Friday, October 20, 2017

It's October!

Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. So it's probably not necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My:  'I can't believe I last posted in AUGUST!'

I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!)  I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October πŸ˜€.... mainly by organising and posting the assortment of photographs I've been planning to use.   Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). 

So, an overview of the past 3 months...

When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan (by that I mean I had about a dozen medical appointments) and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's October!!

We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word plan has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to listen to your body and trust your instincts when it's your body that you can feel.... screaming at you!

So right now, and for the past several weeks, physical therapy has been purely working with 'how I feel today'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of course it's affecting everything!  

But my PT can "feel a difference" in all my muscles  (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a HUGE validation of something usually only I can feel - most importantly,  it means it's working (torturously!).

So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)

And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here,  who offer such fantastic support - even after all this time.

The photos are more interesting, I promise. And coming soon....!

Friday, August 4, 2017

Simple things...

This year I started off talking about honesty.  I had nose-dived into the deep, dark rabbit hole of a Lyme disease relapse. I want to paint a genuine picture of what that really means - recently, a few articles followed celebrities announcing they had Lyme disease and called it a "fad disease" (or similar). It is not. I haven't written as much as I would have liked, to date, but hopefully each post, shared with honesty and a little trepidation, dispels that idea,  way before it enters any cultural psyche. Nobody with Lyme borreliosis would wish this disease on their worst enemy, let alone view it as 'fashionable'.

I started feeling the too-familiar, overwhelming, systemic fatigue; intolerable levels of pain, in my shoulder and throughout my body; a lot of 'brain fog'; and an increasing inability to do very much at all. Simple necessities - like a shower - left me completely floored.  It felt like I'd erased years of hard work and treatment.

Since I came back to the US and restarted specialist treatment - Lyme and shoulder PT - I have felt overall more optimistic.  I have wonderful physical therapists and we have finally started to see tiny steps of improvement (even more importantly, they say 'we' & use words like 'team' - & they actually talk to each other.... how sad that is so remarkable). 

I have a one-of-a-kind Lyme doctor, also a 'primary care' doctor (like a GP, but who 100% lives up to the better label!) who genuinely cares for me, covering every aspect of my health - and essentially, is really making inroads with tackling my Lyme relapse.

But, as I've said before - it's hard. Managing a PICC line (peripherally inserted central catheter - it goes into my arm and sits inside veins, eventually resting close to my heart so my medication gets 'right in there') requires careful care.

From Wikipedia 

 I have 2 'tubes' coming from my line and they need to be flushed with saline and heparin twice a day; plus I have to infuse with my IV medication every night, and keep on top of oral meds as well. Obviously it's critically important to keep it clean, dry and carefully wrapped.

My nurse took this for me during a dressing change.
Ordinarily, it's always covered!

Lyme treatment is pretty brutal - as I've mentioned elsewhere, and in the 'Lyme pages' on here. Details for another post. 

Invisible illness?

On top of that, I have physiotherapy three times a week - we have to be careful with the PICC, which is in my 'good' arm; and focus on my right (injured) side.  We're still working on connecting my brain with the muscles around my scapula and getting them to work. Since I came back, the positive results have really helped me push forward.  Waiting 5 years for some positive results is a really long time! So those positive baby steps have felt like giant leaps.

On a good day:
Gravity... stretching lats while supporting body;
 this pops my ribs back into place too;
 aim is hand on the floor -'above my head'.
Physio's aim is:
 1) to hold me up & not let me push it too much
2) to NEVER let me attempt to backwalkover out of this
because the good hand does touch the floor now
Me: "I'm sure gravity will just carry me over..."
 Him: "NOPE" *sits me back up*

(For perspective: 
Once, this was barely a stretch for me;
Now, this is the best range of motion
 in my arm for 6 years -still assisted.)

But this past week, I plateaued. Right from the beginning,  they told me this would be the normal pattern.... except it wasn't. I didn't plateau so much as fall right back off the cliff and start climbing from the bottom again.  So many unknown issues were discovered following that first surgery. 

So, really, this is good. It's FANTASTIC!  Finally, I am doing what they expected.... I improved a little, and I've stayed there - no tumbling back down the cliff.

BUT - no baby steps this week AND it's been a horrible Lyme week, with lots of herxing and general 'I want to crawl under the covers and come out when it's over' days. It turns out that's not a good combo, apparently...

