You look really well. I think I get that now and then. Have a nice hot bath and a good sleep, that should do the trick.

Nobody making any of the above comments ever means to upset, insult or infuriate, but when you have a chronic medical condition that isn’t visible and you hear them repeatedly, learning how to smile sweetly and carry on is the only way to deal with it.

I was diagnosed with Myalgic Encephalomyelitis, also known as ME or Chronic Fatigue Syndrome, and Fibromyalgia a few years ago, and those three phrases have been offered as forms of support, sympathy, empathy and compassion ever since.

The trouble is, I do look well. My skin always seems quite tanned, I’ve got rosy cheeks and I’m certainly not skinny.

And I have continued to work and try to live a life as close to what I remember as normal because as a husband and a dad with a mortgage, there aren’t too many other options.

I’m not looking for sympathy. I have friends far worse off than me, and while I am able to work and occasionally get out and about, I will continue to do so.

No, the purpose of this piece of writing is to share what dealing with conditions that others can’t see and often don’t understand is like.

A little background

More than a decade ago I found I was getting very tired on a daily basis. As someone who, for 40 years, had rarely slept for more than six hours, I was suddenly going to bed for 12 hours or more and still feeling drained and uncomfortable the next day.

I was also aware – as was my wife – that I was becoming very restless during my sleep, often sleepwalking (or so we thought) and occasionally incontinent.

Thanks to a combination of an excellent GP and a brilliant neurologist, I was diagnosed with nocturnal epilepsy. Basically, I was having epileptic seizures in my sleep.

By then, the seizures had become far more frequent and aggressive: I was getting up in my sleep and falling down, hurting myself due to thrashing and often wandering around making noises – and this was occurring once or twice a week.

With the help of my doctors, I was quickly put onto a medication called Levetiracetam, and the dose was gradually increased until the point where, as I write, I have been seizure free for more than 30 months.

The medication did, initially, make me very groggy but the neurologist said that over time it would wear off, and because I was also getting a solid night of sleep, my tiredness and lethargy would improve.

The seizures stopped, but the tiredness remained and I was also starting to suffer long spells of severe pain that regular over-the-counter painkillers didn’t touch.

My GP was so understanding, and together we continued to try and find the cause.

My very first CPAP machine . . . (Image: Watford Observer)

I had one of those watches that tracks sleep, and although I was often in bed for 12 hours or more, most nights the watch was recording less than three hours of actual sleep.

I had always been a snorer, but that had become worse to the point where I would be in bed upstairs and the rest of the family could hear it above the TV downstairs.

I was referred to a sleep clinic, and spent one night at home wired up to a machine and wearing a little mask on my nose.

A few days later I returned to the sleep clinic to get the results, and the nurse said they didn’t need to do any further testing. I had sleep apnoea, and it was actually quite severe.

I was given a Continuous Positive Airway Pressure (CPAP) machine, instructions on how to use it, and told I needed to sleep wearing it every night or I might have my driving licence taken away as sleep apnoea sufferers are obviously at risk of nodding off at the wheel of a car.

Having already lost my licence for six months while I was being investigated for epilepsy, I knew I didn’t want to put myself or my family through that again, and so I have slept attached to the CPAP machine ever since.

I did change the type of mask, as the first one covered my nose and mouth and, while it worked, I found it a bit claustrophobic and it also left me a sore rash where the mask ‘sealed’ on my face.

Because I am a nose breather (and not a mouth breather) I was able to change to a far smaller and less restrictive ‘nose-clip’ mask – and ever since I have slept like the proverbial log as well as totally ceasing to snore

As an aside, if your other half snores, get them to talk to their doctor about sleep apnoea. The only person more pleased than me that I’ve stopped snoring is my wife...

So, I was medicated and overcoming nocturnal epilepsy, and with sleep apnoea under control I could now sleep for as long as I wanted – and that would often be 12 hours or more.

But still I was struggling to get through the day. It wasn’t, and isn’t, a tiredness that is easy to describe.

