Helpful supplements

The Pro health newsletter http://www.immunesupport.com/ recently had a question of what has helped you, here's a copy of my posting on their forum, not sure which topic it would go under,

The sinatra protocol made a big difference to my energy levels -

L Carnitine + Alpha Lipoic Acid http://healthymarketing.co.uk/acatalog/Woods_Mature_Lifestyle.html
Co enzyme Q10 http://healthymarketing.co.uk/acatalog/Woods_Special_Supplements.html
D Ribose http://www.good4you.co.uk/store.asp?catId=13
Magnesium http://healthymarketing.co.uk/acatalog/Woods_Vitamins_Minerals.html
Vit B3 http://www.drmyhill.co.uk/article.cfm?id=373

Fats - Lecithin and Vit B 15, also Evening Primrose oil or a Fish oil, or a blended oil mix. Your cell membranes are oil based, your body needs fats and oils. http://healthymarketing.co.uk/acatalog/Woods_Special_Supplements.html
http://www.gandginfo.com/en/shop/product_info.php?cPath=10&products_id=28

Adrenal Support - Siberian Ginseng or Rhodiola both help combat fatigue.http://healthymarketing.co.uk/acatalog/Woods_Herbal_Products.html#aW680

Strong time release B vitamin, again helps with fatigue and relaxation. I use the Holland and Barrett one

Chlorella, 6 tablets taken at night helps your body's natural de tox. Absorbs loads of rubbish. Take extra water when using.
Holland and Barrett or Higher Nature

Juicing. I bought a Matstone / single auger juicer and have about a liter of carrot and apple juice each day. Single gear / auger juicers are much better than the centrifugal juicers you get on the hight street, expect to pay about £100 - 150 for one though. Juice is much easier to digest than all that raw fruit. http://www.google.co.uk/search?hl=en&q=matstone+juicer&btnG=Google+Search&meta=cr%3DcountryUK%7CcountryGB

Extra fluid. Filtered water, fruit juice, herbal teas all help.

EFT / Emotional Freedom Technique www.emofree.com
This technique is amazing, initially my rational mind couldn't understand it, but I tried it out on a number of day to day and then more deeper issues and found it helpful. Free to learn and you get helpful email updates. Also Carol Look and Dr Carrington's adaptions are easy to use. http://www.emofree.com/downloadeftmanual.asp

Laughter, funny films or tv series are cheap and easy to get on dvd, Friends, Frazier, Jackass, whatever makes you laugh : )

Powerful daylight desk lamp, helps me concentrate especially in the winter.http://www.argos.co.uk/webapp/wcs/stores/servlet/Search?storeId=10001&catalogId=10001&langId=-1&searchTerms=4310837&go.x=18&go.y=18
http://stores.ebay.co.uk/UKRMART_Daylight-Bulbs_Packs-of-four_W0QQcolZ4QQdirZ1QQfsubZ2879623QQftidZ1QQtZkm

Relaxation tapes, I use the ones by Gill Edwards from www.livingmagically.co.uk , but you need to find ones with a voice that you get along with.

Religeous / Spiritual beliefs. I practise Soka Gakkai Buddhism as I find the chanting useful, but whatever your denomination, a broader dimention to life can help.

Sauna / Steamroom, together with drinking a lot of water this is like a mini detox, only go when I've got the energy though.

Increased water intake, either filtered water, fruit juices, herbal teas, or just a mug of warm water. Even slight dehydration makes symptoms worse.

hope some of these things are helpful.

PS try out this amazing brain massage,http://www.thestar.com/NASApp/cs/ContentServer?pagename=thestar/Layout/Article_Type1&call_pageid=971358637177&c=Article&cid=1142549412026
http://www.neilslade.com/Papers/viewzone/amygdala.html

its wonderful

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Re: Helpful supplements

by Renee on Sat 11 Nov 2006 15:08 GMT | Profile | Permanent Link

Hi
Alot on your list I do already, but a few extra I'm going to try.
I believe in taking action and responsibility in healing oneself.
I too am an SGI member and would like to have contact if you wish
Renee - Slough

Re: Dealing with setbacks

At this precise moment I am trying to deal with a setback and it’s a struggle. So if anyone can share their similar experience or any comfort, reassurance etc, I would gratefully welcome.