I think 'meltdown' was the word my Dad used... 

Thanks Dad.

 Most of the time (like 99%) my Mum is my chauffeur, coffee buddy, shopping buddy, pedicure buddy; my chef, nurse, pharmacist.... all round carer & companion.  (When she gets old, I feel like the routine is already established, we'll just switch roles. Although hopefully there is A LOT of living for us both before that happens!! *EDIT: she read this & didn't know whether to laugh or cry....!)

But today she had a migraine, and my Dad was home in the afternoon... (he's delighted about that, I bet).  I had no appointments today; I had a 'to do' list - not a general 'I hope to do this soon' list, an actual 'wash my hair' - because I'm not even going to write how long it's been since I did that - and tidy up just a little and some other very necessary *simple things*. 

Not that simple. I struck out at number 1 (and so the 'meltdown' (this is not my word!) took over. The 'I can't do anything; I hate that 'do nothing' is an actual 'to do' thing because it has to be.... I can't do aaaaaaaanythiiiing......' kind of .... um, ok, meltdown, I suppose.  

Ultimately, with the male need to *do something* my dad said he would wash my hair (my skin is sensitive to the adhesives - this sensitive skin is another fantastic new side effect of the new Lyme meds *urgh* -  so I have a healing sore just under the PICC line and I can't stick the adhesive plaster over it. The insertion site us covered, and it's bandaged instead right now; but - while the full adhesive dressing isn't waterproof, it's not fabric - right now I'm reluctant to sit in a bath and get condensation on my skin/ the fabric dressing etc.). 

 When I was severely ill, before I even knew about Lyme disease, I used to get my hair washed over the kithen sink, lying on the worktop...

... in a different kitchen. I made it downstairs to see my dad setting up his 'station':

Creative home hairdressing :)

A gym/ thick yoga mat over the hob, so I could lie on it, and also because I'd wailed something about the hard surface and a sore shoulder blade - it was to make the worktop "softer". So it turns out even the simple things can make you smile on a really, really, rubbish day. And more amazingly,  my dad actually embraced some creative thinking (that was NOT football related).

And while he played hairdresser, 'supermum' had woken up and was ticking off the 'tidy up' part for me. So, with clean, wet hair, and puffy eyes, I collapsed back into bed, in a tidier room, where I'd quite honestly like to say I'm resolving not to move for a day or two - until this is over - but I've got physio tomorrow afternoon.... yay!


I'm not sure who this quote is attributed to, but I'm attributing it to my mum here, because she says it constantly:

"This too, shall pass"

*EDIT Physio was kind of tough... then I got a migraine from hell. In between, I was up, out, dressed, and so (always good to take advantage of that!) Mum & I had coffee & went for pedicures - it's always nice to do something 'normal'! However, as I collapsed into bed,  and she later helped me with my infusion, she said, "This too, shall pass".... have you been reading my blog? "Recently? A new post? No..."
Too funny.

Wednesday, July 12, 2017

June: Plans, PICC lines, & physiotherapy

I did say May was spent forming plans. I really intended to write in more details, but my brain had other ideas - mainly SLEEP.  May was pretty exhausting - filled with medical appointments; balanced by record-breaking snoozing.  Time flies though - especially when you're unconscious 50% of the time!

June saw those plans being put into place, so here is an overview.  Of course, I have more details, but I'm trying not to post a novel here, so details to follow....  I can definitely say that, despite the hellish processes, things are overall more positive than they have felt for a long time.  There is still a long way to go to reach that light at the end of the tunnel, but it's been turned back on again.  I have a supportive medical team around me - PLANS(!) - and I feel there is hope again. And that is probably the best thing I could hope to say and feel right now.

Love this!

1. Physiotherapy

This is the easy one, so I'll start here. In short, I still need a LOT of one-to-one, careful, 'active-assisted motion' physiotherapy (or 'physical therapy' - since I'm back in the land of American English).

Since I arrived in the US, I've seen my specialist scapular PT; my nerve-ortho's physician's assistant (he mainly sees patients for procedures / pre-surgical appointments; his PA is fab); and seeing my regular physio a few times a week, I would say physio is going well.

