“You’d never know you have health conditions.”
Whenever I’ve chosen to open up about my health conditions, this is the reply I usually get. And if I’m honest, that’s how I like it.
I have M.E (otherwise known as chronic fatigue syndrome) and neutropenia (a very rare blood condition). For some reason, I’ve always seen admitting to this as a sign of weakness. As though, by having these health conditions, I am less of a person.
This might sound daft, but I hate showing weakness. From experience, when I tell someone about these health conditions they will either treat me like I’m made of cotton wool…or like I’m desperate for attention. Neither of which are things I’m comfortable with, so I’ve chosen not to tell most people.
I did write about this on my blog a few years ago, but it’s rare for me to tell someone face-to-face, unless I feel like it’s ‘safe’ to open up to them.
Over the past few months, my health conditions have been trying to rear their ugly heads, and it’s got me thinking I should write more about them on my blog.Although coping with something without anyone knowing makes us all feel like we're super strong, having the courage to open up and tell people about your struggles requires far more strength. Click To Tweet
So I’ve decided to stop being a stubborn git and talk to you more about my health conditions, in the hope that what I’ve been through helps someone in a similar situation.
So here goes.
By the way, if you want to read more about my personal story with my health conditions click here.
For now though, I’m going to talk about what’s been going on in the past few months and how I lead a generally active lifestyle with my health conditions.
I have M.E (otherwise known as chronic fatigue syndrome), and neutropenia, which is a very rare blood condition where you have a severely low number of white blood cells.
I’ve had both of these health conditions for so long that I know exactly what the warning signs are for when they’re trying to creep back into my life, and they’ve definitely been trying to recently. I say trying because I refuse to let them ever completely take over like they did years ago.
I was bedridden, and at my worst couldn’t even lift my head off the pillow to sip a drink. My Mum had to put a straw in my mouth and hold it there for me. She even had to carry me to the toilet and hold me upright when I needed to go!
I won’t EVER go back to that. It’s taken years, but I class myself as healthy now, and have done for quite a few years.
These days, although I get occasional times (like now) where my health conditions try to kick my ass, most of the time I have them kissing my ass.
And I want to tell you guys how I’ve got to where I am now. But first, let me start by saying (in the way of a disclaimer) that although this works for me, there is no guarantee it will work for you. I just think it’s worth sharing what worked for me in the hope it might help others. Please do ask your doctor’s advice first though. I’m not medically trained, and I genuinely did ask my doctor what he thought was best for me every step of the way on my journey to recovery from M.E, and during my tougher times with neutropenia.
I also feel it’s necessary to explain that my neutropenia has always been mild. My neutrophil count is typically between 1.4-1.8, so verging on the lower end of ‘normal’. So if you have neutropenia and your counts are a lot lower than this, again please seek your doctor’s advice before trying anything I’ve written below.
So what worked for me?
I started getting my body moving
The best advice I was ever given regarding coping with M.E was when my doctor told me to try to exercise. I thought he was nuts. I mean, come on, at that time I was struggling to get out of bed most days! And I don’t just mean being lazy – there were days when I physically couldn’t lift my head off the pillow.
Anyway, I decided that I would listen to him because y’know, he is a doctor.
So I set myself the goal of walking from my bed to my bedroom door and back each day. At first, my Mum helped me, and there were days when I couldn’t manage it. But eventually I was able to do it unaided…which was a huge achievement.
I then started gradually increasing the distance of the walks as time went by. And when I say gradually, I don’t mean forcing myself to do more each day or even each week. I very much listened to my body, and did this over many months until I eventually reached the point where I actually went for a walk outdoors once a week. This didn’t all happen within a short space of time – I was on and off bedridden for two years.
Each day, I assessed how my body felt before trying to do any kind of physical activity, and I still very much apply that method to my training now.
I listened to my body, and actually paid attention to it
Fast forward about 15 years, and I’m now training like a badass (if I do say so myself) five or six times a week! It didn’t take me that long to reach this stage, I’ve actually been training like this for a long time. However, I can’t remember exactly how long it did take me to start feeling like I was well enough to be active again.
I’ve reached this stage through a lot of trial and error, and I’ve learnt the hard way how important it is to actually listen to my body. Some weeks I’ll feel fine and go to the gym five or six times, but other weeks my legs will feel exhausted just from running upstairs to go to the toilet. So on those weeks I’ll listen to my body and maybe only do one or two workouts (if it feels right).
I’m sorry I can’t give you a magic fix, but it’s just a case of trying to add little extras in and seeing how your body copes, because everyone is different. I wouldn’t advise rushing in to anything though because, as much as I know how frustrating having health conditions which affect your energy levels can be, if you do too much then you’re more likely to set yourself back to feeling worse than you did before.
Maybe keep a diary to see how different exercises affect you and then look for are any obvious patterns.
It’s crazy writing this now because it all happened so long ago and it genuinely feels like that was a different person. But I think it’s important to let you know that when I talk about exercise (like my doctor advised) it doesn’t just mean jumping straight into a HIIT class (because that would be ridiculous)! It just means moving your body in a healthy way.
I sorted my diet out
For years, my diet had consisted of pretty unhealthy things, and I never thought about how a lack of vitamins and minerals might be affecting me. Crazy when I look back!
I do my best to eat as healthy as possible now because I find that healthy food gives my body a better quality of ‘fuel’, and I feel so much better. Don’t worry though – I do still have chocolate and ice cream occasionally, because I can’t imagine a life without chocolate!
