Category: Migraine

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Tips to Make Sure Your Doctors Hear You (It’s Important For Your Health)

It’s no secret that women’s medical issues have historically been minimized and dismissed by healthcare professionals worldwide. In ancient Greece, doctors described how the uterus is like a living breathing creature that wreaks havoc on our systems and so I would expect Dr. Hippocrates to tell me that my illness is hysteria. I expect that from medical care from centuries ago.  

We’ve come a long way since then, so I wouldn’t expect an ER doctor to say that in the 21st century. 

Welcome To Medical Care in the 21st century of the Middle Ages

But yet, that’s exactly what happened. I went in with high blood pressure, chest pain, and fatigue, and I was told there was nothing wrong with me, and to go home. That was the first of many times that doctors dismissed me, ignored my complaints, or told me to relax. (Yes, it was, in fact, my doctor and not Frankie who said, “RELAX”). 

4 Tips to Make Sure your Doctors Hear You

I had to deal with:

  • The doctor who told me that my migraines were here to stay, so I should just take some Excedrin and get used to agonizing pain being the rest of my life. 
  • The urologist who told me that despite the fact that I can feel my bladder pretty much 24/7 that there was nothing wrong with me, and he couldn’t help me. 
  • And the primary care doc who treated me like I was a checklist to complete and hand back to the insurance adjustors. 

But that was the first time I fully understood what it meant. It meant that it didn’t matter that I was in pain, or sick, or struggling – they just wanted me out of there. I remember the feeling of being half-naked in a hospital bed, with wires attached to my chest.

4 Tips to Make Sure your Doctors Hear You

Vulnerable and afraid, now I had a new feeling. Shame. I felt ashamed for wasting their time. No. that wasn’t it. I felt ashamed because they made me feel like I was wasting their time. 

In my replays of that scene, I’m assertive, and I make my case. I floor him with my eloquence calling him out on his misogyny. I tell him he’s dismissing me, and I ask for a second opinion. 

In real life, I burst into tears. 

Making My Voice Heard

I didn’t know what to do, but I was going to make my voice heard. Unfortunately, as it turns out, no one wanted to listen. Calls to their patient advocacy office went unanswered, and no one other than the billing department even seemed to remember or care that I was a patient, a customer of their establishment.  I tried to advocate for myself – but no one was listening. We need to make ourselves a priority

My experience isn’t unique. A quick search on Google reveals that this is an ongoing problem. John Oliver did a piece on the disparity of treatment between men and women by healthcare professionals that sounds like our medical system is stuck in the dark ages. And unfortunately, there’s plenty of evidence in the laws being passed that women’s health simply isn’t a priority. And it won’t be unless we make it one. 

Prioritizing

The other day I was driving my husband to the airport and my chest started to hurt. I suffer from chronic pain from an undiagnosed mystery condition (otherwise known as IDS – Ignored by Doctor Syndrome), so I tend to simply ignore it. It’ll go away in a few days. 6 years later I’m still saying that.

I realized that as much as I hate to admit it, part of the problem is me. I rely on humour to cope, so I spend a lot of time minimizing my own symptoms and pain, historically even with my doctors. I was always putting everyone else ahead of myself because I’d lived with the pain for so long, why prioritize it now.

I bring it up at my checkups, but it’s routinely ignored. It occurred to me that if Alex was in pain, he’d go to the doctor, he’d be seen, and he’d come out of there with a solution. He simply wouldn’t entertain any other option.

Why wasn’t I doing the same thing?

I realized that as much as I hate to admit it, part of the problem is me. I rely on humour to cope, so I spend a lot of time minimizing my own symptoms and pain, historically even with my doctors. I was always putting everyone else ahead of myself because I’d lived with the pain for so long, why prioritize it now. 

The question I should have been asking is why not prioritize it now? My family relies on me to take care of myself to be around for years to come, and part of that means taking an interest in my own healthcare. I’m done ignoring my health, and I’m done letting others ignore it too. For the first time in my life, I am going to prioritize myself. 

Because that’s what we need. As chronically ill patients, we need to put ourselves first so that we’re around to take care of the people we love. I resolved to set up a system to make sure I get listened to and get the healthcare I deserve. 

Take Yourself Seriously

The first thing that we as women need to do to make sure we’re taken seriously is to take ourselves seriously. If you tend to downplay your pain or put on a brave face by minimizing your pain or your symptoms, even the best of doctors is going to have trouble diagnosing you.

Pay attention to your body and be mindful of your symptoms. Don’t ignore them simply because you’ve had them for a long time. If you’ve been in pain for a while and don’t know why, that’s something to take note of. 

Write It Down

Tips to Make Sure your Doctors Hear You (And Why It's Important)

I always think of things I need to discuss with my doctor in the most random places and times. In an escape room, while I’m doing dishes, or right before bed. I always say I’ll remember but I never do. Write down your issues when you think of them, and don’t dismiss them when you’re in the doctor’s office just because you aren’t feeling that way at that moment. Articulate the feeling in your smartphone or your journal or notebook so you have it to refer to. 

Do Your Homework

This one is the most time consuming but will make a difference. Research your doctors on Yelp, Angie’s List or Healthgrades. Look for people with 3+ star reviews and read through them to learn why people rated the way they did. Google the doctor to see if there are any articles or blog posts written about them that raise red flags. You can also check with your friends and family to see if they have someone that they recommend. 

This part may not work well for everyone, but if you aren’t happy with your experience, try another doctor. Years ago, I went to see 5 different physicians before I found the doctor I was with for 6 years, and I would have stayed with if he hadn’t relocated.  

Enlist A Friend

If you’re worried about your ability to remain calm and put together or advocate for yourself, bring a friend or a family member you trust with you. 

I’ve been in pain as long as I can remember, and I’ve been ignored for years, and sometimes I get tired of fighting and feeling like its an uphill battle. I remembered though that as long as I have a voice, and I do, I can speak up for myself and others, and I can be heard. As long as I have a choice, I can find healthcare professionals to take me seriously. I don’t have to stay where I am, I can always make a different choice. 

