that I want to live. I was apprehensive telling my consultant all this and actually saying, 'I can't live like this any more,' because I didn't want him to think that I'm suicidal. I'm not. If anything this is the opposite of being suicidal. I want to have a life beyond my disease, to have energy for living and doing things, for there to be more to 'life' than hospital appointments. I do try to get out and do things, to make the most of what I can when I can, but life has shrunk and asthma and illness have taken over far too much.

I'm not just feeling sorry for myself, although yes, perhaps there is a small aspect of that in there too. However, the overriding thing is needing more to life than I now have, and needing some improvement in my health to have that. All aspects of my being - physical, emotional, spiritual - are depleated, having had chunks ripped from them by the endless battle to breathe, with infection, with side effects from medications. At times I feel as though there is nothing left to me except illness and disease.

So I told Dr H all this, and I told him that I can't live like this any more, and he went very quiet, and he looked the saddest I have ever seen him. For a moment I felt guilty for inducing that sadness, but it was also good because it meant he understood, and he did understand. After a few moments of silence he slowly came back and then said, 'But you know that I don't have anything more to give you.' I do know, and that is the problem. It's not his fault, it's just that I'm at the end of the treatment line and have been for a long time. There had been the possibility of a new drug - mepolizumab - specifically developed for people with severe refractory asthma, but earlier in the year NICE (National Institute for Care Excellence) refused to approve it, seemingly largely on the grounds that it's too expensive and will benefit too few people. Dr H and a cohort of other specialists in difficult asthma submitted an appeal, the results of which are expected sometime in June, but Dr H has also told me that even if NICE approve mepolizumab this time I may well still be precluded from having it because my steroid dose is so high.

Dr H has been my consultant for twenty two years, during which time we have tried practically every medication there is. Still my asthma has deteriorated and I've been dependent on high dose oral steroids (prednisolone) for something like eighteen years. My current dose is 60mg and this is a reduction from the 80mg I was on six weeks ago. Steroids keep me alive, but they are also destroying my body in lots of ways too.

On Monday morning Dr H asked me if we'd ever tried a different steroid. We haven't. He said that in theory there should be no difference in therapeutic effect between steroids, but actually he has seen one steroid in particular - triamcinolone - have very good effect in some people who previously got little benefit from prednisolone. It is an old medication and, as far as I'm led to believe, it isn't used much in asthma. It used to be available as an inhaler, but Dr H was talking about it in its injectable form. It's given as a four-weekly injection into deep muscle where it is slowly released over time. It has been used in some where there's been question about their adherence in taking medication, but that's not the issue with me. The issue with me is how well I am absorbing the prednisolone and how well my body is utilising it. There's no question that I am absorbing some of it, because if I weren't I wouldn't have the side effects I do (most notably these days the diabetes), but to how much positive use is my body putting the prednisolone?

So this question of trying triamcinolone has arisen. I have talked about it with J, the Complex Lung Disease Nurse. I've asked friends who have severe refractory and/or brittle asrhma if they have experience of it and talked with those who do. J introduced me to another patient who's been on it for seven months with good effect and I was able to ask her questions about the pros and cons (for her there have been no cons!). I have read the patient information leaflet about it that J gave me. I've read various articles about it online. I want to try it. I'm aware that it may have no effect, but it has no chance of having any positive effect if we don't try it. I'm also aware that it may cause more problems with my diabetes, but I think/hope this could be dealt with in collaboration between Dr H and my diabetologist/endocrinologist, which is something I have put to J.

I hardly dare hope that there might be the possibility of some improvement in my health.

After my conversations with Dr H, J, and the patient to whom I was introduced, I haven't been sure if the triamcinolone is something that has been offered to try or merely suggested as a possible maybe. I needed to clarify this so I emailed J and he responded, 'I'm game if you are.' I am. I want this opportunity with all my being. Dr H has been away since after he saw me on Monday morning so there hasn't been any chance to talk about it further or for J to discuss it with him either. But he's back now and will be doing his ward round later today. J said he'll talk to him, and I'm sure they will both talk to me too. Dr H is always much more amenable to ideas if he comes to believe that they were always his (and maybe this was, but from something that J said to me I'm also not sure that it wasn't originally J's idea), and J knows him so well that he's excellent at achieving this. The final decision lies with Dr H, but I have a strong chance of being allowed this possibility of a little bit of hope with J on my side.

