I Am More Than My Medical Diagnoses

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I’m a medical record number.

I’m a hospital ID band.

I’m a name on a chart.

I’m a hospital room occupant.

I’m an extensive medical history.

I’m a long list of medications.

With an even longer list of symptoms.

I’m a patient.

But I’m more than just another patient — I’m so much more.

My name is Jessica, and yes I happen to have epilepsy, nutcracker syndrome, pelvic congestion syndrome, anxiety, and undiagnosed chronic pain, but I’m more than my diagnoses.

Do you want to know who I really am?

I’m a passionate, caring, empathic individual.

I love helping people which is why I’m a nurse (and one of the reasons I started blogging, to hopefully connect with others).

I’m open-minded and understanding and a bit irritable at times — you can ask my family and my boyfriend, they might tell you it’s true.

I’m not perfect; I don’t ever claim to be. But every day I try to be better and I try my best to not let my diagnoses define who I am.

How do you define yourself?

Follow this journey at Nurse’s Notions

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The Difference Between 'Rest' and 'Bad' Days for My Chronic Illness

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Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill.

You can have days when you feel on top of the world and then the very next day you can struggle to even get out of bed. No one would look at me straight after a one hour exercise class and think that I’d spent the previous day in bed, or would spend the following two days barely able to leave the house. Sometimes, thought, that’s exactly how it is.

Now that’s not to say that an hour-long exercise class always results in two days in bed, because most of the time it doesn’t. But what it does mean is that I have to be really careful about what I do, what I plan, and what I worry about.

A lot of people may not fully understand the difference between a rest day and a bad day – and believe me, it took me a long time to realize there was a difference. When I was first ill, I always saw bad days as rest days and actually, that’s not the case.

So in this post, I am going to go over the differences between the two days and for anyone who, like me, didn’t realize there was a difference. Hopefully this post will help you to manage your illness just a little bit better. This post is also for any family and friends who struggle to understand why someone they know with a chronic illness misses things even when they aren’t ill, and why some days they can wake up and they are suddenly very ill.

On rest days these days, I’m not ill.

I have to have these periodically to make sure I’m not overdoing it and I don’t end up having a bad day. In other words, I take rest days to prevent the bad days.

Rest days are part of managing the illness. If I don’t have them, I risk relapsing.

I plan these into my week or month. They aren’t always a full day, but I try and have at least a one-third of every day to rest, and at least one rest day a week, but two or three if possible.

Although I’m not restricted, I tend to stay in the house for these but I don’t necessarily stay in bed.

I can still do small tasks, such as having a shower, getting dressed, and blogging – as long as it isn’t anything heavy-duty like intense exercise or going to work.

I can move about easily enough, there are no restrictions.

I’m usually in a pretty good mood and often feel quite productive on these days. I use them to catch up on TV, do some extra blogging or take time to read a book.

When I start to feel like my body is giving up on me, I can take a couple of rest days to help prevent a bad day. If I ignore these signs or triggers, it results in a bad day.

On bad days days, I am very ill.

These happen once I have overdone it.

Bad days are a result of not managing my illness properly and I wake up feeling drained and ill.

Bad days are part of the “crash.” They occur if I haven’t taken enough rest days. Usually on these days I am housebound, if not bed bound.

I can’t do much more than lie in bed, sleep, and watch TV. Although, I wouldn’t call staring blindly at the TV watching it.

I can usually make it to the bathroom. It may take a while but I do get there eventually.

Sometimes I can make it downstairs to the sofa and stay there for the day.

Bad days can vary. Sometimes I’m ill in the morning and by three or four in the afternoon, I start to pick up again. Other times I’m wiped out for three or four days at a time.

I can go a few weeks without having a bad day if I’ve managed my illness properly. If I haven’t, then I can easily have bad days every other day.

I don’t plan these into my week or month, but I can feel them coming on when I’ve been doing too much.

I really hope these points have helped you out. I know from experience, as soon as I realized the difference between the two, managing my illness became a whole lot easier. It is such an important factor to establish when you have a chronic illness, otherwise you can start to feel like your whole life is just one big relapse.

Follow this journey on Live With Me.

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Why My Chronic Illnesses Make My Body Feel Like a Puzzle

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My body is a puzzle.

A giant jigsaw puzzle made up of many thousands of tiny pieces – organs, joints, hormones, blood, nerves, muscles, genes, microorganisms and more. No one else has the same puzzle pieces as me.

My body is also puzzling me. Pieces don’t seem to be working together the way they are supposed to. Some of them have lost function over time while others suddenly stopped following their job descriptions properly.