Have you found any techniques that work particularly well for you to get taken seriously by healthcare professionals? 

About The Author

Minessa Konecky is a social media strategist and business coach who has lived with an assortment of chronic illnesses since her teens including chronic back pain, migraine, general anxiety, and depression. Instead of a unicorn, she’s opted for a dragon as her unique snowflake avatar because for her they symbolize wisdom and strength that help her triumph over her restrictions, but also let her take a nap when she needs one. She enjoys bingewatching post-apocalyptic TV shows, meditation, playing with her 3 mini huskies and has an encyclopedic knowledge of pointless 80s and 90s media trivia. 

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My Experience with Silent Migraines (Migraine Awareness Week)

Migraines can be a very painful condition. For some people, the sharp pain may not subside for hours. However, different people can have different migraine symptoms. Some people can even have migraines with little pain. These are called silent migraines. Even though they don’t cause much, if any, pain, their symptoms can still be debilitating.

My Experience with Silent Migraines

The words “painless” and “migraine” may seem like words that don’t belong in the same sentence, but silent migraines are very real.

Some people experience vision and sensory issues before their migraines occur. These symptoms are called an “aura”. Aura symptoms can include blurry vision, light sensitivity, vision loss, seeing zigzags or squiggly lines, numbness, tingling, weakness, confusion, difficulty speaking, dizziness, diarrhea, vomiting, and abdominal pain.

These symptoms can last anywhere from a few minutes to an hour; sometimes even longer, though this isn’t common with silent migraines.

My Symptoms

When I first started experiencing the symptoms of my silent migraines in 2016 I was very worried. I would first experience the “aura”, my eyes would struggle to focus. It would then progress within a few minutes to my eyes feeling like they were flickering uncontrollably.

Then my eyes would roll into the back of my head. Sometimes they roll back for half a second and then it ends, other times they stay back for longer. At first, I thought I was having some form of fit or seizure.

Then once my eyes and vision settle, I end up with a headache that can last anywhere from half an hour to a few hours (it’s normally closer to a few hours), depending on the duration/intensity of my aura symptoms. So while I experience some pain with my migraines, the pain isn’t at a level that one would expect when they’re experiencing the “common” migraine.

Silent Migraines - Migraine Awareness Week

I often feel very tired and disorientated after experiencing a migraine, and sometimes it can take hours for my vision to return fully back to normal. Often the rest of my day after a migraine is a right-off.

During my most severe migraines, my eyes have rolled back into my head for at least 10 seconds, during which I was fully aware but couldn’t see or stop what was happening. Once it was over, I would be left with a splitting headache. This, however, has only happened a few times over the last few years. Most of the time it is more uncomfortable than actually painful.

My Migraine Triggers

Over time most people get an idea as to what triggers their migraines. Migraines can be a response to the brain struggling to adjust to sensory stimulation (such as loud noises or bright lights) or changes in body chemistry. They can even be related to food.

There are hundreds of possible migraine triggers, including strong smells, noises, bright lights, caffeinated drinks, alcohol, stress, hunger, exercise, pain, eye strain, neck problems, sinus problems, too much sleep, too little sleep, and menstruation and other hormonal changes. Some medications can also trigger migraines.

My migraines can be triggered by flashing lights, lots of stress, and me neglecting to wear my glasses while reading and writing (I learned that lesson the hard way). During a good week, I may only experience a migraine once a week, which I am very grateful for.

However, during a bad week, for example, a week during which I’m very stressed, I can have them every day, sometimes multiple times a day.

Diagnosis and Treatment

As soon as you start experiencing aura symptoms you should consult your doctor. Silent migraines can mimic other serious conditions such as strokes and meningitis, so you shouldn’t self-diagnose a silent migraine in case something more sinister is going on.

At first, I went to see an optometrist because I thought something was wrong with my eyes. Besides my previous vision problems, they didn’t see anything wrong. I then went to see my G.P. about it. After some investigation, he told me I was experiencing silent migraines.

This was a term I had never heard before, so I was quite confused. He recommended I keep a migraine diary and prescribed me some migraine medication.

Silent Migraines - Migraine Awareness Week

There isn’t a cure for migraines, but the symptoms can be controlled with medication. Treatment for silent migraines is the same as treatment for “normal” migraines.

Since my migraines aren’t that frequent, I don’t require much treatment besides my everyday pain killers and occasional Rizamelt (prescribed by my doctor) during my bad weeks. However, if your migraines are impacting your everyday life, you should consider seeking treatment.

My main form of “treatment” is doing my best to prevent the migraines from occurring in the first place. Of course, I can’t prevent every single migraine from occurring, but avoiding my triggers as much as possible certainly helps.

Preventing Migraines

In order to prevent migraines, you need to determine your triggers. A great way to do this is by keeping a migraine diary, in which you document each migraine you have, the date, the time, what you were doing before the migraine hit, and what you had consumed before the migraine (including medication).

In time you should be able to determine what acts as a trigger towards your migraines and then avoid it. Some triggers you may not be able to avoid, however, there may be a few that you can.

Due to silent migraines not being accompanied with pain, many people mistake them for symptoms of eyestrain or stress. As a result, the symptoms of silent migraines are often under-reported and under managed.

It is important that you consult your doctor if you are experiencing “aura” like symptoms. That way you can receive a diagnosis and treatment for your symptoms.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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The Impossibility of ‘Get Well Soon’ – Vaive’s Spoonie Story

One of the hardest things about living with chronic illness(es) is that it’s exactly that: chronic. You know it’s never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life. 

Everything Changes

Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include: 

  • Fibromyalgia
  • Bronchiectasis 
  • Chronic migraines 
  • Long QT Syndrome, SVT (Supraventricular Tachycardia), Incomplete RBBB (Right Bundle Branch Block) 
  • Functional GI Disorders and a stomach hiatus hernia
  • Cervical spondylosis, protruding discs, scoliosis
  • Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms. 

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic

Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with ‘complex care/health needs’. This makes life a little harder, as my doctors don’t really communicate much with each other and I end up having to point out that I can’t have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when I’m particularly struggling with one thing and am tempted to just go ‘oh well I’ll risk the heart attack and take these just to be in less pain’! 