It's a frightening thing to let myself hope for this because I want it so much that I'll be crushed if it's taken from me. I am desperate for an opportunity to live again. I may find out if that opportunity is to be allowed within the next few hours.

Going back

Way back in September, when I was in hospital in Cambridge, it was found that my IgG levels were really low. IgG is immunoglobulin G and is to do with long-term immunity to infection, though is also a marker for other things. Not long before this I had been taking the drug methotrexate to try to get my dose of steroids down, but methotrexate is also an immunosuppressant (in high doses it it used to treat some forms of cancer), so while my low IgG were significant the doctors weren't overly concerned as it could have been a hangover from the methotrexate.  The medics at Addenbrooke's said to wait three months and then have my IgG levels checked again, by which time the methotrexate would be completely out of my system and we could be sure that it wasn't affecting the blood results.

During the three months between September and December I had a huge number of infections, mainly urinary tract infections (UTIs), but these are quite common in folk with diabetes and this time coincided with a worsening of my diabetes. For those three months I was almost constantly on antibiotics for UTIs, and extremely symptomatic of hyperglycaemia (high blood glucose levels), ending up in A&E on a number of occasions with very high BGs (blood glucose). My GP eventually referred me to the diabetes centre to gain better control of my diabetes again, and the diabetologist explained that steroid induced diabetes like mine almost always requires insulin injections for control. I was started on a low dose of a mix of fast acting and long acting insulin in early December, and over the next couple of months the specialist diabetes nurses titrated the dose, alongside the metformin tablets I take, so that we got fairly good control of my BGs. With improved BGs I also had fewer UTIs.

Shortly before Christmas I had those repeat blood tests done to check my IgG levels, obviously hoping they'd come back fine, but they didn't. My IgG levels were still very low so my GP contacted the haematology and immunology departments at the hospital for advice. Immunology wanted haematology to take the initial lead, and haematology suggested a wider screening of some of my other immunoglobulins. I had to wait a good couple of weeks for these results to come through, and in the end they didn't appear to be all that useful because haematology then requested a particular urine test be done to check for something (light chain proteins) that could indicate myeloma - an incurable blood cancer. As you can imagine, this was an anxious wait, but again not a very fruitful one. Yes, the result came back two weeks later as negative, but it then transpired that the urine test isn't very accurate and has a relatively high incidence of false negative results. Haematology requested another test for light chain proteins, this time in a blood test that is much more accurate. Another anxious two weeks passed by and I was eventually given the all clear for myeloma.

In light of the haematology tests, my GP contacted immunology again for their advice on my low IgG levels. They requested an official referral, which my GP promptly did and I quickly got an appointment through the post, although the appointment itself isn't until mud August! In the meantime they also requested my GP do some further blood tests to check my antibody levels for three specific infections - tetanus, pneumococcal, and haemophilus. In the past I have been immunised again both of the former and have had several haemophilus infections, so I ought to have antibodies for all three. We got the results two weeks after the tests were done and they showed antibodies only for tetanus. Immunology told my GP to revaccinate me against pneumococcal and haemophilus, wait five weeks and then check my antibody levels again. If the antibody cover is incomplete then this may well indicate an immunodeficiency disease.

I had the vaccinations seven weeks ago, and I've had the repeat blood tests to check my antibody levels again, but I am still waiting for those results. I'm not terribly hopeful that the vaccinations have taken because when I was in hospital in Newcastle just three weeks ago I was found to have an haemophilus infection.

Doctors now seem to think it is highly likely that I have an immunodeficiency disease, but of course it can't be confirmed until a) I get these blood results, and b) see the immunologist in August. In the meantime I have been getting lots of infections and 'reacting' badly to them, again suggesting the likelihood of an immunodeficiency disease, and it's been mooted that I may have had it all my life and it's contributed to my worsening asthma.

