New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!

Shake Me & I Rattle

As promised, I'm finally getting around to setting out the pills and potions I currently take.

Unfortunately, the nature of the illness is such that there is no cure and all we are really doing with medications is symptom management. Furthermore, what works for one person seems not to for the next person. It's a very inexact science! With that in mind, I need to state for anyone reading who also has M.E. that trial and error is usually necessary. Also, because I have become ill fairly recently, I am still experimenting to see what works.

So, let's do a quick run-through:

Ascorbic Acid (soluble Vitamin C) -1000mg - This is how I try to start every day. With a glass of effervescent orange-flavoured Vit C. This is no hardship as I enjoy the taste and the fizzing sensation. The benefits of this are too long to list but most important for my particular needs are that Vitamin C is great at scavenging free-radicals and providing immune support. Bear in mind that we never absorb all of the Vitamin C we take in supplemented form. I think it's up to around 20% we absorb and the rest is urinated. All the more reason to also get Vitamin C from food sources.

BioCare Multivitamin - A word of warning on multivitamins. They aren't all the same. Some are really poorly balanced with too much of a certain element or not enough of another. I like the BioCare range as it seems to have the right balance.

Vitamin B3 (Niacinamide) 500mg - Multi-faceted benefits attached to this including blood sugar control, mitochondrial support and a calming effect.

Vitamin D 500ui - Best source is sunshine but being housebound puts paid to that option. Deficiency is very common in the UK and has been shown to be present in various diseases.

Flaxseed Oil 2000mg - We've all heard plenty of the benefits of Omega 3 oils. Whether it be brain food or joint care, Omega 3 can help. Personally, I avoid the fish oils as they are more prone to being loaded with metals (unless you spend a lot on ultra-pure capsules) and I don't like fishy burps much! Flaxseed oil suits me better.

Chromium 200ug - I had a scare with my blood sugar levels and started taking this to assist. My last test showed a decrease so I think it's having an impact.

Co-Enzyme Q10 100mg - Assists in mitochondria (and thus energy supply) and is a powerful anti-oxidant (those pesky free-radicals again). Also seems to provide some support for the gut and has anti-ageing properties - a wonderful drug! It's not a cheap option and be wary of the more budget brands as absorbtion might not be very good. I use Doctor's Best brand.

Milk Thistle 5600mg - When we take a lot of pills our livers have to work extra hard to detox. Milk thistle is supposedly a good help to your liver in this respect. It's also been heralded for helping digestion and reducing Irritable Bowel Syndrome.

L-Carnitine 1000mg - I must admit, I don't always remember to take these as I have run out of room in my pill dispenser! It's an amino acid most commonly found in red meat but few of us eat enough red meat to correct a deficiency. Like many of the other supplements I take, it has been shown to support mitochondrial function.

GABA 1000mg - Another that I don't always remember to take. It has been shown to raise levels of a neurotransmitter that brings about a more relaxed state and can help sleep. I have to say that I haven't seen any benefit from this so far and I probably wont buy more when my stock is depleted. Mind you, me and sleep are hardly friends and I'll be seeking out some dedicated sleep meds from my doctor in due course.

Magnesium Oil - My new favourite. As I've mentioned before, the benefits of magnesium are many. For me, I'm finding it is helping slightly with my muscle spasms and even seems to reduce the severity of my headaches a little. A good way to tell if you are deficient is to spray some onto your skin and see if you get a strange tingling sensation. Epsom Salts are good for bathtime too!

Finally, I try to use a plant sterol spread (Benecol in my case) to keep my cholestorol under control.

So that's my basic list of supplements at present. I am sure the list will change in due course as I will discontinue certain elements or introduce new ones. If anyone has any comments on what's included or suggestions for trying something new please get in touch!

Take care,

Barry

Confusion & Unpredictability

It's unfortunately been a while since I've been up to adding a new post. My intention was to start getting into some detail about how I was planning to treat my illness but my health has taken another downturn lately.

Before all this started, I had some problems with face and head pain in the form of TMJ (tempero-mandibular joint ... the joint that holds our bottom jaw to our skulls) inflammation and cluster headaches. Alas the cluster headaches seem to have returned. This isn't entirely surprising as, by their very definition, cluster headaches come in...well...clusters. You get them everyday for a while and then they go for a while. They are also known as 'suicide headaches' and, now that I've experienced them, I can vouch for that description not being too dramatic. I can completely understand why sufferers kill themselves, or maim themselves, to get rid of the constant and extreme pain. Best description I can give is a hot poker being stuck through the eye. Not nice. It actually creates a strong desire to gouge out whichever part of the head/face is currently painful and sufferers have been known to cut chunks out of themselves in an attempt to stop the pain. Thankfully I'm mostly too weak to go in search of sharp objects ;)

Anyway, all this means that my plans have had to change slightly. I didn't want to put any other prescribed medication into my body but I'm reluctantly going to have to start taking beta blockers again as they seem to be the thing that gives me some relief. Apparently something to do with constricting blood vessels and quietening down pain receptors. I got a bit spooked when the headaches started up again as they did so at the same time as my new supplement regime. So, I temporarily stopped taking anything else for a few days until I worked out it was the return of cluster headaches. Now I'm gradually working back up to full dosage of the supplements and I'll post details of what I'm taking in due course.

