The Beginning of the Journey….

I have suffered with immune system problems since I was a baby, I probably had an immunoglobulin problem all my life without ever realizing it and when I contracted ME after a bout of Shingles in November 2007, my immune system literally died on me and left me as vulnerable as someone with HIV/AIDS.

Since I got sick in November 07, I have had 20 outbreaks of Shingles.

I went from healthy to severely ill in a matter of months; there was no steady decrease in health for me. One day I was well, the next I wasn’t and I never recovered and ended up getting worse and worse until I was so poorly I thought I was going to die. I had worked in marketing for two years, running campaigns for all the top West End London shows and after two years, I thought my CV was good enough to apply for my dream job: working for Reading and Leeds Festivals. I was about to apply internally as the manager was one of our clients, when I collapsed with a fever and never made it back to London, my dad scooped me up and took me home to Sussex.

After being ill for about a year I noticed certain things that I hadn’t noticed before, for instance my heart was beating erratically and too fast, I was having seizures all the time, I stopped being able to walk properly and was having fainting spells.

I spent weeks on end lying in bed with a fever, drenched in sweat with a flu like illness that never stopped, it attacked my body with such force I never stood a chance.

My long thick beautiful red hair which was my pride and joy, my trademark all fell out. My skin blistered and scarred from all the shingles outbreaks.

I got infection after infection. The shingles kept recurring every few months. I left the house wrapped up in a woolly hat and coat on rare occasions when I needed medication or to see the doctor, or just to get some air in my lungs in the garden and I picked up a bug and spent days vomiting or in need of antibiotics.

I picked up these infections weekly, so after a good year of having M.E I became resistant to the frontline antibiotics, Amoxicillin, Augmentin etc and the doctors despaired of me.

My GP at the time was fantastic, he fully understood M.E but he mentioned mental health one day (he said it was to help me get a home visit for my medical as the DWP do home visits more for the mentally ill than the physically) but I got on my high horse and left the surgery, feeling like I had been betrayed – that my GP had gone over to the dark side. It was probably the worst decision I had ever made.

The next GP was seen straight away as I was having severe stomach pains and sickness, something I had never suffered with before. I was told it was Irritable Bowel Syndrome, caused by my constant ‘belief’ that I am ill. I was also called manipulative cunning because as he wouldn’t listen, I went to see a female doctor at that practice who I cautiously asked if it might be my thyroid making me feel so ill. She refused to refer me to anyone except the local M.E service and I despaired – where can I go now?

By this point my infections were getting worse and worse, the glands under my armpits were like golf-balls, my throat was so swollen I looked like I had a double chin and I was having massive mobility issues. My ankles kept going over and I kept spraining them, my arms and kneecaps kept coming out of their sockets and my neck felt like someone was stabbing it with burning wire, I was in increasing amounts of pain and would cry myself to sleep at night.

My appointment came with the ME clinic and the doctor said “good news, it’s not ALL in your head”. He examined me and said the lumps under my arms were nothing to worry about.

He said a bit of cognitive therapy and some exercise and I’d be right as rain. I was told a physiotherapist would be in touch. Great, I thought, perhaps some physio might help? She called the week later and told me she didn’t actually do physio on the ME clinic patients. She spent an hour asking me what my thoughts towards this illness were and what I understood ME to be. I said I don’t know but it’s obviously something that is attacking my immune system. I was told this wasn’t possible.

I asked her why I was fainting all the time and why I was having seizures and was told this wasn’t normal and that the clinic couldn’t help me as I was ‘too complicated’ and received a discharge letter based on two 40 minute phone-calls.

Things were going from bad to worse and I could not get out of bed. I was fitting and seizures were getting more frequent, getting weaker and weaker and more and more infections. I could not come into contact with anyone. I had contracted swine flu which left me bed-bound for two months one time I saw a friend. I had to cut myself off from people for the sake of my health.

In desperation I joined an internet forum and one member recommended Dr Andy Wright, who is now being hauled up in front of the General Medical Council. Andy Wright introduced me to the pathological world of ME and the great myths behind my immunity. His protocols and treatments weren’t perfect, he did get a few things wrong but I will be forever grateful for what he got right.

I sent off my blood tests for the ATP Profile and was told that the results were the worst he has ever seen. My mitochondria were diseased, my cells were producing no energy and I was riddled with bugs, free cell DNA and free radicals. I was also severely B3 deficient – which I will get back to later on. Wright said that I had a form of mitochondrial disease. Later on I discovered it was a virus that was affecting the mitochondria but more on that later. I was also told my body wasn’t producing cortisol and was recommended I take DHEA.

