fibromyalgia Archives - The Unchargeables

March 27, 2020March 29, 2020

Hyperhidrosis and The Realities of Living with Excessive Sweating

Living with hyperhidrosis can be challenging. The contents of this article may seem like too much personal information about bodily functions for some people, however, I feel that hyperhidrosis is something that is not talked about a lot in the chronic illness community. We need to delve into the TMI (too much information) realm to discuss it.

I used to think that I was a gross freak of nature for sweating so much, but after connecting with other people who experience a similar thing I realized that it is more common than I thought.

What is hyperhidrosis?

Hyperhidrosis is abnormally excessive sweating that is not always related to heat or exercise. Someone with hyperhidrosis may sweat so much that it soaks their clothes and drips down their face and hands. People normally sweat when they exercise, are hot, are anxious or under stress. The sweat that accompanies hyperhidrosis far exceeds this normal level of sweating. Hyperhidrosis can also be made worse by factors such as heat, exercise, sweat, stress or anxiety.

Primary Focal (Essential) Hyperhidrosis

The most common form of hyperhidrosis is primary focal (essential) hyperhidrosis. This occurs when the nerves responsible for signalling your sweat glands malfunction and become overactive. This type of hyperhidrosis usually affects the palms of your hands, the soles of your feet, and in some cases your face. There is no determined cause for this type of hyperhidrosis, however, it may be hereditary as it runs in families.

Secondary Hyperhidrosis

Secondary hyperhidrosis occurs when it is a symptom of another medical issue. It is more likely to cause widespread excessive sweating than primary hyperhidrosis. Conditions that may result in excessive sweating can include:

Thyroid issues
Diabetes
Infections
Some types of cancer
Heart issues
Nervous system disorders

Some medications can also cause excessive sweating.

Experiencing Fibromyalgia with Hyperhidrosis

My secondary hyperhidrosis is caused by my severe fibromyalgia, which is a central nervous system disorder. While some of the medications can cause secondary hyperhidrosis, my experiences with excessive sweating began in childhood, long before I started taking these specific medications, but after I started suffering from chronic pain.

Of course, weight can impact how much you sweat, and I am overweight. However, as said above, I have been experiencing this excessive sweating since before I was even a teenager, and I weighed nothing close then to what I weigh now.

How Hyperhidrosis Impacts Social Situations

Work: If your job is in any way stressful and you deal with hyperhidrosis, you may find you sweat a lot at work. If you work around others, such as in a customer relations role or in the office, the excess sweating may make you anxious about how others may perceive you. This anxiety may impact your productivity if it becomes severe. Hyperhidrosis may also impact your opportunity of gaining new employment if it becomes problematic during job interviews. Since sweating is usually a sign of anxiety, even the calmest person with hyperhidrosis may look extremely anxious to the interviewer. This could have a severe impact as to whether you are chosen for the job. Shaking hands can also be a source of anxiety particularly if you have primary focal hyperhidrosis which causes sweaty palms.

Night clubs: As a young adult, every once in awhile I like to go to a night club and dance with my friends. Even though I find this extremely draining, I like to experience just a few hours of normality. Many nightclubs are crowded and warm. Hello Extreme Flare! It can be difficult to enjoy myself knowing that I have sweat visibly dripping down my face. This can also impact my chances of meeting new people and starting new relationships. , The excessive sweating may cause people to judge me before they get to know me. This is definitely a disadvantage for the single girl like me.

Any social occasion: Hyperhidrosis can impact any situation. Going to a café, a theme park, the beach, the movies and attending school are all different for a person that has to consider excessive sweat. Hyperhidrosis and extra sweating can become a source of anxiety at any time, but when it’s flaring especially when it’s flaring.

Tips and Tricks for Coping With Hyperhidrosis and Excessive Sweating

Now that I’ve listed the ways hyperhidrosis may negatively impact social situations, I will now tell you my tips and tricks for coping with hyperhidrosis and living with excessive sweating that I have developed throughout my own experience.