Dancing Through Life 

When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia). 

When I initially stopped dancing, I truly believed that in a couple of years time I’d get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesn’t have back pain these days? When I was at drama school, the pain just wouldn’t go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didn’t feel too bothered by this) and my job working on the London 2012 Olympics ceremonies. 

In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. I’m really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and I’m so glad I did that while my body was still capable. 

I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle,

The Winner Takes It All

After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog. 

That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldn’t put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force. 

My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health

Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didn’t help me. Having money didn’t make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me ‘I’m sure you’ll feel a bit better when you’ve got some rest’ – but I neither believed them nor had the time to rest. I knew my body didn’t have a ‘get well’ mode anymore, so I didn’t stop. 

Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain. 

Me and the Sky 

In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought I’d do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible. 

Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldn’t do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself. 

It’s strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often I’ve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than I’d like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now. 

Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to ‘do it all’ – and yet it’s far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet I’m fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, it’s unlikely I’d be doing this job. 

Mama, I’m A Big Girl Now 

We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, it’s an adult age, whether I like it or not. 

I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I don’t have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice. 

I spend a lot of time at my parents' house - despite the rent I pay for my own apartment

Going to my parents’ house, while a long drive from work, means there is dinner for me at the end of the day where I’d be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when I’m too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though. 

Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that I’ll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I can’t do these things for myself, but it’s important to accept that in order to live independently I will need support with some aspects – and that’s okay. 

Who Lives, Who Dies, Who Tells Your Story

I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether it’s making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldn’t do anything on Christmas Day. 

My little circle of close friends have known me for twelve years now, so they’ve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew I’d struggle. It also means when I have a low energy day, I don’t waste it on forcing myself to walk around somewhere and then paying for it big time later. It’s life-changing. But they also know I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing. 

I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing.

I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I don’t know these people personally, it gives me a further sense of extended community support. I’m not alone in this. 

‘Get well soon’ may be an impossibility, and that’s not the easiest concept – no matter how often we say that it’s fine. Part of me will always miss the ‘old me’ who could do everything that I no longer can – but I also love the ‘new me’ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for. 

The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didn’t explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day! 

Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether it’s the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, I’m not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because I’ve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems. 

About The Author

Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.

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Cataract Surgery (My Experience & Recovery)

Before It became apparent that I needed cataract surgery in 2009,  I believed that it was only the elderly who developed cataracts. Although the statistics do show that it is mainly people over a certain age are susceptible to developing cataracts they can occur in someone younger due to pre– existing factors.

According to the National Eye Institute, half of all Americans will have experienced a cataract or had replacement surgery.  August is Cataract Awareness Month, and today I am here to share my story of cataracts and cataract surgery. 

What Is A Cataract & Who Is At Risk? 

Cataracts develop on the lens of the eye which is a clear layer behind the pupil and iris. Light is filtered through the lens to the retina which then sends a signal to the brain to form the image of what is being seen.   The lens consists mostly of water and protein, over time the protein can begin to bunch together, eventually increasing in size which in turn affects the vision.  

Cataracts develop on the lens of the eye which is a clear layer behind the pupil and iris

There are several different types of cataracts:-

Secondary cataract. Cataracts can form after surgery for other eye problems, such as glaucoma. Cataracts also can develop in people who have other health problems, such as diabetes. Cataracts are sometimes linked to steroid use.

Traumatic cataract. Cataracts can develop after an eye injury, sometimes years later.

Congenital cataract. Some babies are born with cataracts or develop them in childhood, often in both eyes. These cataracts may be so small that they do not affect vision. If they do, the lenses may need to be removed.

Radiation cataract. Cataracts can develop after exposure to some types of radiation

National Eye Institute

Symptoms Of Cataracts

The symptoms or signs of cataracts aren’t only cloudy or blurred vision.  More frequent prescription changes can be a sign of a cataract forming. A halo effect when looking at light or light becoming too bright is a common symptom. Double vision, as well as colour appearing more faded than normal and poor night time vision are other signs of cataracts

My Cataract Diagnosis Was Out Of The Blue 

In April of 2009, I experienced the worst pain I could have ever imagined. I honestly thought I was going to die. After receiving a misdiagnosis of migraine, we eventually found out that it was in fact angle-closure glaucoma which caused me to be hospitalised to attempt to reduce the pressure in my eye.

I had countless eye drops and IV drips over the course of a few weeks. After 2 weeks of hospital appointments every other day the ophthalmologist in charge of my case decided I required surgery on my right eye.  

During one of the many examinations, I was advised that I had a cataract in the eye where the glaucoma was, my vision being poor in that eye to begin with, which meant I wasn’t aware of any changes in my vision. 

I was also informed that the beginnings of another cataract were apparent in my left eye. Bear in mind at the time I was 30 years old! I thought I was too young to have cataracts. However, it seems that I was experiencing them at a young age because of the visual impairment I was born with.

During one of the many examinations I was advised that I had a cataract

Due to my surgery being primarily for glaucoma treatment I was put under general anesthesia, whereas normally cataract surgery is carried out under local anesthesia.  Because of the short notice of the surgery being decided we were hanging around the hospital all day until a theatre became available. I was nervous but thankfully my partner was able to stay with me until I was taken to the theatre which was almost 10pm.  

The following morning, I woke up a little disoriented and groggy.   My eye felt tender and odd. My Consultant came to check on me and the stitches in my eye.  It was decided then that due to a cataract being present in the other eye that we would try Laser treatment to make holes in the eye, which in theory would slow down the development of vision issues, ultimately meaning I wouldn’t require more surgery.  

Not All Plans Work Out

Some point over the next six months to a year, it became clear that the laser treatment didn’t work, we tried another course of the treatment, which I’m not going to lie. I hated!!  That too didn’t work and I began to notice a slight blurring of vision as well as a halo of light.  

Surgery for my left eye was planned for January 2010.  Thankfully my consultant decided that it would be best for me to go under general anesthesia again.  He explained his decision as my being too young to have to remember the process of the surgery.   

