Lockdown Guilt and Imposter Syndrome

As previously stated in my last blog: at the beginning of June I had a bit of a wobble. When I state a bit, I lied... I actually had quite a big one. Unusual for me. I haven’t felt that low in quite a few years and it was particularly disconcerting not to feel like I was going to pull out of it anytime soon. Perspective is everything and despite the fact that really, my situation isn’t really that bad; the wobble was very much needed. Quite rightly so, nothing of what I’m living had I signed up to: I’m living in another country with no support (I have the odd friend, but my existence here isn’t particularly the most social in the beginning, let alone after lockdown started! My own choice as I’m quite the introvert but also, my good friends are actually stuck in other countries waiting to return to Egypt!)  My husband is stuck in the back end of the Middle East with no way of returning, my parents confined to their house back in the UK and me stuck in between. For a few weeks even the animals were beginning to test my patience. I’ve taken on a lot with Cervantes, my street cat project. (I’ll write about his story another time.. let’s just say it’s not been particularly easy and he’s very time consuming.)

A few people at the time had suggested that I get one of the repatriation flights back, but they seem to miss the point that El Gouna is my home. This isn’t a holiday, this has been my home and my life for over four years - I cannot just jump ship back to the UK without consequences. My life here, my cats and my dog would still exist. It’s amazing how easily people just assume that I am still just on a giant holiday here. I guess perhaps you don’t really “get” it until you visit and realise that this is life. My life. 

I got through the wobble, obviously. I still credit the kayak as one of the things that grounded me. However, now I’m almost experiencing the opposite - Lockdown Guilt, with a pinch of enjoyment? I’m still stuck. Dan is still stuck until god know’s when, each month we promise ourselves and hope that the outcome will change and yet it seems to change for the worse at the moment. We were meant to have spent June together. Instead we just sit here and every day count the hours, chat about day to day annoyances with not much to report back on. I miss him something chronic, but I’m a lot more at ease with it now. Don’t get me wrong.. I hate every damn moment of it, but I can’t change it, all I can do it sit and support and try and keep positive. He has his own issues - mostly revolving stupidity of others, and major fallout thanks to being in a ridiculously poor country rifled in Corona, but that’s another story and not mine to tell. (I’d love to though, his anecdotes keep me in stitches for hours). 

I’ve started to revel in being here, doing my own thing and from that I’ve started to feel guilty. I don’t know if it’s the Endorphins or having a purpose, but my feelings have bucked up a lot. I’ve got deeply into exercise the past few weeks. The Twitter posse, mostly the running community have been a bit of a lifeline on top of the kayaking. Mel, Myrna, Paul, Chris, Darren et al... you’ve all been a major help to me. Your positivity, guidance (and jokes!)  have really kept me focused into challenging myself which is normally what I shy away from. I’ve somehow managed to do a full 180 degree turn, and using that misery against something positive. Now I just need to keep it up. I also have the added bonus that my brother, Neil is now a running addict. (Words I thought that I would NEVER write). He’s lost a tonne of weight, got fit and we have a promise of a half marathon together in 2021. Neil and I are particularly close and I’m beyond excited to be able to share this with him, I’m quite simply over the moon actually. I then in turn feel guilty for actually feeling positive in such a shoddy time - I know it’s all situational and people are suffering and then there’s me trotting along just happy to be doing the bits that I’m doing. The introspective, anxious mind will never just simply let me enjoy a moment, will it?

I joined something called Run Around the World - It’s a split team effort to try and “virtually” Run around the world over the whole of July. I chose Team North, (choices were the obvious East, West, South) the only time that I’ll ever be a Northerner but pretty much all of my friends were in this group already so it made sense. I’ve been running on a treadmill pretty much ever since. I also shall complete the Race to the Stones Marathon today. 42km in 6 days...not bad for a wannabe runner. 

I call myself a wannabe runner, as I definitely have a touch of Imposter Syndrome, I don’t “feel” like a runner. I’m not entirely sure what I’m meant to feel like to actually BE a runner. I feel like someone dabbling in it... but I guess at some point that will change and I’ll feel like I’m actually doing it as a choice and not as not as a force to push myself ( but isn’t that what running is about?) I feel a little daunted by the twitter running community, everyone seems too have amazing race photos, cracking heart and breathing rates and personal bests that I could only ever dream of, but I guess that comes with time. They’ve never been anything but kind and inclusive despite the fact I’m so ridiculously new to all of this. I just have moments of blind panic that I’m not really anything vs these running giants and I’m wasting people’s time. 

