Such a Scrounger…

Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate, is the stigma attached.

So here it is. I’m 28 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well paid, full time, job. Now he’s stuck with my label of ‘Scrounger’.

Firstly, I’d like to address my husband (and anyone else on carers allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went round to a lovely old dears house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a Scrounger? I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So think about that when you assume someone who is a carer has the easy option.

Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologise for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point I was collapsing in the workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughters school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child whilst on benefits is a whole other debate), in order to function I had no choice but to give it up.

So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain. (Which is best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d LOVE to work. I went to university. I was supposed to have a career. I wasn’t supposed to be a burden on society. I had a plan!

But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have if ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are scrounging scum.

You feelin’ me?!

One of my conditions is POTS. It stands for Postural Orthostatic Tachycardia Syndrome. Even though there’s thousands of us POTSies out there, it’s still a relatively unknown condition that’s difficult to diagnose.

If you have a friend or relative with POTS you may choose to do some online research on their condition so you can better support them. (Big round of applause for caring if you do!) This is a lovely gesture, but please, only do this in order to learn. Remember we are all different, we often have intermingling conditions, and we have already tried EVERYTHING imaginable to get better. We don’t need Dr Google giving us unsolicited advice. Compassion, understanding and company is always welcomed though.

It’s the idea of understanding that’s prompted this post. Often I see POTS described as ‘an increase in heart rate of 30bpm on standing’, which is true. But it is oh so much more. Better articles will explain that living with POTS is akin to living with heart failure in the effect it has on your body. This is a little better at describing life for me. But unless you’ve lived with heart failure (which I hope you haven’t) you’re still not going to know how that feels.

So I thought I’d try to describe how POTS feels to me. Please bare in mind I have LOTS of random stuff wrong with me, so I apologise if not all the stuff I talk about strictly fits with POTS. It’s hard figuring out which ailment goes with which condition these days.

So first, the heart rate. Yes it increases when I stand, often reaching 154 and above. This isn’t bad for many people with my condition, who can go much higher. Luckily I’m not affected when seated, so I can still drive. When your heart is racing it feels like fluttering in your chest. But not sweet little butterflies, noooooo. When my heart races it’s like I’ve got a giant ass albatross in there! Soon, as my heart is going so fast, I start to get dizzy and lightheaded. My head and feet don’t seem to be part of the same body, and I’m almost detached from myself. This makes me clumsy and I often look drunk when walking, or I stumble and trip. One of my talents is tripping over nothing, the other is walking into things. Door frames, furniture, people, anything is fair game.

After being upright for a very short time (often immediately on standing) my body feels like it has lead weights attached, trying to drag me to the ground. Everything is heavy and I’m walking through waist high mud. My energy is sapped as it takes so much (three times to be precise) more to do anything. It’s at this point I’m usually clinging on to someone or something for dear life. If I’m not seated (or preferably laid down) in time, then my body will give out on me.

I’ve been told all the colour drains from my face and I crumple to the ground like a puppet that’s had its strings cut. What I know is all of a sudden the world shifts. Dark engulfs my vision and I can no longer keep tension in any part of my body. I used to think I remained alert, but having not realised a woman was screaming when my head connected with the floor in a local supermarket, I now appreciate that’s not the case. As the world swims back into focus its at that point the pain hits. Let me tell you something, floors are hard!! Pavement diving is not a sport Id partake I given a choice! I lie there, usually crying (I’m not sure why as I’m not upset) and shivering uncontrollably. I can’t sit up too fast or I’ll go again. But when I do, I feel as though I’ve been run over by a freight train for the rest of the day. I usually also end up with whiplash and sprains due to my other joint condition.

However, this isn’t the whole story. My condition causes my body to constantly be in ‘fight or flight’ mode. My autonomic nervous system (the one that controls everything you automatically do such as digesting, regulating temperature, circulating blood) is constantly on high alert. I am the human version of bambi in the woods. Because my body is constantly thinking danger is on the way it does some really stupid things. It sends blood away from my none vital organs, like my digestive system (because according to nature food is not vital, stupid nature) leaving them slow and sluggish. Or sometimes way way way too fast. Which is always fun. My thermostat is always off, so I’m either too hot, or freezing. Or, if I’m really lucky, both at once. My blood pools in my hands and feet, making pain I already get there, worse. Plus it turns them a rather fetching shade of purple. Then, as well as completely exhausting me, my lovely body won’t let me sleep. After all, could you sleep if your body was in constant high alert, waiting for a wooly mammoth to attack? (Fight or flight mode is a throw back from when we were cavemen.) I’ll give you a hint, the answer is no. No you couldn’t. You’d just toss and turn in bed, sweating one minute, freezing the next, and every now and again twitching for good measure. Just because.

