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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…

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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…

Recently a friend of mine started asking around if anyone had tried taking digestive enzymes for their IBS. The one she had come across was specifically for helping to digest gluten. I had no idea that this kind of product was available and started to have a look into it.

I knew that some people took Lactase for dairy intolerance but despite the fact that I don’t tolerate dairy products very well it has never been something I have really missed so I have not tried it (I can eat a bit of cheese, so I am happy). I also have heard of a product that you can get in the US to help digestion of beans, which I assume is also an enzyme product. The promise of help with gluten was a revelation! (The products do not seem to help much with Coeliac Disease, only gluten intolerance, though research is being done to develop enzyme treatments in future as far as I can gather – I have not done a lot of reading on this but just to be clear gluten intolerance is not at all the same as Coeliac Disease).

I found this website which has a lot of useful information on it, which I have not yet read much of, called Enzyme Stuff. I read on there that I should choose a product that has DPP-IV Activity (whatever that is!). The one I am trying has per capsule a 300mg blend of:

Dipeptidyl Peptidase IV (DPP-IV) SEB-Pro GR (trademark symbol) (Protease I, Protease II, Protease III, Protease IV, Protease V), Amylase I, Amylase II, Glucoamylase, Cellulase, HemiSEB (Hemicellulase), Alpha-Galactosidase, Xylanase), Lactase and Lipase.

The capsules are vegetarian which is nice.

It “supports the digestion of protein in gluten-containing cereal grains including wheat as well as casein-containing milk products and other high protein foods”.

As it has so many enzymes I am planning on testing it on a variety of foods that I struggle to digest, not just gluten and dairy products.

For the last 2-3 years I have not eaten or have rarely eaten (and with consequences!): Gluten containing grains, any other grains except rice and quinoa (which is technically a fruit they say), any fruit except peeled pears and avocados, any potato that is not freshly cooked and still hot, beans and pulses, certain tougher or fibrous or cruciferous vegetables, vegetarian protein products except tofu, eggs, dairy products except small amounts of cheese and chocolate (of course), salads… can’t think what else! I am vegetarian so I already do not eat meat and fish, so you can see how limited my diet is. I am lucky that nuts and seeds have been fine.

So far this is what I have done:

Firstly, I took a capsule every meal for nearly three days just to see what effect it would have on me while I continued to eat my usual “safe” diet. I did not want to be confused by any reaction to the tablets themselves, though this was unlikely as I chose these ones in particular as they don’t have any extra ingredients that might cause me trouble (some products actually contain gluten and other problematic things as well as the enzymes, which seems strange, though perhaps demonstrates product confidence!). Result: things were not perfect either before I started to take the enzymes or during those three days, but there was no real change.

On day 3 I had a tortilla wrap (soft white bread) with fillings that I would usually eat with rice and I knew were safe. Result: No major problem, I did have increased wind and activity especially the following evening and it stopped me sleeping as well as usual, especially as my bladder was more sensitive and there was a bit more discomfort than usual but not too painful. No constipation or diarrhea, nor did I feel ill in myself which is a common result for me of eating something strange.

On day 6 I ate an egg! This is a big deal for me as egg yolk has long been as issue for me. As the enzymes mention high protein meals, I thought it was worth a try. Result: again, some reaction but nothing unbearable. Much the same as above.

I waited a bit after that to check for constipation as eggs are bad for that, and also as had visitors I held off trying anything else in case of anti-social bodily behaviour, so –

Day 10 I went to a pub and had a cheese baguette with chips! Chips eaten out are a big problem for me as potato starches become indigestible (and cause trouble to me at least) when they have cooled, so anything like pub chips that are cooked in two stages are not good. The following day (gaining in confidence) I ate a cheese sandwich made from lovely granary bread with mayo and a little bit of red onion and lettuce. That was delicious! Result: That was three days ago and there has been no real issues for the increased risky foods all in one go, or for having them two days in a row!

It is early days and I need to do a lot more experimentation and also decide what changes to bowel habit I can live with and what is too much. There have been changes and I would not like them to be constant, or to be worse (if I ate normally it would potentially be much worse as most people eat gluten and other foods I am very sensitive to, at every meal). However I am really happy with how these first experiments have gone and especially that I do not feel much worse in myself. I am allowing for a period of readjustment to a change in diet as I have not eaten these foods for so long. I am still taking my anti-spasmodic tablets which I think are helping, but I know from trying a few different foods while just taking them that adding the enzymes has really made a difference as I was still having fairly marked reactions before I started to take them. I know it may seem like I am being over-cautious but I really have had very strong reactions to so many foods and have tried again and again to reintroduce foods back into my diet with no luck. This really has been so much better than I expected and I am looking forward to trying lots of different things and seeing where the limits lie. I doubt this will be a complete solution to my problems but I am really hopeful from these initial tests that it could be quite life-changing.