 'Well' being relative to my entire injury; 'well' is nowhere close to 'functional' yet.  'Well' is tolerating careful, gentle exercises, focusing still on increasing neuromuscular pathways and increasing movement and strength without increasing pain. It's a fine line. It's an incredibly difficult balance to find, but all things considered, 6 years on from my fall, I can finally say progress appears to be taking some (very tiny) steps in the right direction.

PT motivation required!
(some honest days!)
(mainly because they didn't have 'cap & sunglasses'!)
I think they help!

2. Lyme relapse: PICC line & IV antibiotics 

It was a unanimous decision (Dr, me, & my mum - all prior to any discussion) to address my Lyme symptoms as aggressively as possible, with IV antibiotics for the first time. My symptoms have drastically increased and I have majorly relapsed -  I would say I feel as bad as when I first started Lyme treatment. IV is the way to hit the infection the hardest - in combo with some other meds.

My response to the first week of treatment 100% confirmed it's been the right decision. There is also a possibility a resurgence of infection may be a contributing factor to my shoulder/ upper body pain (borrelia bacteria like scar tissue.... I have a whole load of that).  This also means certain other therapies - in particular, aquatherapy, for my shoulder, have to wait since the PICC line has to be protected (kept clean, dry, no massive weight-lifting etc.... ha ha) to avoid any risk of infection.  Some things are just impossible to do at the same time.

It makes more sense to focus on healing my entire body, and hopefully reduce some pain levels/ pain in specific areas first. This means - in the PLAN - I *should* potentially remove a huge stress on my body, and be able to battle 'just' the shoulder issues instead of my body fighting battles on too many fronts. If it does reduce pain that will be a major bonus.

I continue to see my (awesome) physio three times a week and we work on making my muscles work individually,  and gently strengthening them - that's way more intensive than it sounds!  So while I can continue very specific shoulder work, the two things are inextricably linked.  I'm trying to keep things as balanced as I can - physio is essential, but recovering from this Lyme relapse will hopefully make everything easier (used relatively!).

I won't lie, this is hard. On physio days, I wake up and so many times I have thought 'I can't go today.... I could cancel...' - but I grab one of those damn T-shirts and I go. And I survive, even if I do often fall asleep afterwards...

And.... to the PICC line. I think, right now this is easier to summarise in these photos:

PICC line explanation
 from Wikipedia

My first week with my PICC is below, in a photo collage - going with 'the picture is worth a thousand words' thing.  And, yes, my bruises are absolutely worth documenting because I don't actually bruise that easily & having the line placed was not fun!  The doctor told me my veins were "uncooperative" and apparently I have "small veins".  I did however take more offence at being told my muscle was small..... of course I just couldn't stop myself - "I used to be strong.... I was an acrobat... I used to lift PEOPLE!"  Priorities.

When a doctor apologises several times during a procedure, and again afterwards, explaining it "shouldn't have taken that long" - and his PAs/nurses begin to feel like they're becoming cheerleaders, repeating, "you're doing SO well... SO well..." I really don't think it has the desired effect! Honestly, it wasn't really that bad (once it was over!), it just definitely was 'more' than I expected.  But - it's in, the port is sewn to my skin (black stitches through the holes on the purple bit); and this should mean it's there to stay for as long as I need it. Fingers crossed!

I have way more to say about that, but I think this works for an overview:

PICC line: week one
(There is a clear plaster over the insertion area so it can be monitored.)

* I wrote most of this a few weeks ago - it needed some editing, but it does pretty much sum up June.  However, here's my most recent additional comments a few weeks into this treatment.

antibiotic treatment (in combo with other stuff) is now heading into week 5. It really does require an entire post.  I'm just adding a little up-to-the-minute update because I am not exactly in super-efficient mode with all this! (Whatever the total opposite is - that's me, except with lists because apparently some part of my brain still thinks I might actually accomplish multiple things a day if I write them down.  I consider it living in hope....! However, I have come to terms with the fact that the lists are more 'hope-to' lists than regular 'to-do' lists.  Mostly.)

Briefly, after a few more weeks, I still feel strongly that the IV antibiotics have been the best decision / option for right now.  This is confirmed by the fact that my symptoms have been exacerbated in (horrid) ways I absolutely did not anticipate and I am well and truly floored by this treatment. It is hard..... It is harder than anything I have ever done before (re. Lyme treatments) - and I really thought I had 'been there, done that & (literally) got the Lyme T-shirt'.  Ultimately, this hopefully means I am attacking things in a far deeper way than I ever have before.  So, it continues.  It is a strange relief to realise many seemingly disparate things fit together; but it is too overwhelming to look at the big picture right now.  I am very much surviving one day at a time - and hopefully each day that means I am taking a step closer to where I want to be.

