A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 3 May 2015

Departed

Oh, it's so long since I posted, but given all that was going on at the time of my last post, perhaps you understand some of why I haven't blogged.

As you have probably guessed (or perhaps hoped), I have been discharged from hospital since I last posted.  I had a long admission with a very, very slow weaning of the aminophylline, which went smoothly, but given the upset of my father's death shortly after I was moved from ITU to the ward, we all wanted to be sure that my lungs were going to cope with the reduction in IV and its replacement with the tablets.

Asthma is most definitely a physical illness, but like many illnesses, it can be affected by emotional upset and distress.  This doesn't mean that it's psychosomatic or 'all in the mind', just that physical and emotional well-being is intertwined, and asthma can become worse with both repressed emotion or expressed emotion.  Laughing or crying can both induce an asthma attack in some, including me, which seems most unfair.  When I was in hospital this last time, and out of ITU, I was trying to recover from a terrible asthma attack whilst also trying to find a way to grieve for my father without undoing the healing that my lungs had thus far done.  One of the junior doctors came to see me one weekend evening, still doing her ward round.  I poured out some of my upset that most of the time I was trapped with on my own, and as I forced back some of the tears she said, 'There's no harm in crying and letting some of it out.'  I replied that I wanted to and needed to, but the harm might be that it could set off the asthma again.  She held my hand, which was enough to tell me that she understood that dilemma and that fear, but didn't have the words to make it right.  I'm glad that she didn't try to make it right.  Through a series of comments and observations on both our parts I established that she was a Christian, and I asked if she would pray for me.  She told me that as a doctor she has to be careful about not imposing her beliefs on others, but as I had asked then of course she would pray, and she did.  This lovely young doctor sat with me in my hospital room, with my upset and distress very much on show, and prayed, and it was exactly the right 'medicine' for me that evening.

After my week in the Intensive Care Unit at RVI, I had another three weeks on the ward at the Freeman Hospital.  It was a difficult discharge, not so much because of the asthma, but because I felt like I'd had everything knocked out of me - physically and emotionally.  The one thing I was holding on for was cuddles with Isobel Artemis, my gorgeous kitten.  I had actually seen her once during my admission when a collaboration between my friend J, who was looking after Isobel, and N, the hospital chaplain, meant that J was able to bring Isobel to the hospital chapel (with the permission of Infection Control), and N was able to trundle me down there from the ward in a wheelchair.





I was so looking forward to seeing Isobel Artemis again and giving her masses of cuddles because I'd missed her so much ... but when I got home she wasn't there.  J said that Isobel hadn't been at home when she'd come in to feed her that morning, but we waited in hope that Isobel would return.  Isobel hasn't come home.  She's still missing almost eight weeks later.  I have been so lost without her and every day I wish she would saunter in through the cat flap as though she doesn't know what all the fuss has been about, but every day there is nothing.  I have registered her as missing with the microchip company so that we will be reunited if/when she's taken to a vets or shelter that scans for microchips.  I have registered her as missing with the company Animal Search UK who have put her details on her website and Facebook page.  They've also produced this poster.


 I've put up forty five of these all around the area, plus dropped about 2000 similar flyers through letterboxes in the area.  I've been out calling her at all different times of day (and night).  I've emptied the vacuum cleaner out in the back yard and tied a piece of my clothing to the back fence as both these things carry my and her scent so are meant to attract her home if she's anywhere nearby.  I've contacted the dog and cat shelter, and put her details on every appropriate Facebook page that covers the area.  I've contacted several vets practices in the area.  I've had a few calls from Animal Search UK with possible sightings that I've followed up immediately, but they've turned out to be other cats or nothing at all.  Nothing.  It's like she's just vanished.  The vet receptionists think that, given all that I've done to try to find her and there's been so little response, she's most likely been stolen.  I can only hope that she is eventually scanned for a microchip and discovered to be missing from me.  I long to have her home.

I will never give up on getting my precious Isobel Artemis home unless I get a call to say that she's been found dead, but I'm not good at having no cat in my life.  I'm going to get another kitten.  J has a grown up nephew who has cat who had kittens thirteen days ago.  I would like another little girl kitten if possible, and in a couple of weeks J's nephew and I are going to take the four kittens in Daisy cat's litter to the vet to be sexed.  One of the kittens is a little calico so is almost certainly female, the other three are tabbies like Daisy, and I'm kind of hoping that one of them is female too as I think I'd quite like a tabby.  Anyway, I went to meet all four of them when they were just two days old.









I can't tell from the photos which is which, but I do know that all four of them appear in these photos.  Let me know if you can tell the difference between them.  They'll be much easier to tell apart the next time I see them at four weeks old, and I'll hopefully be able to see more of their personalities too.

