Frightened of Losing Your Diagnosis?

img_8897-1Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where was I either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.

Then came diagnosis. As I look back on the two years since then, the journey has been just as crazy. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups, and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.

But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?

There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.

But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the Chronic Illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe that I didn’t even know about, that I didn’t know that even existed, never mind how to find them!

When Fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “Rare Diseases” community, popped the questions on MY Facebook page instead of having to search for new people, and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.

There are over 200 Connective Tissue Disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we are very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers Danlos Syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.

When I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too near, and they haunt me in my weakest moments. Pleeeease don’t send me back out there to Leper Land! Pleeeease let me stay here in the safety of my tribe! I am a zebra, I always have been and I always will be.

But when I think with my head I know that for the most part, they are right. And no matter and change in diagnosis, I will always belong to the tribe.

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Where you can find and follow Jennifer:

YouTube |Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith
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Monday!

img_8728No one ever sees me on a Monday. It’s really easy not to notice that you never see or speak to a certain person on any given regular day. No one sees me on a Thursday either. I’m not sure this is unusual.

Work people often never see each other on Sundays and church friends often never see each other mid week. It’s part of the ebb and flow of lives and routines … but most people see someone, most days of their lives.

Unless you’re on rest and Mondays and Thursdays at a minimum you spend in bed. Most people I know forget this. They forget that I write, blog, YouTube, from bed, that my editing and uploading is ALL done from bed. That even when I’m bad and sneak a day up, I’m home and in bed again by 4 or 5 pm. I eat dinner almost every night in bed.

So as humans, we forget, and we slot people into our own filters and templates…. and we scold people like me for making out we are sick when in fact we are SOOOO busy! Yes I’m busy! I’m also constantly exhausted, often desperately lonely, and all those things that I do, they require the effort of an army, the patience of a saint, and a purposeful summoning of all my resources!

So why do I do it? What’s the alternative? Do nothing! Do what I did yesterday from 2pm till midnight and do nothing but curl up in bed and watch mindless rubbish on Netflix and wallow?

There is no middle ground! There is no such thing as a “normal” day. I went out for a few hours on Saturday and again on Sunday. I loved on other people and connected with the world.

And I was bullied, and ignored, and pitied … not by everyone, but by some people, the kind of people who are self absorbed and do that to everyone. But I’m a target and usually one that can’t get away… and I lack the resources to fend them like you can.

I’m trying my butt off to make something of my life, to encourage, to make a difference, to be positive … and more often than not it confuses people!

I’m sore, always, and right now I have a huge mouth ulcer which means it even hurts to talk. I feel behind and overwhelmed by everything I want or need to do, and I HATE achieving nothing! I hate that if I walk for an hour on the walking machine my legs will hurt less in the night tonight but the energy needed will likely cost me a day of healing for my mouth. I hate that I can’t do both, that there aren’t enough spoons to go around and that I can’t boost my soul, my energy, my mood or my body by going for a real walk or a run or something other people can do.

I hate that if I can’t muster the energy to write, or edit, or achieve something else today, then I’ll feel even worse and even more behind! But if I do then the world will assume I’m “up and busy”!

But because I’m so low and my immune system is on its reserves, I have to be even more careful than usual… and anything I do with my day today could be costly!

So just a wee reminder: every day I climb a mountain. Most days it’s worth it, far too many it isn’t, and it costs me more than I have to give. Every day is painful… extremely painful physically and often emotionally! So to the lady yesterday who responded to someone else who was questioning me by interrupting with “you’re in pain, you can just say it you know, you don’t have to be brave!” THANK YOU!! And to the people who bullied me, thanks a lot! And to the people who judged me for being so busy and not getting enough rest …. well, what did our grandmothers say about “if you can’t say anything nice ….?” So I’ll leave it at that…

It’s Monday. I haven’t left bed since 2pm Sunday and I probably won’t get out until Wednesday at this rate… But I sure hope to be productive one way or another!!! Even if that looks “busy” to the world! See you on YouTube!

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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer:

YouTube |Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith

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