I suspect that I have a leaky gut and that the reason I often feel ill when my IBS flares up is that I am actually being poisoned as waste products “leak” back into my blood stream rather than being broken down as they should be. If enzyme supplements can help break these products down then this would be a big bonus for me. I have not felt this poisoned feeling at all! I might do another blog post on leaky gut issues as it is quite complex and I really should read more about it and see if there is anything else I can do to help myself improve/heal. I wonder if I should take a probiotic as well, I know it is recommended. I have taken them sporadically before. I also know that zinc is recommended and I do take a zinc supplement already.

I will read more about it all, and also perhaps try a different product next time to compare, as I have seen products listed for different issues and I need to research if any would be a better fit for my problems. If I can eat a more varied diet (and digest and get all the goodness out of what I eat) this can only be good for my health and also will allow me to go out to eat sometimes and even stay overnight somewhere without having to take my own food with me! This will mean a great deal to me and open up possibilities for occasional fun and sharing more things with my partner and friends. It will also help my partner if I can eat more convenience food occasionally as all my food has had to be cooked fresh (there are a few things I can eat as leftovers/reheated but not many). Also our menu at home, while tasty, has been very limited and I am sure she will enjoy a bit more variety as often there just is no time to make separate meals for each of us and my needs have dominated what we eat most of the time. Also if I eat less specialist foods our shopping bill might come down a bit. Well, it might help pay for the enzymes anyway.

So tomorrow is fresh pasta day! I can’t wait!

The title is to warn you all that this is not important stuff, only I feel I should make a record of certain symptoms fluctuations and patterns regarding medications so that I can make some sense of it (potentially) along the line. It is a giant ramble so unless these issues apply to you, don’t bother reading! I have bolded key themes, for easy skimming 😉

