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!

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. 

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 I’ve been subject to in the past, which haunt me when I wish to speak out about my condition.

And then I realised, that that’s 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.

It’s 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;

•   Headaches;

•   Aching muscles;

•   Lack of temperature control;

•   Poor memory;

•   Lack of concentration;

•   Sensitivity to light and noise;

•   Stomach disturbances;

•   Dizziness;

•   Nausea;

•   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 I’d hope that I’d 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 I’d 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 can’t 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 signify’s 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!

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.

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 chronicallydea.blogspot.com!

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! 

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 gettingahandleonme.wordpress.com!

The Power of Stigma, A Campaign by Change for M.E.

This week I saw a really powerful campaign talking about the emotional affect that stigma can have on ME patents. It is honestly one of the best ME campaigns I have ever seen, which is why I have decided to share it with you with permission of course!

Living with the physical affects of this illness is hard enough, but no one can understand the emotional toll of having a condition which is constantly denied and dismissed by the general public, including medical professionals.

On their blog Change for ME have shared a collection of photos which aim to reveal the hurt which is felt by patients who are shamed and blamed for years of illness. Hurtful words stick to us and we carry our memories of them around with us, just like the illness they cannot be seen!

The creator of the campaign LA Cooper has had all of these things personally said about her. For me about 95% of these things have been said to my face, but I have heard all of them said about ME! Stigma hurts. While there is currently no treatment for this life long condition, one thing that can be done to help is that people have an open mind towards the illness, and believe us.

If this campaign has resonated with you please share it, more pictures can be found on the Change for ME website. You can also find Change for ME on Facebook and Twitter.

Hannah's perspective: The 10 unexpected blessings of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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

As I have got to know Hannah, I have been blown away by her positivity and enthusiasm for life. It therefore was no surprise when she chose to write about the 10 unexpected blessings of ME/CFS. Hannah doesn't deny the harsh reality of this illness, but recognises that trials sometimes bring out the best in people, even if we wish that they had never happened in the first place. I am thankful for Hanah's unique perspective on this topic.

Myalgic Encephalomyelitis (ME), more commonly known as Chronic Fatigue Syndrome (CFS), is a complex, multi-layered, neurological illness. It has many symptoms and can affect almost all of the organs, including the brain and spinal cord. For all sufferers in one way or another, their life has been completely changed. Currently there is no ‘test’ to diagnose ME/CFS and no cure. This makes it incredibly hard for patients to be diagnosed and treated. As well as this, lots of sufferers look really quite “normal”, leading to lots of confusion and misunderstanding surrounding the illness. An estimated 17 million people worldwide suffer from ME/CFS.

I’ve had ME/CFS for just over three years now, and it is without a doubt one of the hardest things I’ve ever had to deal with. It’s something I wouldn’t wish upon anyone, your life as you know it is completely turned upside down. The simplest of tasks like; brushing your hair, driving to work, going out with friends, having a shower or exercising can be unbearable and even impossible. The last thing I want to do is understate how awful this illness is, but I’m also a huge believer in the saying “With every bad, comes some good”. Sometimes life sends us blessings in very strange ways (very strange!) but all you can do is learn from them. ME/CFS has certainly taught me some incredible lessons, and blessed me in weird and wonderful ways.

So here is what I call- ‘The 10 unexpected blessings of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’:

1. You appreciate the little things. For most people life is so busy, everyone is rushing from one thing to the next, focussing on the next big thing, task they have to achieve, or holiday. I was exactly the same. Being a perfectionist type personality I was always thinking about what could be the next thing I could achieve, would get super excited and focus on the next “holiday” or “adventure”. Which is great and I love that part of me, but on the other hand I just wasn’t appreciating the simple little things right in front of me. Illness forces you to notice these things, as the big picture stuff just isn’t there anymore. You’re focusing on survival, and you realise that the simplest of things can bring you joy. It sounds very corny, but every time I drive home from somewhere now I notice how beautiful Mt. Dandenong looks. Because for months I didn’t leave the house, now there’s not a day that goes past where I don’t look up at those mountains. A chai latte can bring the biggest smile to my face, or just simply listening to my family laugh around the table, because for so long I was in my bedroom and couldn’t join in. Now I can, and I think that’s one of the best feelings in the world.

