I saw an article on the daily mail about a new project called ‘suffering the silence’ which is helping spread awareness about ‘invisible illnesses’. So thought I would share my story but before I do just wanted to explain a little about myself and my illness. 

Hey my name is Katie and I’m 21 years old. For over the last 6 and a half years I've suffered from M.E/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It’s estimated that around 250,000 people in the UK are affected by this illness. No one really knows what causes M.E but for me personally it was from a virus. The main symptoms are; severe fatigue, ‘post-exertional malaise’ (which basically means after any kind of physical or mental activity you become really fatigued and ill for days/weeks), muscle/joint pain, pain all over your body, migraines, stomach problems similar to irritable bowel syndrome, sore throat (cold/flu like symptoms), sleep problems, sensitivity to light, sound and smell, depression, anxiety, brain fog, temperature control, dizziness and intolerances to food/alcohol. I can’t stress enough that every person with M.E will have different symptoms which will affect them in different ways. Some people can just manage to go to college/work others can be housebound or completely bed bound. No matter if you’re 5% or 85% every person with M.E is suffering. So many people think only adults get M.E which is completely untrue many teenagers and children have M.E too.

When I was little never really got ill only had like a cold or sickness bug now and again like most people do. I am a very shy person and a massive worrier although this never stopped me from doing anything. I hardly ever missed a day off school always got 100% or 99% attendance (have certificates to prove it) also did a lot of exercise too. I went trampolining twice a week and swimming. I will never forget the day I became ill ...

It was around October time in 2008 and there was a sickness bug going around the school. I remember sitting in English (I'd just started year 10) and suddenly I felt really dizzy and sick. I tried to ignore it but got worse and worse! Until I thought to myself if I don't leave this classroom I'm going to be sick. I asked the teacher if I could go home and remember someone behind me saying 'Katie is never ill' which was right I never was. She wrote me a note and was allow to go home. I spent the next few days in bed but as the days went by I didn't seem to get any better. I went to my doctors and they just said I had a virus. I tried going back to school but only lasted one lesson and was sent home again. Days turned into weeks and slowly I was getting worse! Kept going back to the doctors and first they said I had tonsillitis then glandular fever (turned out I didn’t have either) I had loads of blood tests which always came back normal and the doctors didn't know what was wrong. Basically i was at the doctors nearly every day! It got to the stage where they didn't even have to say my surname (when calling me) because they knew who I was! I remember one doctor saying to me in a really nasty way 'there’s nothing wrong with you go back to school' it really shocked me but thought to myself she’s a doctor so she must be right! I tried my best to go back to school and get on as normal but the more I pushed myself the worse I got. I remember having to sleep in my school uniform because I didn't have the energy to put it on in the morning. Every time I did manage to get into school teachers would always ask me if I was ok and if I wanted to go home (must have looked awful because this happened all the time). When I got into lessons it felt like someone had put 20 weights all over my body! I could barely sit up straight or walk because the pain was so bad. Every minute felt like an hour had gone by and could never do any work because I felt so ill. After months went by I went to school less and less and my health just kept getting worse. Every day I got these awful headaches, sickness, the worse stomach pains you can imagine, pains/aches all over my body, temperatures that I couldn't control, dizziness, sensitivity to light and noise, sore throats, extreme tiredness ... the list can go on! Plus on top of all this I kept getting cold after cold and infections too. I would cry every day because of how ill I felt. Sometimes I would lie on the floors for hours because the pain was so bad and couldn't even get into my own bed. At first my family didn't believe me and thought I just didn't want to go to school. My dad would get really angry and shout at me. I think this is the hardest thing to cope with when not only doctors but your own family don't even believe you. Even my brother confess to me a while ago he didn't believe I was really ill and said he was sorry for not believing me. Also my friends were really worried about me at first but as the months went by they stopped talking to me (which really upset me). Sadly when I got into year 11 was just too ill to go into school. So my teacher said she thought it would be better if I was home tutored. I took 5 GSCE's because that was all I could manage at the time. I got 2 C's and 3 D's which was amazing for me specially as not only was I really ill but I'm dyslexic too. I did try and go to college to do an art and design course (I really wanted to do even before I got ill) but sadly that didn't work out and had to drop out. I was so upset and yet again my dreams were broken no thanks to this awful illness. I was told about an online course called Nisai learning and ended up retaking my English and doing ICT/business for 2 years. It's basically a class but online. I passed both my English and ICT/business which was great! I was also referred to Camhs twice and the children's hospital in Birmingham. Sadly they weren't very good experiences. Camhs turned me away twice and the second time I went he basically said 'I wasn't really ill and just wanted my mom to do stuff for me'. Can’t believe he tried to blame my mom for everything and to this day this still makes me so angry! My mom has always done her best for me and fights for the help/support I need when I can’t myself. Yes we argue at times and she does the famous ‘get out of bed and get some fresh air’ but it’s only because she cares.  Anyway when I was under the children’s hospital I did have a MRI and ultrasound scan which both came back norma lThe doctor did bring up m.e a lot but would never officially diagnose me with it. So my mom asked if there was a m.e specialist in Birmingham. She said there wasn't any in the West Midlands (back then there wasn't) that was that because there wasn't one near me they didn't want to know. My mom went online and found a m.e specialist in Bath and managed to get me an appointment with them. When I saw this m.e specialist it was the first time someone had explain to me what m.e was, the symptoms etc. For the first time I finally understood why I felt so ill especially after doing any kind of activity.  After 2 years of first becoming ill finally knew what was wrong I had m.e! I can’t even explain to you how scary it is feeling so ill and not knowing what is wrong. Remember thinking I had cancer or some other serious illness. Sometimes in the day when I was home alone in bed (too ill to go to school) I would ring my mom at work in tears begging her to come home because thought I was dying and was really scary. It sounds so stupid now but was only 14 at the time and had no idea what was wrong with me. Sadly I couldn't get funding for anymore appointments but at least I got an official diagnosis! When I was 17 didn't get any help at all and started to feel so depressed, alone, and that's when my OCD started. Felt like no one cared or wanted to know. I had lost basically everything I once loved! I just didn't want to be here anymore and couldn't see a way out of this! 