My doctors have all said that given my response to infection, and in light of my very low IgG, I ought to be seen urgently by the immunologist, but there is a national shortage of immunologists and the department is chock-a-block. I have tried, my complex lung disease nurse has tried, my GP has tried, my consultant has tried to get my appointment brought forward, but the department can't do so unless there is a cancellation, and in that instance it's first come first served - the patient/the patient's medical advocate has to contact them at the right time by luck rather than the department contacting those needing earlier appointments. I think this is simply because they are so busy, but it is far from ideal. My complex lung disease nurse (J) said to wait until I have the results of the revaccination antibody tests then contact him and he will try again for me at getting my August appointment brought forward.

I spoke to my GP on the phone last week about some other blood test results and he said he would phone me again in a week's time with the results of my revaccination antibody tests. I was expecting that call today, but it didn't come. I don't know if perhaps he was too busy, or if the results haven't come through. Perhaps he knows that I'm in hospital in Edinburgh at the moment so didn't want to bother me. I may contact the surgery tomorrow to find out. In many ways knowing the results at this stage of things doesn't change anything as no treatment will be given until I see the immunologist (and probably have a load more tests done too), but I still want to know. It feels very significant, especially on the back of these two hospital admissions in close succession due to asthma exacerbated by pneumonias initiated from colds. Both my mum and step-dad got this latest cold from me (sorry Mum and J), and they both said that for 'normal' people it was a very mild affair that was a slight annoyance for three days. I had four days in Intensive Care and I'm still on an aminophylline infusion with lots of wheeze.

Review of the year 2015

It's far too long since I last posted, and I left you all in a bit of limbo.  Sorry about that.  I'll come back to what happened with the rest of my Cambridge admission, and some of what has happened since, but it's a bit complicated to integrate into this post.

2015 was a difficult year in many, many ways with an awful lot of ill-health, but I will let my Review of the Year questions tell a bit more of the story - the ups and downs...

1. What has been your biggest achievement this year?
Probably getting onto the Patient Input Platform (PIP) for the RASP (UK) study into severe asthma.  I was asked to apply for a position on the PIP, but there was definitely no guarantee that I was would be successful and still had to fill in the application form (2000 words required) and be interviewed by someone from Asthma UK and someone already on the PIP.

2. What made you laugh most this year?
I think it was during a day of geocaching that I had with a my friend Ruth up at Bamburgh and Holy Island.  We had lots of fun and a huge amount of silliness, especially when it came to finding our last cache of the day, 'Cache and 'Tache' 

The biggest laughs were as we kept the 'taches on and made our way back to the car, but ended up causing some passers-by to stop their car and chat to us because they were laughing at us so much.

3. What unfulfilled hopes do you have for the past year?
I hardly wrote anything during 2015, either on my blog or otherwise, and I had been hoping to write a fair bit for both my book about my asthma and also my children's book.  I know this is a direct result of how difficult the year has been so I'm trying not to be too disappointed in myself.

4. What has been your favourite/most listened to piece of music this year?
There's a Peter, Paul, and Mary song we do at choir (Flotsam) called 'Jane Jane' that I absolutely love singing.  I particularly love the arrangement that we do (arranged by the MD, Andrew Scott - Scottee), but I have listened to the original version a lot too.

I have also listened to a lot of Bellowhead CDs both in the car and at home.  They're so enlivening, and I've needed a lot of that this past year.

5. What was your best holiday this year?
Well, as you know, my holiday didn't go as planned, but I did have an absolutely fantastic time in Wales before it all turned disastrous in Cambridge, so I will answer this with the Welsh part of my holiday.

6. What new skill, if any, have you acquired this year?
I don't think that I've actually acquired a new skill this year, but I have developed my crocheting skills, and crochet, of course, was my new skill for 2014.

7. What's the best book you've read this year?
My answer to this goes hand in hand with my answer to question two.  One of the things I need to be able to do to write is to be able to read, but I've hardly been able to read at all this year either.  My concentration for reading has been shot this year, partly because of events - particularly those early in the year - but also because of illness.  My diabetes has developed a lot over the past several months and has made me feel terrible, as well as affecting concentration.  Anyway, as a consequence, for the first time probably in my entire life, I have only read one book this year, and that book wasn't at all taxing.  It was Danny Wallace's 'Random Acts of Kindness'.  I am ashamed of this awful tally, although I know that like the writing, it is a symptom of my state of mind.  I am currently trying to adhere to a kind of reading programme agreed with my psychologist so that I can read a book that she is keen for me to read.  I am looking forward to being able to read again.