Sleep didn’t fix it. Nor did a nice hot bath, or a rest on the couch. Something wasn’t right, and my family could see it as I was slowly struggling to live normal family life as I just couldn’t do anything more than work, shower and eat.

Not only was I incredibly tired, but I was in pain – and that pain shifted.

One day I’d feel like someone had beaten me around the legs with a cricket bat, the next my legs would be fine but my hands would feel like they were in a vice.

The pain moved around, sometimes it lasted for days, sometimes for hours. Wherever and whenever it occurred, it was a pain I couldn’t find relief from with tablets, hot water bottles, painkilling gels or anything else.

Normal life, like family holidays to New York, are still possible. (Image: Watford Observer)

Thanks, once again, to my brilliantly supportive and understanding GP I was referred to an Endocrinologist.

He explained that I had all the symptoms and issues that I was describing pointed towards ME and fibromyalgia.

I had heard of both, and remembered that many years ago ME was dubbed ‘yuppie flu’ because many young people with city jobs were diagnosed with it as they suffered the sort of burn-out symptoms I had.

The consultant said there is no test for either condition, and to be able to diagnose them he would need to test me for everything else it might be, and rule them all out.

And so almost a year of a variety of different tests at multiple different hospitals in Herts and London began.

I can’t even recall what they all were. One that sticks in my mind was having an electric charge passed through various muscles and other parts of my body.

I was also almost on first-name terms with the phlebotomists at Hemel Hempstead Hospital.

Diagnosis 

One by one the results came back to show nothing, and eventually my Endocrinologist diagnosed ME and fibromyalgia.

He was very honest: there is very little support available on the NHS, there are no real treatments available and recovery is very rare.

Nonetheless, at least I knew what was wrong, and why I was slowly becoming a very sleepy recluse.

I was given leaflets explaining different ways I could help myself to manage my symptoms, and also prescribed a medication called Pregabalin, which has some positive effect on treating nerve pain.

I immediately joined the ME Association, and did a lot – and I mean a lot – of reading. I’ve written before about autistic and my tendency to obsess about certain subjects.

For a few weeks, I spent ages on websites, forums and blogs, watching videos on YouTube and even having online chats with fellow ME and fibromyalgia sufferers.

My wife and two sons were brilliant, and they also read a lot so they could better understand what I was experiencing and what they could do to help.

A family short-break on the south coast. (Image: Watford Observer)

As well as the tiredness and pain, the diagnosis explained other things I’d been aware of but trying to ignore.

I often struggle with short-term memory, and can find it difficult to concentrate, even on something simple like watching TV.

This, it turned out, was a common ME symptom often referred to as ‘brain fog’. It’s something that I have found has very slowly got progressively worse: ask me about Watford matches from the early 80s and I’ll answer everything... but in the time it takes me to unlock my phone I can forget what I unlocked it for.

My life revolves around reminders on my phone, emails and messages from my wife and even Post-It notes around the house.

Then there is Post-exertional malaise (PEM), which I used to get confused with general tiredness and pain but have learned the difference.

I can do something like go and watch a game of football, or go out for a meal, and then 12/24/48 hours later feel like I’ve got a severe hangover and the flu.

On those occasions, the only way to cope is to do nothing. I often spend whole days on the couch, or will go to bed and try to sleep it out.

The ME Association website was very useful in helping me and my family understand PEM, the effects of which sufferers refer to as ‘flare-ups’.

On such days, if I want to go to the loo and I want a cup of tea, I have to prioritise as I simply don’t have the energy to do both. I’ll drag myself to the toilet, and wait an hour or so to make a drink.

The website has also taught me a lot about managing my conditions ahead of time, and accepting that I cannot plough on through them.

For example, if I am reporting on a Watford game, then I know that in the 48 hours before and/or after I will need a period where I do nothing. Sometimes that’s tricky to do if I feel fine, but I know if I don’t then the chance of a flare-up increases.