After The Surgery And The Road To Recovery

Generally, the recovery for cataract surgery is quick. With the procedure being carried out in day surgery, there’s no need to be admitted overnight. Because I was under general anesthesia I was kept in the hospital for a few hours with a lovely eye patch and plastic shield that I had to wear at night in case I scratched my eye in my sleep. 

I don’t remember if I had to take any drops after the surgery but I do remember that it was several weeks before I was checked for new glasses!  It can normally take 6 weeks for the eye to heal properly which was the reason my ophthalmologist consultant wanted to wait until I got a vision check and new glasses. 

After The Surgery And The Road To Recovery

A few weeks ended up being a few months without glasses which meant that I was unable to work. This in turn led to me being let go from my job, on the basis of absence as the October following the original Glaucoma diagnosis is when my fibromyalgia symptoms began to appear. Thankfully I was able to finally get a new prescription and new glasses. I found another job and life seemed to return to normal.

Future Problems

In theory, the cataract replacement lens should last me for the rest of my life. There is a possibility of me developing a secondary cataract which is where the new lens’s position can become cloudy. If this were to happen I would receive more laser treatment. 

I receive yearly check-ups to make sure that the pressure of my eyes is normal and that there are no changes to my eye heath due to the Glaucoma and my preexisting eye condition. 

If you noticed any changes in your vision it is important to get your vision checked as soon as possible! Sadly there is no guaranteed way to prevent cataracts developing, however wearing sunglasses that protect eyes from harmful UV rays is a good place to start.

About The Author

Nicola Ogston is a blogger at nicolajogston.com She writes about chronic illness, disability and parenting.  She lives in central Scotland with her husband, son and dog Alba. As well as blogging Nicola volunteers as website coordinator for The UnChargeables..

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My Life With Migraine and Strategies to Help Cope

migraines, coping strategies

It’s “just a headache”, right? How could something that millions and millions of people get every day have such a huge impact on my daily life and ability to function? Well, it’s not “just a headache”. It’s a migraine and it has the ability to turn my world upside down and make it nearly impossible to do even simple everyday tasks. When I have a migraine, it completely stops me in my tracks.

Through the Tunnel, I Saw the Light

I started getting migraines about ten years ago, although at the time, I had no idea that was what I was experiencing. I was still working a corporate job at the time and started having tunnel vision seemingly out of nowhere as I was working at my computer. I could see things in the middle or right in front of my face, but the surrounding areas were dark. I must not have looked right either, as my coworker asked me if I was okay. I literally thought I was going blind.

My boss sent me to the doctor to try and determine what was happening. I explained what I was feeling and the visual disturbance I experienced to the doctor, and was told I was experiencing tunnel vision. The doctor explained to my that this can be a common occurrence prior to a migraine. This was surprising to me as I had never had a migraine before. Sure enough, a few days later, I got my first migraine.

Identifying My Triggers

When I first started getting migraines, they were no where near as severe and debilitating as they are now. Through the years, I have been trying to figure out my triggers, or what may be the cause of my migraines, but have been generally unsuccessful. Common triggers can be anything from smells to foods to sounds, stress, and even medications. I knew if I figured out what was causing my migraines, I might be able to prevent future attacks.

About four years ago, I was able to determine that eggs are a trigger for me. I completely eliminated eggs from my diet and was successful in avoiding having a migraine for about a year and a half. I was so excited to finally be free of the pain and other symptoms that would take over my life for days at a time. Much to my chagrin however, my migraines returned earlier this year.

migraine triggers

The Flare of Flares!

I had travelled abroad earlier this year to facilitate Unchargeables Meet-Ups. The stress of traveling triggered a flare of my autoimmune conditions and, I believe, also triggered the return of my migraines. That was about five months ago and my body is still trying to completely recover. Stress can exacerbate many chronic health issues. Although I’m not currently experiencing acute active stress, as I did when I was stranded, I have chronic stress in my life, which definitely impacts my overall health.

I am currently experiencing my second major migraine flare of the year. My last flare lasted about nine days. Hopefully, this one won’t last quite as long. This is the second time this year that I have a migraine.

migraine, brain, head, neck, nerves, flare

My Migraine’s Split Personality

I’ve noticed my body had two ways it tends to cope with migraine flares. The first way is to just sleep it off. I’ll be constantly exhausted and basically sleep until it’s over. I actually prefer that. While I’m obviously not productive while I’m sleeping, that’s the worst of it. When I wake up, the migraine is gone.

The other way my body responds is to do the exact opposite. Unfortunately, that’s how my body is responding to my current migraine. I can not sleep and I’m exhausted. I also can not really do anything else. I just have to lay in a dark and quiet room. I am unable to look at a screen (so no computer or TV), and cannot even talk most of the time. At most, I may have short periods of time when I can tolerate a phone call or talk to my daughter or boyfriend, but I just need to have silence most of the day. I can’t even walk my dog. It’s pure misery!

woman with migraine

During these migraines, I’m also extremely sensitive to outside stimuli. Lights, sounds, and smells can all make my symptoms worse and increase the duration of a migraine attack. I am very nauseated. I have to wear sunglasses inside because even the light from a lamp is too much for my sensitive eyes right now. I cannot even tolerate a shower because just the water hitting my skull aggravates my migraine symptoms. My head is pounding, I’m nauseated, and I have a ringing in my ears. There is nothing I can do at this point but just lay in bed and wait for the migraine to pass.

Coping Strategies

If you’ve ever experienced a migraine, you know how debilitating it can be. I’m sure you’d agree with me that you would do just about anything to make it go away, or better yet, to avoid getting one altogether. I do not take any medications for my migraines, as I have not found any that actually work for me. So what do I do when I get a migraine or feel one coming on? Here are some tips I’ve learned through the years to help when I migraine strikes.

