Yes I feel unwell a lot, but you can keep your ‘sick note’ comments to yourself thanks


When I was much younger, I didn’t mind being ill. It was never ideal, but the odd cold and a smattering of bladder infections didn’t seem so bad. I got attention, maybe got to stay home from school and lay on the sofa with a duvet, watch TV I never usually saw- hardly the dream but still not that bad. 

Fast forward 15 years and all I want is to not be ill, it’s the top of my wish list above everything else, but sometimes it feels like ill is all I am. I blame a big part of that feeling on other people. Don’t get me wrong, I’m okay and I go to work all week long and lead a normal life, but in the background there’s always a symptom. Something always hurts. There’s always something I’m worried about or feel like I need to get checked. I hate it, I try my hardest to overcome it and work on being well and making my body stronger, so there’s nothing worse than someone coming along and announcing “Oh you’re always so ill, you sick note!” Thanks so much for your wisdom pal, please go away indefinitely. 

The older I get, the more I cannot stand to be asked how I manage to be sick so often. The more I find it jaw-clenchingly frustrating to hear people suggest I should try harder to not be unwell, or ask how it’s possible I’m not feeling good again. 

Being chronically ill is hard enough without trying to make others understand. If you know someone who’s fighting a long-term condition, chances are the last thing they need is reminding about it, or to have people asking how it can be that they’re spending another day missing out. 

I choose not to tell people, even close friends, about a lot of my symptoms or consequences of having Ehlers Danlos. On the whole it doesn’t stop me having a life. I have a job, I socialise, I travel a bit and I exercise when I can. It’s the days I  have to limp, the evenings I spend aching all over, the hours I lose at night to worrying about why I’m bleeding into my skin on my legs that have an impact. When my physical symptoms were worse a few years ago I did miss out more and it drove me round the bend to be told I should eat more fruit, try getting early nights more often or the very worst: “You could just come for a bit, you might enjoy it.” YES THANKS I WOULD LOVE NOTHING MORE THAN TO ENJOY MYSELF BUT MY WHOLE BODY HURTS AND MOVING IS HARD. 

I know I’m ill, I know I might seem lazy sometimes at weekends, or be against going out, but it’s because I’m sick and the absolute last thing I want to hear is a dig, a comment or even a throwaway remark about it. I would trade many things to be normal and have good health and be living in the average body of a 26 year old, as would so many others. 

It’s really difficult to explain chronic or invisible illnesses to people. It’s hard to understand them too, so I get why people see it as a flippant thing, but it’s frustrating and grinds you down, which is the opposite of the support that’s needed. Be kind to that ‘sick note’ you know, because believe me they would much rather be out living life than stuck inside the limits of feeling unwell. 

Trying to find comfort when illness is beating you

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This time three years ago I was going through a truly terrible time with my health. I was ill, I was in pain, I was in and out of hospital and GP appointments, having blood taken every week, struggling to go to work and feeling completely defeated by a body I felt trapped in. This wasn’t the first time I wanted to unzip myself, chuck my body away and start again. It was just the latest bad spell, but also the worst I’ve ever had.

Dealing with long term, chronic illness can be really awful at times. It can be scary, lonely, confusing, frustrating and incredibly upsetting. That feeling of wanting to bang your head against a brick wall repeatedly is common, as is the feeling that nothing will make the situation better. Nothing. Doesn’t matter how many of your favourite things you try and cram into one day, while snuggled up in bed with supportive people and all of the carbs, nothing will help you feel like you again. This was pretty much my default feeling for six months.

Needless to say, it was bad times.

I haven’t sunk that far into a health black hole since then. I’ve managed to keep myself teetering on the edge during the worst days, but mostly I’ve been clear of feeling that only bad things can happen when it comes to wellness and my body, which is promising. It’s definitely a feeling I aim to keep up well into 2017 and beyond. The struggle still exists, like right now for example, I am at work in a lot of pain just because I went ice skating yesterday- ‘fun things can’t happen to me because I pay for them in pain.’ This is not how I want to be feeling. I need to remember there was always a small chance it wouldn’t agree with me. That doesn’t make it any easier though.

