Invisible illnesses?

So..... first blog post in a while. Not the first time I've written that sentence. I'll get around to filling in the blanks, but for now I'm going to focus on the reason I started this blog (before the universe decided to try to prove I may have been a psychotic serial killer in a past life.  Hell, maybe I have a dozen past lives and I was a psychotic serial killer in them all...)  For now though, exhibit one:  LYME DISEASE.

As the name of my blog suggest, I did indeed start writing a personal blog with the intention of focusing lots on Lyme disease information and awareness.  And for anyone who has missed my Facebook or Instagram posting, or indeed the (wonderful) increased media coverage, May is global Lyme Disease awareness month.  I'll just stress that point:

 MAY IS LYME DISEASE AWARENESS MONTH!

Just to be clear. And I will get to that.  This may be my first post in a while, but if there is anything that I will battle my stressed, fatigued, and pain-addled brain to write about, it's Lyme disease awareness. (Yeah, 2016... not off to a good start.  A story for another day.)  There is LOTS going on in the world of Lyme disease this May. That means lots to talk about.

Today, I want to focus on something that began my own journey into the world of Lyme disease - my initial (mis)diagnosis of chronic fatigue syndrome.  You can read more about that in this post here: But you don't look sick or by reading My Lyme Story at the top of the page (part 2, well overdue).  

This past Thursday (12th May) was CFS/ME AWARENESS DAY (& now Fibromyalgia is included - there are so many similarities; cross diagnoses).

One key similarity is all 'diagnoses' fall into the category of invisible illnesses.  We are not obviously marked by what is wrong with us; and in many cases, our illnesses are not constant.  We have good days and bad days and sometimes, it is as confusing to us as to anyone else.  

Depression...... & all other 'invisible' illnesses
pinterest.com/gmun22

Except we can feel it.  And on the bad days, staring into a mirror with heavy eyes, grey skin and a strong idea of what we might look like when we are 90 (if we make it that long), it is like a stranger staring back at us.  We do not recognise that face in the mirror.  But we know we hate it.

pinterest.com/gmun22

 Norwegian CFS awareness group - Facebook page: 'Creating my Freedom: ME'd' created a wonderful short film for increasing awareness of CFS/ ME.  They use images of sufferers on good days and bad days, positioned side by side, showing that, in fact, maybe this 'invisible illness' is not quite as invisible as it seems.  People respond well to visual information.  For the most part, we understand the world by what we can see.  This is a powerful visual representation of how we present ourselves to the world, versus how we look on our bad days.


Please watch this short film, made by Josephine Rausand (from their Facebook page Creating my Freedom).  The only way I seem to be able to share the video is my OWN FACEBOOK POST - please click to view.  I will add a video if one becomes available.   

Here are a selection of stills from the video (but please, take the <4minutes to watch; the stills do not do the video justice:

                                                                                                                                                                                                                                                                                                                           
The comparisons show that 'invisible' illnesses are not really invisible; they appear invisible because we hide away. 

We hide away our weakest, most vulnerable view of ourselves. That person who stares back from the mirror bearing only a slight resemblance to the image in our heads. We do not hide away out of a vanity, or anything close. There is a need to shut the world out to protect ourselves; an instinct to cocoon ourselves, as sick animals do; it is a way to survive when we see no other way, and we have no medical support. It is self-preservation at its most raw. 

This shows it is not invisible. The few people who ever see us on our bad days are horrified,  shocked, surprised - usually they see us with our masks on.

pinterest.com/gmun22

And I am no exception. I hate having my photograph taken when I 'look ill' - but I have taken a few deliberately, planning to write something like this at some point..... 

Invisible illness?

Hopefully the reach of social media can help dispel the myth of invisible illness and increase understanding. It is not truly invisible, but sometimes, as with most severe illnesses, bed and rest are not even options, they are essential - what has been labelled invisible is more accurately described as hidden. 

"Learn from yesterday, live for today, hope for tomorrow." 

 - Einstein - 

Four years ago...

Four years ago on this day...

My first blog post of 2016 (actually my first post for quite a while) has been prompted by Facebook's 'see your memories' gadget that popped up on my feed earlier today.

