Cross Roads!

img_9244-1It’s been too long. I had no idea how long in fact, that I’ve been away from this beloved blog, this voice that helps me get through so much of my life, and I apologize for my absence. Thanks to all of you who have stayed and not unfollowed in the meantime. It has been about 6 weeks, and I feel like I have been on a massive journey that I am still on in many ways. But I see some light at the end of the tunnel (and pray it isn’t a train!). I don’t want this to be too long and boring, so I’ll keep it short then hopefully go into more detail as and when needed, over the next few months.

  1. I’ve been away. It is winter here in the southern hemisphere, so we are all hunched down in front of fire places and heaters rather than galavanting around the countryside, but July is also one of three birthday chunks in our family, and a big meeting time for my other half. So I have only spent 6 nights in my own bed since the middle of June but I have been far and wide, caught up with special people, and celebrated birthdays in London, Oxfordshire, Perth (Australia) and Gosford (also in Australia). So it’s been hotels, couches, and 7 different beds… no wonder I am behind on so many things!
  2. I’ve pushed myself a bit hard and so my pain levels have been a little worse than usual, although winter is usually worse than summer anyway. So I have been very sore and wallowing a little …
  3. I’ve been reevaluating my writing and my online presence and while I’m not quite there yet, I am making some progress with finding a space that is less taxing but more permanent. I am reminded how much I love writing and blogging and I must be careful not to lose this …
  4. I’ve seen a new specialist and have a new diagnosis on top of the old one. Fibromyalgia seems to be part of the problem, and while I’m not 100% convinced yet, I suspect that I am in denial and don’t want another diagnosis.
  5. I turned fifty! It hasn’t really changed anything but I have felt loved and I think for anyone, the half way mark is a time of reflection and re-evaluation so here I am!
  6. I think I’m stressed because I am behind on almost everything, including newsletters and writing, so hopefully August is going to be a time of refreshing and catch up!
  7. I have given in to pressure and am about to start my own Youtube channel, which will mean back into the Facebook Live events as well …

Thanks as always and I look forward to unpacking those a little over the next few weeks 🙂

The Miracle Walk or Free Massage?

I hate airports. I always have. Mainly because pain and airports don’t mix. A wheelchair has made that space much safer on so many levels:

  • I no longer have to carry my own bags and risk dislocation,
  • I no longer trip trying to keep up with my husband,
  • my hip doesn’t kill me from standing in queues.

But now there are new decisions to make because wheelchairs and the public are still not great things to mix. People stare, and they judge. But there are also legal issues. For example, if we use airport help then I’m not allowed out my chair (in case I hurt myself and sue them).

We also have to decide when it comes to security, whether to stand up and go through the screen or stay in my chair and have a physical body search. My husband is sure that the former is easier on everyone, but it’s not that simple.

  1. If I stand up the judging multiplies exponentially and the sniggers about me using a wheelchair to cheat and jump queues start!
  2. Someone still needs to take the chair through and check it for explosives so it often takes just as long.
  3. Because of no.2 I can come out the other end with nowhere to sit and said hips starts complaining.
  4. Worst of all, people jump to conclusions and assume that because I can stand I can pick up my own bags, and lift my arms, and they are not gentle with me.
  5. Often people are body searched anyway, and they aren’t as gentle on the general public as they are on the disabled.
  6. Sitting in my chair and zooming around over bumps, my joints settle and then getting up again is really sore and really hard. So hopping in & out of it is actually not that easy.
  7. I have been hurt a few times by getting up for people. Believe it or not, “helping” me by pulling on my arm does more harm than good, also pulling my chair away when I am not completely out is a disaster!
  8. And so the list goes on!

If you have the option, do you (or would you) pick the Miracle Walk or the Free Massage? (Those body checks can be pretty invasive).

Where Jennifer hangs out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith

“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman

Unpredictability!

This morning my back went. Anyone with Eeds know what it means when something goes. It’s not so much about falling or banging into things, tho those are major issues too. It is about the smallest things sometimes, and the tendons twist and twang and tear and it is gut wrenchingly painful. I have passed out from the pain in the past.
Today was supposed to be my art day. This is a crucial part in my normalcy and something that I am forced to do less and less of. But this morning my back went. It doesn’t help that a misplaced hug a fortnight ago did my left arm in either, so I can’t hang on so well, or even roll over without help.

So in the blink of an eye I have gone from relative independence and a day out planned, driving myself, to needing assistance for everything from rolling over to sitting on the loo.