8. What has been the biggest challenge of this year?
My health.  It is always a challenge, but there have been more challenges this year, particularly with the development/worsening/instability of my diabetes.  I have also had a huge number of infections that have required something like thirteen or fourteen courses of antibiotics throughout the year.

9. What is your happiest/fondest memory of this year?
I have two that are of particular note.  The first was a moment with my younger brother, C, that I can't fully explain.  It was in the couple of days I had in Cambridgeshire after my Addenbrooke's hospital admission, and in my brother's back garden.  I can't really describe the moment adequately, but it was a moment of closeness with him ... a unity and togetherness.

The second happy memory was an afternoon I had a couple of weeks ago with my nephews O and D.  My brother, M, and his two children were visiting from London, primarily so that M could sort a few things around Dad's will/belongings.  He only had one full day to do this so I offered to look after the boys for the afternoon on that day.  I took them first to Vincenzos for lunch - they're big fans of pizza and have been to Vincenzos lots of time before with me and my brother, and in the past with Dad too.  After that we went to the Centre for Life where they had a brilliant time for the next four hours!  I hardly ever get to have my nephews to myself like this so it was a very special day for me, and I know that the boys enjoyed it too.  M had given O their emergency mobile so he could call if anything went wrong with me (health wise), and also if he just wanted to call.  O decided he did want to call his daddy while we sitting in the planetarium just so he could tell him what an excellent time he was having, and that he was very excited that he was about to watch a film about something called Hubble 25.  I had explained that Hubble is a big telescope and camera in space and it's been up there for 25 years, all of which really grabbed O's interest.

10. Of what one creation of the past year are you most proud or pleased?
Hmm, this is tricky as I've made a few things that I've been really pleased with, but I guess one of the things that I was very pleased with was a Christmas present I made for my friend R - some planter labels I painted on small wooden spoons.

This isn't the best photo, but it's the only photo I have of them, and it was taken before they were varnished.  Mind you, the varnish was satin so it didn't make them particularly shiny.  It was more for protection of the paint than anything else.

11. What new hobby did you take up/old hobby did you reinstate this year?
I don't think I did take up a new hobby this year, and I didn't really reinstate an old hobby either.  However, there was quite a time over the summer and early autumn that I didn't do much crochet other than the blanket I've been working.  I started a 3-6-5 blanket on 1st January 2015, doing one hexagon a day every day of the year.  With times in hospital and other times of being ill at home I got very, very behind at points, and although I eventually managed to catch up with making the hexagons it took me until sometime in October (I think) to catch up with attaching all those hexagons onto the blanket.  I did manage to catch up, and I actually finished making and attaching the last hexagon at 11.30pm on 31st December 2015, and that was including the few extra hexagons that I had to do to make the blanket a finished shape.  I've spent a fair bit of today working on the border/edging of the blanket, but think I ought to finish it completely over the weekend :)

12. What one thing would you really like to do next year?
There are a few things I can answer to this.  First, I'd like to write more ... write something.  Second, I'd like to lose weight and get a bit fitter.  Third, I'd like to get a haircut with a new style.  The third one is most immediately achievable, and I'm planning on making an appointment at the hairdressers for next week.

13. What was the saddest thing this year?
This is an easy one to answer.  The death of my dad, and then this so immediately followed by my precious Isobel Artemis going missing and never returning.

14. What has been your best discovery of this year?
Two things - the beauty of the part of Wales that I went to in September.  I hadn't been to Wales since I was a child, and never to the southern part of West Wales that I went to this year.  I fell in love with that part of Wales, and it was a brilliant discovery.

The other excellent discovery of this year was a recipe for barbecue sauce that I can have (providing I use a Becky-friendly balsamic vinegar, which isn't easy to come by).  Oh, and this Becky-friendly barbecue sauce goes amazingly with the unlikely deliciousness that is barbecued gem lettuces.  Try them, they're amazing, and make lettuce into something that's actually exciting!

15. What news story of this year has had the biggest impact on you/do you most remember?
Gosh, there have been so many terrible things in the news this year, but I think it's probably been the European refugee crisis, and also the African Ebola crisis.  Both are/have been truly awful, and the migration/refugee situation shows no sign of abating.  I have also been appalled by the UK government's response.