Waterproof Makeup

The facial sweating that is the result if hyperhidrosis can ruin any makeup you may be wearing. I personally love wearing makeup every once in a while for nights out or on a day I feel like dressing up. Unfortunately, if I’m not careful with what products I use my makeup can end up dripping down my face. Utilizing a good primer and a waterproof foundation and concealer are a good start. Make sure your mascara and eyeliner is waterproof if you enjoy using those products. You can even find inexpensive brands at your local retailer and online. Many brands meet these suggestions.

Dressing in Light Layers

Very many people live in a place where the weather can go from cold to hot within a few hours. Dressing in light layers is the way to go. If you also suffer from temperature control issues spring layering is good strategy for you, too. Utilize cardigans because not only are they light but they also don’t take up too much room in a bag while out and about. If it is chilly in the morning wear a t-shirt and a cardigan over top. It is easy to take take it off later on in the day.

Portable Fans

This may seem a bit extreme, but if you’re prone to over-heating on a regular basis like I am, a portable fan can be invaluable. I got one for $8 from The Warehouse, and I love it. It’s rechargeable by USB and has multiple levels of intensity. This would be perfect for days at university during summer, long days of traveling, or days when you’re spending a lot of time outside in the heat.

Apply Multiple Layers of Antiperspirant

With secondary hyperhidrosis the sweat under your arms can become excessive and can be very hard to manage. Recently I have started using multiple layers of antiperspirant using two different types and I find this helps well for summer. I use a cream antiperspirant under my arms first and then a spray antiperspirant on top. While this does not completely stop underarm hyperhidrosis it does make it more manageable. There are some more aggressive options you may discuss with your health provider in some places.

Body Wipes and Shower-less Body Wash

If you have hyperhidrosis and live with excessive sweating in addition to chronic illness then managing your hygiene can be very difficult. Bathing, for example, can be very difficult for those who experience symptoms such as chronic pain and fatigue. Some days many Chargie’s do not have the energy to shower. Other days I may end up perspiring a lot requiring multiple showers. In these cases it is convenient to use deodorant body wipes or shower-less body wash. Deodorant wipes are targeted especially at lessening odor. Shower-less body wash can be used without washing it off and do the same thing.

Many people like to use baby wipes in the place of deodorant body wipes. I find that baby wipes don’t work very well in comparison. Products specifically targeted at killing sweat caused germs and odor do a much better job, and I find that body wipes are more moist with product, therefore you end up using less wipes.

When you experience hyperhidrosis and living with excessive sweating it can feel very isolating. However, there are things you can do that make coping with it a bit easier. It was also helpful for me to learn that isn’t something that I go through alone. Surrounding yourself will people who understand your condition can also make a huge difference. Having a non-judgmental environment can become your social safe space. I know that when I start sweating excessively my close friends won’t judge me for it. Therefore I never become anxious about it around them.

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.

March 25, 2020March 3, 2020

6 spot on memes about Fibromyalgia

Fibromyalgia is a condition that causes pain. There are many different symptoms that can range from pain, fatigue, migraines to insomnia, inflammation and sensory overload.

When you live with Fibromyalgia or know someone who lives with it, you may recognise what they are talking about in the memes.

Taking a shower can cause pain. When the pressure of the water is too high, or the warmth. The water hitting against the skin can cause real pain. This is one of the reasons I don’t like taking showers. Next to it causing pain, it’s super exhausting too.

The little monster in the meme is called Gia. She is the Chargimal that represents Fibromyalgia. Together with her friends she has adventures, but with caution cause she is low on energy due to her Fibro. You can learn more about her and the other Chargimals over here

I pick my clothes based on which body parts hurts the least that day. That’s also how I pick which chair to sit in today.

Living with Fibromyalgia is not for the weak. There is no known cure, and keeping symptoms and flare to a minimum is hard to do.

January 25, 2020January 4, 2020

At least it’s not cancer…

Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.

