It’s been a while since my last post. I’ve had quite a difficult time due to a family illness so I’ve not been in the right head space or felt well enough to write anything. In time, I think dealing with stress and trauma as a sufferer of M.E. will be another blog, but I’m not quite there yet.

For now, back to my diet… As you may have read, last year I became interested in the link between food intolerance and M.E. Many M.E. suffers have reported benefiting from eliminating certain foodstuffs. In response, in December I took a food intolerance test which identified an intolerance to egg white, yeast and sesame seeds, as well as a borderline reaction to some other foods. I therefore embarked on an elimination diet for 12 weeks to see if these foods were actually making the symptoms of my M.E. worse.

When I started looking into the symptoms of egg white and yeast intolerance I was staggered by the similarities to symptoms of M.E. Both intolerances have similar symptoms:

• Headaches and migraines
• Anxiety and depression
• Tiredness and fatigue
• Joint pain

It seemed like a no-brainer to give the elimination diet a try. I think when you suffer from a chronic illness, anything that gives a glimmer of hope that it might make you feel slightly better is worth a shot.

How did I find doing the diet? REALLY HARD! Yeast was the biggest challenge to eliminate my diet. It is in so many food items- cakes, bread, processed meats, cheese, most alcohol, stocks and sauces. It is also a hidden ingredient in many other foods. I had to be so organised. Everything I ate needed to be planned in advance. I had to cook everything from scratch and take food out with me when on the go. Eating out was near on impossible. I think this comes from yeast not actually being an allergen so people aren’t informed about what foods it’s in. Most people assume that gluten free also means yeast free. This is not the case. Many gluten free items still actually contain yeast.

The diet was made easier by the fact that I actually felt better.  In a matter of days I was far less fatigued, had fewer headaches and migraines and could think so much clearer. All round I just felt better and happier.

However, the trauma I mention above then struck and caused me to have a setback- I felt really unwell again. Whilst I stuck to the diet, I was seeing the benefits of it less than I did in the early stages. I guess this goes to show that whilst diet can help alleviate conditions, it’s only a small part of the bigger picture. Wellness and self-care need to come from a variety of aspects of life- not just diet.

Fast-forward a couple of months and the stressful situation has largely passed. The 12 week elimination diet is also over. I’ve started to reintroduce my trigger foods. I am trying to do this by only eating these foods every few days and only when I am out of the house. This means that when I go out for dinner I can eat what I want (within reason). At home, I am largely maintaining a yeast free, egg free diet. I’m being mindful about what I eat but still enjoying most foods in moderation. The big news is, I’m feeling pretty good! I’ve only started to feel better in the last few days but for me that’s great.

This doesn’t mean that I’m good as new and recovering from M.E. It just means that I have identified that diet is one factor in managing my condition. It’s now one of the tools in my box. I’m taking from this that if I can make lots of small changes to different aspects of my life I hope that I can get to a point where my ‘normal’ is feeling OK more days than not. The champagne (which is actually one of the few yeast free alcohols!) is on ice for now.

I’ve made a point of not writing anything for a few weeks whilst I’ve started my elimination diet. As I explain in my blog from a couple of months ago, I’ve recently had a food intolerance test which has identified an intolerance to egg white, yeast and sesame seeds, as well as a borderline reaction to some other foods. I’ve therefore embarked on an elimination diet for 12 weeks to see if these foods are actually making the symptoms of my M.E. worse. Today I am four weeks into this diet so thought it was a good time to reflect on how I am feeling and if it’s making any difference to my condition.

Do I feel any better after 4 weeks of cutting these foods from my diet? The short answer is yes. In a matter of days I was far less fatigued, had fewer headaches and migraines and could think so much clearer. All round I just feel better and happier. I’ve found work a lot more manageable because I don’t feel so unwell. I’ve gone to bed at a respectable time rather than 7pm. I’ve enjoyed what I’m doing rather than seeing it as something I just need to get through.  The greatest moment in the last few weeks was when my husband said he could see a change in me and I’d been laughing.

