Fundraising, sunshine and being sensible :P A few months’ worth of rambling…

Had a pretty quiet few months for posting – I think I post less now I have more energy and am feeling well enough to be outside or with friends. The combo of more physical exercise and working five days a week now means much less spare brain time for writing! Realised it is about a year since I started the methotrexate and started to go downhill fairly swiftly. Going to be quite an emotional few months looking back over last year! Just had another guff INR test – went from being very stable a few weeks ago on a regular 6mg a day, to dropping suddenly… Dose was tweaked up and the result improved a little and now it has dropped again. Dose tweaked up even more now and back to weekly checks for a bit 😦 Only thing that has recently changed meds wise is slight decrease in pred and stopping the pregabalin (nerve painkillers) and JUST started amlodipine for my mentally high blood pressure, as picked up by Consultant in an outpatient appointment a few weeks ago. Amlodipine is fun; started off on 10mg a day and I am finding my heart goes like the clappers sometimes… Pretty standard side effect apparently. No swollen ankles yet thankfully. Never want memory foam feet again! Quite hard to decide what is bearable, but trying to stick it out until bp check next week and if it has had a big impact will see if I can get away with 5mg a day instead!

Anyway, waffly update has been slowly being compiled for many weeks now as I knew I would want to splurge at some point. One of the absolute highlights of the last couple of months was Team Toetally Awesome running variously the half marathon and the relay for the Edinburgh Marathon Festival. £1680 was raised – see Toetally Awesome on JustGiving Given that the initial target was increased to £1000 this is pretty spectacular!! James, Izzy, Emily, my wee bro Connor and Callum – on behalf of myself and Vasculitis UK, thank you so much!! Lauren (a school friend, Uni flatmate and general co-shenanigator since the dawn of time) also smashed her fundraising target, raising over £260! I am so chuffed to have been able to be there, although getting to the finish line was not easy at all. Took several modes of transport and a pretty gruelling walk to and from the bus. Even those amongst us who were super healthy were struggling – the runners were all a bit stiff and/or limpy! Mega thanks also to Mum and Dad for everything that weekend. A lot of organisation and feeding happened, not to mention the financial input…!

 

 

 

It was cracking weather whilst up in Scotland and I had a bit of a walk and a paddle in the Loch! Still can’t properly swim as the hole in my hip has a dressing on it, but saw practice nurse this morning and… I would hope as soon as next week I will be sharing a really gross picture of the healed wound! It is majorly delicate and essentially a huge purple bruise type scar, but has finally sealed over completely and now just a case of letting it toughen up a little whilst protecting it a bit still!

 

 

 

The last two months saw me starting back at work (beginning of May) on a phased return… The phased hours are now finished, so up to a new weekly max. deliberately set up as a new contract to be able to stay in work, despite having variously crappy spells. Although still getting brain tired some days, the reduced hours mean I can manage this more flexibly at home and have sofa nap time midday when required. I have essentially sacrificed a big chunk of what was already a relatively low income, in order to try and have the physical strength and stamina – as well as the mental energy and enthusiasm, to get some of my life back to normal. Was a bit of a gamble, but so far I feel like it is paying off.

I have managed to be a little bit more myself sometimes with the socialising – much more music lately! The odd local pub gig and even a cheeky night out to Lancaster to watch my faves Bad Transmission playing an excellent set! I wasn’t too worried about it, but it is taking some getting used to having nights out sober when others are not… More for the being much more aware of everyone else’s moods and people being a bit more unpredictable than how I am feeling myself. Dancing when sober is surprisingly easy when you are overwhelmed with joy at the fact you CAN! I have still found I get a pretty walloping fatigue hit afterwards, but that is really not too surprising. I don’t know how much of it is the underlying disease and how much is lack of muscle strength, but I definitely get the wobbles after doing anything exciting and my ankles are the very devil for stiffening up! Sometimes before I even get in and collapse, which means I start walking like a penguin 😀 I could hardly get up the stairs without crying at the end of last summer, so to be able to have a bit of a dance feels incredible anyway, just need to take it easy still 😉 Below pebble painting was done whilst waiting for Bad T to do their warm up, pre-gig… Note also a lovely snail called James…

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I also went down to Morecombe for the first time ever, to see local mentalists Deatbeats at a Steampunk festival – longest drive I had done for ages, wonderful company and some cracking costumes from both Deatbeats and Steampunk festival crowds.