First, it’s very important to stay hydrated. This may help prevent a migraine as well as alleviate some symptoms. The best thing to drink is water, but some people report caffeine can help lessen their symptoms. Severe dehydration can actually cause the brain to pull away from the skull, thereby causing a headache. Dehydration headaches can occur at any time, but are especially common during the summer or in warmer climates, such as the case where I live.

migraine, coping strategies, rest, hydration, massage, supplement

I also take extra magnesium when I’m fighting a migraine, but I’m not positive if it actually works. It was recommended to me by a friend, so it has become part of my migraine maintenance routine. I take double the dosage when I’m actively experiencing a migraine. One study, however, actually found that regular intake of magnesium reduced the frequency of migraine attacks by 41.6 percent. Other research has shown that taking daily magnesium supplements can be effective at preventing menstrual-related migraines. Magnesium oxide is most frequently used to prevent migraines.

Be Kind to Yourself

My next self-care tip is to rest as much as possible. Your body needs rest to recover from this attack on the body. Migraines are exhausting! Like I said earlier, during some of my migraines, all I can really do is sleep, while during the other, my symptoms will not allow me to sleep. Even when I cannot sleep, it is important to rest. I try to do this by unplugging and eliminating external stimuli that may further aggravate migraine symptoms. I avoid light and sounds and just lock myself in my bedroom with the curtains closed all day.

self-care, migraines

Another thing I’ve found helpful in dealing with migraine symptoms is massaging peppermint oil on my temples and in the back of my neck. Peppermint oil contains menthol, which can help muscles relax and ease pain. This is usually most effective for me either when the migraine first starts or when it is about to end. If my migraine is severe, the relief is very short-lived, only about ten minutes, but I will take any relief I can get.

With my most recent migraine, I decided to try something new. I have been experiencing a stiff neck, which I don’t actually get with every migraine. I have been using a CBD-infused muscle rub. I have been massaging it from about the base of my skull though my upper back and have actually noticed some relief. Some people also receive relief from cold compresses on their head, neck, or back, but I personally have been hesitant to try this because of my Cold Urticaria, or allergy to cold.

It’s Not “Just a Headache”

Managing migraines, as with any chronic condition, can be very challenging. I hope you can relate to my experiences and find my coping strategies helpful. Like any condition, people may respond differently to stimuli and treatments. It is important to try to identify your triggers and have treatment protocol in place for when a migraine strikes. Migraines are not “just a headache” and treatments can be just as complex and multilayered as the condition itself. Hopefully, I have helped you identify some strategies that may be useful to you in your quest for relief.

migraine, headache, symptoms, comparisons
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My Sister Is Fighting An Invisible Monster

Cluster headaches are called “The most painful condition known to man.”

The topic I’d like to share with The Unchargeables community is another one that hits close to home for me: Cluster Headaches. Almost 8 years ago, my sister Stephanie, now 30 years old, was diagnosed with chronic migraines, as well as chronic cluster headaches.

For those who are not aware, clusters fall into two categories. Episodic Cluster Headache attacks occur in cycles lasting seven days to one year separated by pain-free periods lasting one month or longer. Chronic Cluster Headache attacks occur for more than one year without remission or with remissions lasting less than one month. You can check out the site Cluster Busters for further information.

A Life Turned Upside Down

Trying to deal with cluster headaches as a child.From the time my sister was 11 years old, she has had several different types of headaches. But this condition has turned her entire life upside down. While there has been some success with medications and oxygen therapy, it turned out not as successful for her. From the time she was little, she has been immune to pain medications; even simple antibiotics take longer to work on her. For the last several years since her diagnosis, Steph has really struggled to get answers. And of course, because cluster headaches are an invisible illness, it is harder for her to be taken seriously about how much pain she truly is in.

You can imagine my frustration being her big sister. I am supposed to able to protect her. And I can’t protect her from this. Instead, I am watching as an invisible monster attacks my sister six times a day relentlessly and without mercy. And people to say things to her like, “Maybe you should see someone.” Or, “Well, you look fine.” What the medical field and the general public don’t seem to understand is that not everything can be easily diagnosed with a simple textbook or basic chart.

We Don’t Know Enough About Cluster Headaches

What has truly shocked me since Stephanie was diagnosed is how many times we have heard, “We just don’t know enough about cluster headaches to know the true cause of them.” I am sorry, but when you’re in the medical field, don’t you often hear how doctors, scientists, and researchers love to discover the next big breakthrough? Why can’t the next big breakthrough be one on cluster headaches? While there have been some great studies done and trials on new medical procedures and medications, there needs to be more of an effort from the medical field and yes, even the media, to take this neurological disorder more seriously.

“The Most Painful Condition Known to Man”

There is a reason this condition is dubbed “the most painful condition known to man.” Individuals with this condition go to great lengths to relieve the agony they’re going through. It is for this reason that I find it highly insulting when someone simply dismisses this condition as “just a headache.” Don’t you think if it were as simple as taking a couple of Motrin, my sister would gladly do it? I also strongly believe that because invisible conditions are not necessarily known to be quick fixes among those in the medical field, it is easier to play the stress card than to find the answer.

Jessica writes about her sister’s struggle with cluster headaches.I also feel that the word “headache” should be removed indefinitely from the description of the condition. It may seem insignificant to do so. But I believe if we do that, it could get a wider spotlight put upon cluster headaches, thus, bringing it to the attention of the medical field and the general public. This could then lead to the start of a very long-awaited conversation on this neurological disease that has affected far too many people.

Just because this condition is considered invisible does not mean it is not real. I guarantee you, it is a very real condition to those who have cluster headaches and their loved ones.

About the Author Jessica Niziolek:

Jessica Niziolek writes about cluster headaches for The Unchargeables.Blogger, disability activist, writer, poet, and podcast host.

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The Day the ER Missed My Brain Tumor

Brain MRI

Watch this article in video format:

The First Signs

I’ve always had an uncanny knack for remembering dates.  Don’t ask me why I still remember that my 6th grade orientation was on August 26, 1997.   But the date February 25th always makes me think back to 2016.  That was the day I spent a solid 8 hours in the emergency room.  And the day a huge diagnosis was missed.

