May is Vasculitis awareness month!! In other news: Kath FINALLY gets ‘The Finger Prick of Happiness’ [in my defence, drugs and long overdue finger pricking] and makes her first adult house decision like a real, life-capable hoomin bean.

So the below is basically me today – fingers and remaining toes crossed not tomorrow as well 😉

I went for a walk on Saturday, borrowing mad, wonderful spaniel hound (see last post for a pic!). She was an absolute delight (e.g. no pulling on the lead, or trying to submerge herself in dead-fish-sludge), and I managed a good half hour wandering in one of my fave local bits of garlic/bluebell infested woods. I remained alive afterwards (just a teensy bit wobbly) and was very smug that I had had a proper stretch, with no toe pain or collapse afterwards. On Sunday I did a bit of the outside world and went to our local art fair – Print Fest. It was wonderful to see so much variety and hear people using fancy creative arty talk (some of it made me snigger a little…), but my joints were catching up by that point. I managed about half an hour, but too many people meant too much standing still, which is weirdly worse on my hips and knees than slow walking. The rest of the day I became steadily more floopy, and my brain said “No!” progressively louder.

Today has been a bit useless. I thought about sunshine and shuddered. The curtains have stayed closed all day. Pj’s have stayed on all day. I have achieved things like doing pill boxes for the next fortnight, but only as a means of appeasing the bit of me that was sad and angry that I wasn’t feeling capable enough to leave the house. I have definitely found there is a bit of a delay with doing ‘a thing’ [a short walk in this case!] and the ‘payback’ or ‘floop’ afterwards. It makes planning things scary, with the extra frustrating bit being that I can’t really predict the level of payback to follow. I have wanted to finish off this blog post all day, but my eyesight has been really awful and it has taken me until late evening to feel like I can handle focussing on the laptop screen. Most of the day has been spent listening to audio books (The Amber Spyglass at the moment!), and trying to make sure I am not forgetting anything for the upcoming few weeks. I struggled with the eyesight problem a lot when I was in hospital – on a LOT of drugs – and was blaming the steroids and morphine. Now that they have been tapered down so much, I am starting to realise it just seems to be part of how I currently experience chronic illness fatigue. It feels almost like making my eyes work normally (e.g. focus clearly) is one of the first bits of energy use that gets sacrificed, to be put towards other more important functions – like being awake 😉 In the Vasculitis UK Support Group on Facebook, we have been discussing fatigue quite a bit, following a recent British Society of Rheumatology Conference that had a section dedicated to discussing and sharing research (or lack of!) about it. It really has a huge impact on most of us, although to varying degrees day to day, and person to person. Tellingly, most people say it has more of an impact on their ability to live a ‘normal’ life than the pain. You can get used to dealing with quite a lot of pain, but doing that itself is also very tiring. I still find The Spoon Theory one of my fave ways to understand and explain it.

The following is a little bit of an update on some of the thoughts going through my head recently. It has made this post a bit more waffly than intended, but I can also blame brain fog so nyeh. Big Little Broo recently said he was worried about me being negative about the future, or in how I talk to people about how I am doing (very lovingly), and it is something I have had to think about quite a bit in order to decide how negative I actually was being. I have had many, many lovely conversations since about all of this and I think it was very helpful for me to step outside of it all and look at it objectively for a bit. Essentially? Being suddenly ill out of nowhere sucks. It really, really sucks. I am a disgustingly sociable, chirpy, bubbly person. I get upset if someone is mean to me, cry at sad adverts on tv and get insanely mad if someone is horrible to someone I love. None of that makes any difference or helps at all. There is no textbook on how to deal with a chronic illness and you don’t know how to process what is happening to you, sometimes for many years. In my case? It was over a year before I got any kind of name for what was happening to me and for many people it is even longer. It is hard to remain optimistic and plan things when everything – and I mean EVERYTHING – you relied on, or planned for in your future is under serious threat or stolen from you. It is that whole idea of saying “I’m fine thanks!” – and lying through your teeth as you can’t be arsed seeming negative ALL THE TIME, or telling the truth and risking people avoiding you, or stopping inviting you to things, expecting you to be there, etc.  I am very lucky with my friends, but it doesn’t stop it being something that most ‘spoonies’ fret about constantly. Anyone thinking I am being negative about the future (tomorrow, next week, next year…) needs to remember that it is (mostly!) more a case of being realistic or sensible. It is a learned response that has not come easily. I have essentially had to pick up through horrible trial and error that doing ‘a thing’ leads to becoming part of the sofa, or crying in a muddy tent, in a disgusting amount of pain and shame, or being admitted to hospital for several months and losing digits. The actual loss of Death Toe was a happy point for me, which many people probably find a little deranged, but that in itself is something I need to make clear. I am still able to find things to be cheerful about. Even if that is weird things like an amputation. Writing this blog helped hugely during some of the worst bits of hospital. It was a very strange haze of pain and opioids, and if I hadn’t still been clinging to all the little amusing moments, I would have given up pretty quickly. I have been looking back through this blog very slowly in the last few weeks, a post or two at a time. This has resulted in a lot of crying, but has also given me quite a good idea of how determined I was to find things to be cheerful about. Even if that was a funny comment from a ward mate, or a slightly less disgusting meal 😉