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Another nice wee bit of news; we have a lovely new shop in town, with beautiful vintage and colourful boho and festival style clothing. Colourful and wonderful says it all really!! She was kind enough to display some of the cards a support group buddy designed, in order to raise funds for the charity.  So far over £300 has been raised by selling these cards and plans are afoot for further designs in the future 🙂

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Have had my first brush with chickenpox exposure too – inspired me to finish off making a document for the support group files that I started a long time ago. I think it was even back in hospital…?! The question of what to do if (as someone immunosuppressed/with vasculitis) you are exposed to chickenpox or shingles comes up time and time again. The file I made is visible below and even if you are not in an at risk group, it may give you some idea of just what those of us who are have to think about… GUIDELINES FOR CHICKENPOX AND SHINGLES

I also made one for what to do in the case of a suspected infection. This covers all manner of sins, but even knowing this info, many of us – myself included! – are very guilty of trying to avoid hospital admissions. Personally, I used to feel like it was giving up in a way, even when I was getting increasingly ill and was not getting any proper treatment and had a toe giving me so much pain I was sleeping in 20 min stretches. I really used to try and hold out as long as possible, until eventually I went in and wasn’t allowed out for several months! The trick being, seek advice as soon as it becomes apparent and you can maybe avoid it getting worse 😛 GUIDELINES FOR SUSPECTED INFECTION

Recently ticked off a bit of a yearly milestone – Another Fine Fest, a locally organised event on its third year now, as a celebration of our home town’s very own Stan Laurel’s birthday. Cumbria Live write up!  Lots of music all day on Saturday – was a little bit more careful than previous years and only went to see a few things to limit the walking around! Made a giant cardboard banana but didn’t actually take part in the banana parade/dancing… Highlight for sheer joy factor was the official World’s tiniest club hidden in an alleyway… Had a dose of Bad Transmission and Deatbeats… Downside was it being ridiculously hot; made me feel really shitty for a few days afterwards, with joints feel swollen and super tired. This was from even BEFORE the day of music and fun on Saturday (I napped halfway through!) and I was even more careful yesterday. I was actively wishing for rain, which would probably have DAMPENED the mood a little (heh heh)… After a few more melting hot days, it has finally had a few cooler days here with persistent drizzling today, very reminiscent of the bit of Scotland my folks live in 😉

I have plans to go see Rising Appalachia in Kendal for a tiny sneak gig later and factoring in some hefty resting to make sure I can deal with it – very excited 😀

Aside from that, trying to make decisions on things like kitchen tiles and not get quite so overwhelmed and fretty about tiny silly things like dogs barking and bigger pointless fretting about things like INR results and hair loss!! :/

 

Kath goes back to work, gets wacked on lemonade and Voldetoe gets the chop!! (…ish. Ok, not so much). ***HEALTH WARNING: Pic of toes – not too manky***

This week is week two of Vasculitis Awareness Month and it has been truly lovely to see so many people getting involved in sharing snippets of their daily ups and downs whilst living with this disease. Lovely in a weird way, as it obviously isn’t at all nice that so many people have hidden struggles, but the way some people find nuggets of optimism or fun is downright inspirational.  A lot of the quotes made by Kelly for us to all share are based on finding positives and celebrating the strengths we have, rather than sinking into a pit of gloom when we are knackered or in pain… Below are some examples! You can pinch any that you want…

 

 

On the theme of awareness, Little Broo and his lass have been hitting the streets doing a bit of fundraising for the Vasculitis UK charity, in advance of their upcoming efforts at the Edinburgh Marathon at the end of May. He wants me to make it clear that it was 90% her doing, as he was at work and joined her afterwards… An amazing £170.32 was raised bucket rattling in one day – starting at disgusting o’clock in the morning (6am) to get commuters on Cannon Street station in London! One wonderful gentleman gave her £20!