Whilst this is absolutely wonderful and I am so encouraged by this, it’s certainly not a magic pill and I am not cured. I wouldn’t say I feel ‘better’ if we assume ‘better’ means ‘recovered’. I’d say that my symptoms have reduced and my quality of life has seen an improvement. I feel better than I did. In the past I would probably have a day a week where I felt my version of ‘normal’. The rest of the week I’d either have been in bed or up and about but really struggling to get through the day whilst feeling really unwell. Whereas since beginning the elimination diet, I’d say I’ve probably had a day or two each week where I’ve felt unwell (I write this with a two day migraine after not being able to get out of bed yesterday). For me this represents a huge step but I’ve not magically recovered overnight.

Whilst I am seeing an improvement in the number of days I feel OK, I do need to be mindful of pacing. It’s almost harder when you feel well as you forget temporarily about this condition and can take things too far, causing a setback for a few days. Incidentally, I think that’s why I’m feeling unwell at the moment. I’ve also had a lot more joint pain. Probably because I’m moving a lot more. As excited as I am to feel better and be enjoying life much more, I do need to remember that I still have M.E. and need to pace and self-care as much as those days when I can’t get off the sofa.

The diet itself is also extremely hard work. It’s also really expensive! Yeast has posed the biggest problem as it’s in so many foods in different forms- breads, baked goods, stocks, sauces, gravy, processed meat, mushrooms and certain fruits. Because it’s not a typical allergen it isn’t listed on food packaging and I have to check ingredients in each item I buy. The same product in one brand can be OK, and another brand may have different ingredients meaning that I can’t eat it. I’ve pretty much given up eating out. When I’ve tried to discuss recipes and ingredients with restaurant staff there is a lot of confusion around yeast and they don’t seem to know what it is or if their dishes contain it. So it’s just easier not to go out. I’m planning meals in advance, making sure the cupboards are full of the food I can eat and taking food out with me to make sure I don’t get caught out or have to go hungry.

Interestingly, the diet has really opened my eyes to my relationship with food. Before this diet I wouldn’t say I had an unhealthy diet. I home cooked most of our meals. However, this diet has made me realise that I didn’t consider what elements were in my food and I still didn’t really know what I was actually eating. I also ate out a lot. I love food and the social aspect of it. I’d eat food to feel happy, feel full and to enjoy the experience. To be honest, I’m not really enjoying what I’m eating at the moment. The food is quite bland and uninspiring. I don’t hate it but I’ve not had a meal yet that I’d say I’ve really enjoyed.

I’ve realised that this is OK. Food is actually just meant to be fuel. It’s not there for us to stuff our faces until we feel full of what many class as ‘delicious’ foods. We need to feed our bodies with the right fuel to keep us functioning and alive. So I’m viewing this process as learning about what type of fuel my body needs to make me function to the best of its ability. Whilst I still want that pizza it really helps and makes sense to think that what I am putting in my body is going to impact on how it works and feels. This is so simple yet it’s taken me 35 years and feeling terribly unwell to realise it.

I’m proud to say that I’ve not eaten any of my trigger foods in the four weeks since I started the diet. I’ve had evenings when I’ve had a meltdown because I just want a Chinese but ultimately I know it isn’t worth it. I am committed and disciplined to make this diet work, just as I am to anything that may help me feel better.

I’ve got eight weeks left of my elimination diet before I start to reintroduce some of my trigger foods. I will check back in with an update on how I’m feeling. Right now, I’m off to prep my yeast free, egg free dinner.

Having a chronic condition undoubtedly impacts on your ability to work. Some people with M.E. are unable to work at all, others can manage to work a few hours a week.  Or, like myself, some can still work full-time. I guess I am lucky in the sense that I have M.E. and I am working a full week. However, this doesn’t come without its problems. Working is far from easy.

One of the reasons that I am able to work full-time is due to the working arrangements of my job. I am able to work from home several days a week and to some extent the hours are flexible. I can start a bit later or finish a bit earlier if I make up my hours elsewhere and still deliver. I also spend a lot of time working alone which helps as I find being around people really tiring. If it wasn’t for these working arrangements I would not be able to work full-time. That said, I still find things a massive struggle.

