chronic fatigue, disabilities, fatigue, health, healthcare, help, illness, invisible illness, mental health, socialising, struggles, Uncategorized

The feeling of guilt with Chronic Fatigue Syndrome

There are many things that come with having Chronic Fatigue Syndrome but for me the hardest part at the moment is the constant feeling of guilt. It comes in many different ways and to those who don’t have an illness like this will probably not understand. Guilt is a very strong emotion and doesn’t necessarily mean you have done something wrong as it is normally perceived.

It starts with guilt of being unable to participate in things others do, not being busy just having the reason you aren’t well enough. It’s the horrible feeling of having to have a sleep in the middle of your loved ones birthday or not being able to meet your friends with no reason that being in bed instead. It may not just be because you feel ill either. It could be to prevent those symptoms coming, something so hard to explain when people only ever see you when you’re ‘fine’.

However, sometimes I do feel okay. Some days I feel as if I can function quite normally. You would think the only thing that bought me was happiness. Wrong. Also guilt. Guilty that I work part time due to my condition, guilty that people make exceptions and special arrangements for me even though on these days I might be able to do things. These days usually lead me to doing anything and everything I can in order to feel better about myself which in turn leads to me crashing and being right back to hardly getting out of bed. An endless cycle I cannot see the end of.

That leads me to getting upset. I regularly have a few moments where I can’t see how I can carry on with life for all the years to come when I’m only 21. All the hospital referrals. All the support I already require off my family. The feeling of not being the true me. I dream about who and where I would be without this illness and it’s hard to shake that. I know they say don’t cry over the same thing twice but that is not possible when that same thing still hurts as deeply. I feel the guilt of the sadness it must bring on people around me, seeing me upset, dragging them down to. I don’t want to do that. Sometimes I just can’t. I do pick myself; feel better and ready to carry on, just find myself apologising for days about having a wobble as it keeps replaying in my head.

A big thing for me at the moment is that I just started to work. Part-time is all I can manage and that’s tricky enough for me. To colleagues and people who interview me, they see a young girl who just graduated and ask with such confused expression why I would want to work part-time when there is so much I could do. The truth. I dont want to but I’m also happy I am able to do that. I don’t want to explain myself to everyone and say actually I’m poorly and I’m not supposed to work at all. I want to keep that persona of the young, healthy girl who works hard but at the same time I crave understanding from everyone around me. I feel guilty for getting mad at people saying things. I feel guilty at myself for not explaining things to people. It’s just so hard to open up when most people I have spoke to in the past really don’t take anything on board…

So that’s at work but then there comes the guilt of not working full time as I dont earn as much money. I don’t bring as much to the table. I have 4 days off a week while everyone else works so hard and I’m still the one getting looked after by everyone. It’s just unfair.

So there you have it. A few aspect of guilt that comes with my illness – Chronic Fatigue Syndrome. The illness that rules most of my life. The illness that brings the strongest emotions. Guilt being a main one.

Hope you enjoyed reading. Would love to hear if anyone feels the same or has any advice for people who feel this way.

Chloe x

#FND, #NEAD, awareness, chronic fatigue, disabilities, fatigue, help, illness, invisible illness, seizures, support, Uncategorized

Don’t judge a book by its cover…invisible disabilities

Yesterday, I went to a bowling alley. I went to the toilet and the disabled toilet had a sign on that said “not all disabilities are visible”.

This made me very positive that people were finally realising this and it’s time the general public did. There are many times I have not used services available to me due to the fear of being judged. This includes being judged by other disabled people as well as those who are able.

Firstly disabled toilets. People always get mad when they see someone using a toilet that doesn’t appear disabled. If they arent in a wheel chair or something along those lines the funny looks you get are horrendous – especially if there is someone waiting for the toilet that is clearly visibly disabled.

They are many reasons for using a disabled toilet. For me all though not strictly using the toilet they tend to be my only safe place for seizures as they are a larger area and until I can find an alternative this is my only option.

Secondly there is the issue of using the lift. This becomes most apparent for me at university. Due to my chronic Fatigue Syndrome stairs are a killer and are actually the most tiring part of going to a uni lecture. It may only be one flight but using the lift would help me retain so much more energy.

