Let’s face it – this isn’t something that you would normally expect to do with your health. You get ill – leave it a bit to see if you get better and if you don’t, you go to see your GP and maybe a Consultant and pretty much leave it up to them to work out what’s wrong with you and how to make you well again. Yes – you might do the odd bit of googling but on the whole you hand things over to the professionals to sort.
The thing is that I soon learnt that there was very little point in going to my GP to ask them to do the same for me. There were obviously certain things they could help with – maybe hormone issues or specific joint pain, but the usual answer for the NHS is to prescribe a pill. So sleeping tablets for poor sleep, anti-depressants for the anxiety that having a chronic condition often brings, pain killers for joint pain. What they simply don’t have the time or understanding to do is to sit down with you and try and work out why your sleep has suddenly got worse or why your digestive system is reacting to lots of different foods. They can treat it with conventional medication, take bloods to rule out any common causes but that’s pretty much it.
So where does that leave you? Well to be honest – feeling pretty much on your own and scared! Googling became a huge resource for me – sometimes with good results sometimes not. There’s a huge amount of information out there on CFS/ME but the chances are a fair bit of it won’t apply to you. It’s overwhelming, sometimes not very reliable and it’s easy early on to stumble across descriptions which can be skewed to a particular way of thinking about CFS/ME. So for example the belief that it’s purely a psychological condition or a neurological illness. Then there are online chat groups and forums. The first time I found one of these I spent about an hour browsing through the chats and left the forum pretty much in tears. The description of how CFS/ME had changed people’s lives along with the underlying belief that it is impossible to recover left me with a very bleak picture of what my life was going to be like. It took me a while to work out that certain forums were also more affiliated to certain ways of thinking about the condition and I soon learnt to avoid certain groups. More recently I’ve become a member of the Optimum Health Centre’s closed Facebook group. Not everyone on the group has received treatment from the OHC so you get people with a variety of treatment experiences. It’s supportive and diverse which makes it feel like a safe place to be. Having said that I spend very little time on it – which is purely down to how draining I find being on my computer or on my phone. It’s certainly a place I’d turn to, and indeed have, if I had something I wanted advice on.
At some point as you walk out of yet another GP appointment that didn’t go quite as you’d hoped, you will probably reach the realisation that actually you understand your condition more than they do. This happened to me quite early on and actually since I stopped relying on my GP to fix me I’ve found my GP appointments to be more helpful. Maybe lowering my expectations of what they can actually achieve in their 10 minute slot needed to happen.
Over the past 6 years I have learnt that playing detective is sometimes the only way to work out what’s going on with my body. An increase in symptoms, a change in my sleep pattern, my nervous system being more on edge are all things that happen fairly regularly. When I was first struggling with fatigue an increase in symptoms would send me into turmoil. I immediately assumed that I was getting worse or that the condition was taking on a new direction. I had no understanding of the different things that can trigger a ‘crash’ other than that I’d probably done too much. So my normal reaction to a worsening of the fatigue would be to rest or limit activity. My reaction to my sleep getting worse would be to get upset and stressed. Early on in my diagnosis I had no idea that symptoms of the digestive and nervous system were anything to do with the condition so when those got worse it again just left me anxious and confused.
Playing detective without any understanding of CFS/ME is pretty tricky so it’s probably only something that I’ve been able to do over the past year. Even when I started to get a better overview of all the things in the body that can be affected by the condition it was still hard to relate this to my own CFS/ME. Gradually over the past 12 months I’ve built up a picture of how my body reacts to things and what impact that has on my symptoms.
I recently settled on a new set of supplements to calm my nervous system and help with my sleep. I also cut out my daily meditation and relaxation practices. I had begun to notice that after both practices the symptoms in my head and face were becoming really pronounced and that I was feeling pretty lousy for a fair time afterwards. Feelings of pressure, headaches, tingling and brain fog. None of it felt very nice. After talking to my OHC practitioner I decided to stop the practices to see if it helped with the head symptoms. I noticed that these symptoms straight away eased and that also my sleep seemed to improve loads. It was almost as if resting was giving my body more energy which was then going straight to my nervous system and giving me all the horrible symptoms whilst also affecting my sleep. About this time I also started taking an ant-histamine each day. My Nutritionist has been pretty sure that high levels of histamine is an issue for me and suggested trying an anti-histamine to see if it helped with my sleep. After a couple of weeks again there was a significant change. I started to get 7 hours plus sleep each night. I still woke up in the night but going back to sleep was so much easier. This went on for about a month and the difference it made to my days felt so good.
Then it suddenly changed again and I went back to waking up easily in the night and sleeping lightly. Having gone through a period of better sleep this felt like a real set back. I went through a couple of days of felling really despondent and convinced myself that I was heading on a downward spiral again. The first time I had a really bad night I looked at what I’d eaten – had I had too much histamine high food that day or were my blood sugars low? The next day I made sure that this side of it was all ok but yet again I had a bad night so I knew that the answer wasn’t with my diet. At this point I stepped back and looked at my daily routine and soon realised that was where the change had happened. Up until that week I had replaced my meditation and relaxation with a good 30 minute walk each day to calm my nervous system and also ensured that I was physically resting for an hour each day. That week our family routine had changed –my husband had been in for surgery and was pretty immobile. Although I felt like my activity had flowed naturally into doing a bit more I realised that I wasn’t really getting my hour rest and I’d also missed my walk on a number of days. I didn’t notice a change in my energy levels during the day so I don’t think it had really occurred to me that this might have an impact. But missing the calming walk and the rest had obviously upped my nervous system a notch which meant that the supplements weren’t working any more. I went back to prioritising this alongside the other things that I needed to do and it seemed to help.
Early on in my CFS/ME journey I wouldn’t have had the knowledge or to be honest the rationality to look at this change in that way. There would instead have been a knee jerk reaction, a fair bit of anxiety and I would’ve retreated into my head to try to fix it. The chances are this would’ve increased my symptoms and made the whole thing worse. My sleep would have continued to get worse as my anxiety about it getting worse increased! I’ve been there so many times and seen it happen! I feel very grateful that I now have a level of understanding that allows me to play detective when things change. Don’t get me wrong I really wish I didn’t have to. I wish there was a pill that I could take to sort things out or Consultant I could go to who would immediately give me an explanation and a resolution. But the reality of having CFS/ME is that these things don’t exist and sometime playing Sherlock is all that you have.