I try and pace my work in line with my condition. If there’s a day I’m suffering more then I will try and do easier tasks that day and save more complex ones for my better days, where possible. I try and spread out meetings and days I spend in the office to give me time to recover from potential triggers which worsen my condition. But, as with any job or workplace, unexpected deadlines and pressures occur and that’s when I find things difficult. Back to back meetings, working lunches, breakfast meetings, long journeys and training days are all some of my workplace nightmares.

I spent several years suffering in silence and didn’t tell anyone at work about my condition. I’d battled on with dinners after work, early starts or back to back meetings. Partly because I didn’t have a diagnosis I felt I couldn’t withdraw from commitments as my only explanation for this would be that I was ‘tired’. Not exactly professional. Getting my diagnosis did help and I then began to explain how I felt. It gave me more confidence to put my health first and helped to explain if I could not perform to the best of my ability.

Nevertheless, I am still really struggling to work full-time at the moment. Because I am contractually obliged I feel that I have to give any energy I have got to work. This leaves me in bed straight after dinner most evenings and wiped out at weekends. Many evenings I can barely manage a basic conversation. Whilst I can just about muddle through the working day with some adjustments I don’t really have any energy left to enjoy my time after work properly. I have to rest so I am ready to go again the next day.

Being a conscientious person makes things all the more tricky as I always want to do my best and want people to admire and respect me. But, when you drag yourself to work feeling terribly unwell, whilst putting on a brave face, it’s hard to perform to the best of your ability and there’s always a niggling feeling that people think you’re inadequate. Invisible illness plays its part in this. I look fine at work so how could an illness be affecting my performance?

I have periods that are better than others. So, I don’t yet want to make a decision to reduce my hours or leave my job. I have worked hard to get to where I have and I don’t want my illness to take that away from me. Looking for an alternative job is also problematic. I need something that has flexible hours and the ability to work from home several days a week. Such jobs are few and far between.

I am mindful that I don’t have the quality of life I want at the moment, largely due to working full-time and the nature of my job not being compatible with my condition. I also feel that it is detrimental to my recovery and is causing me setbacks. At present it’s not really sustainable. I’ve articulated this to my employer and they are trying to do what they can to help by providing me with additional support, but they can’t take away my condition.

I’m hoping that my new elimination diet will improve my health to the extent where I can manage my condition more effectively and feel well enough to work full-time. If not then I will reassess things in a few months. Whilst I want to be committed to the career I’ve worked hard to achieve for many years, I may have to accept that I am no longer well enough to do this in the future. My health should be my priority. After all, we work to live not live to work.

New year- the time when you reflect on your achievements of the past year and make resolutions for the coming year (which you will probably break in a matter of weeks).

Having a chronic illness can make reflecting on the past year a little disappointing. Perhaps you haven’t achieved what you set out to do due to numerous health setbacks. Maybe it’s been a really difficult year trying to manage your condition, or things might have got worse. Looking towards the new year can be daunting and hopeful at the same time. Could this be the year when things start to improve?

From a personal perspective 2018 was a success in many aspects. Whilst I celebrate these achievements, any highs were underlined by my health. In fact, a high often caused me to crash and burn. Feeling pretty unwell was always there in 2018. It was always in the background during happy times. Overall, it felt like a pretty challenging year.

I started a new job which was a great personal and professional achievement. But, this presented its own difficulties as the process of meeting new people, new routines, new environments and lots of information to take in caused my M.E to relapse. For the first 6 months of my new job I battled on feeling awful on more days than not. I am now working with my employer in the hope that I can manage my condition more effectively through workplace adjustments. I am hopeful that I will find it more manageable in 2019. However, at the same time I am mindful that on a long-term basis if things do not improve I will have to re-evaluate the situation.

I got married at the end of 2017 so 2018 was my first year as a newlywed. Whilst for most this first year of marriage is the honeymoon period, my year was largely spent lying in bed or on the sofa in my pyjamas. My husband and I have had many wonderful experiences and happy moments. I am really determined to live a normal life when I can. However, these experiences have to be carefully planned and paced to make sure these are possible.

