Optimistic eyes

I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.

Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining.  Mum and I went out a walk.  Or, as she calls it, at my pace, a stroll (definitely more accurate).  It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total.  A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.

It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good.  We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home.  It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills.  I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't.  I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case.  I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.)

However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!)  It came to one of those points where my brain knew what to do, and my body didn't.  If these didn't hurt so much, they would be almost funny... describing them is quite difficult.  I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) -  you know the motion, the movement and the shape, but you can't just do a somersault.  A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right?  Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like.  It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean...  Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault.  But it is.  As strange as it sounds - and it felt stranger! - my body didn't know how to walk down a hill.

Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals.  Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too.  This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably.  To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance.  My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain).  My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this?  Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending.  After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa.

I'm counting that as a win......

http://www.pinterest.com/gmun22/inspirations-for-life/

Lyme disease: one size doesn't fit all

Well, as planned today was 'A Day Out The House', mainly because I had physio - but we also stopped in at a couple of shops, then coffee and a bagel, and some time just wandering round the mall afterwards.  I did set multiple alarms on my two phones (one UK, one US) and put a 5-hour energy drink ON TOP of the first phone so I HAD to move to get it and pick up the drink to put the alarm off - it worked in waking me up anyway........ even followed by 30 minutes fighting the snooze button.

I actually felt better today than I have for a few weeks, generally (not shoulder-ly).  I'd run out of my antibiotics, probably about a week ago when I really thought about it - last week was one big blur of sleep.  I didn't really plan it, but I figured I'd see how I did without them and I guess the answer is still not good.  I did have a whole host of symptoms flare up - it's really hard to tell though, whether it is an active infection of borrelia bacteria, damage it has caused in my body in the past (which may or may not go away), reactions to chronic pain (which are complex and way more systemic that I ever could have understood before - especially when nerves are involved), or - at this time of year - a bug I might have picked up.  Or, more likely, a combination of any of the above.  

On the plus side, previous times I have stopped the abx, within days the Lyme headaches are back, and I feel like there is a pair of giant hands inside my skull, squeezing my brain - I didn't have those headaches this time, which I suppose is good, although instead I felt like I wanted to pull my left kneecap off, and the pain in my ankles, left hip and wrists has never been as painful as this week.  If just one day (two now - I guess if I still feel better tomorrow it might be a sign) of abx is enough to make me feel a bit better, that's also a big improvement. If it continues, it will be more telling.  Here's hoping!

I re-read this article on the Huffington Post's website today: "The search for global education: The 300,000 - Ticks" which was published last November, after the CDC in the US estimated there were an estimated 300,000 cases of Lyme a year - a significant jump from its previous estimate (which I can't remember right now, but it was far lower - perhaps a tenth of that).

It's an interesting interview and a good read for Lyme patients, or their family and friends as two Lyme Literate doctors discuss the complications of treating Lyme, and present their ideas on why it can be so difficult to treat.

One of the points in the article is that Western medicine has a strongly held belief - 'Pasteur's postulate'  that each disease has one cause and one cure (I have read of this being called 'germ theory' too - credited to Louis Pasteur) - not that every patient is different.  In the article, Dr Richard Horowitz, a well known name in Lyme circles, and an advocate for Lyme patients, discusses co-infections and other factors (e.g. a weakened immune system) which have to be addressed in order for patients to recover.  This is difficult to treat because each individual has different environmental factors, diets - lifestyles really; and treating each patient as an individual is far more appropriate than trying a one-size-fits-all approach.  

http://www.pinterest.com/gmun22/

It's a shame that something so obvious is such a revolutionary idea, but with increasing awareness about Lyme, within the general population, and the medical community, hopefully this will help create new treatment protocols, and more doctors will listen to those few doctors who are leading the way.... hopefully to a real breakthrough.

“We shall require a substantially new manner of thinking if mankind is to survive.”

   ~ Albert Einstein

Dance fairy

I think it's fair to say I spent more time asleep last week than I did awake.  Sometimes I just can't explain why, even in my own head - my body just takes command and I don't seem to have much control over it. It's usually when my Lyme symptoms flare up, my joints ache and my head begins to hurt - add that to everything related to my shoulder and I should probably be surprised I don't spend more weeks asleep!  Hopefully now with the really cold weather lifting (and finding another packet of antibiotics in the cupboard, after I thought I'd run out last week... oops...) I can wake myself up a bit more effectively!   I am now more than half way through my visit here, so this week - fuelled by energy drinks, caffeine, painkillers, and whatever else I can find to give me a boost, I plan to do more than just sleep!

