Monday, 4 January 2016

Invisible Illness





Chronic Fatigue is an Invisible illness.

It is not the only one, for example, migraines, arthritis, depression, anxiety, digestive disorders and diabetes. People with these types of chronic conditions can look perfectly normal when on the inside they could be really suffering.

I have spoken about this frequently with other people as it can be one of the most frustrating parts of being unwell. No one obviously would want to look ill but it would make it easier for people to understand that you genuinely have an illness and could be in pain even if on the outside you look fine.

If you had been in an accident and broken a leg for instance; it is very obvious to other people that you might need help and understanding from those around you. For example, when I get on a bus and there is no seats free, No one is going to get up to give me there seat when I look like a healthy 24 year old. The reality is that standing up for more than 10 minutes is really difficult for me. I could try and ask someone for a seat and explain to them I have CFS but I don't think they would see me as being chronically ill.

A problem that I personally have when I got out in public is that I start to feel anxious because I feel like people are looking at me and they can tell I'm not feeling well. Which is actually irrational since if anyone does look at me they probably see a normal girl. It's a battle I have with myself one the one hand wanting to feel Invisible and not draw attention. On the other wanting more understanding from other people that I am genuinely ill.

Having an Invisible illness such as CFS can especially can get a negative reaction from even health professionals. When I first became ill every doctor I saw couldn't seem to care less by how terrible I felt because all the tests came back fine. I eventually changed surgeries and found a new doctor who is very understanding. It's so important to feel like your not crazy and to have someone else confirm how you feel.

It can also be very difficult for friends, family and work colleagues to understand how your feeling when you still look the same. In the beginning I dealt with a lot of negative reactions from a lot of people. Telling me I'm just depressed! I've actually lost friends because of this. They didn't want to take the time to understand what I was going through. Even now, my sister still can be insensitive and call me lazy. On the whole though, my friends and family have started to take the time to really listen to me and research more about CFS which has made a huge difference to me now I feel supported.

Unless you'd go through something similar then its really hard to relate to someone with an Invisible illness. Other people can still do there best to understand what your going through and be supportive. We don't need people to put us down telling us "its all in our head" , "take antidepressants", " your just lazy", " be more positive ". Come on! Try put yourself in that position where you feel the worst you have ever felt every day.
Instead things you should say are " is there anything I can do to help?", "I'm here whenever you need me", " I'm so sorry your going through this".

I think it's important that everyone takes the time not to judge others or wish they were more like someone else. Instead realise that the guy sitting next to you on the bus could be dealing with a chronic illness and to be more caring and understanding towards other people. You never know when you might be in a similar situation and wish someone would show you some kindness.



Sunday, 3 January 2016

What is CFS / My Symptoms

 
Chronic fatigue syndrome can also be referred to as M.E (myalgic encephalomyelitis)
CFS/M.E causes persistent fatigue that affects everyday life and doesn't go away with sleep or rest. It is an illness which affects a persons nervous system. CFS is a complex illness which can be suddenly triggered by a viral infection or can slowly develop over time. No one really knows what causes it.
I honestly thought there must be something seriously wrong me feel to feel this unwell. I have had a lot of blood tests done, an MRI, a heart monitor and an endoscopy. I have seen a general specialist, a ENT twice and a neurologist. When all the tests were coming back fine I actually felt disappointed. Which is horrible to want there to be something wrong with you. The thing is, not knowing what was wrong was even worse to deal with. How can you and others around you accept your actually really ill when there's no medical proof. I had all these symptoms and no answers. It wasn't until I dug deeper into CFS the dots started to connect and I found that my symptoms fit and my GP agreed.
It is not a straightforward illness with a cure, and it affects people differently. How I experience it could be similar or very different to you. As well as fatigue, other general features of CFS are:
•it lasts for 6 months or more
•it isn't caused by another medical condition
•it is not due to constant exertion
•it is not relieved by rest
•disrupts the patients normal life and stops them from functioning
Everyday I feel like crap to put it plainly. I'm exhausted from the minute I wake up in the morning and for the rest of the day I have very little energy. I go for 2/3 short 10 minute walks a day just now but that's about all I can manage. Everyday I have a headache which can get worse and develop into a migraine occasionally. Some people describe having brain fog. For me I feel quit dizzy and there a lot of pressure in my head. My vision is also affected. I feel like I am not seeing in HD and everything's out of focus. It may be because of the dizziness but I also feel nauseous and have to take sickness pills everyday otherwise I probably will vomit. 