At that time in 2016, I was having migraines almost daily and no one knew why.  I would joke regularly in my journal that it must be a brain tumor. (Although, deep in my mind, “joking” was actual concern on my part at times.) I had already missed entire weeks of work since the beginning of the year, and this was only the end of February.

journal

On January 18, 2016 I wrote, “I’m incredibly restless.  I can’t sit still at all.  I feel tremendous anxiety about missing work    today.  I feel like a horrible person.  But I don’t know what else I can do about these headaches! Maybe I have a brain  tumor.  It would certainly explain a lot.”.

 

Getting Worse

This particular week was my first week back from a two week continuous leave.  I spent those two weeks at various medical appointments.  I was finally diagnosed with Status Migrainosus and was started on five new medications to prevent migraines.  I also sat through three days of 4-hour long ‘migraine’ infusions while I was off.  So far though, I had made it through this first week back at work mostly unscathed.

But on Thursday morning, February 25th, 2016, I woke up around 10 am with the worst migraine I had ever experienced.  I got out of bed to see if it would make me feel better. Sometimes, I would wake up with headaches that were helped by a positional change.  However this wasn’t the case and I quickly decided I needed to lay back down.  Then, when laying down seemed to make it worse (whereas that usually makes it better) I told my husband we needed to go to the emergency room. This was easily a 9/10 on the pain scale.

 

 

Too Bad To Ignore         

(Trigger warning for next paragraph: emetophobia)

    Migraine Laura tietz I called off work, we got into the car, and we drove the 27 miles to the main campus emergency room where my husband works.  The pain was so bad I thought my head was going to split open.  I threw up twice in the car, once while waiting at a stoplight.  I felt bad for the people in the car next to us.

One perk of having your husband work in an emergency room is that you can go in the ‘Employees Only’ access door, scout out the charge nurse, and skip waiting through triage.  As compassionate as healthcare professionals can be towards patients, there’s also something to be said for “taking care of our own.”  Within a few minutes, I was in bed in a corner room of a quieter unit.  My nurse was a friend of ours, a no-nonsense military veteran with a heart of gold.  The doctor who saw me knew my history and had treated me for a migraine in the ED before.  It was during the first week of January, just after the migraine fiasco had begun.

 

At The Hospital

IV

Due to this, he immediately requested a placement for me on the Neurology floor before even seeing me. My husband met him in the hallway to tell him what was going on.  After confirming I wasn’t pregnant, I was given medicine to help with the nausea.  After that, a CT scan to rule out bleeding in the brain. Since I wasn’t, they were able to give me Toradol for my pain. (As an NSAID, Toradol can make bleeds worse.)

 

Before long, the neurology team came and saw me.  They gave me two options: 1) I could be admitted for infusions or 2) I could do a steroid burst and taper.  I chose the latter because I will do anything to avoid a hospital admission and the infusions hadn’t worked the week before.  So I was given a steroid burst in the form of an infusion of methylprednisolone  to hopefully knock out whatever might be causing such a severe migraine.  Additionally, I was given a prescription for prednisone to taper over the next week.

By the time we were getting ready to leave, my migraine was down to 5/10, which was considerably more manageable.  On the way out, we casually mentioned to the attending physician that I had just had an infertility workup and it showed my prolactin was elevated at 98.1, which can indicate a tumor on the pituitary gland.  We double checked that the CT scan showed no brain tumor.  The doctor said, “Anything large would have shown up on the scan so unless there’s something really tiny on the pituitary, it would have been seen.”.

 

A Diagnosis

Less than a week later, I received a message from my reproductive endocrinologist.

“Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause).  This likely       reflects a small growth in your pituitary gland (your prolactin was elevated.) This is the most common kind of pituitary           growth and is usually NOT CANCER.  The next step will be a head MRI.  I see you had a normal CT…”

Laura Tietz Article Photo

On March 9th, I had an MRI that confirmed the presence of a 6 mm microadenoma (specifically a prolactinoma) on my pituitary gland.  I had a brain tumor!  A real brain tumor!  Such a tiny thing yet it was causing such huge problems.  It explained everything, from the headaches to the infertility. (Too much prolactin suppresses ovulation by affecting the levels of FSH and LH, which control ovulation.)  In essence, I wasn’t ovulating because of the tumor.

 

The Next Steps

My treatment was rocky. There were two medications available to shrink the tumor, but I reacted badly to both of them. Although I was no longer having migraines, the side effects of the medications continued to cause me to miss weeks of work at a time.  My quality of life was essentially as bad as it had been before the diagnosis.

After it was determined that I “failed” both medications, I was finally allowed to see a neurosurgeon in July.  While surgery is not routinely performed on my type of brain tumor, the neurosurgeon recognized that the life I was being forced to live was not one that anyone should have to live.  We discussed the options left, surgery or radiation, with surgery having a slightly better cure rate (70%) than radiation (50-60%).  My husband and I didn’t even have to discuss it.  We just looked at each other, a silent communication passing between us.  I turned back to the surgeon and said, “We’ll proceed with the surgery.”.

 

A Final Solution

scalpel

On September 8, 2016, my itty bitty brain tumor, which I had nicknamed “Mini,” was removed during a four hour surgery. I spent 48 hours in the hospital and then continued a very long recovery at home.  A year and a half later, there are still no signs of recurrence.

Am I upset that the emergency room missed the tumor?  No.  As the attending physician said, the tumor would have had to have been “really tiny” to be missed.  And it was really tiny.

 

The Takeaway

While we may get frustrated when physicians miss a diagnosis, especially when others seem to diagnose it easily, we  need to understand that sometimes, a big problem can be caused by something really tiny.  And that really tiny things, even brain tumors, can be difficult to see.

 

Laura TietzLaura Tietz is a pediatric pharmacist. She has multiple chronic illnesses, but she enjoys spreading awareness about them through her blog, ribbonrx.com. Reading, writing and sharing life with her husband and seven cats are her greatest joys in life.

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Chargie Story – How Ashley Made Her Voice Heard

Ashley

My story starts like many others. Aside from the fact that I was quite young.  At 16, I started having nagging pain in my lower back.  Nothing too serious, but uncomfortable enough for me to notice.  However, I was a hard-headed teen and chose to ignore it instead of bringing it to my parents’ attention.

