Invisible Illnesses – Kayleigh’s story – Generalised Anxiety Disorder

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people who suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

Last week we heard from Laura and about how she copes with daily crushing migraines. This week we are speaking to Kayleigh about her condition Generalised Anxiety disorder.

 

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

Hiya! I’m Kayleigh, i’m 29 and live in the beautiful Cotswolds with my Fiancé Luke and our little girl Freya who will be 3 in May! As well as being mummy to our little monkey I work part time as a beauty therapist and have worked within the beauty industry for almost 10 years! I enjoy country walks, family days out, reading, anything beauty related and blogging about family life, lifestyle and beauty. 

What is your invisible illness?

– I have a Generalised Anxiety Disorder.

When did you first notice your symptoms?

– I first started to notice that something wasn’t quite right in my mid teens, around 14/15. I remember one night in particular I was just laying In bed, unable to sleep and out of the blue I began to feel really agitated, tight chested and feeling like i was struggling to breathe, I was terrified. I didn’t have a clue what was happening at the time but that was when I experienced my first anxiety/panic attack. Looking back I can see how Symptoms was building up to that attack but of course back then I had never experienced anything like it and had no idea what it was.

What was it like getting diagnosed? 

– I tried to hide my anxiety and symptoms for a very long time before seeking help simply because I had no idea what was happening to me and I was just so scared. I suppose I was just hoping it would go away but unfortunately that wasn’t the case and the anxiety just got worse. It became so overwhelming I eventually just broke down in tears one day whilst talking to my mum who then contacted my Doctor.

It took many Doctors visits, counselling sessions and a great deal of time until I was finally diagnosed with a Generalised Anxiety Disorder. During that time I just felt confused, scared and frustrated but I had so much support from the many doctors, other professionals and my close family and of course Luke and that really helped me through. It was tough but I remember it being such a relief when I finally opened up about how I was struggling, it was the first step to understanding my condition and learning to control it.

How does it affect your day to day life?

– Over the years I’ve learnt ways in which i can have more control over the anxiety however it does still flare up at times and it can affect you in so many different ways. During those more difficult times I feel I am constantly on edge, agitated and irritable, it affects my moods and it’s hard to concentrate on anything but the nagging anxieties which pop up out of nowhere, it can make me feel quite low. Simple everyday things become more difficult, popping to the shops for example can be completely overwhelming and throughout the day i’ll have waves of anxiety which becomes both mentally and physically draining.

Do people treat you differently because of your illness? 

– I think unless you have experienced it yourself any type of mental illness can be very hard to understand, It’s only in the last year or so that I’ve become more open about my experiences and struggles with my mental health. I wouldn’t say I’m treated differently but I would say that people do find it hard to understand and uncomfortable to talk about and at times I do feel it gets ignored and because it is mostly an invisible condition that it’s almost not as important or just not as much of a problem.

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

 – My advice would be that it’s incredibly important to find someone that you can talk to. It can be a family member, friend, loved one, work colleague, GP or organisation etc just find someone you can open up to and if you haven’t already please, please do ask for help. There is help out there and people that truly understand, you are not alone and it’s so important to know that. I also found a lot of support from online communities especially during my diagnoses, finding others that had similar experiences was very helpful for me.

Do you know of any good groups or organisations of support for people with your illness?

Both Heads together and Mind are fabulous organisations that work tirelessly to break the stigma of mental health illness and provide a huge amount of support for all who have experienced or who are struggling with their mental health

What are your goals for the future? 

– Very good question! There’s so much I want to do!  In the next few years we would like to add to our little family and move to our forever home. I want to continue to build on my skills as both a beauty therapist and blogger. I want to work on building my up my confidence and putting myself out there a bit more, meet with friends more, I want to learn something new, be more creative and finally get around to passing my driving test and I really really want to run the London Marathon for mental health awareness!

You can follow Kayleighs blog at :

Instagram
Facebook
Twitter

Thank you Kayleigh for sharing your story with us, Something you said really rang true with me because you said unless you suffer from Mental Health problems you would struggle to understand and this is very true. I find it hard to put myself in the position of someone with mental health problems despite being around somebody who suffers severely everyday.  I still struggle to fully understand things now. Thank you again Kayleigh for speaking to me.