It is incredibly draining to be battling a health problem and feel like there’s no one around you that understands or who can really help or make a difference. Be it mental health or a chronic pain condition, the stress is the same. I’ve talked to many people who suffer with conditions similar to mine through taking part in online chats, networking on Twitter and reading blogs on the subject, and though I would never pretend to understand how one person feels, I know that there’s a level on which we can all relate. There are problems that crop up and again and again such as:

-Trying to explain to friends/families/colleagues why you are feeling ill but knowing they won’t be able to truly understand.

-Struggling to deal with the explanations people want when you can’t follow through with a plan, can’t attend an event, or just need to stay home because you’re having a flare.

-Dealing with how unfair it feels that people around you have good health when you are constantly dealing with symptom after symptom.

-Trying to not let health win- basically trying to make sure you can still lead a happy life and try to come out on top, even on the bad days.

-Accepting that sometimes the bad days will end bad and you can’t make them better.

-Getting setbacks when you’ve been feeling well for a while, or trying hard to make improvements to your health.

These are just a few of things I know I feel when it comes to my chronic condition, and I’ve discussed all of these with various people who struggle with health problems. From IBS to endometriosis, bad period pains every month, arthritis and even skin cancer- the diagnosis might be different, but it’s helped me a lot to remember that I’m not the only one. The universe hasn’t singled me out to suffer while everyone else has a party and a jolly good time of it. It takes a long time to take comfort in the fact that you aren’t alone in feeling ALL of the emotions and confusion, but it can help, even if just a little.

My experience of exercising with a chronic health condition

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Tonight I was at the gym and found starburst wrappers on the treadmill. Someone’s clearly having more fun while working out than me. 

I might not exactly be Kayla Itsines but for the past 9 weeks I’ve been doing something that’s made a massive difference to my health and wellbeing, especially mentally. Er yeah, you probably guessed it if you read the title- exercise. But not just random, sporadic sessions or meaningless 20 minute bursts on any free piece of gym equipment, I’ve had an actual routine. 

Exercising when you feel constantly unwell is not a high priority, I know, I’ve been there. I’ve also been in situations where doing anything physical ( like walking 15 steps) would have been impossible, so I understand the severe end of the spectrum as much as the mild. There are tons of chronic illnesses that stop sufferers being able to exercise, from chrones, to endometriosis or joint related problems like mine- the list is endless. What I’ve been conscious of ever since being diagnosed with Ehlers Danlos, is how much I need to get fit but how much it could end up making everything worse. It’s a catch 22. I was told to get fit and strong or end up immobile, yet my body is fragile and my joints dislocate and my body doesn’t function right. There’s a very careful balance to strike. 

The idea of going to an exercise class after a day of bad pains would make past me feel horrified, and it sometimes still does. Putting up with sharp, dagger pains in fingers, legs, feet, ankles, jaw and basically any body part you can name leaves you ready for bed and painkillers, not spinning. What I’m slowly learning though, is that when you know how to judge your body, you can do the right amount of exercise without leaving yourself bedridden and weeping with regret. It is possible- and I realise not for everyone, believe me I feel your pain. I dread the next time I’m under a duvet covered in deep heat unable to lay or sit comfortably or lift my phone up without feeling like I’m being beaten by various blunt objects.

My determination to keep a run of good days, and now good weeks, has also made me extra careful to not push myself and get cocky. I need to remember I am not Britney (have you seen her abs lately though?). By dipping my toes in gently and not being scared to sit out or modify moves in front of a class full of people, I’ve given my chronically unwell body a whole new spring in its step. 

I’m currently doing spinning, circuit training, HIIT and a core class every week, plus some some gentle running. It’s a lot and more than really ill me a few years ago would have dreamed possible. This amount of exercise won’t always be possible, and I no doubt will still have weeks where I can’t walk downstairs properly let alone do box jumps and planks. The point is, I’ve tried out various things, taken advice from trained professionals and put together a routine that ‘having a good spell’ me can do. I don’t do everything exactly as instructed in circuits because my fragile shoulders would probably pack their bags and leave me, but getting over the fear of asking for help and not needing to be on the level of total strangers at the gym has meant I can do a Lauren circuit session. 