So… The Finger Prick of Happiness? I have FINALLY had my first INR test from a drop of blood out of my finger tip, rather than a vial from one of my long-suffering veins. This made me stupidly happy. For over two years now I have had regular blood tests. From October this became pretty much a daily occurrence, with only a few weeks off until I was released (minus Death Toe!) in February. Back in February I stopped the daily injections of anti-coagulants and started warfarin tablets, which I will likely be on for life. Since then, I have had at least weekly blood tests taken to determine my INR level and dose me for the upcoming week. My veins REALLY don’t like blood tests anymore; they refuse to give any blood at all, the needle ‘bounces’ off the scarred (fibrosed!) outside of my veins, and they basically need quite a lot of time to heal after over half a year of constant abuse from blood tests and cannulas. I find myself frequently apologising to practice nurses, telling them “it’s not you, it’s me!” so they didn’t doubt their skills. This is why, having finally stabilised within my target INR range, being allowed to have blood tests through an instant finger prick dosing machine is joyous. It is hard to allocate the credit, as I have been on so many different drugs now, but given the whole point of it is to thin my blood enough to effectively circulate in my toes and fingers, I think the warfarin is working. I say this tentatively, but I am noticing slow but definite healing in Fester (the big one that likes being infected alllllll the time) and Voldetoe (painful, annoying and never quite kicked off properly). My toes are still prone to being blue and mottled, but compared to what they were like last year, the difference is very clear. The very fact I have managed to stay out of hospital (except for planned chemotherapy and rituximab admissions) since early February is testament to that. This has included fighting off an infection in Fester whilst VERY immunosuppressed, and!! Fighting off my first cold/sinus infection WITHOUT being hospitalised again *smugness* 😀  I cannot even tell you how scary a fairly mild (gross) head cold was. I was absolutely knackered and my joints flared up massively, but I didn’t hit the line I had prepared to be the ‘give up and go to hospital’ point.

Drugs! I am still verrrrrry slowly dropping the level of prednisolone and painkillers I am on. The slow drop is partly so I don’t kick-off a physiological rebellion, but also so I can pin-point clearly if a reduction is too much, too soon. I had a doubting moment the other day, looking at all of the pills I was about to take for my morning meds, and wondering if they were all necessary now that I was feeling relatively more human. Then I followed that with the amused realisation that it is the drugs that are causing that improvement. I also have to remember that they have all been reviewed by both my GP and consultant several times in the last few months alone… It is very easy to tap into that general prejudice society has towards prescription painkillers and daily pill-popping. Even as someone who is both very scientifically minded AND going to be dependent on some level of drugs for a very long time – if not forever – I still find myself questioning if they are really necessary. This is pretty much wholly due to the fact that many people (generic use of people, also meaning myself in this instance!) are uncomfortable around someone dependent upon taking drugs constantly. I reckon (and yes, I am maybe straying into hypothetical rambling here!) it is because it challenges my perception of myself as a viable human being, who would have been eliminated in a pre-drug world, through painful, septic natural selection. THE NHS IS BLOODY ESSENTIAL PEOPLE! SAVE THE NHS, SAVE KATH! (Haha, Heroes reference 😀 )