Which leads nicely onto what I want to talk about next. I thought I was being so very smart by reading up on every supplement and drug under the sun to see what the latest research findings were and what might benefit me. Unfortunately it hasn't quite worked out as planned though. The more I learn, the more confused I become. For example, imagine you never did any research ever and your doctor said to you: "take these pills, they will make you better" ... all nice and simple, right? Now imagine you decided to do a bit of research on those pills and found lots of documents pointing out they were dangerous and ineffective and then lots of other documents saying they were the best thing ever. Who to believe?

With a few exceptions, I can now make convincing arguments about why something is beneficial, pointless or potentially damaging. Very frustrating for someone like me who works with absolutes and needs black and white answers. However, I need to take something rather than just letting nature take its course so I have to weigh up all the conflicting evidence and bite the bullet. I will and I have. More on that in a future update.

Finally, my symptoms now include light sensitivity and noise sensitivity. The sound of my cat cleaning itself or the washing machine has actually become painful to me and the light is a problem too, even at low levels. All this means I am now having to use sunglasses and ear plugs indoors and will probably have to move into the spare room where I can avoid the everyday noises and activities of the household. I really don't want to cut myself off from what's going on in my own house but I think I'm going to have to take notice of these symptoms and act accordingly. Sorry I don't have anything more positive to report for now but at least the unpredictability of this illness keeps things interesting!

take care,

Barry

Treatment Plan - Part 1

In my last update I mentioned that I was now focusing upon managing my symptoms rather than seeking out some miracle cure. Today I am going to begin documenting the various things I will be using to help manage my illness.

There are two reasons why this is important now. Firstly, and most obviously, I have very little quality of life as a result of the symptoms I am currently 'enjoying'. If I can lessen the severity of those symptoms by as little as 20% I will significantly increase the range of activities I can take part in. Small things to most people but things that I've lost the ability to do for myself like fixing a meal or walking to the end of the street. Secondly, I need to be very mindful of the impact of my illness on my internal functioning. Statistically I am now likely to die of a heart attack at 58 (rather than 73 if I didn't have this illness) and I have a much higher likelihood of strokes, diabetes, organ failure and cancer. Cheery stuff huh?

So, it's important I do as much as I can to sway the odds of reaching a ripe old age in my favour. That is the long and short of my treatment plan. It is accepting I am unlikely to cure myself but it is making use of established clinical outcomes and robust scientific trials to give myself as many small advantages as I can. I mentioned previously about the dilemma of spending time, money and hope on treatments or just letting things take their course. I'm determined not to just give up and so the treatment option is the right one. However, I will apply a strict qualifying criteria to every potential treatment option. It has to be proven to have shown positive results and, just as importantly, it has to be free from excessive risks or side effects. Most prescribed medicines that attempt to treat many of my symptoms have other unwelcome impacts upon the way my body manages itself and those will not be considered by me.

For anyone following this who does not currently have the same illness as I do, I should also mention that 90% of what I end up doing or taking will apply just as much to general good health. Each part of the treatment plan plays a part in addressing basic imbalances within the body.

The first two elements I want to mention are both examples of what I previously considered to be champions of marketing rather than truly beneficial treatments. However, after a lot of reading and understanding the science behind them and how they change things within our bodies I am convinced both are vital.

Firstly, probiotics. I'm not going to cite individual studies as there are too many to mention but suffice to say that I am now satisfied that maintaining a healthy gut flora is definitely worth the effort and expense. We still don't fully understand all of the benefits of doing so but what is understood is impressive. A good probiotic can, amongst other things, regulate blood sugar levels (good for avoiding diabetes), boost our immune systems (good for fighting off viral infections - 80% of our immune strength is controlled via the gut), control yeast levels (good for breaking free of cravings for sugary processed foods etc) and can even help our waistlines! (sugars and starches are converted to short-chain fatty acids which are used for energy).

The emphasis has to be on a GOOD probiotic though. It is my belief that the heavily-marketed yoghurts are ineffective as the bacteria is unlikely to make it past our stomach acids. Similarly, the popular drinks are likely to be heavily processed and contain too many sugars and starches to have enough benefit. That leaves two choices - either grow your own bacteria and top it up with some sort of milk product (not as hard as it sounds, people have been making their own yoghurt for a long time and it's the same principle - a kefir starter kit can be bought for about 6 quid) or find a good probiotic in the form of gel tablets (they will make it past the stomach acids).

