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I am very late in blogging about my last GP appointment, as things have been very busy here and I have just not had chance. It was months ago but I do want to just say that she was excellent again and confirmed to me that even little gentle stretches that are not held long are beneficial and to just give it a try.

I have been doing these exercises (well, 7 or 8 out of the ten, as a couple feel wrong and the other I can only do sometimes due to my shoulders seeming to dislocate a bit) every day for weeks now and I am feeling that they are certainly getting easier. I can hold them for a bit longer and can do more than I could at the start. I think there is a looser feeling, though I am still getting pain in this area. It has been painful for many years so I am not going to get rid of the issue any time soon! I think the fact that the area feels good afterwards, even if it builds tension back up pretty quickly, is a start in the right direction. It feels like it increases blood flow.

Giles explains how to do the exercises on the video so I won’t explain them. I tend to do them in the morning. If the area feels very stiff when I wake up, as it often can, I put a heated wheat bag around my neck for a while before I do the stretches to make sure the muscles are warm and ready. I stretch while being aware of my breathing – stretching on the out breath. I don’t do a full stretch, only feel the first small pull, and go a tiny bit further. I have found that any holding of the position leads to increased pain so if I start at the full stretch (before pain) I cannot hold it long as it becomes uncomfortable. I just find a mid-point so that I can hold it for a little bit longer. In areas the seem to become sore very quickly, I just do several very gentle stretches in succession.

I had terrible headaches when I started these stretches, but this was due to a medication increase. It did however stop me from doing the exercises some days and I stopped for a week or so to test if they were contributing to the head pain. There did not seem any link so I am now more confident and do them every morning. My headaches have improved.

Now that I have seen some benefit from this area I would like to expand my stretches to include other areas of the body. As I said in my last post, I have various sheets with diagrams of exercises given to me over the years by physiotherapists. I just need to find which ones will be most useful to spend my energy on in terms of being useful in pain/tension relief and take it really really gently so as not to flare up my pain. I find that I can injure myself incredibly easily. I get days of pain from very simple things, like leaning over to cuddle someone for a couple of minutes, or holding a shopping basket on my lap when in my wheelchair, even when not really supporting it, just holding my arm in that position… Life feels very hectic at the moment, so I won’t be starting any new exercises just yet.

I do believe there are serious problems in muscle function that are unrelated to underuse of muscles due to inactivity in people with ME. I am just trying to keep things moving and maintain the function that I have rather than necessarily build myself up. We will see how it goes. I just want to minimise the long-term impact of living like this if I can, in terms of secondary problems such as osteoporosis and loss of core strength, which is already a problem for me; which could make things harder than with just having ME/POTS etc. in future.

I have wondered about contacting the physiotherapist from the local CFS service to get help and advice with this, but I have not found them very useful in the past. I wonder if they would do a full assessment of me? Something to think about for next year. In my much more recent POTS specialist appointment she suggested seeing a physio, in relation to my mobility getting worse (I was saying I could not go out without my wheelchair these days and did not think I had dramatically improved since seeing her (though some acute symtoms have improved), particularly in relation to leaving the house/stamina). She did not ask why my mobility was worse or suggest exercises specifically for helping with POTS symptoms. When I asked her a couple of years ago about leg exercises (meaning very gentle movement) she said not to as it was too early… I am sure there must be something I can do, but I am not sure the CFS physio will be very responsive to my needs as he overestimated what I could do when I saw him before, and I am worse now… we shall see. I think an in-depth phone call will be in order before I waste energy going down there for an appointment.

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I had a really great appointment with my GP last week. I have only been seeing her for a short while so we are still getting to know each other, and it was great to feel that my hunch that she is really great seems to be ringing true.

She spent a long time with me, and she does not rush me when I am trying to explain things which really helps me to concentrate and not forget important things, as well as it being less exhausting. She really listens and her response to things I suggest is usually positive, such as “yes, that is certainly something we can try” or “I will speak to a colleague/look that up and get back to you”. It really is a breath of fresh air after my last GP surgery.

This time was really a drug review and a review of symptoms to find what combinations might work best. I have come away with plans to make several changes in my own time, one at a time and to experiment with what works best for me. She really treats me like and intelligent adult and is not patronising at all. It is so great.

(Has anyone tried Clonazepam and do you take it in the day for muscle tension/pain or sensory overload/neurological symptoms? I have started taking it at night and sleep better but my symptoms remain…)

I also asked her about stretching and gentle exercise to maintain what function I have over the long-term. This was also related to the risk of osteoporosis of being indoors so much and not being physically active. She said that any movement is better than none, however small. I have been told before that stretching is pointless unless you can hold it for 20 seconds, and that doing exercises is also pointless unless you keep increasing the amount you do (like graded exercise therapy). My GP says she will ask a physio friend of hers about the best way to stretch very weak and trembly muscles, and how to build strength gently. She said I won’t be able to tell any difference for a long time as things will be so slow, which is a good attitude I think, rather than the pressured approach of people I have met before. I am willing to give it a try. I told her that I have a heart rate monitor and would wear it to be sure I was not stressing my body too much, and in order to keep my heart rate low I will have to do most of it lying down. She said that was excellent. I have dug out the exercise sheets given to me in the past by physios and the CFS management team, which I failed to do regularly before as the approach was not tailored to my severity. I just need to work out what I can actually do and also which things it is most important to focus my energy on, as I won’t be able to do anything on days where I am in recovery from doing something, or having a flare up: I need to choose wisely which stretches/movements will have most all-round benefit. She did say that even stretching would probably cause increased pain initially but not to worry about it if being very gentle. I hope that longer term I can reduce my pain levels through being a bit stronger and my muscles being less tense. I do think that there are various causes for muscle problems in ME and that it is just not possible to exercise all the issues away, especially nerve related issues. I can only see how my body reacts. I don’t think anyone should try to exercise unless they feel up to it, and I certainly will only be doing a little bit during my best time of day and on better days… I use the word “exercise” very loosely!

