It’s in my blood… & it’s hopeful

This past Monday (29th August) a study was released by the University of California which confirmed a chemical signature in the blood of those with M.E./CFS. (One of the illnesses which has made me mostly housebound and stolen my ability to work, travel, socialize, do most things like a regular human being.) If replicated, this means that a blood test could be created to diagnose M.E. For any non-M.E-ers, this is a BIG deal to us M.E. lot.

Diagnosis is one thing that has seriously muddied the waters of ME/CFS research because many doctors in the UK use the rather rubbish Oxford criteria whose only requirement is fatigue for 6 months. Which, by the way, you could have with about a bajillion other illnesses and M.E. is unfortunately far more generous when it comes to nasty symptoms. This then makes research using such ill-diagnosed participants pretty useless for M.E.

The other exciting finding is that the signature pattern of metabolites in the blood, indicated a hypometabolic (slow metabolism) state of hibernation/survival (only seen in a type of worm) in 95% of ME/CFS patients. Now THAT is big. And feels pretty accurate as I do feel somewhat like a floppy, exhausted worm as I lie here waiting to have enough energy to make it to the kitchen and make a cup of coffee… Although I don’t believe worms drink coffee.

What this all means is that us ME-ers are in a constant state of hibernation/survival, wherein our bodies put growth and repair on hold and “survive” becomes the goal as opposed to”thrive”. This has been compared to “Dauer”, a stage that occurs in threadworms when threats which could otherwise cause cell death occur. They can survive like this for a matter of weeks, but it is not meant for a long term state. However, in M.E. sufferers it seems to occur for years and decades, possibly after encountering a threat such as a virus. During this state, the body – and person – suffers as it is no longer being given the normal, optimal supplies it needs to function properly.

Essentially, we are in a hypometabolic, unrelenting state of survival, which feels AWFUL; like being partially starved of food, water and oxygen, all day, every day (for 8 years in my case). Although mercifully still getting enough, to stay alive, just. It all sounds pretty grim but understanding the mechanisms behind our illness are the first steps towards treating them and with more research like this, we might not have to just survive for too much longer. Fingers, toes and knees crossed.

For a proper, in depth explanation of the findings (from someone who really knows what they’re talking about) click here

Thanks for reading,

Lara

P.S. I’m organizing a Millions Missing Protest in Oxford on September 27th, and we need more shoes to represent those with M.E. who are too ill to protest and participate in normal life. So if you’re an M.E. sufferer please send a pair of shoes along with your name, how long you’ve been sick, age and what you’re missing from your life before M.E.

M.E. Awareness Week

As you probably already know, May is M.E. Awareness month and May 12th (today) is International M.E. Awareness day. I wanted to write something powerful and awareness raising but I didn’t know where on earth to start. Not as in I don’t know anything about the disease, or the political ins and outs of its shocking lack of recognition. I’m simply sick of trying to convey how sick I and many millions are.

Yet I have to prattle on about it because it has been so ignored for so long, and I know there are many other M.E. fighters out there suffering far worse than me. They can’t often speak for themselves, so I need to.

So I thought what the heck. I’ll get a bit more personal and tell you a little bit about the beginning of mine and my family’s journey battle with M.E. .

Where it began..

I can’t say for certain, but looking back, I believe that I have been slowly getting ill since I was about 11. I began to experience pretty bad head pain/migraines. I can only describe it as a mixture of both stabbing pains and blunt pain, as if I’d been hit with a hammer, in the back and top of my head. I remember having to go to bed for hours at a time, but I never thought anything of it. Didn’t go to the Doctor, just got on with it.

School

I had always loved netball, but as my teen years rolled by netball and any physical exertion became harder and harder. I was playing the same amount, so I knew fitness was not the issue, but all the same it got to the point where I could either go to netball practice and not be able to get into school for a few days or I could go home and collapse, hoping to make it in the next day. Again, no doctor. Just getting on with it.

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Before it got really bad… Looking a bit too jolly!