I’m running in constant heat either outside (rarely now it’s Summer) or inside at the gym (the air con is only on 25c!) so I’m hoping that this will bring me in good stead as and when the temperatures drop and I can pick up my pace a bit. I guess also, after all the years of being sick and constant illness I’ve never really thought I’d fall into the category of being an athelete of sorts. I don’t feel good enough to be that, despite the fact it’s obvious that somehow I’m finally able to push myself to run 10km, with the aim of much, much more. I always feel like I’m in the recovery stage, not out the other side - always expecting the next fall. I know you could argue that attitude can set me back, but after over 20 years of suffering you kind of just expect it. A psychologist somewhere could probably make wonders out of my mind set, but instead, for now, my musings are put down on my blog instead.

Maybe when I can finally enter proper races, in person and join Park Run back in the UK I might feel a little differently. It also probably doesn’t help that I’ve pretty much run out of running kit. I’m down to two pairs of shorts and one running top. Even my sports bras are beginning to give up the ghost. So if you see any selfies/ photos of me wearing a pink running top, I promise it gets washed every single day! I’m hopefully due a family visit in August, of which I’ve already ordered a tonne of new kit to their house to bring with them.

Anyway,  it’s now 5am and the sun is coming up. It was one of those mornings where sleep was lost on me. Time to get out, walk the dog and then go kill the rest of that marathon. Come on Summer, I’m ready for you so that we can start back to the new normal again. Chop chop.

I would tell you a joke about a needle in a haystack, but I don’t think you’d see the point!

I’ve ended up in the same conversation a few times over as of late - stories about being adverse to needles. In-fact, I have a massive phobia of needles that has landed me in some hot water over the years. I thought I’d share them down onto my blog, so that you can all have a great laugh at my expense.

 Now, my background covers a lot of medical experiences and training thanks to a varied work life. I’ve seen so many animal accidents, sicknesses, blood and gore you’d think I’d be used to it by now; but no, I’m really not. It all started back when I was young. My father will always deny this; in fact, he calls me silly for it -  but he started it. He used to chase me, put his fingers at the back of my knees and middle of arms and shout “injection time”. I used to hate it, and even now, I absolutely hate being touched behind my knees or my arms. It makes me feel quite physically sick.

As written about previously, I had major health issues throughout my teenage years. The amount of needles, blood samples, canula fittings I endured must have gone well into the hundreds. All you need is a few bad experiences and BOOM! A phobia is born. Fear is completely stupid, because it’s always completely irrational. But that is exactly what it is. If it wasn’t, we’d all be fearless which in turn would lead to a whole different problem. My fellow animal volunteers find it absolutely hilarious (and perplexing) that I can help with an animal that is falling apart because of a road accident, with blood and guts everywhere... and yet I cannot bring myself to give a small subcutaneous injection under the fur. 

One of the first instances that I can remember is being treated at Great Ormond Street Hospital. The nurses took me to a room, and sat me on a chair to take blood. I always remember my mother specifically telling them that I’d need to lay down as I don’t fair very well...  The next thing I know I woke up on the floor. Mum says to this day that I’d gone the colour of the floor.. a very pale medical green!

I used to be on the DEPPO injection - which is basically the ladies pill in needle form. Once every three months I’d have to have an injection into my butt.. and every three months I’d have the same argument with the nurse about laying down, every time I won. Once time my ex-husband came with me and the nurse was insistent that I just needed to bend over and relax... so I did to prove my point. Once again, I woke up with both the nurse and my ex trying to lift me up onto the table. I was as still and as solid as a rock. Thankfully, she made a note then and there never to give me any sort of needle without laying down ever again. Point proven!

Now one of the more frightening times was a few years ago here in Egypt. 2017 was not a good year for me - I was gravely ill for months - I had an infection that had spread inside my body and really did quite a bit of permanent damage. One of the side effects of the medication (not that I knew it at the time!) was that it gave me tachycardia. On more than a few occasions I’d felt like I was having a heart attack. My heart rate would zoom up to 200bpm without me even doing anything. I had to pop up to Cairo for a tonne of tests as the Doctor in Gouna had told me I had slight heart failure. At 32, with no pre-existing issues. 😳 Anywho, I digress...