However I don’t use the lift. Never. For one there is signs everywhere about using the stairs to get fit and be healthy, don’t be lazy etc… I understand what they’re trying to achieve but it’s very demoralising on my part. Secondly my friends roll their eyes and call anyone lazy that uses the lift for any less than 4 floors.

Finally, there is when you’re in the lift. The death stares, tutting and whispering about how annoying it is that you took the lift just for 1 or 2 floors. How dare I? If I was in a wheel chair or on crutches there would be no question about the use of the lift and people would be fine with it. It adds about 3 seconds onto their lift time but they get so angry about it.

People don’t understand things are not always as they seem. They don’t think. However I dont think many people are educated about the term disabled as it is always associated with a wheel chair. I have just as much right to use disabled facilities as them yet I do not due to the fear of being judged and looked down on…

It’s definitely something wrong in society.

NOT ALL DISABILITIES ARE VISIBLE

Everyone should be aware of this.

So next time you see someone using a lift, dont call them lazy. If someone goes in tbe disabled toilet, don’t question it (unless they make it obvious they’re using it for convenience so they dont have to queue for example).

Just be mindful. You never know someones situation.

Thanks for reading and please share.

Chloe

awareness, chronic fatigue, doctors, fatigue, health, healthcare, help, illness, mental health, support

5 Things I wish people knew about Chromic Fatigue Syndrome…

I have had ME/CFS for quite a long time now and it is an illness people find very difficult to understand and fully believe sometimes.

Some people have it very severe and can even become bed bound which shows how real it is. For someone like me who is not as severe as this and can carry out normal activities to an extent it’s quite invisible and people disregard that I am ill.

So I came up with some things I wish people knew about CFS and how it effects my life.

1. It is not just ‘feeling tired’

Everyone gets tired and I feel this ‘normal’ kind of tired too but fatigue is so different. It can be described as being tired but it is much more than that. It is disabling. Your whole body hurts as if you have the flu and you just cannot function. You can have physical fatigue where your body runs out of steam but still be able to use your brain. Or you could have mental fatigue where having a simple conversation can be too much for you. When you have both it’s the worst. There is not much you can do but sleep and that doesn’t always help.

2. Just because I can do something one day does not mean I can do it the next

Just like anything I have good days and bad days. Good days I may be able to go a walk or do a full day at work/uni or even go swimming. This does not mean I can do it all the time. Some days it hurts to brush my teeth. My abilities vary and I must listen to my body or every day could become a bad day. I am not just deciding what I can do each day, how much I can be bothered, it’s what I am physically and mentally able to do.

3. I do not want this, I do not want to stay in bed

Growing up I was extremely energetic, playing any sport going. I was never a lazy person, I have always wanted to try anything and everything to the best of my ability. That got taken away from me. I only have to look at an old photo of me dancing or just looking well and I cannot help but cry. I just prayer one day I can get that me back, however I’m not too hopeful.

4. Doctors are pretty useless

I have been going to the doctor for years and years with this and am still yet to gain any help. I was once referred to the chronic fatigue clinic but was discharged due to uncertainty and not being ‘bad enough’. Instead of helping me they let me get worse and worse. Brilliant. I have since found there is many blood tests they should have been monitoring which has not happened. I am at the point of having a seizure after most doctors appointments (I also have NEAD) and have lost my faith that they could help me.

5. There are a lot of other symptoms

Although fatigue is the main symptom for me that I really struggle with, there is also many other things. I have restless legs, pains in my legs and hips. Stomach problems, shaking, dizziness, sensory sensitivity and headaches to contend with. So even when I am relatively awake there is always something bothering me.

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It’s an illness which still has very little help and understanding and it’s very hard to get those around you to understand. It has completely changed my life and who am I able to be and become in the future so is a big deal to me. These are the main things I wish people knew, remembered and considered when they are told about my CFS.

Thank you for reading

Chloe

#FND, #NEAD, awareness, doctors, health, healthcare, illness, seizures, struggles, Uncategorized

FND Awareness day 2019

It’s FND Awareness day today! The purpose of today is to spread awareness of FND (Functional Neurological Disorder) and NEAD (Non-Epileptic Attack Disorder). Also to share the love for patients of these disorders and their carers.

There are many symptoms of FND, many resemble those of MS or epilepsy but are not caused in the same way – they are caused by a problem with the functioning of the nervous system rather than a disease of the nervous system.

I myself which you will know if you read my blog, suffer with NEAD or also can be called dissociative seizures. 