Thankfully my husband is not traveling with work and he was able to drop everything and come home. But it’s a huge scare and reminder of the unpredictability of our lives.

I am writing this one finger at a time, on my phone, feeling a mixture of thankfulness for this technology and frustration that it is so slow…

At least a have a bunch of books that I need to catch up on!! 

How to Be Nice?

After all this time, I still don’t know how to be firm enough and nice enough at the same time, when people give me advice about my condition that is factually incorrect. Someone once said to me that I should just nod and listen but then just let it brush off me.

But they don’t get that if I did that, there are a number of problems. The first is that it happens to me ALL.THE.TIME. I spend very limited hours a week with people and so to encounter one of these almost every single time is not only tedious and boring but it is a terrible waste of my precious energy.

Secondly, and this is even more important is that people are kind and loving and they want to help me. So they follow up. They want to know if it worked.. what I thought.. and often they simply want affirmation that their idea is so wonderful. Their motives are sooo good, that they invest in the outcome.

So what do I do then … lie? Nope! Pretend? Nope? But when I tell them the truth they don’t listen. When I tell them that I’ve already tried it or the theory behind it does not apply to what I have or that I am already trialing other things and can’t interfere with the process, they brush me aside.

If I had a broken leg, drinking a cocktail made from broken legs will NOT fix it.

What a stupid analogy they say. But my collagen (each and every collagen cell in my body) is broken (has a piece missing) so drinking collagen will not change that! And I don’t have the heart to tell them that their suggestion is no less silly than that.

My body is not fighting itself, it isn’t riddled with disease, it isn’t toxic or imbalanced or too acidic or alkaline. It’s just missing a little bit. Lots of little bits. Lots and lots and lots of very little bits.

And neither teas nor powders nor pills nor potions can replace them. But how do I tell people that?

Where Jennifer hangs out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith
“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman

Diagnosis Envy

img_8779-1This is very similar to Illness Envy and I think that it may actually be behind some people’s issues who suffer from Illness Envy. But it is important to recognize the difference because unlike Illness Envy which has no upside, Diagnosis Envy is hugely valid…

Envy is a really tricky word. We hear it all the time in the negative context and in most instances, I think that it is negative. But it is also a very real part of life and also somewhat justified: if a child hasn’t eaten in three days then they would be crazy not to have some envy towards the kid on the bench eating a massive hot dog. In the same way, I own that I envy people who are free of constant pain.

The problem only arises when we don’t recognize it and the outcome is that we hurt others, “steal” their empathy or their moment of comfort and try to make it our own. When we trash others or belittle them in the hope that we will be “seen” or “heard” instead, and that our own pain will be validated.

Last week I was in the doctor’s office, moving slowly with my crutch. I leaned up against the counter with the receptionist behind. She couldn’t see my crutch (though often she can see it) but I think that she had forgotten what I have and that I am in a lot of pain. A man popped his head in the door briefly and asked her a question then left again. The receptionist conspiratorily whispered to me: you won’t believe how much pain that man is in every day! He has this illness that means he is always in pain. Honestly, if that was me I don’t know what I would do… blah blah blah blah blah and on she went…

Um…. I didn’t say anything. It was insensitive and dismissive of my situation. But I didn’t envy her sympathy, I only felt sorry for the man. But I did feel very uncomfortable and dismissed. But it was easy for me because I have a diagnosis, I have my pain validated one way or another almost every day without having to say anything to anyone, and so it is easy to be without envy. But I know what it is like to

I didn’t say anything. Her words, her attitude, and her little gossip were insensitive and dismissive of my situation. But I didn’t envy him her sympathy, I only felt sorry for the man. I also felt a bit uncomfortable and dismissed. But it was easy for me because I have a diagnosis, I have my pain validated one way or another almost every day without having to say anything to anyone, and so it is easy to be without envy. But I know what it is like to not have a diagnosis and be envious of people like me on this side of the fence who do have one. I spent 3o years on that side and it is frustrating and hurtful emotionally as well as physically.

Diagnosis Envy is extremely valid in and of itself, we just need to make sure that we are sensitive with how we express it to others and the way we treat those on the other side of the fence.

Where I hang out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon
@JPeaSmith
“We are all broken, that’s how the lights gets in”  –  Ernest Hemingway

Illness Envy.

img_8774-1It has taken me six months to feel brave enough to write this post! Seriously… every time I go to write it I think that people will tell me that I am imagining things, that no one does this, and so I pack it away and close my mouth. Then it happens again and I pull out this draft and start writing…. and then the same doubts push me to pack it away again.