16. What's the best film you've seen this year?
I've only been to the cinema twice this year.  The first time was just a few weeks ago when I tried to go and see 'The Lady in the Van', but it was sold out so ended up seeing 'Brooklyn' instead.  The second film I went to was a couple of days ago when I went to see 'Carol' with my mum and step-dad when I was up with them for Christmas. 'Brooklyn' and 'Carol' are very different films and difficult to compare, but perhaps 'Carol' just pips the other to the post.  Not sure.

17. What was your best buy this year?
No hesitation at all in answering this.  By far my best buy was my gorgeous and delightful kitten Katinka Manjulika.

She is gorgeous, nutty, and has brought me so many smiles and huge laughter.  My precious girl.

18. What has been your best day out this year?
I think probably the day out I mentioned before with my friend Ruth when we went geocaching up at Bamburgh and Holy Island.  It was a day of great fun, great friendship, great weather, great laughter, great silliness, and of pushing myself to do more than I would on my own.

19. If there's one thing you did this year that you'd do differently if you could, what would it be?
I've thought about this, and I'm not sure there's anything major major major that I would do differently, but to put a bit of a spin on the question, if I could have fallen differently on 30th July when I fell in the park whilst trying to show some young friends what fun geocaching could be then I would.  I would have fallen so that I just fell and got muddy rather than fallen and torn my ACL and MCL (in layman's terms, I badly hurt my knee), with which I'm still having problems and for which I'm still having physio.

20. Is there anywhere you'd like to visit next year?
I'd like to go back to Cambridge and not end up in hospital.  I'd like to see my brother C and his family again while I'm down there, catch up with some other friends who live in that direction, and also meet up with my older godson who's now at university in Cambridge.

21. Name one thing that you did this year that you'd like to do again?
I'd love to have my nephews for the day again.  I'd love to take them out somewhere else, perhaps for the full day, doing other fun things, and have another day on my own with those gorgeous boys.  I love being an aunty.

22. Who gave you the best advice this year?
Oh gosh, I don't know.  It was probably my psychologist who is great at giving advice.  Maybe it will turn out to have been the kind of reading programme I'm meant to be doing and before long I'll be back to being able to read.

23. What new skill would you like to acquire next year?
I think I want to learn to knit.  I love crochet, but you can do different things with knitting and I'd like to be able to do those different things.  I've bought a book from which I'm hoping to learn, and it's in the same series as the book from which I learnt to crochet, so I'm hoping it will work for me.  I have lots and lots of yarn, so the only thing stopping me from starting to learn now is the fact that I don't yet own any knitting needles.  Quite a stumbling block, come to think of it.  I'll have to do something about that in the next little while.

24. What was your favourite TV/radio programme this year?
Okay, this is where I have to confess to my guilty secret of the latter part of the year ... Hawaii Five-0.  It's much more violent than most things I watch, but it is also complete escapism, in part because they always catch the bad guy in the end.  Most of the time it takes itself a bit too seriously, but there are times when that slips and you see it almost mocking itself.  I've been watching all the episodes from all the modern series and loving them!  Also, the theme music is fabulous!

25. What would you like to make more time for next year?
Probably writing.  And reading.  I need to be able to write.  I desperately want to be able to write, and not just my blog, but the other things that I wish I'd been able to write last year.

I think I also need to make more time for time with friends.  I have seen friends this last year, definitely, but there have been great swathes of time when I haven't seen many friends, mainly because I've felt so poorly so much of the time and haven't had the energy to go out and meet up with folk.  And leading on from that, or perhaps incorporating it, I need to make more time for church.  Again, I haven't got there much over the past year because I've felt so ill so much of the time, so I'm hoping to be able to get back to church, and because many of my friends also go to church I will see them more too.

26. What has been the biggest disappointment this year?
Hmmm...this is a tricky one to answer.  I know what the answer is, but I'm not sure it's something I want to put into the public domain.  Let me see ... I guess it's the way a particular relationship turned out.