On days I exercise with pain, I take everything down a few notches. Less reps, less sweat, less effort. Showing up and just raising my heart rate is better than doing nothing at all. I also try to make sure I have what I need after- a bath, hot water bottle, deep heat and time for a long sleep. And I’ve bailed out on days where exhaustion leaves me napping accidentally in toilets or with blurred vision and brain fog. 

I want a nice body. I want to be fit. I want to feel physically good and I want to treat my body right- even if it does give me a bloody hard time. I don’t want my health to stop me. It will. I know that at times it will undoubtedly floor me and make me feel more engine failure than fitness fanatic, but by gaining the confidence to give things a go and setting some limits, I know I’ll bounce back and want to feel the way I do now- which is pretty bloody good and on track to serious confidence. 

If your health is bringing you down…

  
Raise your hand if you’ve ever felt personally victimised by you’re own health. 

I’m raising both of mine. If I had more hands I would raise them. I’ll even raise my feet. 

 For as long as I can remember I’ve felt like my health was a joke. Like someone out there was pushing buttons to make things worse for me. Maybe it’s a punishment. Maybe I’m just unlucky. Maybe I’m weak. Maybe I just need to man up and deal with it. Whatever it is though, it’s made my life unpleasant at quite frequent intervals. Having a chronic illness doesn’t help and I have to accept I’ll always feel a bit ropey, but even colds are out to get me. 

I eat well these days, I don’t drink that much, I exercise, wash my hands like we’re told to, use hand sanitizer on the tube…I do everything I can yet the germs can’t stay away. Basically, my milkshake brings all the germs to the yard and they’re like YAY PERFECT HOST BODY GIVE HER HELL. 

I’ve spent the last week trying and so far failing to fight off a really nasty cold with a killer sore throat. It’s still not gone. On top of that I’ve got joint pain, really bad fatigue, I’ve been limping, keep having nosebleeds and just before I got ill I had a mystery rash all over my arms. Just a standard week in my life. 

Well I’m bloody sick of it. I mean I’m seriously done. I want better health. I’m sick of feeling sick. I’m sick of being thought of as a ‘sick note’ and I’m bored of my health bulldozing it’s way through all the fun and good in life. 

If you feel like you’ve had a raw deal of it with your health then you’ll know how I’m feeling. It’s draining and tiring and unfair and makes me feel so angry. 

I’m determined that this year (once I’m over this gross virus obvs) I’m going to make positive changes. I can’t keep a mindset where I let the bastard keep me down. Health is so important and I feel like I do enough but I’ll do more. I’ll do basically anything to make it better. 

Chronic illness and all the other stuff in between, this is NOT your year. It’s mine. It’s March now. You’ve had your fun. You’ve done enough damage and now it’s spring and it’s getting lighter and warmer and nice things are on the horizon I’d like to ask you to F off. 

I’m going to get you health. You will be mine. 

If you’re out there feeling like your poor health is crushing your soul and leaving you depressed, I feel you. I feel you so much. If extreme positive thinking and positive changes make a difference that’s big enough to measure I’ll let you know. 

Suffering from something others can’t see doesn’t make it any less real

IMG_6064The other day I was on the tube. On the Northern Line. It was rush hour and it was packed, probably to a slightly dangerous level, as it every day. It was a bad day. A woman shouted at me and I shouted back and it was a Tuesday. The worst day of the week.

I get on the first stop of the line, so I always get a seat. I’m not that fussed about sitting. I commuted for the past three years standing, crushed against strangers with my mouth upsettingly close to armpits and chests, and I never really cared. I think you become immune to the misery of the rush hour crush after a while, which is for the best.

