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.