I have been working part-time since June this year as an Invoicing Clerk and going back to work was a major transition, especially on the confidence front. Anyway the week before last it was monthend and for the first time I was on my own, as the accountant was on holiday. I felt panicky that I wouldn’t be able to cope and complete the work to the set deadlines, as the week began. I ended up working 4 days on the trot (I usually work Mon/Wed/Fri 4 hours per day, which is good pacing) and on the 4th day worked 8 hours with only 15 minute lunch break, eating sandwiches (I’m wheat intolerant). I felt my only choice was to walk out from the job and I just couldn’t do that and feel I’d lose the progress made. I was completely stressed out and reliving the pressurised environment of my last job (3.5 years ago), pre ME.

Since then I’ve been suffering physically – pain from seized muscles and misaligned joints, mentally – I’m still going over how stupid I was to let this happen and how I should have spoken out and said ‘no’ I can’t do this. Although I did say after I’d finished the work, ‘this must never happen again’ and I have been promised that it won’t. A few of my friends and the accountant said I should be feeling proud, especially as I didn’t make any mistakes. But I don’t feel proud, just that I’ve messed up my progress with ME.

This weekend I’ve been very fluey and in turmoil and panic. Am I relapsing (I’ve had 3 over the 3 years) or have I picked up germs from my work colleagues? My patience seems to have disappeared. I’m going through positive and negative waves. The thoughts and fears of relapsing have been overwhelming, to the point that I can’t see myself coping and living with another relapse which is my fault. I’m hoping because of this feeling, that I haven’t relapsed.

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Dealing with setbacks

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Re: Re: Dealing with setbacks

by JRT on Fri 15 Dec 2006 00:01 GMT | Profile | Permanent Link

I just saw your post - don't be so hard on yourself. When you've got M.E you have to be the nurse and the patient at the same time. There is nothing or no one to stop you going over the invisible boundary between well and ill, so it's no wonder it happens sometimes. No one else knows exactly what you are feeling, and that's why you feel so bad that you let yourself down.

That said, I am exactly the same! I've been off work for a year (yikes) now and in the summer I planned a little BBQ to remedy my waning social life. I totally over-did it with the preparations, which no one hardly noticed, and relapsed quite badly.

Like you, I totally beat myself up of course, but I think what I learned is that the boundaries might not be where you think they are. E.g. the part that got out of control was my habit of trying to be a perfectionist, to struggle by myself, and to please other people. So, now when the cracks start to show, I work out how I can take the pressure off myself, cut some corners and let people think what they want. I think I was trying to hide the illness, so that I felt 'normal' again for an evening.

It was really brave of you to go back into a busy office environment. No one is impervious to that kind of stress, and the impulse to join in the foray would be hard to resist. Maybe you should listen to your 'inner nurse' when things get tough. Mine tells me to have a nice sit down, and cancel a few appointments (but I have to make the tea myself!)

Best of luck!
JT

Dilemma re going back to work

I have had M.E for ten years at least and during that time I have had varying degrees of health from being in bed for most of the time to being almost well. The unpredictability of M.E. is the hardest thing to deal with. At present I have the dilemma of knowing whether to go back to work or not. I am a teaching assistant and only work three mornings a week (down from 5 due to a previous relapse). I have been off work since the summer and this week went back. I coped alright at school and enjoyed getting out of the house, socialising and doing a worthwhile job that I love. However I don't know whether I can or should keep it up as, when not at school, I am no good for doing anything beyond the necessities of making a meal etc. Also I have to get a sick note a week in advance so have to predict how i will be the following week which with M.E. is impossible. However, if I give up work then I will lose all those benefits that work brings and during my good times will feel guilty and bored. I doubt there is really an answer to this but just would be interested in any comments or other people's experiences.

Going back to work - do I mention the ME?

My ME began about three and a half years ago, a year and a half housebound, often in bed, and a year and half up and down but gradually recovering. I now feel that I am ready to try a part-time job. I am quite apprehensive as I still do get bad periods where I think I would find it hard to work but if I don't try I won't know. However, do I mention the ME to any prosepctive employer. I think that if I do I will never here anything. I did give my details to an agency, having mentioned that I had been ill, and have heard nothing from them. I am not that fussy what I do, in fact something not too challenging at first is what I am going for - admin I think. I would like to hear about anybody else's experiences when finding a job and whether they mentioned ME and if so, at what stage.

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Dealing with work

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Re: Going back to work - do I mention the ME?

by AMG on Sun 29 Oct 2006 22:05 GMT | Profile | Permanent Link

I don't think you have to mention ME if you don't want to when
applying for a job. However, as ME/CFS is considered a disability then
there is no reason for you to feel you should have to hide it from a
prospective employer. I agree that it is very difficult to predict how
employers will react?

