Friday, 9 October 2015

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

Saturday, 27 June 2015

Its the weekend !

What a scorcher ! Well in the UK anyway, it must of hit the heady heights of 21 C here in the North East, which trust me is high for this region. Today has mostly been spent in the garden enjoying this blistering heat but I did manage to take the tribe out to get an ice-cream from Redcar sea front, blueberry chewing gum flavour it was an experience, the kids loved them and our youngest managed to get it everywhere she looked like she had been bathing in the stuff ! I think I would of enjoyed a lemon-top more but you gotta try these new things now and again.
The ME/CFS has been reduced to tiredness/dizziness and nausea these last couple of days, although not great it has been a little better and manageble. My partner is still doing everything and I am still feeling like I should be doing more but she understands ( luckily ) and I honestly dont know what I would do without her !
I read an interesting article on the ME Association Facebook page about Emily Sheffield, younger sister of Samantha Cameron, whom claims she had ME for a year and managed to 'heal' herself by taking a dip in freezing cold waters of the coast of County Galway. I would like to know how she even had the energy to go into the sea and how she managed to get back out. I personally think that this was a load of rubbish and yet again doesnt help in the fight for recognition toward this horrible illness. Here is a link to said article please have a read and let me know what you think !

Thursday, 25 June 2015

A better day.

So yesterday was pretty bad, I am sure you know if you read my previous post, but today has been a little better. The brain fog has been minimal and if you know me you will know that this is one of, if not the worst symptom for me, I have however felt quite tired and had to resort to a nap midday, but this is OK as my partner kept the little one entertained while I went back to bed ( for half an hour ). Doing this helps me to re-energise my batteries and although isn't a cure, it certainly helps !
The weather was nice today too so the day has been spent sat in the garden enjoying some natural vitamin D and as you may be aware this is recommended for CFS & ME sufferers, plus we get a tan ha ;).
My legs have ached today which is was an unpleasant return as they haven't hurt since my little accident last week which had me ending up in A&E, You see I tried to jump over the garden fence, foolish I know, but it was on one of my 'better' days. Anyhow, the garden fence is spiked and as I was stood on top of it I slipped, the spike went into the back of my leg and there was a hole, blood, blue lights and stitches. I have pictures but they may be a bit graphic for this blog. As you can imagine it was very painful but strangely enough all I cared about was if it was going to agitate my ME!

All in all a good day today here hopes for more of the same tomorrow.

Wednesday, 24 June 2015

Drunk without the drink !

Yesterday and today have been pretty miserable a continuation of deterioration, it started with what I can only describe as a woozy feeling, making me feel drunk but without the drink ( and not fun! ). Today I am feeling really worn out and pretty upset with it all, I feel like I am having a crash. A crash is the term used by ME sufferers and basically means that we are having a relapse. Hopefully tomorrow will bring a better day and I can get back to being positive. 
Some good news, I found out today that there is a local ME support group meeting in my local area next month, I am going to it ( providing I don't have to rest! )

Monday, 22 June 2015

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