Other nice things? I have a new baby cousin!! He is absolutely gorgeous of course. That goes without saying… His older brother is a delight and a fairly frequent visitor to my current home, so much so that he has his own shelf of toys, just under the fish tank he loves so much as well. But yep, they live a little while away, so driving over there is still a bit of a mission and it took a bit to be able to meet him. The excellent bit is, I think I get to see him again this week 😀 He smells perfect and did a wonderfully loud fart.

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My other new tiny animal friend is of as yet unconfirmed gender, still being called Floof (or similar). I would imagine that having ONE kitten is a little unusual, but Ginger (I called HER Spoon when she was a kitten) only had one. It seems that she has made up for it with extra enthusiasm for that one, so Floof is massive! Fair enough Ginger is a fairly delicate cat herself, but that kitten is just over two weeks old and I shudder to think how she managed to give birth!! He/She has more than doubled in weight/size already, so being an only child is clearly paying off!

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Recent house progress (as well as Big Little Broo painting most of the fresh plaster) has included an ALMOST finished bathroom!! I have made the first decision of its kind in picking the bathroom flooring… The mental angst and trauma involved was ridiculous. I exhausted myself driving to the nearest bigger shops to compare prices and options, only to find that the smaller local firm was very reasonably priced, as well as being able to give me samples to borrow and fit it quickly. I present… My nearly finished bathroom! Note, the exceptionally large shower and sensible (yet slightly shimmery) flooring 😀 I would only have been able to squeeze in a tiny bath, so went for an indulgent shower instead. With baths being at least currently inadvisable due to constant threat of toe ulcers (only recently, Death Toe made them impossible for over a year!) and not very easy to get in or out of with sore joints, the warm soak joy is sadly outweighed by the negatives.

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The only bit left to do really is fit the taps, cupboard handles, shower door and towel rail (just out of sight to the left), and fill the space opposite the toilet with my giant plant collection! Every bathroom needs a jungle 😀 Certain friends will be very chuffed to see the size of the shower, as CERTAIN FRIENDS have been known to previously put all of the plants in my current bath/shower for funsies… It is one thing doing it for a convenient water share, but quite another to obstruct normal usage!!

As a fun little aside, don’t search for ‘book throwing virginity’ in google. Instead, search for “book-throwing virginity”… I had come across the phrase in a very convoluted click through some book reviews, and absolutely adored it. The sentence being, “Tonight I lost my book-throwing virginity” in reference to the author of the quote’s displeasure with the book she was reviewing. I sniggered at the time, as I too have had the urge sometimes to throw a book very hard. For various reasons, but normally because the author has taken an original and promising premise and crapped all over it. I just didn’t realise quite how specific I would have to be to find it again, for the purpose of sharing it with you all accurately. Regarding books, I am still skipping through the Discworld series, although my pace has slowed somewhat; firstly due to being outside and being a human being a little more, and then due to the eyesight payback floop! I am on Witches Abroad and think this is about as far as I got the last time I decided to read them in order many years ago, as it is familiar, but only just. For anyone curious about the Discworld books, I cannot praise them enough. They are so clever and witty, but in such an accessible way. They are written in third person omniscient narration, so all of the action – past and present, and the thoughts of all characters are available to the reader. Terry Pratchett then manages to weave in an extra level of inside joking with the reader, through footnotes and sly references to our history and current culture, at the unknowing expense of the characters themselves. In trying to think how to word this, I actually just found an excellent article that uses Terry Pratchett himself as the main example! RIP 😦  Third Person Omniscient – Terry Pratchett That is probably the most nerdy paragraph I have written for a while 😉

Fun junk mail snapshot for you; currently decorating my fridge as I still cannot stop laughing at how bad I am in the eyes of some people… I honestly thought it was a joke, then realised it wasn’t and felt AWFUL – then thought actually, I still find it hilarious. Note the fabulous fridge magnets.