Still, there’s been times when we’ve planned lovely stuff to do but my overriding memory of it is struggling or feeling unwell. Even our honeymoon, which was the holiday of a lifetime, was difficult for me. The jet-lag caused me to relapse and I didn’t feel well for much of the two weeks we were away. My husband is a superstar and so understanding. But, I do get upset that this isn’t how things should be for both of us. I guess we’re just doing things a different way.

Going into 2019 I’m not making any resolutions per se. I think it’s unhelpful and puts added pressure on people who are already struggling just to get through the day. However, I do see a new year as a time to reaffirm what’s going well and to introduce any new lifestyle approaches. I am going to commit to my new food elimination diet in the hope that it improves my condition. I am also going to work hard on continuing pacing. I’d really like to increase my exercise, but I’m mindful that this needs to be carefully graded and considered. I also want to have a more manageable work situation so I will re-evaluate this on a regular basis.

Overall, my goal is to try and do what I can to feel better. If only a little. Here’s to a happy and hopefully healthy 2019!

 

 

 

Having a chronic health condition you are often told that a healthy diet is an important part of managing this. Eating right can make you feel better and have more energy- advice which is actually given to most people, not just those suffering with a health condition.

I don’t live on a diet of water and kale but I do eat reasonably healthy. Bar the odd day when I’m really struggling and succumb to a takeaway, I cook fresh homemade meals. I love chocolate and cake and indulge at weekends but I certainly don’t eat what would be considered an unhealthy diet. I try to drink two litres of water (or no added sugar cordial) a day. I hardly drink alcohol. I’d say my diet is pretty normal. It sounds like I’m doing all the right things to manage my condition through diet. However, I still feel rubbish.

In a bid to do anything I can to try and make myself feel better, I’ve recently become interested in the link between food intolerance and M.E. Many  M.E. suffers have reported benefiting from eliminating certain foodstuffs. Gluten being the prime example, with many of the symptoms of gluten intolerance being similar to those of M.E. When I was trying to get my diagnosis I was tested by my GP for gluten intolerance and it was negative so I know in my case that eliminating gluten from my diet is not the answer.

After further research I decided to try YorkTest, which is a food intolerance test. While a standard elimination diet could help me identify food intolerances, they take a lot of time and effort, and are very difficult to conduct, with some symptoms taking hours or days to present themselves. I had no idea if I was intolerant to any food at all so I wouldn’t have known where to begin with an elimination diet. YorkTest provide a specific list of foods which your body is reactive to and therefore you can use this to start an elimination diet if needed.

It took me a while to make the decision to do the test as it is expensive. There are also a confusing number of tests available. I decided to go for the FoodScan Programme at £250. This tests for intolerance to 113 foods. Whilst expensive I reasoned that if it makes me feel better, then £250 is a small price to pay.

The testing kit arrived in the post and was easy to use. All be it fairly painful! I returned my blood samples in the post and about a week later my results arrived. I was really surprised and fascinated by the results…

Part of me was expecting to be informed that I had no intolerances at all. In which case you get your money back (less a £25 admin fee). However, the results showed that I am intolerant to yeast, egg white, lamb and sesame seeds. They also highlighted that I am borderline intolerant to wheat, chili pepper and coffee.

Lamb and sesame seeds don’t pose too much a problem as I don’t like lamb and I rarely eat sesame seeds. I also don’t like eggs served in a way that tastes like egg. Boiled, scrambled or fried- yuck! However, I do eat it cooked in dishes and it’s also used a lot as a binding agent. Yeast is in so many food items- cakes, bread, processed meats, cheese, alcohol and sauces. It is also a hidden ingredient in many other foods. Wheat again is a tricky one and often goes hand in hand with yeast. Chili pepper and coffee I’ve just got into after over 30 years but I can  eliminate them from my diet without too much trouble.

When I started looking into the symptoms of egg white and yeast intolerance I was staggered by the similarities to symptoms of M.E. Both intolerances have similar symptoms:

• Headaches and migraines
• Anxiety and depression
• Tiredness and fatigue
• Joint pain

Could it be that these food intolerances are making my M.E. symptoms worse? In a way I kind of hope so. It would give me an answer to the reason why I feel this way.

