Thursday, 30 June 2016

The effect of brainfog is easier to see in hindsight

This was written in mid May, but I decided not to put it up whilst the 'ME from another perspective' series was going on, there were a lot of posts going up at that time and it seemed out of place. Since this was written my brainfog has been worse, but not as bad as it has been in the past. I am finding it difficult to adjust to varying levels of cognitive function, sometimes change is harder than things staying the same, because at least then I can adapt! Most of what I have written here still rings true. If I worried too much about always sharing things which completely describe my symptoms at the time of publishing, I would hardly ever be able to share blog posts. Chronic illness is very prone to fluctuation when it comes to both the range of symptoms and severity. It often takes me weeks to finish a blog post, in which time things could easily change a little! 

Recently I have felt the feeling of brainfog lifting from me which is a peculiar feeling. It is like having a heavy fog slowly removed, which I was so accustomed to that I didn't know how much it was limiting me. I have enjoyed feeling more like myself, and being able to think more clearly. Unfortunately it has also given me the ability to realise how ill I am, and for the first time I am frustrated and board with spending so much time in bed. Before I was just floating form day to day, which I think was the key to my contentment.

I am adjusting and know that I will find ways to cope with this. I also know that it is not necessarily a permanent change. The last few months have taught me that my health will improve and decline without any input form me, and I just have to ride the storm.

Good friends are hard to find, thanks to those who have stuck arund despite the fog.

I now realise that brainfog is a blessing in disguise, obviously less of it means that I am healthier, which is a good thing. But if anyone were to experience chronic illness to the point where they are ill in bed all day, I would wish them at least a bit of brainfog, because it makes things so much easier to cope with. My current problem is that my brain is active enough to write and I have so many thoughts, but my arms and hands are often too fatigued to type, a highly frustrating situation.

I also really miss the social contact that I had once before, again my brain is well enough to miss people and need that contact and support form other people. But unfortunately I am not currently well enough to see people, even talking on Skype or the phone is too much for me at the moment apart from on rare occasions! I am thankful for the small handful of friends who have stuck by me during the darker days of this illness, they have endured a year and a half of almost no contact from me and still kept trying. I haven't really felt able to fully articulate how much brainfog has affected my ability to communicate with others until now, I was so consumed by it, it was impossible to explain it and to recognise it myself!

Recently I have been writing much more, I hope to be in more contact with old friends more, and to be able to update this blog more. As I have said I am limited by the ability of my arms and hand to type, but other than that I am much more able to write than I was. Since mid April I have been updating my blog more regularly, I hope that I am able to continue this as I have so much that I would like to explore through words!

For anyone who wants to know what I have done to help my brainfog, it really is one of those things where it is impossible to say. I have been getting a lot of quality sleep and have been resting my brain a lot during the day which I think may have helped. I have also been taking omega oil capsules twice a day which the ME Association say can improve cognitive function. Obviously it is impossible to tell whether any of these things have contributed.

Thank you to those who have suck by me during my long periods of silence, true friends are extremely precious. I cannot explain why anyone would stick by someone who has so little to give back in return, but I am extremely thankful!

Wednesday, 29 June 2016

Why I'm going to Breakaspear Hospital

I was sure that I had written a blog post about this before, and kept it safely in my drafts section, but have now realised that I've just thought a lot about talking about this on my blog! I first became aware of Breakspear hospital just under a year ago when a friend of mine announced that she would be going to the hospital. Over the last few months I have seen her health go from partial paralysis, to being able to walk short distances from her car to a building and so on. Since then I have become aware of two other people from the UK who are also being treated for ME at Breakspear! All three of who are experiencing a really encouraging, scientifically sound treatment.

It was 9 years ago now that I came down with glandular fever (or a similar virus) whilst on a school trip to Venice. Although I was not feeling quite myself for a few moths before then, my health began to gradually decline from this trip onwards, in November 2007 I finally became too unwell to attend school on a regular basis. My trip to Venice is the earliest time which I can pinpoint any ME symptoms. So I have been ill for 9 years, all this time I have been given false hope by the NHS that ME can be treated, but note of their treatments have worked.