I’ve always been happy to see a doctor when I’ve been unwell but have also dabbled with complimentary therapies for decades. I’ve tried acupuncture and homeopathic treatments for hay fever. I accept the principals of reflexology and the concept of “chi,” “prana,” or energy lines running through the body. I also attended weekly yoga classes for 15 years, which benefitted me far more than I realized at the time. It was only several years later that I realized how much my health had declined since I stopped.

I guess I had never fully explored the rationales behind some of these approaches to health – or, if I did, I never acted on them. I did instinctively lean towards an integrative approach to my health, though. I just didn’t know it by that name.

Possibly part of the reason I didn’t turn to these therapies as my first source of treatment is that I am very wary of the “snake oil salesmen“’out to make a quick buck selling “natural” therapies that have no reliable evidence to back them up.

I am also wary of anyone who claims they can “cure” health issues instantly or who says that theirs is the only way. The trouble is, many of these opportunists have become pros at making themselves and their products appear legitimate so they can sometimes be hard to spot.

So, as pieces of my body started misbehaving, I saw a doctor.

In my late teens, it was for hay fever. Over the next 20 years, I went for help with irregular periods that slowly worsened. (I was later diagnosed with endometriosis.) I occasionally had allergic reactions and bowel issues too but I did not connect them with my diet at that stage.

The year 2007 was a turning point for my health – and not in a good way. I had the stress of moving house. My hay fever was out of control and I frequently had sudden and severe blood noses. I also travelled overseas and was covered in mosquito bites on that trip. Thankfully, I didn’t develop any scary diseases, but it did mean I was on antihistamines almost the whole year.

I saw a new doctor who started me on immunotherapy for hay fever and dust mites. This worked like a vaccine. Each week for 12 weeks, he gave me a sub-cutaneous injection made up of the allergens that were causing me trouble. The difference was amazing. I repeated the process for two more years just before spring and I have not touched an antihistamine since.

Looking back, I can see all these factors put my immune system into turmoil but I didn’t see the connections at the time. Around November that year, my joints started to hurt and swell randomly. Back to my GP who instantly recognized it as rheumatoid arthritis which was confirmed by blood tests.

Then the drugs started coming. I took different ones to suppress my immune system, reduce the inflammation and control the pain. They weren’t enough to stem the rampage my immune system was on, though. I have tried several additional drugs since, including four biologics. Some worked a little, or worked but then stopped. Some just didn’t work at all, but I still had to try them for several months to “wait and see.

From there, I started to break apart. I’ve had a rare fungal infection in my lung that was removed surgically, my endometriosis was finally diagnosed and removed, I was tired all the time and had trouble concentrating at work, my ankles had puffed up with excess fluid and, just for fun, I damaged a tendon in my foot.

Even then, I wasn’t finished. From late 2013 until early 2015 I was in free-fall. I was diagnosed with fibromyalgia, then shingles and type 2 diabetes (on the same day), rapidly-growing cataracts in both eyes and a blood clot in my lung probably caused by taking the pill. The diabetes and cataracts were both caused by my long-term use of steroids. Each new issue added a new drug to my daily arsenal and a new specialist to see.

I have no doubt that my doctors all had my best interests at heart and that most of the treatments they offered did help. However, each issue was mostly dealt with in isolation without looking for the underlying cause. I was also reluctant to make changes to things like my diet while I was waiting to see if the medications worked or not. I wanted to keep some things constant, otherwise, I would have no idea what was helping.

I have asked lots of questions along the way and have actively been involved in all decisions, but not all my questions were answered to my satisfaction.

Questions like: Why is my hair falling out? Why do I still struggle with fatigue? Why do I sweat so heavily from my face and scalp? Why do I have huge bags under my eyes?

With every question, I would be told, “I don’t know. Your test results are okay. There is no treatment for that. You should ask your specialist.”

After years of pulling the pieces of my body apart and examining them in isolation, I now feel like some pieces have gone missing or been overlooked. I yearn to be whole again so I’m now going back to the “whole health” approaches I’ve tried in the past for some answers.

I’ve already started to make some dietary changes such as regulating my sugar intake and increasing the variety of healthy food I eat. I am slowly cutting down on some medications. I’m going back to doing yoga regularly. I’ve even sought out a local integrated health practitioner who just happens to be one of the doctors I’ve seen in the past.