But the simple truth is that time and again, I see it happening here, there and everywhere. it happens to me personally, it happens to people I know, and I see it on posts all over social media… It doesn’t have this name, and I am not sure that people know how to talk about it or what to do about it. So they skate over it and then leave it. No one wants to stand up and say: you know what, that comment wasn’t ok. That comment is simply illness envy!

So what is illness envy I hear you ask? It is that time when someone in the room asks me how I am going, or if I am having a good or a bad week. And someone else in the room pipes up (before I can answer) and says that it is all in my head, or I must just keep my chin up, or some other flippant comment, followed by them turning the attention to themselves and their own journey with pain. It comes across, whether they like it or not, as though they are envious of me and my illness. They appear to have a need to trump mine, or to squash mine, or to make out that they are worse.

And I am sorry people, but I don’t know how to respond or stop it, but it simply isn’t OK.

I know what it is like to be in pain for a seriously long time and not have anyone notice, I get that! And I get that when someone else gets attention for it then it is easy to feel invisible. But do they not know that what they are doing does not make other people have any sympathy or empathy for you when you do it. The attention showed to me in that moment (which might be the only “attention” that I have had in ages) is not going to go to you just because you steal it.

Hence begins a series on “envy” …

(Have you experienced this? On any side of the story? As the person who got trumped or as the person trying to give empathy to someone but a third party trumped your enquiry? Or are you the person who has this envy and can explain what is happening?) … I would love to hear from any of you!

Where I hang out: Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon
@JPeaSmith
“We are all broken, that’s how the lights gets in”  –  Ernest Hemingway

 

Losing Friendships Part Seven:

Part Seven is sadly another reason why some partnerships need to end, but like last time,  some are up to us to end them. One thing that I have personally felt when I have experienced so much loss around me, on so many levels, is the desire to hang on to what I have. To be so thankful for the friendships that have stayed, that I don’t see the forest for the trees and allow some friendships to become toxic and some people to get away with stuff that I would never have let them do if I had the energy to do anything about it.

I’m going to talk next time (maybe the last in this series of losing friendships?) more on the difference between walking away from a friendship and keeping it and setting boundaries. So please don’t get me wrong and think that I am condoning sweeping changes in my life by getting rid of anyone who looks sideways wrongly. I am not doing that at all, I am just trying to point at that some friends may not actually walk away but I need to. Or at least push back or set some boundaries.

I have noticed that a small group of people who have stayed (and yes I am thankful to them for that) are causing me more harm than good because all the want to do is give me advice, and the advice that they are giving me is extremely unhelpful and it is sapping my energy having this conversations over and over. They never listen to a word that I say and when I try to explain what I need they give me a barrage of advice that if they stopped and thought about it for a millisecond, they would realize that it is totally ridiculous. This is an example of a medical interaction rather than a friend but it is a concise example:

My Lisfranc injury in my left foot meant that I could not weight bear on it at all for 10 weeks. That meant crutches, but after only a few days both my hands collapsed and I couldn’t even pick up a pen never mind bear the weight of my whole body to get around. The crutches had to go and I was in the ER having X-rays of my hands. The physio came and checked them out as we needed a plan that no longer used my hands. She was quick with a brilliant idea and returned with a walking frame.

I don’t know if you have ever used one or seen anyone use one, but they work by using ….yup, your hands to bear your weight between each step. I looked at her blankly waiting for her to realize her mistake but it never occurred to her. I had to then spend over five minutes explaining to her why this was no better than crutches. She was not amused! The look on her face when left told me that she thought I was just being difficult and she did not even realize her mistake.

Friends and family can be no different. They love us, care for us, want what is best for us and they want to help us. But some of them think up stuff to help us that is not well thought out. A solution might be great for someone with a different problem, but when they don’t think through the whole discussion beforehand, through my problem, then I am left having to think it through, explain, and have a long discussion over why it wouldn’t work.

Screen Shot 2016-02-15 at 1.58.44 PMI am not saying that advice is not welcome, it is, but please put it through it’s paces first. You might think that you are only person to off me advice on any given day, but I can assure that you are not. I need my friends to meet me at my point of need. I need them to see me and work with it and help me, not come up with plans that are totally inappropriate for me. For this reason alone I have had to pull away from a small handful of people. It makes me feel very sad, but it is vital to my well being…