Since joining the online ME community several years ago, I have learnt that the NHS treatments for ME have not worked on anyone who I know (and that's hundreds of suffers who I've come into contact with over the years). This has lead me, and many others to the assumption that there is no way of treating ME.
I have always followed the research on ME as closely as possible. Brainfog has made this extremely difficult, which has often meant that I have had to rely on other people to summarise research findings. I became aware at some point in the last two years that there are some doctors in America who have been are able to effectively treat ME using a combination of drugs and supplements specifically put together to meet the needs of each patient. This gave me so much hope and there were times where I thought about how wonderful it would be to travel to America to meet these doctors. I never thought that a similar approach would be available in the UK, especially not for another decade or so!

After receiving treatment on the NHS which has harmed me, and at best, done nothing at all. I cannot simply trust any doctor who says that they will treat me. It has taken a lot of research and talking to other patents for me to reach the decision that this hospital might be a good option for me. There is no guarantee that they will be able to help me, but based on what I know about the treatments which thy offer, I think that there is a very good chance that they may be able to help me. I really believe in the science of what they do at Breakspear, and personally feel that they are many years ahead of the NHS when it comes to treating ME. The way in which they view ME fits with my own view that it is a complex illness with many biological triggers, this is in keeping with recent research!

There is so much that I would like to say about Breakspear, and I know that I will learn so much more about what they do once I begin my treatment there. The aim of this blogpost is just to say that I will be going there and my first appointment is on Monday the 20th*. I will aim to share as much about my experience as I can on this blog, and also on my social media. If it wasn't for the online community, I wouldn't have heard about the hospital at all, so it is only right for me to share my treatment process at Breakspear.

If you would like to find out more, here is a link to Breaspear's website, I also recommend flowing Rhosyn who is about two months ahead of me in her Breakspear treatment, Rhosyn vlogs and blogs about her experiences at Breakspear on her website, I find vlogs to be particularly helpful as they are much easier to follow from a brainfog point of view.

If anyone has any experiences with Breakspear I would love to hear from you, I will also try to answer any questions which people have as I embark on my treatment process.

*This was drafted on the 18th of June! On the day which this is posted I have already been to my first appointment, I was too unwell to edit and post this before my appointment. 

Monday, 23 May 2016

Lizzy's perspective: Her journey with ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

I have known Lizzy for about 6 years, when we met we were both severely affected school aged sufferers of ME. Since then I have watched Lizzy become a fantastic advocate for ME and other conditions which she suffers with. I am thankful that Lizzy has allowed me to share her writing on this blog. This was not written for the series but I feel that it fits in well! 

This month is M.E/CFS awareness month. I wanted to do/ write/ make something that would spread awareness and highlight the condition, but I also felt worried about being thought of as attention seeking, depressing, and a number of other names Ive been subject to in the past, which haunt me when I wish to speak out about my condition.

And then I realised, that thats exactly why I need to talk openly about it.

Very few people know what this condition is, let alone how it makes you feel, or how it affects your life. Something so small as a postcard, or regular texts can break the daily silence. This is a chronic illness, which like most other chronic illness get swept aside by more well known illnesses. This is based on my personal experience of the illness, and how it has made me feel. Please know that it varies greatly from person to person. Please help me spread awareness.
Its hard to focus on one aspect of the condition that has affected almost every minute of my everyday for the last 6 years.

I do not blame you if you get to this part and decide to stop reading; because it’s not funny, its not easy reading, and it will take a few minutes of your precious time. I get that, honestly I do.
If I had the choice, I would stop being ill- that takes a lot of my precious time. These are merely a few points, if I were to write everything about this illness and how it has affected me, well, there’d be a book for sure, so I’ll melt it down. (And I’m sorry if any of it doesn't make sense, because as usual I am exhausted writing this.)

