Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.

The month of both excitement and tears

June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.

June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).

I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.

I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.

My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).

My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.

There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.

Passing out when trying to sit up after a laying down workout isn’t fun!

So that was June! How was the month for you?

My experience on the Legal Cheek Virtual Vacation Scheme — handoeslaw

I spent the week participating in Legal Cheeks Virtual Vacation Scheme alongside 3000 other aspiring Lawyers in the UK and worldwide and as many of these schemes are going on this summer, in both law and other industries, I thought I would share my experience. The scheme was run on a platform called Hopin. I’ve […]

via My experience on the Legal Cheek Virtual Vacation Scheme — handoeslaw

The problem with “real recovery”

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And we’re back with an eating disorder recovery related post and that is the issue of real recovery. I’ve been in the community on YouTube and the gram for many many years now and yes as a young influential gen z I did #realrecovery in my posts. But now I’m older and wiser and believe the message of real recovery is slightly problematic.

Back in the day it was associated with a minnie maud style, 3000+ calories a day, no exercise recovery. Yes that is probably the most ideal recovery when it comes to putting weight on fast in recovery from anorexia and maybe even for your mental state. Now I find it associated with going “all in”.

But other than the fact that “going all in” isn’t appropriate for all eating disorders or all eating disorder patients as it may cause refeeding syndrome or increasing urges to binge the term real recovery is problematic as it insinuates to many eating disorder patients that there recovery is only worth it if they’re never giving into thoughts, eating to their cravings and hunger ques and not using compensatory behaviours. Considering how perfectionistic anorexia sufferers in particular are this is even more problematic as they are likely to want the perfect recovery and the eating disorder may convince them that it’s all or nothing.

If you give into a behaviour your a failure. Your recovery isn’t real and so why should you bother.

The reality is every recovery is real recovery. Even if you do slip, you do act on thoughts and use behaviours. It’s still recovery, as long as you recognise what your doing and make a real effort to try and change it.

Of course the ideal of recovery is to never use behaviours, but that’s not realistic.

Recovery has ups and downs and often a lifelong process. Often when you recover from an eating disorder the thoughts will become less and less but they’ll always be there in the back of your mind and you’ll always have to keep check on them.

Sometimes you’ll be doing great, sometimes you slip.

Slipping or not making as much progress as other people in the community doesn’t mean your recovery is less real!

Recovery is not linear, not the same for everyone and does not have to be all positive!

Dealing with rejection

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I don’t think I’ve already covered this, or if I have I’ve not dedicated an entire post to it. Which is strange considering just how much rejection I have faced.

At the end of April I was rejected from my dream job, although I was put on the reserve list so maybe if we keep our fingers and toes crossed it will come to me. Or not and something else will happen that was so meant to be.

And very unlike me, I dealt with it okay. Maybe I’ve experienced so much rejection that I’m immune to it.

I was able to appreciate that getting as far in the recruitment process as I did was an achievement in itself. Many people who get the job are a lot more qualified than me, or a lot more privileged and from better universities.

I was able to appreciate that rejection isn’t the end of the world. It doesn’t mean I’m not enough or I didn’t try hard enough.

It’s just life.

Life makes no sense sometimes especially when your dreams seem to just not be coming together. But I truly believe that one day it will all make sense. l

God has a plan.

He just doesn’t make us aware of that plan.

You are sick enough for help: Mental Health Awareness week

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It’s the end of mental health awareness week and honestly we shouldn’t need one but there we go, we still do. Although we have come a long way there is still a significant amount of stigma out there.

Today I want to talk about, well write about how we all have mental health and there is never a point where you are not sick enough for help. Be that therapy, counselling or medication or even just that little bit of extra support from family, friends and collegues.

Mental health is just like physical health. Sometimes it can be good, sometimes it can be bad, sometimes it can be somewhere inbetween and just like physical health we shouldn’t ignore it if we start to feel it going because if we do ignore it, it will likely get worse and have a knock on effect on other aspects of our life. If it gets worse, it’s harder to then get back under control.

Just like physical pain, it’s better to take action when the pains a 3/10 because once it gets out of control more and more needs to be done.

Ignoring your mental health and sacrificing it above all else in life isn’t a badge of honour, it isn’t a way to show how brilliant you are or how hard you try. Your not being pathetic if you take time out, get therapy, take medication that’s okay. You are valid. You are worthy. You are not wasting the time of healthcare professionals. Even if you live in the UK and are reliant on the NHS. If you think you are having enough of an issue with your mental health that simple self care isn’t helping and only you know that you are worthy of help. See your GP, self refer to therapy.