An old favourite seems perfectly fitting:

"That which does not kill you makes you stronger"
~ Nietzsche ~

Wednesday, May 31, 2017

Lyme brain, 'pain scan'

As the saying goes, 'a picture is worth a thousand words' & this one didn't just make me think of that phrase; this picture felt like it jumped out of my screen: the perfect embodiment of the 'monster attacking my head'; its tangible horror captured in perfect detail. It was like staring at an image of my own, physical, pain.

For 12 years and 5 months now, I have suffered from almost constant headaches, something very common in Lyme disease, probably one of the most ubiquitous symptoms (many symptoms vary, especially with chronic Lyme disease - it adds to the difficulty in diagnosis when doctors are not familiar with it, and the patient doesn't recall a tick bite) - headaches are - I think I can say - universally experienced, and despised.  I have had good spells, where the headaches have dulled; but the worst, completely debilitating  headaches come when I feel the little spirichaetal buggers have rebuilt their army, regrouped, devised a new strategy, and start waging an aggressive full-on attack on my body again. When my headaches are at their worst, I have long describe them in these very words:

"It feels like giant hands are inside my skull, squeezing my brain, from the base of my skull, wrapping up and round."

So when I was scrolling through instagram this image, posted by a Lyme awareness group grabbed my attention:

(From 'inourshoesproject' instagram page)

Maybe it seems silly to feel so... connected, horrified, surprised... stunned?... at one image. But looking at this says so many things to me:

- That's my head!!
- I could have drawn that
- If you could photograph my pain, that captures every.single.detail.
- ... MY head!!!


But overwhelmingly, it says:
SOMEONE UNDERSTANDS... like really really 'gets it'.

I am incredibly sorry that someone does - and not just someone - I'm not sure where the image originated, it seems to have been shared on various Lyme sufferers' social media accounts.  If scans could show pain - that is a Lyme brain, in perfect detail.

 It is very common with Lyme, as with other 'invisible illnesses' that friends and family struggle to understand how ill a person is - often people 'don't look sick' and others have difficulty matching appearance with 'behaviour' (/symptoms) - to simplify.  We are taught to trust what we see, and we have difficulty when there is a disconnect there.

Images like this one, I hope, help people to understand a bit more, by providing a visual depiction of pain. We know that we cannot see every illness, but we understand the severity of some 'invisible' illnesses. There are still illnesses - and Lyme disease is one of many - where genuine awareness is still required, and increasing understanding can help with support, and be a positive factor in many ways.  

'Invisible' can be hard for me (& others) too. Nobody wants to 'look ill'; but everyone - healthy or ill; on a life high point, or facing major challenges - wants to be understood.... and it can be difficult when people rely on what they see over what a friend or family member may try to describe.

The best thing anyone can do for a friend - whatever they are dealing with -  is just to try to accept that only they feel it, and the best thing you can offer is your support. In some cases, it is appreciated more than you'd ever imagine. 

 May has been Lyme disease awareness month and my blog has been rather neglected - with good reasons. Cutting a very long story short, for now, in May I travelled back to the US, for treatment for a pretty major Lyme relapse; and also for critical treatment for my shoulder - treatment I still can't get at home due to the complexity of the injury, the new surgery, the lack of specific 'scapular physiotherapist(s)' & also the absolute impossibility of finding someone who knows about Lyme AND crazy shoulder injuries - and just as impossible, finding a team!

So April was spend getting stuff organised at home - hard right now, my health has really nosedived. May has been spent seeing all my doctors and therapists here, and making a plan.  Right now, it just feels so damn good to HAVE a plan!

Hopefully I'm 'launching'!

Tuesday, March 14, 2017

It is always possible to be kind...

Invisible Illness: Be Kind!

I'm finding just now, through various channels, something is constantly coming to my attention. Two words really: 
INVISIBLE ILLNESS. It's something that we seem to accept, as a concept; as a definition - but WHY? - why are we 'invisible'? Because we're not really - we're everywhere.