You may want to check out the Access to Work website, who help employers
(both financially and give advice) to make reasonable adjustments where
necessarily. I'd also advise that you check out the Disability Rights
Commission website for general advice on employment, ie. what reasonable
adjustments an employer could make when employing you (flexible hours for
when you become fatigued, a rest area). All employers have a duty to treat
everyone fairly and this includes opportunities to work.

Probably your best bet is to apply for a couple of 'test' jobs where you
mention it and see what reaction you get? I've had CFS since 2004, but this
was only diagnosed earlier this year following hospital tests. My employers
have had to make reasonable adjustments to allow me to remain in my job, not
without problems as per my own posting on this network. Try to find out as
much information as you can, that's my advice.

Good luck!

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Re: Going back to work - do I mention the ME?

by AMG on Sun 29 Oct 2006 22:10 GMT | Profile | Permanent Link

From my experience I can give the following feedback and advice, hopefully not too long winded for you but I believe all relevant.

Get support from a job broker, offered to people on Incapacity Benefit and
part of the New Deal scheme, it's worth registering. I received regular calls
over a long period of time, giving me guidance eg writing your job criteria
and return to work plan. Doing this makes you be honest with yourself and face the realities of your limits and restrictions. I found what came out on paper was quite different from the thoughts in my head.

They will also tell you about permitted paid work still allowing you to receive
benefits and encouragement to start off volunteering. The latter doesn?t
commit you too much if you have a bad day when you can?t do anything and
is a confidence builder. I was surprised at how much had disappeared over
a short space of time.

Over the last 3.5 years, in between relapses, I did quite a few voluntary
jobs, basically to find out what suited me, pre ME I had a full blown career
as a Business Analyst, but knew I wouldn?t be able or want to return to that
environment The most suitable was with my local library, nice quiet environment
and they always need people and there can be a choice. I ended up typing
into a database on births, deaths and marriages dating back to late 1800s
for people tracing their family tree. Also they set me up to use my computer
at home, so you never know where things lead to and the support you get.
Libraries are very open to disability.

The other advantage about volunteering, it looks good on your CV, it shows
the efforts you make in spite of illness and debilitation and helps explain
the gaps.

During all this time I was applying for jobs and a useful thing to do is
keep a log of all what you apply for. I would cut out the actual ads and
keep with comments and dates. I have to say there were a lot of applications
but I kept going and tried to keep an open mind.

As to mentioning ME, overall I didn't. By law I believe at interview stage
you cannot be asked what your illness has been, of course if you get the
job and have a medical it?s then a predicament. It took me along time to
accept I was disabled although deep down I knew I was. For a lot of applications
made I had few interviews and what I learnt is important is what you write
in the covering letter to make yourself attractive for interview. I was advised
later on to use the phrase ?return to the labour market? and that seemed
to work better. I remember one interview with the NHS where I felt comfortable
to mention ME and I could see facial expressions changing but they thought
they were hiding.

Regarding agencies, I have never rated them highly in getting jobs even when
well. But saying that I did find one who did try for me, however they mainly
had full-time positions.

The other thing to realise is that part-time jobs these days are non too
plenty and when they occur there are many people applying, so don?t let despondency
set in, keep the bigger picture in mind.

One job I got was working for a woman at her home, supporting her language
translation business. I didn't mention the ME. What prevailed was that I
was exploited, I have an impressive CV and the rate of pay was £6 per hour
which didn't match the responsibility I was expected to take on. Only after
a few weeks she went away on holiday and I was left to cope. I panicked and
it all went pear-shaped. When she returned we talked and when she said how
disappointed she was with me, the tears flowed and I revealed about ME. Her
response was initially annoyance and if she?d known I would not have been
employed. By the end of the conversation her compassion shone through and
she wished me well for the future.

June of this year, I got a job more suited to me. It's local, only 7 minutes
in the car, on a village High Street (handy to have shops around), the hours
are 12 per week, Mon/Wed/Fri 9.30am-1.30pm except at monthend where I work
an extra day of 4 hours. It?s a small private company, husband and wife ownership.
I got offered the job at the end of the interview, nearly fell off the chair
and again when the rate of pay was higher. I said I had been unwell and ?life
had thrown it's challenges at me? (good phrase to use), it's true though,
my Dad and my boss died and I was hit in the back of my car by a drunk driver
who drove off.

It?s not been easy for me, every day a struggle but like you said it's about
doing it, otherwise how would we know our real state of progress and the
type of struggles change. Confidence does come back. The other week my boss
did actually ask me what my illness had been, I was on the spot, but I told
him. His response was 'that's really rough', so perhaps he knows someone
with ME.

I hope this helps you and I wish you well, so long as one takes action
there can only be results.