Invisible Illnesses – Laura’s Story – Chronic Crushing Migraines

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people who suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth. Continue reading “Invisible Illnesses – Laura’s Story – Chronic Crushing Migraines”

Invisible Illnesses – Tasha’s Story – Colitis

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

Last week I spoke to Terri who was very brave when she told us all about how living with a mental illness borderline personality disorder affects her life. This week we are talking to Tasha about her condition colitis.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

My name is Tasha. I’m 24. I am engaged to my partner Jamie. We’ve been together for 8 years, engaged for 2 & have 3 beautiful children. Holly (4), Kaytlin (2) & Alice (10 months). I spend the majority of my time at home looking after the children but I do have a part time job (10 hours a week). I love being a stay at home mummy because it gives me the chance to watch my girls grow up. I really enjoy cooking, I find it very theraputic. In my spare time I like to watch the soaps or even a good movie. When I get the chance (or even spare money) I do like to go out & socialise with friends.

What is your invisible illness?

My invisible illness is Colitis. Colitis is basically inflammation of the colon. I spend pretty much every day in pain. It varies from day to day. Some days it is barely noticeable/bearable but other days it can be so bad I find it hard to move. Its not controlled via medication or pain relief. I gave up with going to the doctors because they would throw all different types of medication at me & it doesn’t work. I found my own ways to deal with the pain.

When did you first notice your symptoms?

I first noticed symptoms in 2010. I went to the doctors with tummy pain. They put it down to several different things & kept fobbing me off with all sorts. It wasn’t until I saw a doctor that used to see my mum (who has crohns) when he wanted to look further into my symptoms.

What was it like getting diagnosed?

It was awful getting diagnosed. I went through so many tests & everytime they came back normal it would be a little frustrating. The last examination I had was a colonscopy, which is a small camera up the back end. This was extremely painful but this is what got me my diagnosis. I finally got diagnosed in 2012.

How does it affect your day to day life?

My day to day depends on how my illness plays me up. On days where I can tolorate the pain I can do what people do but only to a limit. On a really bad day I can hardly get out of bed. The pain can stop me doing most things. I have to stick to limits otherwise I end up in too much pain. It can be really frustrating sometimes but I cant sit for too long nor can I stand for too long.

Do people treat you differently because of your illness?

Not very many people know about my illness because Id rather keep it to myself so I dont get treated differently. I dont need people running around after me, id rather do it myself whilst im able to. Even on bad days I still get myself up out of bed & carry on with my day.

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

The only advice I give to anyone with my condition is to know your limits. Pushing yourself too  much only make matters worse. Take things as easy as you can & do ask for help if needed. To anyone who has symptoms I would keep pushing your doctor/GP because once diagnosed you can be treated if the right medication is found. And it saves it progressing.

Do you know of any good groups or organisations of support for people with your illness?

I dont know any groups or organisations  of support because I generally don’t tend to bother with it. I just try to ignore it. Which is probably the worst thing to do.

 What are your goals for the future?

My goals for the future are to live a happy life with my partner & children. I don’t want to let my illness get the better of me. I want to get a full time job & be able to look after my children myself without having to rely on anyone else. I will fight this til the end..!

Thank you Tasha for speaking to me openly about your condition, It must be tricky raising 3 very young children whilst being in pain most days, hopefully by speaking up you will help other mums of young children to realise that they are not alone.

 

 

*warning readers may find some images disturbing* Invisible Illnesses – Terri’s Story – Borderline Personality Disorder

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people who suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

Last week we heard from the incredible Charlie and how she lives her life with crohn’s disease. This week I am talking to Terri and about how she lives her life whilst trying to battle with borderline personality disorder.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

Hey, I’m Terri. I like to think I’m a pretty easy to get on with person, it makes me feel better. I enjoy drawing and reading and writing. I basically enjoy a lot of things that I can just do on my own

What is your invisible illness?

I suffer from BPD, Which is Borderline Personality Disorder.

When did you first notice your symptoms?

There were signs that should have been acknowledged when I was around 13/14 years old and everything really started. But they couldn’t really pick up on it because of me going through puberty as well.

What was it like getting diagnosed?

Kind of a relief? Because I finally had an explanation for the way I was and it meant I was one step closer to finding a way to cope with it and still live my life.

How does it affect your day to day life?

Sometimes I can’t even get out of bed, it keeps me down sometimes and not only do I feel worthless but I have always got suicidal thoughts going through my head, it’s just how I’m wired. No medication can actually stop those thoughts and sometimes it gets on top of me and I just don’t leave my bed. A lot of the time I suffer really bad anxiety so if I manage to get out of bed, I can’t step outside I shake uncontrollably, I start to sweat, I can’t breathe and before I know it BOOM, I’m full on having an attack so I retreat back to my bed then as well, because I feel like a failure.