Do you know someone with arthritis, or rheumatoid arthritis? With any kind of medical fatigue? With early stages of MS? With Fibromyalgia? ME? Someone elderly - perhaps not with a specific illness, but who has slowed a bit with age and is frustrated with their own slowness?  Or with heart issues - heart failure; angina, post heart attack? ... There are many examples connected with the heart that slow people down....

It may be a chronic pain or injury - pain in a knee, ankle, hip - a necessary slow walk; or something acute, but not requiring crutches.   Acute things tend to pass us by a lot - we are 'inconvenienced'; we temporarily may pass comment on how hard it is, to deal with; or how we "can't imagine how people can live like this"  - I've heard those words, many times, from countless people.  And, in that moment, people mean it; they have a glimpse into a world they do not usually inhabit.  But only a passing visit - and as with most pain, our mind forgets it easily and quickly.  The lesson seems to be fleeting too. By the time 'one' is in a hurry again, the acute injury, and all that came with it, is long forgotten.

There are also many people struggling with all kinds of mental health issues, permanently, who may take 'too long' to decide on something seemingly simple; struggling, for whatever reason, to reach a decision - perhaps thinking fast is not an option for them; perhaps we cannot possibly begin to imagine how a brain different from our own works - but we don't really need to imagine, we just need to accept.  It is very possible to encounter someone with an acute version of that, perhaps someone with a migraine; or someone who has had devastating news and is so overwhelmed with emotion, they cannot focus their mind on an inane decision such as what type of coffee to order; or something equally trivial.

Then there are people undergoing all kinds of treatment - chemo is obviously one that jumps to mind, sometimes visible, sometimes not - and there are many others too....... treatments, and even the stress associated with them, that slow people down, make it hard to walk, to think, to pull a heavy door, to pack shopping away quickly; even to make a decision.

 Obviously I am thinking about Lyme Disease especially - but having my shoulder injury and the associated chronic pain has shown me even more of a world that quite honestly is NOT invisible. I think we have to move away from the idea of INVISIBLE ILLNESS.  Opening our eyes, both physically and metaphorically, to the point of observation doesn't just teach us to look a bit deeper; it brings a kinder society - people giving the benefit of the doubt; people choosing to help instead of hurry. Surely, in this world we find ourselves in just now, aiming to be kind may be the best thing to do?

Agreed. So many people are disagreeing about faith, many ignore the gifts of the Spirit, and some misunderstand or refuse grace. Whatever denomination you are it's not about you it's about Jesus and what He did, let's never forget that kind of love.:
From Pinterest

I personally am moving away from the idea of 'invisible illnesses' -  I don't think there is such a thing.  I think there are (consciously) 'hidden' or ignored illnesses (I'm using 'illness'; thinking about Lyme - but my thoughts are applicable to an illness, a condition, a syndrome, anything really - to PEOPLE; not everything is, or has to be labelled).  I think, at our worst, we hide away from the world anyway, almost instinctively - not necessarily through choice, but in the way anyone will 'hide' in bed with the 'flu - several days un-showered, with ratty hair and 'moulded to your body' PJs is not a look anyone really wants to share with the world*!

*However, if you answer your door in PJs in the middle of the afternoon, there is a 'look' - usually a quick flash that may in some cases be inquisitive, but most often says, undeniably: it's 3pm, you have PYJAMAS on. I have learned that throwing a blanket over your shoulders changes this entirely - my own little experiment. People apologise, they "hope they didn't wake you/ get you out of bed/ etc." - just a blanket draped over your shoulders. It's so simple, yet so telling. (Yes, I've still got my geek on...... nonverbal communication, it's always there!)

But ultimately, I'm writing this because I'm beginning to truly hate the word INVISIBLE ILLNESS. It's not invisible. It's often hidden away, but it is also always out there, somewhere.
If you truly keep their eyes open - and sometimes your heart - up the empathy! You will see people all around us who may need that little bit more help, a few minutes more patience - people for whom that loud and exasperated *sigh* really says "we can all see that you're slow; we can all see that you are holding everyone up; you're annoying people everywhere you go."
People may not mean to convey such hurtful messages in a sigh - they are perhaps running late, desperate for coffee, on their way to a meeting.  Or in some cases, with a glare and a sigh, they may be first class arses who should pop their own bubble a bit, look outside their comfort zone, and realise kindness never killed anyone! 

always. - Click image to find more Quotes Pinterest pins:

Saturday, February 25, 2017

'An empty desk'

 Just something I was thinking about lately...