I'm very aware this weekend marks 4 years since my first surgery. I have been mentally composing a post, ready to return to my neglected blog. It still feels like I need to recognise it - it's still not 'over' so there is still a rawness of sorts attached to the date. But today's caught me a little early, not quite off-guard, but not far from it. 

A lot has happened in the past few months that I haven't blogged about. I'm not even sure I know how to yet, but looking at my Facebook 'memories' today (did I mention I really hate that thing?! It seems programmed to pick the best *sarcasm* days to 'remind' me about....)

So.... 4 years ago today, these are my 'memories' - indelibly marked in my mind, but brought into glaring reality when staring out at me from my phone. Today, this is what I saw:

We were indeed in Lexington, Kentucky 12(ish) hours later, but little did I know what lay ahead... 

Sometimes, I think I am actually so very grateful for that blissful ignorance. There is so much we can cope with when we have to, I think definitely more than we can really imagine. When something big; something life-changing; something massively challenging happens, there are really two options - figure out how to deal with it, or don't. In other words, you beat it, or it beats you. 

That doesn't necessarily mean you can storm your way through life, stomping down every difficulty thrown at you as if you are superwoman; but it does mean you are in control of how you react to that challenge, looking at the bigger picture.  Dealing with it might still involve crying, screaming, yelling, sleeping, not sleeping -  generally struggling to figure things out; and 'figuring things out' doesn't necessarily involve a eureka moment, an epiphany that provides a working solution that you can just go with. Sometimes it means you just keep trying to figure things out, finding little solutions day by day until a big solution comes along.... or doesn't - sometimes day by day is the solution, and that doesn't mean you're losing, I have learned.  It pretty much means you're human.

(Official video courtesy of YouTube; not mine)

Reading back over that blogpost from 2012, it just feels so naive,  so unsuspecting of what was to come. I remember that feeling. It seemed like so long, from the previous June, and such a battle to actually get to that point - it was a battle!  I just had no idea how long the battle would last. I still don't.  But I genuinely was excited about the surgery. I genuinely thought it was going to fix everything. 

Then last year (apparently) I posted this, another link to this blog:

And it is still true. In a bittersweet way (the beauty of the words being the sweet part), this 'memory' is the one that stood out most. Not really to share on Facebook (hey, what an awesome time I was having a year ago.... because, really, that's supposed to be the point, isn't it? Facebook.... otherwise known as 'my perfect life'... surely we're all over that now?! We know better - right?!).  

Just the words.... they captured so perfectly how I felt, beaten and battered by things entirely outwith my control. Little did I know one year on, that list would have lengthened and I would still feel these words, as if they are living deep within me, flowing through me, as control remains nothing but an illusion; entirely out of my reach.

So, yeah, that all kind of hit me hard today. I was mentally preparing for the weekend - it's silly in a way, it was an arbitrary date, it really just marks another day passing, but at the same time, it does hold significance. I can think about that then.... 

But today, four years ago, we made our FIRST trip to Lexington, full of hope and optimism; and I guess, I need to search for that hope and optimism, and hope that somewhere deep inside, it hides, still there, ready to surface again. And I also need to remember I'm only human - and there are many ways to deal with challenges, and they're all ok, there are no magic solutions. 

 Hope is the thing with feathers 
That perches in the soul
And sings the tune without the words
And never stops at all
~ Emily Dickinson ~

Zen and the art of colouring

It has been a while since I've blogged.  There are various reasons for that, right now I'm just going to leave it at 'this year's not been an easy one'. I'm sure I will get around to filling in the gaps at some point.


But, it's a new month, and I have been thinking about my neglected blog; so hopefully it will be a successful and productive month; and I am hoping my blog - and writing - will help me get through it because it feels like anything that helps is worth it....... I am sure I'll get into that later too.

https://www.pinterest.com/gmun22/inspiration-for-recovery/

Recently I have been embracing 'mindfulness' in a big way - there are lots of different specifics claiming to teach mindfulness, or to help achieve mindfulness, but for me it is about recognising where you are and what you feel in that moment, identifying that, accepting it, dealing with it, and then allowing yourself to move on.

https://www.pinterest.com/gmun22/pain/

This specifically describes a very traditional method of mindfulness, but the key point is identifying how you
feel in the moment and finding what works for you  For me, that's not simply sitting and breathing, since
emptying my mind - although the ultimate meditation - just doesn't work!

https://www.pinterest.com/gmun22/just-me-my-thoughts/

Writing has always done that for me - it's always been an escape.  Art (as in drawing, painting etc.) has played a big part in it too - but since hurting my shoulder 4 years ago, art has still felt like more of a chore - an exercise in determination rather than relaxation...... sometimes worth it, sometimes not; but definitely something I still love to do when I can.