It can be a very disabling condition and has been so difficult for me to deal with the past few years especially as it is so unknown about. It took me years to get diagnosed and even then there is still little support you can receive. Almost every medical professional I have encountered did not know what NEAD was. It can be very isolating.

The seizures began for me in my second year of college (around the age of 17). I am now 21 and finally I can say I can deal with diagnosis. I’m not afraid to tell people about it even though unfortunately a very minor percentage of my family still act as if it is a taboo subject. That doesn’t matter though…

What matters is that I do all I can to help support others with NEAD and spread my experiences, making it a more widely known illness.

I wrote a post in the past about what happens to me during a seizure which you can read below.

https://livingwithneadandchronicfatiguecom.home.blog/2018/12/19/what-happens-to-me-during-seizure/

Help to spread awareness by the hashtag #WeCare4FND and please share this post also. I will be available all day on my twitter to answer any questions you may have or any advice you need.

Twitter: @ChloeNead

Thank you for reading and do your part to spread awareness today!

Chloe

 

 

 

#NEAD, anxiety, awareness, doctors, healthcare, help, Uncategorized

Non-Epileptic Attack Disorder – Lost in the system

Recently I have been attending many doctors’ appointments for other things as well as my seizures and it has become so apparent to me how little the professionals in healthcare actually know of this disorder. This in turn translates to the public as so many have never heard of NEAD (I hadn’t myself until I was diagnosed).

I have had 3 specific encounters in the past couple of weeks that made me realise this.

The first being during a GP appointment. Unfortunately, I actually had a seizure during the consultation which has not happened to me before. I believe this was due to the stress of the appointment as I was being told I may have something quite serious (later when seeing another GP was told this could not be the case at all). She tried very hard to tell me I needed to go to hospital as I could have blocked airways. It is commonly known amongst people with NEAD that unless you have injured yourself, medical attention is not necessary. She just generally did not know what to do. She then went on to ask if I was seeing someone at the hospital for this. I don’t think she could comprehend I was so okay with just having a seizure. That’s what us with NEAD have to deal with, our seizures have to become ‘the norm’ because there is so little understanding and treatment.

The second was with a different GP following up from the previous encounter. Their comments to me were ‘if you are having seizures why aren’t you taking epilepsy medication’. Possibly because it is not epilepsy. There seems to be a huge stigma that the only seizure disorder is epilepsy and any person having a seizure must fall into this category. How very wrong. When telling them what my diagnosis was the sheer look of confusion on their face said it all. As if, I had completely made it up. He also mentioned it had been a discussion between GP’s in the staff room that a patient had had a seizure in a consultation, so it must have baffled everybody. The questions being asked made it feel like I had created a disorder and diagnosed myself with it.

The latest appointment I had was with a nurse. I was asking about contraception and if there was any way the hormones could make seizures worse (I have noticed a pattern myself for around a year now). She quickly preceded to tell me I needed to see another nurse as she knew nothing about these kinds of seizures. What’s new? Rather then even trying to learn about what they were I was just passed to the next – lets just hope they know something.

She asked me to repeat the name of the disorder many times – clearly something she had never heard of before and the response was ‘that’s what they’re calling them is it?’. Yes, they are calling them that. They are that and it is a disorder that many people live with. It is not something they just say when they can’t think of anything else as we don’t fit into the usual boxes.

Her final question was ‘is it like really, really rare then?’

No. Around 15,000 people in the UK alone suffer with this condition and it is thought the number is much higher as many people are misdiagnosed. Approximately 4 out 10 people who have regular seizures are found to have NEAD.

As you can see from these statistics it really is something that should be known about by healthcare professionals. At least to know that it exists and is very real.

Through the means of this blog and using my voice I really want to make this change. It would help so many others not just once they know they have NEAD but also speed up the process to be diagnosed which can take so many years and potentially never happen for some people.

So, please share this and help me spread awareness.

If you would like to read more on NEAD (Non-Epileptic Attack Disorder) I have provided some links to helpful websites below:

http://www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/dissociative-disorders/nead/#.XIJf9yj7TIU

https://www.fndaction.org.uk/non-epileptic-attack-disorder/

I also recommend this amazing documentary which follows the lives of people with NEAD.

https://www.youtube.com/watch?v=MA1EYAg9y5k

Thanks for Reading!

