This is the section of my story that hindsight gives me such a different perspective on, I would do so many things differently if I knew then what I know now, but that's the benefit of hindsight isn't it. For those that form judgements based on the following, I don't think you could judge me any more harshly than I judge myself, it's been part of what has led me here to this point.

 

I had my first baby at 35 years old, I expected it to be hard, but it was harder than it needed to be. I'm that person that always pushes to achieve, to work hard and soldier on (I hear that seems to be a common trait amongst ME CFS sufferers). I had a fall and broke my wrist at 35 weeks pregnant, a week after I had surgery with metal plate and screws inserted, after a couple of weeks healing I started working from home until the birth. As the main breadwinner for my household with a successful career I felt the responsibility of continuing work to be able to maintain a good life for our family, it wasn't the sort of job I could get someone to jump into to relieve me either, we had arranged other staff to support me as best they could. I took about 8 weeks off after the birth and then began the juggle of being a working mum, with a flexible employer, the support of my husband and extended family caring for our son so keeping him out of daycare until approx 6 months of age. My son was not one of those babies that slept amazing, so began my sleep deprived life.

 

My wrist while technically healed with the help of the metal implants has hurt from the outset, it has a lump over the implant and continues to cause me pain now 7 years on. I am now waiting to have the metalwork removed, recent xrays clearly show the swelling around the tendons that are laying over where the ends of the screws are situated. 7 years of pain & inflammation?? Yet another thing I don't think I've taken seriously enough.

 

I continued to be a dedicated exerciser (HIIT training, running with my son in a pushchair, group fitness online classes), only taking necessary time off post broken wrist and for 6 weeks post birth.

 

At 38 I became pregnant with our second child. It was somewhere around this time I realised I was tired, always tired. At some point my midwife said I was low in B12 so I took some tablets, it never really helped. I developed gestational diabetes, it was controlled with a healthy diet, but I was still so tired.

 

We had another beautiful baby boy. But he slept worse than the first, he often woke coughing, he had a mildly underdeveloped larynx, nothing serious, but even when that seemed to come right, he still woke coughing. It felt like we hardly slept. We concluded he had food allergies (received through breastmilk), so I changed my diet. There was a daycare across from my work, so at 8 weeks he started there so that I could go across to feed him throughout the day while working at the office, with our other son at the same facility also. And so on and so forth we battled in and out of doctors for almost 3 years, he had ongoing viral and ear infections and the ongoing cough. Always I expressed my concern that the cough wasn't normal, the doctors said it was just viral. As he was close to turning 3 after two sets of grommets, then finally having his tonsils and adenoids removed I finally (after spending much more time on Google) requested a diagnosis for cough variant asthma, the trial preventative inhaler worked. Finally, we had a healthy 3 year old boy, he could sleep because he could breathe, all that time he had a life threatening condition.

 

It was at this point I noticed I was no longer healthy. I had what seemed to be intense hormonal symptoms, including nasty headaches and migraines, with intense fatigue and had started feeling depressed, I couldn't cope anymore. My B12 levels were tested, they were very low, then I tested positive for Pernicious Anemia, an inability to absorb B12 through my gut, all that time through from at least my 2nd pregnancy I had been low in B12, I started regular B12 injections, they definitely helped somewhat.

 

I went back on the contraceptive pill, it helped reduce symptoms to a point, the headaches became much less common and mostly more bearable. But I still really felt like something wasn't right, I had the full spectrum of ME CFS symptoms highlighted above (not that I knew that at the time). I produced a large volume of urine after going to sleep at night, I would wake multiple times despite restricting fluid & coffee intake & timings, I would then get really thirsty. Sometimes I would still get ridiculous headaches and I started to notice that just half an alcoholic drink would start a headache before I'd even finished it. My sleep was still rather broken and I would often feel at my worst when I woke up in the mornings. My joints had started hurting, quite strangely including my big toes. All the while I knew exercise was important for my health, it was the only thing I could control to benefit myself, HIIT training, weights, running, online group fitness classes morphed into dance classes and yoga based workouts, I just couldn't keep it up anymore. At some point I realised the muscle pain/fatigue/delayed onset muscle soreness was always there. I searched extensively online for explanations on DOMS trying to find answers. The vast majority of information simply says it's just your muscles getting stronger, it's natural. My gut was telling me this wasn't the case for me.