So, the other departure, the one I've been avoiding saying much about.  Dad.  We had to wait a month after Dad had died until we could have his funeral, in part because of a backlog at the crematorium.  It was a difficult day, and actually I don't want to say very much about it ... Although I will say that after the funeral and the wake I had a really good family time with my mum, step-dad, my brother M and his family, and my brother C and his family.  M and family were staying in an apartment hotel (a hotel comprised of little apartments, with self-catering facilities as well as food/drink that can be ordered and brought to the apartments) that we all congregated at both between the crematorium and wake and after the wake.  The children were able to run around inside and play together, which they all needed as there isn't much scope for that at a funeral.  The rest of us sat and chatted, and remembered Dad, and then we ate and talked about 'normal' things too - things that weren't about death and dying, or the people we've struggled with through the whole process, or the difficult aspects of Dad that were ignored in the wake remembrances.  We enjoyed being together and being a family, and you know, since then we've perhaps had more contact with each other than we had before.  Maybe it won't last, but at the moment it is good, and that is the positive that's come out of Dad's death.

Wednesday, 4 March 2015

End times

Dad died the day after I wrote my last post. I asked the doctor if I there was any chance that I could go and say a last goodbye, but I wasn't well enough or stable enough. I know the consultant was right, but it's still impossibly difficult that I didn't get to say goodbye.

The last time I saw Dad was a couple of days before I came into hospital, although up until then I had been visiting him every day. I got a virus and didn't want to risk giving it to Dad so I stayed away, but when I last saw him I'd fully expected to see him again. Alive. I didn't know that the seemingly innocuous sore throat that I woke up with on the Tuesday was suddenly going to turn on me and have me almost dead by Thursday.

I woke up confused, not knowing whether to see a doctor or not, so I put it off so as not to be a nuisance. My mum phoned me in the afternoon, said I sounded awful, and I told her my dilemma. She said that if I was in doubt about whether or not to see a doctor then I needed to see a doctor - "That is the rule," she said.  So I rang the surgery, apologising for calling late in the day (3.10pm) when I knew it was unlikely they'd have any appointments.  Much to my surprise I was given one for twenty minutes later.

I waited fifteen minutes beyond my appointment time before being called through to the doctor, but almost as soon as he saw me he was calling for an eight-minute, blue light ambulance. In my confusion I was surprised. It frightens me that I am so poor at realising how ill I am, however many times it happens.

The paramedics ignored my calm demeanour and misleading numbers, correctly reading the calm as a sign of a life-threatening asthma attack, and the numbers as a tiring asthmatic who is too used to the scenario and is on medication that affects some of those numbers. They bundled me into the ambulance, miraculously got a cannula into a vein in my arm, and gave me hydrocortisone, adrenaline,  chlorphenamine, and several nebulisers. They strapped me firmly onto the stretcher, then tossed us through the streets with flashing lights, screeching sirens, and blaring horns. The journey to the city centre hospital took no more than five minutes, during which time the paramedic called ambulance control to give the A&E department warning of our imminent arrival.

I was taken straight into resus, where I was greeted by the waiting doctors and nurses, and was there only minutes before the ITU team were being called. An aminophylline infusion was started, blood gases were done, bloods were taken, an x-ray was done, the anaesthetist arrived, they all hoped the aminophylline would start to work quickly, but it never does. It works, but with me it takes a while, a long while. Hours. Time wasn't on my side and I was taken to HDU, but only in passing, because as soon as the anaesthetist consultant saw me he had me moved to Intensive Care.

I spent a week in ITU on BiPAP, all the while receiving texts about my dad's decline. The nurses rang the home for me to enquire how Dad was, but they never told us anything useful, and the real information came from Dad's wife - the news that his respiratory nerves had started to fail, he was breathless and distressed, time was running short. I was useless. I was struggling myself to keep breathing, and I couldn't be with him when I wanted to be.

I was moved to my usual ward, teansferred by ambulance from the hospital in the city centre to the one in the outskirts. Moved to the ward that is my second home and the staff are like family and friends. I was closer to Dad than I had been, but I still may as well have been a million miles from him. I so desperately wanted to be with him, to hold his hand, to say goodbye, to see him one last time, to see him as I had expected. It didn't happen.

At 12.25pm in the afternoon of Sunday 22nd February I received a call on my mobile, while I was lying in my hospital bed, to say that Dad had died just five minutes beforehand.

I hadn't been there. I hadn't been able to say goodbye. I hadn't been able to hold his hand. I hadn't been able to see him again as I'd been sure that I would. I still wasn't well myself.

More than a week later, I am still in hospital. My lungs are much better, but I am not coping terribly well with Dad's death, my own near-fatal asthma attack, my time in ITU, a whole host of emotions, and trying to think about Dad's funeral. I have a room on my own, and I'm ever so thankful for the privacy, but I still don't have the space to grieve. My day is dictated by the functioning of the ward, and all the while I'm here I'm watched. I need now to be home, except that I'm also fearful of going home, of the suddenness of my decline (again), and to be alone with my grief for the first time.

Saturday, 21 February 2015

Very briefly

I am in hospital. I've been in ten days now, with a week in Intensive Care. I am mending, but still pretty poorly and completely exhausted. At the same time my dad is in a nursing home four or five miles away. He is dying. His wife and my brother have been called to his bedside this morning. He is in the final throes of life and death. I can't be with him and I can't say goodbye.

Saturday, 3 January 2015

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.

Monday, 29 September 2014

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.

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.

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.