Secondly, I need to keep careful control of cholesterol. By that I mean keep levels of 'bad' cholesterol as low as possible and raise levels of 'good' cholesterol as much as I can. My heart is not working as efficiently as it should at the moment and is under more strain from minor exertion (standing or sitting in my case) so it's important I don't make matters worse. I don't want to mention brand names but I am introducing a well-known spread that is proven to improve cholesterol levels. I used to think this was another example of clever marketing as a means to sell expensive products but I have changed my mind. I have now read enough independent studies to suggest it not only works well but it works impressively quickly. In fact, more quickly than taking what is usually prescribed for high cholesterol levels (statins - they have lots of nasty side effects such as supressing some of our bodies' natural functions).

So, that's the first two parts of the treatment plan. Neither is very exotic or earth-shattering and both are widely available. The combined benefits are proven and significant enough to justify the cost and are especially important to someone like me whose natural functions are presently haywire. As I've said though, a GOOD probiotic and an effective plant-based cholesterol management food (such as a margarine) will also have huge positives for almost everyone.

Ok, that's long enough for now. Next time I'll start to go into some detail about some of the vitamins that are important and why most people waste their money on supplements!

Take care,

Barry

Rest or Treat?

The focus of this post is a dilemma I have been wrestling with for some time now.

To illustrate this dilemma I will begin by stating what I KNOW and what I DON'T KNOW.

I know that I am not well enough to live a 'normal' life. I know that a bunch of the everyday bodily functions we take for granted have become faulty within me. I know that I cannot seem to produce or restore energy for my body to use. That is pretty much all I know.

Then we get onto what I don't know. I don't know what exactly is wrong with me. I don't know how exactly to get better. I don't know what exactly is going on within my own body (at a micro level).

As this illustrates, I'm pretty much clueless still. Despite all my research and time spent considering different theories I am probably no closer to understanding my own lack of health. From the beginning I have wrestled with establishing the best approach to looking after myself and helping myself get better. I have no energy so I try to rest a lot. This seems sensible as surely my body is telling me that's what I need? On the other hand, I feel I should be doing something specific to help my recovery. The NHS is even more clueless than I am on this subject, it seems, so that's not an avenue of help for me. I research supplements and alternative treatment options and begin filling my body with various things that might help.

Which approach is correct? Rest and recuperate or actively treat the illness? This is where things get a little circular. Let's go back to something I DON'T KNOW..... I don't know exactly what is wrong with me.

This is the fundamental source of frustration for me and makes my recovery plan a bit like pissing in the wind. None of the explanations my medical advisors or the community were providing were satisfying my mind as they were vague and, in some cases, downright illogical.

For the purposes of having a label attached to my illness I say I have M.E. or Chronic Fatigue Syndrome. Dig deeper into these terms however and it's a mess of contradictions and poor logic. 'Experts' no longer seem to be able to explain the difference between M.E. and CFS and patients have come to use the terms on an interchanging basis. The World Health Organisation classify M.E. as a neurological condition. The neurologist I saw pretty much said there was nothing wrong with me. M.E. in pure terms is an inflammation of the brain stem and/or spinal cord as far as I can tell.

Do I have M.E.? Is my spinal cord and/or brain stem inflamed and causing neurological problems? You'd think that'd be an easy question to answer but it seems not.

Then we have Chronic Fatigue Syndrome. Again, none of the 'expert' explanations were satisfying my mind. There is much talk about the viral link now and this has never seemed right to me. I'll state again for the sake of clarity that I am glad it is getting positive media attention but it seems to be missing the point as far as I can see. Chronic fatigue is, in my eyes, a symptom and nothing more. Any viral infection we might have, be it XMRV or anything else, is another symptom. This does not explain the root cause. Of course people with messed up immune systems are going to be susceptible to catching a virus. Of course people with messed up bodily functions are going to suffer fatigue. There is surely a bigger picture here that we are missing.

So, with all this in mind, what do I do? My approach thus far has been to mix rest with supplementation. I'm sure none of the supplements I am taking are doing me any harm but are they helping? Who knows. What I do know is that I am spending a considerable amount of money on them without knowing if they will help. I'm effectively housebound and am earning very little so spending money is limited.

All of this frustration and guessing doesn't sit well with me. I am the sort of person who needs clarity and definite answers. A clear path to follow. By chance, that path is becoming a little clearer now my research has taken me in a different direction. This post is already long enough so my next update will focus on what I now know and how I am going to use that knowledge to formulate a treatment plan for myself.

Take care,

Barry

Is A Cure In Sight?

Wow, I've just realised how long it has been since I've posted an update. A lot of the time the days just merge into each other so it's difficult to keep track of time properly. In fact, I often have to ask my girlfriend what day it is!