So there I was, sitting down, reading, looking totally able-bodied and pretty standard- which is what I am 75% of the time. However, there are some days where I can’t walk normally, or stand up straight properly, or support my weight evenly. Some days I limp from the minute I get up in the morning until I go back to bed. Some days I need to hold on to things to get up stairs and sometimes stairs are out of the question. There are even some days, thankfully rarely right now, where I should just stay at home and not move. I think if my hips could talk, they would regularly say “bitch sit down, we ain’t playing today.”

I’m not sure why my hips are gangster rap stars, but they’re not happy little souls.

That day on the tube, a pregnant woman got on,I didn’t see at which stop, and stood facing away from me, about three people down. I could barely see her through the crowds of people rolled together like a massive flesh burrito, let alone tell she was pregnant. Happens every day, I’m certain- pregnant people get on transport, takes a while for people to move. Well, I ALWAYS MOVE. I would damn sure have moved that day if I was nearer and noticed but I wasn’t and didn’t.

However, a woman standing in front of me, who had noticed, and was clearly harbouring a very bad mood (probably 5+ years of commuting on the hell that is the Northern Line) and she decided that she was going to get pregnant lady a seat. I was the nearest to her, so she started loudly telling everyone on the carriage how this ‘lazy ignorant girl’ was taking up a seat of the ‘needy’. She said some other similar comments (then I realised she was referring to me), and proceeded to tell me to ‘get out of the way’ because why would a young person need to sit. She went on a bit longer and people started to stare. She waved her arms around in my direction and pointed at my feet a few times. Then, a man moved. Pregnant lady looked mortified and I had to refrain from emptying my Evian bottle on this vocal woman’s head.

Not that she would know, but I limped, slowly, to the tube that morning. I walked, pretty much in agony and desperately needed to sit. I took painkillers for most of that day, I had to spend an hour the evening before with my legs elevated to stop them swelling and drain some of the excess blood that gathers down there- overall not a great time.

It’s not the first time something like this has happened. And this isn’t something that I can do anything about aside from wear a badge or explain it to complete strangers which will never happen.

The point is, to look at me, you would never know there was anything wrong. I’m even pretty sure some people close to me think I’m just a bit dramatic, which makes me keep this whole invisible illness quite low key. BUT IT IS THERE. I have a real, diagnosed, immensely painful, debilitating, exhausting genetic disease. Ehlers-Danlos is considered rare, but it’s more likely that it’s rarely diagnosed correctly, as are many conditions similar to mine.

I know people aren’t mind readers. I know you can’t expect people to think twice before speaking, but there are so many conditions that exist that we can’t see. A bit of thought goes a long way sometimes, that’s all.

 

Trying to do life with chronic fatigue

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If you suffer with chronic fatigue, you know about it. It doesn’t just hang around in the shadows, occasionally stopping by to cause problems, it can cling to you for days, weeks or even longer, weighing you down until you give in. It’s largely associated with chronic illnesses and is often part of conditions that cause widespread pain, but it’s a symptom of a lot of diseases and conditions and it’s something that is hard to get across to others.

Chronic fatigue isn’t like feeling tired. It’s not like having a really long day and feeling like you need to go to bed, it’s a crippling feeling of complete exhaustion, for absolutely no obvious reason. It’s kinda like how I imagine a dementor’s kiss would feel. There you are, just trying to get on with your day, and along comes the fatigue in it’s miserable black robe, ready to suck the life out of you. When I first got diagnosed with Ehlers Danlos, a lot of stuff fell into place. My tiredness levels had been all over the place for a long time. I thought I felt how other people felt. I thought it was normal to get a solid 8 hours sleep and then find yourself at work the next day practically unable to look at a screen or even support your own bodyweight. I just thought this was what it was like to be tired and have a job.

The doctor I was seeing at the time assured me this wasn’t normal. He cracked a joke about how everyone with a job was tired, but that I definitely shouldn’t reach a point of not being able to hold my head up after a solid nights sleep and good diet. I never tested positive for anything else that could explain the tiredness, so because it’s a common complaint among Ehlers Danlos patients, I’ve accepted it’s something that’s just part of life now.