27. What was the best or most enjoyable concert you went to this year?
I went to two concerts of particular note.  The first was The Proclaimers, which was excellent, but it's the second that gets my vote for the best and that was Bellowhead.  They are the most excellent band who I have always loved seeing live.  They fill the place, whatever the place, with joy, and I have always come out of their gigs feeling, 'This is what living is about!'  Extremely sadly they are disbanding after something like thirteen years together, so the gig I went to at the end of November will be the last of their gigs that I ever go to, but it was absolutely fantabulously brilliant with dancing not just in the seats, not just in the aisles, but dancing around the aisles - folk doing the conga around the auditorium.  Such a brilliant atmosphere, and all the guys and gals on stage obviously loving it too.  As my seat (or rather, wheelchair space) was on the far side of the auditorium from the exit I had to wait until most folk had left before I could cross the auditorium to go.  However, while I waited for people to leave I noticed that a couple of the band members had come back onto the stage to clear away their things, so I took the opportunity to trundle over and ask if they'd sign the CD I'd bought in the interval.  They were lovely, friendly, chatty, full of the joy of the gig, and had no qualms at all about signing my CD :D

28. What do you think was the best thing you did for yourself during the last year?
To be a cryptic, I allowed myself to be honest with myself about something that has been surprisingly liberating.

Something completely different and about which I have no need to be cryptic, getting Katinka was definitely a brilliant thing to do for myself.  I know some folk have reservations about me having a cat because of my lungs, but sod it, I'm ill without a cat so I may as well be ill with a cat.  And most importantly, Katinka has brought back my smile and she gives me so much joy.  I was completely miserable after Dad died and Isobel went missing, and ever so lonely.  Katinka has renewed a life in me that was fizzling out and I love her to bits.

29. What is the biggest difference in yourself from this time last year?
Hmm, I'm not sure that I am terribly different in any very significant way ... unless I refer to my cryptic answer to number 28, and that's not actually a difference...

30. What are you most looking forward to about next year?
Having fairly recently been started on insulin for my steroid induced diabetes, I am looking forward to feeling significantly better than I have for quite some time.  After a steady and steep progression in my diabetes, and several times ending up needing to go to A&E with very high blood glucose levels, my GP referred me to the diabetes centre at one of the city's hospitals.  It took several weeks for the referral to come through and for the appointment date to arrive, but once I got to see the consultant I was very impressed, and have continued to be extremely impressed with the service the diabetes nurses provide.  They are gradually titrating up my insulin dose (currently on 18 units of biphasic insulin) and I am in very regular contact with the diabetes nurses while they do this.  I will be seeing the consultant again in three months, by which time I'm hoping to be feeling a huge improvement.  I'm already feeling a lot better than I was, and it's only as I begin to feel this improvement that I realise quite how utterly dreadful I had been feeling the entire time before, so roll on the rest of the improvement!  I can't wait!

Review of 2014

*peeps around the corner*
*whispers* Hello... I'm still here... I've been a bit busy... Sorry about that.  I'm back now, and I intend on being more productive here this year.  In the meantime, seeing as I'm here, I'm going to do my annual review of the year, but seeing as there's not a lot of point in reviewing this year, with only being three days into it, I'll do the more typical thing of reviewing the year that was, using the same questions I set for my previous Review of the Year.

1. What has been your biggest achievement this year?

Probably gaining a position as a lay reviewer for Asthma UK.  This is a new thing for me, only gaining it three or four weeks ago.  I was one of many applicants throughout the country for about five lay reviewer positions, and went through a process of application form, short-listing, telephone interview, and selection.  I was greatly surprised and hugely delighted to be successful, and I'm looking forward to getting started in a few weeks time.  It's a voluntary position that I can do from home, will involve a lot of reading, and some teleconferencing.  As a lay reviewer I'll be on a panel of other lay reviewers, scientist, and medics, who will collectively decide which of the many research proposals put forward to Asthma UK are granted funded from the charity.  It means a lot to me to have got this position, because it means that finally my experience and knowledge of asthma will be put to good use, and has potential to be a part of something that changes and develops treatment and management of the disease.
2. What made you laugh most this year?