2. You grow an enormous sense of empathy and compassion for anyone else suffering. There’s no way you can go through so many awful experiences with health, and not feel enormous empathy for someone going through a similar experience. I am hopeless now, even if I watch a T.V show on someone I’ve never met, struggling with their health I can easily shed more than a few tears!

3. You learn who your real friends are. This is probably one of the hardest, but most rewarding things I’ve had to go through. When you’re chronically sick you really learn who’s there for you at the end of the day. Unfortunately there will be friends that you thought cared, and some of them probably do, but are just way too caught up in their own busy world. The friends that still invite you (even though you’ve had to cancel the last three times), that still send you a message to check how you’re going, that cook you a meal or drop off some treats for you, that offer to drive you to appointments or social events- they are absolute treasures! They’re true friends. I can only count my true friends on one hand now, but I know that whatever happens they’ll always be there for me and I’ll always be there for them. I’m the luckiest girl in the world to have them in my life.

4. You will hit rock bottom, but from there the only way is up. There’s nothing worse than being sick, you don’t feel like yourself, you can’t do what you used to be able to do- let’s be honest it sucks! But once you hit that very horrible low, the only way is up! You develop a very strong sense of persistence and hope. One of my favourite quotes from Bob Marley sums this up beautifully “You don’t know how strong you are until you have no choice but to be strong.”

5. You will appreciate those who love you, on a completely new level. I have always been way too lucky and had the most incredible, supportive family, boyfriend and friends. I’ve always loved them to bits, but being sick means you can’t do an awful lot for yourself, and you become very dependent. You’ll see them pull up belief and strength when you thought there was none left, they’ll pick you up when you just can’t do it anymore. Without them I would not be anywhere near where I am today, I owe them everything. Thankyou doesn’t even cut it!

6. You learn to accept help. There is no way you can deal with this illness alone. You learn that it’s actually not weak to accept help, that it’s strong. I was involved in the Yellow Ribbon Program at school (an initiative encouraging people to ask for help when they were struggling). Now a few years down the track, I suddenly realised what they were going on about, it’s extremely hard to ask for help! But eventually I did, and found the best physiotherapist, psychologist, and specialists who still help me today. I also learnt that you can’t do everything yourself (damn unfortunately I’m not superwoman!) and that people actually want to help you. For example my beautiful Mum and Dad. Dad can’t cure ME/CFS for me or take away the pain, but he can make me a beautiful cup of tea. Mum can’t cure it either, but she can drive me to the shops and help me buy some clothes. And guess what, they actually want to because it’s something practical they can do to help.

7. You will discover new hobbies, likes and passions you never knew you had. With a big change in your capabilities, you have to sometimes adjust your hobbies accordingly. Before I got sick I knew nothing about yoga and hated cooking. Now I am obsessed with both! I also discovered vegetarianism, and absolutely love coming up with yummy meals and raw treats to make. Out of a lot of boredom and loss of independence, I also started my own little crafty business ‘Little Big Gems’. I make handmade soy candles, jewellery and ring bowls whenever I’m up to it and sell them. I really believe that without getting sick I wouldn’t have discovered these beautiful things, either that or it would have taken me years to find them!

8. You realise how important it is to judge your self-worth not on achievements, but on who you are as a person. Society today is pretty obsessed with our exterior. This is something I didn’t even notice until I got sick. When I became unwell, suddenly all my ‘exterior’ was ripped away from me. I couldn’t attend uni anymore, I couldn’t work, I couldn’t help out with local charities, and travelling like most normal young adults do was out of the question for me. I felt a huge amount of loss and sadness, I didn’t feel like me anymore as everything I was once able to do was either non-existent, or there in the tiniest amount. It wasn’t until my psychologist actually pointed something out to me, and she said “You’re still you, you’re still Hannah, you actually just have to start judging yourself not on your achievements and what you can and can’t do, but on who you are as a person. At the end of the day that’s all that matters.” She was so right, I no longer felt embarrassed when someone asked me “What are you up to darling? Are you studying, working, or travelling?” Because I realised that those things are great, but they certainly don’t define you.