Fibromyalgia the mysterious disease

I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.

I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.

With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)

Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?

Many vague symptoms

Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.

Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.

doctors don't know what's causing my symptoms

People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.

Graves’ Disease

At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.

At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.

But at least it’s not cancer, right?

The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.

A decade later

Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!

Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.

lot's of health lab tests without a result

“At least it’s not cancer” is again not making me feel any better.

6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again

What does the future hold?

At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.

I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.

I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”

August 24, 2019August 24, 2019

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.

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.

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 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.

August 5, 2019July 31, 2019

Breastfeeding and Chronic Illness (My Personal Experience)

My Experience Breastfeeding with Chronic Illness

During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20^th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.

After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy. We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often. During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.

My Experience Adjusting to Breastfeeding

During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work. I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time. I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up. I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.

The Exhaustion of Adjusting to Breastfeeding with Chronic Illness

My husband has been a huge support, along with my parents, for both our girls because they will take my girls and let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke up often to feed, but it happened around the same time throughout the night. No longer experiencing this interruption of sleep predictability helped me to cope and not be as grumpy or frustrated with my sleep being interrupted.

The Stigma that Surrounds Breastfeeding

Breastfeeding can be difficult for anyone, not just people with chronic illnesses. There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc… There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage. There’s a lot of work no matter what, and it can be a struggle.

Medication and Breastfeeding

Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication. Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication. After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding. I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.

He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone. We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring.

It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding. If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.

For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health. My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.

July 13, 2019June 28, 2019

Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.

July 6, 2019June 29, 2019

There Is Always Hope – Pamela’s Spoonie Story

My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 56 now. Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.

Over the years I’ve had my share of surgeries, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!

My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.

The List Of Chronic Illnesses Goes On and On

So now, in addition to my Fibromyalgia and Myofascial pain, I live with:

Chronic Pain / Chronic Fatigue Syndrome
Osteoarthritis (in all my major joints)
Forestier’s Disease (aka D.I.S.H., a spinal condition affecting my thoracic spine)
Type 2 Diabetes (on insulin)
Trigeminal Neuralgia
Bipolar Disorder
Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
Bone spurs on fingers on right hand, plus inflamed tendons in right palm
High Cholesterol
Raynaud’s Disease
Hypothyroidism
Brachydactyly Type E (a genetic bone condition I was born with)

Pam In Pain

I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the Myofascial trigger points, including Botox, but nothing helped. My Fibromyalgia wasn’t really treated other than putting me on Lyrica first and then Cymbalta, and that’s all the treatment I’ve had for it.

I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain-free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.

My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!

For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.

In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain. My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so.

The Future Is Full Of Hope

This year, I will be facing brain surgery as a result of my Trigeminal Neuralgia. I’ve run out of treatment options as the drugs I take no longer are effective. I’ve even tried Botox for my TN, but without good results, so I’m looking at a surgery called Micro Vascular Decompression to relieve pressure on the Trigeminal Nerve and hopefully it will leave me pain free!

So what have I learned through all of this?

I am stronger than I thought I was, and I’m able to tolerate a lot more than I thought I could
You need a team, or at least one good partner to help you when you live with health issues. For me, it’s my husband Ray. I couldn’t do this alone, but he makes everything better. He believes in me, he helps me physically with things I can’t do, and he never makes me feel like I’m “less than” for not being able to do things because of my physical pain or my fatigue.
Pacing – you need to be able to pace yourself throughout the day in order to live your best life with chronic pain and fatigue. That means letting some things slide in order to accomplish a few other things. For example, Monday may be a day for sweeping and that’s it – dishes have to wait. Or, you do the dishes, but vacuuming gets put off until tomorrow. You need to learn how much energy you have and the best way to use it. If you haven’t read the Spoon Theory, it’s a good example to explain all about energy and how much it takes for us to do everyday ordinary things.
You are enough, just the way you are. Period.
Accept that this is reality but never give up hope for things to improve.

