Why am I writing this post?…well to be honest I never planned to but I was a little blown away by the response to my 30th Birthday Instagram post. I listed how much had happened in the last decade and one of the things on that list was overcoming Chronic Fatigue Syndrome. I didn’t think much of it but so many people asked if I was going to write a post about my experience and what my tips were that I felt like it probably justified me giving some time to explaining. So often these days it seems like a distant memory, something I can forget I had, possibly because I’ve stopped fearing it will come back. Having said that, when I do take a moment to dwell on the experience I remember just how awful and limiting it was. My whole life became very different and it’s effects were far reaching, so recalling it all makes me incredibly grateful to no longer suffer from it. Recovery was a massive answer to prayer, prayers I always knew might not be answered with the outcome I craved.
Let me start by saying, as I do with most of these ‘Behind The Screen’ posts, that I am no expert! When I said ‘overcoming’ CFS I realise this is probably a bad way of expressing what happened because I haven’t found the magic solution that anyone can tick off and be healed. It also wasn’t my efforts that restored me fully, that was a gracious gift from God but I have learnt some things along the way for sure. CFS and ME are notoriously misunderstood conditions, not just by the general public but by the entire medical profession that really struggle to pin it on something particular and don’t seem to have any tangible answers. For this reason it makes the whole experience so confusing and frustrating even aside from all the physical effects. It’s constantly debated as to whether it’s a physical issue or a psychological issue. Some doctors think one or the other and some think a mixture of both and this sitting on the fence mentality can often make it very hard to even get a straightforward diagnosis. I remember feeling so powerless!
I’ll take you back to the start. I hadn’t really had energy issues throughout my life and throughout uni. I was a typical student, on nights out until crazy hours 4-5 times a week. I didn’t even think about energy or sleep or generally taking care of myself for that matter. It’s after uni that I can’t quite pin down what happened to my energy levels. I had a virus which then seemed to have an ongoing effect on my tolerance even after recovering from the virus itself. I suddenly needed a lot more rest and sleep, even though I had nothing to wake up for in my job search period. I became known as a bit of ‘woos’ by my family and friends, relishing an early bedtime but I can’t quite tell if that was the start of a slow downward spiral or not. CFS is often talked about as part of a post viral reaction from your body, where it never returns back to it’s normal energy levels because it thinks you still need the extra rest. It could have been that but whilst I noted a definite change, it didn’t become really apparent until about a year and a half on from that.
I’m not naturally a lazy person, in fact my tendency is to over burden and busy myself with things Since starting my job, half a year after graduating I was in a cycle of doing a 3.5 hour round commute each day into London and back from my parents house in Hook. I would wake up at 5.45 to get some exercise in before work and usually coming back to go straight out with friends in Basingstoke, whilst munching dinner on the train and booking up my weekend with a string of meet ups (sometimes three in one day. At the same time I threw myself into anything I could do or help with at church. My only stipulation was that I needed to be in bed between 9.30 and 10 otherwise I knew I’d start to panic about how awful I’d feel the next day. I was exhausted all the time and remember my Mum even sending me to the doctors to get my iron levels checked but they were all fine and dandy. I think I might have been part of the problem in kicking myself into a corner I couldn’t get out of. I already had low energy levels and yet as with most things my mentality was just to push on through. I hated being busy but I was scared of not being busy at the same time because it made me feel empty and would undoubtedly mean I needed to face up to some of the more stressful things that had happened in my life.
Things started to go downhill pretty quickly and my constant feeling of exhaustion led me to tears so often. I started doing less because I didn’t really have a choice but felt like I was in a constant fog. I was booking random days off work to help me get through working weeks. Those days were intentionally for being in bed or pottering around the house. I was aware something was wrong with me but I was tempted to think I was just a bit of a lightweight who couldn’t cope with normal life. At this time I had started dating Nick and had booked a week off in late Summer with the intention of seeing him but also getting more rest! He made sure that I was taking it easy and I really was but in that week I think I saw the extent of how abnormal I was feeling. I was constantly plagued with awful headaches, often in the middle of the night or late afternoon and would have dizzy spells all through the day. Sometimes I had to sit in a car for a while before getting out as my head felt like it was spinning and I would get really strong palpitations. I couldn’t get enough sleep but it didn’t actually seem to help and the concept of feeling refreshed was a distant memory at this stage. My joints starting to ache almost like a viral symptom, which made it feel even harder for my body to do anything and the brain fog was so bad I realised that it meant I was unable to really focus on what anyone was saying for longer than a few seconds. I hated that. I could just about deal with how it was effecting me but not how it effected my interactions with other people.