9. Your resilience will be rock solid. People can be extremely kind, and unfortunately some can be very naïve and judgemental. I’ve had people say to me “Did you know ME/CFS is actually caused by emotions you haven’t let out?” “Oh so are you just really anxious or depressed?” or my personal favourite “Ooo maybe I have ME/CFS? I’ve been feeling so tired lately.” Sometimes you’ll feel so vulnerable and you’ll feel like crying, kicking and screaming all at the same time. But in the long run, you will develop the thickest skin ever, and you’ll become the Resilience Queen or King- not much will be able to knock you down.

10. You have a chance to make an even healthier version of yourself. Not many people experience a health event like this that is so big, and still get a second chance. ME/CFS shakes you to the absolute core, but gives you a chance to completely re-invent yourself, including your health. Treatments for the illness are still very trivial, and what may work for some, might not work for others. But overall a healthy diet, stress management, and gentle beneficial movement can help so much. In the long run, if you combine this with treatment options that work for you, you will be so healthy and happy!

Sending love to all the spoonies out there, and their carers. I hope these unexpected blessings can bring a tiny bit of joy and comfort.

Thanks so much to Hannah for writing this blog post, you can find her online at @healing_han on Instagram.

Deanna's perspective: How she got ill

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

Deanna has written two posts for this series. The first tells the story of how she got ill, and explains how she has come to reach a place of acceptance. I'm so pleased that Deanna has chosen to write about the emotional affect that ME has had on her. I can relate to the intense feelings of loss and frustration which she has spoken about here.

I was 14 years old when my family and I took the train down to London, we were going to see my older brother at his work in a very swish bar. Getting there was exciting, I got a hazelnut latte- it was absolutely disgusting, but I sat in Kings Cross determinedly sipping it feeling so grown up.

I remember nagging my mum about wanting to go into a M.A.C store, as I’d never been in one before and I wanted to get an early Christmas present.

Walking around London was exhausting, and I complained of pain in my hips and feet, it felt like we’d been walking for far longer than we had, and all the lights and noises and people were very overwhelming.

After we came back from London, we all started getting ill. Not just colds, but serious cases of the flu.

Christmas had been cancelled. GASP.

When we did have our ‘late Christmas’ I was still too ill to sit up, and was hibernating in my mum’s bed, I couldn't eat any Christmas dinner, and my arms were too weak to open any presents.

I don’t remember much from this time, as I’m pretty sure I just slept throughout each day.

In the new year, we had mocks, Science mocks specifically, and I missed one, and people came up to me saying I’d have to retake them all again. I shrugged it off as if it was the most insignificant thing.

My illness was still in the 'early stages’ still very mild, but getting worse every day.

On the 5th of January it was my 15th birthday, I went to the cinema and a restaurant with some of my friends- again I don’t remember much, except how much my back hurt by the end of the evening.

I started missing more and more school, my attendance wasn’t exactly spotless to begin with, but now I had missed 3 or 4 straight weeks and we were being called in for meetings.

I started googling my symptoms- I learned what the word fatigue meant! And stumbled across 'Chronic Fatigue Syndrome’/M.E. I did a lot of researching and discovered how all my symptoms matched up with M.E, and that I was already too poorly to go back to mainstream school.

I think at first I was diagnosed with Post Viral Fatigue Syndrome, which is supposed to be a short term thing… but when it was like 6 months of the same symptoms they finally diagnosed me with M.E. I honestly cannot remember how long it all took, I was in and out of hospital for lots of specific tests, and seeing lots of different paediatric doctors.

I then got referred to a hospital school where I went in for a few half days a week, and managed to get some GCSEs. Not as many as I was hoping for but, I had to learn to re-evaulate and be proud of my achievements. Not matter how small they seemed.

That school was the best. I miss it so much.

