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)

4 thoughts on “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.

  1. Christine Reynolds says:

    I have been to the zoo today! It’s my sons birthday and nearly three year old Rosie decided that the zoo would be the perfect treat for Daddy! As it’s only about 20mins from us we met them there. It was really nice to go out and I haven’t been to this zoo before. I took my walker with me and oh boy am I glad I did. We were there nearly 5 hours. After the short drive home I had stiffened up and had to be pulled out of the car. I staggered up the drive, my hips and legs screaming! I am now plopped in a chair for the rest of the day and I am dreading waking up tomorrow!
    Your writing is so good you should really write a novel x

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    • Thank you once again Christine – I am glad you had a day out, but I am quite sure the walker would have been very necessary after five hours!! :O Stiffening up afterwards is always the worst bit huh. Get a decent sleep and make sure you have painkillers to hand in case you are sore tomorrow :/ xx

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  2. Hi Kath, at long last –here I am eventually, just finishe reading your so interesting blog! It truly amazes me that despite all your problems–you always find time to write these blogs and participate all the time on fb!! You really are an inspiration to us all!! I have taken in all that you have been through and it amazes me—-how you are able to bounce back—no matter what! How are you now coping at work–or did you have to postpone that?? It’s good to see you getting out and about and joining in with your friends!
    I am now in remission and have stopped my Prednisolone and don’t go back to the Renal clinic until July!—-Am so relieved and grateful—and feel pretty positive! Maybe with me being so old and getting a quick diagnosis and correct treatment -has made all the difference to me!!
    The only other problem is now my Macular Degeneration—which in my r eye has changed from dry type to moist–with small bleeders at the back of the retina! I already have had the first of 2 intraocular injections of EYELEA and go this Thursday for the second and a month later for the 3rd–then review–to see if I’ll need any more! Have to say there’s no pain involved–get local anaesthetic drops before the injection / it all went well and no complications!
    Lynn has been in touch–she is now working with the Scottish Government re–specialist treatment for vasculitis patients, and wants to give them evidence of cases in different parts of the country! Will be sending my experience via e mail later today!
    I do hope you continue to improve and hope you enjoy being back at work as long as it’s not too much!
    How far are you from Ashington , Northumberland? My cousin’s daughter lives there and is returning to nursing this week after a long break and further studies!
    Well my dear guess it’s time to call a halt here, it’s always a pleasure to read all your posts and blogs, sorry it took so long to answer!
    Am now struggling to come to terms with a new smart phone and it is driving me up the wall!
    OK, enough for now, take care—you know what they say up here—guide folks are scares!!! lots of love–Peggy.

    Liked by 1 person

    • Wow Peggy that is a wonderful response. Thank you for some very lovely words – and I am sorry your eyes are worse. You seem to be dealing pretty well with the smartphone to me 😉 I am just taking it day by day at the moment, easy enough to overdo it at the moment. Take it easy please and hopefully Lynn has a good time with this venture – good of you to volunteer! Best wishes xx

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