How I'm Balancing School With My Chronic Health Conditions

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I have always been very fortunate that my school has been very supportive of my copious amounts of hospital appointments. Every week on a Monday morning, I would go up to the sixth form office and hand in my letters for that week, informing them of what days I was missing at what time, which hospital I was going to and what treatment I was going to have. It got to a point where it seemed like my teacher and mum were pen pals writing to each other each week.

Luckily, the majority of my appointments have been on an outpatient basis so I have not had to miss massive chunks; however, it can be exhausting traveling to and from different appointments. I think my record was 14 different appointments in one week! The time where I did have an inpatient stay at Great Ormond Street Hospital, it was the week before my AS Levels. To say the least, I was very stressed. Missing school, going into the hospital and then exams the week after! But I was able to cope through the support of many people.

I think that having support from other people is probably one of the most important things for keeping up with school when you are in the hospital so much. First, my teachers made sure they sent me all the work I missed and were available to email to answer any questions. Secondly, the hospital staff always made sure I had time to revise in my room and one of the student nurses helped explain some math. Lastly, and most important to me, were my friends and family. I video-called my friends during the evenings and they kept me up to date with the latest gossip from school. I will never forget the time when I was speaking to my friend and had to get a blood test. The nurse said I could carry on speaking to him but then I passed out…gave him a little bit of a fright!

 

Usually, I really enjoy school. For me, keeping up with work has always been a distraction to everything else that is going on. I have never wanted any of my health issues to prevent me from doing well. I don’t see why I should ever be limited to the things I am able to achieve just because I experience symptoms that other people my age don’t have.  Having this attitude has meant I have been able to get into my dream degree at one of the best universities in the UK. Although some young people have symptoms that are not considered normal, I believe it is important we still get to experience things other kids our age get to do, even if it is just attending a hospital school or going to the hospital shop with some friends because unfortunately, this is what some children are limited to.

I have always found it hard explaining to my friends why I have yet again missed the group presentation, or why I wasn’t able to go to someone’s birthday party, or why I miss lots of lessons. As time went on they became more understanding, so if you are in this position, give it time. They are your friends – they want to support you as much as you can, they just might not know how. So give them a hint! Don’t be ashamed to ask for more help. My school is really understanding and have given me rest breaks in exams, allowed me to leave lessons if I need a break and my head of year meets with me regularly to check my progress both inside and outside of school. It’s hard being different from everyone else and having to monitor my health, but I got used to it very quickly and it always shocks me how understanding people are. There are also some perks, such as using the lift at school!

Obviously, school is important, but your health is even more important and should be your main focus because you will be able to have increased success in school with better health. Also remember that while school is important, so is a social life, so even keeping up with your friends might make you feel better.

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Thinkstock photo via AntonioGuillem.

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35 All-Too-Relatable Daily Thoughts of a Spoonie

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Here are some of the common thoughts I have regarding having an autoimmune disease:

1. “Do I have to get up?”

2. “My bones hurt. How can bones feel pain?”

3. “Omneprazol before food…”

4. “I don’t feel like breakfast…”

5. “No Facebook, I don’t want to see photos of me before the prednisone.”

6. “I used to hate those photos…look at my face now.”

7. “You’d think after a while I wouldn’t choke while swallowing multiple pills at a time…”

8. “Urgh, I want a nap.”

9. “Argh, nearly forgot SPF.”

10. “Should I bother with foundation, or rock the butterfly rash?”

11. “Do I have my keys?”

12. “What else do I need?”

13. “My right hip hurts again – is this normal now?”

14. “Did I take my meds?!”

15. “Oh, yes I did, they tasted horrible.”

16. “Can I eat lunch yet?”

 

17. *Taking notes* “Did that really just take me five attempts to spell…?”

18. “Is this brain fog, or am I just becoming less smart?”

19. “Oh my god, what is that person’s name…”

20. “So proud of making a healthy lunch.”

21. “I want coffee…”

22. “It’s been an hour since lunch, why am I hungry again?!”

23. “Need coffee…”

24. “Knee joints are hurting. I need to stretch.”

25. “I deserve a snack.”

26. “Want crisps. Can’t have crisps.”