I'm not exactly sure what, but I thought this little tea bag tag went perfectly with my 'dance fairy charm' and hopefully will subliminally inspire my brain to embrace consciousness and find some exciting stages to dance upon for the rest of my trip... metaphorically, of course.  My pirouettes are currently an exercise in 'letting go' in attempt to teach my brain to relax my muscles and loosen them up, since I can't stop the spinning and have to 'flop' at the end - it might be good for physiotherapy, but it's certainly not at any kind of performance level!

Here's to a (hopefully) much more exciting week than last week!

"Life is not about waiting for the storm to pass, it's about learning to dance in the rain."

    ~ Vivian Greene

Don't slip

Sometimes the wisdom of tea bag tag philosophies is questionable....

Bed-time medications say otherwise!

While I completely disagree -  in my case 'slipping with my feet' was definitely a very very bad thing, and I am sure there are MANY people who are agreeing with me here, after suffering the consequences of a 'slip' or fall; I do get the point. This one sounds more like something that has come out of a fortune cookie than my usual tea bag tag philosophies!

I will agree 100% that 'slipping with your tongue' can be highly damaging and upsetting at times too; but (especially right now - and from past experience), 'slipping with my feet' is NOT a good option either!

Moral of the tea bag tag - just don't slip!

For people with 'invisible illnesses' - who put in (at least) twice the effort getting ready and at least five times the effort just doing 'normal' things; it can be difficult when people, even well-intentioned, say things like "but you look really good" or "what do you do all day?"  This often feels judgmental, even if it is not meant as such and it can make us feel as if we have to defend ourselves to 'prove' that even as we sit and have coffee, or dinner, and chat, that it is always a case of 'mind over matter' - with a limit on the time we can 'survive' it.  The intensity of the invisible icy-burning metal rods being pushed into my shoulder like a torturous version of kerplunk doesn't go away when I socialise, I just have to ignore them as much as possible, and (when possible) socialise on days where they are a little less aggressive; the sparkling lights in the room, and the nausea that accompanies them have become almost normal - the nausea is kept mainly under control with tablets and the sparkling lights are now ok until they get darker - but sometimes it makes it harder to concentrate and take everything in as normal because of the mental energy required to suppress the urge to lie down in a quiet place and instead focus on the conversation. 

Sometimes I almost wish there could be some sort of running commentary for an hour - just to  explain what's going on in my body... maybe even 10 minutes would show how many things I'm actually dealing with all at the same time.  It might seem like I'm just sitting having a conversation, but I can also be assessing how nauseated I feel, and working out when I last took a tablet and when the best time to take one so I can eat dinner is; thinking about whether applying my pain cream, or a lidocaine patch would address the burning feeling that radiates from under my scapula and feels like it could burst out of my chest; the funny movements - neck stretching, arm extending and twisting - are because my hand is going numb and I'm attempting to stretch out the nerves to 'decompress' them and hopefully relieve the burning, icy numbness in my hand; I'm frequently adjusting my position, trying to get comfortable on chairs designed for people at least 2 inches taller than me (really!! my feet never touch the ground, it makes for very uncomfortable pulling on muscles); and trying to make sure I move when I feel spasms starting in my neck so they don't transform into a horrendous headache.  

On top of all the constant assessing, working out, and attempting to relieve symptoms, I am working hard to suppress the pain for a while, long enough to be social - considering different ways to ignore it, or ease it - if possible.  Going out anywhere is like going out with a baby. I have to make sure I have my meds, my TENS machine, my numbing patches, water; I need to have a plan so that I know how many tablets to bring - I don't like carrying loads with me, but I need to have enough to cover the planned time out, plus an extra dose (always a 'just in case' plan); I also have to consider how warm or cold I'll be - I can't carry a jacket with me, so if I don't need to wear it, I'll just make sure it's in the car, but if I DO get cold, I start to get shaky and then my pain increases, so I have to make sure I have something warm, but light, because if I'm walking about and it's too heavy, I'll get sorer faster (this usually just amounts in throwing half my wardrobe in the back of the car to cover all eventualities); and then decide whether I need my sling; if I have pockets, will they be enough, or should I also wear an infinity scarf....? (Again, usually the answer is just to make sure it's all in the car!)  So while I love socialising, going out for dinner, sitting and chatting - my brain has to constantly evaluate and balance the pain it feels constantly, decide how I can mediate it, and hide all of that while I also attempt to pretend everything is ok and I am having a good time......... and it's not that I'm NOT having a good time - I love spending time with my friends and family - it's just exhausting.

I found this on someone's 'chronic pain' board on Pinterest the other day, and it made me think about all that in more detail, and it makes sense in my head, when I split it up like that, why I DO get so exhausted when I do anything..... my mind never gets a rest (and that's on top of its normal never takes a rest!)

