Seeing a CFS/ME Specialist // Thursday Thoughts!

Hello everyone!

I've mentioned briefly a few times my health problems of late but I've never dedicated a whole post to the topic before. In this post I'm going to be sharing my experience of seeing a CFS/ME specialist for the first time in the hope that I can reach out to people in a similar situation. Also, it's a condition that's definitely not given the awareness it needs. What I'm trying to say here if that if this post doesn't sound like your cup of tea, that's okay - I have plenty of other blog posts for you to browse but you might learn something new by reading if you'd like to.

Here's my account of my first visit to see an ME specialist!

seeing an m.e. specialist cfs myalgic encephalomyelitis chronic fatigue syndrome what to expect health

I'll not go through the ins & outs of the symptoms I've had over the past few months as there are quite a few & we'd be here all day - maybe in another post! Basically my health has been in decline since the end of last year meaning I haven't been able to do the things I usually could, and being 18 that means mainly school. My A Levels will have to be put on hold this year which is a bit of a nuisance but I've come to accept that nothing can be done about it now.

Since January I've been to countless doctors appointments and had numerous blood tests taken, however despite that I've had no conclusive diagnosis. I've been given tablets for various symptoms but nothing seems to aid my 24/7 exhaustion & all over pain. Taking everything into account my doctor suggested that it could possibly be Chronic Fatigue Syndrome, which, having done plenty of my own research I agree that's exactly what it feels like. Annoyingly it's an illness shrouded in doubt, in fact lots of doctors disregard it as a real illness at all. (cue anger on part of all people with it, the pain is very real!)

Anyway, that meant that there are actually no specialist doctors available on the NHS anywhere close to where I live, hence my GP referred me to see specialist at a private clinic. I'll not go into how frustrating that is because genuinely, we would be here all day! At the end of the day, I'm just thankful there is someone I can see, y'know?

So the day finally came when I headed to the clinic with my parents, that day being yesterday. I was incredibly nervous, not knowing what to expect as well as not knowing if I'd come out of the appointment with any clearer picture as to what's going on with my health. We had to wait in the waiting room for a very long time and anyone with chronic pain or fatigue will know that is a serious test! Honestly, I had no idea how much energy was put into simply sitting up before this whole thing started!

When it was my time to see the specialist, he apologised profusely explaining he'd been booked up with too many appointments that day. It would've been very easy for me to think negatively about this but one positive I've noticed since being this ill is that I tend to adopt a "things happen & I'll just accept that" attitude.

My parents accompanied me into the room & the doctor himself was very friendly and instantly made me feel at ease which I was grateful for! Unfortunately however, there had been some kind of mix up and he hadn't received the letter from my GP so he didn't have all my info nor did he have the list of which blood tests I'd had. This kinda meant my first appointment wasn't as productive as it could've been but it's obviously not something that happens often, so if you're going into the same situation as I did don't worry!

He asked me to explain everything from the beginning which I was dreading as it's been a long time, lot of things have happened and it's hard to remember every detail! Also, brain fog is one of those really irritating things that can accompany CFS. Thankfully I'd written out a list of all my symptoms the night before that I could hand to him and talk through - this is something I really recommend doing if you're in a similar boat!

I really wanted to paint the most accurate picture of the whole thing as I could, after all he knew nothing about me! Essentially that's what he was trying to do - build up a timeline and picture so he could understand. It felt incredibly reassuring to finally be able to talk to someone who knew and understood what I was going through.

He then asked me one question that really threw me:

"What kind of girl are you?"

I was quite confused and told him I didn't really know what he meant, to which he replied he thought he already knew. I was a bit taken aback if I'm honest! He said he could tell I was a conscientious person and at that point I was still a little confused as to what he meant and how he could tell.

He then checked to see if my glands, splein and liver were swollen (which thankfully they weren't) and then he asked if I had any questions. I said I knew it wasn't an easy question but how can life with CFS be managed? He replied saying it's all down to each individual but rest is important. It's important not to over exert yourself on good days. Also, my mum asked if there were any diet changes that could be implemented to help to which he answered no, not really. He said quite frankly that there's no 'magic bottle of something you can take which will sort things out' but obviously a healthy diet is preferable.

He also further explained why he asked me what kind of girl I was. He said that it's a common trend in people who have CFS to be active people with a sense of purpose to do well. Interesting, I thought!

For a first session, I left with mixed feelings. On the one hand he was lovely, very understanding & willing to help. However on the other hand, I can't help but feel the appointment was quite unproductive - more of a 'get to know each other' than anything else but that's down to the irregular circumstance of the letter going missing. I did leave with the hope that my next appointment with him will be more constructive as he'll be ruling out the possibilities of other illnesses with more blood tests.

It wasn't until I was in the car drive home afterwards that I really began to think what he meant about the type of person I am. I never would have thought it before but conscientious is probably the most accurate way to describe me! I constantly feel like things need to be done right, fairly & to a standard - I hate thinking I've done a half-assed attempt at something! I know this is a trivial example but if we're ever having sweets in our house, I feel like I need to distribute them evenly among everyone according to colour & size so everyone gets a fair pick! Just goes to show you how much an effect the idea of being conscientious has on my life! If nothing else, it was really interesting to take away this thought process from the whole experience.

So why did I write this?

Well for one thing, it's very therapeutic to type out my experience & feelings. Two; it really helps to keep a log of everything - like I said, brain fog & memory problems! Thirdly, I really hope that anyone reading this will have one of two responses - either you're in the same situation & feel less alone or you previously knew nothing about CFS/ME but now you have a little insight into what it's like. I know it was incredibly comforting to discover other bloggers who're going through the same thing, to be able to relate to someone at last! I also know that before any of this happened, I knew very little about the illness and so any kind of awareness is beneficial.

Tips for seeing a specialist:

- Chill out and don't worry, you'll be fine! Easier said than done I know but it'll be grand!

- Write and bring a list of your symptoms!

- Wear comfy clothes & shoes - you might be waiting a while!

In short, I still don't have my diagnosis but at this stage, it's very likely to be Chronic Fatigue Syndrome. I hope you've been able to engage with this post & perhaps learn a little more about something new! I'm quite apprehensive about posting this but I know you're all a lovely bunch!

Have you ever heard of ME/CFS?

Thanks for reading,