Hmm, I always seem to have trouble with this one.  It's not that I don't laugh through the year, it's that I have trouble remembering what the hilarity was about.  Let me think...I know that I've had some very silly conversations with my mum through the year that caused us both a lot of laughter.  Again, I can't remember what these times were about, but most likely they were plays on words that probably ended up being a bit rude ;)

3. What unfulfilled hopes do you have for this past year?

Writing.  I didn't get much done at all this past year, which my blog reflects with only four posts for 2014.  I'm sorry about that, but I'm mostly sorry that I haven't been in an emotional place where writing has felt very possible.  I'm still emerging from the horrible thing that 2013 was, but I'm a great deal better than I was this time last year, and I'm hopeful that I will be able to write this year.
4. What has been your favourite/most listened to piece of music this year?

I have an eclectic taste in music, my listening has reflected that, but certainly at the back end of 2014 I listened a lot to the Peter, Paul, and Mary track 'Jane Jane'.  It's a piece I first sang as a teenager with the Swing Bridge Singers, and which I've been singing again this autumn and winter with my current choir, Flotsam.  I love it, particularly the arrangement we do by Scottee (MD of both Swing Bridge Singers and Flotsam).
5. What was your best holiday this year?

I had a few trips up to Edinburgh through the year, but my only real holiday was a family holiday to Shropshire in May for my mum and step-dad's seventieth birthdays.  It was very lovely, and great to spend time with all the family.
6. What new skill, if any, have you acquired this year?

Crochet!  I had decided that this was something I really wanted to learn in 2014, and then in February/March my friend Ruth said she also wanted to learn.  Ruth had a couple of months off work recovering from surgery so we got together during that time and taught ourselves to crochet from a fab little book I'd bought. We learnt all the basics together and then went our separate ways with it, and now I'll give almost anything a go.  I am completely addicted and find it very relaxing.
7. What's the best book you've read this year?

I think probably 'The Music Room' by William Fiennes, which I was given for my birthday.
8. What has been the biggest challenge of this year?

Emotionally surviving.  There has been a lot of stress and unhappiness in the last twelve months, with several deaths, and a number of very difficult situations.
9. What is your happiest/fondest memory of this year?

Hmm, despite the upsets and difficulties of the year, there have also been many good things.  I have lots of lovely memories of times with friends and times with family, especially my nephews.
10. Of what one creation of the past year are you most proud or pleased?

Probably some of my crochet creations, and probably one of these:

11. What new hobby did you take up/old hobby did you reinstate this year?

I took up two hobbies this year, one I've already talked about - crochet; the other is geocaching, which is basically an on-going international treasure hunt using GPS.  I love that it gets me out and about, discovering new places (even locally), rediscovering old places, even just going to places I usually go to but looking at it a different way because I'm on the hunt for the 'treasure' - the cache.  I've also enjoyed setting a couple of caches myself and making some new friends too.
12. What one thing would you really like to do next year?

I'd like to write.  I'd like to make good progress with my book.  I'd like to crochet some warm hats, scarves, and gloves/mittens for homeless folk.  I'd like to find all the mulitcaches in the city centre.  Lots of things, not just one thing.
13. What was the saddest thing of this year?

Oh, lots of death at the beginning of the year.  It started with the death of a friend of twenty-five years and more in January, then the tragic and unexpected death of one of my cousins at the beginning of April, and nine days later the death of my gorgeous and ever-characterful cat Zachariah Zebedee.
14. What has been your best discovery of this year?

In a very literal way, I was delighted to discover a particularly tricky geocache at East Cramlington Nature Reserve, in fact it was the first one I went hunting for there and it took me at least 25 minutes to locate it.
15. What news story of this year has had the biggest impact on you/do you most remember?

Gosh, there have been so many terrible things in the news ... I think the bleakness and such widespread impact of the Ebola crisis in Western Africa has been just terrible...still is terrible. 16. What's the best film you've seen this year?

I didn't see many films at the cinema this/last year, but I did see 'What We Did On Our Holiday' and absolutely loved it.
17. What was your best buy this year?

Isobel! My gorgeous kitten.  Strictly speaking I didn't buy her because she was bought for me by some beautifully-hearted friends, but I think she still counts for this question.  Here she is lying on my legs last night.