It’s worth a try, even though there are other things I would rather be doing with my time and energy! I will be starting with just a few minutes so will just have to discipline myself… again. Maybe some stretching then a treat!

I have had a pretty good summer! As I said in my last post, I had a great visit from a friend. I then had another friend come for a week and although I felt quite awful at times and had lots of sensitivity to noise, light and sensory overload as well as other things, she is the kind of friend who made the experience more pleasant. She just kept me company and we still had fun. It is hard to be around people when symptoms are severe so I was so grateful to have someone so chilled out and who knows me so well to be here with me. After that I had a few days to gather my self, my strength and my essential belongings before heading up to Scotland for a week. I was really surprised that although the travel was hard (and I slept literally the whole day after we got there) I managed to go out briefly three times during our stay and really enjoyed the things we did and saw. After that we again had a few days break before my partner went away with work, and my mum came up to help me cope with my daily needs and keep me company. We had a good time, and it felt quite busy despite only going out to a doctor’s appointment one day and a quick trip to see the sea and sit in a cafe another day. That was last week and this week we have the builders in – they may still be here next week actually. So it has been really busy!

I was a bit daunted by this summer before it happened. I worried about how I would feel, whether I would be able to enjoy things or if I would feel too bad to make the most of things that were happening and feel I was missing out. I have been pleasantly surprised by what I have done and how I have recovered quite quickly from each thing. I have been very careful, of course, but think my post-exertional malaise is not as severe as it used to be, particularly looking back to last year. I do get a flare up of symptoms, more pain and neurological symptoms rather than fatigue, per se. The sleeping all day the day after travelling was really unusual for these days, though so was such a long journey. It took three hours.

So here I am back at home and contemplating what I want to focus on over the next few months. Some things have come out of the GP appointment which will take some time and focus. I will talk about them in another post. It has been interesting to be without a computer, or accessing it less over the last couple of months. I really want to keep my blog going and interact with my online friends, but I also want to be online less and do more creative things. I did not really miss the extra internet hours and think I need to set some boundaries for myself so that I am only online at certain times of day and for short periods. I doubt I will miss out on much and it will focus my attention to the important stuff.

I really want to actually DO more creative stuff rather than just think about it and I need to make some space. The health stuff is going to take some time each day, so I need to make a plan! I would love to go with the flow more, as I expect I have expressed in previous posts, but with such limited functional time each day it is really hard to do that. I also find it really hard to remember what I need to do, so unless I have a plan I use my energy on non-essentials and forget the important stuff. Not good and does not give any sense of achievement. I have a new creative project with a friend so I need to make time and space for that. I am quite excited about it!

I subscribe to Sustainably Creative, by Michael Nobbs who is an artist living with ME. He is trying to earn a living through creative means in a way that fits around his energy issues. He has helped me to think about how I can fit in more creativity and work out what is important for me to focus on. He sends out regular digital postcards, an illustrated newsletter and daily podcasts which I really enjoy. This month new members get a free copy of his latest book! (He has produced others too). Whilst I do very little and could not contemplate trying to earn money from creativity right now, it is really good for me to do little bits and bobs and feel some sense of identity as an artist, not just as an ill person. While the latter wins out most days, the creativity and ideas are always there bubbling beneath the surface, even if I am not doing anything about them. It is good to see how others are trying to navigate these issues.

So, while I am back to the old routines in many ways, I hope to shake up a few and make some small changes, hopefully for the better.

Well, hello again, this is a long overdue update but much will have been forgotten as so much time has passed…

I have been to see the POTS specialist again who changed the dosage of both drugs I am on, but the second one did not seem to agree with me so I have reverted to the original dosage for now and might try again when I am not so busy and can tell perhaps more easily if it is really the drug or just that I am not doing so well for other reasons… I don’t want to dismiss it too readily as I know the options are limited and the lower dose has really helped. Maybe less is more, but my concern is that if this dose is the best for me with this drug, where do I go from here? Can a third drug be added to the mix (the more drugs, the more chance of interactions and negative effects) or do I have to forego the benefits of this one in order to see if something else suits me better? Tricky.

The weekend before last a friend came to visit, and I had a really lovely and relaxed weekend with her. I felt more able to chat and interact than I expected as had had a bad lead up, so it was good. We even did some creative stuff together! I have had over a week to recuperate and tomorrow another friend is coming for a week! Soon after that we are going away to Edinburgh for a week, so the rest of the month is very busy. All with fun things, so I hope I will be up to enjoying them.

I have been waking up really early recently, and sleeping less hours in total due to this. In general I am still functional as I was but am having a lot of symptoms/pain generally, which feels a bit strange. It may just be that I feel I am functional because I am not really trying to do anything big and my activity is limited to the mornings. By evening I feel pretty bad, despite my afternoon nap and I am going to bed earlier and earlier, though not getting to sleep any earlier in general. This early waking may just be the effect of summer or a new phase.

I do need to go to the GP and talk about my pain issues, but that won’t happen until September now. I had a bit of a scare when I forgot my Gabapentin one night, but did not realise I had missed the dose. My nerve pain was terrible and I barely slept. It seems to be in new places and felt worse than I remembered. There was no position to lie in without triggering it, whereas I used to be able to lie on my back with my legs up. I was so relieved when I discovered that I had forgotten to take my tablets and that I did not need to rush to the GP to find something new to help me. I am finding the drug less effective than it was and I wish there was something that would help with the nerve pain as well as the other types. I am not living in constantly bad pain, but certainly constant discomfort and there are periods of the day that are worse than others. It is good to know how much Gabapentin is working, even if it is not perfect.

