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 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 but I didn’t know that they 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.

And when I think with my head I know that for the most part, they are right. But 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 clear, 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.

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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 Crucial Crutch!

img_2713As many of you know, I travel a lot (with work) and spend most of it in bed writing. It’s a blessed and interesting life which I am deeply thankful for despite the pain. I learn soooo much walking this strange middle ground behind doors with fascinating insights into unusual things. The back doors of planes when there is no ramp to roll the wheelchair up, hotel rooms when everyone else is off at their meetings, strangers who help or stare at me, or whatever.

This morning is day 6 of this trip and I realised by day 4 that most of the guests have eaten breakfast before I arrive in the restaurant at 9am, so I have it pretty much to myself. It is also only a few doors down from my hotel room and I meet almost no one on the way there or back.

I never go anywhere without my crutch but at home where there are wide doorways, no unnecessary furniture, almost no other people and I know my way around perfectly, I don’t need my crutch. So on days like today, it is tempting to go to breakfast without it. I knew there would be no one to bump me, plenty of room, and such a short walk.  It feels soooo good to spend that short walk, all of 2 minutes, looking like a “normal” person. It feels like a great gift! So I periodically I give in to this temptation to leave the crutch behind just this once.

Zebra Crutch!But on the whole, human beings want the best for each other and wish strangers well. So as I arrived at breakfast the waiters who I had spent the last 4 days getting to know, chatting to them like the real people they are, and trying to be the best customer I can be, were all THRILLED that my leg was suddenly better! They had never asked what was wrong with me, but we all make assumptions and seeing me with a crutch meant for them that I must have a sore leg right? So today when I hobbled in without it, one by one they all came over to say how thrilled they were that it is better!

Um…. no. In a few days time I will go home and likely never see them again, so it just wasn’t worth it to explain the whole thing, especially so many times. So I just thanked them for their kindness and didn’t pop their bubble that I am healed. YAY! I shared their happiness for me. But I was reminded, yet again, why I need to be consistent and never, ever, ever go without the crutch.

In a similar story a few months ago, my husband took my crutch out the car because he was collecting work people from the airport. He forgot to put it back in and the next day I drove to pick him up from the office so that we could join the overseas guests at a restaurant for dinner. We only realised the mistake when we arrived and there was no crutch on the back seat. We parked only a few spaces from the restaurant door and as he was with me I just latched onto his arm tightly.

We had the same response from all the colleagues as I did a few days ago here at the hotel; all were thrilled that I was suddenly healed. We then spent the next 10 minutes explaining the situation.

Screen Shot 2017-05-25 at 1.22.00 PMSo you see, it isn’t about whether they are right or wrong or the false hope, or the explanations. People are so used to my crutches and mobility issues and my wheelchair now, that they just see it all as part of me. Some have leaned in and been great, others have run a mile, but wherever they are in the whole scheme of things, we have found our new normal with each of them. And when I arrive at breakfast, or dinner, or at the airport or the office, or anywhere else, they talk to me the same way they talk to “normal” people. They ask about my week or my trip and share their own news. My mobility aids are no more a part of the discussion than a coat or a scarf or a handbag would be. But when I go without it people get excited and we land up talking about my health and my crutches and whether or not I am cured and it opens the door to a whole conversation that I am sick of talking about.

It’s not their fault and they aren’t rude. But the reality is, I do wish that I could leave it at home, or in the room or in the car sometimes, but I can’t…

Walks without crutches are short as anyway, but they are now only for home, family and a very small group of friends that I see a lot of … sadly 😦

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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: 

@JPeaSmith

Meet Chrisjan, Guest post…

Today we have a guest post from Helene, who has so generously sent me her own story with EDS, and I decided that as she clearly written it from her heart and share’d so honestly, I will leave it in her own words and let her speak. For me, it is a huge reminder that life happens to all of us and that chronic illness gives no one a “get-out-of-jail-free” card from the rest of life’s challenges. In other words, you don’t get a chronic illness instead of other things, you get it as well.
Here she is will her gorgeous son Chrisjan:

Screen Shot 2017-05-30 at 5.10.49 PM“Good Afternoon, I am Helene and my son is Chrisjan and he is 13 and has been diagnosed with Hypermobile Ehlers-Danlos Syndrome or hEDS.