18. What has been your best day out this year?

You know what, I've had many good days out this year, a lot of them doing geocaching.  I had a fabulous day with my new friends Helen and Carrie doing geocaching in the Tyne Valley, and another in Chopwell Woods.  I had a great day geocaching up near Morpeth with my friend Ruth too.  However, I think all the fabulous days I've had geocaching are just about pipped by a day with my dad at Rising Sun Country Park.  It was so special to spend some time with him, just the two of us, and to see him enjoying himself.
19. If there’s one thing you did this year that you’d do differently if you could, what would it be?

I'm not sure ... There was something that came up in my therapy sessions with my psychologist that caused me a great deal of stress as it looked as though some old demons might be forced to the fore.  I had several weeks of stressful uncertainty, and perhaps I would approach things differently if I were to go through that again ... but I'm not sure that I would have any choice in the matter, as I don't think I really did this time.  Difficult.
20. Is there anywhere you'd like to visit next year?

Um, possibly Derbyshire.  I spent a few nights in Derbyshire at the end of my Dorset holiday in 2013, but there's a lot of it to see and I wasn't there long enough to see very much of it.  Also, the triceratops hat I made (shown in one of the photos above) is for the young son of a friend in Derbyshire so it would be lovely to give that to them myself.  I would also like to visit my brother and family who are in Cambridgeshire, especially as they gave me identical twin nieces as an early Christmas present at the end of November.

21. Name one thing you did this year that you'd like to do again?

Take Dad for another day out.  It's not easy with my limited mobility and Dad's own disabilities, but we did manage it a couple of times in 2014, and I think if I find the right places to go, it should be possible again.
22. Who gave you the best advice this year?

Probably my psychologist.  She's helped me through a huge amount of stress, difficulties, and upsets through the year, and at times that's included giving advice for management and survival between appointments.
23. What new skill would you like to acquire next year?

I might like to try Tunisian crochet, which is sort of an extension of crochet knowledge, whilst also being a new skill itself.
24. What was your favourite TV/radio programme this year?

Oo, there's been quite a lot of good telly this year.  I really enjoyed 'The Wrong Mans', and then there was ... oh, what's it called? It was set in Yorkshire and had what'shername in as a police officer ... 'Happy Valley'!  Yes, 'Happy Valley' was great too.
25. What would you like to make more time for next year?

Two things - writing, and my dad.  If I am to try to write I need first to make time for it, even if I sit doing nothing for a while before I find a way back into it. As for Dad, I haven't made enough time for him in recent months, mainly because I find it so upsetting to see him in such a deteriorated state, but I'm also aware that it's the coward's response to avoid the difficult things.  I want to make the most of whatever time he has left, but I also want those times to be good.  I find it particularly difficult when I go to see him in the care home and I'm searching for something to talk about and not knowing quite what response I'll get from him, so I want to take him out.  I want to take him places I know he will enjoy, but where I can manage him too, places we can enjoy together, that just being there initiates conversation, places that will form good memories together.
26. What has been the biggest disappointment this year?

I'm not sure.  To be honest I can't immediately think of any major disappointments, except that of not writing.  I'm sure there have been things that I've missed due to illness that I was disappointed about at the time, but I can't now remember what they were.  Perhaps that's a good thing.
27. What was the best or most enjoyable concert you went to this year?

I haven't been to many concerts in the past twelve months, but I did go to a great one of music from Oscar winning films, hosted by Barry Norman.  The concert was at Sage Gateshead and I went with my friends Rachel and Marc.
28. What do you think was the best thing that you did for yourself during the last year?

Went to see my GP early when I suspected I might be developing diabetes.  I was lucky that it turned out I had Impaired Glucose Tolerance, rather than full diabetes, when I first went to the doctor, but my early action meant that it could be watched closely, so as soon as it reached a level that diabetes was diagnosed, the wheels of diabetes management/education could be put in motion. 
29. What is the biggest difference in yourself from this time last year?

I'm not as depressed as I was.  In fact, I'd say that I'm low rather than depressed, and not so low that it often causes me a great deal of distress.  I hide myself away sometimes still, which is counter productive, especially as I sometimes find myself getting lonely too...
30. What are you most looking forward to about next year?

Meeting my twin nieces, starting the Asthma UK lay reviewing, getting out and about with more geocaching, hopefully with friends.

It's complicated

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.