I have not felt able to write blog posts, nor read many blogs by other people either, which I do miss. I like to keep up with how people are and what is going on but it just feels like there is not enough time/energy available for it all. My best hours in the morning can disappear very quickly doing essentials. I am going to have an internet break during this coming visit and also when away. I am spending a lot of time on facebook (as I can access it on my phone) which I get a lot from as it is my social life, and I don’t want to lose touch with everyone but I feel I need a bit of a break, especially from the more political stuff and news of Wessley that seems unavoidable recently. I would like to see what space a break will open up in my life, and seeing as I will be doing fun/sociable things in real life it seems a good time to try.

Speaking of Wessley, I wrote to The Times newspaper in response to an article they wrote about him and the death threats he has been getting. This is one of several media articles covering this story over the past week and I finally had enough and felt I had to do something in response. I won’t dignify them with a link, suffice to say they are very one-sided and another story about ME that does not address any of the really important issues, instead just focussing on the actions of a very small number of people with ME in order to undermine us and the validity of our voices. The reasons for these threats were not represented and the article itself admitted they were very few in number. I don’t know if my letter will be published, but I hope they do publish some decent responses as I know of other people who have written in.

Oh, I nearly forgot! I must mention the new International Consensus Criteria, published in the Journal of Internal Medicine. It gives a very clear definition of ME, as opposed to CFS. I really hope it will be adopted and used by doctors around the world and in research to move things along more swiftly.

I have just read The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. I really enjoyed it and recommend it to people with ME who sometimes find reading difficult – it is short, simply written and in small chapters. It is really lovely and has nice illustrations too, even in the Kindle version.

I have had a few nice trips to the beach over the last few months. It has been really nice to get out a bit this summer. I saw some great waves!

I will stop here, though I am sure there is much more I could say. Will be back in the Autumn, no doubt. All the best til then to my friends.

*I just found this in my Drafts folder, written in November 2009! Might as well post it now. I decided not to watch the film after writing this, as the reviews were SO bad.*

I have just finished reading The Time Traveller’s Wife by Audrey Niffenegger. I have read it before but I recently decided to read it again, partly because I am sending it to a friend and wanted to refresh my memory of it, partly because I loved it so much but my memory of it was getting hazy and the film has been made and before I rent the dvd I wanted to make the book firm in my mind to protect it from being ruined by seeing the film (the books are always better than the films, eh? But the film version can erase our memories of the book). Also I was listening to the BBC Ouch! podcast and they mentioned how it is basically a book about living with disability. Although I had got that the first time, I have been thinking about disability a lot more since I first read it and wanted to read it with that in mind…

Well, even though I had read it before it did not dilute the enjoyment, awe or emotional response this time around. I love this book!

I am not going to talk about it and spoil it for people who have not read it yet (including the friend I have promised it to, who will read this) but I would like to say that it deals with issues of living in a differently-abled body which behaves in unpredictable and unconventional ways (er, time travelling! As Ouch! said, it makes you wonder what will the disabilities of the future be?) and this is presented as a genetic condition. The book focusses on him living with this condition, trying to control his body, trying to be cured, effects on reproduction and relationships.

I really liked the way that his wife’s experience was so sensitively written. As anyone living with/caring for someone with an impairment, she experiences the compromises she has to make by association, how almost everything in their shared life is dominated by his condition, how she also has a different relationship to time and misses out on a lot of normal life experiences due to being in that relationship. Time is experienced differently by them both, not just because they are affected by time travel, but also due to the limitations brought upon them by his medical condition: living with disability. They both live for the good bits even if they are still compromised and always affected by it. There is a sense for him of not being entirely present in the present and feeling he is missing out on life, by thinking about other alternate times. This is something that I can relate to as someone with chronic illness who occasionally wastes time thinking about what I could be doing if I was better, rather than making the most of and appreciating what I am doing/can do now.

More than this, the universal themes of aging, embodiment, death, love, grief and loss are so movingly written I defy anyone not to identify with something in this book. Also a major theme is waiting. Waiting for better times, waiting for love, waiting for things to make sense. Who isn’t waiting for something?

I have just finished ten days on a sugar-free diet.

I originally started the diet to see if I would experience any obvious “die-off” symptoms, which would indicate that I had an overgrowth of Candida Albicans in my gut. As I expect my body is not great at detoxifying itself, if I have a candida overgrowth the death of the yeast cells (no longer fed on the sugars I usually consume) would pollute my body while it struggled to deal with them and make me feel ill. So that was the theory. I also took two different probiotics, not specifically to combat the candida, but to combat the bad bacteria in general.

The week did not really see me change my diet radically. I cut out plain and flavoured soya yogurt and (chocolate flavoured – sob!) soya desserts. These soya products were a daily staple in my diet. Even the plain one has a bit of sugar so out it went. I also switched from sweetened soya milk to unsweetened (which did not make my morning gluten-free porridge the highlight of my day, as it was previously). These were the most difficult things. Also quite tough was no honey on my rice cakes and no milk chocolate covered rice cakes either. Also no crystallised ginger and no pears (the only fruit I eat regularly, again due to digestive issues). There are also other things that you should avoid on the anti-candida diet, so I tried to do that, although I got quite annoyed at the varying opinions about what was ok!

