5 things to say and not to say to a friend with M.E/CFS

I am now into my seventh year of having M.E/CFS and am beginning to face the reality that I am unlikely to recover before my daughter grows up. With the years spent predominantly within one room my invisibility and isolation from society deepens. Having a chronic illness is a very lonely place to be and I am lucky enough to be living within a family, imagine how alone I would be without them? In my experience most family and friends do their  best to ignore the  fact I have M.E in a way that they would be unlikely to ignore cancer if I were unfortunate  enough to have that. If they ever do mention my health what they say is often offensive, along  the lines of  'you really should try to get better/ do gardening/ pull yourself together' like recovery hasn't been my sole focus for the past 6 years!

I wanted to give a little advice to those of  you out there who may know one of the 250,000 people in the UK with this illness, who may not know what it is okay to do or say, in order to encourage you to break down the barriers between the internal world of being imprisoned by a chronic illness and the outside world. Here goes....

1. Don't assume you know how a person with M.E/CFS is feeling.

Most people assume the key issue is 'chronic tiredness' because of the unfortunate name the NHS has given our condition. Chronic tiredness is something you experience as a first time parent, and you can push through it, you have to for the first few years of parenthood in order to avoid having your children taken into care! (See I've still got a sense of humour, even after all these years) Not only does the type of tiredness we with M.E/CFS experience bear no resemblance to any tiredness ever encountered in an ordinary or even ill life - it feels cellular as if each molecule of your being is wading through treacle - you can not push through it, you can not ride the wave, you can not ignore it and do a little more, often because you simply can not physically make the energy you need but even when you feel you can push a little further there are DIRE CONSEQUENCES, so if you are not an idiot you learn not to outstrip your capacity even if you really, really want to.

2. Don't assume you know what symptoms your friend is experiencing. 

To be honest exhaustion is often the least of my worries, it is all the other symptoms that my body cycles through either because I have tried to do something vaguely enjoyable - such as  leave house-arrest for two hours and venture out for a coffee with my partner - or simply because that's what my body happens to be inflicting on me at the moment and I have no idea why, now, this minute.

3. Do ask your friend about their illness, about the symptoms they personally struggle with and what their life is like. 

Yes we all know how boring  other people's illness is, but simply ignoring it is not going to keep your friendship going for long. Would you just ignore or show no interest in what a friend was  experiencing if they had cancer, when they had to crawl back to bed after an hour, or you knew they had chemo, would you just roll up at their house and never mention it? Yes, I know some people will disappear completely from the scene, as with all illness, but if you do stick around would you ignore your friends cancer? I somehow doubt it. The thing is we have sympathy, empathy for people we know with cancer and one of the reasons for that is we are scared of getting it ourselves and that fear makes us think about what it would be like to have it, which immediately makes us more open and therefore a tiny bit more sensitive to what they must be going through. We don't imagine we will ever contract M.E/CFS, we never imagine what it is like to have that, until we wake up one day and ... 

People with M.E/CFS are as bored as anyone with the grinding, relentlessness of their illness but if you take the time to actually ask them how the illness operates for them and listen to the answer you will make that person feel like somebody actually cares about them and now has a sliver of insight into what they are experiencing, and this will make them feel less aloneand probably not need to keep trying to draw attention to their symptoms. In my experience when someone has taken the trouble to gain insight into what is actually going on for me (that has only happened with one person outside of my immediate family) I have found that person less draining to be with. Perhaps its because there isn't this constant mismatch between what is going on in the room, what is seen and shared, and what is going on in my body, what is invisible and ignored.

4. Do not tell someone with M.E/CFS they look well, or not so bad. How we look on the outside rarely reflects what is going on on the inside.

Someone may even appear alert but inside they may be feeling like they are slowly drowning in symptoms. So take the time to really notice how your friend seems, rather than making 'reassuring' comments. If you feel you are being crushed by symptoms being told 'yur looke good!' makes you feel worse, not better! Strangely enough there is nothing more reassuring for  me than when a person says you look awful, tired or simply picks up the cue that the end of my tether is being  reached energy/symptom wise and voices that observation. Once again it comes back to being seen, to being heard and to not feeling like you are invisible because no one mentions or appears to have noticed that your life does not resemble an ordinary life. 

5. Be aware that engaging with human beings is probably the most energy draining thing a person with M.E/CFS can do short of actually being daft enough to try to exercise.