At this point I knew I needed to go to the doctors but this sparked a long string of really disappointing appointments that left me feeling so frustrated and thinking I was going crazy. They asked really patronising questions each time like was I eating a balanced diet, getting regular exercise and…get this, was I going to bed at a decent time! I couldn’t get enough sleep at this point and I’d started to have dinner when I got in from work and go straight to bed afterwards. They ran all the normal blood tests for thyroid and iron and vitamin levels again etc. I felt quite faint a lot of the time anyway at this point but I’ve always been totally fine with having blood taken, however not this time. Those palpitations returned in full force with nausea and I passed out and the friend who’d taken me (a trainee nurse) was a bit concerned at how out of it I was for the rest of the day and really didn’t want to leave me alone. All the while I was just hoping that something would come back with a red flashing light from those tests, just so I could understand and get it treated but sadly nada.
It took about four different appointments with different doctors for one to actually do anything but even then it was the strangest semi-diagnosis that involved him sliding me a leaflet about CFS and ME, telling me to steer clear of looking anything up on the internet and prescribing me anti-depressants. I walked away from the appointment questioning if he was actually saying that this is what I had. The words CFS or ME had not actually left his mouth, and yet I was reading a rather dated looking leaflet about it all. I was a bit freaked out by the antidepressants but after some research realised that Amitriptyline is barely ever prescribed for depression itself but rather used to help you sleep more deeply and ward off the headaches. The pharmacist told me I needed to up my dose slowly and then hopefully there would be a point where I could lower the dose gradually once I started to feel better.
I had to start saying ‘no’ to many more things, whether that was friends or commitments at church, which I found so so hard. It was a season of having life totally stripped back and shedding every little thing I had possibly been finding my identity in and most of all I couldn’t be ‘busy’. I think I’d almost been proud of running around having a busy life and being able to say to people ‘I’ve been busy’ when asked how I was, as if I was superwomen. Now I had no choice but to do the total opposite and swallow the humble pill it was to have people baffled by what was going on with me and the possibility of them actually just thinking I was lazy. I had so many conversations where people asked what was up and their response was, ‘ I get tired all the time too’. I understand, they obviously didn’t quite grasp how different and all encompassing this was, not to mention a whole different kind of tiredness but it was a constant battle to remind myself that I didn’t need to care what people thought. I know that sometimes I offended friends too by saying ‘no’ to meeting up, which I hated, having invested so much in my friendships. Work told me I needed to work from home 3 days a week and only attempt to travel in on the alternate 2 days until I started to feel better. Sadly some of my days in the office were non starters too or I had to come home because I was literally passed out asleep at my screen. At this stage I lived with friends, only a 5 minute walk from Basingstoke town centre and sometimes that was even too much for me to do. I’d have to sit down on various benches along the way, catch my breath and rest my aching legs.
My life was essentially a shell of what it once was, which made me feel low a lot of the time and yet sometimes I think it’s so helpful to have so much stripped away in order to have no other option than to cling to God. It doesn’t make it easy but I could see him working for me in love through this period, prizing me away from things that I found my contentment and security in and showing me that it was foolish as I could only ultimately find those things in him. As a ‘doer’ and at the time having been very used to being self sufficient it was a shock to the system to have to rely on not just God more but on other people too. I had to swallow my pride and let people do things for me, give me lifts places and fetch things for me as well as listening to them when they told me I was still being stubborn and doing more than I should. It was hard but a process I needed.
I spent a lot of time at home, sometimes my eyes wouldn’t stay open and my body hurt so much that I couldn’t get out of bed. Other times I would be working on small creative projects on the sofa in between rests. I was increasingly aware I was fragile and my attempts to just think positively, as if there wasn’t an issue didn’t actually solve anything. If I tried to do more I would feel the repercussions the next day. I remember going on a quick walk to Tesco’s in my lunch break one day at work. This was only a 3 minute walk and yet I got just around the corner, felt dizzy and had those pesky heart palpitations which led to me passing out only to return to reality, sprawled over a parked car bonnet. Rather than thinking I could still take over the world and do what I like, I begun to get anxious about doing too much and worrying about how far I might get before feeling I couldn’t go any further.
About 4 months after the CFS had hit me in full, Nick and I got engaged. My dad questioned whether it might be better to wait until I was better to plan a wedding but the problem was that no one knew how long it would go on for. That was one of the most frustrating things and I was well aware that it may well be something I had to live with for the rest of my life. This was the hardest part in trusting God’s perfect plan. I knew that suffering sharpens us and I could even see the good it was working in me spiritually at the time but holding my hands up and trusting him in his unknown timing was so hard and a life spent struggling with this did not sound like something I was strong enough for. I certainly knew I couldn’t put everything on hold in the hope that I would be back to normal anytime soon.
