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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The Glass Cage

You cannot see the walls of my glass cage
You think: She walks, she talks, what can the problem be?
You cannot see the energy that drains from every cell just to sit and speak
The rope strung tight that every sound sets jangling
The Tsunami of poison rising ready to sweep

The closing of the window

You cannot see the umbilical cord that tethers me to my bed
Nor how like an embryo I am flayed and unable to survive for long in the outside world

You cannot see the Death’s-head moth that hovers over me
Fluttering its wings against my breast
Before coming to settle its massive furry head upon my chest

I cannot see electrons circling a nucleus
I cannot see the thoughts forming in your head
I have no evidence of your feelings beyond your words
No one yet has precisely defined what the difference is between alive and dead

Because of that are all these things mere phantasies?

I hear the footsteps of my daughter
Her laughter echoes like the ghost of a family I once lived amongst

Gone is my agency
Gone my lived-full-life

I wait and wait for the ink licked fingers that press me down to one day let me go

Pain and the Brain - what can we learn to help ME recovery?

In Lorimer Mosely's book 'Painful Yarns' he demonstrates his experiences of people's pain and how the brain relays pain to the body. He is an Australian physio therapist who has specialised in back pain. His many stories are entertaining and amazing, but the key information they demonstrate is that pain is something the brain uses to tell a person there is something wrong, it is a construct of the brain. People can no longer have something wrong with them - for example an amputated limb - but their brain can still be telling their bodies to feel pain. Or conversely people may have something wrong with them, but because of the context or their personality their brain doesn't tell their bodies to feel pain - for example a man with a nail through his foot walking two miles barefoot to the hospital and being absolutely fine, then banging his knee on a bench and screaming out in agony! One example from his book.

Mosely is not saying these people don't feel pain, he's not saying they are not in pain, what he's doing is holding up a mirror to the fact that pain is something in essence created by the brain, and that the brain can also choose or be taught not to tell us about that pain. This is very different from saying a person with an amputated leg doesn't feel pain it is in their head. It isn't in their head, their brains are creating that pain in the same way as your brain will create pain if you stick a knife in your leg, both are real, both are valid. But if people's brains can also, for whatever reason, not inform someone they are in pain what can we learn from that, and how can that information be used to help people who experience chronic rather than acute pain?

How could this knowledge be applied to ME? Could it be something has switched our brains on to pain, symptoms etc and is it possible to switch that information off? I don't have the answer to that last one, I don't think there is a magic bullet, but I do think it's possible that by unavoidably being aware of our illnesses we are reinforcing the message from our brain that there is something wrong and we need to experience it. Again, like Mosely, this is not in anyway the same as saying it is in our minds, it is as real as putting the knife in your leg, it's just that perhaps we don't actually need to be told we have a knife in our leg anymore, perhaps we need to find a way of convincing our brains to tell us different things. Perhaps this is how we can get stuck and need help to get unstuck. We are ill, it is real, but how we think can affect how we experience our illness and we need to find the most useful ways to think to aid recovery.

This fits with something I heard on Radio 4 recently about surgery to electrically stimulate the brain to help various conditions, including enduring untreatable depression and Parkinsons. One man has chronic and constant pain in his arm, so bad that he has considered chopping his own arm off, only the doctor told him it wouldn't make any difference, the pain is not in his arm, it would still be there because the pain is a message to the brain that has gone wrong. By stimulating the right part of the brain they can change his experience of this pain. It's not that the pain isn't real, it's not that the doctors don't believe his experience - they do enough to do an expensive operation - it's that his brain or the neural pathways are stuck on the PAIN ON mode and by stimulating the brain they can either turn these off, or as one patient put it 'It's not that the pain has gone, it's that the pain doesn't matter anymore!'

All Food for Thought.

How to use walking in water to recover from ME

So finally, here is how to use water to help recover. My aunt had severe ME, and I think had to be carried into the water at the beginning, but she has put water down as the biggest contributor to her amazing recovery in only 2 years!!! The shortest I have ever heard of. I have worked via e-mail with her physio in South Africa and this is how she advised me:

I started by being in the learner pool (which is so much warmer) 3 times a week for 5 minutes only. It is important to have a day between paddles and not to swim. I simply walk I in the water up to shoulder height using my arms to part the water ahead of me. Like I said before when I first started it took a lot out of me, I had to be driven there, I felt very shivery when I got out and getting dressed felt like a huge mountain to climb. I think my aunt was so ill she was only in the water for 2 mins to begin with. So I did 5 mins Mon, Weds and Fri however ill I felt and after about four weeks I felt stable at that amount of time so then I increased it by only 2 minutes more. You do this every time, keep at the new time, keep being steady with it, allow yourself the day off to recover, keep to your fixed schedule the rest of the time and when you feel you are stabilising at that amount of time up it by 2 minutes. It is important not to push it, not to try and ramp it up too quickly, and if something goes wrong, you get an infection or over do it like me, then rein it back a bit by 2 or 4 mins depending on how ill you are. I have had to drop back down three times now - which is always very disappointing - but each time I have found it takes less time to get back to where I was.

