Few Against Many – The Battle for Rehabilitation

How does disability affect us? How far can we go before we admit defeat? How do we learn to accept our limitations?

These are just a few of many questions I get asked on a daily basis. How to deal with the transition from being completely healthy to completely disabled, and if I am honest, I don’t really have the answer as it’s something I am dealing with myself.

I read somewhere that over 60% of disabilities happen later in adult life, that they are acquired as a pose to born disabled.

This isn’t a ranty piece or an “I’m feeling sorry for myself” piece. It’s a question of perceived disability – and how much is too much, how far is too far?

My rheumatologist said to me that once you put yourself in a wheelchair, you’ll never get out of it. I am battling between what I want and what I need.

As I write this I am feeling very frustrated. Not for me, for the needless suffering of millions out there like me who live like this day in, day out, in isolation, with no help or support. I saw a couple of people at the CFS clinic yesterday at the Royal Free Hospital, pale and shaking. I knew they would go away feeling hopeless and even more scared – most do. This feeling is exactly the reason why I founded Neuroimmune Alliance, so people didn’t have to be scared anymore, that they could understand their symptoms and why they are sick, get the appropriate tests and find other people to help and support them. Our network extends across the UK, South Africa, North America and Canada – we help and support people all across the Globe. It has taken me seven years to be diagnosed with a potentially fatal immune system disease – that was overlooked and scoffed at because I had a diagnosis of M.E/CFS – otherwise known as Chronic Fatigue Syndrome. I now have this diagnosis taken off my medical records but those who study the disease understand that my type of immune disease is primarily what CFS is – the name is merely a red herring.  I also suffer from a serious liver condition called Primary Sclerosing Cholangitis. Again, it’s taken me years to get taken seriously. I was laughed at by consultants when I said I was ill, I nearly died in hospital of a post-operative infection and still the consultant scoffed “it’s only your ME making you like this” as I writhed around in pain and in and out of consciousness.

How are we supposed to deal with our disability AND being treated like this by the system?

I know of one very brave young lady who was having such bad seizures whilst in hospital, the nurse left her lying on the floor in her own urine, telling her she could get up if she wanted to and must stop this behaviour at once. When I found out I was aghast and urged her to make a complaint against the hospital.

So how do I cope? What’s my secret? People ask me all the time how I keep going?

I can no longer function like a normal human being. There, I said it, round of applause please. I haven’t for sometime but I manage. Each trip I take, something happens and I end up in hospital. My legs just do not want to work, no matter how much massage or stretching I have, the EDS has wrecked my joints to the point that each bit of the leg doesn’t work in harmony with the other, my ankles do not want to move when I persist in putting each foot forward and I waddle like a duck before one part of the leg collapses in desperation – but I stubbornly persist, putting each foot forward, desperately looking around for handles or ledges nearby in case I fall over. Then there is the searing pain with each tiny step I take.

Lest we forget about the POTS. POTS is a funny one – sometimes it isn’t there (usually in doctors examinations) and I think “oh wonderful” and go about my day and then it hits like a tsunami, taking over my body and I can’t even think. If I’m not careful, I’ll black out altogether. Syncope the doctors wrote on my notes. My blood pressure plummets so low I don’t even feel like I am in my body, I feel like I am floating elsewhere, in another world and on another plane. Then there are the seizures – which tear my body apart, I feel like my soul is being ripped away, like Lord Voldemort after he tried to kill Harry Potter.

It honestly feels like someone has turned a switch on in my nervous system. I have giant surges of adrenaline, seizures, insomnia, blackouts. Then there is the worry that I have a tumour on my pituitary gland – but that’s another story for another day.

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Walking, or being upright for too long causes all the above symptoms. If I do not take adequate rest breaks or push myself too hard I will have a seizure. I live in a world where I have to have a bed to hand, peace and quiet and no stress but in reality that is hard to achieve. People say “well sitting up for a minute won’t hurt you” or “just try getting some exercise or fresh air” really haven’t got a clue. I’ve learned to live with my limitations  – it’s just something that I need to do, like taking insulin every-day or having to fit a prosthetic limb, it’s something I have to do but it doesn’t define me.

Otherwise the only way I cope is with the support network I’ve created online – people across the Globe suffering the same as I am. And I fight, I refuse to give into this and let it dominate my life.

In all honesty, I’ve given up on Western medicine and its ability to make me better. Nothing can stop these roaring infections I have in my bile ducts. I am resistant to many mainstream antibiotics and end up with severe cholangitis and pancreatitis. It could kill me, I am well aware. I have started taking a potent blend of Oregano Oil as it has antibacterial properties, even against MRSA or so I have read. No doctor seems to want to cure these chronic infections – my new liver doctor may come up trumps but I am not holding out any hope. Once the biliary system is damaged, it’s irreversible bar a transplant.