 

At some point amongst all of that I knew I had to change the way I exercised, I did my yoga instructor training because all the yoga I'd tried wasn't feeling quite right either. This was the single most beneficial thing I have ever done for my health, and it interweaves through my investigations with my doctor over the span of 1.5 years, you'll hear more on that.

 

Blood tests showed a very high aldosterone/renin ratio (this impacts salt, fluid, kidneys & blood pressure), but other tests showed nothing wrong with that system, two endocrinologists dismissed me, then I found on Google a study that said in some cases the contraceptive pill I was on could cause aldosterone to spike, I changed pills which leveled that out. I also started taking desmopressin for the nighttime urination, my symptoms seemed to calm a little for a while. There was still a sense that something just wasn't right, I had this feeling something big was coming, but I continued my yoga studies and developed a yoga practice that suited me. I then felt inspired to create the Yoga Time Warrior online platform based on my style of yoga that I couldn't find anywhere else online, high strength but deeply calming without the more intense chanting & spiritual aspects. It continued to make me feel better than I had in a long time and putting my spare time into the platform felt like a way to convert negativity into something positive that could help others.

 

Eventually, this past summer I went wakeboarding again after not doing a lot the prior summer due to my symptoms. The first time I felt stronger than ever, my yoga practice had made me so much stronger than I ever remember. I started to notice my sleep was back to being not so great, I didn't think much of it. A few weeks later we went wakeboarding again, we camped out by the lake that night, I woke during the night feeling sick, the DOMS was kicking in, I had a smashing headache, I was so tired, but I couldn't sleep. I went to the doctor that week, we arranged more blood tests, I remember saying, this muscle soreness isn't right, there is something to it. We went wakeboarding again the next weekend and camped out again, that night was intense, if I could think of any way to describe it would be to say I'd been injected with snake venom, my muscles burned, I felt sick, my head pounded, I couldn't sleep.

 

I finally found something online that linked the muscle pain, the feeling of lactic acid build up with ME CFS, I started reviewing symptoms, website after website, I ticked so many symptom boxes. I went back to my doctor to review the blood results armed with my checklists, she agreed. I had odd blood results, things that fit with the symptoms but we'd ruled out everything else, so it's settled, I finally have my diagnosis. Not only that, as I'd developed my yoga practice I had had a stretch of 6 months with only mild symptoms, I knew I could get this under control.

 

Through every flare I've had my sinus allergies would flare up, my joint pain would flare up, my desmopressin dose would have to increase, I always crave salt and I'd always feel thirsty with what I could describe as a feeling of dehydration, my digestion would slow right down (constipation). I would also often have heart palpitations, which are just a little bit scary! I was always so tired, when I'm tired like that I get really hungry and I put on weight. Even on those nights when I felt like I might have slept well (without lots of wakeups) I would still wake feeling worse than when I went to sleep. I'd feel crap until the afternoon when I'd start to feel better, I'd go to sleep & feel crap all over again. I've still maintained my job, I still do what is required of me, but I know I don't perform how I used to, some days I feel like a waste of space.

 

I feel like there must be some tendon inflammation because at times I feel like my joints are on the edge of tearing apart. I did exactly that a month ago, reaching to grab something for the kids I heard a different crunch in my shoulder. The pain from that has caused a significant flare up again. Always redesigning my yoga practice to suit me along with advice from a physiotherapist I'm working through it, but it's not easy. I can now see how significantly it's impacting my social life, I haven't been that social in a long time, but now even two hours out for dinner is a significant outing for me, that I pay for physically.

 

I'm still recovering and I've learnt that every sufferer is different, there is no one stop shop for recovery for everyone, which is why hearing other people stories can be so helpful. Up next are my points of advice for recovery.