27. “Need to remember to bring snacks with me. Carrots. Protein balls.”

28. “Need to make protein balls…”

29. “My stomach has become a bottomless pit.”

30. “What shall I make for dinner?”

31. “Can it just be avocado on toast? I’m sleepy…”

32. “Need to drink more water.”

33. “Might actually fall asleep by 11:00…”

34. “Argh, nearly forgot my night meds.”

35. “Why do I feel awake now?”

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Thinkstock photo via g-stockstudio.


35 All-Too-Relatable Daily Thoughts of a Spoonie
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When Chronic Pain Makes It Difficult to Talk to People

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I’m generally an amiable person and I love a good conversation. Before I got sick a few years ago, I was definitely a chatterbox and could speak on almost any topic, ranging from literature to politics. I loved talking and I still do in the best of circumstances. Unfortunately, the “best of circumstances” don’t happen very often.

It’s very hard for someone who does not experience chronic pain or illness to envisage what it’s like to be too exhausted to talk to someone. People often assume that being in physical pain has no bearing on whether or not you can talk to someone on the phone, or online, or in person. A lot of times when I bail out of commitments, it’s as much due to physical pain or an exacerbation as it is because just don’t have the energy to talk.

 

Unfortunately, this doesn’t just extend to acquaintances or regular friends, but also to family, best friends and significant others. Most perceive my lack of communication to be aloofness or a sign we’re “drifting apart” or I dislike their company. None of that is true in even the slightest. It’s just that when you’ve spent your whole day battling your own body along with trying to be civil to people you can’t avoid, like family, you are too worn down and exhausted emotionally to partake in conversation, no matter how light-hearted.

Sometimes, we don’t even manage that civility if we’re in the grips of a
particularly nasty flare. Many people probably think (or even sometimes say), “But it’s me, how can you find it difficult to talk to me?” or “Don’t worry, we won’t talk about anything you don’t want to, you can just sit there and relax.” You don’t get it. I cannot talk or respond at all. Even the effort of registering your voice or your words is too much for me sometimes. Even keeping track of the conversation can be tough. Even giving the appropriate monosyllabic answers can be too much work. And if I’m not up to it, you will feel even worse believing my lack of patience or apparent lack of interest stems from you. They don’t.

Imagine being awake for two days straight and then dying to close your eyes, but there’s someone next to you trying to make conversation. Can you imagine even stringing together a coherent sentence? Or understand what they’re saying, even if their conversation is “light-hearted” or they’re your closest friends? No. That is how it feels, just replace the sleepiness with fatigue, pain and a gaggle of other symptoms.

So if you’re one of the people who feels slighted by my lack of enthusiasm to talk to you, I assure you my illness makes sure I have a lack of enthusiasm for pretty much everything, not just talking. I’m usually irate and bone-weary and too emotionally and physically wrung-out to force myself to talk to someone if I don’t feel like it. Please respect and understand that without being offended or thinking it has anything to do with you. It’s entirely me. I have so few choices left in my life as my illness has made most of them for me that I’m sure you can understand if I take advantage of the few choices I can still make. Be assured that if I can, I will talk to you and go out with you and do everything a normal person does (albeit with some limitations).

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Thinkstock photo via monkeybusinessimages.

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It's OK to Forgive Yourselves, My Fellow Chronic Illness Friends

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Forgive yourself.

Forgive the things you could not get to today, because the pain was too intense.

Give yourself the grace you’d give a loved one who was struggling to move, exhaustion winning against the will to do more.

Forgive the mess. Forgive the cancelled plans. You are only human. With a body that needs care right now. You can only do so much. Those who love you will understand. If they don’t, forgive them, for they still need to grow.

Be unhappy at your limits but don’t be angry at yourself. That is unfair to your soul. To the glowing essence of who you are. Love yourself enough to be OK with what you cannot do today.

 

I understand. I know these feelings well. I know the crushing disappointment of staying home when you had plans. I know the shame of having a messy house and feeling like it shouldn’t get this bad. I know the sense of loss. I know the pain that squeezes you from the inside out. That takes your breath away. That takes everything away in those moments of agony. Where all you know is the pain. I know the fear. The mind-numbing fear, when the body is completely out of control and running off a racetrack at 100 mph.