I have two children, my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, my daughter at 33 weeks and son at 36 weeks, due to an incompetent cervix and cervical cancer. In 2009 their father passed away from White Matter Disease (early onset Alzheimers).
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We moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of ADHD and we had him assessed and it was confirmed. He is on medication for ADHD and depression as well as Sleep Disorder. In 2015 just after I remarried I had to stop working as Chrisjan struggled a lot with eating and muscle wastage. Due to not having medical aid, we turned to the government hospitals for help where they did all the tests you could think of, from MRI to EEG, ECG to numerous blood tests, and we found out November 2016 he has EDS.
He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralysed on his left side. He lost his work due to it, at least he can walk now but He has a heart condition which is still under investigation and has been diagnosed with Functional Neurological Disorder. I have been looking for work but it has not been easy.
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Chrisjan also has a small heart (equivalent to a 7-year-old) and struggles some days in simple tasks. He has twice hurt himself where he needed stitches, once in his index finger (for this he had to undergo anaesthetic) and once he cut his left palm.
Amidst all that, my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He only weighs 30 kg. He walks around with a bit of difficulty, his left knee is aching a lot as they said the cushion is worn through.  His right ring finger is in a bent position, and he cannot straighten it which causes problems when he writes. His right shoulder blade in severely malformed and it is shorter than the left. I am at the point where I do not allow him to walk without a T-shirt as I cannot bear looking at him and counting all his protruding bones.
He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future.
And that is our story on a short end. “
Thanks Helene so much for your story!

img_3636If you would like me to share your story with any chronic illness please email me on: JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

SmartCRUTCH notes!

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Last night I did a Facebook Live stream all about my crutches. It didn’t go as well as planned as I had a bunch of photos that I wanted to use in my descriptions. It turns out you can’t put photos in the comments of a video (live or otherwise) which was not only so annoying but it meant that I got tongue tied and stressed 😦

Anyway, so I said I’d add the photos here for you all to see! So if you missed the video it is HERE. And if you watched it but need the pics, here they are:

 

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Me with my gutter crutches! (note that my left wrist is bandaged! Could never do that with the other two kinds of crutches!)

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How much better are the SmartCRUTCHES!!!

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Some direct comparisons (note the velcro and the bolts that kept coming undone!):

Even the base is better and more stable (the SmartCRUTCH is on the left):

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Seriously, look at that wear and tear (there is none after 2 years, being chucked around and smashed through customs and baggage handlers through HongKong, Los Angeles, Cape Town x6, Perth (Australia) x 5, Dubai x6, Rome, Tuscany, London x2, Johannesburg too many to count, and that doesn’t include everyday use, being dropped and stomped on hundreds of times, chucked in the back of the car even more times… and so the list goes on!

And they come in 3 sizes, here are the middle and baby sizes:

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And finally, the gorgeous ZEBRA crutch for EDS!! WOOHOO!

Check out SmartCrutch and The Ehlers-Danlos Society for details and don’t forget to tell them I sent you!! 🙂

Zebra Crutch!

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: 

@JPeaSmith

My Smart Crutch Crush!

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As many of you will know, I ditched confentional crutches for good reason, use a SmartCrutch wherever I go, and it has been life changing for me! I am not paid by the inventors or producers or any of the companies who sell these crutches, to use, talk about, or advertise them in any way, shape or form. I talk about them a lot because I believe in them, and they are in most of my photos because they go everywhere with me. They have become somewhat of an extra limb for me. They protect me, and they give me the ability to walk a little most days.

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I am also a little biased, and proud, that they are locally invented and produced, right here in South Africa!

I decorate them, I travel with them, I walk with elephants with them, and they have become a part of me!

So it is my honour and great pleasure to announce that I am now partnering with them to help get word out there, to show them off, to recommend them, and to help anyone with questions on how to get them, how to use them, how to decorate them and how to make the most of them.

The best way to do that is to ask me directly, so please join me this Thursday (May 25th) at 8pm Johannesburg time (7pm London time, etc…

I will be unveiling the new Zebra SmartCrutch in honour of May being EDS Awareness Month, I will be showing it off, and answering all your questions! SmartCrutch USA  will be joining us for the Facebook Live Stream, as will the inventors and producers of these amazing products!

So put this in your diaries, or even better, respond to THIS event on Facebook, and follow my Page so that you will find us easily. We look forward to seeing you there!

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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: 

@JPeaSmith