Due to my already restricted diet the things that replaced these foods were largely nuts and seeds. I (well, my partner) made coconut and almond macaroon-type things with Stevia (a natural, calorie-free sweetener), and just slapped lots of almond butter on rice cakes to finish my meals instead of my sweet fix. I also nibbled on nuts and seeds. All this is good, except I think it left the easy and not so easy to digest foods out of balance and my stomach has not been overly happy. It has not been awful, and despite a bit of over-activity my wind levels have been lower than usual. Whether that is due to the probiotics, or less soya products, or less sugar itself I have yet to discover. As this is a major source of discomfort and distress to me at times I am happy that something has improved it.

The week started when I had just had a busy weekend so I was expecting to feel not so great for a few days. As the week went on I felt worse than expected as I did not seem to be recovering and wondered if I did indeed have a candida issue, but as time passed I just could not see that I would ever really know what was going on and felt that my diet was just too limited and my stomach problems were getting me down. I had a lot of pain in the week (not trapped wind though!) and my stomach felt very sore. I had spoken to a couple of people online who have definite candida issues and their experiences were so different from mine. Despite the fact that I think I have Leaky Gut Syndrome or Gut Dysbiosis and everything about these conditions talks about candida overgrowth, I am not convinced it is a big issue for me. I do think I have issues of other bad bacteria (hence the wind issues and the smell is indicative of ill-health, shall we say).

I was originally going to do the diet for longer but have decided to continue with a slightly more moderate approach and include fruit, with occasional honey and even a bite of dark chocolate now and then! I am continuing to research types of sugar and sweetener and see if I can keep refined sugar to a minimum. I also want to keep working to make my diet lower GI (Glycemic Index) as I think this is an area where my current eating “habits” let me down and are bad for encouraging bad bacteria. I say habits, but really they have been necessity, not choice or habit; but still I want to see if I can do better. I have bought two new enzymes, one is Gastro by Enzymedica and I am hoping it will help me to digest things that are higher in fibre and really open up my diet (beans and peas, please!). The other is for gluten/dairy digestion. I have not tried it out yet as gluten is not allowed on the anti-candida diet, but I would really like to be able to eat some gluten, especially whole grain wheat and rye on occasion. I also hope that these enzymes will help me introduce oats more successfully as these are meant to be very good for gut health. I think I just need to start gently and see if the enzymes help and if I can get used to these more challenging foods over time.

The other issue this diet has exposed is the potential dangers of eating too much soya. I don’t not know how real these issues are but you can read a bit here: http://www.livestrong.com/article/371222-what-are-the-dangers-of-too-much-soy/ and a quite thorough article here http://www.holistic-wellness-basics.com/soy-foods.html. (There are probably better sources of info, I just had a quick google – also wordpress is not letting me do linking properly so sorry about the mess). I had read things about this before but had not really taken it in (or wanted to, as I feel I have little choice over my protein sources as a vegetarian) but there is quite a lot of evidence that it is not so great. I cannot radically change my diet overnight but I aim to find alternatives to some soya products as I am eating a lot. I can drink rice-based milk and use that for my breakfast, but I don’t think it is low GI or very nutritious. There are various nut and seed-based milks but they are really very expensive. I have seen recipes for making your own almond and other milks, which doesn’t look really hard but I would need help with that and it’s one more thing to ask for help with from my very busy partner. If you bought the nuts in bulk it might be more cost-effective though than buying ready-made.

I tried goat yogurt yesterday (and bravely had more today!) as it is meant to be the most digestible dairy source and I find that cow’s milk and yogurt upsets me. The taste was just too strong for me and although I will finish the tub I have (with stevia sprinkled in it was a bit better), I don’t think I could get used to it even if my stomach allows it. There is a brand called Lacto-free which make yogurt without lactose, so I am going to try them and see how that goes too.

One great thing about the sugar-free time was that I was not craving sugar in particular, only missing some favourite foods and finding it hard to find alternatives that my digestive system would agree with. Linked to this, I was not actually craving food in the same way as I usually do. Hunger felt less urgent and I was less bothered about snacking an hour or two after eating, so I think my blood sugar was much more stable. That has to be a good thing for the energy-challenged. I also really enjoy the tea made from grated fresh ginger so I will continue to drink that. I would like to preserve the good things from this experiment, even if I still don’t really have an answer about Candida…

This was a difficult post to write as there is so much information about this subject to get your head around, so I have tried to keep it simple (honestly!) and have linked to websites so you can read more if you want to. I am not expert on this and am just trying to make sense of it myself so please look into it yourself rather than relying on this information when trying to solve your digestive problems. I am unsure about the validity of claims made by some websites and the products they promote (enzymes, probiotics and other supplements).

Firstly there are two things to define:

1. What is Leaky Gut Syndrome?

Leaky gut syndrome is not generally recognized by conventional physicians, but evidence is accumulating that it is a real condition that affects the lining of the intestines. The theory is that leaky gut syndrome (also called increased intestinal permeability), is the result of damage to the intestinal lining, making it less able to protect the internal environment as well as to filter needed nutrients and other biological substances. As a consequence, some bacteria and their toxins, incompletely digested proteins and fats, and waste not normally absorbed may “leak” out of the intestines into the blood stream. This triggers an autoimmune reaction, which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities, joint pain, skin rashes, and autoimmunity. The cause of this syndrome may be chronic inflammation, food sensitivity, damage from taking large amounts of nonsteroidal anti-inflammatory drugs (NSAIDS), cytotoxic drugs and radiation or certain antibiotics, excessive alcohol consumption, or compromised immunity. http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html

This is a really good description of how a leaky gut can affect our health and the processes involved as well as some information about what to do about it.