Lots of people ask me what my wedding was like with great expectations, knowing I design wedding stationery and love DIY details and styling but sadly the reality was that I didn’t have the energy to pour into those things in the way I would now. It was of course lovely and in some ways made it more about celebrating the commitment itself rather than executing every detail to my high standards. I didn’t have the energy to care much and was probably the least bridezilla like bride because so often I just said ‘yes’ for an easier life.
I remember that even going to try on wedding dresses was a big excursion I had to work myself up to. By the end of it I was totally exhausted and had to go straight to bed! Every day involved so much thinking about when and how to rest to make sure I didn’t hit a worse patch. I was increasingly worried about the wedding day itself, trying to fathom how on earth I would get through a whole day with not very much sleep and an overwhelming amount of people to talk to. Thankfully I did see some improvements in the 4 months before my wedding. They weren’t huge but occasionally I’d have a good day where I still felt worn out and hazy but caught a tiny glimpse of what normality felt like. There seemed to be no real pattern to it as a day after I could be back to feeling dreadful again. However those brief moments provided little fragments of hope that I might be able to feel better again one day. The wedding day came and miraculously I made it through and thoroughly enjoyed it. I definitely think I was running on complete adrenaline as the day after I crashed and felt awful, but we even told our driver to take us home later on the wedding night. We’d preplanned leaving at 10pm because we just couldn’t imagine me making it past that point but we postponed for at least another hour as we were having to much fun and I was so aware this would be the only time I had all these wonderful people in one place!
I was still suffering the first 4 months of marriage but there seemed to be an increasing number of better days. Once again there seemed to be no pattern to it that I could tell. Nick was very sensitive to making sure we went to bed early and helping me not to do too much, particularly when I had a couple of days feeling marginally better and I’d revert to my old over optimistic self and want to get carried away and take on more. I continued to find people’s comments and responses hard to deal with. It was the notion that if I just put my mind to it or prayed harder for healing, I could get out of this funk. They were well meaning but I honestly felt powerless as even on the better days I didn’t know what I was doing right. I felt so confused thinking about whether it was more psychological than physical but then the psyche has so much to do with your physical symptoms, I mean that’s why things like stress so often heighten conditions. Having said that it’s not usually the whole story and just because it’s linked to the psyche doesn’t mean the physical response isn’t any less real. It was such a head muddle but I did start to wonder about going down the route of CBT as I felt like I’d try anything at that point. I’d heard very positive things through friends of friends about people that had struggled with CFS for a while and then done ‘the lightning process’ and been miraculously cured. The lightning process is an intense 3 day programme based around cognitive behavioural therapy to retrain your brain to deal with the acute stress response that the body experiences. I started to think about it seriously although I have to say I did find a more balanced review over time where a fair few people had said that it hadn’t really worked for them.
Then suddenly at Christmas that year I had my standard 2 weeks off and I was still going slow and taking it easy but over the course of the two weeks I began to notice a very distinct change in how I felt so much better. I didn’t want to get carried away and so I just put it down to having time off from any work but it did continue right through the whole Christmas period. I remember we even went for dinner and celebrations at a friends for New Years and we didn’t get home until about 2.30am! Of course we slept until about 11am the next day but I didn’t feel awful and didn’t revert back to all my symptoms. That was in comparison to the year before where I had to be taken home from a New Year’s Party early to be in bed by 10pm and even that was a big deal and made me feel terrible the next day. I was so confused at what on earth was going on and just kept on holding myself back from a doing a crazy dance and running around the neighbourhood screaming I’m healed. I was certain it wasn’t going to last but I returned to work, still doing my 3 days from home but the way I felt didn’t seem to change. It was so bizarre to remember what it was like to feel normal and to experience standard tiredness again. The kind of tiredness you get when you’ve had a late night or had a busy few days. I can assure it’s a very different feeling with CFS!
I was able to focus for longer periods of time as the brain fog got much better and the palpitations, achey joints and headaches were no longer there and I started to slowly decrease the Amitriptyline until I was no longer using them either. My initial instinct was I’ll just ditch all my days working from home and get back in the office full time but Nick sensibly encouraged me to build that up gradually too. I was waiting for the point when I’d suddenly decline again but it never came and I couldn’t have been more thankful. It’s so easy to forget what a gift it is from God it is to have energy and your health. When you have them it’s just a daily given that we take for granted but having seen the other side I was almost skipping to work each day!