Friends

I loved seeing friends, but again, it would get to the point where my body was screaming at me to go home just so I could collapse without completely embarrassing myself. There were many times when people thought I had just had too much to drink, which to me was a less daunting storyline to go with.

Diagnosis

I was officially diagnosed at 17, after having glandular fever and never recovering. My diagnosis came one short month after my brother had also been diagnosed with M.E. following diagnoses of ulcerative colitis and addison’s disease. I was in total disbelief and downright denial. He had become extremely ill, as in collapsing and vomiting – a lot, hospitalised, mostly bedbound etc… My thoughts at the time: No way could we have the same thing. No way could either of us have something that wasn’t going away. No way could both of my parent’s children have a chronic illness with no cure or treatment. Just no.

Denial

I wholeheartedly denied the illness from my life for almost 2 years. I made it through my last year of college albeit pretty much from home, studying by myself and then somehow after college held down a part time retail job for about 8 months. For those last 2 years of “normality”, every day my body felt like it was being tortured, but I told myself that must be how everyone felt. Again, I needed to get on with it and pull up the old bootstraps. That message along with “stay positive” were the only words I was given by a Doctor upon diagnosis. So I lived by them. I was going to get better if I just thought it hard enough. Right?

Realisation

One day in August I woke up and couldn’t move for the first 7- 8 hours of that day, not even a toe wiggle. That went on for 2 months, every day. When I could eventually move, I would literally roll and fall out of bed onto pillows I’d strategically left the night before, crawl/drag myself to the loo and then possibly slide myself down the stairs which took me a good 10 minutes. The rest of the day would be spent in a room alone, and in darkness, no tv, nothing. Sure, I’d had crashes before, but nothing quite like this.

Disbelief

All the while, my boyfriend at the time was texting me, asking : “Why I didn’t want to see him?”  “Why wouldn’t I go out?” ” Stop being so boring Lara.” All I could think was that I felt like I was dying and that when I did manage to see him, somehow he should have been able to feel the radiation of death coming off my body. I tried to tell him I really wasn’t well, that there was something seriously wrong with me many times, but he never seemed to “hear” it. He certainly never believed it. So I kept trying to live a double life. I wanted the lie of health to be true. I pretended I wasn’t stuck in a darkened room, or that I couldn’t see him texting me but hadn’t been able to reply because I couldn’t move my hands for the first half of that day.

That was almost 6 years ago.

M.E., or Chronic Fatigue Syndrome as it is also unfortunately known, is exhausting, excruciating and many other awful words. The symptoms that run through my body every day are beyond the scope of my former imagination. I couldn’t have made this illness up even if I’d wanted to. And at this age especially, the supposed “prime of life”, for so many years? Hell no.

And yet, the disbelief, and the mistreatment that comes along as a package deal with this disease, from the public to the media to the medical community, even family and friends, somehow outweighs it and brings your life that bit closer to unendurable. A margin which you thought no longer existed. This fight for recognition that you are seriously ill – the dismissal, the cruelty, and sometimes psychological, even physical abuse of patients is beyond my worst nightmares.

So for those us with M.E., belief and understanding, or the want to understand rather (because no one can ever fully understand until they’re in our bodies, nor would we want you to experience this!) that is what could mean the world to someone suffering in silence, maybe even the difference between endurable and un.

Thank you very much for reading, I can’t say how much I appreciate it.

Happy M.E. Awareness Week!

I’d like to add that today, I am very lucky to have an incredibly supportive family and a few lovely friends, you know who you are! I’ve also found so much support and “virtually” met such kind, inspiring people through the online chronic illness community.

Lara

Please sign this petition to demand more research into M.E./CFS in the UK! We need at least 10,000 signatures and we’re not too far off!

A little something that I made for the #MillionsMissing campaign. International protests taking place on 25/05/15 see http://millionsmissing.meaction.net/ for more details.

For details on the London Protest click here.

If you can’t attend, you can still send your shoes to virtually protest!

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