A New Discovery

BetterYou Vitamin B12 Boost

I was reading a magazine recently and this product caught my eye! It's a Vitamin B12 supplement in the form of  a spray, which provides a high dosage of Vitamin B12, Chromium and Green Tea Extract when sprayed under the tongue.

Vitamin B12 plays a key role in the normal functioning of the brain and nervous system, as well as energy. Even health people need Vitamin B12 t function properly, but if you have a neurological illness such as M.E, with one of the significant symptoms being overwhelming fatigue, it is even more important.

The information on the website reads:-

B12 has been proven to help reduce tiredness and fatigue as well as aiding concentration and memory. Boost B12 Oral Spray delivers 1200ug of this vital vitamin along with 40ug of chromium and 16mg of green tea extract with every dose (4 sprays).

The combination is delivered orally under the tongue, quickly entering the bloodstream for the ultimate in bio-availability and convenience. Delivering 1,200mcg of vitamin B12 per dose the bottle lasts an impressive 40 days. Ideal for those with an active lifestyle, if you're feeling increasingly tired or for those who travel. 

Having recently relapsed, I have been looking further for supplements which might make my day just that little bit more bearable. So I purchased one of these, I have now been using it for a few days and I do feel it has had an effect. Four sprays under the tongue in the morning, and this gives you 48,000% Recommended Daily Allowance of B12, 100% Chromium and 0.5mg of Green Tea. I have already spoken  about Green tea in another post, and how much it has helped me since I have been drinking it on a regular basis. 

Chromium plays a part in the release of energy, supporting carbohydrate, fat and protein metabolism, and helps maintain healthy blood sugar levels.

 With hypoglycaemia being suspected in many M.E patients, this appears to be a sensible supplement to take.

I feel this spray would be a great supplement for not only M.E-ers, but I healthy people too who perhaps are feeling a bit burnt out due to lifestyle factors. It has a sweet apricot taste, which is nice as I was expecting it to be bitter, but it tastes fine. I am very happy with it so far, although it is not a miracle cure for fatigue, and by no means is the fatigue less debilitating, but I feel it takes the edge of it slightly. When you have persistent fatigue day-in, day-out, the smallest relief is like a godsend! I would definitely recommend this spray, it can be found online as well as in Holland & Barrett.

BetterYou, who make the spray, have a range of supplements including these sprays with other vitamins - and I will definitely be trying some more!

How Do You Explain What M.E Feels Like?

Explaining M.E to the people in our lives can be difficult. Here are some quotes from sufferers who know exactly how it is!

      It's foggy and muddy in here

I have FM/CFS for 11 years.It feels like walking in mud,dragging a ball and chain in the fog.its so hard to work up to anything.It's hard to talk and exhausting to have to repeat anything.God how hard that is!Just let me sleep-night is the enemy.Nobody gets it.I look fine-why do i make everything seem so difficult??cause it is(for me).Just look at me and understand.Stop asking how i am.it doesnt change and it makes me feel as weak and embarrased to say i feel like crap yet again.Your worst day is my best day.don't you get it?AAAAHHHHH

Out With the Bathwater!

It first hit me in 1992 after a very stressful house relocation,and I thought it was just exhaustion.After a week,blood tests showed Epstein Barr and I had 3 months in bed sleeping most of the time.Family couldn't understand and my daughter,aged 21,thought I had somethig contagious,and wouldn't come into the room.Very hurtful! I felt like someone had pulled out the plug while I was standing in the bath and my energy had gone with it. I have had one major relapse,2002,after a flu,but when I feel cold sores developing,and generally feeling run down,I know to start taking a tonic high in Echinacea and vit C.That helps,but it usually means a few days in bed.Like others,I hesitate to pre-book outings as I have had to cancel so many times over the years. Be kind to yourselves,and laugh a lot,it helps.

How I feel about ME

When I smile I feel a hole, a heaviness inside, a place where I am empty, a feeling I cannot hide, I try to smother this sadness, with friendliness and smiles, I fill my heart with gladness, yet secretly all the while, you coil tightly around my heart, I feel your weighty chains, you try to tear me apart, but I will not play your game, so I carry on with smiles, and laughter too and hope, that one day you will loosen, and let me free to cope.

Every chore is like doing a marathon

I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

Flu bug

At the beginning, the first couple of years was just like that, like having a really really bad flu, and just so weak, dizzy, achy, my brain hurt, eyes always wanted to shut. Now that just happens sometimes, although excitement over things that ask for energy are still low. 