So how did these quick and recovery happen? Well, I wish I had the answer to that and I bet any of you reading, currently suffering from CFS/ME would love for me to pull out the magic card right now and transform your life. Sadly I can’t do that and it was something that baffled me for a long while often mixed with fears that it would return. I certainly had to rewire my thoughts a bit and realise I didn’t need to think about everything in terms of how much energy I’d expend anymore. Sometimes I wonder if there is anything in CBT as an aid for recovery when we experience unhelpful responses to stress. It seems interesting that I started to feel so much better in a period of total relaxation. I’m not suggesting CFS sufferers just take a holiday and boom!…all your woes are gone but I do know that during the time I had it I was incredibly stressed. There was trauma from my past that I had only marginally acknowledged throughout that period. It was something that I know was constantly bubbling at a low level and more than likely putting my body in a constant stress state. Is it ironic that it was something I only managed to face up to in early January, just after that Christmas break? When I did start to process it, it was a massive emotional release. I mean it was incredibly painful, full of tears, nightmares and a long stretch of grief like I’d never ever felt before. It’s actually stuff that still rears it’s ugly head and I have to address all over again but it’s out in the open and I’ve admitted it’s effects over and over and allowed myself to feel the pain. Dealing with what I can only describe as PTSD is sure to have had an impact on the stress levels within my body. Living with a heightened stress response as if always under threat is sure to take it’s toll.
Another thing that has gone back and forth in my mind, since completely overhauling my diet is whether this was having an impact on my CFS. Incase you’re not familiar with the back story I have struggled with digestion issues my whole life and they seemed to really come to a head in 2013 when I slowly became sicker and sicker until a year later I was so ill that it was totally debilitating. Think IBS symptoms on crack! Diarrhea and painful bloating everyday along with sharp stomach cramps, coupled with extreme vomiting every few days, rashes, constant acid reflux and parts of my face swelling like I’d had some kind of botched botox. There were stints when I couldn’t get out of bed because I was so tired and my joints ached as if I had a virus and when I wasn’t actually being sick I had constant nausea that put me off even eating, leaving me looking gaunt and less than healthy. I was miserable and hounded the doctors to try and get answers to no avail. After various appointments, visits to the nutritionist, a gut specialist, giving up dairy, blood tests and an endoscopy and colonoscopy, I reached desperation point and started to research nutrition myself. That’s when I came to understand that I may well have a severe intolerance to gluten which made a life changing difference only a few days into cutting it out. I did also come to realise that wasn’t enough as I’d completely wrecked my gut over the years and had to effectively adopt a paleo diet to feel totally well. That was another moment of awe when I realised what normal, healthy people felt like after a meal! It was something I’d never experienced within my memory.
You’re probably wondering what this could possibly have to do with chronic fatigue syndrome, well I experienced a particularly bad patch with my digestion through my period of CFS. It definitely wasn’t as extreme as the above 2 years but it was distinctively worse than others and there was definitely some cross over in symptoms. So that hazy brain fog I spoke about I’ve since linked to gluten. Did you know that there’s a much greater percentage of people with a gluten sensitivity that experience the effects solely in the brain rather than their gut? How mad is that? It was the first thing I noticed went when I gave the stuff up and it was at that point I realised that I’d always had brain fog throughout my life, it was just present at varying degrees at different times. Another thing I noticed when I hit my bad patch above was how exhausted I felt. Sure, not being able to keep food inside of me for long wouldn’t have helped but I can only compare that ‘I need to sleep now’ feeling along with the all over body aching to chronic fatigue. It’s the kind of feeling you have when you have a virus but lasts longer. There were times in that patch where I actually started to worry that CFS was returning and it genuinely scared me. At the time I hadn’t drawn the link between the digestive stuff and those viral-like symptoms. I’m not necessarily suggesting that gluten was the cause of my CFS but I do wonder if it played a part. I’ve since read a lot on studies where the two things are linked along with other conditions like Fibromyalgia and it’s actually really interesting. I can safely say I haven’t experienced any of these symptoms since I changed my diet 20 months ago, aside from those awful times I’ve had gluten by mistake.
So those are my unformed thoughts on my experience. Like I said I’m not medically trained and I certainly don’t have the answers but I find the whole topic so interesting. I think what I do know for sure is that my body was under an incredible amount of stress at the time through unaddressed emotional issues and also my digestive issues which would have had my body in a constant state of stress. Why did things get considerably better when they did for a while?… I don’t really know but I’m so thankful that is no longer something that plagues my life and here’s hoping it never does again. I’ve since met so many other people that have suffered with periods of CFS and some still do. It’s crazy how so many people are affected by it and to all of you who are suffering, I really hope that you gain healing. I know how awful the not knowing when it will end was and I know there are people out there who have it even worse than me to the point of not being able to ever leave bed and having to use a wheel chair. It’s a condition I would never be flippant about. Here’s to much more research into it all and hopefully one day there will be a clearer explanation for this debilitating syndrome and a treatment that we can have confidence in!