As mentioned in my haphazard shouty title, May is the internationally recognised Vasculitis Awareness Month. It also happens to be National Arthritis Awareness Month (both osteo and rheumatoid) and Ehler Danlos Awareness Month, to name but a few 😉 This is a chance for many people in the support group who aren’t quite as vocal or… sharing! – about the condition as I am, to share a few images or thoughts about how their lives are impacted by having a chronic illness. It can be pretty empowering to break your silence on a topic, but it is also a very vulnerable and terrifying thing to do. I think most of my facebook friends are pretty used to it from me, but please spare a thought that for someone you see sharing something who maybe doesn’t usually post about their condition – physical or mental – it can have taken a huge amount of courage for them to do so. The ultimate goal is to simply raise awareness, whether in making the name and problems associated with the disease more familiar with friends and family, or in giving other people an insight into what a lot of us struggle with daily, often in silence. I am not a silent struggler myself by any means, but that has largely evolved to be the case due to the love and support shown to me by my family, friends – and the support group having given me the courage and wonderful feedback to share my ongoing story through my blog. We also have AWESOME graphics to share and use wildly, as created by our very own Ginger Ninja Warrior, despite her not feeling 100% right now!

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…and lastly, but most certainly not least in the grand scale of importance,

I start work again tomorrow!!! (Ahem… Now today…)

After being off for seven rather eventful and traumatic months – and having had a few thwarted attempts wanting to get back into a normal working routine, I am due to start phasing back in my hours from tomorrow. The plan is to go back to a lower maximum of contracted hours per week. I had already dropped them at the beginning of 2016, when I started feeling increasingly unwell and began working from home. Now I will be doing just over half of what I had originally worked, split over a five day week, with the option to work flexibly from home still available. This is dependent upon meeting productivity and quality criteria, but the reduced hours and being able to phase them back up over a number of weeks should make this a little less of a shock. It probably seems strange to many people, that working with such favourable options is scary and potentially a bit overwhelming, but I am terrified that I will have forgotten every bit of knowledge I have accumulated over several years working for the company. Hopefully tomorrow will be reassuringly familiar and the computer will behave itself. It will certainly be very lovely to see some of my colleagues again – I strongly suspect most of the day will be spent on the phone to IT apologising for how many passwords will have to be reset. That, and going through *shudder* BILLIONS of emails. I cannot even imagine how many there will be. Hopefully the vast majority are already completely redundant… *shudder again* – Urghhhhh procedure updates 😦 What if EVERYTHING HAS CHANGED??? I have always found NOT knowing the answer to anything very scary;  my wanting to research the background of the medical side of things being a good example. I am basically walking back in tomorrow to being at the bottom of the knowledge chain again. It feels like the first day at school!! Which means…

GO BACK TO BED KATH!

Yes me 😦

(I woke up again to make this longer and post it. Oops)

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Kath gets up close and personal with the sofa; being home is exhausting and being ill is both very frustrating and incredibly complicated to organise. ***Lots of sweary ranting… and a beautiful pic of Death Toe remnants***

I haven’t really been getting the urge to do an update because I’ve been rather busy doing… Not a lot… What follows is a rather epic rant, so many of you may not really be too arsed about reading this, but frankly I am rather furious at the world, and my options are vent in writing or break things and I am not strong enough to break much more than a tissue at the moment 😀

I got home – e.g. back down from Scotland, from my parents’ house, a wee while back. End of Feb to be exact! Since then, I have had… Seven Doctors appointments in eight days. Two dressing checks, a GP appointment, full bloods for cyclophosphamide monitoring (which amounted to many many vials, including INR) and another three appointments solely for INR bloods. It is insanely confusing trying to remember all of these, even when they are all written down in my diary religiously. Which may sound ridiculous, but please remember I am utterly shattered and have for about six months been in hospital sticking my arm out at least once every four hours for a blood sucker or cannula or someone taking my bp. So when I cancelled an appointment a while ago WITH A FEW DAYS NOTICE – not even the one I thought I was in trouble for missing earlier on when all this was “kicking off” (my definition of kicking off has become decidedly more medical haha) – and added a note on the system saying ‘still in Scotland, INR test being done here’, I didn’t realise it was another strike against me at the local GP centre, as it was apparently a VERY IMPORTANT APPOINTMENT where you get set up on the stupid special INR system.