Interestingly it suggests going on an elimination diet for a few weeks to allow things to calm down. I have done this and yes, my symptoms have calmed down, but I have not so far managed to move on to the next stage of reintroducing foods or improving my digestion, despite many attempts. I have been on what is basically an elimination diet for two years! I have put this down to my autonomic nervous system and it’s effects on the gut (it affects the spasms/motility) and is also responsible for my POTS symptoms. It may be that there is more to it and although I did take Kefir for a year (a kind of probiotic) I have not really focussed on these factors recently.

2. What is Gut Dysbiosis?

A frequent disorder (in ME/CFS) is dysbiosis, i.e. the overgrowth of pathogenic bacteria in the intestine… Chronic inflammation of the gut mucosa, resulting from dysbiosis, can lead to the development of leaky gut syndrome.

This quote is from the website  of the company providing the test that I did almost two years ago to see if I had Gut Dysbiosis. I had a moderate positive result.

On Dr Myhill’s site she explains that a positive test demonstrates not enough good bacteria and too much of a bad one:

Prevotella (bacteroides in the upper gut). These ferment to produce hydrogen sulphide. Hydrogen sulphide inhibits mitochondrial function directly. So a positive hydrogen sulphide urine test shows there is a severe gut dysbiosis with overgrowth of prevotella secondary to undergrowth of the goodies!

So, now you understand the basics, I am going to just focus on my personal issues and my plan to deal with this problem (still under construction!). So firstly, based on Dr Myhill’s information what am I doing right and wrong in terms of healing my leaky gut and its bad bacteria?

Things I am doing well:

  • Diet: While not Stone Age I have not been eating gluten grains or processed foods.
  • Diet: I eat lots of nuts, seeds and vegetables.
  • Diet:  I also eat fairly small meals and snack quite often as my blood sugar does not seem too stable (possibly due to the high GI foods I can digest).
  • Diet: I do eat spicy foods which I read is good for killing bad bugs – good news!
  • I have started to take digestive enzymes. These can help me to reintroduce foods that I have struggled to digest previously, and which will hopefully reduce the amount of undigested proteins leaking into my blood stream and therefore reduce bodily inflammation and immune system stress. They can also help to heal the gut wall, they say. See: www.enzymestuff.com
  • I take vitamin B12 which is good for stomach acid production (I think I read that somewhere, though maybe not on Dr Myhill’s site!)
  • I try to chew well.

 

Things that I am not doing well:

  • I take the contraceptive pill which suppresses the immune system and enourages yeast overgrowth
  • I am not on the Stone Age Diet (As a vegetarian I cannot really follow this diet but am not doing everything wrong, see above!). What I have not done brilliantly is that I have struggled to digest a lot of fibrous vegetables and carbohydrates, so my diet has been good for controlling IBS symptoms but been a bit too high GI. I don’t think this is good for weight management, feeling full/energy and I think possibly not great in terms of controlling bad bacteria in the gut (as good bacteria like/need fibre to feed off and break down in colon? I am a little unclear on this).
  • Also I do eat things with sugar in, though not huge amounts compared to many people. I don’t actually add it to anything (except honey – yummy!).
  • I need to take more vitamin C which can kill off bad bugs

 

What else can I do heal my Leaky Gut and improve my digestion?

Probiotics: Dr Myhill does not seem very convinced about taking probiotics, and also mentions not to eat sugar when taking Kefir (which she does like, it is a kind of probiotic that you make/grow yourself). (Did I take it for a year for nothing then as I ate sugar?).

This site has lots of information on probiotics.

I have bought two different probiotics and my plan is to have two weeks on a sugar-free diet and take them then for maximum effect (as less sugars for the Candida/yeast to feed on at the same time). I thought if I do it properly I should get some symptoms of die-off (feel terrible!) if I have yeast overgrowth so I should then know if it is an issue I have to take seriously longer term. I have been talking to other people with very bad Candida issues and I don’t think it is a big issue for me as I don’t have any obvious yeast issues. I think perhaps other types of bad bacteria are more the issue, but I will see what the sugar-free diet is like. I am unclear if a sugar-free diet is good for getting rid of other bad bacteria, not just yeast overgrowth. If so it could be a bit confusing.

L-Glutamine – I have bought some of this and have started to take it, but had diarrhea so have stopped for now but will try again.

Systemic enzymes: As well as enzymes to aid digestion, I have also started to take a high protease enzyme between meals as this is supposed to cleanse the blood of toxins that the liver has struggled with, and also reduce inflammation and kill bad bacteria. It seems to be making my stomach ache a bit more. I read to stop for a few days if this is the case then restart, which I have done, but it is still sore. It is often sore though, so perhaps I am misjudging it! There is lots of information on the Enzyme Stuff website as well as the websites of retailers.

Ginger tea is meant to be good for all things tummy – I am grating fresh ginger and making tea with it.

Hypochlorhydria: Stomach acid breaks down food into digestible form, if you don’t have enough then digestion will be very much impaired. It also controls bad bacteria etc. If you think you have low stomach acid then drinking cold water just before or after a meal is bad as it inhibits acid production. More on Hypochlorhydria here and here (the second link is a site about bad breath but has a good summary of the signs, issues and possible solutions to low stomach acid). Both sites mention Betaine HCL, which is an acid supplement. I have decided not to try this as it seems quite risky (being strong acid!) and would talk to my GP before taking it.

I am also trying not to drink too close to eating. I suspect my stomach acid is a bit on the low side and also I don’t want to dilute the action of the enzymes I am taking so it is best to let the food digest before flooding my stomach!  (I think common sense needs to be applied with this, especially for someone like me who needs to consume a lot of fluids for other health reasons, but it might be worth experimenting with if digestion is bad). There is some info here and here (see end of first paragraph).