So, in January I’m going to start a 12 week elimination diet which will involve cutting the above intolerances out of my diet, and reducing the consumption of borderline intolerances, to try to ascertain if these foods are making me unwell. I figured that the week before Christmas isn’t a great time to start a diet overhaul so I going to spend some time over the next couple of weeks researching what I can and can’t eat and then commit myself to the process. As part of the YorkTest package I will have a 30 minute consultation with a nutritionist who will help me implement my new diet.

After 12 weeks I will then begin to slowly and separately reintroduce the reaction ingredients (yeast and egg white) into my diet.  Food intolerance enables people after a period of abstinence to reintroduce a small dose of the trigger food. This is unlike the situation with food allergy where the allergic reaction is often life-long even with tiny dosages.  Slowly reintroducing the foodstuffs over a couple of weeks will identify if I still react (if I ever did in the first place).  If there is no reaction then I can increase the dosage and/or go on to introduce another foodstuff.

Since I received the results I’ve already begun to do a bit of research and assess what I am currently eating. It turns out that most of what is on my plate at pretty much every meal time I couldn’t eat on my elimination diet- mostly due to it containing yeast or egg white.

This post isn’t an advert for YorkTest in any way. Whilst I’m impressed by the process so far, I have no idea if the elimination diet will help me or not. I will blog later in the process to give an update on how I am responding to it. In the meantime I am preparing myself for the switch from cake to quinoa and living in hope that this will make a difference to my health.

It seems impossible to talk about managing M.E. without a discussion of pacing. Since I’m early on in my blogging journey and M.E. recovery, now feels like a good time to talk about it.

The life I live now is built around pacing and is far removed from the way I lived my life a few years ago. I was always completely driven and active. I was a perfectionist and an overachiever. I still have these characteristics- it’s my personality. However, they’re not compatible with M.E., so I really have to keep these traits in check to manage my condition. I’d power through at work for hours without a break, go to the gym every evening, stay up late, get up early and I’d fill every minute with some kind of activity. If I had a spare hour I’d bake a cake, alphabetise my CDs, or sort out my wardrobe. I’d find things to do that weren’t necessary.

In order to be happy I felt as though I had to achieve something every day. Long before I was diagnosed by mum often said to me “the thing you can achieve today is relaxation”, aware of the manic way I lived my life. I’d rush from place to place (always late due to cramming in too much). I was aware this probably wasn’t a healthy approach to life, but I was young, felt fine and thought I was happy to be that way.

Interestingly, people with an overachiever personality are often cited as being more likely to suffer from M.E. The tendency to drive ourselves hard is a common theme amongst suffers. On the surface we appear strong, focused and capable, naturally able to excel at whatever we do. However, we’re also highly sensitive- physically and emotionally.

Pacing is a fundamental component of managing M.E. It is about balancing activity and rest to help manage the condition and aid recovery. Totally the opposite of what I’ve described above. My previous life and overachieving personality, amongst other traits, certainly aren’t conducive to pacing. Pacing is what my former self would have been absolutely horrified by. It goes against my personality and how I had functioned for over 30 years.

Consequently, incorporating pacing into my life has been incredibly challenging. When I was diagnosed with M.E. I was already suffering with HMS and had built many elements of pacing into my life. But, I was still in a cycle of ‘boom’ and ‘bust’. On days when I felt my version of ‘good’ I’d run around at a thousand miles an hour, excited at the prospect of getting things done. The overachieving perfectionist would return. The result- a setback and several days in bed afterwards.  After a little while of learning the hard way, the diagnosis of M.E. really stressed the importance to me that I needed to change my ways. I’ve essentially had to change how I operate and make conscious decisions every day about what I do and how I do it.

In order to pace I follow several approaches. I now assess what I need to do each day which is essential. If it’s a day where I’m not feeling too good then everything that isn’t essential has to wait. I have to take regular breaks, be it at work or home, and I manage my diary really carefully. I’m lucky to be in a position where I can work from home a few days a week. Otherwise I’d be unable to work full-time. However, the days I am in the office I have a long commute. If it’s a day when I’m in the office then I won’t plan anything that evening. Also, I rarely do more than one social activity a week- talking to people makes me really tired. If I have a day where I’m active or sociable then I’ll plan a rest day the next day.

