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'!

2 comments:

  1. Hello - how did you get on with your shoulder surgery? I am due to fly out to the states for mine from the UK- next month and feeling rather nervous! j

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    1. Hi, I'm sorry I didn't see this earlier - I think I replied to an email from you before I saw it though. Please feel free to ask anything - if I can be of any help, I will try! I've just been a bit floored the past few weeks.
      Briefly - honestly, the surgery was the easy part. Yes, it hurts and the first couple of weeks are really tough, but for me, and others who have been in touch, the change in pain is instant; the surgical pain becomes the dominant pain quickly. For me, I had a lot of other issues with surrounding muscles & nerve damage, but the actual scapular muscle reattachment surgery was successful & the surgeon & clinic were first class. I know others who had simpler injuries made good recoveries within the time the clinic predicts. And they have 5 years more experience with it now than when I had it. Are you going to Dr K in KY?
      The one piece of advice immediately following surgery that I was given & would pass on as number 1 priority is to have a recliner to use. I borrowed an electronic one from a friend's friend. I practically lived in it for 2 weeks. If you're in KY, the hotel next to the clinic will put one in your room for after surgery if you let them know in advance. (Other places, I guess it's worth asking.) If you can't get one, definitely stock up on pillows to sort of build a 'slope'& a footstool/ similar. Also, when they tell you to walk when the pain is bad, it really does help too - even in circles round a room/ pacing up & down a hotel room! Also, baby wipes & hand sanitizer & dry shampoo are really helpful, & the ice pump machine will feel like your best friend - so will the sling. I wore loose sweatpant-type trousers & vest-tops I could step in & out of with cardigans - over the head is hard. Having someone to help with pretty much everything initially makes a huge difference.
      I wrote more in Feb/ March 2012 & then in Feb 2014.
      I hope some of that is helpful, good luck with your surgery & let me know if you have any other questions I might be able to help with. Gail

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