There are various herbal anti-candida, anti-fungal, anti-viral type things you can take but they are either really expensive or seem to have some side effects/controversy so I am holding off on them for now, at least until I am convinced I have candida issues (I am not convinced yet, despite so many sources linking leaky gut with it!).

Additional websites to look at:

http://mdheal.org/leakygut.htm This is an interesting article, though not easy to read or understand in parts. The list of “Trophic Therapies” about a third of the way down in interesting. It also lists tests that are available to help identify specific issues for the individual

This is a quick post, not the one on leaky gut syndrome that I promised you! That is not finished yet. This is just to show how ridiculous the lives of chronically ill people can be! It is no wonder I get so little done in a day and am mentally exhausted! This stuff takes a lot of concentration…

 I have started taking digestive enzymes recently as described in my previous post. I have added a high protease (systemic) enzyme to take between meals (to allegedly reduce bodily inflammation and pain among other things). I have also started taking L-Glutamine (though I suspect it has caused diarrhea so I have paused for now to test that, but let’s assume I am taking it. I also read that drinking fluids should be avoided so as not to dilute the enzymes in their very important work, and that if you have low stomach acid the dilution is not good (I don’t know if this applies to me but it could and seems likely) so I should not drink for an hour before meals or two hours afterwards. The protease enzyme is the same rules, but only half an hour before meals is ok. I also take an anti-spasmodic and other medications not related to my digestive issues. I also have in the fridge two probiotics which I plan to start taking soon. I generally need to drink about 4 litres of fluids per day (that’s up to 4x what people usually drink unless it’s hot weather) to help with POTS symptoms.

So let’s see what a day looks like if I do this properly:

8.30am wake up and take my usual medications with water (most of my glasses of water and cups of tea are 1/3 litre).

9am Get up and have a cup of tea. Take vitamins including zinc (good for digestive/gut health). I really should take more vitamin C too – note to self – it apparently helps kill bad bugs in the gut.

Also put Alpha Stim electrodes on my upper back as I do every day (my pain relief machine).

9.30am take antispasmodic and L-Glutamine

9.45 take digestive enzyme (as it is a veggie capsule I read it needs time to dissolve so to take it a bit before eating, but other places say to take at the same time as food, so I am confused about this one. Let’s say 15 mins is ok for now.

10am take probiotic (type one) and eat breakfast

Also move electrodes on Alpha Stim to anywhere else that hurts or just to another position for upper back/shoulders.

11am change setting on Alpha Stim to CES and put earclips on

12 midday take systemic enzyme and wait half an hour for it to get into my system (think this way round makes sense or I would drink then have to wait an hour?)

Alpha Stim done.

12.30 take usual medications and push fluids for half an hour, perhaps 1 litre.

1pm stop drinking and wait an hour before food

1.30 take antispasmodic and L-Glutamine

1.45 take digestive enzyme assuming it takes time to dissolve 

2 – 2.30pm take probiotic (type one) and eat lunch

Go to bed and rest/nap

4.30 wake up and take systemic enzyme

5-5.30pm take usual medications and drink fluids – 1 litre

6pm take antispasmodic and L-Glutamine

6.15 take digestive enzyme

6.30-7pm take probiotic (type one) and eat

9pm drink – not much as getting late and don’t want to be up all night – 1/3 litre

10pm – take usual medications and probiotic (type two). Make way to bed.

So I have only managed to fit in 3 litres of fluids, plus a bit with tablets. I could take a jug and drink more before getting up. This regime also prevents me eating little and often as I prefer and forces me to make sure I have eaten enough in one sitting to last me 4 1/2 hours. This goes against advice for managing IBS and POTS symptoms. I also really like to finish a meal with a cup of tea, but I have known for a long time this is not meant to be good if you have digestive issues.

I have tried the systemic enzyme for a few days and that was fine although my stomach seemed to be getting more sore each morning so I am resting it before starting again as is advised. I am unsure about the L-Glutamine but will try it again in a few days. My plan is to do this properly in a couple of weeks and go sugar-free for that time to see if I get any symptoms of die-off to test for a yeast overgrowth. If I feel fine (normal for me!) than it suggests that yeast is not a big issue for me. The more I read about Leaky Gut Syndrome I suspect it may be an issue, despite being quite skeptical, but I think not too extreme for me. I hope so anyway. Even if I cut out all sugars I will still have to eat the diet that I can currently digest which is not very low GI so there will be sugars present (rice/potato) but it will be reduced and that should trigger some reaction. I think taking the probiotics at this time will maximise their efficacy as the bad bugs will be dying anyway –  ha ha evil laugh.

Someone had generously given me some Stevia to use during my sugar-free fortnight. My plan is to make some chocolate biscotti (I have found a recipe) so that I can end meals with something sweet and also sweeten my breakfast as I will have to switch to unsweetened soya milk (yuk!).

Sorry for the lack of links in this post – I really have no energy/time for it. Please leave a comment if anything is unclear – my next post on Leaky Gut Syndrome (coming in a week or two) should clarify it all anyway!

*I do not advise anyone to undertake this strange regmen, I know not how useful it will be, only using myself as a guinea pig, as usual…

Well, it is the end of February. One sixth of the year has disappeared and it has happened pretty fast. I do know where it has gone, I have been working on my Disability Living Allowance form for most of this time, when I have been up to it.

This form has taken over my life, along with appointments with all the medical professionals involved in my care to ask them to write supportive evidence for me in support of my application and also to talk to them about what is needed (as usually knowing about my medical conditions does not mean a doctor knows about how it affects me personally, which is what the benefits people need to know).