The symptoms I struggle with are:
   Extreme exhaustion to the point of collapse;
   Aching muscles;
   Lack of temperature control;
   Poor memory;
   Lack of concentration;
   Sensitivity to light and noise;
   Stomach disturbances;
   Pallor of the skin
   And muscle spasms.

I was a normal early teen, learning to grow in confidence and independence. I was active, and engaged in a lot of outdoor activities. I enjoyed spending time with my family and friends, and I enjoyed school.

When I was 14, things changed. I got ill with a severe gastric-flu; in which I couldn't eat, sit up, or do anything for 3weeks, and lost 2 stone. This flu resulted in exhaustion, which continued on for many months. I gradually returned to school, but they appeared unhappy with my phased return. It was incredibly hard to back up why I couldn't attend full time, because I didn't have any diagnosis.

After getting a lot stronger and more myself again over the summer holidays, I attempted a full time return into year 10. This lasted 2 weeks. I tried to explain to staff members that I couldn't cope, but I was just told GCSE years are difficult, and I should go careful.
It wasn't that I didn't want to do the work, or couldn't be bothered, I was genuinely so exhausted I could barely stay awake.
A few days at school a week became hours, then less and less until within 3 months I had to leave completely.

I was incredibly ill, and though at every half term Id hope that Id be well enough to start back to school, that day never came. I had 10 months out of education, I was housebound, spending most of my days confined to the sofa, or in bed unable to do anything. I became incredibly isolated through the fact I no longer saw anyone from school.
I got diagnosed with M.E/CFS by specialists at a hospital in Bath. It became apparent that there was no quick fix for feeling like this. There was no cure, and very little treatment. The things that seemed to be most needed were patience and determination, and as time went on I found both of those seeping away.

In the next September I started having home tuition 4 times a week, with tutors from the Bristol Hospital Education Service. They were fantastic and incredibly flexible regarding my condition. They would teach me for 15-20minutes, then Id need to have a rest on the sofa, and then if I was well enough we would do a further 10minutes work.

Often the 20-30 minute lessons would wipe me out for the rest of the day but they were enjoyable and the tutors made them fun.
I was still barely able to leave the house, and became anxious and depressed. It is hard to deal with what could have been, or not compare yourself to your friends. Its hard to accept that things are so difficult, and it’s hard to keep going, I mean really hard.
 Every task was like climbing a continuous mountain. Brushing my teeth. Getting to the bathroom. Standing up. Talking. Listening. Looking.

On my worst days I couldn't function at all. I couldn't be propped up in bed, couldn't eat, couldn't have a conversation, couldn't watch TV or listen to audio books, couldn't be left alone at all, and felt incredibly unwell.

In December 2011, we got a wheelchair. I was apprehensive about the prospect of using one, of being seen in one, and of accepting I needed one. I felt guilty, because it wasn't that I couldn't walk at all, it was that I couldn't walk more than a couple of metres. (Often the misconception with wheelchair users is that none of them can stand or walk at all.) It was bittersweet, because at the same time I was also desperate to see the outside world, to feel the breeze on my face, to breathe in the fresh air, to have some connection to normality, even if it was for 5 minutes, and even if those 5 minutes meant spending 2 weeks recovering in bed.

When I think even now, how restricted my life is even with a wheelchair, I am so grateful it makes more things possible, for me and my family.

Over the years I have improved. Very gradually, but I have. And sometimes it feels hard to say that, because I feel like people will expect more of me, and think I’m recovered - Especially because a lot of the time I look completely ‘normal’. The truth is far from that, but small steps are going in the right direction, and I am so glad.

I know this illness has put huge strain on the ones I love the most, on my parents, my brother, my family, my best friends, and I’m sad about that, but also truly thankful to them for standing by me and helping fight my battles, for loving me even at my worst, and for not just leaving me.