It was great being surrounded by people who didn’t judge you for needing breaks, and taking mid-lesson naps!

I went in to collect my GCSE results, on my own, my mum waiting in the car. Saw old friends and they smiled at me, but it was different, I definitely didn’t feel connected to that school anymore, it was just a building with people in.

So I passed my exams and everyone- including myself, was shocked! But I was so happy, getting the grades I needed to go to musical theatre school.

Long story short, that didn’t happen, on the taster day I was swaying on the spot and I had to sit out of most of it. I felt like I was underwater, and stuck in cement, it was impossible. I barely spoke two words on the drive home, not because I was sad, realising that I couldn’t do it. But from pure exhaustion. No energy. All gone.

After my ‘dream’ plans fell through, I looked at regular college, doing art.

I loved art, and the course was great, a small class, a really cool tutor, the building was snazzy, and it just felt like a new start, and I could finally be doing something that made me happy.

But- M.E doesn’t really give a crap! I managed to pass out on the first day! Going up the 3 flights of stairs up to the classroom, was like climbing Everest. When I got to the top I had to sit down on the floor and wait until the tutor came to unlock the door. After a few days of college, I had gotten to the point of bumping into things- in clear view, and not hearing when someone asked if I was okay.

I felt like screaming. It was so unfair! I wanted this so badly! And it’s not like it was hard, it was only a few days a week! But with M.E it was impossible. I was really pushing myself to do this, but the more I pushed, the worse I got.

I felt hopeless, and angry, and jealous that everyone else was capable and just doing what they wanted to be doing, and I wasn’t. I felt like I had wasted everyone’s time, and after a few weeks of not attending, they took me off the course.

So! I sulked for a while, bitterly watching everyone continue to live busy lives with minimal effort.

But I changed my mindset. I stopped worrying about timing and ‘when I get better', I’m focusing more on what I’m able to do in that moment. And taking it each day at a time!

Since then, I’ve been at home. I distracted myself with the internet. I was okay. As long as I had access to wifi, I was okay.

I got a kitten Luna, rather on a whim. But she made me so happy. She turned out to be deaf, so she’s ‘broken’ like me. Hahah.

When I started my M.E' instagram, it felt like a brand new start. I’d found a new hobby, that I could manage from the comfort of my own bed!

It was a place to vent/ask questions/ and share about my own experiences with M.E. I was finally accepting the fact that I was ill, instead of pretending that I wasn’t. I embraced it, and I think that helped enormously with my mental state. It doesn’t get me so down as it did before. Because I can always talk to other people with the same problems, and they care, they want to hear about it, they want you to feel better.

As I get worse physically, I get better mentally, the spoonie community has helped me realise that no matter how hard things get, there’s always something to smile about, there’s always something good to take your mind off it. There is always someone who is willing to listen and give advice.

I sometimes cringe at how sappy I come across, the sarcastic part of me, or the old part of me was a lot less understanding, and I keep trying to remind myself to not want to be the old me. I was only 14 when everything stopped. And in that time, I have grown so much as a person, discovered so many things that I wouldn’t have, had I not gotten ill.

So no matter how hard it is to watch everyone you’ve grown up with continuing to live their busy lives, going to uni, getting jobs, getting cars, moving out, moving in, getting engaged! having babies!

I need to apply a different rule to myself.

I am not there yet, because I have been held back. It’s not my fault, I didn’t ask to get ill.

Admittedly, I am only 18, so I’m not in that much of a rush, I think just my facebook friends are all living life in fast forward!

Still, after 4 years- feels like a lifetime, I still have wavering moments where it’s all too much. You feel sorry for yourself, and angry at your body for doing this to you. But I think it’s okay, to let those feelings run their course, as long as it doesn’t bog you down; emotions are healthy. And recognising that ‘bad’ emotions are just as important as ‘good’ ones when dealing with a chronic illness.

So that was my ‘how I got ill story’! I wrote it over a few different times, so if it sounds a bit jumbled then I’m sorry! I couldn’t do it all in one go!