Fast forward two years.  I had just given birth to my daughter.  While carrying her to her room in her car seat, I went to step over a baby gate and my back seized up, causing me to drop my newborn daughter.  Thankfully she was unhurt. But this caused me to question myself and why I had put off seeking help for so long.

prescription pain meds

With my husband being in the military, we move a lot.  So between the ages of 18 and 25, I went to see multiple (questionable) doctors.   Different doctors meant different diagnoses, different approaches to pain, and different prescriptions.  The first doctor told me that I had a pinched nerve that would, in time, heal itself.  I was sent home with a small selection of pain meds and anti-inflammatories.  Even though I knew it wouldn’t “heal”, I accepted what he had said because I was young and he was the doctor, so I figured he had to be right.

The second doctor barely looked at me.  He just poked a little and said, “Oh, a pulled muscle.  You’re too young for anything more serious.” He prescribed me some more narcotics for pain and sent me on my way.  I couldn’t even take the pain medication because it caused me to be so sleepy that I couldn’t function, and with a newborn, that’s just not something I was willing to chance.

     More time passed and I found myself at yet another clinic seeing another doctor.  She looked me over and said that she wanted me to go see a physical therapist.  WOO HOO!  Something new.   Maybe this meant we were on the right path.

Wrong.

     My physical therapist pushed me so hard that I literally couldn’t move for a week.  I was in so much pain I was bedridden after each visit.  I went back to the doctor after attempting 3 visits with the physical therapist and told her I couldn’t go anymore.  She then proceeded to tell me that she would not prescribe any more medication, as she believed that I had already been given too much.  AKA, she thought I was faking and just wanted narcotics.

I left in tears, thinking this is it, no one believes me.  I wondered if I was going crazy.  Am I too young to actually be hurting this bad?  It must be all in my head.

After returning home, I spoke to my husband.  He settled me down and helped me start thinking straight.  So I made another appointment and took my small pharmacy of narcotics that weren’t missing but one or two pills each from the last four years in with me.  I put them on the counter, and told the doctor, “Take them, I don’t want them.  I just want to know what’s wrong with me.  I will continue to make appointments every day until you do what needs to be done to diagnose me.”

Two weeks later, I was laying on an MRI table.  Shortly after that, I was diagnosed.  I had an answer…finally. The doctor sat me down and informed me that I had 2 herniated discs, degenerative disc disease, and arthritis in my T12-L1, and L1-L2 vertebrae.  She said at some point, I’d likely be in a wheelchair.  Minimally, I’d need surgery on my back, but they refused to do the surgery at that time because the risk of paralysis was too high for someone my age.  So I was sent off with nothing but medication.  Again.  I was right back where I started, but at least now, I knew what was wrong with me.

disc degeneration

I am now 30.  Over the last couple of years, I have slowly started hurting all over.  Hands, feet, legs, even skin.  I feel like any time someone touches me they are taking off layers of skin.  There are days I haven’t been able to wear pants.  Days where the seams on my socks have felt like they are knives cutting into my feet.  I’ve started having multiple migraines a week.

I have also started not leaving the house for weeks at a time unless absolutely necessary.

     I put off going back to a doctor, thinking I would just go through what I had already been through: I would get passed between doctors, they would think I was lying, I would have more drugs pushed at me.  Then my husband stepped in.  He told me I had to go.  He all but put me in the car and buckled me in.  After three more doctors, I have now been diagnosed with Fibromyalgia, agoraphobia, depression, chronic migraines, and severe anxiety.

It’s been over a year since my new diagnoses.  We have been playing with medications, doses, and the horrible side effects.  We are still trying to get everything right but at least now I feel like someone is listening.

I feel like I’m not crazy.  I feel like I have a voice and it has finally been heard.

 

 

 

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Permission to Pout

Anyone who has a chronic illness will tell you that it sucks. Often on the UnChargeables site, the other admins and I post funny memes about the challenges we face. We try to handle our lives with the best attitudes possible. I typically try to “make light” of my limitations.

But the truth is- Chronic Illness isn’t funny. It took the life I wanted away from me. I was supposed to be this powerful, successful medical person…healing and saving the world…..and now at 25 years old I am unable to work or drive.

The independent woman inside me even hates to see those words typed on the screen.

This being said, when chronic illness changes your life does that give us permission to pout?

Sadness is a human emotion. Regret is a natural feeling. Guilt is a constant factor lingering in the minds of the chronically ill.

Is it ever okay to let yourself have a pity party?

Contrary to popular belief, I say yes.  (GASP!    Yes…I’ll explain why in a moment)

I had one of these pity parties yesterday. I have been battling my usual fun symptoms with my kidney stones and addison’s disease…but somehow developed an active case of the shingles. Yesterday my pain was overwhelming. I was also hungry and just in a bad mood.

I usually try to be one of these “zen warriors.”  I try to  just swallow the pain and stress and put on a happy face. But I didn’t have the energy or the will to fake a smile.

I let myself cry. I let myself feel all the negative emotions.

I admitted I wasn’t the invincible warrior I try so hard to be.

And then I let it go.

I had a good cry, took a bubble bath and ordered a gluten free pizza.

I gave myself permission to pout.

I think everyone should, once in a while.

Bottling up emotions, grief and pain will only inhibit your health. Feeling emotions is necessary step in healing.

Have the pity party, just don’t attend it every night.

Feel the emotions, then let them go.

 

 

To read more from Winslow click here – http://winslowedixon.wordpress.com

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Beyond Existence, Living with Daily Chronic Migraine

chronic migraineBy Kimberlee MacLean

I’m on a deserted island in a sea of deserted islands; my chronic condition is the sea that separates me from others. We all have made shift rafts that allow us to visit one another from time to time, but we always end up back on our spot of ground. Sometimes I visit someone with Lupus, or Fibromyalgia, or even someone who lives with the same condition I have: daily chronic migraine and I feel, for too brief moments, that someone else understands. I don’t have to educate or feel that niggling obligation to prove that, indeed, I face it every day; that I’m not faking it.

 

I’ve had a daily chronic migraine for eleven years. Although the chronic migraine condition is defined as lasting more than 15 days per month, I experience some level of pain every waking minute of every day. So do most of the people I know who have the same condition.