I struggle with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.

About The Author

June 15, 2019May 15, 2020

Me, Myself and My Fibromyalgia!

At the age of 14, I fell off a stack of gym mats at school and I hurt my knee. At first, the doctor thought it was just a sprain, but as the months went on my injury did not seem to get any better. This is where my journey of having a chronic illness all started.

For twelve long years, I was as healthy as I could be on paper…but every day was a struggle. I was in a lot of pain and nobody seemed to know where it was coming from. I was feeling so tired I sometimes would fall asleep while talking. At least once a month I had to call in sick at work and one by one I started to lose friends. Some of them even labeled me a hypochondriac. Nobody seemed to understand the struggle I was going through.

the doctor thought it was just a sprain, but as the months went on my injury did not seem to get any better

I was sent to a physiotherapist and he was able to provide me with some exercises, next to weekly electrotherapy sessions, which made my knee injury a little better.

Allergic to a flu?

At the end of the summer of 2009, I went to visit a friend for the weekend, on the way home I started to feel sick. My head was hurting and the “brain fog” I always felt was so bad I couldn’t remember how to open my front door.

My fingers started to swell up and breathing became difficult. I had caught the Mexican flu somewhere along the way and it came in hard. My body overreacted to this type of flu and as an allergic reaction I suddenly had developed acute Rheumatism. Every connected tissue (including all my joints) was inflamed and I was bedridden for nine weeks, mostly thinking this would kill me, it hurt that bad.

Not being able to move, meant not being able to go to the doctor!

Living in an Amsterdam apartment on the fourth floor meant I could not go to the doctor so he came to me. After several blood tests, he diagnosed me, there was nothing else to do but to take painkillers, anti-inflammatory and wait till it got any better.

Going to the bathroom from my bed was only a three metre distance, which took me half an hour as I had to crawl there. I was in agony and at one point breathing became so difficult, I thought I was going to die. Luckily my sister and her husband were living around the corner and were able to help me with things. My sister made sure I had food in the house and kept me company several hours a day, her husband helped me (when he wasn’t at work) by carrying me to the bathroom so I wouldn’t have to crawl there and back.

Recovery was what got me diagnosed.

Recovery was tough, but my physiotherapist (the same one I had, every month ever since my accident at the age of 14) was the one that told me he thought he knew what I was dealing with. Fibromyalgia! Before he mentioned this I had never heard of Fibromyalgia and immediately I read up on everything there was to read about this illness.

A few years along the line

About three years ago I found out by chance I also have a severe gluten intolerance, which made me sicker, on top of my Fibromyalgia. I now eat gluten free which helps me keep my health up as much as possible. I exercise daily and have a strict sleeping routine, of going to bed and waking up on set times.

Now, about ten years after my diagnosis, I have learned that I will never know what tomorrow will bring to my body and health. Mentally it has put me through highs and lows and I have learned how to enjoy my life instead of feeling depressed about having a chronic illness.

I went from somebody who doctors thought would end up in a wheelchair before 35, to a woman capable of living life to the fullest, and by adjusting to my illness and accepting my illness, I sometimes even forget I have Fibromyalgia.

About The Author

Born and raised in Amsterdam. Sarah always knew she needed to travel the world. She began travelling at the age of 19 and has traveled to and lived in over 25 countries.

Being confronted with a chronic illness at a young age, which has never stopped her dreaming of the next place to travel too.

Together with her 3 dogs Sarah now lives on the Canary Islands where she teaches English, works as a self-employed translator and copywriter and occasionally provides dog training lessons.

June 1, 2019May 10, 2019

Growing Up With ‘Painsomnia’ And The Coping Techniques I Have Found Along The Way

Painsomnia, a combination of the words ‘pain’ and ‘insomnia’, is often used in the Chronic Illness community to describe the inability to fall or remain asleep due to suffering physical pain. People with Chronic Pain can often experience painsomnia, which can result in chronic fatigue.