The other strikes against me having been because of the first time I was taken off the warfarin (in December) because I needed an operation to remove the hickmans line and my old genius Doctor (so much sarcasm. So so so much) had started me on warfarin a week beforehand: STRIKE ONE. Next, due to begin warfarin again in the New Year and got taken into hospital – urgent admission through A&E, cancelled online with a few days notice: STRIKE TWO. The next time it was discussed, I was flatly told that the local GP practice refused to monitor me and it had to be done at the hospital. Then the hospital said they wanted epic amounts of detail about my condition and why I was to be started on it and yadah yadah. A letter from my consultants at Addenbrookes was not deemed sufficient… So there was much bickering ongoing to sort this out and in the meantime, I was admitted urgently again and sent up to Carlisle… and my new genius Doctor (no sarcasm) was kind enough to finally get me cracking on the anti-coagulation juice in mid-Feb.

This went perfectly dandy, including me being tested to death and monitored in Scotland, until I got STRIKE THREE which was missing this VERY IMPORTANT APPOINTMENT. So I have had all these millions of blood tests in the past eight days and no one has actually been in charge of monitoring me. My GP is actually very wonderful and has essentially arm-twisted the practice nurses, who are all also individually wonderful, into setting me up on the system, probably helped by the fact they have been taking my bloods for the past few days and were seeing me attending appointments and diligently filling in my stupid twatting yellow book. I now have been told I have a new VERY IMPORTANT APPOINTMENT and that I absolutely cannot miss it as it is the last one available this month and if I miss it I have to go to CARLISLE!! to get set up on their INR twatting system and have all my blood tests sent up there… WHAAAAT??????? [To clarify, I am the one keeping track of the strikes… No one has actually bollocked me using the word ‘strike’ for a while, but I am aware fully of the incidents they are remembering and feel very aggrieved!!!]

Bahhhh. I have a trip back up north planned soon for Mother dearest’s birthday and it has basically turned the travelling for that into a bit of a complicated git, needing to be back down and rearranging all of the stuff I had arranged already with the GP practice in Scotland. My diary is disorganised chaos and everyone thinks I am horribly unorganised (I just googled the difference: DISorganised means thrown into disorder and UNorganised means not organised!!). I am in a shitty mood about it all and had an angry cry in the middle of a shop haha – Ooo! I actually saw humans – in real life – in the town!!!! For the first time since SEPTEMBER! – I drove, although admittedly literally two minutes – and went and did adult things like the Co-op for a bottle of milk and Costa for a chai latte (mmmmmm) with a friend I haven’t seen in months. It was lovely and the stupid INR crap has dimmed its brilliance 😦 Also starting to get fretty about Friday as I have the formal meeting reconvenement at work and I have to drive or pay £20 for taxis – that is basically the main reason for wanting to get a practice drive in today (and likely a slightly longer one tomorrow). It is a stupid mix of being happy for a chance to see my work colleagues and being upset about the whole being off work and formal meetings and having to essentially have yet another aspect of my life crapped on by being ill.

Being home has been nice for having my own bed back… and seeing my fish!! My shrimp is a handsome little dude. Most importantly, seeing my friends. I have had only a few weeks at the most since September actually being in my own house, as most of the recuperation time when I haven’t been in hospital (maybe five weeks in five months?!) has been spent up in Scotland! When not in the twatting GP surgery getting blood sucked out of me, I have been either sleeping or taking drugs. In the middle of all this I have finally managed to get some catch-up time in, including Giant Hound time 😀 I also (against the strong hintings of both Mother dearest and the accompanying friends…) went to the Vasculitis UK symposium in Manchester last weekend. This was amazing, partly for things like seeing that cars still existed – and tall buildings always excite me, as I am a country bumpkin 😉 But the singing in the car – mmmm! – and the hotel room with the giant tv and the kettle!!!