Most of us are not antisocial recluses by nature, it is just that we have discovered something we never realised before getting ill and that is that talking, thinking and listening - processing all that information - is one of the most energy consuming things we can do. Yet most of us miss people, miss the life we once led, miss our old friendships, and lament the fact we can not make new friendships because we have so few opportunities to do so and so little to give. But just being aware of this fact, being tuned into your friend by doing the things I have already outlined, talking calmly and listening carefully when you are with your friend and not having unrealistic expectations of what they can manage socially, will keep your friendship going and minimise the loneliness and isolation of living with this condition. Trying to encourage an open and honest dialogue between you and your friend about when things are too much for them will  minimise how much their time with you drains their battery. Don't take it personally, it's not personal and please don't stop being in touch, texting, emailing, making arrangements to call  round because your friend does need your friendship and is probably feeling like she doesn't have much to offer in return. So if you value your friendship make sure she knows it and just take a few minutes to think  about the restrictions of her life and imagine how you would feel if your life and all  your relationships were restricted in the same way.

Doing all of the above will make you an even more valued friend.

T4 with four Iodine molecules (I) attached, Remove Top Right to convert to T3

The Science of Thyroid Function - Reverse T3 And All That Jazz

Despite being hypothyroid for 20 years and having a body that makes too little thyroxine, I had never really appreciated exactly how thyroxine works in the body. The thyroid gland makes T4 and T3. T4 has four iodine molecules attached, and is stored in the body ready to be converted to T3 by removing one of those iodine molecules. It is only T3 that works in the cells of the body to produce energy. I did not appreciate that every cell in my body needs thyroxine, more specifically needs T3. I had this general idea that the symptoms I had had 20 years ago which led to me being diagnosed as hypothyroid were produced because my body was having to work harder to make T4 and T3. I did not realise that in fact it is the reduced amount of T3 in the cells that leads to those cells not functioning properly.

This means in effect that if you have a severe shortage of T3 in your cells every part of your body can be affected, that means from your heart, to your liver, your brain, all your organs will struggle to function effectively without the thyroxine they need. It can also affect how your whole adrenal system works, if you don't have enough T3 your adrenal system will also struggle to function effectively, and if your adrenal system is struggling this can also affect how your body is able to use the thyroxine, how your body is able to take up T3 in the cells. When I realised just how fundamental the need for thyroxine and specifically T3 is in the body I began to see how a chronic lack of it would, if nothing else, have a massive impact on my M.E, even raising the possibility that perhaps some problem with my thyroid was at the root of all of my symptoms. Because if all my organs were in some way compromised by lack of T3 then all those organs would struggle to function. Perhaps this is why my heartbeats so slowly and blood has a tendency to pool in my feet, perhaps this is why my adrenals aren't functioning properly and I have a body that can not respond effectively to the slightest stress, perhaps this is why my liver is not processing sugars properly or my insulin is not working consistently, resulting in reactive hypoglycaemia and symptom of sugar crashing Perhaps this would explain why I could only go so far in gradually increasing my exercise before I would reach my limit and my recovery would progress no further.

But how could this be true? How could it be that my body had suddenly stopped being okay on the dose of thyroxine I was on and how could it be that my blood results did not indicate a lack of thyroxine?

Let's deal with the blood results first. When you have your blood tested to see how your thyroid is functioning you have to realise that the reference ranges used by the laboratory to indicate normal, are actually an average or median of all the results that that laboratory gets from the people it tests. Then you have to ask yourself what kind of people have thyroid function tests, perfectly healthy ones, or people who are tired, ill, or have chronic fatigue? Of course the proportion of people who have this test are ill in some way that is why they are being tested. My local laboratory sets its TSH range – TSH is a measure of how hard your body is working to produce thyroxine – at somewhere between 2 and 4, below 2 hyperthyroidism is a possibility and above 4 hypothyroidism is a possibility. However, there is a piece of research which actively recruited healthy individuals, with no known family histories of thyroid problems and tested their TSH levels. Guess what? The average for this group of people was not between 2 and 4 it was just under 1, demonstrating that in fact the optimal level for a healthy individual is to have a TSH level of around 1. If you are on thyroxine and your level comes in at just under 1 it is probable that your doctor would reduce your thyroxine in the belief that you are on so much it is suppressing your thyroid function.

The other part of the equation is how much free T4 and free T3 is in your blood, rarely do doctors test for this as a matter of course, but one can also assume that the levels being seen as normal as set by the laboratory for T4 and T3 are as distorted as the levels set by the laboratory for TSH. By this you can see that you could potentially get thyroid function results which are not optimal but which are considered within the normal range by a doctor. In addition to this, I was on a combination of T4 and T3, taking synthetic T3 is known to suppress your TSH levels, so my levels when tested were always around 0.01, which in itself could have masked what was going on in my body.