***PICTURE OF VOLDETOE A LITTLE BIT FURTHER ON – LOOKING QUITE GOOD!***

Fun things recently have included being told my INR levels – still being tested through the Finger Prick of Joy – are behaving enough for testing to move to fortnightly!! My only blood test this week was therefore for EVERYTHING for my consultant to check on. Things don’t look too bad at all – my CRP and LFT’s are a little bit worse than they were in March, but… I have dropped pred and have not had a dose of chemo last month, so I can understand that really. The one that looks a bit iffy to me is the high red blood cell distribution width vs low mean corpuscular haemoglobin – one being higher than ever for me and one being lower than ever. Not exactly massively excitingly so, but general trend would indicate I am possibly anaemic, despite taking ferrous sulphate on a pretty regular basis. To pacify anyone worried about my tendency to poke my nose into my blood test results and then visit the internet, I like learning how I work and, more importantly, I won’t be panicking or doing anything exciting medication wise without my consultant telling me to 😉 He did recently suggest I could stop the ferrous sulphate so this would maybe suggest otherwise!!

**Edit** Consultant is perfectly happy with everything – I was looking at a breakdown with excessive detail, but the overall picture is not concerning him at the moment.

Last week I got to see my favourite podiatrist (my only one as well!) for a catch up. Mainly to show her Kevin to be honest; she last saw me before Christmas whilst between admissions, when Death Toe was an absolute state, but still attached. She had a good check over everything and agreed my toes look the best they have done since I very first saw her, over two years ago now. Yay for drugs! Voldetoe is the only one still being a poo. See below… She lopped a scabby bit off that was catching on my socks and basically said I was ok to keep going as I am, and just to get in touch asap if anything starts to look suspect or changes quickly. For anyone who remembers the epic blue mottling, look at the difference! Only that one idiotic toe is still a vaguely blue shade all of the time and nowhere near as prone to being ice cold or painful. Good times!

 

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Voldetoe – look how much better he is!

 

This month was the start of me going back to work after many months off; so far it has not been too traumatic! I had many hundreds of emails, have had to change ten billion passwords and had to get IT to help me hack onto my pc at home, as it needs too many layers of passwords to connect to the network to be happy with anyone who had recently reset everything… It was quite exciting; made me wonder if professional hackers spend all day – night… Squeaking in glee at their own (IT’s…) cleverness.  So yep, phased return is going nicely. I haven’t collapsed dramatically or anything, and have remembered basic things like how to use a mouse.

The following isn’t technically anything to do with work, but a good sign that my brain is feeling more alert… There was a recent post in the support group discussing how to drop daily pred doses at a rate that people can manage, without suffering from walloping fatigue and joint/muscle pain as a physical backlash. It made me curious, so I had a little dig and tried to find out a bit more… It is a lot easier to reduce the dose at a faster rate if you haven’t been on them for too long at a high dose, but for some people that is sadly not the case. As well as a whole host of delightful side effects (moon face, insomnia and general weight gain and bloatiness (a real word from now) to name but a few!), long term steroid use suppresses your body’s natural steroid production. Cortisol is the human body’s natural equivalent to prednisolone, produced by your adrenal glands in response to illness or stress. For this reason, at around 7.5mg (depends for each person) you need to slow down the taper to allow your adrenals time to activate and get back to normal production. Personally, I noticed a sudden increase in energy (don’t be excited. I mean less sofa hours per day!) at around the 6mg mark, which I would like to think was possibly the point at which my adrenals got back into action, thus making me extra steroided up in an overlap situation (also a real phrase). Not exactly sure it works like that, but funnily enough, googling ‘extra steroided up’ doesn’t produce many peer-reviewed results 😉