So that’s the bulk of it. I know there’s so much I’ve missed out, but my eyes are struggling to focus (that’s a lovely symptom right there) and my hands are hurting. I hope that my description has helped you imagine what it’s like for us a little better. Maybe next time your friend with POTS is being cranky (me every day) or boring (again me) you’ll find it a bit easier to be understanding.

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Just call me Mrs Doolittle.

Obviously the main sources of joy and comfort in my life are my kids and my husband. But aside from them I get a lot of happiness from spending time with my pets.

From a young age I’ve always had an affinity with animals. I remember once being in an airport in Zante where birds had taken residence inside. I put a few crumbs of food on my shoulder and a sweet little bird hopped on, soon after it was eating out of my hand. Literally. Another little encounter was on Gibraltar. Everyone was putting their hand towards one particular ape, who would shake it. I thought I’d give it a go. With me however, he didn’t shake my hand, he gently grabbed on and crawled up my arm! I was walking round with him for a few minutes before he crawled off, and scratched his balls in appreciation. So not only have I always loved animals, they seem to quite like me.

Fast forward to today and my home where we have three furry members of the family. The first to come along was ‘Titch’ (aka Titchy-waah), so named because he was tiny.

Titch is very much a softie. He loves hugs and cuddles and wouldn’t hurt a fly. Literally. Flies confuse and frighten him. He just wants love and attention from everyone and everything at all times. He is such a contented pup that you’ll often find him sleeping on his back, or curled in my hubby’s arms like a baby. His talents include jumping from the floor right up onto the back of the sofa, somehow managing to get on the kitchen sides, and gassing out whole rooms for hours. He’s a little bugger! But we love him.

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Next came the cats, Mickey and Minnie. (I feel the need to point out that we didn’t name them, though I do like the irony that they’re named after mice.) Mickey (Micklemus) is very much a mummies boy. He’s my cat, and he’s not afraid to show it. He will lie with me all day when I’m stuck in bed, and has recently started coming to tell me when it’s bedtime at night. His favourite place to be is snuggled in bed, preferably with his bum in my face. He does not like Titch. Not one bit. However he has started venturing into the room on an evening, so fingers crossed there may be a truce on the cards.

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Finally there’s Minnie (Minnimus), the other woman. Minnie is a complete floozy and is infatuated by my hubby. She purrs round him and constantly wants snuggles and kisses. (I’m not jealous at all that the cat gets more kisses than me. I don’t know what gave you that impression?) It is ONLY when my husband is with the dog that she will begrudgingly come for a cuddle off me. Oh and breakfast time, she gets REALLY affectionate at breakfast time. Honestly, I feel a little used by Minnie, but I love her all the same.

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So that’s my pets. My little furry companions, who give me endless smiles and comfort without even realising they’re doing it.

Broken Promises.

Sometimes I actively hate my body. Today is one of those times.

Yet again it has let me down. It has not lived up to its end of the bargain. It has promised me something and delivered only disappointed and pain.

It probably seems odd to you that I speak of my body in this way. Like an entity I do battle with. But that’s how it is for me. My body is my enemy. My monster in the night. My prison cell. My torture device.

I must be kind to my body. I must treat it with respect and not push beyond my limitations. I must rest when I need to and eat well, take my medications and generally do what I can to appease the beast. But what’s the point?

What’s the point when I do everything right, but still my body betrays me????

I do everything right yet I still end up with tears down my face.

The point is that I have to try. Maybe tomorrow will be better. Maybe tomorrow I’ll be joking about it all again.

The Waiting Game.

The Waiting Game.

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.

You have GOT to be kidding me?!

Unfortunately I seem to find myself uttering those words far 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!!

Let’s talk showers….

“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.

First things first. 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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