Experiencing Painsomnia as a Child

I was about 7 years old when my parents first became worried that I was complaining of being in pain far too often. I complained that my back and hips hurt, and nothing seemed to ease the pain. My parents would struggle to get me to sleep every night. My mum tells me that I would constantly get in an out of bed, and they would often give me paracetamol and send me back to my room. All the tests that I underwent came back clear.

I remember nights when I would lie awake in bed before I even hit the age of 10, crying my eyes out, praying to God to take my pain away. I often wouldn’t settle and fall to sleep until about 11:00 pm. This, as you can imagine, left me very tired in the mornings, and it became a mission for my parents to get me out of bed and to school. I was a kid, and I didn’t understand what was causing my pain and why.

Middle School Years

Skip forward to when I was about 11 years old. My pain had spread throughout my body, and I was no closer to getting answers as to why. After having coped with chronic pain for 3 years at that stage, I became burned out. Painsomnia was definitely a factor in this. I even started falling to sleep in class, despite the fact that I saw myself as a dedicated student.

As a result of my health, my parents enlisted me in a partial home-school program that was run by the public health service for children with health issues. This resulted in me only going to school 2 or 3 days a week. Before I reached high school, they slowly increased my hours at school again until I was back to attending school full time.

Around that age was when I finally received the closest thing to an answer I may ever get. One word; Fibromyalgia. This, along with CRPS (Complex Regional Pain Syndrome, which I was diagnosed with after an injury to my wrist that occurred when I was 13) is the source of my painsomnia.

Experiencing Painsomnia During Highschool and University

As I got older, my pain got worse and became more constant, until there wasn’t (and still isn’t) a moment of the day that I wasn’t in pain. Due to my increasing levels of pain, my painsomnia got worse. As a result of my painsomnia worsening, my level of chronic fatigue increased. And as a result of the increased fatigue, my pain got worse. It’s a vicious cycle.

It was during high school that I was introduced to some more of the symptoms that come along with painsomnia; I often found it difficult to concentrate during class and my memory suffered. This made studying for subjects such as the sciences and Calculus very difficult. Though I enjoyed these subjects, my grades weren’t all that high because absorbing the information was extremely difficult for me. I found that I did better in my more creative classes such as Photography, English, Graphic design, and Fabric technologies.

I fought my way through high school, and while at the beginning I constantly had sick days, by year 13 (my final year of high school) my attendance was above 90%. It wasn’t easy. Every day once I got home from school I was exhausted beyond belief. I could barely get out of bed for dinner. Luckily, my parents understood and weren’t too hard on me about my lack of extra-curricular activities. While at school I spent a lot of time in the nurse’s office, taking painkiller as prescribed every lunchtime and resting with a heat pack when the pain became too much.

Present Day

Skip forward to now. I’m 19 years old, and my sleeping patterns are tragic. I head to bed between 10-10: 30 pm. I then lie in bed, either reading or watching YouTube videos (with my phone on Night Mode) until I’m tired. Often, I may not become tired until 1:30-2: 00 am. To someone who does not experience painsomnia, this may seem like a very bad habit.

Growing Up With ‘Painsomnia’ And The Coping Techniques I Have Found Along The Way - woman awake in bed at night

However, if you suffer from painsomnia. no matter how early you go to bed or how strict you are about avoiding stimuli before bed, you aren’t going to fall asleep until you’re so incredibly exhausted that the internal war between sleep and pain finally comes to an end for the night… At least, until your pain wakes you up again during the night and the cycle begins anew. For me, distracting myself from my pain until I become tired helps me to fall to sleep much faster than when I lie in complete darkness, having nothing but my pain to focus on.

If left uninterrupted, after a late night of experiencing painsomnia I can easily sleep in until 10.30-11.30am. However, life doesn’t always allow that. Not only do I attend University on average 3 days a week, I also have to do everyday tasks such as shopping and errands that mean I don’t get to sleep in as long as I may like to.