I can do more now, leave the house a little more often, or for longer periods of time. I still get my bad days (frequently), (and bad weeks) and still continue the battle of knowing my limits, and accepting that some things cant be done yet, or might have to be done differently. I have met some incredibly fellow sufferers who have become firm friends, and it is nice to know there are other young people who understand.

It feels difficult as you reach each milestone, each birthday, to acknowledge that another year has been stolen by this illness. But it also signifys another year closer to recovery. And whilst some believe that isn't possible, I firmly believe it is. I have so many hopes and dreams and one day I will achieve them. But for now, surviving is achievement enough.

Thank you to everyone who has, and continues to support me. Lizzy x

Thank you to Lizzy for allowing me to share her writing!

Saturday, 21 May 2016

Kat's perspective: The unique challenges faced by young adults and children with ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Last year Kat kindly wrote a guest blog post called How ME has changed my life. I am so glad to have her back again, to write another post for me. This time Kat has chosen to write about her experiences of being a teen and young adult with ME, as well as the experiences of others who she has come across who have also encountered ME at a young age. 

About 1 in 50 sixteen year olds are thought to suffer from ME/CFS according to a recent study. That’s a huge number given the lack of support and understanding there is. As well as having ME for the last 15 years, I’ve volunteered for an ME charity for about 10 years. The youngest child I’ve personally come across with ME was six-years-old. I’ve heard of childrenas young as 2 with it too. It’s always struck me that it must be incredibly difficult to be ill so young. How do you explain to a two-year-old that they need to stop playing now and rest or they’ll feel even more poorly later?

Young people with ME face many unique challenges. Sadly, I think one of the worst is the threat of Social Services. You would think that suffering from a debilitating illness like ME would be enough bad luck for anyone, but the disappointing fact is that some parents are then accused of abuse. I met one mother who was told by a social worker that she only kept her two children at home because she was lonely, just because the social worker didn’t believe ME was a real illness. I can’t tell you the relief my family felt when I turned 16 and was no longer under the looming threat of Social Services. I can’t think of anything that would have been worse for me when I become ill than being taken away from my family. I can only imagine what it must be like for those loving and devoted parents who are doing the best they can to support their ill children to then be accused of making it up, imposing a fake illness on their children or even abusing them. It’s called Fabricated or Induced Illness (FII) and affects fewer than 50 families a year, but hundreds of families of children with ME have been probed by Social Services looking into whether they suffer from FII.

Getting an education is so difficult when you have ME. It’s so embarrassing to have to keep asking your friends if you can borrow their books so you can catch up on what you’ve missed. It was even more embarrassing when I started at college and I had to ask people who I had just met and barely knew. I think for many people one of the main problems is the pressure to keep up with everyone else. I wanted to do as many GCSEs and A Levels as all my friends were doing. Having finally cut back to something that was manageable (just four GCSEs and one and half A Levels) it then made it even more difficult when my school and college tried to push me to do more. I wanted to do more and there were so many people telling me that I should do more that it was really hard not to listen and do what was right for me. Sadly, it’s quite common for people with ME to end up doing too much which causes their ME to crash. When I was first ill I was told by a paediatrician to ignore my symptoms and try to get back to full-time school. Trying to follow his advice caused me to become practically bedbound. Unfortunately, this story of an unhelpful medical professional causing a massive deterioration in health because of bad advice and lack of knowledge is one that I’ve come across time and time again.

