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The Waiting Game. 

Waiting for doctors

Life changes when your health deteriorates. Suddenly you’re no longer living on your own schedule anymore. Every aspect of your life beats to the tune of someone (or something) else’s drum.
I used to choose what I did with my time, how many hours I worked, if and when I socialised, what activities I did to fill my time. (Because in those days time was something to be filled with limitless and varied options.) Yes I still had exhaustion and pain, but nowhere near the life sapping amount I have these days.
But now? Well, let’s just say, things have changed. My health decided to strip me of my energy, and my ability to work. With that went my social life, which doesn’t matter as I don’t have the energy for it anyway. Finally those time filling activities, they went out the window too. I’m sure you can guess the culprit.
So now I wait.
I wait for doctors appointments. I wait for tests. I wait for the results of those tests, so I can wait for doctors to decide what they want to do next. I wait for medications to work into my system, I wait to wean off other medications. (It’s an ever changing cocktail.) I wait for pain killers to kick in. I wait for my body to let me sleep. I wait for my husband to realise he can do better. I wait for my daughter to wish she had a fun mummy. I wait for the summer when my joints ache less. Then I wait for the winter when I’m less likely to collapse.
Everything is waiting. My life is waiting. Waiting for a miracle so I can ‘get better’ from my list of incurable chronic ailments.
I know what you’re thinking. Wow, that’s depressing!! Well yes. For a very long time it was. In fact, sometimes it still is. But luckily my husband assures me he will never get sick of me. My daughter (and step son) fill my days with smiles, stories, cuddles and laughter. My pets provide companionship whilst I’m stuck in bed. My few friends that remain are loyal and understanding. My new friends from various medical support groups are loving and funny. My good days are spent making the most of them as best I can with the people I love.
So I wait. But whilst I wait, I live. It may not be the life you have, or the life I expected. But it’s the life I have now, surrounded by the loving family I’ve created, who have stuck by me through the toughest of times. I’m happy with that.

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You have GOT to be kidding me?! My beautiful teeth!

teeth discoloured from illness

Unfortunately I seem to find myself uttering those words FAR too often. The most recent time being this very morning when I happened to catch a glimpse of my mouth in the rear view mirror of my car.
Where once there were pearly whites I now seem to have teeth that are rapidly on the way to being a discoloured mess. Gutted does not even begin to cover it. (I did try to take a picture of them for you, but I looked like I had a tash, so that went out the window.)
I put up with a lot when it comes to my illness. Collapse in public? I’ll laugh that off. Have a camera shoved in various orafices? Sure! It’s all for a good cause. I’ve even pooped in a bag, collected a giant vat of urine and had a tube repeatedly shoved in and out of my stomach via my nose. Basically, what I’m getting at is that I’m pretty easy going when it comes to pride and dignity these days. But my teeth? I’ve always kinda liked my teeth.
Since I was little, people have always said I’ve got a nice smile. I’m not a pouty girl, and I hate it when people look miserable on photos. I’m always the one in the frame with the big goofy grin. How’s that going to look when my teeth are black and crumbling? I don’t know, and I’m not willing to find out.
This morning after the school run I scrubbed my teeth to within an inch of their lives. I’m going to stock up on whitening toothpaste and check what vitamins might be a good idea. If that doesn’t work? Well, I’ve got a dentist appointment at the end of the month, maybe I’ll enquire about veneers. (I’d even consider a denture over a murky grin!)
Up yours disabilities!! You may take my pride, but you will never take my toothy grin!!

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POTS – Let’s talk showers…

POTS shower exhaustion

Let’s Talk Showers!

POTS shower exhaustion“Wow! I feel so refreshed after that shower!” said no person with POTS, ever. Showering is not a relaxing pastime. Nor is it ever possible to have a ‘quick shower’ with POTS, so let’s forget that idea right off the bat. Showers take time, preparation and energy. Lots and lots of energy. You have to ask yourself, do I REALLY need this shower? Am I going to be in close proximity to other human beings? Will a GP or member of the opposite sex be poking around anywhere? Am I 100% sure I can no longer get away with wet wipes and dry shampoo? If the answer to any of those is NO, hold off on the shower.
Next ask yourself, do I have the energy? Do I have the time? Am I well enough? Again, if the answer to any of these is NO then leave the shower. It’s not worth the risk. Wet wipe, dry shampoo, deodorise, and pray to whichever God you prefer that you don’t smell too bad.
So the stars have aligned and everything has fallen into place, today is the day! You will be clean!!