My worst nightmare is 8:00 am classes at Uni. I live 2 hours and 30mins away from my uni by public transport. Once you factor in a 30 min leeway in travel plans (in case of transport failure) and time to get ready in the morning, this can result in a 4:00 am wakeup. This can leave me absolutely exhausted for the rest of the day, which of course impacts my ability to absorb the information that is presented in class.

Regardless of whether I wake up early or sleep in, I still struggle with my concentration and memory. This makes studying at University a challenge, but I plan to fight my way through it, just like I did in high school.

Techniques I Use to Cope with Painsomnia:

While painsomnia can often be inescapable, I have formed some techniques over the last decade that help me cope with it. The first is microwaveable heat packs. These are little fabric cases that are often filled with wheat that you can stick in the microwave and put on your sore spots. The warmth from these heat packs can help reduce the pain, muscle stiffness, and muscle spasms that may be the cause of your painsomnia. Alternatively, if you find cold more therapeutic than heat, you could use ice packs.

The second thing that helps me cope with painsomnia is me taking a magnesium supplement at night, which was suggested by my doctor. Magnesium supplements support deep and refreshing sleep, can reduce stress, and can also help with restless leg syndrome. If you think magnesium supplements may be beneficial for you, check with your doctor or pharmacist to ensure they will not react with any other medications or treatments you may have.

Another technique I recently discovered that assists me falling to sleep faster is listening to ‘sleep music’ as I try to fall asleep. Listening to slow, soothing music before falling asleep can help you fall to sleep faster and wake up less during the night. When I first decided to give this a go, I searched “sleep music” on YouTube, and listened to a few different tracks until I found my favourite one. It runs for 3 hours, so it even runs after I’m asleep (unless I’m experiencing severe painsomnia).

The last, and probably the most obvious, coping technique is napping during the day. Napping isn’t just for young children. Napping, especially when you’re experiencing chronic fatigue, can increase your concentration, can improve your mood, and can reduce stress. If you’re having a busy day, and know you have to be at your best in the afternoon or the evening, a nap can leave you refreshed.

Dealing with painsomnia on top of your other chronic illness symptoms is exhausting. Especially so for a child. I’ve dealt with painsomnia for around a decade now, and though I haven’t yet gotten rid of it, I have discovered techniques that can help me, and that will hopefully help you, cope with it.

About The Author:

May 18, 2019June 21, 2019

Depression: In The Depths Of The Nothingness

Writing may be one of my biggest loves in this life, but it’s also one of my biggest struggles thanks to my health. As a person with chronic illnesses and major mental health struggles, I don’t write as much as I would like to or as much as I used to.

I still find the same release in writing that I always have found but, more often than not, I just can’t bring myself to write. Post-exertional malaise from my ME, and cognitive difficulty from my fibromyalgia makes the activity of writing difficult in itself, but there’s more to it than that for me; a different kind of blockage that can be hard to pin down.

The Blockage

This piece has been doubly difficult for me to write. Not just because of the writing process itself, but because of the subject matter. I chose to write an article for Mental Health Week about depression. And depression makes me lose interest in the things I love. There’s definitely an irony in struggling to write about depression because of depression, isn’t there?

I want my writing to make others feel less alone, but how on earth was I going to approach this topic? When it comes to something as multifaceted as mental health, it can be difficult to know where to even start. My brain quickly got to work on bullying me.

Why would anyone want to read something you wrote anyway?

You have nothing interesting to say. All your work is bland and rubbish, just like you.

I don’t know why you even bother.

There are too many better writers out there. You’ll never be taken seriously.

Your thoughts aren’t valuable enough to be paid attention to.

So here I am, scrambling around inside my foggy brain trying to ignore the bullying thoughts in my head and to figure out whether anything I have to say about depression will even make sense enough to shape into an article.

Describing The Indescribable?