I managed the whole Saturday conference part, with some pretty informative and emotional presentations. I cried quite a lot and I wasn’t the only one. Meeting people I have been talking to online for so long was incredible and it was also a very useful chance to learn more about other people’s experiences and types of vasculitis. It covers so so much – essentially any blood vessel network in the body can be affected; lungs, heart, brain, skin, kidneys… Some very inspiring and motivational stories, particularly from the youngsters that shared their experiences. I didn’t manage the ball in the evening: I got all dressed up with Inside Friend and Fave, who had accompanied me and were equally as giddy about hotel room shenanigans 😉 and we ate a magnificent feast with a bit of serenading, and then I crashed and was asleep within about half an hour 😀 I did manage to get my pjs on and brush my teeth though 😉

*****UP CLOSE PICTURE BELOW OF WHAT AN AMPUTATED TOE GAP LOOKS LIKE – NOT AS GORY AS YOU WILL BE EXPECTING AND HE HAS A SMILEY FACE WHICH MAY AMUSE YOU, BUT STILL CONSIDER YOURSELF WARNED*****

As much as the pain I am dealing with day to day is so much less due to Death Toe being a goner, I am now having to deal with the rest of the condition being noticeable again, which has remained largely unchanged for over two years now. I first was aware of being unwell in December 2014 and that is about when my toes started to try and die. I have had daily joint pain, muscle aches, fatigue and brain fog since then, although to a certain extent it wasn’t so bad that it was impacting my day to day life and mobility until early 2015. So yes, Death Toe is gone. Speaking of, he has been replaced by Kevin Spacey (as named by Dad), who looks suspiciously like a vampire smiley face… Apologies for how close up Kevin is. I can’t make it any smaller and wordpress is not being cooperative. Kevin has at least healed well. Basically the only thing that has gone as planned in the last two years was that amputation!! The biopsy I had two days later… Not so well. Still a huge gaping wound in my hip and still requiring dressings and getting suspicious glares from the practice nurses, a month after being gouged at. Being ill is super fabulous in case anyone had missed the hinting earlier.

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Now Voldetoe has taken over as being a painful twat that is threatening to be infected. I remain off work six months on, on the advice of my Doctor, as I need yet more toxic crap thrown at me and get to start new drugs with new exciting potential side effects. Woopee. This is a very grumpy post. Kath is in a shitty mood. I am very chuffed to not be in hospital and to have my friends close to hand, but really… I am minus a toe and have precious little going for me day to day at present except taking drugs at regular intervals and attending appointment for people to suck my blood and get told off/sanctioned/isolated from society and have my stupid hair falling out at a stupid twatty rate, all for being medically weird.

Regarding hair falling out, one of my fabulous friends came and lopped about 50% of the remainder off for me a few days ago, as when it is long and straggly and falling out in handfuls it is even more depressing than short and falling out in handfuls. I thought I would be bawling my eyes out, but having a few of my buddies round making me giggle and making moustache faces on the floor with the choppings was sufficiently distracting and I managed the whole event without howling. Yes, I have a huge amount of hair left, but trust me when I say I am having handfuls coming out each day. Anyone who wants to get offended about me discussing this, because I have fabulously thick hair still and shouldn’t be complaining – or who thinks chemo is just for cancer – can come round and I will cram my moultings down their ignorant necks. Oooo agressive angry Kath !! I’ve dropped to 9mg of pred this week, I should be getting progressively more sweet-tempered – how confusing!!! 😀 Also about to get more toxic sludge in the next few weeks, although as not cyclophosphamide, not AS bad on the hair fally-outty front… But I am still only about six weeks from dose ONE and it says three to six weeks for hair loss to START on all the cancer websites 😦 Mine began after about ten days!!!

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I also get to go up to Carlisle again soon and get incarcerated for more rituximab because I got that nasty itchy rash all over me last time and may have an even more exciting reaction this time… At least Death Toe gave me a very specific focus for the hatred and the anger. Now I am hating Voldetoe; everyone is welcome to jump on board the hating-wagon.

Ahhh – the good news? I get pumped full of chemo drugs that are very likely to have made it impossible for me to ever get pregnant safely – and what happens? My shitting periods have started again, after taking a few months off and worrying the crap out of me. Thanks body. Very sensitive timing.