It’s never enough

I always feel like I’m not enough. Not good enough, not smart enough, not trying enough.

Sometimes it’s in the back of my mind other times, if something triggers this.

Someone doing something amazing whilst I feel I’m sitting there stagnant or going backwards.

Rejection upon rejection upon rejection.

Waiting for emails. Emails of yet more rejections or hopefully good news.

Scrolling down linkedin or legal insta to find everyone getting training contract offers when you have nothing.

Everyone else having confidence to start various initiatives and you not.

Because who would care? Who would help?

People say you don’t network in the right way.

You can’t maintain relationships with people because you pushed all your friends away in the second year of university when you had zero mental health.

You are just simply not enough.

I don’t know how much of this is my poor self esteem as a result of never feeling heard as a child. At school, by my family. A result of emotional neglect/abuse. Or how much of it is a result of being chronically ill and when your chronically ill society expects you to be extroadinary.

To reach goals that most people don’t reach and be an inspiration.

If you don’t your just lazy. A burden on everyone.

It doesn’t help that I genuinely want to reach said goals.

Personally I think it’s a combination of the two causing my feelings of never enough.

I already push myself so much to do things and to function and to live life as close to how I want it as possible that when I see other people meeting standards that I expect of myself I feel like I’m not enough. People say I should do more or atleast insinuate it but there is no way I can fit more in.

I need to try and climb as it’s the only exercise I can tolerate and being conditioned makes a massive difference to my pain levels. It also gives me life.

I’m leaving my job but up until said point I am having to drag myself through 8 hours a day. 8 hours where the pressure in my head feels unbearable, Where my vision will start to fade on sitting up and where the brain fog is so thick that I don’t really trust myself.

I’m doing law things alongside.

Moving home to try and take care of my health before I start my LPC.

I can’t fit more in.

I find it funny that we are expected to be inspiarations but if a healthy person got my symptoms for a week it’s okay for them to do the bare minimum.

Why is this? Why has society developed in this f*cked up abelist way? I know I’m not the only one who suffers because of it, so if you do to you are not alone and you are enough.

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.

May was a Mess but that’s okay

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I quite like doing these monthly reviews so I think I’ll continue them as much as possible.  But May was a not very fun month. Fun things happened but my body definitely took the sacrifice until I found the d-ribose and the adrenaline I’m in right now. Yes I’m aware harnessing the adrenaline isn’t good ME management advice but I do what I do.

The beginning of May actually feels like a decade away right now but I decided to commit to an ME awareness daily photo challenge on Instagram which I actually completed, like what? Everyone who knows me knows I get to about day 15 of these challenges and give up. But with a lot of pre-preparation and sometimes posting two or three days in one I managed. When I could dedicate the physical and cognitive energy to photo taking I really enjoyed expressing my creativity and posting different content. But I also liked  how I could go through a wealth of photos on facebook, google photos, my phone and post old content if I didn’t have the energy or muse. There is now a picture of 9 year old me in a tree on Instagram (Where else would I be?).

I also got to see my family again and I am loving being fed and my dog and my fingerboard and there being a tree I can climb in my nans back garden. It’s probably not safe as it’s probably taller than a bouldering wall (getting down was terrifying) but my brother climbs it all the time and I’m competitive. Yes even against a 14 year old because if he’s better than me at anything he endlessly rubs it in.  Also trees and doorframes are all I can climb right now so if I’m in the vicinity of a tree and feeling vaguely well enough I will.

But my health was not vibing in May. In all the ways.

I spent the month a really not fun gastro flare because my body was like “Hi your doing too much for me to have the energy to digest food.” The only reason I’ve kept weight on is because my family feed me and eat the typical unhealthy westernised diet so the calorie density has been higher, especially with my evening meal. I’m really hoping my stomach works this month because I’m done with the agonising all consuming nausea but also scared of gaining weight. I weigh the least I have since a bad gastro flare four years ago and I weirdly feel worse about my body than I did at Christmas when I was heavier. But such is life. I can’t do huge amounts about it when living with my family. If I wasn’t working I’d make separate dinners for myself more but I really don’t have spare energy to cook and wash up the cooking every day or walk to Tesco and back for fruit whenever. My nausea is something I really should see a doctor over as even though I can’t commit to one end of the country I could atleast get some anti-emetics. Over the counter and herbal remedies are of really limited effect right now and no I can’t concentrate on my job effectively if the all consuming nausea hits. But I also can’t concentrate if I’m hungry so I can’t really win.

My bladder also waged a bit of war on me, although that’s been going on since before lockdown I found it more noticeable when trying to work. I should really see a doctor about that actually as it’s been really painful over the last few months but COVID and not being committal over staying in one part of the country.  It’s also kind of scaring me because from my limited none medically trained knowledge it sounds like I’m having retention issues which is a common EDS comorbidity.

I still have an elbow injury even though that’s had a lot more rest (Should really do something about it) and my LCL is still injured even though when I got it checked out I was told a month. That was three months ago. I hate it when medical professionals underestimate injuries because of a high pain tolerance or maybe I just heal slowly because of my EDS. Everything else that got injured during the same heel hook is better now though!

Migraines, pressure in the back of my head, migraine like headaches that aren’t actual migraines and pain in the rest of my body has been a constant battle. Yes another thing I should consult the GP about but I have 99 problems and I don’t know which to prioritise.