But over the past few months I have found the 'adult colouring book craze' to be the perfect compromise between my (limited) body and mind.  I honestly think it is the first time I have found something that allows me to relax and to switch off since I stopped being able to exercise - a decade ago.  I'm not creating the art, so it's actually more relaxing than drawing; I can get into 'position' - pillows positioned perfectly, both arms supported, my neck supported by my neck pillow, my pens/ pencils/ paintbrushes right next to me; sometimes I have Netflix or music (or um, noise, I've also become a fan of binaural and isochronic beats for pain/ sleep/ relaxation/ energy - not that I've found that one very useful.....); sometimes I am just thinking about colours - I can feel my subconscious ticking away, as always, my thoughts just flowing through my head, but they are not my focus.  I am lost in colours and designs and I feel relaxed.  Anyone who knows me knows that's not exactly my strong point.  My attempts at meditation are pretty much summarised in this old post: Meditation Failure.  All attempts: past, present, probably future - all of them!  So finding my zen in a colouring book is a pretty significant achievement!

https://www.pinterest.com/gmun22/inspiration-for-recovery/

And just as an extra bonus, my shoulder surgeon, hand surgeon, physios and doctors all approve - I am rebuilding neuromuscular connections so it's actual therapy on all fronts! (I've definitely stopped dropping things as much with my right hand....... not completely, although I haven't involuntarily thrown anything for a while); I'm getting better at staying inside the lines with my right hand(!); my left hand seems to be better at that - I am not sure if I am benefiting from improving my ambidexterity and exercising both hemispheres of my brain; or if I am just confusing left and right even more; but either way, it's pretty relaxing, yet beneficial rehab for both sides - I can just swap hands when one side gets a bit tired............ I've even managed to colour with both hands at once! That goes back to a bit more concentration and not as much relaxation though....

Oh, and I am absolutely recommending 'colouring books for mindfulness' to everyone I know for everything and anything!

                                    

                   

                      

Just a few examples

The secret of life is in art

~ Oscar Wilde  ~

Stitches, funky bandages, fainting and more...........

(I started writing at the beginning of the week; bits & pieces added throughout this week - remaining update to follow...)

I am opting mainly for a picture-story update today.

A week ago, I went back to the surgeon to get the remaining stitches out.  This is how they looked prior to the appointment.  I still hadn't seen what was under the paper stitches on my wrist:


I still had stitches between the thumb & index finger; the centre-bottom of the palm, and  the one along my wrist:  

And still loads of ink, making it hard to see!

Since the last visit, I had added a bit of style and colour to my incredibly fashionable splint - who knew they made designer plasters?!

Too fun not to share! Well, if I had to wear a bandage...
.... and colour therapy, right?!

And back to the clinic.........

The one on my wrist under all the 'sticky stuff' (going with that 'technical term', since I got a partial arm wax as it was removed) was pretty cool - the stitches were under the skin, hidden.  There were just two long 'threads' at each end, one was cut then the other pulled everything under the surface out with it (you can just see one in the photo, I had the 'oh can I take a photo?' thought almost too late).

This was pretty cool - the stitches were inside and each end had a 
thread sticking out like the one on the right - she just cut one 
end (then I took the photo) and pulled out the remaining 'tail'  

It looks fine, but considering it was stitched from the inside - and my comparison
is how amazingly fast and neatly the scapula incision (with 18 STAPLES) healed -
 it doesn't look quite as neat as I thought it would - yet.  Lots of aloe vera.

The physician's assistant asked me if I'd had any more "dizzy spells".  "Nope - it's never happened before and it hasn't happened since." .......... until 5 minutes later when she took the stitches out of the incision on my hand and the room  began to swim, I was suddenly drenched in sweat and throwing of layers of clothes around. Well, as much as I am able to 'throw'.  Or undress.  Mostly a scarf and cardigan awkwardly hit the floor.  At least I didn't.  