Chloe

anxiety, awareness, health, illness, seizures, socialising, struggles, support, Uncategorized

Having a non-epileptic seizure in public

There are many issues I worry about when it comes to having a seizure. I find when I go out (especially to new places) I find my brain consumed with thoughts of ‘what if I have a seizure now?’. It can make you feel very anxious and unsafe.

People try to come up with solutions to all the questions that run through my head and I have figured some solutions out myself. Although when I say solutions they are not ideal but at least keep me safe (ish).

I thought in this post I would talk through some of my thoughts and issues that occur when I am in a public place such as a bar, restaurant or shopping centre and what current things I do to attempt to combat these.

First off, my first thought is where can I go…

I find myself looking around for quiet corners, places to sit and empty rooms.  These things are very hard to come by when you’re out and about so the first thing I do when I arrive anywhere is make sure I know where the toilet is. As horrible as it is, the best place always appears to be a toilet cubicle. One thing I wish about toilets is that the toilet seats had lids, so I could sit down. Something many people probably don’t think about at all but a lid to sit on in a toilet stops me having to have a seizure on a gross toilet floor making it at least slightly more bearable.

This is actually something I have discussed with my university as even the mentors and wellbeing decided the toilet cubicle was the best option for a quiet place on my own. No one can come up with a reason why there is no lid. The only reason I can think of is cost cutting which is the reason for most things these days. It has also been considered that a lid be put on the disabled toilet near my lecturer rooms (although this never actually happened – shock!). This made me wonder if there is a reason that a disabled toilet does not have lids on the seats as for disabled people like me who do have such an obvious disability, this could be great. So, if anyone knows if there is a reason, please let me know!

Secondly, it’s how will people react.

A classic for someone with anxiety. I find unless I am with someone that knows me very well (basically my family and a select few others) the reaction of others can make my seizure 10 times worse. This not just during but afterwards as well as many people are extremely upset and scared by it which then makes me feel guilty.

I feel that people should be a lot more educated on seizures and what to do if someone has one around them. I have found people are a lot more clued up with epileptic seizures (protect the head etc…) but when it comes to NEAD people are a lot more confused. The amount of times people have tried to give me water is unbelievable. For one if I held it, it would be chucked everywhere due to my spasming, stiff hands and two I would probably choke. Of course, I do not blame these people, they’re simply trying to help. I recently had a seizure in my doctors’ consultation and she was the most confused I have ever seen a witness. Again, offering me water…and then trying to send me to hospital which is just a waste of time. She really had no clue about what a diagnosis of NEAD meant at all. If your GP can’t understand there is no hope really is there.

I have a card that has been developed by professionals in this area instructing people what to do if they see me having a seizure. This is definitely a step in the right direction, but my problem is that no member of the public is likely to think ‘oh I bet they have an instruction card in their purse’. The alternative is to wear it on a lanyard round your neck, but I don’t fancy displaying it to the world all the time.

I think the best idea with this kind of thing is the medical bracelets you can get. They are visible to the eye without searching and can be accessed quickly. I really need to get one of those. I feel for this to be even more effective the symbol showing it is a medical bracelet needs to be more widely spread creating awareness of what the symbol means. I personally had no idea until I needed one for myself and researched it.

And the final thing… who do I tell?

Who do I tell? Do I tell anyone? I should tell someone, but I don’t want it to ruin their time as well as mine. I don’t want to be a burden. I could just deal with it myself but that’s not safe and will make it last longer. Will they mind? Will it scare them? What do I do…? There is no one here that knows about my seizures.

Just some thoughts that run through my mind. It can be very difficult but this for me is probably the easiest problem to combat. Whenever I go out somewhere I make sure one person knows about my seizures and what to do if I have one. I am not a very outgoing person so it’s very rare I will be going out with someone completely new anyway. I do tend to find myself inviting my boyfriend or close friend along to events too (this makes it so much more enjoyable and I can feel relaxed). I think once you have accepted you have seizures, it is a lot easier to tell people about them. I also have a kind of speech that I always use that is a simple clear way to explain my condition without talking at them for hours. For example, for me I say something like “I have seizures like epilepsy except I am not unconscious. Just stay with me and reassure me as I can hear you even though I cannot respond”.