First things first, the prep. I try and lie down for a rest before my shower, in preparation for the ordeal to come. Also I hydrate and make sure I’m in the middle of my midodrine dose, optimum time for exertion. If I’m feeling particularly with it I’ll strip off while laid on the bed. If not I end up teetering on the side of the bath, desperately trying not to lose my balance whilst removing my two pairs (minimum) of socks.
Suitably undressed it’s time to hop on in the shower!! (Because it’s just that simple, NOT) Hold on to anything and everything. Ideally a handle. But if not use the sink or a handily placed husband or partner. Whatever you do DO NOT grab onto the shower door. This will end in your naked wet body hitting the floor at speed.
You’re in!! Woop woop!! If you’re lucky you will have a shower chair. I, unfortunately, am not lucky. My shower is over the bath and there is no chair that will fit. If at all humanly possible I will stand in the shower. However, if I’ve ignored my own advice and pushed myself to shower when I shouldn’t, I often end up sat in the bath with the shower over me. This often makes me shiver uncontrollably as my legs are out in the cold air and not under the nice warm water. Fun times!
Notice I said warm. Not hot. Hot showers are things I dream of. They’re like a paradise just out of my reach. I can’t do hot showers anymore, my body punishes me with hives and syncope if I try.
Ok, so you’re finally in the shower. It’s about this point I usually need to pee. Do I really want to go through the rigmarole of getting out of this bloody shower?? I’ll let you answer that one.
Now it’s time to wash. First things first, let’s get the hair out of the way. Get your shampoo, try not to swear too much when you drop it (again), if possible use your handily placed husband to pick it up for you. Otherwise, try and have several shampoo and soap options, so if you drop one, or five, you aren’t having to bend down to get them. Wash your hair as quickly as possible as raising your arms is not only painful, but induces your symptoms. As the soap washes down your body swoosh it about in order to give everywhere else a clean. Grab your razor and go to town on those arm pits. Consider, for a millisecond, shaving other places. Then sigh and realise you’re done. Your energy ran low about the point you got undressed, and now you’re running on empty. Maybe next time?
Shaking uncontrollably grab onto the sink, your husband, anything. Keep a tight hold onto everything at this point, everything except your dignity. There’s no place for dignity with POTS. We laugh in the face of dignity! Stumble, clamour or crawl towards your bed. Preferably wrapped in a towel, but don’t fret if that’s too much effort. You’re in your own home, a bit of nakedness is fine!
Finally you made it! You’re freezing and wet, but you’re clean!! Congratulate yourself as you collapse on the bed and rest, whilst contemplating if you can cancel your plans. Because now you’ve showered your done!
What about drying yourself, you ask? I just peed in the shower and didn’t bother to shave my legs (again), do you honestly think I’m gonna dry myself when the air will take care of that for me?! Nope… Besides, the ‘just dragged through a hedge backwards’ look suits me.

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The ramblings of an insomniac.

insomniac can't sleep due to Chronic Illness EDS POTS

Once upon a time I could sleep.
Well, I assume I could. Surely I wouldn’t have got this far in life without it? Plus, my mother used to assure me I slept with my feet in a grow bag, hence being a fairly tall girl (taller than my husband). So in order to grow so proficiently I must have slept, right? I bet I slept at night too. When I was supposed to.
Often I dream of sleeping. Of drifting off into a blissful slumber and waking up refreshed and invigorated (HA!). But even they are daydreams, not those cool dreams you normal folk have.
You see, I don’t sleep anymore. I haven’t slept properly in years. Even if by some small miracle I do drift off, it’s short lived and not particularly restful. If I’m super lucky it’ll be combined with night sweats and bad dreams. The kind of dreams that leave you with a terrible feeling in the pit of your stomach.
More often I just lie here, restless and uncomfortable, wishing sleep would come. I listen to the sounds of the house. My cats milling about, my husband snoring (count to ten, you’d miss him if you smothered him), that random noise that you never quite know what it is. I drink my water like a good girl and make endless trips to the loo like an old lady with bladder issues. I write on Facebook and play games on my phone. I go slowly and quietly mad.
This is my life. If I had any less sleep I could probably start hanging out with the gang from Twilight.
What’s the point of this post?? There isn’t one. I’m rambling. I’m making no sense I imagine. But you know what they say, misery loves company. If you’re awake in the night and reading this, at least you know you’re not alone!
To the rest of you… sweet dreams. Don’t take your sleep for granted and remember, a tiny part of me kinda hates you for your sleep pattern right now!!

By Jennie at This Little Life of Mine

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My Heavy Load – Living with an Invisible Illness

Not every disability is visible

Hi everyone! My names Jennie and I’m a 29 year old mum with several chronic and debilitating conditions. I’d like to share with you what life is like for those unnoticed disabled. People like me who struggle on a daily basis, but look fine on the surface. Hopefully through blogs like mine, and others, we can spread awareness and gain a little understanding.

So, I’m disabled. You wouldn’t think it to look at me, but I am. It’s a cruel joke that one of my conditions actually genetically predisposes me to look young and healthy, whilst internally I have the body of a seventy eight year old. (That’s a direct quote from a doctor.) Sometimes it’s nice to look normal. To slap on a smile and pretend to be just like everyone else. But mostly it’s hard, and exhausting. So very exhausting.

Imagine spending every day carrying a tonne of bricks on your back. They’re heavy. They grind you down. Your body creaks and aches from the weight of them. You never get to remove your load, not even to sleep, so even lying down the sharp edges jab into your already battered body. Sleep is impossible. Surely someone will help you? Nobody would let you struggle through life that way?? The problem is, your bricks are invisible. None but you can see them. So how can people help? They see you shuffling and stumbling from the weight, to them you’re just another young drunk. On busses and trains they hog seats, not knowing you’re ready to crumple. Your exhaustion, they say, can be cured with a little rest and some good sleep, a better mental attitude. As for your bricks? Well, surely they can’t exist. If people can’t see them, they can’t be there.

People soon stop attempting sympathy. Friends don’t call anymore. Whispers start about how all you seem to think about is the burden your bricks have on your life. Soon, your bricks have taken everything from you.

This is life with an invisible illness. Please, I implore you, if you know anyone with an invisible illness, help them carry their load. It means everything just to have a hand to hold on this hard journey.

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