Last time I got help from a charity as it was the first time I had applied and had little idea what was required. This did help a lot in terms of energy for filling in the form, though not the outcome. This time I have largely filled it out myself, which with my physical and mental stamina has meant it has taken me a very long time. My partner has helped me type some parts and has physically written up the form, as well as checking what I have written and suggesting things I have forgotten, and that help has been really helpful but she is so busy that I could not ask for more and frankly, I am the one who knows the most about it and how it needs to be done. She could have gained that knowledge but it just seemed above and beyond to ask her to do that on top of everything else she has on her plate.

I know that my facebook friends and others are probably sick of hearing me talk about it as I have vented a little during the process and all will be relieved to hear that it will be sent off this week! Hurray! I cannot wait to see the back of it though I know that next time I hear anything it will be a request for a medical, which last time I found VERY traumatic and lead to the denial of my claim and I had to go to appeal. The whole process took a year. It was successful in the end, but I am really not looking forward to that all over again. It really takes over your life and energies and it was a hard year for me. I have filled this form in so thoroughly and carefully in the hope that it will go through and I can avoid that year of hell this time. I am crossing everything but I know that just about everyone with ME goes to appeal. Even my CFS specialist said so, so I should not get my hopes up. I know that so many people are going through benefits processes and appeals at the moment, the whole UK system is in a mess and people are being treated so unfairly. It is really inhumane.

Anyway, two months of my available energies have been used up already and I really want to use what I have now for better and more creative things. I have several new arty books from Xmas that I want to look at for inspiration as well as projects I have been planning for months (actually years) that I want to get on with. I also have a lot of fiction/non-art books that I want to read – I love having a pile of books waiting but at the moment it seems a little too high and I keep dipping into new ones before finishing the ones I am on! I need to focus on the ones in hand and ignore the temptations of the bookshelf or I will not fully enjoy each one as I go as I will have half an eye on the next one – no way to be!

One of the best things to happen so far this year was a couple of weeks ago I went to see The Imagined Village. I have seen them before and knew it would be good, but it exceeded my expectations (except it seemed to be over far too quickly) and it was a night to remember! I always love to see Eliza Carthy live, and they are all such talented and enthusiastic performers that it is a real joy to see people doing what they evidently love. There are more concerts planned by them and other related artists to raise money for Norma Waterson (Carthy) and family who is Eliza Carthy’s Mum and who is very ill in hospital. Details here.

Other news, my sister is coming to visit me this week! I have not seen her for nearly two years and I am looking forward to some fun! Also my garden is coming back to life after all that snow in December and I am feeling a little hint of spring in the air… I hope to be able to get outside a bit more soon.

Also interesting to note that though I don’t feel dramatically better, I feel that my condition is more stable in terms of energy at the moment. I do not seem to have much variation even after I have been to an appointment (or been to a concert!). I do still get post-exertional malaise, but it is not as severe as in the past (relative to my overall function levels) and I am finding I am getting more pain instead, if anything. This change is actually welcome. (I think one of the worst things whatever level of function is the unpredictable and ever-changing nature of this illness and not knowing what is ok to do and what the day will bring). I do rest more before and after an event and I am careful in what I choose to do and cannot go out often, but I feel it is not such a big risk to go out occasionally. I don’t mind taking more painkillers occasionally for a good reason. I think my wheelchair is helping me not have such a dramatic reaction to being out, and also perhaps my Alpha Stim and Acupuncture are helping me. I am sleeping better in general and I think this has a lot to do with it. My nerve pains are also more under control with the Gabapentin dose I am on and this of course helps a lot. Anyway, it is nice to have some calm and I hope it continues like this a while, especially if it means I can do some nice things at home and pop out a bit more. I could do with some fun, and I am sure I am not the only one!

The last few weeks have been eventful.

I saw a Pain Specialist on the NHS a few weeks ago and it was a traumatic experience for me. I was not going to blog about it as it is a bit complicated but I will say that firstly I was very distressed by my level of cognitive function during (and in the days after) the hour-long appointment. I still have a very patchy recollection of what happened and what was said, complicated by my partner’s version of what he said (and what he meant by certain things) being different to mine, so in going over it together to clarify it I was further confused and my memory warped. Secondly, the man himself was quite strange and I found his style of communication and approach not to be one I could work with. I am still unsure what exactly he was offering me,  though I have been told by others who have been to similar things and by my CFS specialist that it is CBT-based stuff though he seemed to be dressing it up as something more. I was open to trying that for pain, which is why I went as I suspected that was what was on offer, but unfortunately he kept asking me questions and saying things that covered not just pain but my illness as well and I could not handle the overly psychological emphasis where that was concerned. He said a couple of things that were very dismissive of my physical illness and if he did not come from the “CFS is a false illness belief” school of thought he frankly should have enough nous to know it would be a sore point and make that clearer… he did not. I have been so scarred in the past that I cannot handle that kind of territory, partly as my cognitive problems mean I cannot challenge things that are said at the time or be assertive enough to make sure I am understanding things correctly if I am over-reacting. To get over this history and aversion even if he could help me with pain management would take a lot of work and feel like a fight, and I do not have the strength.

I have also just seen my CFS specialist. It has been over two years since I last saw him as I see the POTS specialist regularly so there is not really a need to see both. I wanted to talk to him about a few things. We talked about my neuropathic pain (something I did not get to ask the pain specialist about properly in the whole hour as he liked to talk and had his own agenda). I asked him why I have it, if it is common with ME/CFS, if it is a sign that I have fibromyalgia and if I can expect it to get worse (if it is degenerative).