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So, there are my three main struggles when it comes to seizures in public. I’m sure many of you reading this will relate. Or perhaps if you know someone with NEAD; consider they may be worrying about these things and reassure them you are there for them if anything happens. Also, a quick research on what to do in that situation won’t hurt (you just have to ask). The interest and wanting to help will be greatly appreciated and even by reducing stress of public places could lower the chance of a seizure in itself.

Thank you for reading!

Chloe

anxiety, chronic fatigue, fatigue, health, help, illness, mental health, socialising, struggles, support

The struggles of socialising when you have ME/CFS…

More and more lately I am finding Chronic Fatigue Syndrome (CFS) such a hard thing to cope with. Especially when it comes to seeing my friends, and just generally going anywhere with other people. The most frustrating thing is that I must put so much of my energy into my compulsory daily life (university and work mostly) that I have nothing left to do the things I want to do. But then where does that leave me? Down in the dumps. I want to enjoy life. Therefore, I do try to force myself to do things but there are many struggles that come with this. I’m going to talk you through some of these in this post. If you don’t relate yourself then perhaps you know someone else with CFS and taking these struggles into consideration may help them greatly – even just knowing you have tried to understand would mean a lot I’m sure.

So here goes…

Saying ‘no’ to things

It is so hard to say no to social events when you really really really want to go but just know it will be too much for you.

Telling them no is of course hard – especially when they ask why and you have to make up something because they won’t understand if you say it will be too overwhelming and make you tired. Just sounds like you’re telling them you don’t want to go. But you do. You really do.

People don’t understand that simply going out with a group of people for a meal for example could knock you out for a week.

Not only is telling people no hard but accepting you have to say no is just as much of a battle. Having to turn down fun things because it will make you ill. Or even if you feel fine at time still having to say no so you can make it through work or uni the next day.

It can get very disheartening and make you very down. Of course, I don’t always say no but there is so much more I would say yes to if I didn’t have this terrible fatigue.

Missing out on things so often your reasons are no longer believed

I guess this is similar to the previous, there is only so many times you can tell someone you’re ill or too tired. People begin to not believe you and just stop inviting you making you feel even more isolated. I don’t always want to explain to everyone around me the depths of my illness yet at what point do I have to? Then if I do, how do I get them to understand? Even when most people know about my condition they still can not accept feeling tired or having no energy as a proper explanation after all everyone gets tired don’t they…

Going home early because you are tired

For me this is most apparent on nights out. Staying out until 3am? Not a good idea. I occasionally may do this, but I can tell you the lasting effect is not nice to deal with. It is so hard to tell people you want to go home not just because you need to but because it tends to cut their night short too. This means your CFS is not only affecting you but also ruining other people’s nights. They may not feel like this, but it sure feels like it.

Explaining CFS mid-socialising

This comes in with telling someone you can’t do something whilst out. For example, walking from one place to another. This is a no go as will leave you with no energy once you get there.

Want to avoid being treated as lazy, unfit etc…? well then you must explain the ins and outs of your illness and then they might just might understand – although I can’t promise that.

Needing breaks

This is a strange one, but I often find myself going to the toilet frequently (not always to use the toilet). For the past few years places like a toilet cubicle have become my best friend. My sensitivity to light and noises increases when I am tired and can become quite intense. Just the few minutes to myself in a toilet can really help. Definitely not something I want to be doing as it’s not the nicest of places to spend your time, but you find yourself doing whatever to be able to go out to places and spend time with people.

Yawning

Finally yawning. The easiest way to make people think you do not want to be spending time with them. You just can’t help it. You can’t stop it, but you do want to be there, and you really are trying to look as interested as you are on the inside.

Also, something that doesn’t help is phrases like ’wake up’ or ‘have a power nap’ if it was as easy as that don’t you think I would have done that by now. It’s a lot more complicated.

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I don’t want it to sound like the people around me are all horrible. That is not the case. It is really the lack of understanding some people have and that I don’t know how to get them to understand. Of course, my family, boyfriend and a few friends are really good. I’m also sure that is some people knew the things they were saying or how they were acting makes it so hard for me they would be so upset. Chronic Fatigue Syndrome is just a hard, complicated frustrating illness that impacts every aspect of your life.

All I ask is if you notice any of these behaviours in someone around you, you ask how they really are. Give them the chance to explain to you properly and try your hardest to understand and be supportive. That’s all we can ask for.

Thank you for reading.

Chloe