One of the main tests needed was a dye based CT scan. They inject the dye into your wrist and 15 minutes late you’re put under the scanner to check the walls of the heart. The nurse was kind of aggressive with the dye. You’re meant to administer it slowly, but no... she shunted that damn needle into my hand like a pressure hose. Dan managed to walk me back out into the waiting room before I keeled over in front of everyone. Interestingly, I had the most amazing dream whilst I was “out for the count”. It was a cool British Winter’s day and I was snuggled up under the most amazing duvet. I didn’t want to move or get up, yet something kept on trying to pull me out of this amazing feeling. I woke up with a start. I was covered in sweat, I had four nurses holding my arms and legs up, smelling salts under my nose and a very upset Dan standing above me. They moved me to a small room to recover, and  fed me apple juice to try and get my sugar levels up. I proceeded to tell Dan about my wonderful dream, and almost how horrible it was to wake up again. He went white as a sheet and asked me not to tell him that ever again. It turns out I’d stopped breathing and had been turning blue for nearly a whole minute after I’d fainted. He’d physically slapped me across my face trying to shock me back into life and genuinely thought that momentarily he’d lost me. I had no clue in my happy little place. Interesting to think that IF that’s the other side, well, I won’t worry so much when it is my time - let’s put it that way. I didn’t tell my parents that story for a good year, purely because I thought they’d freak out. I was right!

Last but not least of these experiences revolves more around Dan in the hospital rather than me! Two years ago he had to experience what I can only call a major operation that NO man would ever voluntarily put themselves through. I will not go into details, but lets just say it left a 8 inch scar in a place that is super uncomfortable even today. Due to the way that hospitals work here ... I became his nurse for weeks, whilst this operation healed. What’s worse is that this operation was open/loose stitched as it needed to be healed from the inside out. (I wont post a picture!). Suffice to say that Nurse Jen was excellent at doing everything except for administering the injections, of which, Dan, the poor soul had to do himself as I found myself going dizzy as soon as I’d mixed the antibiotics to flush into the cannula. 

 The best part of this story though, was the check up two weeks later. When the Doctor heard what I’d been doing he’d invited me to take a look at what he had to do next, which involved removing and re-stitching said area. (It was fascinating, I love this kind of thing!) However, the doctor did most of it without giving poor Dan an anaesthetic. Half way through, he called for a morphine needle... and that’s where it all went wrong for me. As soon as I saw the needle, the room suddenly went smaller. I excused myself to go out and get some air. I went to the toilet to splash myself with water and next thing you know, I’m on the ground. So, I pick myself back up and take myself outside to sit on the marble steps for air... except I never made the marble steps. Well, I did, kind of. I made them by fainting onto them, knocking myself out and smashing my

glasses. I woke up in the bed right next to Dan. The doctor visited me and couldn’t understand where I’d come from.. once again I’d turned so green he didn’t even recognise me! It was only when I managed to choke out that I was with Dan he realised I was the same girl who’d been helping him in the operation not ten minutes before! Lord knows what people must have thought of us that night. I looked a right mess and was still slightly dizzy and concussed, Dan was high as a kite and we both stood outside of McDonald’s, swaying on our own as we downed a large pack of fries and nuggets purely for some energy.

 I’ve had a few hospital experiences since then, fortunately nothing on the same scale as these. The food poisoning and hospital experience that I had last year was so bad that I almost got used to having needles and cannula jabbed into me. I definitely faired better that time...maybe it’ll hold me better stead for next time.

Anyway, I hope you enjoyed reading my adventures with needles. There’s a small tattoo that I would really like to get, yet I still just cannot get over the needle fear, one day... maybe. Until then, no more injections please!

But you don't look sick?!

The victim of any Chronic illness will readily understand the following:

"Hey, how are you today? Are you feeling any better?" - The dreaded opening sentence of basically everyone you have to socially interact with.

You then have two options:

1) I'm fine. 
2) No, I'm really not.

The first one you're blatantly lying through your teeth on.. but by then you're so fed up of the same old rhetoric that you just smile and wave. The people close can spot it a mile off. Others, not so. Some will just gloss over it, others will stop you then and there.