There’s only so much you can do to get through the day when your fatigue levels are a certain height. Caffeine does nothing, fresh air barely makes a dent and there’s little you can get from food or water. Sometimes all there is to it is listening to your body and doing what it’s desperately asking of you- sleep.

Not so easy to explain when you’re at work. “Erm, sorry guys, need to to pop into the stationary cupboard for a kip. Back in a hour yeah?” and experience has shown me that if you make real attempts at explaining your severe exhaustion, it’s likely people will think you’re making excuses. That’s not to say there aren’t employers and people out there who understand listen, because I’ve been lucky enough to work with them, it’s just generally not a symptom that can be understood. I imagine most people would probably be thinking ‘we all get tired hun, wind your neck in’.

Truth is though, it’s hard to even joke about, because it’s so draining.

I can go for days now without feeling any of the affects of CF, and I’ve definitely felt a steady improvement for the past year. When it does hit though, it’s like you’ve woken up in a cloud of fog. Everything you do is made harder by feeling like you’re wading through thick clouds. It’s hard to concentrate, hard to listen, hard to be productive and almost impossible to do tasks to your full ability. Imagine trying to do a days work with a huge, blurry bubble over your head that stops you hearing or speaking properly. The worst I’ve ever had it was about a year ago, when I was unable to hold conversation for more than a minute and couldn’t remember what any emotion other than ‘fuck off’ felt like.

Needless say, it’s not a great mood lifter.

There’s few nicer feelings than when a CF sufferer feels the fog start to clear. Like walking from a grey, rainy street straight onto a sunny beach. Everything just improves and you feel like you can see, taste, hear and even move around better. For a while last year I did pilates (gentle, beginners classes) and I started doing the stretches at home after work, and this seemed to make a slight difference. This was around the time I got on top of things and my bad days got fewer. Also exercise, as impossible as it seems to even contemplate when your gripped by CF, made a big difference to me, as did spending more time outside, even just if it was sitting for half hour in fresh air. It’s all about trial and error I guess.

If you have CF or a condition that brings it on in bouts, I feel your pain. It’s horrid, and as amazing and wonderful as bed is, there are times you just want to be able to leave it without having a small breakdown. (I say this laying in bed fully clothed, in broad daylight, but its like -2 degrees outside so I’ll allow myself).

Happy energetic vibes everyone.

Help. Dr Internet is diagnosing me again.

  
I often think of hungry as an emotion. Like someone asks how you feel and you’re like: “I am hungry. Hungry is what I feel. Leave me alone.” It would be better if it wasn’t because let’s face it, enough emotions already thanks life. But I listen to hunger. It’s easy- I feel hungry, so I eat something, and then I stop hating on everyone and everything.

Everything else going on is not that easy. I miss the carefree days of ignoring my body and ploughing on through to another night out and getting some more chips and then going for a run because oops, better do something good. The joys of being 19.

Now I’ve got some other emotions and feelings to consider- paranoia, stress, exhaustion, obsession. The Internet has become my doctor and this is bad. It’s bad and I’m not alone.

I spend hours worrying about ‘symptoms’. I google things, look for things, I lay awake worrying about aches and pains and my internet search history is full of ‘symptoms of..,’. Wild, I know. The whole internet out there and I’m just at home in my mouse dressing gown wondering what deadly disease I must have because I had a headache earlier. It never ends. I do have a connective tissue disorder, so that’s partly to blame because I have a lot of symptoms, but even when things happen that are not related to that something pings in my head and I’m like OH GOD I THINK I MIGHT BE DYING???? And so off to Google I go.

This is not healthy. I jump on every little pain or niggle or grumble and google and diagnose myself with all manner of conditions which I definitely don’t have. I get totally freaked out and start asking my friends if they’ve ever experienced the same, then they say they don’t, BUT they do have something else. So then we talk about that. Then guess what? Maybe I have that too? 

The internet is amazing and I love it dearly. I love it for videos of people falling over, vines of Beyonce, hilarious one liners, satire, 24 hour news and for a job I really enjoy. But I hate what it does for my health. We 20 somethings who got the Internet when we were just emerging from childhood and used to plug it in on the landline are used to having the answers. We’re used to just looking it up online and we want everything immediately. It’s a blessing and a curse.