~ Einstein ~
From Google Images

From Google Images

Wednesday, February 22, 2017

#TBT Happy Memories

A happy memory, something nice to write about. Something that brought genuine smiles to my face the other day. So I figured that definitely deserved a blog post. πŸ˜€

I have a lot going on again, health-wise - with my utterly f*kced -up shoulder; a worsening Lyme relapse; add a pinch of stress, a shake of trauma; mix together in the year from hell (not exaggerating) and simmer indefinitely at boiling point, and I feel that adequately describes my life right now - as briefly as possible. That's all for another day. 

I'm painting a picture of just how delighted I was to have something truly make me smile.  It's a stark contrast right now, and it was an important reminder that remembering the good stuff is truly important.

I do feel like I'm battling through each day, rarely emerging on top, and the longer that goes on, the more difficult it becomes to find positives.  Honestly, it's beyond frustrating - there is nothing I wouldn't do or try, right now, to make things better... and I have; I have tried everything you can imagine, and more. And worse than frustrating, is the soul-crushing feeling of admitting  (even to myself) this 'new thing'/ 'new person' / 'new whatever' - that initially held such optimistic promise and gave me a glimmer of hope, is not 'The Thing' I am looking for.  It's like treading water - kicking so hard all the time, but never actually getting anywhere.  Right now, the challenge is to keep kicking; to keep my chin above water long enough to  survive. And hopefully I can take control again soon and get back to seeing my wonderful doctors & physios in the US, who helped me make great progress before - I am sure I can work hard and make it happen again - and most importantly, get on with my life.

But, appreciating the small things just now;  I woke up a few days ago and my ex-gymnastics partner had posted a #tbt on social media that really made me smile....

Colette on base, me in the middle, Amy (always!) on top
Colette kicked it off by writing: #tbt to holding two humans up with my own two legs....

So, of course, i dug out out one of my own photos to post too.... and captioned it 'to when I could hold up two humans too... on my shoulders' - which probably won't be happening again. Definitely not any time soon. Although one day..... who knows?!  

Me on base, Colette in the middle & Amy on top.

It's a long time since I really really looked at those photos and took the time to think about what we did; how much I loved it. Comments on social media reminded me how funny I always found it when non-gymnasts learned what I did. It was just something I grew up with - it was normal,  in my world. I remember once, in training, the balance in the second photo came tumbling down and the full weight of a 10 year old landed on my head (think: approximately 1.5 times the weight of a checked bag for an international flight)... while I was in splits. There was the usual call to my parents - I'm ok, but please pick me up from A&E instead of the gym tonight - a soft neck collar from my physio for some damaged muscles/ tendons/bruised bones; and probably a couple of days off uni. None of that was a huge deal - you really couldn't learn new things without the odd fall.  But the thing I remember most about that was going into uni with a neck collar on ('normal' people react to those things way more than gymnasts - lesson 1); someone asked what happened, so I very briefly explained. The girl who asked stared back at me... "You can do the splits?!" she replied, sort of incredulously.  I remember staring back, feeling like I'd been dropped in an alternate universe. At the time, we were the only trio in Britain competing that base position with no hands (- my hands are not on the floor); all I could think was I can do the splits..... that's what you got from that?!... practically everyone I know can do the splits. .. But, of course I sort of smiled and nodded, and had umpteen similar conversations through that first year of university!

Growing up, friends knew me as a gymnast, it was so much a part of my identity. When I started uni, and conversations like that happened; I had to realise my little world was a little different sometimes. ( But doing the splits in a bar always ended with free drinks! πŸ‘πŸΈπŸ˜†)

 So I guess it was nice to slip into that world again, through those photos. It's so easy just to close my eyes and imagine I'm still there. 