The second option causes a variance of retorts from the patronising "Oh you'll be fine, just give it time" to "Oh no, aren't you ever well?" or how about the famous.. "You're still ill? But you look better!" Then there's that horrible awkwardness afterward, when they ask you to elaborate and you either feel majorly attention seeking, or you're now then boring the pants off the person who asked the question.

You also get this strangely odd feeling, as if you have to validate it. If you're out of the house for an hour or two purely to stop the madness from setting in, or you have a little energy for a change. It's like a slight guilty feeling from the fact you don't look like you're sick for a change.

Lately I've given up on trying to respond full stop.  I've had a multitude of health issues again, that I'm just battling on with. (FYI This isn't a cry for attention, it's just life.)  I'm no different to a vast percentage of the population. In fact, after recent events, I'm feeling quite bloody lucky to have been dealt the cards that I have.

This is just a little blogpost to tell people to be kind to all - You don't always know what's going on behind that smile and wave.

A touch on the poorly side.

So, my immune system has taken a nice little nose dive again.

I’d like to think it’s just bad timing and bad luck being Winter and all, but having the flu-like symptoms (Including an evil reoccurring cough)  from the end of November till now kind of hints at a more sinister underlying problem. I’ve been in remission from ME/CFS for nearly ten years now, it only tends to crop up for me to catch colds and bugs a lot easier than others. It’s quite obvious that I’m not the healthiest person, despite my efforts at a balanced diet and exercise. I’m always the “diseased” one, or the “unlucky” one. It doesn’t take long to see that if there wasn’t the drugs there are today, natural selection would have come for me a very long time ago. All I can do is fight, the problem is that at the moment, every day is a fight. I think this is why I’m writing this blog post, a few friends have recently pointed out that I have a “cold”, not to sound over dramatic, but it’s anything but a cold.

Lately, every morning I wake up and struggle to get out of bed, let alone get moving. I keep myself buzzing by a shot of caffeine and sugar and foods throughout the day for energy.. and by about 4pm every day I’m about ready to crash into bed. I’m lucky I last that long really, I make myself. I miss feeling normal otherwise. There was once upon a time when I couldn’t even manage that. Getting out of bed and having a shower was about it for my day. My Mum would have to help me with everything else. Being bed bound, day in, day out for a very long period of time is not a fun thing.

I’ve been to the doctor; she says there’s nothing she can do after two sets of antibiotics.. It’s viral. No amount of antibiotics will cure. It’s a case of looking after yourself. So, instead of my normal bouts of exercise, I find myself laid up in bed with another book, or in the bath trying to stop my bones from aching so much.

It’s not doing my morale any good. No exercise makes Jen a grumpy girl. I feel fat, depressed and lower with every evening that passes. Every time I go to bed thinking, “Ah well, tomorrow is another day, I’m sure I’ll feel better in the morning”. Every morning I wake up the same: cough cough, splutter splutter… urgh! Every morning I promise myself that night I’ll go to the gym, or for a swim and then it gets to the evening and I’m wiped out on the sofa. I’m going crazy, I’m desperate to get fit, but knowing how lifeless I feel, physical exertion is the worst thing I can do.

I’m keeping positive and hoping this isn’t the beginning of a relapse.. Staying positive is the way forward. Just a blog post to say bear with me, really.. I hope now you see that it’s not just a cold. I’m not a hypochondriac, I’m genuinely trying to battle with my immune system.

I’m just going to think that in a few months time I can look back on this post and think, hell… I’m so glad I’m not like that anymore! In the meantime, my bed is my saviour. If you want to know the best way that M.E can be described... Pease check out this link: 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I've spent years trying to explain M.E. Conversations that lasted for hours...  This wonderful person managed to sum it up in a 5 minute piece.

All about ME... Part 1.

Someone asked me to explain the history of my illness the other day. I don't know how I can compact this into a blog post without writing a whole essay.. It's quite a task! Gradual parts, I think, is the way forward. I didn't realise quite how much of it I blocked out my brain until I talked about it with my parents a little while ago. Hopefully it makes sense; here it goes:


Growing up; I was a bubbly blonde happy go lucky girl who took part in practically everything. I loved life and spent most my time at gymnastics, sea cadets, dance, cycling and tons of other things. I loved school, I was a normal kid who was rarely ill.