His answers were: That is it part of the neurological changes that are responsible for the over-sensitivity to light, noise etc in pwME (he calls it CFS of course) and that this is just over-sensitivity to touch. I am very over-sensitive to touch, certainly, and cannot be touched much in everyday life, or only in certain places and in certain ways. The pain is triggered by touch, whether that be of air, fabric, moisture, heat, cold, my own hair or dead skin, etc etc, but it seems to me that touch-sensitivity and this pain are a bit different but neurologically they are obviously very connected… anyway, next question:

He says, yes, that yes it is common with CFS. I have never spoken to anyone with CFS that has these symptoms as extremely as I have, but maybe they do exist, or perhaps he does not realise how extreme my case is? Some people with Fibromyalgia seem to share these symptoms but again I have not spoken to anyone who has it exactly like I do… granted, he sees/knows more people than I do! (I also asked about my Trigeminal Neuralgia as that is also nerve pain I wondered if it is connected. He said it is not associated with CFS and it just something I happen to have and will continue to have on and off).

As for if it is Fibromyalgia (FM), he says that he sees FM and CFS to be like a piece of string with pain being predominant on one end and fatigue being predominant on the other and that people are somewhere along that spectrum. He said there has been one study which suggested they were distinct entities but he is not convinced. He says that many people with CFS have fibromyalgic pain to some extent. I would suggest the piece of string could be a loop as some people have both fatigue and pain pretty badly!

As for the degenerative nature of the neuropathic pain he says it will be worse when my condition is worse and improve when I am in better phases… no discussion of whether my condition in general could be degenerative, but he seems to think waxing and waning is the general pattern. I have been stuck in this bad phase a while though! Bring on the better phases…

He also said that I would probably not want to up my dose of Gabapentin much more than the level I am at… the Pain Specialist said it could go higher but that whatever I do, eventually my body will get used to any pain medication and the pain will be back how it was before. There’s a cheery thought. The Pain Specialist did talk about medication and said he will recommend some options to try when needed so that may be a useful outcome from that meeting.

I was happy with the CFS specialist appointment and his answers to my questions.

Interestingly the CFS specialist recommended a book by Jon Kabat-Zinn. I have ordered it. It is about mindfulness and coping with illness and pain I think, though I am not sure how specifically targetted to that. After a quick survey of facebook friends I thought it sounded worth looking into as people said he was good. One friend also mentioned Breathworks to me and the courses on Living Well with Pain and Illness look really interesting to me. I do not think I am well enough to attend the courses in person, but would prefer that, though they do do a telephone-based version. I am going to look into it.

I am reassured by my openness to this that I am not closed to the mind-body connection or to looking at my own behaviour in order to get the most out of my life limited by illness and disability. I do not know why I over-react to the CBT stuff which may in fact just be trying to do the same thing using a slightly different approach in the end. I cannot help feel though that with the CBT stuff the people offering it to me seem to want to use it to deny my illness, not to start from a basis of “yes, you are living with a physical, likely permanent and pretty severe illness, but let’s look at how you can live best with it,” but more like “You are focussing too much on your physical symptoms and making them worse, and frankly we think that much of it would disappear if you just did this CBT (and were open enough to it) and you would live a much more normal lfe.” I know that how we respond to our illness and pain, how we think and how we react can affect our experiences but there is a huge limit to the curative effects and this is the issue I have, I think; the basis and assumptions on which this is offered. The breathworks video I watched on the site showing an interview with the founder of the company shows that her attitude is much more about accepting the reality: I have pain, I have disability, I have illness and that is unlikely to change. Then we can move on to work with this reality.

Am I being over-sensitive to the Psychologist’s approach and denying myself something free and useful on the NHS? I just know it causes me so much stress to engage with it, it is probably not worth it anyway… it looks like I will be finding my own way.

One thing that came up in the Breathworks video is remembering a happy/pleasant experience in order to take yourself away from current distress. I tried it this morning when I woke up too early and was in tears in seconds. I have tried this before with similar effects. It seems that the grief is still just below the surface and will not go away despite having now been ill and supposedly processing this fact for twelve years! I think it is harder to grieve when things fluctuate and change and nothing is certain, or we grieve for what is lost, then we become worse and have to start the process all over again. That is how it feels anyway; constantly adjusting to a new reality. Well not constantly, as nothing much has changed lately, but quite often. My partner suggested thinking of something happy from my life now, rather than picturing something from “before”. I very wise suggestion and perhaps I need to choose something that is still possible, at least while it seems I am feeling so much grief.

I need to work on acceptance, though I do have quite a lot by now. I am not sure the grief necessarily leaves us just because we are accepting though? I certainly think acceptance is easier when we understand what is going on and I think I am getting a better understanding of how my neuropathic pain fits into the bigger picture now.

One thing that really made me angry in the Pain Specialist appointment was him asking about what I wanted to do with my life and how I saw the next decade etc. This always annoys me. How can I express in a sentence all that that question summons to the surface? How can I express how I get through each day and try not to make assumptions about the future? How can I endure sitting there and having my levels of acceptance and hope judged by another stranger who clearly has no idea what a loaded question he is asking? How can I genuinely answer a question I have been asked it too many times?

I answered after a long silence with a bit of waffle, a shrug and a “que sera, sera!” I was not functioning well cognitively and just could not come up with anything more lucid, but looking back that is how I feel: what will be, will be. I do not believe that hope will save me, I believe in acceptance. I may have hopes and dreams and they are important but I am not about to share them with him or anyone like him who cannot see the reality of my illness and is already judging me before I step into the room, or at least has not got proper knowledge of my illness on which to base his assessment.

Defensive? Probably. I am trying not to care and not to over-analyse myself, but that is also hard not to waste energy on… is my confidence another casualty?

ME/CFS Awareness

ME/CFS Awareness

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