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Re: Going back to work - do I mention the ME?

by AMG on Sun 29 Oct 2006 22:11 GMT | Profile | Permanent Link

Hi - my advice, as someone in a similar situation is - tell employers on a
need-to-know basis. Approach it as you would any other disability - not a
big issue, but needs to be taken into account. You need to decide for
yourself exactly where your boundaries are first, i.e. when you need to rest
in the day, what kind of activities to avoid. Then you are clear what you
are looking for, and it may be that the only difference between you and
someone with no M.E. is that you work less hours so that you can go home
early. If that is the case, further down the process it would be wise to
tell them, a) because they might be kind and supportive! b) the legal
reasons they are obliged to treat you fairly, and make reasonable
adjustments, which they can't do if they don't know. But for the start,
drip the information in gently - don't walk in with a label that nobody
understands! (not even us!)

It does sound as though you aren't firing on as many cylinders as you would
like, so I'd start on as few hours as possible, if this is what you really
want to do. Don't forget to keep energy in reserve and NEVER push yourself.
Nothing is worth a relapse.

I personally wouldn't tell a commercial agency you have M.E, just tell them
exactly what you are looking for (location, hours) and stick to it. You
don't owe an agency anything, they'll get their money's worth. Try a
university or Council Temping scheme, they're usually more understanding and
generally better disability employers. This may even count in your favour.

Keep it up-beat, be confident about your skills and experience. Don't
forget at all times your health comes first!

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Re: Going back to work - do I mention the ME?

by AMG on Sun 29 Oct 2006 22:15 GMT | Profile | Permanent Link

Sorry about the rather belated response to your
posting. I just read it now and was struck by how
similar your illness was to mine in terms of length of
time and "blips" in recovery.

I started to feel a little better towards the end of
last year, and, despite having some really bad days,
decided to take the plunge and apply for work. I got
an interview at a local chemists for a part time post
(16 hours a week). On the day of the interview I was
so ill my mum had to collect me, practically drag me
out of bed and get me home again! This was one of the
times when the invisibility of ME worked in my favour
(along with a good bit of makeup!) and I got the job.
In response to your query, I did tell the interviewer
I had been ill, and that I only wanted to work half
days. I don't actually work in the same shop as her,
so have had to explain my situation as best I can to
my colleagues. They have been ok, but I'm not sure
they fully understand.

Starting the job in January was a bit of a leap of
faith, since, like you I was having some good days,
but some really bad days too. There have been days
when I have had to drag myself through in a complete
daze, but for the most part returning to work has been
just what i needed on the path to recovery. I have
found having a structure to my life once more to be
really helpful. I have had to be quite assertive, and
when (on many occasions) I have been asked to work a
full day, I have explained that I can do a few extra
hours, but not necessarily the full day.

Sorry, this email turns out to have been quite a
waffley one. But, what I wanted to say was go for it.
You won't know until you've tried, and you may find it
helps you in your recovery.

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Re: Going back to work - do I mention the ME?

by AMG on Sun 29 Oct 2006 22:17 GMT | Profile | Permanent Link

I was just wondering if you had considered doing some voluntary work initially, voluntary organisations are usually a bit more open minded, and it will allow you to check your energy levels. Also if you can show a prospective employer that you have been doing part time activity ok I'm sure this would be in your favour.

Employers and reasonable adjustments

I've only just joined AfME after being diagnosed with CFS (finally) in May of this year. I'm getting back on track having had it since 2004 (I have a history of Anaemia/Iron Deficiency since 1997 due to near-fatal Salmonella, it was assumed my fatigue was due to this until I had hospital tests during 05), but I hadn't bargained on the hurdles you have to jump as you start to recover. Work took me off down their Capability Procedure route at the same time as the diagnosis and I'm trying to get the CFS under control, so far so good, whilst trying to keep my job!

I'd love to hear about other people's experiences in the workplace and how they coped with employers thinking that reasonable adjustments will cure the condition? Also interested in hearing about 'creative and proactive' adjustments in the workplace, as per September's InterAction. So far I've asked them for a rest area, a footrest at my desk (for leg muscle fatigue) and reduced hours. They initially refused my rest area so I asked my GP to back me up and now have something in place, although they want to monitor it's use. It seems a bit of a shame that employers are not more helpful at times like these, and I work in the public sector where a greater level of so-called understanding is much publicised?

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Re: Employers and reasonable adjustments

by AMG on Sun 29 Oct 2006 21:56 GMT | Profile | Permanent Link

I'm not sure it will be too useful to you but I was in a similar situation to you about 12 years ago. If I quickly relate what happened to me it may or may not help you to weigh up your options more clearly.