If you’re not well enough to go to school/college/uni, then your options are very limited. I have a friend who is only able to study her A Levels because her grandparents are willing to pay a small fortune for a home tutor. Many of my friends with ME have had to do a Degree with the Open University as there aren’t really any other options available for home study. Fortunately, that’s worked out as a really good option for me. I’m just coming up to the end of my final course, but it’s going to have taken me 7 years to complete my Degree because I’ve had to do it part-time. I’m thrilled to finally be finishing, but because it’s taken so long I feel quite a lot of pressure to do well. Nearly all of my healthy friends when to uni and got a Degree in 3 years, so as it’s taken me more than twice that long I want to make sure I have something to show for it! It was the same with my driving test – most of my friends passed when they were 17, but I wasn’t well enough to learn to drive until I was 28 so I felt quite a lot of pressure to do well and pass first time. It seems silly, but it feels like there is a need to compensate for it taking me so much longer to do things.

There seems to be a huge pressure for young people to conform and do what everyone else is doing, whether that’s going to uni or moving out and living on their own. I’ve known people who spend all their energy on just surviving; getting meals, buying food and doing the washing. All because it was so important to them to live on their own, even if that means they have to sacrifice getting an education, having a job or seeing friends in order to do it. I’m lucky enough that I get on really well with my family and that I enjoy living at home. It’s meant that I’ve been able to concentrate my energy on getting a Degree with the Open University, going out with family and friends, and (most importantly) actually getting better. I’m grateful that I’m one of the lucky ones as I’ve known plenty of people who haven’t had supportive parents. One friend had to move out as her parents didn’t believe she was ill and kept pushing her to do more. If she hadn’t left, then they almost certainly would have caused her to relapse.

Most young people are quite spontaneous. They can make plans at the last minute whether they want to go out at the weekend or even later that same night. Having ME means you can’t do anything at the last minute. If I have an essay to write then I need about 10 days so I can work, rest, work, rest, etc. in order to get it done on time. If I tried to do an all-nighter it would bring on all my ME symptoms and probably mean that I failed my essay. If I’m meeting up with my friends then I need to know when, where and how long we’re going to be. If we go to the cinema, then I can’t just pop out for pizza afterwards if we haven’t planned it. For many people with ME everything has to be planned down to the smallest detail, including things like how far it is to walk from the carpark, and where are there places to sit.

Style and fashion are important to many young people, but they’re luxuries many people with ME don’t have the energy for. When I was first ill I couldn’t do anything the same day that I had to wash my hair. I had to spend the rest of the day recovering. I was fortunate enough that I was still well enough to use a shower though, as many people have to try to wash their hair in bed, or make do with dry shampoo. I had to use a bottle of 2-in-1 as I only had the energy to apply the shampoo/conditioner and wash it out once. I then had to let it dry naturally as I didn’t have the energy to blow-dry it.

When you’re cooped up at home, unable to leave the house, then it becomes difficult to meet people, whether you’re looking to make new friends or meet that special someone. As part of volunteering for an ME charity I used to go and visit a young girl with ME and her mum regularly. They were both lovely, but in a way it was quite depressing because I was one of the few people who she saw. I was one of only two friends who she had over to the house. She was only about 10 when I first started going to see her and I was in my early 20s. I think she enjoyed my visits, but it just seemed so sad that someone so young had to rely on someone around twice her age for so much of her social life. We could talk or watch TV as long as she could lie on the sofa or bed, but that was it. She couldn’t play with friends her own age. It must be so difficult for children who can’t play games anymore.

Disbelief is a huge problem for ME sufferers. Not just from doctors who don’t keep up with the latest NICE guidelines or schools who put education before their students’ health, but also from our nearest and dearest who are supposed to be the people who support us most. At ME meet ups it’s quite common for people to swap notes on all of the insensitive (and often outright rude) things that people have said. One of the biggest problems I’ve kept coming across as part of my volunteering is how isolated people become. Out of sight is out of mind, and once people drop out of school and become house or bed-bound it takes surprisingly little time for their friends to forget about them. You have to work quite hard to keep in touch with your friends if you’re not seeing them every day. When I was at my worst I was only able to type one text a day. That’s it. That was my social life. When I was finally a bit better I progressed onto being able to email people. One day I got an email from a friend saying that she’d just read my email, but now that she was replying she couldn’t remember what it said and couldn’t be bothered to go back and read it. You can imagine how that made me feel – I’d spent my energy for a whole morning on that one email and I needn’t have bothered. I was at school when I became ill and I didn’t want to be labelled as an attention seeker (I already knew that people had been calling me a skiver and that was bad enough), so I never talked about my ME unless my friends asked me about it first. With hindsight I realise that that was a mistake. It isn’t really considered polite to ask people about their illness so I think my friends at the time didn’t realise that it was ok for them to talk to me about it if they wanted to. Now that I’m more open about my ME, my current friends are a lot more understanding about what I can and can’t do.