I know living in the UK it can be hard, especially as a teenager because CAHMS often only help you in a timely manner if your on your death bed and even then…. I won’t waste words ranting about CAHMS though.

Many trusts now offer self referral to therapy, although limited in their use for people like me with currently mild/moderate anxiety and depression this can be really helpful  I have a lot more anxiety than depression though! I’ve been really quite anxious these past few days just because my family don’t understand ME but the second I try to explain they start spewing abelist language on me. That’s an anxiety that’s hard to overcome, when the people who are meant to support you most don’t see nor understand your illness but it’s kind of your fault because have you really tried but the issue is your too anxious to try.

That was a tangent…

Although there’s still waiting lists it’s not the 6 months to many years that can be found with other forms of mental health treatment on the NHS.

You are sick enough, you are worthy and you are deserving. Remember it’s better to prevent these issues arising at all, through rest, be selfish once in a while. Self care is important, you shouldn’t burn yourself out trying to be everything for everyone.

The problem with Illness Bingos

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These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

Well that was a quick month

April seemed to have gone by in a flash. It also seems to have been very sunny, not good for the migraines but good for the mental health when I’ve been able to get out.

Trust the UK to get it’s act together the year we’re in lockdown.

I’ve got to confess I’ve spent the majority of the month sleeping. My ME has taken a huge hit from months of overexerting and a possible COVID-19 infection which I still can’t fight off. I still have a cough. It seems to come in a cycle now though rather than being completely unrelenting. I’ll stop coughing for a couple of days then the cough will return. Under the UK guidance this means I don’t need to self isolate as I’d never actually stopped coughing so it’s not a new continuous cough and I did the initial self isolation when it started. However I am regularly checking my temperature and if I get a fever again I will, as that could be sign of reinfection. I’m also taking essential shopping to mean essential shopping. Not “oh I just want a bar of chocolate”. I have witnessed such interpretations of essential and trying to combine trips where reasonable in terms of my ME to try and limit contact to the outside world just in case.

It’s so much fun not knowing whether immunity is a thing to the novel virus right?

I have spent the month largely sofa bound but doing my best not to decondition anymore. There has been lots of bad migraines, lots of bad pain days, lots of fatigue and brain fog.

My activities have been somewhat limited but I think a lack of energy has stopped me from going crazy during this lockdown. I normally get very cabin feverish very quickly which is why I had never mastered the art of pacing. In the past I’d feel a little better and then I’d leave the house and end up bedbound again.

Now I’m feeling a little better and yes leaving the house when I need to but also thinking of things I can do in the house which are less likely to cause payback. I’m finally learning how to pace. I’m noticing early warning signs of a crash and trying to slow down straight away. Instead of pushing myself when every inch of my body is saying no. I’m still not perfect at it, there are still peaks and troughs in my ME. I’ve not perfected the art of pacing. But by remembering that I will actually have to work full time again soon, despite not being well enough I’ve allowed myself to slow down enough to slowly get out of this flare.

I’ve become addicted to tiktok, follow me @spoonielivingfree if you want some quality content. I’ve refound my love of writing. And not just my blog but I’m kind of working on a secret project and wanted to write fanfiction again. (The actual fanfiction writing has been non-existent tbh)

I’ve been able to dedicate time and energy to reading. Mainly YA fiction because it’s accessible to my foggy brain. I’ve been really enjoying getting lost in fiction again. It’s not really something I can do without PEM after work as my job is so cognitive.

Lots of chocolate has been eaten which isn’t great for my waistline but weight gain is okay!

It’s been a hard month and a socially distanced month and I really really miss my family and I am so ready to go home, although I don’t know when as when the office opens albeit in a socially distanced way I’ll have to be in some of the time. Hopefully not all as some would give me leeway to go home without the guilt of annual leave. I’m kind of contemplating illicitly going home myself once I get a work laptop, if I get a work laptop.  Providing I have enough medication and the office isn’t opening imminently to my knowledge. Technically your allowed to move between households and if I went ideally it’d be for two weeks to limit what I may or may not be spreading.

