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.