 My old gym partner and I had a conversation about it, reflecting on that time and thinking about how in sync we were ALL the time - how we all took it for granted, but it really is quite incredible when you really think about it.... and there was always such a natural feeling to it - we didn't have to work hard at being in sync (we had to work damn hard at everything else!!); we were just in tune with each other. I think with all those years to reflect, it is a pretty amazing thing! (But really, being able to do the splits  STILL impresses people more! πŸ˜‚.... trying to maintain my core strength & leg strength is important... therefore exercise = stretching. I could do splits with a sling* on my arm! *Not the crazy, giant post-surgical one.... I could hardly move anything at that point - couldn't even put on socks! However, arm supported & I can (sort of*) still do the splits now! πŸ‘πŸ’ͺ*'sort of' - as in: if you're a gymnast, my hips are twisted, my back knee is twisted and I'm really not sitting up straight, or comfortably; if you're not a gymnast, I can totally still do the splits! πŸ˜‰ ) 

We trained together ALL the time, but we just loved it. We both talked about how much looking at the old photos really made us smile. They are absolutely fantastic memories to have - and to share.

 We worked together so many hours every week, completely trusting each other - really with our lives (the risk of serious injury is high!! See the photos?! ⬆ - and, like I said, they did come tumbling down occasionally! Everyone's  did!!), but in among all that, I don't have a single memory of fighting, or falling out - we just loved what we did.

Given my blog is generally medical, and this x-ray might be the coolest thing ever, this seems a good place for it! (From Pinterest)

Most of this blog documents my 'journey' 'out of the Lyme light'  -  (and in, out, in, out, slip downstairs, have surgeries, somersault in my car... turn it all about....)  that wasn't exactly my intention - obviously!  - my intention was to spread awareness of Lyme in the UK (again, uodates there require a whole load of other posts....); but it unintentionally became my personal blog as well as an awareness blog - about way more than Lyme Disease. It is very much about what's going on in my life right now... and I can't wait until I have something more exciting and interesting (in a GOOD way!) to write about. 

But for right now, in this moment, it's nice to have something else to think about and write about; and to remember what was genuinely one of the happiest moments in my life - I loved competing. We loved competing. I do feel lucky that I can look back on these photos and conjure up so many happy memories - they spark so many gymnastics-related memories, and they all make me smile. 

Not 25 years yet (!) But I'm sure we'll still feel the same in that far, far distant future :-)

And it DEFINITELY came into play, I guess...

Along with this - yes, gymnastics 100% taught me ALL of these things; it's also a good reminder that these are most definitely transferable skills.

And when my dad complains I am being stubborn (I get it from both sides, it really shouldn't surprise him), I tell him that's how I've SURVIVED!!

And honestly, now I really don't know if I'll ever be able to handstand again or not... I'm pretty sure I won't ever stop hoping & then hopefully trying - at some point, because being upside down always feels best! However, I definitely want one of these tops... because: once a gymnast, always a gymnast!

Sunday, February 5, 2017

Pain relief arsenal...

So far, I feel this year can be summed up by the fact that this photo is pretty much my current "what would you take to a desert island?" answer.  

Pain relief arsenal.
It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...

I had a few violent 'pain attacks' lately and - sticking with my personal resolution to be more honest - I really feel pain is winning right now. So, here are the weapons in my pain arsenal - most of them go everywhere I go right now.  Find your pain, pick your poison. I present....

My Pain Arsenal:

  1. Tablet organiser case (guess I'm missing the hot pink version!) with a mini 8-compartment tub in it for sorting daily pain meds (no Lyme meds or supplements - this is just the pain box :-/ ). Right now I have 40-50 tablets I take every day in that - types of painkillers; multiple muscle relaxants & anti-spasmodic meds; a couple of different anti-nauseas (I respond to severe pain with nausea..... sometimes I throw up. And that hurts like hell. So I have some serious anti-emetics in there); plus some 'extra-just-in-case' tablets for when Really Bad Things happen (I'll write a 'Really Bad Things' post... maybe a few... little snapshots of my whole 'honesty and pain' thing.... that will be something happy and cheerful to look forward to...)

    N.B. *
    I really should put emojis on my laptop!* Is it really bad I miss them when I type on here?! ( *facepalm*... *ha ha*... ;-) ...)

          From the photo: going anti-clockwise here...

  2. Radian B, my favourite version of deep heat/ icy-hot/ ralgex/ etc. because it also has the perfect amount of capsaicin in it: 0.01%. More than this will make you forget your pain entirely, because you feel like your body is covered in FIRE; 0.01% is just enough to beat all the other heat rubs out there. It puts heat into the muscles; also helps with pain by slightly scrambling the nerve signals sent to the brain. I really love the smell of muscle rubs.... they smell like my Dad used to smell when he came home from work when I was very young (when he'd see a physio after a game); they also smell like gymnastics - the scent of my childhood: muscle rubs for sports injuries!