There’s a lot more that has happened to me over the last 6 and a half years! To this day I still find it very hard to talk about it because the memories are too painful. Basically just wanted to get across what it's like to live with m.e and how it ruins your whole life. I'm now 21 years old and mainly housebound. I do see an occupational therapist but hardly ever see her if I’m being honest. I do have a supportive gp doctor who understands m.e but think she does get frustrated she can’t give me much help or make me better.  To everyone who says m.e is just someone who is, a bit tired' or 'lazy' do you think I want to be in this bed day after day in severe pain looking at the same four walls with no life? M.E has taken away what should have been the best years of my life and is still doing so. I think some people don't realise how lucky they are and take everyday life for granted. Wish I could do my hair, have a shower, go to college or work and even just be able to go one day without feeling so ill and in pain! Basically have a normal life! Sadly over the last few months my health hasn't been great and my fight with m.e goes on! No matter how hard it gets there’s always a little bit of hope inside me that one day I will get better and enjoy life once again. All I want is for people to understand how awful this illness is and not to judge so quickly. I WANT to get better I have dreams and hopes just like everyone else! Everyone with m.e has a different story to tell but at the end of the day we all have one goal ... to get better and find a CURE! My wish is that one day real research is done and they finally find out what causes m.e, how to cure it and most importantly show m.e is a REAL serious illness! So the next generation don’t have to go through the hell that myself and many other sufferers have and still go through. The thought of anyone especially a child going through what I have breaks my heart … I NEVER WANT ANYONE EVEN MY WORST ENEMY TO GO THROUGH WHAT I HAVE AND STILL DO! 

If you read this then thank you from the bottom of my heart. I really hope it has opened your eyes to what m.e is really like for me and many others! Please spread awareness about m.e/cfs and together we can get one step closer to finally getting real research and a cure! 

Lots of Love 

Katie
xxx