Anyway, once I finally started to make healthier choices with food, I could see small improvements in my energy levels. And over time, those small changes became pretty huge.
I don’t know if it’s a coincidence, but I also found that cutting out gluten majorly helped me. Please don’t mistake this for me telling you that gluten is the cause of M.E, or anything daft like that. I’m just letting you know my personal journey.
I went to see my doctor a few years ago as I was experiencing some *ahem* undesirable digestive issues, and after a few tests he diagnosed me as gluten intolerant.
Even now, if I accidentally eat gluten, my energy drops majorly for a few days. I don’t think gluten is in any way linked to M.E, but as I have an intolerance to it, digesting gluten definitely has an impact on my personal energy levels.
The gut plays a huge part in overall body health, and obviously not everyone has food intolerances, but if you are experiencing any dodgy digestive issues alongside your health condition, it’s worth asking your doctor to test you. At least that might be one less thing zapping your energy.
I made sure I got enough sleep
As soon as I started to feel better I was tempted to just go crazy and sacrifice sleep so I could fit in all of the things I loved to do, but I (again) learnt the hard way not to do that.
There have been plenty of times when I’ve put sleep at the bottom of my priority list. I think it stems from feeling upset at having to miss out on a lot while I was really ill during my teenage years.
But I’ve learnt the hard way that if your body is telling you to rest, you need to do it. Trust me on this one.
Even someone who doesn’t have a health condition will find their health deteriorating if they’re not getting enough sleep. So anyone trying to recover from something which tends to impact energy levels (like M.E and neutropenia) NEEDS to get plenty of sleep.
I’m a firm believer in the power of napping too. In fact, I fit in a ‘power nap’ whenever I get a chance – in between work and the school run, and on long journeys (obviously when I’m not the driver).
Seriously though, don’t force yourself to stay up until a socially acceptable time for bed, if you need a nap have one.
I stopped being so hard on myself
One of the things I found most difficult on my recovery journey was to stop being mad with myself for taking so long to get better and not having the energy my friends had.
I just kept getting frustrated that everyone else was leading ‘normal’ active lives and I was over here trying to figure out if washing my hair would leave me with enough energy to make it to my doctor’s appointment later that day! Not even exaggerating.
But then I realised that putting pressure on myself wasn’t going to help. It wasn’t going to get me where I wanted to be any quicker. It was just going to make me feel even worse! So I did my best to learn to just accept the situation for what it was and be proud of my victories, no matter how small.
Besides, the very nature of these health conditions is that you’ll feel fine one day and then absolutely junk the next, so don’t freak out about that – it’s normal with both neutropenia and M.E.
I surrounded myself with a great support network
My family played a big part in my recovery, particularly my Mum. Whatever you are going through in life, I think it’s vital that you have people around you who will support you and help you during the times when you’re doubting yourself.Steer clear of people who don't understand that sometimes you're finding it hard to even brush your teeth (and yes, I remember how much that used to make my arm ache). Click To Tweet
Gravitate towards people who are cheering you on when you tell them you managed to shower and get dressed without having to take a break in between. Because guess what… Those are the kinds of people who will get excited with you when you tell them your news. They won’t belittle you for feeling proud of something they feel doesn’t deserve celebrating – they’ll have your back.
I learnt to minimise stress
I know, I know, this is a pretty difficult thing to achieve. BUT I’m not saying your life needs to be 100% stress-free. I’m just advising you to remove as many stress-inducing things from your life as possible.
This doesn’t mean you have to go on a major cleanse of anything you feel might get on your nerves, because if you’re anything like me when you’re tired that would be most things and people. I’m just advising you to stop worrying about stuff that doesn’t really matter.
I used to be a total stress-head about everything, whereas now it actually takes an awful lot to annoy me because I look at things from a different angle. I’m not saying I’ve found inner peace (I wish), but I just don’t let things bother me as much as they once did. So even the unavoidable things that once had the potential to cause me stress no longer bother me most of the time.
Meditation is an amazing help for this. You don’t have to sit cross-legged by a flowing river next to a unicorn who’s playing acoustic guitar, although that would be incredible. You can just meditate in your bed or on the sofa – anywhere as long as you can get five minutes of peace. I highly recommend the Headspace app. Not sponsored – it’s just one of the things that helped me learn how wonderful meditation is, and made me start looking at things in a different way.
I started believing in myself
There’s a lot to be said about the effect of a positive mental attitude. Seriously, if you go into something telling yourself you won’t be able to do it, then you’re setting yourself up to fail because you’ve already got to convince yourself before you even start pursuing the thing you set out to achieve.
Yet, if you believe you can recover from this, then you’re starting out with the right mental approach. Sure, it’s normal to doubt yourself at times, but do your best to have faith in your ability to overcome this and to take control of your health.
When I was at my worst with my health conditions, I used to think I’d never get out of bed again. But now I live a more active lifestyle than I ever could have dreamed I would be able to!
Never give up hope. You will have good days and bad days. Actually strike that – you’ll have amazingly terrific days and catastrophically crap days. BUT if you listen to your body and take your time then you will be far more likely to recover from this than if you ignore your body’s warning signs and just give up.
M.E and neutropenia don’t ever go away, but it is totally possible to live a happy, healthy, active lifestyle with them both. I am living proof of that!