And even writing that, attempting to explain it on here (to myself as much as anyone who reads it); it feels very much like complaining - which is why, ordinarily, every day I do all that silently.  I don't want to be the person who complains all the time - and I try very hard not to complain, I don't think it achieves anything.  It can be difficult to distinguish between complaining and explaining, if the circumstances are wrong.  Since my blog is supposed to share the honest truth about dealing with Lyme disease, and dealing with my shoulder recovery, hopefully that all seems more like an explanation than a big long moan!

Going through Pinterest boards that deal with these issues is interesting to me because there are so many graphics, like the one above, and others I've posted, that help to visually explain what is going on.  In a way, it's almost comforting to see that so many people dealing with pain and/or invisible illnesses post the same, or similar, graphics.  I'm sure we all wish we weren't paying any attention to them, but the idea that it is 'normal' within all this abnormality to feel a certain way brings with it a strange kind of comfort.

Be kind, for everyone you meet is fighting a harder battle

   ~ Plato

I wish I could hibernate

I was really struggling for something to write about tonight since I woke up, ate, and fell back asleep again. Again.  In fact, again again again.  Really not feeling very inspired today - just sore and sleepy. Then I came across this, and I think it just says it all.

 I even got this PJ top for xmas... and I had it on today :-)

Unfortunately, unlike polar bears, I keep getting hungry and waking up to eat. Wouldn't it be great if all that over-indulging over the holidays really could keep us going until April?! Proper hibernation......so appealing..... I am definitely one of those humans!

And like the polar bear:

Although why I have suddenly become almost entirely nocturnal in a week, I have no idea.  At least I was usually awake for (half) the afternoon and evening before I developed some sort of seasonal, pain-related narcolepsy.  I wish it would hit me at an appropriate time - i.e. bedtime! Maybe it's just my body telling me I need to sleep for a reason.... I think that seems to be my lesson of the week.  Night night!

http://www.pinterest.com/gmun22/

LISTEN!!

I read an article towards the end of last year that suggested a number of things you could do every day/week to "make yourself a better person in 5 years".  I'm not exactly sure how measurable that is, or exactly how "better person" might be defined (ha, perhaps I understood experiment design and statistics classes a little better than I thought), but some of the suggestions seemed like good little 'challenges' to focus on.  

One of them was to have a computer-free day a week (technically think it was 'tech free', but I'm focusing on the computer/ internet part of that - phones allowed) so I decided to have 'tech free Tuesday'.  I'd like to say I was very disciplined and that's the reason I didn't write my blog on Tuesday night for Wednesday's post, but in all honesty, this news junkie checked BBC news on her phone, then checked two weather websites (that was life-threatening news, a valid excuse - we were experiencing a POLAR VORTEX, and yes, it was 5-layers-of-clothes-FREEZING like I have never felt before), I did read my book for a while and I did not put my computer on all day, but the real reason for no blog (because I really intended to write it after midnight, as I usually do) was because I fell asleep.  In fact, I think on Tuesday, I was awake for 3 hours total. It wasn't too hard not to put my computer on this week...

And there was a reason, so today's tea bag tag I think is a deliberate reminder:

"Listen and you develop intuition"

I was still pretty sore on Monday after my whatever-happened-at-the-weekend pain, but my shoulder capsule was so tight and giving me extra pain.  My physio did some extra stretching - always carefully and gently and with me in control - and then did some soft tissue work to try and free up the capsule a bit and ease the pain.  Lesson not learned.  The soft tissue kneading was sore, but I knew he really wasn't doing it very hard, and although it hurt a bit more than when at rest, it felt like the kind of sports-massage-sore that hurts a bit at the time and then the next day feels so much better..... so that's what I thought.  It didn't.  Actually, I came home from physio on Monday and I fell asleep from about 6pm-11pm - very unusual, and almost always a reaction to severe pain..... also, not really conducive for a normal night's sleep, so then, as expected, I was awake until about 4am.

I will blame that partly on my 'nap' (how long before it's not really a nap?  Can you have a 5 hour nap?), partly on my pain, and partly on the howling gales of an arctic storm that felt like it could lift the roof right off the house.  Rather than go downstairs in the dark and switch my ice packs, I actually just sat them outside on the windowsill for an hour, then brought them back in frozen again.  I think I found the one benefit of the cold weather.  It's nearly over though, tomorrow it has to "warm up pleasantly" - according to the weatherman - to a balmy 33 degrees fahrenheit.  That's 1 degree celcius - 1 degree above freezing. And, yes, it really is "warming up" - that will make it about 20 degrees warmer than it was on Monday, and with no winds - the wind chill made it feel about 10 degrees colder.  Anyway, I did lie awake and listen to the storm for a while, but I did go back to sleep.  I woke up at some point around midday and I always know the pain is bad when it drags me into consciousness; when I am aware of it before I am really aware of no longer being asleep.  Given the weather, I just took my tablets and went back to sleep.  I think I woke up again about 3pm.  Dragged myself out of bed - so sore I was limping on my bad side.... nothing like an injury to remind you how everything's connected.

