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

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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/

Sunday Sun !

Firstly, I cant believe I have had over 100 views, 2 likes and a comment on my very first post that’s fantastic thank you !

Today has been a very hot day and has mostly been spent sat in the garden while the better half runs round after me and the kids ( bless her ! ). She made an amazing beef dinner which always makes me feel that bit better 🙂

Today’s symptoms have mostly been blurry vision and the usual right eye pain/pressure, its quite hard to explain but it feels like something is pushing against the inside of my eye and its one of them symptoms that really gets me down as its quite hard to ignore.

The sun always makes me feel a little better, maybe its that free vitamin D, but it also reminds me of how immobile I actually am and its heart breaking to watch people walking by enjoying life and I cant even walk as far as my garden. The summer is here to enjoy and when you have kids this is the time of year in which you go on adventures, unfortunately this has been robbed from me BUT I am determined to get back to my old self eventually and refuse to believe that this condition is me for the rest of my life.

Although today’s post seems a little negative I can promise I have had numerous positives today, my daughter playing, my wife-to-be telling me she loves me, the kids laughter and the wonderful weather are all but just a few and I am extremely thankful for these.

thanks for reading x