I DON'T KNOW WHY!!!

BUT I DON'T LIKE IT!!!

Stitches out:

If you zoom in, there's still some in there, apparently
they "grow out". Not especially fond of that info.

The one between my thumb and index finger had been seeping (bleeding really) even while stitched.  My physio told me to clean it with soap and water and keep it covered.  The one on my hand also bled - it wasn't totally joined and pulling the stitches out hurt more than any other time I've had stitches removed. Actually, on all previous occasions (4 or 5) I've never felt more than a slight pull.  Maybe that's why my head started swimming........?  Also not something I've experienced before and I'm definitely not a fan of that.  I've had the 'blackness' that I've written about before, usually from pushing through severe pain, but that's an entirely different sensation.  It still wasn't the sorest part of my body though - unfortunately 95% of the time, my right scapular area still wins there.

HOWEVER..... Unfortunately, this week, my left hand, my 'incidental' little injury, my 'minor' surgical procedure; my 'nothing to worry about - let's just get it over with' little old silly 'wrist sprain' with the simple, happens-all-the-time surgery has been making itself felt emphatically.

The day after the stitches were removed, my hand swelled, with hard lumps; felt like it was on fire; the incision sites became more painful; and I found it more difficult to move (as in while pressing hard and painfully with the other hand 'difficult to move' because of hard bumps; not a pathetic 'oh it's a little bit sore I can't do that exercise' hard to move. Just to be clear!) 

Top: swelling & discoloured hand  (not quite so clear here)

Bottom: All natural, late-night homemade antimicrobial concoction on dressing:
allicin, colloidal silver, tea tree oil and samento

Which worked really well!  The next day, it looked and felt so much better:

Really!
Swelling was reduced, not as hard, the redness was gone & the incision at my thumb
looked like it was properly healing after a few days with paper stitches

Panic over; disaster averted!  Or so I thought...........But that's pretty much where I ended this blog, and typing takes ages right now -  and sleep is much needed (although not forthcoming!) so until the next one........

Wrist surgery: I have gory photos!

I'm going to let the pictures tell most of the story here - it's much easier just now!


First though..........


Photo 1:  Day before surgery......... not knowing exactly how I was going to feel, or what I was going to be able to do, despite feeling knackered I went out with my mum.  I decided it might be the last time in a wee while for 'real clothes' (ie not sweatpants), make-up & my hair done properly. Vanity?  Maybe..... but really more: 'it makes me feel like ME ' than I care what anyone else thinks. It's taken a while to get to here, this is a reminder I have done it before & I'll do it again.  And it was a good decision!  Not sure when I'll manage buttons again; or sleeves with cuffs!  And even pulling leggings up with one semi-functional arm isn't easy when it can't reach all the way around my body!  Sweatpants and ponchos are my current fashion statement! (Yes, together.) :-D


Photo 2: Hospital gowns just aren't that flattering!  I would totally redesign these.  Plus they just give the illusion of privacy & then different people still have to stick different tubes/ sensors/ needles etc through all the holes that absolutely do *NOT* sit in the right places on me.  I am not a 'one size fits all' in anything!

The difference a day (& some make-up & sunglasses) makes!

Briefly: surgery went ok.

Pre-op:

Not much point in looking ridiculous if  you can't laugh at it (I'd redesign those hats too)!

And the IV into my SORE right side did hurt, but I declined the offer to have it in my FOOT
- I'll stick with a wrecked upper body & not invite other areas to join in..... 

Post-op dressing & FAT fingers:

On my inspirational pillow!

My friend actually sent me this pillow after my first surgery for my 30th birthday
- the entire pillow in a massive parcel from Scotland to the US.
 Made with one of my very favourite quotes - it's seen a lot in those 3 years!

Ice became my favourite thing for a few days again!

The surgeries were:

• carpal tunnel release 
• a nerve release
• deQuervain's release
• a tendon release
• trigger finger (thumb) release
• a tendon release; should stop my thumb getting 'stuck' in position
• wrist arthroscopy
• "cleaned out a load of junk"
• "junk" = inflammation & frayed/ damaged/ dead tissue

These all essentially create more space in an area so nerves/ tendons/ joints aren't being 'squeezed' by too much inflamed tissue making movement extremely painful/ impossible.