He recommended some supplements – Magnesium Malate, DHEA, Vitamin C, Vitamin E and L-Cartnine. None of it helped.

I persevered for around 8 months and saw no improvement whatsoever. The pain was getting worse, I was seeing my osteopath twice a week who shook his head and look at me sadly as he said all my joints were in the wrong position, the cartilage between my ribs was so swollen it was pushing against my diaphragm which is why I was struggling to breathe, the muscles supporting the head to the neck were like goo and wasting away.

Things continued to get worse, my shoulders kept dislocating, my ankles sprained and the pain when I walked was atrocious. It became dependent on a wheelchair when going anywhere as I lost the ability to walk and was so weak from the dizzy spells I couldn’t function anyway.

My osteopath recommended I see Professor Graham and to cut a long story short, I was diagnosed with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. Not irritable bowel. Not depression. Not laziness or a lack of exercise, a real registered disability.

I was referred to my local physio service who turned out to be useless. All they offered me was a treadmill in a tatty room full of people coughing. I picked up an infection on my first day and my heart was beating so fast I said I couldn’t possibly consider cardio workouts. They looked at me like I was a hypochondriac and I was so ill I never made it back for another session anyway.

Good job I used my common sense as MP Brynmor John who had ME died after using a treadmill.

By this point I had had enough. I was getting no help from anyone and was at my lowest point. I can see why people feel like they have no way out and nothing to live for as the services in this country give us nothing.

So I decided to treat myself and four years later I am starting my own organization in the hope I can help other patients who, like me, had nowhere to turn to.

I never lost hope that I would recover, I refused to believe that there was nothing out there that could tell me what was wrong with me and help me get better.

Four years on and I am still travelling down the diagnostic path – I still have a long way to go but I am getting there. I realize that I am too sick to probably make a full recovery but the fact that I can now manage things due to certain treatments means I can still continue to have hope.

I am sharing my story in the hope that other people gain some benefit from it.

Coming up in Part Two: Diagnosis and Decisions

 

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4 Comments (+add yours?)

  1. Barbara Turner
    Nov 05, 2011 @ 16:15:16

    With you all the way Gabbi (had the blasted thing for 40 years). Also the Andy Wright situation is a trevesty as here in the North where I live he is the only one to try help us folk. I was lucky I could work (a bit) when younger but my heart goes out the the people who cannot work, and have much hassle trying to get the benefits they deserve, especially when I see programmes on TV like the one recently on “benefits cheats” . Good luck!

    Reply

  2. Sarah Lawry
    Nov 05, 2011 @ 20:02:03

    Thank you for writing about your experiences Gabi, they will sound familiar to many with ME and other neuroimmune conditions. I presume you know that Ehlers Danlos Syndrome is much more common in folk with ME – similarly we are far more likely to fall prey to MS. I applaud you for starting your blog and continuing to bring our plight to the attention of the wider public.

    When I heard about the sudden death of Brynmor John in the mid-90s, I thought it would be a game changer for policy makers. As I wrote to my MP last month:

    “From: http://www.meactionuk.org.uk/Background_Information_re_CBT.htm
    “On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28-30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

    I thought that this might be a game changer for folk with ME when I heard about it whilst fighting to breathe and stay alive in around 1995. There have been so many such occasions, but it never happens. Last one of note was Dr Jill Belch (Dundee Uni) after publishing her study on children with ME. As I wrote in an email to an MSP on the Cross Party Group for ME a week or so ago:

    I cannot bear to hear another scientist, such as Dr Jill Belch, state so clearly at the end of a TV interview that hopefully… finally… folk with ME will be acknowledged as suffering from a severely debilitating neurological condition – knowing that in actuality, no such change will occur without close ministerial attention. WHO classifies ME as a neuro condition but NICE guidelines etc promote only psychological based interventions which, as stated previously, are dangerous, inappropriate etc and leave the sufferer in the medical wilderness – alone, untreated and possibly posing a health threat to those sharing their environment. It is terrifying and inhumane.”

    Reply

  3. Craig Robinson
    Nov 06, 2011 @ 19:42:30

    Thanks for sharing.

    Reply

  4. Linda Wigman
    Nov 06, 2011 @ 20:55:38

    Thank you SO much Gabi for your blog. You have been to hell and back, and yet you come across as so strong, but i think us MEers have to! I can’t wait to read the next instalment. Love and hugs.x

    Reply

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