Is it ME or is it me?

Sorry its been a couple of days since I last blogged but I have been pretty down in the dumps 😦 I seem to be struggling with the fact I have ME/CFS because some days I feel like I am literally moments away from having a stroke, this weird eye feeling and strange head symptoms really do get me panicking and when I lose sight of the facts I start to become very anxious and this doesnt help with this illness. The anxiousness then makes me think is it ALL just in my head and I have some ‘mental’ problem, but then my councillor tells me this isn’t the case.

I have had a lot of stresses lately, my daughter dislocated her elbow at the beginning of the week so that meant an unplanned tea time rush to A&E the fact that she is only 2 years old meant we had a couple of sleepless nights too, I felt guilty for thinking “I could do without this” and this has also added to the stress. The weather has taken a turn for the worse too and this always seems to give me the blues ( I know ! I’m a real bundle of joy haha ).

I promise to try and blog something more positive and happier next time 🙂

Thanks for taking the time to read my blog x

Its fun to be beside the seaside..

Yesterday I decided to take my better half and our daughter to Saltburn for an ice-cream. The normal John would of went for a stroll along the beach maybe ran in the sea and made sandcastles, the new John sat and had an ice-cream. I’m not beating myself up over it though I have seen this a positive experience because I know that it is improvement, the idea to go for an ice-cream was mine and I did feel good for it.

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Today we have enjoyed he sun in the garden and we managed to have a little walk up our local high street and take our little chihuahua along with us, it was nice 🙂

Memory problems, Sleep restlessness and Rituximab.

So I wore my fitbit for bed last night and set the app to record my sleep, I was amazed this morning to see the results, according to the little chart thingy I was restless most of the night and I actually awoken in the middle of the night. Now I know that its a common symptom of ME/CFS but this actually shows you every time your restless during your sleep and kind of makes you realise why you wake feeling like you haven’t been to sleep. It will be interesting to see when it says I’ve had a better nights sleep whether or not my symptoms are less.

Today has been a brain fog day and I have started researching ways in how to help with this annoying symptom, I will obviously share my findings here ! My partner commented on how bad my memory has become, this is a concern as I have also noticed this but its always a worry when somebody else points it out to you. She says its probably because I am constantly stressed out, it worries me that permanent damage is being done and we all know that worry is not good for us guys.

There was some positive findings for ME/CFS sufferers yesterday regarding a trial currently going on using Rituximab ( A cancer fighting drug ) it showed that 64% of the patients used had significant improvements from there illness. This is only the early stages but is certainly a step in the right direction. The link to the article is http://www.meassociation.org.uk/2015/07/comments-further-evidence-of-rituximabs-effectiveness-in-treating-mecfs-plosone-publish-results-of-phase-2-trial-1-july-2015/

Hottest day of the year, symptoms and tech.

Wow what a scorcher ! Well for us in the UK anyhow, the garden thermometer peaked at 37.5 C hotter than Florida 😮

Now here comes the moan 😉 , for us ME sufferers we cant seem to tolerate extreme temperatures, so this means today has been a real struggle and there is no way of escaping the heat, I always loved the sun, a real sun-worshipper, but at the moment I have a love/hate relationship with it. Sunny days make you feel happier but the heat really drains me so I’ll be the one sat in the shade thanks !

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I have read on a couple of ME CFS blogs that people use a fitbit flex to track there daily activity levels so I have decided to purchase one of these. It tracks things like how many steps you have taken, sleep pattern and calories burnt. Then it seamlessly transmits the data to your smart phone for you to analyse. Watch this space for a more in-depth review after I have worn it for a while.