I’m sure I started my search for relief like many:

I wanted the magic pill. I had unquestioning faith in the medical community and thought that, surely, there was some way to fix this thing that had turned my world upside down. Then I discovered that medicine is as much art as science and that my condition, like so many, eludes effective long-term treatment.

So I turned to alternate therapies.

Everything from acupuncture to massage. From the power of positive thinking to elimination diets. From consistent sleep to exercise. From trigger point injections to radio nerve ablation. They, like the medications I’ve tried from western medicine, didn’t provide long-term effective relief.

It’s easy to get disheartened.

Even those of us who manage to hold onto hope on a regular basis, spend some time in the clutches of despair, wondering if we can keep going through the long days that will inevitably follow. So what does work? How do we move forward? How we do more than exist? How do we live?

 

Although there’s no magic pill or wand here either, I’ve found some practices that help and that, unlike some medications, continue to provide some benefit no matter the length of time I practice them.

 

Manage Your Health

My health is solely my responsibility.

I only see doctors who will work with me. A doctor who will partner with me, one who explains their suggestions and who listens to and answers my questions, one who will graciously accept me declining specific treatments for reasons I explain is the cornerstone of me effectively managing my health. Doctors that unilaterally make decisions regarding my medications, procedures, and treatment are immediately fired. Anything I put into my body and anything that is done to my body is ultimately my decision.

 

I research and read and learn.

I bring possibilities to my doctor as much as they present possible treatments to me. And I inform them of everything I try and its efficacy or lack thereof.

I am my own guinea pig.

There is little I won’t try if it’s low risk and, with the knowledge and help of my doctor, I can research and implement on my own. I’ve been a vegan and a vegetarian. I’ve practiced yoga. I’ve removed processed sugars from my diet. I’ve researched hormones, their impacts and ways to regulate them through diet and exercise, and implemented those dietary and exercise ideas. And I’ll continue to see what might work. Ensure that any changes you make or therapies you try is under the supervision of a doctor! Many practices can have effects on current medications and other therapies you may be undergoing as well as present health risks that only your doctor can help you understand.

 

Get An Extra Spoon

No matter what our circumstances: spouse, parent, employee, single, friend, lover, there are things that need to be done in life. Grocery shopping, or ordering food when cooking is entirely out of the question, but eating is possible. Cleaning so that there are times when we can actually see the floor. Laundry, bathing, brushing teeth. These things sound easy. But when getting out of bed is a feat of extraordinary fortitude, the multitude of tasks after that are simply impossible.
I used to spend my “good” days attending to all the things that don’t get done regularly, followed by falling exhausted into bed with hopes that tomorrow might bring another “good” day. Soon I found that all of my “good” days were spent doing things that had to be done. Certainly, it felt good that a few tasks were checked off the list, but the list never ends. Add to that exhaustion that inevitably followed the frenzy of activity. My cup was always empty; my spoons spent on either feeling awful or doing what had to be done.

 

Those of us managing a chronic condition feel like we need to do it all, and in a fraction of the time, it takes those without our particular challenges. I’ll let you in on an enormous secret: we don’t. We will not be bad spouses if we don’t get the house cleaned. We will not be bad employees if we miss work on occasion. We will not be bad friends if we can’t make a birthday party. Most importantly, we are not bad people because we aren’t able to function the way many others do.

 

It’s hard to believe; to convince ourselves that, indeed, we are worthy; that we are enough. We have those angels perched on our shoulders shaking their fingers at us. Well tell that angel something from me: go pound sand. Even better, tell that winged creature yourself. Really get into it! Get creative. Make up horrible names for the beastie. It feels fantastic.
You have permission to care for yourself. We can’t continue to spend spoons on the incessant “shoulds” of the world. Those actually cost more than one spoon. Try it out. Keep hold of that spoon for the day. And keep hold of another one the next day. Chose a different spoon one day for a week and see how you feel at the end of the week. Seriously, make a note of how you feel on Friday night or Sunday night or whatever night works. Then take that entire week and save spoons. Reassess at the end of seven days. Scan your body. Scan your mind. Only concentrate on that. See how you feel. If it works for you, keep it up.

 

Meditation

I don’t mean this in the spiritual or prayer sense, but if that works for you, by all means, run with it. It makes more sense to me as a method to train the brain. In managing my condition, I’ve tried everything. Medication, exercise, supplements, nerve blocks, Botox, trigger point injections, and more dietary changes than I can count. And still, meditation is the single most effective thing I have found.I started it because I’d read studies that showed it helped with

 

I started it because I’d read studies that showed it helped with chronic pain. And, as I’ve repeated said, I’d stand on my head and sing The Star Spangled Banner if I thought that would provide a modicum of relief.

 

I, like many, get tied up in horrible thoughts. About how worthless I am because of the condition, how I’m incapable of living a fulfilled life, how awful a parent I am, how terrible a spouse, how I’m not capable of working consistently on anything, how I just can’t take it anymore. And it goes on. So, on top of pain (and nausea, and light/sound sensitivity, and cognitive issues), I can find myself panicky and miserable.But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel.

 

But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel. This practice has offered up the ability to allow me to be human, and sometimes less than human. I can let myself, if not fold the towel and place it aside, throw it in and recognize the days that I need more self-care than to care for others. And it actually helps me think through ways to make that happen. It allows me to offer myself forgiveness and compassion for my weak moments, and to ask for help without self-recrimination. In a nutshell, it has offered me more freedom than I felt even before the daily chronic migraine struck.

 

It’s not perfect, and it took some practicing before I started to manifest forgiveness and compassion for myself. I still feel the pain (and nausea and light/sound sensitivity, and cognitive issues). But I have my life back. I can live joyfully when conditions are low enough without the thought that it will be short lived. I’ve traded in panic for peace, and terror for calm. Even in the midst of awful days, I’m still me, and I can actually see that there may be a good day on the horizon. It has allowed me to leave mere existence behind and live life more fully than I thought possible.

 

Kimberlee Maclean is a fellow Unchargeable who suffers from Chronic Migraine.