I factor in some time each day for relaxation. Usually this is meditation which I find really helpful. In the past I tensed up at the word relaxation. Now I find myself excited about that period in the day when I get to relax. It’s as normal as brushing my teeth. I try not to relax by watching the TV or reading a book as the mind is still too active. I just take some time out for the mind to switch off.

Critically, I’ve learnt to say no. I don’t know if it’s getting older or because I feel too ill to care what people think but I only do things now that I feel comfortable with and want to do. I used to spend far too much time pleasing others. Now, the times I feel well enough to see friends or be out and about are precious. I have to pick and choose what I can and want to do. If I’m feeling OK to doing something then I’m certainly not going to waste energy with people I don’t want to be around or doing something I don’t enjoy.

I’ve also learnt to adapt to situations and make them work better for me. In the past I would have people round for dinner on a regular basis. I’d spend two hours cleaning the house and then produce a 3 course homemade meal and then spend several hours entertaining, leaving me completely devoid of energy. Now, people get invited around for a cup of tea and a slice of shop bought cake. Perhaps a takeaway if they’re lucky! I’ve learned to accept that my idea of perfect doesn’t work for me anymore and it’s about spending time with people and doing things that work in the current circumstances. I enjoy myself just as much, if not more, that way.

One of the hardest things about pacing is that it actually involves stopping yourself when you still feel OK. I was advised by health professionals to operate to 70% of my energy capacity. First of all, I’m not even sure how to quantify what 70% of this is. And secondly, it’s really difficult when you’re actually enjoying something for the first time in a while to think “I need to stop now in case I feel ill tomorrow”. This is something I think will take a while to get to grips with.

All of this in itself is exhausting. However, irrelevant of my M.E. I now feel like this is a much more healthy and sustainable way to live my life. Isn’t it just good sense? I’m by no means at a point where my pacing is perfect and I still feel really unwell far more often than I feel OK. But, I’m learning to prioritise myself and what I’m capable of in the hope that over time this will help me recover.  I still have good weeks and bad weeks. Some weeks I feel disappointed to be missing out or that I’ve taken on too much. Other weeks I feel like I’ve got the balance right. For now that’s good enough for me. Unlike my inflexible and uptight previous self, I’m learning to go with the flow.

There are many challenges that having a long-term chronic condition brings. Some of these are physical, some are psychological. Some of these can be managed, and others are completely out of your hands. One of those that is beyond our control, and one that I find most difficult to deal with, is the invisibility of my illness.

If you were to look at my photos on social media, or glance at me on the street, or in the workplace, you would never know that I’m unwell. On the face of it I look like a happy, and healthy thirty-something living her life. Dig a little deeper and you’d soon realise I’m far from it.

What people don’t realise is that those fun things I do, happy social media posts, or walks down the street are all occasions when I feel ‘functional’. I’m not using the term ‘well’ because I rarely can say that I feel ‘well’.  Rather, I use ‘functional’, meaning I can just about carry out basic functions with some degree of difficulty.

When I’m at work, doing the shopping, or out with friends, people don’t see the several days after when it’s all proved too much and I can’t get out of bed. Or, me collapsing into bed when I get home from work and not moving until the following morning. Or, telling my husband I just can’t speak to answer his question about what I’d like for dinner because I feel so awful. They’ve not seen the several days prior to an event where I’ve agonised over if it will be possible. They can’t see that behind my ‘normal’ looking face and body that a trip to the supermarket is a struggle.

The reason I may look OK when I’m out and about is because I’m only out and about on days where it’s physically possible. If I’m at my worst then I’m not going to see people. The result is that when I do venture out I’m often met with encouraging choruses of ‘you look well’. I look well because I’ve managed to get out of bed, wear something other than pyjamas, put my make up on and smiled. I try to escape my illness for an hour or two and pretend I’m OK as it’s easier than trying to go into the details of how unwell I really feel.

It’s difficult enough trying to explain to the people who really care about you how you feel and the impact it has on your life. But what’s particularly hard is the attitude I’ve faced from complete strangers towards my illness- because it’s invisible.