I was finding myself on the floor multiple times a day, although that did reduce at the end of the month by starting D-ribose and getting back on another supplement that I think I probably was on at some point but stopped because I couldn’t afford. It’s very weird living in an abelist family who don’t even believe that is a thing, collapsing multiple times a day but never in their sight or rarely because adrenaline is a wonderful thing. It’s honestly even more hilarious when your younger brother has issues with you not emptying the dishwasher and your dad gets in on the “Why can you do X but not Y?”

Especially when you can’t explain because they don’t let you get a word in and lets face it no one will ever understand ME until they have ME. No one will ever understand that yes I can do this thing but this thing makes me very dizzy and I have to work after lunch so no I can’t do this thing right now. I can do this thing but it’s unsafe for me as I often can’t feel my feet and am dizzy so if I am able to walk down the stairs carrying a hoover down and then hoovering the mess I made after exerting a lot of energy before now is something I need help with.

I did the hoovering. Not the carrying.

I feel like able bodied people also don’t understand that we’re allowed to have fun. And I’m not blaming my brother for his “Why can you climb a tree but not empty the dishwasher.”  But it’s something I’ve come across my other people who are old enough to educate themselves and allow themselves to be educated.

May also ended in a bit of a mental health crisis. I won’t go into details of why or what but it was terrifying, especially as I had been doing really well. Honestly if I had records of my recent anxiety and depression questionnaires I could prove it. (I have to do them before each therapy session.) But seriously being worse mentally, even if only for two days than you have been for two years is terrifying.

So May was not great but hopefully June will be better. On one of the last days of the Month I was able to walk for 10 minutes without too much PEM. Still some PEM but less.

I may go down to one post a week in June. It’s certainly not felt right to make two posts this week with everything going on. I’ve been sharing resources and info #blacklivesmatter related over on my IG stories @spoonielivingfree which will likely continue but writing a blog post on the matter when I can only come from my own white privileged view isn’t something that’s felt right. We need to share voices from black people without putting pressure on them to educate us. I may however write some criminal justice/sentencing pieces if I can find the energy although I’m not sure whether they’ll be posted here or somewhere else.

That was a tangent. But yeah, I’d like to do two posts if I can but it’s not something I’ll pressure myself to do!

How was May for you?

 

 

 

 

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.

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?

 

 

 

 

My Mental Health is Suffering in Lockdown

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And we are in week I don’t even know of lockdown. But it’s fair to say the lack of meaningful human interaction is starting to take it’s toll. I’m an introvert but even us introverts will start to crack if left alone with our thoughts for too long. I’m lucky I have access to social media and people to talk to virtually but I’m definitely starting to feel more low than usual.

My sleep schedule is non existent

I’ve started having anorexic thoughts again. Sometimes some really intense ones that have been hard to not give into.

My brain fog is worse and my ability to concentrate also worse.

There are things other people can do, which would help like they’re daily outdoor exercise which I’m not yet really well enough to do. Daily. (Although getting there)

I feel this social experiment COVID-19 has played on us leads to two questions being asked.

Will we have the mental health services and resources to help everyone after this?

Is there going to be more awareness of the fact that poor mental health in people with chronic illness is oftentimes secondary as a result of the isolation it causes?

I really hope so!

 

 

 

On Sleep and Chronic Illness

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Sleep. What an interesting and topical topic. Seeing as sleep is essential for the functioning of the immune system and many people are struggling to sleep right now because of anxiety associated with the pandemic, I figured I should write about sleep and how to help with sleep as someone with chronic illness.

I feel like us spoonies struggle with sleep in two different ways. We either sleep too much (hypersomnia) or just cannot sleep (insomnia). Personally I struggle to stick to a normal 9-5 working sleeping pattern due to pain and nausea and because my ME seems to like the hours from 9pm onwards more and hates early morning rising. Many times I’ve gone into work on 4 hours sleep or less. I can easily sleep 10+ hours a night and have naps throughout the day when I’m in a flare. So I guess I go both ways…

Sleep is essential and not having enough of it can make it that much harder to get through the day or make us hyper tired and delerious and then crash later. So if your in the camp that is struggling to get to sleep at night or struggling to get to sleep early enough because your body clock is just against that 9-5 life then here’s a few tips.

  1. Have a wind down routine Although some people can just switch off and yeah I can sometimes, most people can’t. Be it having a hot bath, doing some yoga, reading a book, watching some TV or a combination of the above a wind down routine is essential for a good nights sleep.
  2.  Try to go to bed and get up at the same time every day. If you work I’m sure you’ll relate to not sleeping great on a Sunday night because you slept in over the weekend. Going to bed and getting up at the same time can have a demonstrable impact on your sleep.
  3. Sleep tea/night tea can help. I drink the Pukka brand of night tea.
  4. Don’t stress about not being able to get to sleep. For some it helps to get up and do something and for others it doesn’t.
  5. If you can,  spend your day somewhere other than your bed, and ideally your bedroom.
  6.  If you have night meds to take that may help you sleep take them in good time. This does two things, helps you fall asleep on time and means you feel less drowsy in the morning.
  7. I listen to podcasts/audio books to go to sleep, I find this helps occupy my brain whilst I’m trying to sleep.
  8. Putting lavender oil on your pillowcase is known to help with sleep
  9.  Try to limit your caffeine intake, especially past early afternoon!
  10. Finally, if you struggle with sleep because of pain try putting pillows under in-between different body parts (For example in-between your legs)

I hope this has proven helpful, there are many other tips and tricks floating around but I wanted to keep it to 10. What helps you sleep?

 

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.