I also know the strength it takes to still be fighting. To still be living. To still be here today. Sharing love with those around you. Supporting each other with words of understanding and encouragement.

Remember to support yourself in the same way.

I know despite all of the hurt we have, we made it to today, with hearts larger than they were yesterday and empathy stronger than it’s ever been.

We can share our hearts with loved ones and gift smiles that flash through the darkness.

Hope can carry us and others through a bad night, and the quiet peacefulness that comes with the rosy glow of each sunrise can carry us through the day. The gentle yet fierce light that keeps us going even when we thought we were too tired to fight.

We’ve done something pretty amazing today, even if we didn’t do very much. We continued on.

Acknowledge this. Breathe it in. Be proud, not ashamed.

Chronic illness and pain may make our bodies weak, but our minds are beautiful and powerful and can make a difference to this world. Why? Because we have lived a life of complexity. We know the simple joys of being able to do simple things. You don’t get through life with chronic illness without growing, learning, appreciating and changing.

To all who are struggling, be gentle with your body and kind to your soul.

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Thinkstock photo via OGri.

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The Challenges of Living With Memory Issues

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This world is tough to navigate for someone with memory issues. When friends and family don’t understand what’s going on, it can cause relationship issues. Forget a child’s ballgame or recital? The child gets upset and thinks you didn’t care enough to go. The other parent may also get upset and think you’re being neglectful or selfish. When this happens, not only are you, the one with the condition, dealing with your own guilt over missing something important to your child, but now you’re having to deal with your family’s disappointment and accusations as well. Forget a birthday or anniversary? Forget something your spouse told you yesterday? If he or she reacts to this in anger and frustration, possibly making accusations, your self-esteem can plummet.

Work performance can suffer when someone is experiencing memory issues. They might make mistakes on the job which can lead to them getting fired. Though you are not required by law to disclose any diagnosis to your employer, some openness and honesty about your situation goes a long way. If coworkers know what’s going on with you, they can help pick up the slack. Your Human Resources department should also be made aware of any condition that may interfere with your performance at work. If they are aware that something is going on, it is possible you could be transferred to a position that is easier to handle, be given a lighter workload or have your hours reduced. Your job can work with you to an extent as long as they’re aware of what’s going on, although it’s not reasonable to expect them to always cover for you or excuse your mistakes. If you have an intermittent illness that affects your memory or performance, you can utilize FMLA (Family Medical Leave Act) in some cases to take time off until your normal functioning returns. Plan ahead for if/when the time comes that you can no longer function at work and need to look into applying for disability.

 

Forgetting a doctor’s appointment can get you written down as a “no show” and there may be a charge for not giving them 24 hours’ notice. You can reschedule, but it may be weeks before your next appointment rolls around. That’s a long time to wait when you’re having issues affecting your daily life that need to be seen to. Even worse with specialists – it can often be months before you can get in to see them. If you miss too many appointments, they can “fire” you as a patient for noncompliance. They may label you as noncompliant for other reasons as well, such as forgetting to take your medication as prescribed. Maybe you accidentally take it too often because you forgot you already took it earlier. Maybe you forget to take it at all because you can’t remember if you already did or not. Maybe you forget to refill your prescriptions on time so you’re not able to take them for a few days until you can get to the pharmacy. When you give vague answers to your medical providers, it raises a red flag in their mind that something is off. You could find yourself mistakenly labeled as noncompliant, attention-seeking, drug-seeking, etc. It is extremely important for you to be as open and honest with your doctor as you can about your memory issues. You want them on your side, not working against you because of a misinterpretation of your actions.

Find a support group! There are others out there who are going through the same thing as you, or something similar. It helps to talk to people who understand what you’re going through. You may not get validation and support from those closest to you, but you can get it from people in similar situations. They may also have some tips and tricks for you that helped them deal with their symptoms.