I have a Blue Badge due to the mobility issues I had prior to being diagnosed with M.E. Again, these are generally invisible- I don’t use a wheelchair or a stick. My husband often props me up instead! The badge has also been really helpful to my M.E as walking long distances makes me tire very quickly.

I’ve had occasions where I’ve been verbally abused in car parks for using my Blue Badge. This abuse has always come from other disabled people. I’ve been shouted at and told that “You don’t look disabled”. To which I’ve responded “You don’t look ignorant or prejudiced. You shouldn’t judge a book by its cover”. Even loved ones have expressed some concern about me using my Blue Badge when I’m with them since I’m ‘less deserving’ than other disabled people. I also experienced a situation on the London Underground where a man took issue with me for 15 minutes and repeatedly called me a word beginning with ‘C’ for sitting in a priority seat.

Situations like this are not just emotionally upsetting but can really set me back from getting out on those days I can function. Whilst it’s encouraging that there is increasing acceptance of invisible illness and disability from organisations- such as badges for London Underground users to wear, or changing the signs on disabled toilets to include invisible illness- there’s a long way to go to change people’s attitudes towards invisible disability. Perhaps then, when it’s taken me two days to find the energy to go to Sainsbury’s, I can use my Blue Badge without a dirty glance.

I’ve decided to start a blog about my ME journey for several reasons. Firstly, as a form of therapy for myself. I’m hoping that getting my thoughts out there will help me when I feel too ill to get out of bed. But also, as a help for others suffering with the same condition. It’s not meant to provide any answers- I don’t really have any. It’s just going to be an account of my experiences, be they good or bad, in the hope of making others not feel alone.

So, what happened to me? At the start of 2015 I was in pretty good health. I had a joint condition called Hypermobility Syndrome (HMS) which caused me pain and fatigue, along with restricted movement, but I was managing it fairly well and led a relatively active life. I had run half marathons, went to the gym 5 times a week, socialised with friends, worked full-time and filled my evenings and weekends. I was living life to the full.

In spring of that year I was travelling to Uganda on a work trip. For this I required a variety of vaccines. After I received the vaccine for Yellow Fever (which is a live vaccine), I immediately became unwell and passed out in the doctor’s surgery. In the days that followed I developed the worst flu like symptoms I have ever experienced. My throat was so sore that I couldn’t eat or swallow and I had a terrible fever. This lasted for several days.

When these symptoms began to pass I felt really fatigued and just didn’t feel well again. After various trips to the doctor, suspected malaria, anemia, glandular fever, gluten intolerance and thyroid issues were all tested for and ruled out.

Fast-forward to November 2015 and things were no better. I still felt really unwell so I paid to see a private GP. Again, I had various blood tests and they all came back negative. They had no answers.  I remember talking to my mum saying: “I don’t know what’s wrong with me. I just feel so unwell.”

I think I just muddled through for the next 18 months. I was still working full-time but that took all of my energy. Life ground to a halt. I had stopped going to the gym, cut down on seeing friends and went to bed after dinner most evenings.

In summer 2017, after speaking with a friend who has M.E., she recommended that I returned to my GP as my symptoms were very similar to hers. And that’s when my diagnosis came. I was then referred to a CFS specialist at my local hospital.

I am not necessarily saying that my M.E. was caused directly by the Yellow Fever vaccine. However, perhaps the illness that followed as a side effect was what triggered it. I don’t know. But that day in my life is the point at which things dramatically changed. I’ve never felt the same since.

Since my diagnosis I have felt better in the sense that I now know what’s wrong, rather than wondering what was happening to me.  This made it easier at work to explain if I couldn’t manage after work dinners or with friends if I cancelled at the last minute. But other than that, life is still difficult and I wouldn’t say I really feel any better than I did three years ago.

I have put into place all of the recommendations for managing M.E. and attempting recovery, but in practice some of this doesn’t go hand in hand with working full-time or just generally trying to live life. Whilst I’ve had periods where I have felt OK (I wouldn’t say well), I’ve then experienced relapses. My quest for recovery continues!

So, this is my story and how M.E. happened to me. I hope to help you in sharing my experiences. Now, go and put your feet up!