I’ve always been pro-active in my health decisions. The problem for me is that I never fully realized the extent of my choices. I simply trusted that the conventional medical system would work for me. It did to an extent, but it has also left some massive voids that need to be filled before I can put my puzzle back together and be truly healthy.

I now have to push my boundaries further and finally trust what I have always known. That doctors alone can’t heal me. Only I can heal me. I have an unknown path ahead but I plan to follow my instincts and walk that path with confidence.

Originally shared on CreakyJoints.

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Dear Chronic Illness: You Will Not Break Me

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Dear chronic illness,

I’m writing you a letter about our past and our future. I know you can’t actually read this as you are not a person, but I need to write to you anyway. Please listen and understand where I’m coming from.

You took something from me. You stole it right out of my arms and don’t plan on giving it back. You ran off laughing and giddy as you did it. You took my life – my healthy, pain-free life. You were a smooth criminal. You started off lurking around, learning about my habits, watching my every move, planning your attack. You got to know me. Then one day you grasped me by the shoulders and faintly whispered in my ear, “Run. I’m coming for you.”

I didn’t listen at first. I ignored you and the footprints you were leaving. I continued on with my daily life for quite some time. Then, boom! You hit me from behind with a boulder when I wasn’t looking. Your game improved and you made sure to steal as much as possible. This time around you left me something in exchange for my health: pain. Intense, horrible, overbearing pain. But no, that didn’t quench your thirst. You came back multiple times, each time taking a little more with you. After some time you thought you stole everything from me. But I have news for you: you didn’t break me.

You made me a better person. Thanks to you I have discovered strength I never knew I had. You unleashed a warrior inside me. I fight for my life on the daily, and you have made me strong enough to do that. You have made me develop a sense of empathy for everything and everyone. You helped me find my dream. Thank you. I know you wanted to break me, I know this was not a part of your plan. You don’t deserve credit, but I’m going to give it to you anyway. Thank you for helping me and changing me. You aren’t going to break me no matter how hard you try. I am strong, I am fearless and I will survive you.

Sincerely,

Your little warrior, Marissa.

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What It Was Like Losing My Job Because of My Illness

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A week after starting an exciting new job, I fell sick with the flu. Less than five months later, I would find myself being fired for excessive absence.

I couldn’t believe I’d be offered the job. I got hired the same day, only a few hours after my interview. I’d officially deferred from university in the beginning of September and had been jobless for the first month and a half of the new academic year. The depression was suffocating. I struggled to lose the weight I gained during my stressful year of study. I spent my time feeling sorry for myself, hating myself, thinking I’d made a big mistake. This job was about to change things. I was about to do something valuable with my time.

Less than a week into my new position, I fell ill with a bad case of the flu. I’m asthmatic – I blamed myself for not getting my vaccination that autumn. I turned to social media to make my distress known. I spoke of my severe body aches, migraines, and fever. I talked about my inability to leave my bed or eat the food my mother prepared for me. I talked about wanting to sleep but being unable to due to the coughs that consumed me every time I would lay down. I talked about how I couldn’t walk but instead crawled to the bathroom, thinking I was dying.

After a week or so I found myself improving, eating in small amounts and feeling myself again. This, however, was only the beginning.

I found symptoms coming and going; severe nausea and flu-like symptoms. I thought to myself, “There’s no way I’m getting the flu again am I? I just had it!” Then, three days before Christmas, on my way to a family member’s birthday dinner with my mother, I was hit with sudden pain. Pain that took me off my feet and caused me to collapse. Pain that started in my right knee and, by the end of the night, had spread to every joint in my body. Every. Single. One. It was reminiscent of previous bouts of pain I’d pushed to the back of my mind; occurrences I had assumed were isolated. I remembered staying home from sixth form because I couldn’t walk. I remembered the anxiety of missing classes and falling behind. I remembered the severity of that pain. This was when I realized things were worse than I’d previously thought.

Over the next few months, I bounced from referral to referral, playing the waiting game, as suspicions of conditions arose from my GP. I waited, patiently. I pushed the pain to the back of my mind as I left the house at 7:15 a.m. each morning. I pushed the pain to the back of my mind as I worked my 10-hour shift, returning home at 8:30 p.m. with just enough time to eat a late dinner and wind down before going to bed. I became more and more ill, having more flare days, calling in sick more and more often as time passed. But damn, did I try.