It can sometimes be a sign of something else going on with your body. Memory loss doesn’t usually happen on its own, especially in younger people. Elderly dementia happens, of course, but most of the time there’s something else going on, the memory issues simply a symptom of a larger problem. There are many mental health and physical health issues that can lead to brain fog, memory loss and decrease in cognitive function, either permanently or intermittently. Getting officially diagnosed and receiving proper treatment can greatly improve all symptoms of your illness, not just the memory issues. Unfortunately, many individuals go for years without a diagnosis, so be your own advocate and don’t give up on getting to the bottom of your health issues. Enlist someone you trust who can help you remember your appointments, write down your symptoms and go to appointments with you. Forgetting to tell the doctor some of your symptoms makes it that much harder for him or her to come to a proper diagnosis.

Be prepared at all times. Wear a medical alert bracelet or carry a card in your purse or wallet. Keep a list of all medications and be sure that list is current. If you have intermittent memory loss, or intermittent difficulty with speech, this should be written down and kept in a place that emergency personnel can easily find. If you’re unable to tell them what your allergies are, what medications you’re on or what your medical diagnosis is, there is a risk of emergency personnel giving you something harmful. Therefore, it is important for them to be able to look at your bracelet or a card in your wallet to get this information in case you’re unable to tell them. Keep your emergency contacts listed and up to date as well.

Plan for long-term care before you need it. Don’t leave that decision up to your loved ones to make. Too many people wait until it’s too late to make any plans. Choose a person you trust to make decisions for you and designate them your Power of Attorney for when the time comes that you need someone else to be your decision-maker. Tell them while you still are of sound mind what your wishes are so they can carry them out on your behalf. Your family may not want to talk about things like this, so you may have to be the one to bring it up. Their emotional burden will be eased if they have your help making plans while you still are able.

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Thinkstock photo via Mandryna.

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My Phone Isn't Stealing My Sleep – My Chronic Condition Is

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Everyone who has missed a night of sleep has probably been told that their phone is to blame, and some of the time that is the case. But for some people, sleep just never comes. If you’re anything like me, getting anything less than eight hours of sleep will make you incredibly irritable. So please, when I snap, don’t take it personally. I’m probably in too much pain to socialize, and frankly, I’m too tired for your judgement. Before you jump to conclusions, let me explain.

I’ve recently found myself getting less than four hours of sleep a night and every day I have people lecturing me on drinking too much coffee, or on spending the night texting. This is incredibly frustrating because odds are, I’m drinking coffee because I didn’t sleep and I need it to help me function at a basic layer, and on the occasion that I am online at 3 in the morning, it’s not because I’m just avoiding sleep. It’s because I’ve spent hours with my eyes shut and I’ve given up trying, or I feel like my joints are on fire and that ants are eating away at them. How could any one sleep through that?

So please, trust me when I say I couldn’t sleep. I’d much rather be asleep than lying awake. When I say I didn’t sleep, many assume, “She’s 17. She was probably just talking to boys all night.” I wasn’t. It’s a Saturday night and I was in bed by 8. I should be out at the cinema, at or party or just being a kid. But pain stole that from me. Pain stole my sleep, my happiness and my life.

Pain is even ruining my friendships. I got into an argument with my friend yesterday because according to him, I’m not trying to sleep. If I really wanted to sleep, I would’ve been able to. This hurts me and I just wanted to cry. I am trying, and for some one to tell me I caused this to myself – it was like a punch in the face. He told me if I didn’t drink so much coffee, I’d be able to sleep. But, I only drink two cups a day and never after 3 p.m. He then told me it was because I was on my phone. It eventually turned into him telling me that the reason I was in pain was because I hadn’t slept and that the pain was psychosomatic, caused by sleep deprivation. This doesn’t sound like such a bad argument, but I get this kind of thing everyday. I was never told that my chronic pain would cause all my friends to become medical experts with the right to cause me even more grief. Apparently me not taking their advice is belittling because they’re “just trying to help.” Their “help” gets to me more and more. Can people not understand that I don’t want this?

I want a full day in school, I want to be able to hold a meal down, to go shopping in town. I want my freedom and I want the old me back. So please, when someone with a chronic illness says they couldn’t sleep, couldn’t come into school or couldn’t hang out – please just take their word for it. Don’t make them feel like a bad person for being ill because we didn’t choose this.

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Thinkstock Image By: KatarzynaBialasiewicz

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