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My current struggle with Chronic Fatigue Syndrome/ME

Chloe

To the outside world and even those close to me, it may look like I completely have my life together. I have my own house, a job, a loving partner and family. However all is not as it seems.

Yes I am very lucky and grateful to have these things but you don’t see me behind the scenes. Chronic fatigue isn’t just ‘feeling tired’. It is feeling so exhausted that you feel you cannot function. All you want to do is sleep but sleep isn’t refreshing. That’s if you can get to sleep in the first place. The crashes that come bring physical symptoms that can make it so difficult to sleep, even when you really need it most. Personally I struggle with right sided chronic pain, headaches, nausea, digestive issues, restless legs, burning feet, and hot flushes to name a few. It basically feels like you are living with constant flu. However I can’t sit in bed and rest for a few weeks and all become better again like the flu. I have to life life whilst feeling like that and also accept the fact it is never going to change.

Acceptance.

That is a word that I keep coming back to. It is what I really feel I need to do in order to be happy and to live a positive life. I need to accept that I have this condition to live with and adjust my life to suit it. But I don’t want to. Why would I want to? I don’t to accept it, I want to find out why it happened, what is causing it? Can I do anything to make it better?

Unfortunately with a condition like this, you will never find those answers. It is a condition diagnosed by process of elimination; they can’t find any other diagnosis so you are left with CFS/ME. How can this be? Health professionals constantly telling me they can’t find anything wrong yet I continue to feel the way I do? There MUST be something wrong. No matter how hard I try, I never get any helpful conversations regarding this and I end up feeling more helpless than I did before. I begin to question whether the whole thing is even real. Am I doing this to myself? Is it in my head? Am I just used to doing nothing so I can’t do anything?

This every so often brings me to conduct my own silly experiment… I tell myself that this next 2 weeks I will live as if the condition wasn’t real. I will do everything I would normally want to do and see…

Guess what… It is so real. It always ends up with my symptoms being 10 times worse and leaves me in a mess. Even though I have done this experiment and proved to myself that it is not all in my head you can guarantee you will find me doing the same thing in a few months time just to prove to myself once again.

It isn’t just about proving it to myself either, I think it is me trying to show other people, ‘look, I am not lying, it is not an excuse’. This brings me back to the first thing I mentioned of having my life together. Yes I have a job, but you don’t see what I sacrifice to be able to do that job. Yes I walk my dog, but you don’t feel the pain of my feet, legs and back all night and day. You may be confused that I say no to some things but not others and that is because you don’t know what else I have to do that day…it might even just that I need to do the washing but for me that’s is all the energy I have used up. I completely get why it would be hard for people to understand as they only see me when I am well. But that is the point really. You only see me when I am well, because I would never arrange to see anyone on a day where I wouldn’t be well or I know I need to rest.

Not only do I have these physical battles to deal with but the effect it has on my mental health is one of the hardest things about it. I have recently been told that was am I going through is basically grief. Except I am grieving myself. Anyone who knew me as a child and young person knew that I was the most active, sporty person who wanted to do everything. I am such a determined person and had always exceeded in so many things so for that to all be taken away from you is something so hard to deal with. I can’t do any exercise. I struggle to even hoover my house. I can’t do what I want to do and what I was actually good at! I can’t have the release of going to the gym, for a run or taking a dance class. Some days it hurts to even brush my teeth.

Not only is that side of me taken away but also my social life. Even though I have always been labelled a quiet person, I have always wanted to socialise with people. It makes me happy, as it does most people. That is something that has to be the bottom of the list for me. Imagine being invited on a night out like so many people my age. What goes through the average mind? Am I free? Simple yes, or no. Do I want to go? Simple yes, or no.

My mind however? What else do I have do to that day, is it too close to a work day? Will I have be able to take a nap before? Will I be able to sleep all day the day after? Will there be walking involved? How long will the crash after be? These are just a few things I must consider and to be honest you have a lose, lose situation. You go and feel so ill after or you don’t go and feel mentally so down as you’re sat at home doing nothing. It is a constant battle.

I know that I can be hard on myself and should be proud of what I have managed to achieve even with such an obstacle in the way but instead it leaves me wondering what I could have done without that obstacle. I had huge dreams. Even though at the time I didn’t realise I was capable of those dreams, I really now believe I was and it kills me to know I will never get to make those thinks happen.

