Its been a while…

How is everybody ? Its been a while since updating this blog, mainly because I just haven’t had the energy to do it, but today is one of them days that I feel like i can put pen to paper ( fingers to keyboard 😉 ).

So where have I been ? Not very far in terms of distance but leaps and bounds in terms of journey ! I had my first couple of appointments at the ME specialists James Cook University Hospital and I am now officially part of the group. To be honest these ‘specialist’ appointments are merely an education on this illness and support groups are put in place, GET, CBT and group therapy, I haven’t actually been to any of these as there is hoops to jump through, waiting lists to endure and referrals to seek, good old NHS eh ?

I am managing to get out of the house a lot more and have managed minimal shopping trips, visits to appointments and no longer feel the need to stay in the car whilst my partner endures the grocery shopping ( most times )

I also went to my local ME/CFS meeting hosted by ME North East, it was nice to meet people with the same illness and it helped to discuss my symptoms which in turn helped me to almost accept this. Unfortunately, it was a very negative group as all the people there had suffered for such a long time and they where sick to death of hearing stories of hope etc. This knocked my confidence a little but my partner helped restore it when she said “the ones that have beaten this would obviously be a million miles away from this ‘get together'”

What have I done ? I have tried a lot of things and I am still trying new things all the time, I have used multi-vitamins, fish oils, better diet, meditation, prayer, acceptance, counselling, sleep, mindfulness, napping, pacing, avoiding stress and others, of which I cannot remember, I can honestly say that nothing has helped I’m afraid. I am beginning to believe that this illness is only going to go away when its ready or when there is a cure found, but this is not stopping me from trying new things and looking for my/our cure ! In fact I am booked in for my first Reiki session tomorrow so I will be sure to let you know how that goes.

How do I feel ? This question is REALLY hard to answer, the first answer that comes to mind is depressed, but not the depressed where I need some tablets, its almost like I am really down today but I know that it will pass so I try to not let it get to unbearable. Yesterday I had a really good day, it almost felt like I was better and I even started to imagine getting back to my old life, but as this illness often does, I was kicked straight back down to Earth this morning.

My symptoms at the moment are mainly dizziness, blurry vision and low mood, I still have IBS and my legs always ache to differing levels. My sleep patterns are a little better and I don’t lay in bed until dinner time any more.

Anyhow thanks for reading and I promise to get back to being a regular blogger, pinky promise !

Love Jon x

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.

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

An Introduction..

Well this is my first post and I thought it might be best to introduce myself.

My name is John Mitchell and I come from the UK I am currently 34 years old, I have just been diagnosed with ME ( Myalgic Encephalomyelitis ) or CFS ( Chronic Fatigue Syndrome ).

I am constantly learning about this illness and I plan to share my views/thoughts and findings on this blog.

How it all started.


6 months ago I contracted a ‘flu type’ virus, this was like nothing I have ever had before. It started with me waking in the middle of the night with a strange panic type feeling and really bad dizziness and nausea, I would wake sweating jump out of bed and crash into the bathroom where I would try to vomit, I never did.

Then came the aching stomach, migraines, aching legs, light intolerance, tinnitus, blurred vision, weakness and cold sweats.

Naturally after a couple of days I phoned my local Dr. who agreed to see me, she gave me a check over and asked me to hop on the scales, I had lost 21 pounds ( 1.5 stone ) in the space of 10 days ! She decided to send me for an emergency endoscopy and spoke about the possibility of stomach cancer, this sent me into a anxious mess. See the thing is I was 33 years old, going to the gym 5 days a week, fit and very active I ate like a horse and in no time I had become this weak, frail man who felt about 90.

What seemed like the longest 2 weeks passed and I was finally laid on the hospital bed getting what felt like a hose pipe shoved down my neck, the endoscopy. This experience is something I never want to undergo EVER again, it was horrendous! The Dr. finished and I looked to him for an answer, he didn’t have one. He told me that there was nothing wrong with my stomach and that he had taken a biopsy to rule out infection, this eventually also came back negative. A relief that I didn’t have cancer but I still needed to know what was making me feel so ill, I literally thought I was dying and my sanity at this time was very questionable. I would constantly cry and felt like such a burden to my partner and our kids.

I went back to the Dr, several blood, urine and stool tests where taken over the course of the following months but one by one I was told that there was nothing to report, this was extremely frustrating and words like hypochondria and health anxiety where being used.

I knew that there was something wrong and in a desperate plea for help I succumbed to the Dr’s recommendation of anti-depressants, Prozac to be precise. I was told that depression and anxiety was making me have all these symptoms and after everything I had been through I was willing to try ANYTHING and who was I to argue with a Dr!

I started to accept that I must be anxious on a sub-concious level and I even enrolled into ‘The Charles Lyndon Project’ to try to rid me of this illness. I must add it did help to a certain degree but I was still not getting better.

I self researched and eventually came across ME/CFS and discussed this with my Dr, she agreed that my symptoms where more like ME and has now referred me to the ME specialist in my area.

I am still taking the anti-depressants but I am due to speak to the Dr about coming off them safely.

My Symptoms ( Up to now ! )

  • Brain fog – This is like when you first wake up and your not quite awake and your concentration is terrible and your clumsy, but it lasts all day and is quite debilitating.
  • Aching Legs – I feel like I have ran a marathon in my sleep not only do they ache but they wobble and shake, especially when I am coming down the stairs.
  • Fatigue – Not like a ‘normal’ tiredness this is like when you have been on a really really long drive and your brain starts to switch off so you have to pull over and rest, again this fatigue lasts for most of the day, I’ve found that napping can help, I express ‘can’.
  • Vision Problems – I have a visual snow going on, like when you don’t tune a TV in, some days its worse than others but its always there. I also have this strange pressure feeling in my right eye, it feels like someone is pushing the side of my eyeball, very strange and hard to ignore.
  • Shaking/internal tremors – Its like adrenalin is flowing through my body and it makes you feel almost panicky. Also my hands shake all the time.
  • Nausea – Almost like I have eaten something that doesn’t agree with me.
  • IBS – Aching right side, it feels like a dull toothache type pain and fluctuates in severity, I find that going to the toilet can relieve this sometimes.
  • Headaches/Migraines – These are not constant thankfully but they can be really intense and going to bed in a dark room is the only option for me.
  • Anxiety/Depression – This is expected and coping with not being yourself is the hardest symptom of all in my opinion, I am a father, a partner, a carer, a son, a grandson, a friend, a brother and an uncle and with all this comes responsibility. Not being able to do what I love, helping my family and friends, has been a real struggle for me, I was always the one people could come to for help and now I have to say no to these people, trust me when I say this has been the hardest symptom to live with!

There is more symptoms, many more and as I update this blog I will include them but as I am typing the keys are becoming blurred and the fatigue is kicking in. I hope you have enjoyed reading my first post and by all means please leave a comment.

Love John x