Thanks once again to Kat for writing this, you can read her previous bogpost here.

Wednesday, 18 May 2016

Deanna's perspective: 10 things she wishes she'd known when she first got ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Deanna is back with a second blog post about the things she wishes she'd known when she first got ill. Some of these things are things which all ME sufferes should be reminded of every now and then, we are told a lot of lies, and made to feel that our feelings are not valid. I also hope that this post will hep other people to understand how isolating it can be to live with ME.

1. You’re telling the truth, only you know how you truly feel, your emotions are valid.

2. Try not to focus too much on what you’ll do ‘when you’re better’, instead find things you enjoy, that you can do now!

3. Be proud of your accomplishments, no matter how small.

4. Don’t take those passive aggressive back-handed compliments, it’s not helpful to hear how you look fine. You know damn well you’re not. It’s okay.

5. Stop trying to get back to who you were before. Keep trying to be the best version of yourself, always learning.

6. Noise cancelling headphones are LIFE SAVERS.

7. Treat yourself. Paint your nails, put on a face mask, give your hair a deep treatment. Low activity spa day.

8. Ask for help when you need it. Don’t feel guilty.

9. Comparing yourself to healthy people is absolutely pointless and will serve no purpose.

10. Eat healthier, your body (theoretically) runs on what you fuel it with, so at least try to help it out by cutting down on junk!

Thanks to Deanna for writing this blog post, you can find her online at @chronicallydea on Instagram and on her blog which is!

Monday, 16 May 2016

Tasha's perspective: Denial

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

I was overwhelmed by how much Tasha's experiences resonated with me, ME is so often denied by society, but also ourselves. Coming to terms with what had happened can be the hardest part of being ill. It is so important to reach a place of acceptance in order to grow and adapt as a person.

The seven emotional stages of grief are as follows: shock/disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope. As someone with a chronic illness I often experience all seven stages on a monthly, weekly, daily basis. I grieve for the ‘old me’, who partied and studied, travelled and socialised without second thought. A seven hour stint in the library followed by a night of excessive drinking or out for dinner with friends was second nature. Now everything has to be meticulously calculated, the pros and cons weighed up, was the high pain and all encompassing fatigue worth the short moments of fun? Alcohol is a complete no go but unfortunately hangovers are not a distant memory. Every morning I wake up with a headache, sore limbs, blurry vision, confusion, fatigue and nausea, without the fun night and snapstory to even make up for it. The sickening, unrelenting rollercoaster ride that is ME/CFS is anything but linear. Thus, my seven stages of grief jump around, overlap and intertwine. Before experiencing shock/disbelief I was overcome with denial. Denial is my focus for this post, a very damaging emotion to inflict upon a body which needs to slow down.