My surgeon has said the surgery went very well - and he was pleased not to find any torn ligaments, which he thought were a possibility.  

Incision photos below  

I must admit, there's something a little satisfying about these for me.  My shoulder was so neat and barely bruised with very little swelling with both ops - even the scapular one, which was major surgery...... ok, I have my 18 staples photo but it really doesn't look like it FELT.  This............. this pretty much looks like it feels!  

After I showed my Dad the incisions on Tuesday, he said "Now I understand why you're sore." (And made appropriate "ooft" noises".)  My Mum said - "Did you not believe her?!"  So............ justification! This HURTS right now!

(P.S. My right shoulder/ side still HURTS too............. and it's pretty useless. I suppose it wasn't magically going to come to life because the other side is suddenly totally out of commission!  It's trying - I'm trying -  really; but 'we' were trying before this; always trying - and it's still as useful - or as useless! - as it was last week, or the week before.  My head is becoming as useful as my feet - really! - but I have consciously had to stop using my teeth or I am going to break them on something!  It's pretty frustrating.)

Each cut is a different thing from the list above (there's still a lot of marker pen; I think the surgeon just liked drawing!):

Bottom of thumb: trigger finger release - there are stitches you can't really see for the ink (& blood)

Base of palm: carpal tunnel release

Quite a bit of bruising, even on my hand, which is kind of unusual for me as generally don't bruise much - more justification for the pain I have!  Got lots of arnica!

deQuervain's release along lower forearm/ wrist - still covered

Arthroscopic incisions on the top of my hand

Surgeon removing the stitches from the arthroscopic incisions

Incisions/ stitches re-covered after surgical dressing was removed

Custom made splint

Watched as the therapist made this, shaped it to my wrist/ thumb; reheated
the plastic (in hot water) again, re-molded it to my wrist; fitted it, reheated to cut
to size; repeat until the perfect fit  -  it was pretty cool!

Back next week to get the rest of the stitches out and the splint readjusted.  

And I should make a confession....... I don't know why; it's not the worst pain I've had - it wasn't even the worst pain I had right then; but after I'd photographed my surgeon removing my stitches, had a good look at my gory incisions and bruises (& I know they're not the worst - but I was expecting 4 dots and two 1cm incisions - that's what he drew on me in the appointment prior to surgery!); we went through to the therapy room where I'd get my splint, sat down and kind of suddenly, I said to my mum, "I don't feel great."  She told me to put my head down on the table.  Less than a minute later, she told me to put my head between my legs.  Ugh.  There were OTHER PEOPLE there.  I know I get severe pain responses with my right shoulder - but that's usually when I'm trying to make it work hard - or someone else is.  This just washed right over me for no apparent reason until the room was swimming.  Fast.  Head down, the therapist (who was doing about ten things at once) came over pretty quickly.  Next thing I was 'assisted' through to a separate room and laid on a bed with ice on my neck and my feet up........... and given a (compulsory) lollipop!

Note my Mum smiling!

(Just because she's the one who usually passes out!)

The quote from my pillow -  always good advice - words to live by: 

“Learn from yesterday,

live for today,

hope for tomorrow."

   ~  Albert Einstein   ~

Here I go again...........

Wrist Surgery


As I sit and type at 7.30am - for a change, after I have been asleep and not before! I am all ready to leave shortly for the surgery centre - today I am having surgery on my wrist.  I am up early, ready (no makeup, no 'beauty products like perfume/ body cream etc.; no food and nothing to drink) - incredibly sexist comment - this must be what it feels like when a man gets ready. I did sort out my clothes last night - although still have no idea what I'll actually be able to put on afterwards - but I don't even think it took me 5 minutes to get ready. Add a couple more minutes for when I brush my teeth.

The reason I am ready early is because we have snow forecast.  Between 3 and 5 inches have to fall -"starting around the end of the morning rush hour".  At my last appointment with the surgeon, it took us 2 hours to do a usually-40 minute journey because we were driving through an ice storm of freezing rain.  Well, crawling really, long with everyone else.  I don't have to be there until 10 and usually leaving at 9 would give loads of time, but according to the weather-travel man, this is what Rt 202 looks like right now:

And that is the road we are going on.  Actually when I woke up my first thought was
'has it snowed yet?!' and I looked out the window and it hadn't, I felt relieved - we know it's probably not going to be great on the way back later, but I definitely want to get there on time. Now, everything is white outside my window.  I reckon about 1/2" of snow has fallen in 20 minutes.  And believe it or not, I'm just ready to go when everyone else is ready! (I am always forgetting how long things take me just now and constantly running late.)