A few weeks into my harrowing work routine, I had my most severe flare up yet. I called in sick, imagining that I would improve within a few days. Two weeks of staying home from work and the depression was kicking in again. I was lucky I didn’t live alone, but this was easily the loneliest I’d ever felt. Most of my friends were at university, having daily adventures and making friends. I drearily tapped through Snapchat updates from my colleagues, socializing and joking in the break room. I wondered if they’d noticed I wasn’t there. I travelled back in time to the periods of loneliness I’d felt months prior and it felt all too familiar. Another two weeks later; four weeks since I stopped coming into work; I got my doctor’s note. At 11:30 a.m., I was prescribed fluoxetine. At 3:30 p.m., I was dismissed from my job.

My measured collection soon cracked and crumbled into a full blown anxiety attack in front of my manager, complete with depersonalization and total loss of sight. I felt my being fall out of my body and my vision turn black. I blindly fumbled for my inhaler and took a dose. And another. And another. I was a breathless pile of tears and saliva and mucus. I was ashamed of the sounds coming out of me but I had no control over them. “How did this happen?” I asked myself. “How did the girl who only had two days off throughout her whole time in primary school become the person fired for being unreliable?” This really put things into perspective, making me realize just how serious my health issues had become. This, to me, was total loss of control. I didn’t say anything after that. The girl who always had something to say suddenly became speechless.

I felt cheated, I felt wronged, and I felt as though life was unfair, but I didn’t appeal my dismissal. This is why.

Staying at my job was punishing myself with something I thought was my duty. I thought it was my duty to work through my sickness and pain. I thought it was my duty to say “Yep, I’m fine!” with a half smile when people asked how I was. I thought it was my duty to stay at my job and downplay just how ill I was. I stayed at my job for over a month longer than I should have, working through pain I should not have been working through, only taking days off when it was physically impossible to go in. I pushed myself to an unjustifiable limit until I couldn’t come in for a month straight. I pushed myself until the thought of working made me sick. I pushed myself until a five-minute walk from my house to the local shops was too much. I put off looking after myself for so long that I was unable to look after myself. The stress of my dismissal alone struck my body with severe fatigue and pain, leaving me unable to walk and, for the rest of the day, eat. That in itself tells you enough.

My management did me a favor. They didn’t mean to do that when they did, but they did. They did what I should have done for myself a month earlier. I should have put my health first but I didn’t, and I’m grateful they forced me to. Maybe I’ll get a handle on my condition and will be able to manage it – I hope, pray, and believe I will – but as it stands, I’m not in a place to keep up such level of work. If losing my job was the shock I needed to realize I was neglecting my health, then perhaps it was a good thing.

I always say I turn negative experiences into positive action. Though this isn’t the life I pictured for myself at 19, I spend every day preparing myself for what may happen next, and turning negative experiences into positive actions, as difficult as it can be. Positivity is productive but denial is not.

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When My Health Insurance Said I Had to Try a Different Medication

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I recently switched to a different form of health insurance and all the medicine that I have been on for years has to get pre-approval before they let me continue taking it. They decide this mostly based on how expensive the meds are. Recently I ran out of Lyrica, which is one medicine that I never want anyone to mess with because it helps me so much. I had to go through horrible withdrawal symptoms including headaches, intense night sweats and a low grade fever for a few days while I waited for them to decide whether or not I can keep taking my much-needed medicine.

Finally, when they came to a decision they said I need to try something else and that I can no longer take Lyrica, which I have taking for more than five years. I burst into tears when I was told this. Lyrica means I can function without too much pain, it means I can get off the couch and do things, it means I can be productive. I was devastated by this news. I can’t go back to how I was before I started taking it.

It isn’t that I am not willing to try a new medicine, it is that I am terrified that it might not work when I know for a fact that Lyrica does work for me. I am tired of having to constantly jump through hoops just so I can feel a tiny bit better. I am tired of having to be told that I have to stop taking or doing something that is genuinely helping me. That is a very cruel move.
It is beyond frustrating when things like this happen. It feels like I am locked in a cell, looking at the key to freedom, but never able to reach it because someone keeps moving it further and further away, making sure that it is still in my line of sight just to taunt me.

I wish people who make these decisions could live for one day in the shoes of someone with a painful, chronic illness so they could understand just how devastating these forceful changes are. Why fix what’s not broken? Why make me go through the hassle of changing medicines, a situation that could be very hard and perhaps painful for me?

I am hoping this works out for the best, but I have been down roads like this many times before. I know hope does not guarantee that this is actually going to help. Behind the hope is a grim realization that this might not work for me and I will be forced to jump through many more hoops only for that little bit of much needed relief. It is cruel to take away something that is actually helping someone. Maybe this will work out for the best, only time will tell.

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