Summer 2015: I had a job working for a kids camp in Long Island, New York. The plan was to work for two months and then travel a bit before flying to my friend’s wedding in Canada, until coming back to university to complete my final year and graduate. Amazingly and luckily I am still on that path, but not without a few major potholes to say the least. Half way through the summer I became unwell. I tried to brush it aside, convincing myself it was a combination of hangovers, late nights and early mornings; days spent running after 7 year olds. Anyone would be tired and achey right? Except, after maybe a month of working I couldn't run after the kids anymore. After lunch we had swim time, I’d make up another excuse to not get in the pool and would sit on the bench, falling asleep with my sunglasses on. It felt like conversations were happening through a glass window, underwater or in slow motion. My hearing and vision were distorted, it felt as though another layer of skin had been added to my arms and legs, they felt hot, heavy and itchy. I became disassociated with my body and with my surroundings. This is actually called “depersonalisation," a symptom of ME, an illness I was then blissfully unaware of. Deep down I knew something was wrong but I was in denial mode. I kept drinking, partying, barely sleeping and then working all day. One day after work I went on a bike ride with my now boyfriend, but then attempting-to-flirt-with-love-interest. To my absolute horror and embarrassment I collapsed and hyperventilated on the side of the road. Ok girls and boys, imagine this happening to you (while trying to retain some tiny fragment of dignity) in front of the person you're trying to impress. I convinced him - and myself - that it was down to dehydration. I had a Coke (very hydrating I know) and hopped back on my bike. While I cycled on, dignity lost forever, I panicked about my decreasing fitness levels. I use to go to the gym everyday, this made no sense?

While all this was happening, there was an insane amount of Facebook messages being bounced back and forwards between me and my mum (Queen of Worry Land we will call her). I kept sending her lists of my symptoms, describing how weird, unfit and unwell I was feeling. Queen of Worry Land came up with some worrying explanations: are you pregnant? Diabetic? And some less worrying: do you have an ear infection? maybe you should stop drinking every night before going to work early in the morning? So I stuck to the very last explanation which neatly fit into my reputation as a lightweight with an inability to stoically handle hangovers.

Camp came to end as we waved goodbye to the kids in their yellow school busses and counted up the dollars from our fat envelopes of tips. The plan was to travel around America with our tip money before I flew to Canada. I flew to Charleston to stay with a friend from camp. One morning I woke up with an inability to move. It felt like a giant was sitting on my chest, as though my skin was melting away from my body. The pain searing down my shoulders, back and legs was so unbelievably painful but in classic me fashion, I didn't want to waste my time there. (I use to hate the thought of wasting a day doing nothing but now it’s an integral part to my recovery). I Facetimed Queen of Worry Land and without saying much she knew something was really wrong. Her worry senses were in overdrive and so were mine. I knew I should be home, talking to a doctor but I still had three weeks before my flight back from Canada.

I met up with my boyfriend and his friends in Chicago, I look back at the photos, but my memory is a blur, I felt like I wasn't present, like I was viewing my surroundings and hearing conversations from outside of my body. I carried on even though my back was in agony, alcohol made me feel terrible (more terrible than usual) and I could barely walk several miles without wanting to vomit and collapse. I wanted to say yes to everything they did but my body was screaming at me to stop.

Eventually I got back to England and felt awful. In my bubble of denial I pushed it aside as jet lag, the jet lag that still hasn't subsided. Well, the test for Lyme Disease came back positive and here we are, Lyme induced ME/CFS and (what I also suspect to be, undiagnosed) Fibromyalgia.

A friend of mine said to me, but it looked like you had the summer of a lifetime. Yeah I met amazing people, including my boyfriend and some lifelong friends, I got to live in and travel America. However, the majority of my time was spent agonising over what was wrong with me whilst in a constant conflicted battle of denial, sending my poor mother messages 24/7 while relentlessly refusing to give my body what it needed. Deep down knowing something was wrong, but denying its existence because I was thousands of miles away from home.

I no longer deny the existence of my illness but the more I read and the more I explore, the more frustrated I become with the denial of the severity of Lyme Disease, Myalgic Encephalitis and Fibromyalgia. It is hard enough for sufferers to come to terms with their chronic illnesses, the loss of their past lives, so please, society, don’t deny its existence too.

Thank you so much to Tasha for writing this blog post! 