I have noticed is that my senses are more heightened. Mainly I am very sensitive towards sounds. If I am somewhere in public the sounds around start getting louder and louder and its the feeling you get like nails on a chalkboard. I also can't regulate my temperature very well I get hot very easily even when other people are freezing, to the annoyance of my family as I hate the heating being on. I also get really bad pains in my neck, shoulders and back everyday. Before I got CFS I had problems with IBS and they have gotten worse now, I've recently been getting heartburn and acid which has been so horrible. Another symptom which is quite a scary one is that I can get chest pains and flutters. The doctor says it is post viral inflamation. I have found that if I don't eat every few hours I feel lightheaded and shaky and my heartrate goes up. It's as if I have low blood sugar but my blood sugar is fine. Haven't found any explanation for this yet, it could just be me that experiences it.

Worth mentioning that I can have difficulty concentrating after a while. When I am reading/writing, after 20 minutes normally I have to stop. I know I am not the best writer but I enjoy it and I might forget what I am trying to say half way through a post but I hope it is still ok for you guys reading it.
Something I haven't mentioned yet is that I also suffer quite badly for anxiety now. It started after I became unwell and has caused me to have panic attacks before. I'm going to talk about this more in a separate post though.
I hope this has given you more of an insight into what CFS is like to live with on a daily basis and that it is more than just fatigue for a lot of people. It can be a very debilitating illness which has stopped me from working for 1 year and in that time I have done very little socialising as well. I didn't think it was possible to actually spent so much time within the same 4 walls but I've done my best to make my room a comfortable and relaxing place.

Would be interested to see if anyone else experiences similar symptoms to me. You forget that your not alone and there are other people out there who are going through the same thing. 

My Story

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In April 2015 things changed very suddenly. I was healthy one minute enjoying a wine course at work then I began feeling like I was going to pass out. I had vertigo and my vision was out of focus, I felt nauseous and shaky. I thought it was from missing breakfast and went home to get something to eat. I still wasn't feeling better later on that day after resting. I tried to go into work a few days later, but after a few hours I felt so dizzy and light headed I had to go home again.

I felt like I'd been hit with a really bad flu but I knew that wasn't what was wrong. I was dizzy, nauseous and felt so exhausted. The weeks after this are a bit of a blur now. I visited the doctor who ran some blood tests testing my blood sugar which came back negative. So they didn't know what was wrong and to quote my doctor I was "all a bit of a mystery". I felt so convinced that there was something really wrong, I had never felt this way before. It made me furious to see how dismissive the doctors were being. I just kept dealing with these symptoms every day until my heart was racing one day and I had a temperature so ended up going to the hospital. They did more tests such as an ECG and found nothing. I now know it was most likely caused from a panic attack as I had more of them later on.

After a few months I caught an infection since my immune system is so low. I was vomiting and shaking uncontrollably one night. It was terrifying as I was staying in a hotel and had to force myself to try sleep, then had the hour long drive back home fighting the urge to throw up.  The next few weeks was the worst time of my life. I felt so unwell I couldn't even sit up; I spent all day lying in bed sleeping. I couldn't shower for days then when I did I needed help drying my hair. There were nights I would lie in bed feeling like I was going to die. I was so scared I had to ask my mum to stay with me so I could sleep. I pray that I will never be that unwell again, feeling so helpless and terrified.

I went into hospital again after a doctor came to my house and saw how unwell I had become. I lay there hoping that when they ran more tests they could tell me what was wrong. I lay in the hospital bed going between feeling like I was going to be sick to feeling like I would pass out. I could see the doctors in front of me clearly at a loss at to what to do, so after my saline drip I was sent home. I then received a call from the doctor saying that I had tested positive for Glandular Fever. I finally had a answer to what was causing me to feel so unwell. Unfortunately there is no pill or cure for Glandular Fever. The months past and I was showing little signs of improvement. I joined a new GP practice and found an understanding doctor who finally has now diagnosed me with CFS/M.E. It has been bitter sweet. I'm am so glad to finally be able to say this is what's wrong with me after not knowing for so long. Especially so I can explain to my family and friends that this is the reason why I can't work anymore and why I spend all day at home, why I have to miss birthdays. M.E isn't a quick fix and I don't know how long it'll be before I recover, I am working hard to take steps to improve my health.

What I've realised is that it takes a long time and lots of baby steps to start to recover and rebuild your strength. I have tried to push myself and inevitably I end up crashing and feeling even worse for days or weeks. I recently had one of these setbacks which has last for a few months now. It not only knocked me down physically but also it has knocked my confidence and motivation.

Currently I've started to build my strength up a little but not to the point I was at a few months ago. I've been struggling to try new things to help my recovery. It's been over a year now and I still can't believe sometimes that I went from feeling normal to being this unwell. It has changed my life and who I am as a person. There are many things I can no longer do now and it can be extremely frustrating. When people ask me how I'm feeling with myself I basically say I could not be any more fed up with the situation. This is my life just now and one day it will change again. You have to take on whatever life's throws at you and take something from it. One of the reasons why I've started this blog is in the hope that I can make something positive from this negative experience.

Nicole x