The second part of the equation is something called Reverse T3. (RT3) If you imagine four iodine atoms in each corner of the molecule of a molecule of T4, and that in order to convert this to T3 the body takes away one the top right hand side iodine atom, reverse T3 is where the body has taken away, for example, a iodine atom on the bottom right hand side, rendering the molecule unable to be used by the cells of the body to make energy. There is not a great deal of information and research on RT3, the body naturally makes a certain level of T4 into RT3, it is perhaps a checking system whereby the body can ensure that there is not too much active T3. But it is also known that the body produces more RT3 when it is stressed, physically or emotionally or starved, because at these times it is likely that it needs to preserve energy and function in a minimal way. It is possible to have your RT3 measured privately and there are people who have enormous levels of it in their bloodstream and one can only assume that this hinders the body in accessing the active T3. I can only consider that it is possible that the stress to my body caused by three major abdominal operations, not to mention a long history of eating disorders, has produced too much RT3 and thereby blocked my body's access to T3. It is also possible that with a suppressed TSH perhaps my body sensing enough T3 converted the T4 I was taking into reverse T3 in a disproportionate way. There is also the possibility that as a result of the stress to my body that my body no longer converts T4 as well as it used to, or other possibilities are that my body for some reason, again perhaps the stress, no longer finds synthetic T4 agrees with me, my body does not work well with it any more.

This is all very scientific, and admittedly a lot of hypothesis on my part, not to mention that not many endocrinologists let alone GPs have the faintest idea about RT3, and if they do, do not accept that there may be times when the body no longer works the way they understand it does. Because as with M.E there is very little research in the UK taking place in order to further understanding of these issues. However I have come across many, many people who were diagnosed with M.E only to find that when they took thyroxine, or changed to natural desiccated thyroxine (NDT), or even in extreme cases have taken only T3 in large enough amounts, that they have made a full recovery from their diagnosis of M.E.

It seems to me logical to deduct that if people have experienced a dramatic improvement in their health as a result of changing their thyroid medication that something complicated and little understood is going on with these people's thyroid function. However, a well-known endocrinologist has stated that his research shows there is no improvement in people's symptoms if they take NDT for example, and therefore if people do improve on NDT it is evidence that their condition is psychosomatic. It seems to me an outrageous manipulation of science to draw such a conclusion without any actual psychological or physiological evidence to back it up. To my mind the natural conclusion is not that the people who get better must to all intents and purposes be mad, but that there is something unknown, undiscovered and misunderstood about these people's health conditions.

I have tried to explain to you why you can have a so called normal thyroid function test and yet have a thyroid system that is not functioning normally, and also how reverse T3 may be an invisible influence on a persons thyroid function, but I am not claiming that all M.E, or even my M.E, is caused by abnormal thyroid function. In my next post I will tell you how I have been trying to address the possibility that my thyroid is at the root of my condition.

Is This The Key to recovering from my M.E?

Unfortunately I haven't been absent from my blog because I made a miraculous recovery! I have had a couple of setbacks. An old friend of mine, who'd had chronic fatigue had found Chinese herbs very helpful in her recovery so, desperate as ever, I thought it's one of the few things I haven't tried. £100 or so lighter I found myself getting iller, slipping back, and realised it was the herbs. So disappointed as ever I knocked that one on the head and went back to what I had been doing before. By about June this year I was back where I had been before the herbs, able to tolerate being upright for about 1 to 2 hours, needing to rest afterwards for one and half hours, being a bit more human when upright, my symptoms were quite calm, mainly the exhaustion and my adrenaline keeping me pinned to my bed. However my new GP did something that set me back about three years.

Now I have been diagnosed hypothyroid since 1994. Over the years like a lot of hypothyroid patients my need for thyroxine had increased and by the time I hit the m.e wall I was on 175 MCG of thyroxine and 20 MCG of something called liothyronine sodium. I had had a very supportive GP before I moved to Wales and she had put me on liothyronine sodium at my request. The thyroid gland is a very complex part of the body that produces thyroxine otherwise known as T4 and liothyronine otherwise known as T3 along with T2 and T1, and who knows what else! Now the T3 part of that is the active bio-available form that your body is meant to turn T4 into in order to use the thyroxine you are given by the doctor. My new GP in Wales looked at my blood test results and in her infinite wisdom, despite my arguments, despite what an endocrinologist in England had said, despite the fact that changes to thyroid medicine are usually ramped up and down in small steps, she decided to take away all of my T3, and cut my T4 down to only 100 MCG. In effect she had more than halved my dose overnight.

