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

This and That

There is no central theme to this post. It's more of a hodge-podge collection of everything significant that has happened lately.

Some good news to begin. My fasting glucose levels were normal this time so it seems I am out of the woods, for the time being, with regard to diabetes. That's a relief as it would just have been one more health problem to manage!

I'm currently weighing up how best to manage the whole doctor-patient relationship with my GP. I think I'm still minded to keep control of my treatment plan but I am also acknowledging that I can be a little 'full-on' and hard-headed sometimes and no doctor likes a patient who tries to tell them their job! I've worked through the whole 300+ pages of the NHS NICE guidelines and now have a better idea of what I can and can't ask for. Realistically it is just going to be about symptom management rather than anything that will allow me to return to a normal life but I've already accepted that's how things are now.

One thing I'm wanting to ask him is whether he'd sanction Modafinil/Modalert on prescription. It seems to scare a lot of doctors as it can be equated with amphetamines (speed) but it works in a completely different way and doesn't seem to have the risks of raising heart rates or encouraging dependence. I think it has been used 'off-label' for M.E. patients but not widely. Anybody out there had any experiences of this drug?

Another decision i'm chewing over is whether to get a wheelchair. I have a feeling it would make a huge difference to my quality of life as I could get out and about again but I'm constrained by being too worried about the reactions of others. I know I should get over that and I'll try to - it's just that I don't have the energy or inclination to deal with other people's bullshit. There are still so many cases of people with disabled badges on their vehicles being abused for 'being perfectly fine' or people being told they are only using a wheelchair due to being unhealthy or lazy. I mean, I can walk - it's not that I've lost the ability ... but more than a few steps and my heart rate is racing, my muscles are going into spasm and I feel like I'm going to faint. A wheelchair would mean I could try to start doing normal stuff again and have the occasional day out or whatever. I think I will ask for an Occupational Therapist from the local council to come out and assess ways my everyday life could be made easier.

Oh, and I have a new favourite thing. Magnesium. I never realised how beneficial it could be for so many things. I'm now using a magnesium-oil spray on my skin and I have a big sack of Epsom Salts lined up for baths. I'm already seeing benefits in terms of headaches and muscle pain etc. There's apparently a great book called The Magnesium Miracle that gives a lot of detail of the various benefits of the mineral but I haven't got around to checking that out. All I know is that it seems to be having a positive impact so far.

Finally, I'm immensely relieved to have found a support group that I have such a good feeling about. It has been set up by the production company behind the "What about ME?" documentary and group members post their individual stories, and subsequent updates, in the form of videos. I've really struggled with the isolation this illness has caused and with the fact that, with the best will in the world, most people don't understand what life has become for me. Now I have a place where I feel understood and accepted and that's worth such a lot. I might even start posting video updates here instead of writing, haha.

The group can be found here: Vimeo

That's enough for now, I think. Thanks for listening to my ramblings - take care!

Barry