I had some food, read my book, reminded myself of how much I love Jasper Fforde - and since I'm talking about words, I think I will need to pick a few of my favourite lines from this book and give them their own blogpost, the author's play on words is so clever and entertaining - but by 6pm I was asleep again (NOT a reflection on the book! I love the book!).  Woke up for long enough to get ice packs and make some tea and I was asleep AGAIN before midnight.  Which doesn't make for very exciting reading or writing.... 

So I think the lesson I did NOT learn earlier this week has to be repeated - LISTEN!! My body is screaming at me again.

Especially when a part of it feels like this:  

........................I actually wish my battery was charged that much!  

So the take-home lesson of the week is:

I think that's true!

Lyme disease: an amazing article

Back to the original purpose of my blog for today: 

 to help increase awareness of Lyme disease, especially in the UK

Yesterday the Herald (a Scottish newspaper) featured this article:

"Scientists and doctors unite to beat tick-bite disease"

The article is pretty short and to someone who has not spent hours, days, weeks, and months of their life researching, reading, fighting for treatment and battling Lyme disease on their own, it probably doesn't seem like such a big deal.  Basically, the headline says it all - scientists and doctors are going to develop guidelines to treat a disease that is increasing in prevalence... doesn't sound like anything ground-breaking is going on there...


But it is!! Believe it or not, there are NO official guidelines on how to treat Lyme in the UK.  Many doctors don't really know about it (my own GP, when I first mentioned Lyme disease and antibiotics said "I don't know if you use antibiotics for Lyme" as he reached for a book).  I also know a friend at home who has had two positive blood tests for Lyme (in itself a rarity, as getting a positive blood test is dependent on timing and the body's immune response) and was referred to a homeopath and a psychologist.  That's right... that's like testing positive for MRSA, or TB and being sent to a homeopath and a psychologist.  Bacterial infections are treated with antibiotics (or anti-microbials) - something that kills the little buggers.  If you could talk them out your system, I'd have been cured long ago!


Not only is the announcement significant, but the details in this short article are reported as clear facts about Lyme.  Again - that's amazing.  Prior to reading this article, the only place many of these pieces of information were discussed was in the context of the 'Lyme debate' - the use of the word 'chronic' in reference to Lyme disease is extremely controversial, but the Herald states what Lyme researchers have known for a long time - catch it early and one course of antibiotics usually prevents the infection spreading throughout the body, and therefore prevents severe illness; but if it is not caught early, it can affect major organs, cause chronic health issues and has even been attributed as cause of death (many more times than the one example mentioned in the article).


The article also states that it can be passed from a pregnant woman to her unborn child.  Again, this has been controversial and is generally denied by mainstream media/ infectious disease specialists; but there are many documented cases.


It also states that Lyme can mimic chronic fatigue syndrome symptoms and those of MS - hopefully paving the way for earlier Lyme testing in anyone presenting with symptoms that fall under the CFS umbrella. I do not know if this is still the case, but NICE (National Institute of Clinical Excellence) did, in recent years, issue specific guidelines which recommended AGAINST testing for Lyme in patients with CFS - so, again, to have that information reported as facts by a mainstream UK broadsheet is a breakthrough for Lyme patients.

That's only some of the symptoms of Lyme.  For a more comprehensive list and great information, check out the two UK charities who have worked so hard to raise awareness and educate people about Lyme: LDA and BADA-UK.

I'm not naive enough to think this is going to create a magic response, present a cure and 'fix' everyone dealing with Lyme.  Nobody knows how to do that.  But simply having this information out there makes it clear to me how much progress has been made in the UK in the last 6 years - Lyme has gone from something virtually unheard of to something people are now aware of, and medical professionals and scientists are accepting they need to deal with it.  That on its own is a breakthrough.

What can really help is sharing the article - the more people who are aware of Lyme, the fewer will become severely ill, as time passes and allows the spirochetes to infect multiple areas of the body.  If you read the article, share it with one other person - if everyone does that, awareness spreads even faster.

And let's hope the guidelines formed by this committee - which will include Lyme patients too - will be forward thinking, educational, and beneficial in treating and preventing the spread of Lyme disease.

In order to demonstrate how Lyme can affect people, I'm going to post some pictures/ illustrations from Pinterest that really do explain how Lyme (and other 'invisible illnesses') can make people feel.  They're not my usual optimistic, inspirational favourites, but they are important in illustrating how serious Lyme disease is, and how people feel and cope with systemic disease.

http://www.pinterest.com/gmun22/outofthelymelight-blogspot-com/