Do people treat you differently because of your illness?

100% although I’m pretty sure some people are doing it subconsciously, like my family… I don’t actually think anyone wants to treat me like a fragile flower but they also don’t want to be the ones to set me off kind of thing?

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

Get seen, seek professional help asap, not when you’ve already tried to end your life on several different occasions. But when you first start noticing that something isn’t quite right.

Do you know of any good groups or organisations of support for people with your illness?

I wish haha, I tend to vent my stuff on the internet on my blog (which I’ve had to start a new one because I somehow broke my old one oops) So if anyone reads and knows of any internet groups please do tell!

What are your goals for the future?

I want to be a teacher, funny isn’t it? I can’t get out of bed sometimes but my goal in life is actually to be an English teacher someday and teach abroad. I suppose my short-term goals at the moment are to get a better hold on my BPD, make it so it’s actually possible for me to leave the house and get a 9-5 job.

Thank you Terri for sharing your illness with me, not all illnesses are physical and your story shows this. Daddy Giraffe also suffers from Personality Disorder and blogs about it too, get in touch with him as he can direct you to some fantastic support groups.

Invisible Illnesses – Charlie’s Story – Crohn’s Disease * some readers may find images disturbing*

 

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

Last week I spoke to Ar about what life was like living with narcolepsy, This week I talk to Charlie who has been through so much at such a young age and suffers from Crohn’s Disease.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

I’m Charlie. I am a mom of 3, 2 boys and a girl. A step mom to one and nan to a little girl. I’m a palliative care nurse and a wifey.

What is your invisible illness?

I suffer with Crohn’s disease

When did you first notice your symptoms?

I first had symptoms from around the age  of 13  and they intensified the older I got.

What was it like getting diagnosed?

Sadly I was only diagnosed when I presented to A&E with sepsis, I had an operation called a right hemicolectomy which showed heavily diseased bowel. They removed a large section of small and large bowel then joined them together. Sadly the join perforated in 5 days and once again I had sepsis.

I had another open abdominal surgery where an ileostomy formed then a huge abdominal fistula. I spent 5 days in HDU and 14 weeks in hospital. I was commenced on crohn’s infusions

 

How does it affect your day to day life?

I have sadly lost my job and my whole life has changed. I am no longer able to enjoy what I did before & suffer crippling fatigue, bad tummy, sore bones and joints. Those have impacted on me being able to work or enjoy many things I did before.

Do people treat you differently because of your illness?

I find people arent well advised about crohn’s and so believe my disease is just toilet related and therefore people
Cant understand why I feel so bad all the time, that in turn helps me to loose friendships etc

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

I would advise anyone suffering from symptoms of crohn’s to push and push their GP for testing and scans etc before it becomes life or death as it did in my case. Do not be afraid to pester and beg. It could save your life.

Do you know of any good groups or organisations of support for people with your illness?

Purple wings charity & Crohn’s and colitis uk are fantastic sources of support and financial assistance to sufferers.

What are your goals for the future?

My goal is to get into remission and return
To work properly! And to manage a night out and a boogie like I used to love.
Wow! Thank you Charlie for sharing your incredible story and journey with us. I don’t think many of us can begin to imagine how scary that must have been for you but for plenty of other people out there your story will be so similar to their own and they will take great comfort in knowing that they are not alone.

Invisible Illnesses – Ar’s Story – Narcolepsy

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

This week brave and incredible Ar shares with us what it is like living with the neurological condition narcolepsy.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

I’m Ar, I’m 34 (ugh) and have a 4 year old daughter. I’m an artist, writer and teacher. I live up in the North-East and work for myself, running two businesses and a blog, so it’s a bit full on! I’m also an amateur rugby player and am currently working hard on building my physical health up as part of that. I love to write and do design work when I’m not busy running around after my little girl, and I’m a bit of a Twitter addict.

What is your invisible illness?

I have Narcolepsy, which is a rare neurological condition that affects the brain’s ability to regulate the sleep-wake cycle. It’s most commonly understood as a sleep disorder. There are two typical forms.

The first is narcolepsy with cataplexy, which is the involuntary loss of muscle control which leads to sudden bouts of sleep, wherever you might be.