To some of you, you may think that I have no right to complain and I do have so many good aspects in my life and perhaps I should just be grateful for those. Believe me, I try to do that every day…It’s just not that simple. I am so fed up of the physical and mental battle that I have to go through every day just to do simple normal things. Its frustrating and I just don’t know how to live with this hanging over me.

I am working on it and I know it will be a long journey but I hope this makes people realise how disabling and draining an illness like this can be. I don’t want sympathy. I just would like people to try to understand that not is all as it seems and that if someone tells you they have this condition or any other invisible illness like it, it is not to be taken likely.

In the process of gaining this diagnosis, I really lost myself and now I have to find a new me…

#NEAD, anxiety, awareness, mental health, panic, struggles, Uncategorized

Panic and it’s lasting effects

Chloe

So as some of you may have read in my pervious blogs, panic attacks used to be an everyday thing for me (literally) but once my non-epileptic seizures began, these seemed to tail off.  For the first time in I would say maybe even a couple of years, last week I experienced an episode of pure panic once again. In and out of panic attacks, and such extreme anxiousness. I had forgotten to a certain extent just how bad this felt.

So, let me first explain what happened… I had gone to a hospital appointment by myself – this is something in the past I never thought I would be able to do. I drove there. I am quite a nervous driver as it is and this day, I was extra nervy as it was very busy and there were multiple sirens and flashing lights to move out the way for. Next was the actual appointment. This was a monthly session I have with an occupational therapist which is supposed to help me learn how to cope and manage my chronic fatigue syndrome. Every appointment like this I find hard. Talking about myself and how I need to live my life to stay being able to actually have some kind of a life. It’s not the life I pictured for myself and I really have a hard time accepting that it’s just the way it is now. Anyway…that’s another story. 

After the session, I go to pay for my car parking ticket. A simple thing you might think. Well it would be if the machine accepted my card (there was more than enough money in my account so there was no reason it wouldn’t). Well, it didn’t. Not only that but the machine also didn’t take cash.

And that’s when I felt it coming.

This was the final straw for me that day and all I felt was sheer terror. All my mind was saying to me was “get to a safe place now…now…NOW”. So, I walked as quickly as I could to my car got in and locked all the doors. It’s not like I wasn’t safe before but your mind is not in a state to be rational. I remember once in my car, I saw a lady sat in the car next to me on her phone. Oh no. More panic. A person? No. They can’t see me cry. What if they see me? They might think I’m crazy or WORSE… she might actually try and help. There’s no logic, right? It’s like everyone is suddenly an enemy. I just wanted the world to swallow me up there and then. I turn my head away from the lady so she can’t see me crying and hyperventilating.

Then I remember another issue. Am I going to have a seizure?  I most definitely can’t have one of those. Again, my thought’s spiral running round and round all out of proportion. I imagine her seeing me, breaking into my car to get to me as I locked the doors previously. I picture her pulling me out the car, getting more people possibly even taking me into the hospital. This just can’t happen. This would be terrible.

None of this is actually happening of course, I’m not even having a seizure. The thing is that I COULD.

In this moment I felt so alone. I felt like there was no way this was going to end and I was going to stay here distraught forever. The breathlessness makes things go a little hazy and blurry and it just feels awful. So awful. So scared and for what? Absolutely no reason. I can see that now anyway. I rang my mum and I’m so lucky that she was around. She drove to me and talked to me on the phone the whole way.  I eventually got out my car and walked to hers. This was not easy as I was still crying and panicking and could feel a thousand eyes on me even though actually no was looking at me at all. I was quite hysterical and pulled my jacket up around my face with my head down just trying to shield myself from everything. I think I closed my eyes at some points too.

I finally began to calm down once in the presence of my mum. She knows exactly what to do when I’m in a state like that. Clearly, she hadn’t forgotten how these episodes go even if it felt like it was the first time it had happened to me. She’s amazing.

It felt so traumatic. I know to some reading this is may seem extremely silly and dramatic but it was very real for me. Not only in the moment was it so horrible but it’s really knocked me up. I never really thought this kind of thing would happen anymore, although I am still always going to be an anxious person, I do so much more independently now. Things I could have never seen myself being able to do a couple years ago. But now, it’s reminded me what could happen if I go out alone or I get stressed in public etc… It’s so scary. It makes me question my every move. It makes me not want to go out. I’m back to taking people to appointments with me. All the what if’s build and build and when before I could shake them; I now can’t. I could calm myself to not believe them however, since last week this has become harder… I just feel stressed and scared. The feelings and thoughts creep up when you least expect and they are so hard to explain to people.