Meeting actress Sheridan Smith at a PR event at the Harry Potter Studio Tour in Leavesden. (Image: Watford Observer)

When I’m covering an away game, I will stay in a hotel either the night before or the night after, simply because I need a solid period of rest before or afterwards. That’s not a ‘nice to have’, it’s a ‘must have’.

The Watford Observer have been very supportive, and all of the above has been possible because of their understanding and help.

It has changed my life on a broader scale though, and only when I think back and reflect do I realise how much my wife and sons have absorbed over time to enable me to function at a reasonable level.

I used to be the supermarket shopper. I was the one who did the washing and hung the clothes on the line. I would hoover and clean when I was working from home.

I rarely, if ever, do any of those things now – and I am truly indebted to my family for quietly but consciously taking tasks away from me.

I don’t go out much. To be honest, I was never a big socialiser and I’m teetotal, so I don’t miss nights at the pub.

But as with most of life now, I have to plan ahead. If we are going out with friends or to a family event, it’ll generally start earlier in the evening and people know that if we leave before everyone else it’s not because anything is wrong.

As with work, if we have a day or night out then I have to plan ahead and make sure there is a period of time afterwards where I can rest and avoid a flare-up.

Physically, I can’t walk far without needing to sit down, and I’m aware I’ve got a bit of a limp and often look a bit awkward. I have considered getting walking sticks, but vanity is currently getting the better of me.

The fibromyalgia pain makes any form of prolonged movement difficult, although even sitting and laying down pose challenges if I’m having a bad day.

No part of the body escapes: joints, limbs, my head etc. One of the worst types of pain comes when it feels like lead has been injected into my muscles which makes it extremely painful to do anything at all.

Mornings are unpleasant, as it seems to take my body time to ‘warm up’. Often I shuffle down the stairs one at a time, or on my bum on the worst of days.

Some evenings I’ll watch TV and have to continually shuffle my position on the couch as I simply cannot get comfortable.

There are believed to be around 1.3m people in the UK with ME, and almost double that with fibromyalgia – and I would imagine there are a great deal of people with both.

Speaking in the pitch at Vicarage Road. (Image: Watford Observer)

As I said at the very start, to look at me it’s unlikely you’d know if I was having a good or bad day – and for many sufferers that can cause frustration.

It took time, but I’ve now come to accept that trying to fight or ignore what I have is futile and damaging, and expecting people to know what is wrong just by looking at me is unreasonable.

I also don’t tell people unless they specifically ask. After all, if when I bump into someone they ask ‘how are you?’, I don’t think for one minute they want me to launch into a lengthy epistle!

But when I was asked if I’d write about living with ME and fibromyalgia, I felt it was a perfect opportunity to help myself and others by penning something which gave some insight into something those who don’t have it can never truly understand.

It is actually quite cathartic to write it all down, although I’ve happened to pick a day when the knuckles of the fingers on my left hand (but not my right) feel like they are on fire.

I want to share a couple of websites that are useful if you, or someone you know, have similar conditions.

The ME Association is a wealth of information and useful links, while FMA UK does an equally welcome job. Both of the above also help raise funds for research.

For me, reading, research and understanding proved very helpful: for learning about what I was dealing with, ways of helping myself and also knowing I was far from alone.

I continue to gather more information and useful ideas, and achieve that at a faster rate than I acquire more symptoms, which is a positive.

Continuing to adapt how I live my life with the support of family, friends and colleagues is undoubtedly the best way forward.

Both ME and fibromyalgia are degenerative in around 30% of cases, and because the symptoms and issues I’m dealing with are slowly but steadily getting worse, I’m already thinking about how I can perhaps retire early or cut back on what I do.

In the meantime, though, while my life has changed so much in the last few years, I’m still happy and have fun. It’s all about understanding what is wrong and doing everything you can to minimise the effects, which includes talking to people, being honest and not being embarrassed.

Listen to your body – that’s the best piece of advice I’ve been given.

And most of all, accept your normal. It may be a new normal, and a different normal to what you knew before, but it is normal all the same.