I have a lady from Beijing trained in Chinese herbal medicine, sports injury massage and acupuncture who has helped me more in two months than anyone has. She uses a substance called “Dragon’s Blood” from Beijing which is a potent blend of herbs that ease joint pain, and it really does work! I am starting to wonder if I would benefit from going to the Far East. Certainly these sorts of therapies are more readily available in Africa where I spend a lot of time, but most definitely NOT on the NHS.

As Incubus said “if you really want to live, why not try, and make yourself”. In other words, if you want help, you have to do it yourself as no one is going to do it for you.

I’ve been toying with the idea of a wheelchair for a long time now. Some see a wheelchair as a tool to independence – a means of getting out and about again. To me it signifies admitting defeat, that once I am in that chair I am never going to get out again. I want to walk, smell the ocean, stand on two legs and feel like a human being again. Maybe I am thinking wrong. My last ditch attempt is Tai Chi. It’s supposed to be good for the joints and good for the soul. You never know, it might just work. I will be blogging about my experience with that for anyone who is interested.

All these symptoms are just too much for the poorly trained CBT therapists to understand. We are told in NHS sessions that we focus too much on our symptoms and that we must think about the fact that our symptoms are being caused by anything OTHER than ILLNESS.

A recent study stated “Precipitating factors may include acute infective illness and/or excessive stress, while the illness is maintained by the interaction of behaviour, thoughts, emotions and physiology. For example, after a severe infection or other illness, attempts to get back to normal life may result in bursts of activity punctuated by the need to rest up to recover, known as all-or-nothing behaviour (Moss-Morris 2010Spence 2005). These periodic bursts of activity may exacerbate symptoms and result in failure, which further reinforces sufferers’ belief that they have a serious, ongoing illness.” (http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full)

I am sure these authors have never read Montoya’s work on persistent HHV6 infection then. People are seriously, actually dying and they publish this drivel. Since I began working with M.E patients in 2009, I can count over fifteen deaths. One is too many yet they go unaccounted for by the NHS.

If we don’t get better, the patients are blamed for it (testimony from a patient at BARTS). Have you heard anything like it! If it’s not illness making me pass out then…oh nevermind, I’m not even going to argue. Anthony Komaroff said at the recent Stanford Conference…. “the illness is not simply the expression of somatic symptoms by people with a primary psychological disorder. It was a fair question thirty years ago to ask whether people with these symptoms might not just be expressing psychiatric stress, amplifying normal body sensations, or even fabricating for secondary gain—was a fair question thirty years ago, but today it’s no longer a fair question.”

So it seems like its one girl vs the system. Sort of like Buffy the Vampire Slayer, only with crutches.

The actual charities who are supposed to represent us are doing absolutely nothing bar Invest in ME and I suppose I have to give kudos to the ME Association for flying Ian Lipkin over. Other than that its grass roots organisations like mine, the MEANI folk (ME Association Northern Ireland) and various underground bloggers and writers supporting patients.

Our clinic is experiencing every single hurdle you can imagine. 1. I can’t get any doctors interested in M.E and 2. What an earth do they need a clinic for when they are not actually sick. I had a great relationship with a local nutritionist and GP who had an interest in M.E. It was him who found my immune deficiency back in 2007. If anyone could take up Rich van Konynenburg’s work in Sussex – it was him but sadly he declined my offer and stated he believed in the psychosocial model of M.E which saddened me greatly, he wouldn’t even come to the Invest in ME Conference. If doctors aren’t willing to LEARN, how can they expect US to cope?

I am not sure how to find a new doctor. I will. I won’t blog my plans for all to see as it might lead to false hope and we’ve had enough of that now haven’t we (XMRV anyone!).

My ambition is to get proper immune system testing and virology done on every patient – and have every patient diagnosed PROPERLY – not people with hangovers, burn out, post natal depression being diagnosed with a serious neuroimmune disorder. I have meetings in place but whether they will come to any good, who knows. I will be struggling, fainting, sick and weak but I WILL get my point across and make some change.

Those who wish to hear the full Anthony Komaroff Stanford presentation can do so here: https://www.youtube.com/watch?v=nyyjRdbvPj0

For more information on my work please follow me on Twitter @ActionNowGal and see my website http://www.neuroimmunealliance.org

Thank you for reading.  



1 Comment (+add yours?)

  1. Tanya Marlow
    Apr 05, 2014 @ 15:06:10

    Great article, and I have been browsing through your blog – it’s really helpful to have it all there put so clearly.

    Just wanted to clarify though – you seem to say that the primary symptom of POTS was fainting – but I thought the primary symptom was an increase in heart rate (especially as blood pressure can rise in POTS when standing). http://www.patient.co.uk/health/postural-orthostatic-tachycardia-syndrome

    I am currently being investigated for POTS – my heart rate jumps by more than 30bpm and to more than 120bpm when standing but I don’t feel faint, rather that all my oxygen has dropped out. My blood pressure momentarily dips and then rises to normal.


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