Sunday, January 12, 2014

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

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