  3. TENS unit: 'transcutaneous electrical nerve stimulation' (sounds like another torture device, right?!) Actually, at certain times, this thing really is like magic. There are some pains that it doesn't do great with - specific nerve pains can feel like they are just buzzing more; but for some otherwise-untouchable pain, the TENS unit works wonders. It sends little electrical impulses between the electrode pads that can be stuck on the skin, carefully positioned to target specific pain areas. It has different settings- buzzing, tapping, contracting, cycling through them (my 'surprise setting') - and can be set at different levels of intensity. Essentially it 'scrambles' the sensations sensory nerves send back to the brain, scrambling the pain signals by confusing' them with other sensations.

  4. Pink spiky physio ball of torture (not a dog toy). Rub painfully between your aching shoulder blade and a wall to improve circulation, blood flow, break up scar tissue, etc. For more 'fun', have someone else (who can actually reach your back better anyway) rub it to 'desensitise' high pain areas and super sensitive skin, and to break up tightness in muscles.  Generally - roll it anywhere it hurts to improve blood flow and use it to torture yourself in the hope i does some good!

  5. Pink spiky foam roller - this was deceptively packaged........ it is not in the slightest bit 'squishy' - I thought the bumps would be good for clicking the subluxating ribs back into my spine - and it is good for that. But bloody hell, a regular foam roller doesn't hurt! However, it's good for the crazy popping ribs, the assisted movement exercises & adds some unplanned desensitisation stuff just by lying on it!  Which, with increasing pain, I have to admit is a good thing - although sort of in the way broccoli is a good thing when you're 8 - you really don't like it, but 1. it's good for you, and 2. dessert's only an option if you eat it!

    Pain relief arsenal.
    It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...

  6. Prescription pain cream - a wonderful combo of topical local anaesthetic, muscle relaxant and anti-spasmodic medication.  Made better by mixing with Radian B (& missing from the photo is a genius find - a very soft-bristled, long-handled back brush that I can use to apply the creams and rub them in thoroughly - if the pain cream is properly rubbed in, it's supposed to penetrate up to 5mm into/ below the skin & be absorbed better.  It's pretty hard to do that, so if you're reading this and use a pain cream, a soft bristled brush may be your favourite new thing for a while!

  7.  ICE pack -  they are all resting on top of a giant ICE pack here, wrapped in the grey pillowcase. A perfect metaphor -  ICE is absolutely the foundation of it all.... still!  Sometimes ICE is absolutely still my favourite thing!  There was a time ICE brought; the only respite from the pain; and I do miss that damn ICE  machine, mainly because it's hard to ICE a shoulder - it's a funny, awkward shape and that shoulder pack hit all the right spots perfectly!  ICE  sometimes really is still the best pain relief, especially when my shoulder is irritated and inflamed and and numbing/ reducing swelling is the BEST thing that works - especially with frequently random irritation and swelling which can be pretty horrid if it presses on nerves (um, or more accurately just goes from its normal gentle press to a full blown, limb-numbing nerve squeeze).

  8. Hot water bottles (not pictured; but I have 3) - I'm probably holding one against my ribs in attempt to keep the muscles relaxed enough to breathe properly (because that's always good!)...... my right rib cage no longer expands properly, making breathing difficult at times. I think it should improve, but stretching right now causes further spasming; my attempts are pretty pathetic - I need the passive stretching from hands-on physiotherapy while my muscles can 'relax'.

    *I think the tight rib muscles got a lot worse after my car accident.... which I'm not sure I've mentioned on here....?  I guess that's another one to add to my list of 'Update how UNBELIEVABLE my last 18 months have been'.
    And I mean unbelievable in the sense that I am quite sure if I just sat down and rattled off everything that has happened to me in the past 18 months (/ 26 months / 6 and a half years / twelve years - really, take your pick! ) to someone who does not know me/ has never met me before, they 100% would NOT believe me.

Pinterest even had a perfect graph to represent exactly how every day feels
- and it matches too!
Seriously though, it really does get beyond frustrating.
So many things I wish I could do that just don't happen just now.