M.E and Me

I’m having a bad pain day. I had a really bad sleep so my tolerance to pain is low, but I’m having a lot of pain today.  Years ago, I damaged my right knee when my eating disorder was active, I was working out at home too much and not warming my joints up and was diagnosed with pes anserine bursitis of the knee. It was pretty painful, I spent two weeks slowly shuffling at work until my manager finally got me to see my GP. There’s nothing they can do for it, but I had to rest it at home for a week. Since then, every now and again, that knee hurts for no obvious reason.  For the last few weeks both of my knees have been stiff and sore, but today they’re very painful. I think the cold, damp weather that we’re having here in Scotland has brought it on. I have tried using arnica gel and CBD balm on them with not much relief, so I will be trying my TENS next (I’ll talk more about my TENS in another post soon).  With my M.E. I’m in pain everyday, my legs generally...

Today isn’t a good day I haven’t been well all day, I’m fatigued physically, my body feels heavy and clunky. The last time I left the house was Saturday and I needed to get a few presents so we decided to go to Asda. As soon as I got up I felt dizzy, kind of like that horrible spinning feeling you get after drinking too much and you collapse onto your bed and whoosh goes the room.  My movements are slow, it takes extra energy to will  my arms and legs to move. I have been on the verge of sensory overload all day too, just teetering on the edge, ready to fall into that dark hole of anxiety and pain.  I’m struggling to even write this, the dizziness and brain fog is very intense. Let’s hope tomorrow is a better day! Thanks for reading.  That ME Girl

How do you exercise with a chronic illness? I have been wondering for a while how you exercise with a chronic illness like ME.  My body has severely weakened since developing ME and it is a worry, as is being unable to get any exercise, which as we all know is good for you.  How do you do it when just climbing five or six stairs can render you breathless and ready to collapse?  I monitor my heart rate with a fitness watch.  I came across some information at the start of the year about watching your heart rate and keeping it below the anaerobic threshold to try and avoid going into PEM (post exertional malaise).  Denys bought me a watch for my birthday and I have been using it ever since to help with pacing.  If I feel like I’m doing to much, or that my heart is having to work harder, I check my heart rate and rest accordingly.  I try to keep it below 100 bpm, my average seems to be within the 70’s, or sometimes the 80’s.  If my heart rate i...

What is PEM? PEM stands for post exertional malaise.  This is a definitive characteristic of ME/CFS. So what is it? Well, it’s different for everyone, but it is usually a period of worsening of symptoms, and what I call “payback” for doing something. That something could be a physical thing, such as going for a walk, going to the gym, having a shower or even just climbing the stairs. It can also be a mental thing, like stress, or from socialising where you have to be ‘on’ for a period of time. Like what I’ve just had with having a visitor staying for a few days; I didn’t do anything physical, but I am completely worn out mentally, and this has caused me to have PEM. It also ‘typically’ (not for everyone) comes on 24-48 hours after doing said ‘thing’.  Today I woke up with a pretty intense headache, along with the feeling of nausea, my body feels weak, and I have been on the verge of sensory overload all day. This is because I had to engage in conversations prett...

I’m tired... Today I met up with some fellow ME’ers for lunch. There is a Facebook group for my local area for anyone affected by ME. I attended a lunch date once before months ago, but I haven’t been able to go again until today.  I was pretty nervous walking into the restaurant as I didn’t know any of the members who would be there, so Denys walked in with me and got me to the group. I’m not as shy as I used to be, but it’s a bit intimidating being one person sitting there compared to most of them being a couple, but I think I did ok.  I realised that I’m lucky, yes I have pain everyday, sometimes I need to use a walking stick and I can’t work, but I sat next to a lady who is mostly wheelchair bound and can hardly eat due to stomach issues, and I heard about a lady who has been unwell with ME since she was a child. My heart aches for them, I know I am fortunate that I can move around my house most days, I can eat and socialise in small bites.  I lik...

My sleep is awful... My sleep has been terrible since I developed ME. I always needed a lot of sleep, but now it doesn’t matter how much I get, I still feel like crap! Over the last year I have fallen into a bad habit of not being able to sleep before 1am, and then I don’t wake up until midday. I have been on several sleeping aids and they all work for a while, until eventually I have to swap again. And I have done just this; I’m back on a tablet called Melatonin. Here in the UK it’s only available on prescription, not like America where it’s classed as a supplement.  I was asleep by about midnight last night which is great! Hopefully the same will happen today.  We have a friend staying with us for a few days and he also has ME. I hate that other people have this horrible illness, but it’s kind of nice chatting with someone who ‘gets it’, you know. It’s times like this when I’m more likely to get sensory overload, having to ‘be on’ wears me out, but I do like ...

What is sensory overload? Sensory overload is a symptom I have fairly often, and I believe it is quite common amongst those with ME.  The first time I had it, I thought I was having some sort of anxiety or panic attack. I was mid conversation with my boyfriend’s mum, she was talking to me about something and then it felt like this big cloud of fog came down in my mind and body; I couldn’t concentrate on her words, they went in one ear and literally come out the other without registering, I felt my heart begin to flutter and all I could do is look at her blankly while I was trying to figure out what was happening to me. I managed to quickly excuse myself and went to the bathroom, I sat in there for a few minutes trying to get my heart to slow down and for my brain to start functioning again. I’ve had panic attacks in the past, if felt similar to what I had experienced before, but not quite. It was different somehow.  I couldn’t remember what Denys’s mum...

So, going back to the migraine... I saw my GP a number of times about my migraine, I also saw an optician several times to make sure it wasn’t being caused by my eyes, but all was fine; no changes to my prescription, eye health was great. So what was wrong with me?  They tried me on a few different medications for it, initially I tried one of the triptan meds which are usually the first point of call with migraines, but they soon took me off them because they clashed with another medication I take. I tried beta blockers and two anti-epileptic drugs; the first called Carbamazapine, the second Topiramate. Neither one of them worked, and in fact, Topiramate made me feel worse - it was causing a feeling of pressure behind my eyes and I was having bright flashing light auras, which wasn’t typical for me. We soon found out that it can cause glaucoma and retina detachment, so I soon came off of it.  I was popping a lot of co-codamol to keep on top of the pain while we...

Hey there, welcome to my blog. My name is Sian, I’m 28, I live in Scotland and I have a chronic illness called M.E.  What is M.E.? M.E stands for myalgic encephalomyelitis. It is also known as chronic fatigue syndrome (CFS).  How long have I had ME?  I developed M.E 2 years ago at the start of September. I was about to start college to study beauty therapy and the day before I had a headache. Ok, no big deal, everyone has headaches. By the evening it had developed into a migraine (you know, when you can’t stand the light, or sounds, and you feel like you’re going to throw up). I didn’t think too much of it and hoped it would be gone by the morning. Well, it didn’t go. In fact, I had that same migraine constantly for 6 months straight.  What did you do?  I got on with it. I started college the next day, and I attended every day I was supposed to until I couldn’t handle it anymore, which was Christmas 2016.  What ...