Exactly or Ditto

Adrienne - It feels as if you have ESP and have read my thoughts. Everything you have said I have felt. Sometimes even the little things seem so hard to do. One problem I also have is that when I am feeling good (which isn't often enough) I over do things and then I feel like I have been run over by a steam roller. Sometimes it even seems hard to take a deep breath. I had Glandular Fever about 15 years ago and life hasn't been the same since. I would love to hear from anyone who has a similar story. I am so sick and tired of myself being sick and tired. I'm at my wit's end. If I was told I had a fatal disease and had only 6 months to live, it would be a blessing. Everyone take care, Mary-Anne

Like being under anesthesia

My life has not been the same for the last 12 years since I was diagnosed with fibromyalgia and Chronic Fatigue. I feel like someone has injected me with anesthesia and I am about to have surgery. You know when they say count from 10,9 8 etc.... and you feel like you are falling into a deep sleep. That is how I feel all of the time. What a horrible way to live. I hope and pray that someone finds help .

Explaining CFS

I am a veteran when it comes to having CFS acquiring this in 1984 at age 44. I am in the majority as Dr. Paul Cheney once explained to our support group. We get sick and then we keep acquiring all these wierd symptoms. To describe it would be to say it was like a combo of sleep deprivation, flu, hangover, and jetlag all rolled into one. Then, as we age (I am soon to be 70), we acquire new issues and its difficult to separate CFS from aging. To describe in more detail would take more space than what is allotted here.

F.A.Q's By Non Sufferers

It is very difficult to understand any illness unless you have experienced it yourself, that is why i have researched and compiled a list of 'F.A.Qs' often asked by non sufferers. Hope it is helpful!

  What kind of symptoms do people with ME/CFS have, aren’t they just tired? 

Cognitive dysfunction, including impaired memory or concentration , post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercis, unrefreshing sleep, joint pain (without redness or swelling), persistent muscle pain , headaches of a new type or severity, tender cervical or axillary lymph nodes, sore throat (and many more) Telling  a person you are tired too is the ultimate insult to someone with ME/CFS.

Do people ME/CFS recover?  

The disease can be managed, but no cure exists.  People with ME/CFS often live in isolation in part because their activity levels do not allow them to leave the house, work, or even get out of bed depending on the severity of their condition. However, isolation also serves as a way to avoid viruses due to an already compromised immune system. 

But I’ve seen people with ME/CFS and they look okay? How can that be possible?

 People with ME/CFS endeavour to take part in what activities they can. Unlike people who suffer from depression, they have not lost any interest in hobbies, activities or life. In fact, not being able to participate in these things causes patients with ME/CFS an enormous amount of grief. What you see is a person with ME/CFS having a good day. What you will not see is the price they will pay later for that “good day”.  People with ME/CFS can become sicker if they do too much. This costs them jobs, friends, and support.

You just said that the only drug for ME/CFS was also for AIDS and Cancer, how can that be possible?  

 ME/CFS is not chronic fatigue. Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune disease without a known cause. ME/CFS patients have been compared to Cancer and AIDS patients in their last two months of life.

Can I catch ME/CFS? 

You will not catch ME/CFS from someone by talking to them. However, it has been transmitted by blood transfusion, and there have been outbreaks of it in communities in the past. At this point in time, there have been 5 genes associated with ME/CFS, and most people who have it caught it after having any virus such as chicken pox, mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not to donate their organs or blood because of potential undiscovered agents in their blood.

But what if I have a friend with the disease, what can I do for them?  

Ask them how they are. Ask them how they are coping. Ask how you can support them. Many patients are living isolated lives. It is painful for them to see so many people do what they cannot do. Many patients cannot use the phone or listen to music because noise and light drains them of energy. They cannot make appointments because they do not know if they will be awake, or strong enough to go. So understand when they cannot see you

Do people die from ME/CFS?  

Yes, the most famous case is Sophia Mirza who died at age 32.  She was sectioned in the UK because she would not get better, and her subsequent “psychiatric treatment” led to her death. When her body was autopsied, nothing was found, but in an independent medical examination inflammation was found in spinal root ganglia. It was reported around the world that she died of M.E. However, her death certificate read “CFS” because the pathologists who agreed what the disease was argued about the name and CFS was the “modern term”.  People with ME/CFS have a lower life expectancy than the normal population and are more likely to die from cancer, heart disease, organ failure and suicide (due to lack of support).

10 Things I Hate About Living With M.E/Chronic Fatigue Syndrome

Being a sufferer myself i now understand how hard it is to live with M.E/Chronic Fatigue syndrome. It is one of those illnesses that you really will never understand unless you have experienced it yourself. I thought i would share with you my 10 Top hates about living with CFS/M.E! Some funny, some frustrating.. And not in any particular order. I am sure you have your own so feel free to add them!