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

Pippa's perspective: From chronic illness, to starting a non-profit

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 Pippa since before she started her non-profit, always trying to put positivity into the world and never trying to teak from anyone else's glory. Pippa just does what Pippa dose, regardless of what's going on around her. I admire how she has managed to keep up with her full-time degree, as well as start a non-profit, all whilst battling several chronic illnesses including ME. Here Pippa is going to talk about that journey!

Acquiring a chronic illness in your early twenties is 100 per cent not ideal. Over the past two years, I’ve gone from being a healthy, active student and pre-professional dancer gallivanting through life, to becoming a medical mystery.

I first became unwell at the age of 15, but the past two years have seen me suffer a dramatic decrease in functioning, meaning my ME/CFS is now severe enough to significantly affect my quality of life. Explaining to people that no, it wasn’t a tragic accident and no, it isn’t amazing to stay in bed all day and no, I’m not on my Make-A-Wish Foundation wish every time I leave the house consumes a lot of energy. Meanwhile attempting to conduct trips out pushed in my wheelchair with housemates in heels, on cobbles, after cocktails, has been a battle in its own right, as has learning how to swallow medication while wearing red lipstick.

I’ve been so occupied with trying to keep up with student life while being disabled that it didn’t occur to me until recently that I’d somehow accidentally founded a non-profit movement in the process.

Spoonie Survival Kits began as a little bit of fundraising I decided to do during my university holidays. ‘Spoonie’ being the slang word for a chronic illness sufferer, the kits are little bags of happiness that aim to act as a pick-me-up on harder days. They contain crafts to do in bed, treats to eat and things to wear. They also include symbolic items to remind sufferers they’re not alone and somebody cares.

I made 20 of these kits originally and sold them online. I enjoyed doing it and was glad to raise a bit of money, but definitely wasn’t prepared for what happened next. People began asking when the next kits were coming, requesting kits for friends and asking what they could do to help. That was 10 months ago and the kits have been constantly in demand ever since.

This demand led to more and more kits being made, volunteers being hired an Etsy shop and online community being established, and my little bit of fundraising becoming a non-profit project. All the money made from sales goes straight back into good causes: 25 per cent is used to sustain the project and 75 per cent goes to a chronic illness charity, our current charity being Fibromyalgia Action UK.

The way things stand now, the project is achieving three things. We’re raising money for worthy causes, we’re helping to make sufferers smile and remind them they are more than their illness, and we’re now providing accessible volunteering opportunities too.

Many people with chronic illnesses may not be physically able to participate in paid employment, but they still want to make a meaningful difference to the world. I now have three of the most amazing volunteers: Lauren crafts bracelets and other cute bits for the Etsy store, Beth created our beautiful website and social media sites, and Nikki helps with administration, fundraising and more. The project also offer accessible, time pressure-free opportunities for crafty people with chronic illnesses and disabilities who want to make items for the kits or fundraise for us.

We have no funding for the long-term as we’re not eligible for grants or start-up bursaries, and due to the nature of my illness I cannot fundraise as much as I would like. We rely on the kindness of others and massively appreciate money donations, fundraising on our behalf and crafty people making items for the kits. We would love to have sponsorship from businesses one day, but for now I truly am grateful for the individual support we receive that helps us to keep things up and running.

When I first got ill, I definitely wouldn’t have believed it if someone told me I’d end up running a non-profit business from my bed. I’m not one of those people to preach that ‘everything happens for a reason’ or say ‘I’m so glad I got this illness’, but the fact that something so good has emerged from something so awful really is humbling.

You can find more information about us at our website www.spooniesurvivalkits.com or purchase a kit on Etsy www.etsy.com/uk/shop/spooniesurvivalkits - we have a limited number of M.E Awareness Kits on sale throughout May. If you’re a person with M.E who’d like to donate or volunteer, you can find us at spooniesurvivalkits@gmail.com or on Facebook, Twitter and Instagram.

Love, hugs and spoons x

Thanks so much to Pippa for writing this blog post, I have personally used Spoonie Survival Kits and think that they area wonderful non-profit! You can find Pippa at @sassyspoonie on Twitter and the same on Instagram.