When I got to 11 mins for the first time I suddenly realised I was feeling very much more robust. Unfortunately I got an infection and was very sad to drop back to 7 mins after having a couple of weeks off, but I got back to 11 mins in about a month, rather than the two it had taken me to get there. The exciting bit is finally getting to 15minutes as then you can start to swim a little. You swim for 2 mins, then walk for 3, swim for 2, walk for 3, swim for 2 and walk for 3.

It all sounds like graded exercise, but I have to say it is more than that. As I have said I wear a heart monitor in the water and as soon as I get in the water my heart rate starts to drop. Getting in the water feels really healing there is something lovely about it even when I was struggling either side of the getting in the pool. But recently where I pushed myself up the silly mountain and had just reached 15 mins and had to drop back to 13 mins, getting in the water just calms everything down, all the weird body symptoms, the autonomic nervous system stuff just seems to be soothed by being in the water. And this time it has only taken me 2 weeks to feel stable enough to get back to 15 mins and 2 min swims. When I think back to last December and how much better I am, how much more robust, I feel really hopeful that given another year or so I will get back on my feet properly. It's important to be realistic and take it steady. My aunt thinks the most important thing is to make steady progress and avoid crashes as they damage the body further. It is of course all about mental toughness - if only those idiots who think it's all in our heads would realise how tough you have to be mentally to live with this awful condition!

Where I lived before was too far from a pool for me to use even though my aunt told me it was the best thing I could do and I couldn't quite believe her, but here I am lucky to be a 10 min drive away and have a leisure centre where I have paid £150 for a years unlimited swimming, so I'm only paying £1 a swim in essence. It is the best bit of money I have chucked at this illness and believe me from mitochondria cell function tests to injecting myself with B12 and magnesium its the best £150 I have spent.

I urge anyone with ME, however ill, to try it. To beg someone to take you and stick to a tight schedule and try it. I know my aunt isn't the only person who has recovered this way, although she is the fastest the physio has known. If you want any advice let me know, and of course if you sign up to e-mail reminders you will automatically keep up with how my recovery is going!

So Cross with myself!!

As anyone who cares will have noticed I have not managed to post about how to do water therapy yet. Why? Because I have shot myself in the foot so to speak and have been too ill to write much until today.

Last Friday I was upset about something and it all just served to emphasise how powerless and trapped I feel by my illness. I got myself in such a state about it and how I can't do anything to change this, I can't just apply my mind and my will power and BOOM it's all gone that I wanted to do something that made me feel less trapped and powerless. So what did this silly cow do? Well, we live two thirds of the way up a small Welsh mountain, so I in my hysteria dragged myself up the last third of it! I had to stop every hundred yards or so to sit down and rest and cry and the dog kept giving me concerned looks, but with no one else to talk any sense into me I just kept going. I got to the top eventually and I lay on the ground and looked at the clouds and the sky and began to feel a bit better. After a while I even managed to stand up and walk slowly back down feeling much better than I had on my ascent. I even managed to kid myself it was okay, there I could do it. Ha! Ha! Ha!

Well if I haven't learnt before I have now. Just feel like I've been unplugged again, my heart's been going random, sugar crashing again and generally feeling really rotten. The problem is even I had stopped appreciating how much progress I'd made. I felt like because I was doing so well when up and about and not feeling rotten that others who don't know me so well would think, 'what's her problem, see she walks, she talks'. I let this get to me, I let my own imaginings get to me, I forgot to remember that the only reason I was so good at walking and talking was because I had worked so hard at sticking to my schedule and building up my water therapy time. Well I will remember next time, however distressed and angry I am at living in this glass cage, I will appreciate that the walls had extended a little further, how easily they can fall back in on me.

This post is not about me moaning about how I feel, I want it to serve a purpose for others. I felt sharing this foolishness on my part may help others not make the same mistake.

Lets see how long it takes to gain back my ground, I feel I have gone back several months, it will be interesting to see if it takes less time than that to stabilise again and get back to where I was a week ago. Wish me luck.

I will blog about water next, soon. If you want to know when I've blogged next please do sign up for e-mail reminders. That's all your e-mail will be used for, nothing else.