Saturday, 14 May 2016

Ellie's perspective: Getting a handle on ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Ellie and I have realised that went to the same university. Ellie was diagnosed while she was at uni, and I had my diagnosis before starting, it turns out that we were actually studying at the same time. How different things would have been if we had known each other then! Ellie has decided to write about the ways which she has adapted her lifestyle to accommodate her ME. I have found this blog post to be both inspiring and eye-opening, I hope you do to!

When I was first diagnosed with ME at the age of 20, it is fair to say that I was somewhat in denial of the diagnosis, and refused to accept that I was going to have to change the way I live on a daily basis. A condition that induces chronic fatigue and pain is possibly the worst thing to hear when you are young, at University and incredibly sporty! Although it was very hard to come to terms with the fact I was going to have to stop participating in sport, and in a way life, like I used to, it didn’t take me long to realise I needed to make some adjustments to be able to at least try and reduce my symptoms and overcome the diagnosis.

After months of feeling very low and, looking back at it now, making things worse for myself, I finally got to see an Occupational Therapist. Thanks to the mighty Google, I had already researched most of what she told me in terms of coping methods and treatment, but somehow hearing it from a professional really made me wake up!

If was from this point onwards that I told myself the only way to get through this was to help myself out. I realised that although I had to cut the things I love the most from my life, I didn’t have to lose them altogether; I just had to make some adjustments. The two things I love the most are food (particularly the sweet treats!) and exercise. So I started thinking and realised that actually I needed to look at this asan opportunity to be creative.

Cutting everything I love from my diet was too daunting for me to handle all at once. So I have started to make small adjustments here and there. The main culprit in flaring up my symptoms is the dreaded refined sugar. At first glance, I thought this was going to be the end of all things tasty, but it was far from it. In fact I now enjoy baking and cooking more than ever before because it feels like more of an accomplishment when I pull the tray out of the oven or fridge and see that what I have created looks amazing, and when it tastes better than the ‘bad stuff’, I feel on top of the world! I also try and avoid gluten where I can, and coffee seems to be a complete no go now, but luckily I have discovered two alternatives, and two supplements to this already. A relief, as let’s be honest we all need a caffeine boost at the best of times, so try adding an ME flare up on top of that! Sharing these tips and recipes to help others is part of the reason I first started my blog and I love hearing peoples thoughts about my ideas.

What about the exercise part? For a while this was impossible. I just felt far too ill to do anything! And this was hard because a lot of people just think its laziness, and at University you can almost feel people judging you or laughing behind your back, especially when it’s a Sports & Exercise Science Degree you are doing. But I soon learnt these people didn’t matter and I just had to listen to my body. It wasn’t easy though, and I had moments where I really felt like no one understood, but my family, friends and boyfriend really did help me pull through. As cheesy as it is, if it wasn’t for them I don’t think I would be anywhere near as motivated as I am today. Anyway veering off topic a bit here. It took a while to feel well enough to attempt getting back into things, but after reading the spoon theory (check it out if you have no idea why I’m talking about cutlery!) and taking into account what I had been told by my OT about pacing, I renewed my gym membership and started with 10 minute cycle sessions. I gradually increased this, and on days where I didn’t feel up to it/had no spoons, I didn’t do anything. I am very happy to say that I am now at the stage where I can cycle for 20-30 minutes and complete a core routine on a weekly basis, and manage to get out of bed the next day and go to work. Yoga is also something I have recently started doing and although it’s so far only be very occasional; I have noticed it does help with stress and relaxation. When I’m having a bad flare up of symptoms and can’t really do anything in terms of exercise, yoga has definitely been my friend!

There we have it. That pretty much sums up how I have been ‘getting a handle on ME’. Don’t get me wrong I still have bad days, and moments where I can’t help but indulge in some sugary badness, but it’s all about balance. When I know I am going to be over-exerting myself, or over-indulging, I make sure I have a rest day afterwards to recover and build up spoons.

Thank you so much to Ellie for writing this blog post, you can find her online at @gettingahandleonme on Instagram, and on her blog which is!