ANYWAY: I made a spreadsheet 😀 I realised from this particular post that a lot of people who get to the 7.5mg (approx.) mark need to start tapering slowly (which I already knew), AND need a system to help remember where they are each day dose wise. One of the admin has previously told myself and others about a system she calls ‘dead slow and stop’ which has worked for a lot of people, particularly when dropping after a long time on higher doses, or if they are struggling to get below 7.5mg without repercussions. I volunteered to have a crack at making something to help the author of the post and my brain WORKED!! Also it meant playing with formula a tiny bit on excel, which alternates between being my most hated thing in the world and the source of hours of joy and faffing. Ta daaa! I love having outbreaks of dweebiness 😉

Dead Slow and Stop method from 7.5mg

 

 

The above and below were taken on the east side of Coniston – first proper BBQ of the year and a wander on a very nice sunny evening. Felt so good to be able to walk and carry things, and to not be in pain the entire time, or wishing I hadn’t said yes!

 

 

We also found a friend, who I named Eric.

 

 

Despite how awesome it has been to be able to get out and about more, I am definitely overdoing it with the walking/general ‘doing a thing’ some days. I am finding it very hard to settle on a consistent level that doesn’t leave me on the sofa whimpering the next day. My body really wants to move now – I am getting urges to dance and wander to the park. Some days I have two GP appointments and the walk down (maybe 100m?) used to have me in tears or asleep in the waiting room, but I am now managing there and back pretty easily, unless I am stiff from the day before. Today for example, my back is very sore and my ankles are stiff and sore, because I overdid it yesterday. I took it easy today and hopefully should feel up to careful walking again tomorrow, but it is hard to up your levels of activity whilst restraining yourself so you don’t end up a whimpering mess on the sofa :/  Some days it feels like my hip is trying to pop out >.< Knees are so much easier to crack with a gentle stretch… The only thing that seems to help move my hip back to where it should be, is some kinda of Pilates warm up back roll I learned a long time ago off Mum.

The exercises the physio has given me are largely based around strengthening my upper leg muscles again, so as to stop my knee and hip joints taking all of the impact when walking. It was obvious when she explained, but you cannot actually strengthen your KNEES! It is definitely working; so much so that last week she said I don’t need a follow up, and am just to get re-referred by GP or contact her if I am struggling! She is pretty chuffed (as am I!) with how quickly I am getting back to walking around normally, but was warning me against getting overly excited. Problem is, what for most people isn’t classed as exciting exercise, or particularly strenuous, is pretty tough on your body when you barely moved for over six months 😉 Although not to the level some people have to, I did literally have to learn how to walk normally again, as over a year of limping and walking with my foot squinted up to avoid toe-floor contact is hard to undo overnight. It also had a knock on effect up my right side, where I was using a stick for so long, which is why as soon as I was stable enough not to fall over I stopped using it!

Final mention must go to the pub. Or The Return of Kath in the Pub… I have ventured into such establishments a handful of times now since my release/Death Toe chop. We have an awful lot of them in my town, so it would actually have been quite hard to avoid them. It has also meant I can indulge in some live music, one of my all time fave things to have happen in my vicinity. Good sides to all of this? People time is ace. Music is generally ace – I am forewarned and can thus pick what I encounter. Catching up with bar staff who I haven’t seen for MONTHS is heartwarming and has even been a bit tearful in some instances. I feel a tad concerned they missed me for the wrong reasons! I am not drinking any alcohol for the foreseeable future due to the warfarin and general state of my system; partly I want to be able to confidently blame any dodgy liver function tests on the disease, rather than any intake of booze! I never drank frequently to excessive levels, but did used to like a few rums or gins… Equally though, I can happily be in a pub or around other drunk people without having anything, which leads neatly to: Complaints! On the most recent of my ventures into local nightlife, all I drank was a cuppa and a bit of lemonade – at most a pint’s worth over several hours – and I was struck with the WORST insomnia. 5am. Not cool. Lemonade is thus the enemy from now on. Coke was already on the banned list, due to me suspecting it has made me acutely awake on previous occasions. Tonic and lime or soda and lime from now on… Or soda and blackcurrant…

Now Sir Terry Pratchett and I are going to bed 😉