I’m not too sure what really was my aim for writing this but I guess I felt I had to get it off my chest. Also, for anyone else who get’s like this. I guess I’m proof you aren’t alone.

If you have read this then thank you and I am always here for anyone who needs to talk.

Chloe x

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

The feeling of guilt with Chronic Fatigue Syndrome

Chloe

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

Chloe

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…

Chloe

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

Chloe

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

Chloe

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

Chloe

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…

Chloe

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

 

anxiety, awareness, chronic fatigue, college, health, mental health, school, seizures, support, Uncategorized, university

Help you can get from Uni and College!

Chloe

There is a lot of things available out there for those with disabilities – many of which people are unaware of when starting their studies.

For me I had no help at college until second year as I got to crisis point and for uni also no help until end of second year due to purely not knowing what was out there.

College was mainly help for anxiety and fatigue while uni now is also for my NEAD seizures.

Starting with college…

This is a lot easier to access as it provided by the college itself but also means it may vary from college to college. You can also ask though, no harm in that! The following are some of the helpful things they did for me which you could request or look into for yourself…

1. The biggest help for me; they changed my timetable.

It may sound strange but free periods were horrible for me. I found them tiring and a big trigger for anxiety as I was mainly on my own. There was no where to sit where there wasn’t crowds of people and I was too anxious to go into the library. I managed to change my lessons around so it was in blocks and was only at college 2.5 days a week. This also helped with my fatigue.

2. Scheduled study periods

Any free periods that were left, they scheduled me into a study room with others who needed extra help or I guess may have been in a similar situation to me. It was boring and I didn’t enjoy it but I felt safe and secure.

3. Regular meetings

I regularly saw my form tutor when normally you would only see them a couple of times each term. It meant she knew me on a personal basis and could keep check of any struggles I had or anything I needed. I also had a lot of contact with the head of the college. She frequently emailed my mum and was very quick with responses to queries.

4. Notes on the register

This was something so amazing for me as the whole way through my school life being picked on to answer questions in class scared me to death. My anxiety would be so high the whole lesson just in case I got asked. I learnt a flag could be put on the register by my name to say not to put me on the spot and if I was going to have to talk then warning would be put in place. This was a big comfort and made class easier making me able to concentrate on actually learning.

Onto University…

This is slightly more complicated as you have to go through assessments for DSA with evidence from your doctor on your conditions and struggles etc… Obviously what you are entitled to will depend on your disability.

I would seriously recommend looking into this as soon as you start uni to get the process rolling and you can get support as soon as possible!

My support is for NEAD, CFS, Anxiety and Depression so if you have any of these then some of the following may be available to you.

1. Specialist Mentor

I have a specialist mental health mentor which I see for 1 hour once a week and can have up to 2 hours if I wish. You can discuss anything not just uni. However primarily uni is the focus as that is what they can try to help with. I find this such a huge support and relief to have someone to talk to each week. They will be trained in the area you need which also helps them give you advice and point you to any other people that can help.

2. Laptop with specialist software

I was given a laptop by the government (I paid £200 and they paid the rest) as mine didn’t have a good enough processor for the software I needed.

To help with my fatigue and concentration I have mind mapping software and also a read and write software. It can turn mind maps into essays and even read text out loud to me. Reading is a struggle for me as I can’t take it all in.

3. Transport

Due to NEAD I lost my drivers license. I also won’t use the buses due to seizures and anxiety. Therefore I have taxis at the rate of what a bus would cost me. I pay £2.15 each way when it would be around £15 normally. You can use it to and from uni only but will get to every lecture.

4. Support plan

You will have a support plan put in place. Mine includes things such as; leaving lectures if needed, may be late, alternative assessments to presentations, week longer on deadlines and a procedure in place for if I have a seizure. This will be very personalised to your needs.

5. Quiet rooms

I have been shown around all the quiet rooms in uni for if I feel I am going to have a seizure as I know they’re coming on. These are places like the medical room, offices and the multi faith centre.

Something I would say is that it is hard to get a quiet place when you are on a high floor in the building. I usually end up in a toilet cubicle but we haven’t been able to find an alternative to this as of yet.

6. Medical number

There should be an emergency first aid number you can call if you need someone (for example after a seziure). Make sure you ask for this as soon as you begin uni.

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I hope this post makes some of you aware of the help available to you. I had no idea and reading something like this may have enabled me to receive help a lot sooner and make my experiences a lot easier.

Please share any other things you have and any tipsfor getting help! I will also be happy to answer any questions😊.

Thanks for reading.

Chloe