Now all hypothyroid patients don't like their medication being reduced because we never feel like we've ever gone back to the person we were before we were diagnosed, however having M.E I was particularly concerned about this drastic change. Now I expected a re-occurrence of the symptoms I had had when first diagnosed in 1994, basically I thought I'd get fatter, balder, have drier skin and obviously be more tired. I did not for one minute expect what happened.

After a couple of weeks on my new dose I felt an improvement, my adrenaline reduced I was managing to do more, however that only lasted a week. After that week I began to go drastically downhill, symptoms I had not seen for at least a year came back full force, in fact after about six weeks I was almost as ill as I had been when I first hit the wall. Desperate to get my dose increased I went onto the Health Unlocked website to get some advice from other sufferers of hypothyroidism about how to challenge my GP . Many people told me I did not have M.E just badly treated hypothyroidism. To be honest with you I thought they were evangelical nutters, who did not accept the existence of M.E. why did I think this? Because I knew that relatively speaking when I first got M.E I was on high-dose of thyroxine, and I knew that the array of symptoms my M.E produced far exceeded anything I had ever heard of someone suffering when they have an underactive thyroid, lastly, I knew that M.E does exist and is not caused by hypothyroidism because my partner had had M.E for 16 years and had recovered without taking any thyroxine.

Despite my conviction that my M.E was not caused by hypothyroidism I had to admit as my symptoms increased I struggled to understand how this drop in medication could be reproducing my experience of the first year or so of having ME. Symptoms I had even forgotten about returned, so for example my brain fog became so bad I could barely speak; I was freezing cold then boiling hot; my headaches increased and I felt nauseous; my eyes were so tired and itchy it felt like I'd been at an all night party and hadn't been to bed for 24 hours; and my sugar crashing, thrumming and tingling went through the roof. I became increasingly curious about the endocrine system, in particular the thyroid gland and its role in the production of energy in every cell of the human body. The more I opened my mind, the more I read, the more I discovered that people with hypothyroidism shared many of my symptoms, the more convinced I became that even if my hypothyroidism was not the total cause of my M.E I would never make a recovery unless I addressed what was staring me in the face: that either my body could no longer convert T4 to the active T3, or else something was blocking the take up of T3 by the cells of my body. It could not be a coincidence that all my M.E symptoms went through the roof when my medication had been so severely cut, there had to be some sort of correlation!

In my next post I will elaborate on exactly what I have discovered about the relationship between my M.E and hypothyroidism.

Stringing the days together

When I started on my rigid up and down schedule and walking in water for 5 mins three time a week about  a year ago I felt sick as a dog most of the time, exhausted, adrenalin pressing on my chest, the drive to get flat dominating my time upright and generally unable to function. I could see no cause and effect in how I was feeling and be unable to predict bad and worse days. I would spend the time I had to be up longing for it to pass so I could crawl back to bed and, whilst loving my daughter, simply wishing she, and all other human beings who made any demands on me, were elsewhere! So where am I a year on?

I remember the South African physio who has been advising me through the past year told me that what would hopefully happen is I would get a better day, then bad days, then another better day and slowly the better days would get closer together and all going well eventually more and more better days would get strung together like a necklace. It was very difficult to believe this and it felt very very far away at the time. I have struggled sometimes to hold onto hope and struggled sometimes to stick to my schedule – remember me going up the Mountain in a distressed moment last summer? But now I feel a year has made a big difference, it is easier to look back over the past twelve months and see the progress I have made. And I know it isn’t just time, I know this progress is a result of the disciplined approach I have taken to my illness and to the healing effect of getting in that water 3 times a week regardless of how I feel.

20 minutes in the Pool Now

Last week I got to 20 minutes in the pool. I swim lengths for 3 mins and then walk in water for 2 mins. I can drive myself to the pool fine, I can shower and dress without feeling like I am close to dying. I can swim a length of breast stroke and a length and half scullying on my back before putting my feet back down again for 2 mins. I wear my heart monitor and not only stick to my time to the second regardless of how good or bad I feel, but I also keep an eye on my heart rate and if it is going silly as it sometimes does for no reason, like hitting 130 bpm rather than the average 106 when I swim, I swim very very slowly and glide as much as possible.