1. Tasks that were miniscule before i was ill are now a huge effort. Never did i think that walking down the road or holding a ten minute conversation would exhaust me so much, now i understand that it can and have to keep reminding myself that what used to be a harmless daily task could now be enough to mess me up for hours/days!

2. Even the smallest noises can frustrate me to the point of tears.. If someone had said to me before i was ill that the television being a little too loud, or someone speaking a little too loud or dropping a heavy item could make me feel as though i wanted to cry i would have laughed my head off! Unfortunately that is the case! My ears are now so sensitive to loud or unexpected noises and it seems everything is ten times louder than it actually is.

3. Most painkillers do not relieve the tension headaches/migraines. I have always been one of those people that if i have a headache or a bodily pain i reach for the painkillers, quite simply because they work and provide fast relief. This is now not the case! The awful migraine type headaches i experience on a daily basis are rarely relieved by even the strongest painkillers.. Paracetamol.. Co-codamol.. Ibruprofen.. Even those special tension headache tablets.. They will either provide mild relief or work for an hour and then the headache comes back!


4. A lot of people do not understand how exhausted i am. I have always been a sociable person and before i got really ill i enjoyed going out with my friends and socialising.. However now i often have to decline offers of social events and even 'catch-up's for i just don't have the energy to do this. Even a two hour 'catch up' could make me even worse. But what is more frustrating is the amount of people who just don't seem to understand how ill you are.. "Oh it's only two hours" or "Have an early night and you'll be fine".. What people need to understand more about M.E sufferers is that no amount of sleep or rest is going to magically make us better for a day, and pushing ourselves too far could end up making us worse in the long run.

5. Having to explain to people what M.E or Chronic Fatigue Syndrome is. The few people who i have told about being ill, most of them say straight away 'What's that?!' and having to explain over and over again what it is. I appreciate it is not their fault that they don't know what it is but M.E/CFS is a disease that is as debilitating as most other serious medical conditions in the world, and the fact is that people can, and have died from it. More awareness needs to be raised on this matter!

6. People saying "You look well".. It may be a compliment but the fact is that most M.E/CFS sufferers do 'look well' - however inside they are profoundly ill and you just think 'If only you knew how i FEEL'!


7. Fuzzy/groggy head moments.. These can be ever so frustrating, but also rather funny at times too. Like the time i went to pour the kettle onto my dinner, or brush my teeth with the toothbrush i use for exfoliating my lips.. (Ew!!) Annoying on a daily basis but provides light laughter in times like this!

8. Mixing words up.. So many times i have been half way through a conversation and then as quick as lightning completely forgotten what i was going to say! Or times when i completely get my words confuddled.. Sometimes you wouldn't think i was 24, but 4 haha! However i know this is just part of the illness, as frustrating and embarassing as it is!!

9. People asking how you feel or if you are feeling better.. Obviously you don't always want everyone to know about your illness for fear of having to explain it all over again or people feeling sorry for you, but sometimes people know you are not well but do not know the nature of it. The amount of times people hav asked me 'Are you feeling better now' and i have just replied 'yes thanks' as i can't be bothered to explain it all is unbelievable! Sometimes it is just better to not say anything,


10. Fatigued constantly.. But often you can't sleep! I am sure every sufferer straight away knows what i am taling about here! You spend all day/evening feeling so fatigued you can barely do anything, and all day your eyes are just begging to be closed.. But when you hit the sack in the evening.. Sleep is so hard to come by!! The headache, the grogginess, night sweats and the general feeling of being 'unwell' make it so hard to relax enough to sleep, it's like a catch 22. The way i deal with this now is to literally snatch sleep when i can.. Whether that be 12pm.. 4pm.. or 9pm.. If it means getting some of what is so important to us CFS sufferers then so be it!

So that's my moaning over.. Sorry to moan but sometimes you just needs to let it all out!!

Common Facts About Chronic Fatigue Syndrome/M.E

Here i have researched some common facts about M.E that you may or may not already know.. Either way, the more we understand about our condition the better chance we have of beating it!

ME is sometimes called Chronic Fatigue Syndrome (CFS) Chronic Fatigue and Immune Dysfunction syndrome (CFIDS) or post viral fatigue syndrome (PVFS)

M.E is recognised as a neurological illness by the World Health Organisation and has been categorised as such since 1969.

  

M.E/CFS also affects children  - an estimated 25,000 young people are suffering from the illness

In the UK, M.E/CFS affects 250,000 people - or 1 in 250

Injury, illness and stress (Physical and emotional) can make symptoms worse 

Chronic Fatigue Syndrome dates back to the 1700's 

No test can accurately diagnose the condition - it is, instead, diagnosed by process of elimination by a medical professional

M.E can last for months to many years

M.E patients are permanently deferred from donating blood or organs