Age 10: I moved schools due to moving house. (Big Mistake of life No1.) I missed my friends chronically and for some reason I could not glue into this school whatsoever.


Age 11: I moved into a class where I didn't get on well with most of my class mates. I only had one friend (The wonderful Beth, who is still near and dear to me) and my teacher decided to put her into a different class to me. 


I got bullied, physically and mentally by a few girls in my class. One would even be as so bold to kick my legs on the way home from school despite walking back with my own mother.  I got sworn at, spat at and pretty much humiliated in front of my whole class on a regular occasion. Kids can be so cruel.  The reason? Because I spoke nicely. Supposedly I was too "posh" to fit in. I'm a very friendly and open person and it really got me down. I also got accused of stealing a (cheap and half used) lipstick by a girl who then spread the rumour through the whole year. I hated not being liked and for some reason I wasn't just disliked.. I was pretty much hated. Not that I was ever popular in my previous school but this was another level of loserdom. I didn't want to go to school any more; it was misery. I pretty much didn't want to be alive anymore. My family and Beth were about the only things keeping me going.


Not that I knew it for many years until being told by Great Ormond Street, but I'd actually contracted Glandular Fever through my brother at the same time. It all went downhill from there. The combination of the Kent Test (11+), being bullied badly and the GF my body started to cave in. I couldn't eat without being in pain, I lost so much weight and I physically couldn't get out of bed anymore. My body ached all over, my throat was sore, my glands were up and I could barely make it up the stairs at home without giving out half way up. It took forever for the doctors to diagnose me, a good year at least. Problem was ME/CFS, back then was non existent. Known as "Yuppie Flu" or "The Fakers Disease" If only!!


 Luckily my parents took me to a private physician out of pure desperateness and even luckier for us, he happened to be one of the leading doctors in the field of ME. He wrote to Great Ormond Street to get me on the list to see the specialist.. but that didn't happen till quite some time later.


In the meantime I'd passed my 11+ and had been accepted into a local all girl's Grammar School. (Not going to name names here) My parents were very proud of me bar the fact that I struggled with life. The new teachers had reassured my parents that I would be looked after and helped with my learning considering I struggled to concentrate for an hour without developing sickness and dizzyness. I lost count of the amount of times I'd fainted.. I'd just keel over at any given moment. Beleive me when I say, that school = Biggest Mistake of my Life. 


I spent the Summer in hospital.. about 7 weeks being "monitored". I had ECG's, blood tests and   practically every other test under the sun to see what was wrong with me. It was a boiling Summer and I'd be huddled up under fleece pajamas and hot water bottles. All a bit strange really. The doctors still couldn't figure it out although they had worked out I had developed at least one stomach ulcer. (No wonder I couldn't eat!!) I dropped down to well under 5 stone and spent pretty much most my time in bed, or in a wheelchair. By now I had such bad insomnia I was lucky to get 3 hours sleep a night. My poor parents; they were at their wit's end. 


I think that's enough for now. Considering that's only the first 2 years and my concentration is failing me. Don't pity me though; this story is what makes me who I am now. A walking, talking survivor who happens to know everything and anything about drugs :-)


Part Deux.. coming soon!

A knock back for Chronic Fatigue/ ME Sufferers..

http://www.abc.net.au/news/2012-01-06/virus-theory-for-chronic-fatigue-dismissed/3761308


Anyone who knows me knows about the battles I have had in my life with my immune system... The link to the above is quite sad news for CFS sufferers all over. I've never been one to hold out hope on having CFS "pinned" but it would have been nice to have confirmation of at least how it started. The doctors at GOSH were convinced I developed mine through a bout of Glandular Fever, but I guess we'll never know for sure. All I know is that I made it though to the other side.


This is something that does not tend to get in my way these days, however, after such a stressful week in the world of me, the dreaded symptoms return. I've got a nice cuddly bottle of Maalox (As well as my other vitamins and boosts) sitting beside me waiting for the fun to commence...


I highly recommend reading this link for the Spoons Theory, not for myself, but encase you know of anyone with Lupus, CFS, Fibromyalgia or practically any immune system disorder. You may have never even heard of these conditions, but I bet you that you know someone who has one of them: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

This link made me cry when I first read it, in the years of being ill I was never once able to put how I felt into words. It's helped me a lot and perhaps it might help you.