Walking

A few months ago I also started very slowly to walk on the days I am not swimming. I employed the technique used for swimming, ramping up the time once I had stabilised for 3-4 weeks. So in this way I started by going to the first gate and back, then the field beyond the gate and back, then the next gate and back and now I can get over that gate and walk a few hundred yards out on the mountain. It is wonderful!

Extending my rigid schedule

And last week I re-jiggled my schedule so that now I am more or less up for 1.5 hrs and down for 1.5 hrs so I’m not staying in bed for 2 hrs at a time in the afternoon.

Since reaching 20 mins in the pool and spending less time in bed I have taken another leap forward in how well I feel when up. For the past few weeks I have had NO SUGAR CRASHING and less and less adrenalin. These are the last two symptoms, apart from the inevitable ‘tiredness’ , that I have been getting for the past few months. When I am up I can cook and teach my daughter,  do my self -employed work and act quite like a normal person to the outsider, so long as I go back to bed when I’m meant to. I even coped with visitors the other day, cooking dinner for them and talking to them - the most exhausting thing I find -  but of course after 1.5 hrs I went to bed, then got up and saw them after my stint in bed.

This all indicates to me the importance of keeping the pressure on pushing just a little at the edges of what I can do, so long as I have been stable for a few weeks at that point. Being stable doesn’t mean I feel brilliant all the time, doesn’t mean  I am symptom free before moving on, it just means I haven’t gone crashing backwards before I push at the edges once more. The additional movement and exercise must be helping my body function better so having a positive knock on effect and I have been using Gupta to chase away any fearful or negative thoughts about potential recovery or focusing on symptoms.

Sometimes a year feels like a very long time to have worked so hard and have come a small way, sometimes it feels I’ve come miles and miles and can truly believe that if I keep this discipline up I will make a full recovery before my daughter’s childhood vanishes before my eyes!

Any questions feel free to comment or share what’s been helping you recently!

ARE YOU an M.E US and THEM-ER???

Are you an M.E us and them-er?

Some people seem to take the attitude that there is a difference between ME and CFS, and that if someone has ME they can NEVER recover and if they have CFS it is not the same as ME. People also have the idea that if someone does recover, then whatever their symptoms whilst ill, they can’t have had ME, their illness must be something different BECAUSE: people with ME can NEVER get better. 

I think this is a load of old twaddle!

Sometimes this involves people who identify as ME sufferers back stabbing others and trying to argue against them. I myself have had nasty comments from the us and them-ers about the use  of CFS as part of my twitter tag, the argument being that if I don’t  agree with the term CFS I shouldn’t use it. I do loathe the term CFS as it appears to identify ‘chronic fatigue’ as the predominant symptom, demonstrating no insight into the particular and peculiar nature of the exhaustion experienced in ME,  nor in anyway acknowledging the wide array of  other symptoms that - for me personally - have become the nemesis that dominates my disability. However, I recognise that this is the term the medical profession use in the UK and that as such many people will only have this term to identify their illness with. I used it on twitter in order to ensure I was communicating with as many sufferers as possible and not just the ones who use the term ME.

The thing I hate the most about all this is that to use your precious energy criticising other ill people on the grounds that YOU have the CORRECT definition of the illness and everybody else is WRONG is not only counterproductive and spurious but a really really good way to distract and detract from working out what is going on with this wretched illness and how to recover from it. Oh yeah but that’s because I forget it is IMPOSSIBLE to recover from ME, because, catch twenty two, if you do you obviously never had it! Well what a load of old tosh!

Yes there are times when I talk to people who have recovered, or people who currently identify as having MECFS and I do wonder if they have had or have the same thing as me. How can they own and ride a horse regularly if  it’s taken me 11 months to build up from 5 minutes in a pool to 15 minutes? How can people go out and about so much? How can they have traveled to India whilst saying they still have MECFS??? On bad days I think "HOW? I want what you have because you can do so much more!!!" But then I think about all the ignorant people who see me going to the swimming pool 3 times a week and haven’t  a clue that I am ill, or the friends who just don’t ask or understand if I try to explain how I can sit and talk to them for 15 minutes like a normal person, but as I talk the poison is rising and I will pay for it later or tomorrow!

I do personally believe that you have to be more than chronically tired to have ME, you have to have an array of additional neurological symptoms, but I do believe people get better – I live with one of them – and I do believe that as recovery progresses we can lose the other symptoms and be predominantly left with tiredness, but more than anything I do believe that judging and bitching about other people is a huge waste of precious energy, and the best way to ensure you NEVER recover! 

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