The second is narcolepsy without cataplexy. The symptoms and effects of narcolepsy include disturbed (very fucking disturbed in my case) night-time sleep, excessive daytime sleepiness (EDS) and other neurological issues that occur as a knock-on effect of the condition. Imagine having a sleep-deprivation hangover every day and you’re halfway there.

I have the second form of it, which I feel fortunate about, but that’s not to say I’ve got away with it lightly.

When did you first notice your symptoms?

I didn’t really start to notice things until I was 26. It was a really frightening experience for me, to be honest. I had always had bizarre dreams and a feeling of exhaustion,but I just assumed it was teenage stuff, young adult angst at a push. It peaked about two years into my first job, when I suddenly just hit the wall mentally and physically. I couldn’t get up. I could barely string a coherent sentence together without bursting into tears.

I started seeing things. Horrific, nightmarish vision. Of course, there was nothing there. I began to think I was losing my mind, whilst trying to hold it together in my daily job, being responsible for classes of children. A tired mind plays horrendous tricks on you, and when you don’t know what’s wrong, it’s very easy for people to assume that you’re losing your grip on reality.

What was it like getting diagnosed?

Terrifying. Purely because I was misdiagnosed at first, and spent six months of my life confused out of my mind, thinking I had a serious mental health condition that in truth I didn’t have. My world turned upside down as I took drugs I didn’t need to and basically wrote off an entire year of my life. It didn’t sit right with me though and so I pushed the doctors to send me for a brain scan – to rule out any possible physical cause such as epilepsy, for example. I knew in my gut that I didn’t have a psychiatric issue, and I was frightened about how easily labelled I’d been without any proper test having been carried out.

Eventually I went for the scan and they discovered the anomalies in my brain that the neurologist recognised as signs of narcolepsy. That man changed my life for the better when he assured me he knew what I was actually struggling with. A sleep disorder, NOT a mental health issue. I had to have further tests in hospital, a couple of which were a bit strange, but to be honest I was just so relieved to get an answer that finally made sense, and to get the medication I actually needed to help me recover and live a normal life again.

How does it affect your day to day life?

I take medication twice a day to help me stay awake and alert, and it really works well for me. As I said earlier, I’m lucky to have a milder form of the disorder, it’s a real spectrum condition and some people are really adversely affected by narcolepsy, it really hinders their ability to function. My biggest symptoms that can’t be treated or cured are the dreams/terrors and poor-quality sleep. My brain dreams much more intensely than others, and I can remember everything in vivid, start-to-finish detail. My own ones are particularly upsetting – sometimes I wake up crying, or sometimes I can’t actually wake myself out of it until the dream is complete.  So my body might go to bed, but my brain never fully switches off, so I wake up shattered most days.

I look like a normal person but my eye-bags tell another story!

Do people treat you differently because of your illness?

Not really. Not many people know about or understand narcolepsy that well really in my experience, and it’s not like it’s something people can see. Sometimes, even the people who know I have it forget that I have it, and that can be hard. Sometimes I forget, and then I have a really bad night and the next day is a really tough reminder that it’ll never fully go away. I don’t want to be treated differently anyway really, just a bit of consideration for my tiredness is all that’d be helpful at times.

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

To do your research, talk to your doctors and don’t let them make assumptions. You know your own body and your own mind best of all – don’t be fobbed off with a one size fits all diagnosis if you’re not happy with it.

If you do have a sleep disorder, know that there are more of us than you might think! Narcolepsy is one of the most under-diagnosed conditions in the UK, something that’s estimated to affect about 1 person in 2,500. That means that in the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed. All those people, probably a lot of them just like me – who maybe haven’t the correct level of investigation into their conditions.

Do you know of any good groups or organisations of support for people with your illness?

Narcolepsy UK is a good place to start, and also there are some Facebook groups that aim to support you and your loved ones as you adjust to life with narcolepsy.

What are your goals for the future?

To continue writing and designing and building a success of my businesses, stay healthy and get physically stronger. I’d love to be able travel some more and hopefully one day I’ll be able to take my little girl on adventures to other countries so that she gets to experience the world as fully as possible and not feel restricted by anything.

 Visit Ar’s Blog

you can also find her on Twitter

Thank you so much Ar for sharing your story with me and all of my readers, I can’t imagine what it must be like to suffer with something that must be at times so terrifying.

Gut instinct is very rarely wrong and you was right to disagree with the doctors and their first diagnosis. I hear quite often that the doctors are quick to diagnose one thing and it turns out to be something completely different, it’s a constant reminder that if something doesn’t feel right then you should ask for a second opinion.

Thank you again.