Anyway.............  A few of my friends have asked me to update them on the wrist surgery, and I am sorry for not writing personal replies to every email - I hope this little update will cover it!


It's really not a big deal (so I'm told).  When I fell and landed with my weight on my left wrist - my 'good' wrist - last November I joked that at least I hadn't made the other side worse.  After calling it a sprain for 4 months while the shooting pains from elbow to fingertips intensified and became more tingly, and constantly achy; and while my ability to do....... pretty much anything involving any strength from either arm........... all but disappeared; my physio and I decided perhaps it would be wise to see an ortho.  

I can also advise - if you have an injury, and you fall, do everything possible to throw yourself on the already injured side.  ONE good side is definitely a necessity (yes, two would be better).

Initially I saw a general ortho, he ordered wrist/ arm/hand/elbow x-rays and MRIs but nothing obvious showed up.  I wish I could say I take comfort in that, but it has unfortunately happened in the past.......... for example when the rhomboids and trapezius detached from my scapula! And a few times over the years with gymnastics injuries - usually broken bones that didn't show up, but became apparent later.  I'd like to think anything major would show up, but I also know not to place all faith in medical imaging.

Back to the wrist........ after more physio, some exercises, strength building etc., it still was not getting better and I was sent off to a hand specialist.  I opted to continue with PT for a while and see if it would continue to improve - there are definitely areas that were painful initially that are improved now; but there are also areas that have been sore the entire time, and movements I can't do with it - especially involving my thumb.  When I saw the surgeon again a couple of weeks ago, we talked about surgery again and he told me what he expects to find inside.

He also said - and my brain keeps telling me -  it's really not a big deal after the other ones  I've had (although I do keep reminding myself it WILL still hurt, since he will be going in through multiple incisions and cutting stuff up - I don't want to wake up in recovery and think......... hold on a minute, this one wasn't going to hurt.... and it does!!  But it certainly shouldn't be as bad as the last one even, never mind the first one - and it should heal much faster).  His plan is to go into my wrist (on the top) arthroscopically and clear out any inflammation or dead bits of tissue that may have accumulated, and - he thinks - probably repair a couple of ligaments that are possibly torn a little, as well as 'releasing' a couple of tendons around my thumb - it seems they are being compressed, causing pain and the tingling sensations.  Somehow they just make a gap a bit bigger......... I'm not exactly sure how, and I'd prefer to learn about that AFTER it's over - works better for me, for the gory bits (which only become gory once I have the surgery scheduled and I will be the one in that OR; up until that point, everything I read is fascinating!).


This week, my lower arm and hand have sporadically been swelling up and producing little bruises.  I do think it's sorer than I really think it is (if that makes sense) because I'm on such strong medication because of my right shoulder, I shouldn't really be able to feel minor pain - but I can most definitely feel this, which is not good.  Even my physio can feel it grinding and clunking and has taken to making his 'puzzled face' this week with the sudden bruising - after 4 months!  And I don't really bruise........  Hopefully the surgeon has it spot on and will just go in, tidy it up, I'll be sore for a couple of weeks and then I should be fine - doing PT and strengthening it, but both surgeon and PT think that this will 'fix' things; I will have minimum, if any, pain after it has been fixed - and it will be/ should be fixed; he doesn't expect me to have any further problems with it as long as the surgery goes as he expects.

I feel that it is just screaming at me: FIX ME! and - let me stress this very carefully - I NEED ONE GOOD SIDE!!

Anyway, hopefully all goes to plan and I will sleep through most of the weekend and feel fine (on that side of my body) pretty quickly.  I do go back for post-op on Tuesday for him to check it and change my bandages and hopefully he will then give the ok to start PT after a week.

So that's a pretty boring blog post, an update, as promised, I suppose.  When I can, I will update again/ be in touch.

Have fun with those limes! ;-)



If I've learned anything, it's this -and I can't wait to get mine back; I am working SO hard on it:

The first wealth is health!

~ Ralph Waldo Emerson