While it’s super useful in some respects of health and raises awareness and teaches us how to do vital things like check for cancers etc, my frame of mind is not impressed. 

I’m already unwell, yet there’s this tool on this thing I carry around everywhere in my hand (hiya iphone) and it’s making me paranoid and sad and stressed. It’s turning molehills into mountains and it’s seen me scorned by GPs and nurses. I realise I should stop googling and looking things up. I realise it’s that simple.

But it’s hard to give it up. I know I have friends who are the same as me. We over-analyse and we get way out of hand and we’re on whatsapp  like ‘babe I think I have cronhs’ and my God, it HAS got to stop.

Health is so important. It’s time to start being health aware and sensible in real life instead of relying on doctor Iphone to tell me I need to go to the hospital immediately. 

 

Living with chronic pain

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There’s no easy way to ease into a blog post about chronic pain, so instead of trying to do that, let’s just begin.

Chronic pain is awful. It affects people for all different reasons and it can vary from mild to severe, it can come in waves, be constant, flare up, be related to a known condition or happen for seemingly no reason at all. I have it and I am largely unimpressed and annoyed by it, but I have grown to be used to it.

I suffer with it related to a suspected connective tissue disorder- Ehlers Danlos syndrome. There’s no genetic test, so I can’t be sure, and I’m no longer ill enough for doctors to see me in regular clinics or monitor me. There aren’t enough specialists for that sort of attention, and that’s a frustrating part of having rare conditions, as any fellow sufferers will know.

Chronic pain doesn’t have to come from a rare condition though, it comes from lots that we are aware of like arthritis and endometriosis. You probably know of someone who puts up with chronic pain, but like many people who know me, you most likely aren’t aware. In a lot of cases, the pain becomes a part of life. It’s one of those things that happens, usually daily, and there’s nothing much to be done about it.

Whether you’re sitting at your desk at work, trying to get to sleep, driving a car, in the shower, dancing on a night out, the pain sneaks in and takes over. I’ve learned to carry on and ignore mine unless it’s severe and that isn’t an option, because it’s easier than trying to explain to someone that a body part hurts out of nowhere and you need a break. Or you need to go home. Or you need to sit down on the floor.

People don’t get it. They can’t relate to it if they have never felt it and that’s reasonable. You can’t truly communicate how it feels to be in pain everyday, or get across the chaotic fashion in which your body treats you. One moment, you’re laughing away or getting your head down with some work, the next your staring really hard at the floor waiting for this latest pang to pass.

sometimes it doesn’t pass. Sometimes the only thing you can do to cope is to retreat to a bed or sofa and reach of the painkillers. sometimes it doesn’t pass for days. Chronic flare ups are NOT a fun time. It can be lonely and quite isolating too, to put up with something that in many ways defines your day to day life, but that you keep mostly to yourself or the confines of a select few in case people think you’re making it up, exaggerating or just being a baby.

Aside from the negatives and the physical impact and the fact it can quite literally get in the way of living at times, anyone who deals with pain on the chronic scale is brave beyond measure and you’re not alone. It’s easy to feel alone, as you might not know anyone else who suffers with something similar, you might have very few people or no one at all that sympathises with you and makes exceptions, but there are others out there.

The online community for ‘spoonies’ is quite something. I highly suggest getting on twitter or joining Facebook groups if you feel you need to connect with other people like you. You might have seen this term flung around recently in relation to Selena Gomez, who recently made it public that she has lupus. The ‘spoon theory’ is essentially that every person has a certain amount of spoons per day and different activities take up different amounts. Once you run out, that’s it. You’re done. You are absolutely done. I used to run out of spoons completely on a regular basis but thankfully I’m going through a long, good period with my condition.

If you have chronic pain I feel for you immensely, and I hope you know you aren’t the only one dealing with this unwieldy, random, debilitating symptom. KEEP GOING. YOU CAN DO IT.