Up until a few years ago, I thought of depression as an intruder. It would fully catch me off guard, kind of like a huge predator stalking in the shadows and then jumping out in front of me when I least expected it. Some people describe depression as a black dog which won’t leave you alone. As my life has gone on, I’ve come to see it more as some kind of dangerous plant, thriving in the darkness and slowly growing; creeping its way into my life until I’m swamped.

Its roots are deep, and its vines reach further and further into my present consciousness until I can feel them grasping me by the limbs and the throat, pulling me backwards into the dark. Sometimes the vines loosen their grip and retreat, and I can breathe again but, even then, I still know they’re only biding their time. They’re still there, lurking…ready to creep out of the shadow again at some point. And as the years have gone on, each trauma or stress that life has thrown my way has only strengthened the roots in those murky depths of my psyche.

As well as the stigma, there’s a lot of misconceptions out there about depression. People often think that feeling down for a few days or a couple of weeks is being depressed. It’s not. That’s just feeling blue, which is something that most people experience at some point in their lives. Feeling down occasionally is part of our normal range of human emotion, just like feeling sad is. Feeling sad when something bad happens is not depression. That’s a normal reaction to something bad happening, and will usually dissipate with time. When the low mood persists long-term, that’s when it becomes a problem.

Doctors and psychologists usually look out for common symptoms when diagnosing depression, such as a loss of interest in things that you normally enjoy, feelings of worthlessness or of despair, feelings of unrealness and even urges to harm yourself in some way. Check out this guide from the charity Mind to find out more about symptoms, causes and potential treatment options. Their website is also full of resources about other mental health disorders and information about where to find help.

The Numbness

Perhaps my least favourite symptom that comes from being in a depressive episode is what I now call the nothingness. This is something that I have experienced since I was a teenager and still frightens me to this day when it happens. It’s not that I feel sad, or upset or even down, I just feel…nothing. In these times my emotional range seems to just shut down. I can’t feel anything or recall how emotions normally feel. It is the complete absence of feeling, and I wouldn’t wish it on anybody. It is the most isolating thing I have ever experienced, and every time I feel my mental health slipping I become fearful of that emotional numbing.

When I’m numb, I would kill to feel sad or angry because then at least I would feel something. Many people I’ve tried to express this to simply can’t wrap their heads around it. I discovered a few months ago that this kind of emotional shutdown can be a response to past psychological trauma.

Going back to writing, it’s really no surprise that I struggle to do it a lot of the time. It’s sometimes like the parts of my brain that feed into creativity have been boarded up like an old abandoned house. It’s like somebody cauterized by ability to even think clearly, let alone comprehend those thoughts and translate them into words.

Depression

Depression makes it feel as though my brain just won’t work in the way it’s supposed to; the way I know it can work. It feels like there is a thick cloud of fog filling up the spaces in my head. Things don’t seem right; things don’t make sense. I can’t even make decisions. The smallest of decisions feels disproportionately impossible. Do I want a glass of water or a glass of juice? Do I prefer red or blue? Am I a good person or a bad person for the answers I picked? I can’t decide what I want to watch, what I want to read, what music I want to listen to.

I know that I’m passionate about things, somewhere beneath all the fog, but those things seem shapeless; far away from me. I feel completely disconnected from myself, as though the body and mind I inhabit do not belong to me. I interact with my surroundings, but it’s all robotic. I’m not sure what is real.

It’s a cruel state of mind to be in. Perhaps it’s even crueller that all of this is invisible to the world around you and can be masked by a simple “I’m fine!” when somebody asks you how you’re feeling.

We have to be brave enough to answer “I’m not fine.”

About the Author:

Charlotte is a 26 year old writer from West Yorkshire in England. After a spinal cord tumour left her disabled at 19, she started writing about her experiences alongside her university studies. Her blog is called Of Books and Stardust. She also has ME and fibromyalgia, and has experienced mental health problems for most of her life. She writes to raise visibility and to help others feel less alone. Charlotte adores literature, has always loved caring for pet bunnies (or do they care for her?) and is passionate about spirituality, paganism and witchcraft.