I was diagnosed around 1992 and told my employers, an American oil company, that I would try to start working smart rather than working hard, as I had been doing, to see if that would alleviate the fatigue and the regular viral infections I contracted. The diagnosing doctor suggested that I should stop work altogether but I thought I could control the symptoms by easing back. As it turned out I wasn't smart enough to fully master the 'work smart' thing and I continued to work just as hard. I've learned that the conscientious and perfectionist traits are extremely common "failings" in ME people. Anyway I continued to work until I physically had to stop. I took 4 months off work and rested. In retrospect this turned out to be as useless as continuing to work. When I returned to work, the company, to their credit, organised a completely new job for me starting part time and building up to full time over a few months. This was so successful that they promoted me into an key managerial role after about a year. With hindsight I should have turned this down but with regular major redundancies I was afraid to. So I continued working at the higher more stressful level and within a year I ended up a good bit worse than I had been when I had to stop work the first time. During that time a lot of adjustments had been made. I had a bench that I could lie down on regularly and I stayed in digs close to work so that travelling was reduced. However eventually I became so bad that I was advised by the company doctor to stop work altogether, which I did. I have not worked since then and despite trying every therapy invented by man and beast over the last twelve years I have not recovered my health. Pacing and CBT are the only things that have helped.

I am not suggesting you stop work. My situation ie a private company, who responded really well to my illness and still helps me, is probably very different from the public sector. All I am saying is that in retrospect I wish I had taken the doctor's (a CFS consultant) advice in 1992. I would be skint now but hopefully with the 'pacing' would have been capable of recovering a lot more of my former health.

Hope this helps but somehow am not sure that it will.

Get-together in Hull / East Riding / NE Lincs

Hello, I'm 28, about 75% well and live in Hull. I'm wondering if anyone from my area/East Riding/Northeast Lincs/etc would be interested in a get-together for 25-40 year-olds if I organised one? Not to talk about ME especially but just to meet people and enjoy ourselves whilst understanding everyone's limits. Could be either in Hull or possibly somewhere else if there was the demand? Send me a message if you're interested, at cate@quilling.karoo.co.uk .

Hope to hear from you! Catie Allison.

being afraid of going back to the well world

Id love to contact people who are recovering as this is just the stage I am at!Having been severely affected for 3plus yrs,I had Reverse Therapy and am now much much better,though still needing to pace and still living with one foot in the well world as you say!

I still am not well enough to work and need to consider a career change from teaching,but fell quite afraid of going back into the well world again!For me there has been a certain safety in being so ill as there was just no question of me being able to do anything other than exist from day to day-so I identify immediately with the points you write.

not easy to balance

I've been "on the up" now for about 10 months, and whilst this is fantastic, I have come accross different problems than those encountered when ill and sometimes felt a bit lonely. What you wrote about living with one foot in the well

world and one foot in the ill world is exactly the same phrase that I have been using, and is sometimes not easy to balance.

a foot in both camps

I am very much one of those people with a foot in both camps. I had about 6 years of severe "house

bound " m.e and then a subsequent climb up to a more able way of life -altogether about 13 years. Would love to be able to help other people in some way. I have noticed how people who start to recover seem to say the same things.That there is so obviously a common pattern of trusting ones own instincts about what will help you and what maybe detrimental.

living with one foot in the well world and one foot in the ill world

Saw your letter in AfME readers bit. Think it is a great idea. I am one of

those living one foot in the well world and one foot in the ill world. I am
at the stage where I think I am well enough to get some sort of part time
job but having told an agency that I have ME but am sufficiently recovered
to work, I have heard nothing. Not really surprised. So is it better not
to mention it. Am a bit short of money and never was on benefits as husband
was earning enough and now he is out of work it is more than three years
since I last worked, so I can't claim. Also, now I feel I am probably too
well from the benefits people point of view! Am very grateful for that but
want to be that much more well. Human nature I guess. Want to get back on
that tennis court one day - have tried but not ready yet.

what am I going to do when I get well?

When you are on the edge of wellness, there is the social pressure to conform to what you used to do, and it's counter productive. One of my greatest worries is actually - what am I going to do when I get well? What then? Ridiculously, probably the most valuable thing I have learned about recovery from M.E. I only learned the other day - that when I am feeling "better" that is the time to rest, rest, rest - because at last the body is able to start healing itself, which it couldn't do properly when symptoms were flared up. That is healing time, not going back to work time. I just wish doctors knew this.

So please sign me up for the Wellies Network - I want to get well(ie) too!