But it’s not by any means be a bad month. Not every month that you get paid for not working a day. And in this age of adult responsibility and bills it’s not every month you get to make decisions to look after your health instead of running yourself into the ground.

Hilariously despite this entire month of time I’ve still not applied for PIP cause anxiety. Even tho I actually need to… I’m just not good at advocating for myself and I know I would be denied it because I don’t look sick…  and a lot of people with ME are.

I am the queen of procrastination over anything that causes anxiety.

How has April been for you?

 

 

 

 

It’s okay to gain weight in isolation

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I’ve seen many a meme about weight gain in isolation. Which although funny and I relate really isn’t okay. Why?

Because these memes make it seem as though weight gain is something undesirable during this time and can be triggering for people recovering from eating disorders such as myself. We’re already in an unprecedented situation which is quite stressful for many people, this in itself can make it much harder for people in recovery from eating disorders to maintain that recovery. Memes, jokes and TikToks about the weight we’re all going to gain in this time simply isn’t helpful and may be enough to tip someone over the edge.

So I thought I’d pop in here and say that it is okay to gain weight during this time. Partly to reassure myself but also to reassure others.

We are going through a collective trauma. It’s only natural to eat more. Eat more “junk food” I hate that term, all food is good food in moderation. And we may be unable to eat as much fresh food as we would like. So yes, when combined with a reduced activity level due to gyms being closed and a lack of motivation/energy because we’re going through a collective trauma we may gain weight during this time.

But that’s okay. We are not defined by our weight. When was the last time you chose your friends based on their weight?

Hopefully never. We are worth so much more than our outward appearance.

From a health perspective yes being obese can give rise to health complications. But our bodies all have a set point, and you are unlikely to go much above that during this time. Furthermore, any weight you have gained is likely to naturally come off once this is all over.

From a health perspective, giving into restrictive eating disorder tendencies is going to be more damaging. Studies have consistently shown that being underweight is more damaging than being slightly overweight and coping mechanisms such as purging can actually be really dangerous and affect your electrolyte levels as well as risk damaging your esophegous and teeth.

It is okay to gain weight. It is okay to stick to your meal plan even if you think your less active and don’t need it. It is okay to eat what you want. There is nothing wrong with that chocolate, those biscuits or those crisps.

All food is good food and you deserve to eat it. Be kind to yourself. Just getting through the day is enough.

 

Mental health in the workplace

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Maybe this isn’t the best time for this blog considering the majority of the world is either not working or working from home but I feel like the same points still stand. And if anything not working/working from home can bring up more anxiety, and I predict even more so when the time comes to go back into the office.

A workplace environment can bring up a lot of anxiety, and resulting depression. It may also lead to eating disorder tendencies coming back due to anxieties about eating in front of people, not having sufficient breaks or not being able to eat the same food.

I know my mental health is often associated around the workplace. Be it thinking no one likes me or thinking I’m not good enough. I’ve also found myself getting anxious over how often I get up from my desk in the office environment. Especially in the office I’m in right now, where my job does not require me to get up to go to the printer on a regular basis.

I find as a perfectionist, the pressure gives me a lot of anxiety. The pressure to be perfect. Which is hard when I have chronic illnesses that make being perfect impossible.

If you find your job is negatively impacting your mental health remember it’s okay. Especially if transitioning to a new role. Take time for self care, take time for hobbies.

Try and find the positives.

Many workplaces also now have mental health first aiders if you find yourself in a crisis at work.

Remember to open up to others. Don’t bottle it up. You’ll likely be surprised to find that other people have been through similar things. We all have mental health and although we won’t all experience a clinically diagnosable mental illness in our lifetime, everyone will experience certain lows and a level of anxiety. Also sharing a problem really helps, bottling it up only makes it worse. If you have no one to share with 7Cupsoftea is a good website for this!

Don’t stress about what you can’t control. I know many people have been and are still worried about their job security during this pandemic. You can’t control that. So try not let it eat you away. By all means come up with a plan but don’t catastrophise.

It’s okay to get help. By this I mean professional help. If you feel you would benefit from therapy or medication then that’s okay. You do you. Do whatever helps you. (Providing it is safe, non-destructive and isn’t going to harm you or anyone else)

Finally, don’t beat yourself up. Your not weak. Your not pathetic. Your not melodramatic. Your human. Beating yourself up is only going to make your mental health worse.

Stay safe everyone. Look after your physical and mental wellbeing and I’ll see you in my next blog.