There is a decent chance that even those who don't actively follow M.E./Chronic Fatigue Syndrome stories will have heard about the recent medical studies done around XMRV and I want to focus today's update on the subject.

As this relates to a viral infection, it probably makes sense to begin with a very basic overview of a virus. A virus is something that reproduces inside the cells of a living host. Infected cells are then forced to reproduce thousands of identical copies of the virus.

The reason this is potentially relevant to Chronic Fatigue Syndrome (CFS) sufferers is that two studies have identified a large number of CFS patients having a particular viral infection. This infection is classed as a retrovirus due to the way it impacts our DNA and the proteins that envelope our cells. The most well-known example of a retrovirus is HIV (human immunodeficiency virus) but it's vital that I stress that HIV sits alongside many other types of retrovirii, including murine (mouse), avian (bird), bovine (cow), simian (monkey) and feline (cat) leukemia. What is NOT being suggested is that CFS directly relates to a sexually transmitted disease.

So, to make a long and rather complex story short, the reason all this gives hope to CFS sufferers is that it suggests a link between viral infection and CFS. Personally though, I am not convinced. Before explaining why, I should state that I have no medical qualification and that I am fully supportive of all research that aims to isolate the cause of CFS. Sufferers have for too long had to put up with their condition being regarded as psychological and the sooner we dispel that myth the better.

However, I'm yet to be convinced that XMRV or MLV or any other kind of virus is the answer. The fact that a high proportion of CFS sufferers have a virus seems to me to be more likely indicative of viral infection being a symptom rather than a cause. Let's take a brain tumour as an example. Severe and persistent headaches are present in many patients who are found to have a brain tumour. Can it therefore be deduced that headaches cause tumours? Of course not - the headache is a symptom rather than a cause. I see XMRV as the equivalent of the headache. CFS patients have poor immune systems and are prime targets for a host of infections such as flu etc. I think it's more likely to be the case that viral infection happens as a result of CFS rather than the other way around.

As I've said, I'm just an average joe who seems to have CFS and I am in no way medically or scientifically qualified. There is a huge chance I am completely wrong in my suppositions and I hope that I am wrong. If the cause of CFS can be ascertained and treated it will make a massive difference to my life and the lives of others and I shall watch this story unfold with great interest and hope.

My next update will hopefully focus on more personal matters such as my scan results and my immediate future in light of recent decisions I've had to make.

Take care,

Barry

What's The Problem With You?

When I'm asked what exactly is wrong with me (in terms of symptoms rather than a label) it isn't easy to respond.  On the one hand, I don't want to sound like a whinger who is providing a laundry list of symptoms but, on the other, I don't want to have what I'm experiencing being trivialised or misinterpreted.  So, I'm hoping that this post will go some way towards providing a much more considered and accurate overview than when I'm put on the spot.

A major element is fatigue.  It is difficult to encapsulate what that means as common usage of the word relates to 'feeling tired' and this is way beyond that.  Although I still haven't exhausted all the tests the medical profession want to do on me before offering a diagnosis, it is looking likely that Chronic Fatigue Syndrome will be the outcome.  Initially, I objected to the term as it suggests 'being very tired' but, now I've thought about it some more, it actually does a pretty good job of describing how things are.  Chronic means long-term and constant and fatigue means lacking in energy.  Put simply, my body and mind are almost constantly without energy.

What this means in practical terms is that my body is unable to produce enough energy for everyday life.  I will go into all the medical elements in another post, and also detail how my illness escalated, but for now I just want to focus on how I am at present.  Not being able to top up my energy reserves has consequences for pretty much every part of being alive.  Sleep doesn't refresh me and laying staring at the wall doesn't refresh me (although both activities do provide benefit in the shape of not sapping any more energy).  Any exercise or mild exertion leaves me wiped out.  This includes humdrum little stuff like walking to the bathroom or having a shower etc.  

Worse than the physical elements though is the mental fatigue.  Rightly or wrongly, I've always placed a great deal of my self-esteem on my intelligence and I now find myself stumbling over words, being stressed out by questions and becoming wiped out by the simplest of mental exertion.  My memory has become unreliable and I sometimes find it difficult to differentiate between something that has actually happened and something that I dreamed about.

It seems that a lot of the problems come about because of my hypothalamus.  This is a part of the brain located just above the stem and it controls the automatic elements of our nervous system.  So, things like metabolism, body temperature, heart rate, sleep cycles etc.  All of these 'automated' functions seem to be haywire for me now.  For example, I can't cool down and my heart rate becomes worringly fast when I stand up and it feels like it will burst out of my chest.

So, that's basically what is going on for me right now.  I'll be talking about the research I do to find potential 'cures' or at least making things less problematic in future posts and I'll also deal with the impact on others.  For now though, I hope this overview has been informative.

Take care,

Barry