(There is a good link to a webinar about POTS and Orthostatic Intolerance at the end if you want to understand it better.)

~~~~~~~~~

Since my holiday my IBS has been in a general flare – main symptoms being my usual issues of increased wind and bloating/abdominal pain and more frequent “happenings” (shall we call them?). I have also had a bad bout of diarrhea (though i did eat more veg beforehand which did not help) and also an evening of very bad nausea (though i did narrowly avoid being sick) and this is rare for me.

While on holiday things were actually pretty good in this department, but things have got gradually worse. The only thing that has changed is that I started to take Eszopiclone – a sleeping tablet – every night from the start of the holiday. The reaction was obviously not immediate or dramatic, but I wonder if this medication is irritating my digestive system. It does say on the packet that it contains wheat starch and lactose – but surely i cannot be so sensitive that half or sometimes one whole (small!) tablet a night can do this? I think I am more susceptible to starches. Dairy products do not do me much good but I do eat some cheese, so that amount of lactose really should not be an issue. Or, of course, it could be the drug itself or just a random flare-up. I have not changed my diet in any significant way (the chance would be a fine thing!).

So, while not a major problem at this stage, it is a significant change and not one I am happy about.

That said, my nerve pain/itching has been generally improved since the holiday and I wonder if sleeping better has helped this. This Neuropathy, as it is most recently diagnosed, was very bad in the weeks before the holiday, and during the holiday itself. I have not yet heard back from the specialist about upping my dose of Gabapentin, which i take for this, but it has calmed down a lot anyway. I would still like to take a higher dose as it is still a big issue for me and I have to stick to certain rituals to avoid it which i would like to relax on, but it has been nice to have a general reduction in symptoms. Also perhaps the slightly less hot and humid weather may be helping.

So, my plan of action is to stop taking the sleeping tablet (did not take last night) and see if after 10 days or so anything has improved “down below”. I may have to start it again and re-stop to confirm the link as life is never that simple with these illnesses. Also I am going to research and see if there is a brand that does not contain the wheat starch, though that is a long-shot.

I have also stopped taking my antihistamines since the holiday, in a gradual fashion, on advice from the dermatologist and POTS specialist, who both agree the Gabapentin is the best drug for the symptoms. I can still take an anti-histamine if i get a bad attack of itching/pain but am not taking them on a regular basis. I have been very surprised that this reduction has not caused a flare-up in symptoms as when I started to take them I did experience an improvement. I have wondered if that improvement was due to the soporific effect of the night-time antihistamines, as I slept better in the first weeks of taking them that I had done for literally years. I think better sleep could easily account for reduced nerve pain, and I wonder if that has happened over the last few weeks on the new sleeping tablet also, as the gabapentin alone did help but things improved again with better sleep.

Another thing to note is that I do not think my days are dramatically better since taking the sleeping tablet. I think i assumed I would feel much better and have more stamina if I slept better. This has not really happened, but I would say my mood and stress/anxiety levels are improved. Being awake in the early hours of every night usually with neuropathy and other discomfort (bladder/back pain), as well as getting up much more for the toilet every night was hard to cope with. I have enjoyed getting up less and usually getting right back to sleep even if I do. I had hoped to phase out my daily nap when sleeping better, this has also not been as easy as I would have hoped. Some days I feel I have really slept well and when I go to lie down I do not sleep properly, just rest. This is good for “sleep hygiene” though I have come to realise there is only a certain amount of control I can have over that. I have tried to do everything right for years and my sleep has not been good quality. Most days I still need a nap, only an hour of actual sleep, though I do lie there for longer in total. In an ideal paced world maybe I could avoid it but in reality there is always something to recover from, rest for etc.

My cognitive function has been quite low at times and I wonder if this is a side effect of the medication. I don’t always wake up with a hangover feeling as such, or no more than is quite usual. I would expect better sleep would make me more mentally alert but I have not found that at all! When I have taken the drug I do find that I do not remember things that have happened in the night and cannot speak/think clearly if I try to have a conversation if I wake up in the middle of the night… but I was like that last night without the drug so maybe it is just a symptom of being really asleep!

One other thing to note is my neck – it is literally a pain in the… neck! It has been very weak for a long time and the muscles on top of my shoulders where it joins my neck (an anatomist I am not!) are constantly tight and painful. The smallest thing seems to trigger it into pain. This is not a new problem but it has got worse. I find the positions that I can hold my neck in comfortably are limited to about one, sitting with my chin tucked in, basically (lying down on my back is also good). Any activity where I have to hold my head in any other position, or move about too much can trigger it off. It also clicks in a nasty cracking way which cannot be good but feels necessary. I cannot think that it is just deconditioning of my muscles as if there are any muscles that are constantly in use it is the ones holding up my head! I do not lie in bed more than 12-13 hours out of 24 so they are being used quite a lot.

Regular readers will know that I have tried an osteopath and that did not work out, so I do not know what to do apart from mention it (again) to the ME/POTS specialist on my next visit. Upper back/spinal issues have been a constant issue for me for the duration of my illness, and yet are given no attention by the medical profession (I did get a useless physio referral once or twice). Hmm. I cannot help but think that spinal health is important for those with neurological problems, seeing as all the signals/messages have to go that way, but as we are always being told: chronic pain is not necessarily a sign of injury or anything being wrong… Hmm, double hmm.

Lastly, just to note that I have now run out of Ivabradine, the drug that the specialist wanted to try me on to slow my heart rate down to help with POTS symptoms. I am trying to challenge the decision of my GP (this is a family doctor, “general practitioner” for those not in the UK) not to prescribe and have asked the specialist to talk to the GP to see if they can agree something but I have yet to hear anything. I think it did help my heart be a bit calmer in response to standing and I think it made it easier. I have noticed that I have had a few more quite bad and surprising turns from doing quite small things in the house which may be due to stopping that drug. I have noticed my legs are often quite purple when I sitting, though it could just be the warmer weather making things sluggish or that I am noticing more (I tend not to look!). As always, hard to tell.

If you want to know more about POTS and Orthostatic Intolerance for people with ME/CFS in general, I recommend this webinar from the CFIDS Association: http://www.youtube.com/watch?v=5iF30TVLaRE . As well as explaining what is going on in the body there is a lot of info about research that has been done, what can help and details about different drugs. Very comprehensive and perhaps useful to take to your doctor (there is an information sheet to go with it: http://www.cfids.org/webinar/cfsinfo2010.pdf) if they do not know much.

(This is one of many posts about my IBS, to read others, just click on the “IBS” link in the tag cloud on the left…)

A friend gave me some probiotics a few weeks ago called Align. She went to great expense buying it from the US as it has been said to be good for people with ME/CFS. She tried them and they sadly did not agree with her so very kindly passed them on to me to try. I have taken them all, i think it was for 5 weeks. They did not upset me at all or make any difference that i could see with my IBS, which has been pretty stable as long as i stick to my safe foods. I did not take my kefir for most of the time and this change also had little noticeable effect. I did start taking Kefir for the last week or so when i was ill with a virus that made me sick and have an upset stomach as i thought the more good bacteria the better in that situation!

I do think that taking kefir/probiotics is a good thing for me and i will continue to do it, as i hear such good things about them for the immune system, detoxing (the neurotoxic metabolite test which came up positive for me is based on theories of leaky gut type problems in pwME and probiotics are supposed to help, though i have not heard any follow up to the test in terms of published research/treatment advice), and of course IBS symptoms. I just wish i could see evidence for myself!

My IBS has settled down overall, but this is only because i no longer eat gluten, not much dairy, not much resistant starch or very fibrous foods, little fruit and raw salads, etc etc. I am unsure how much help the probiotics have been, though my flare ups are less dramatic now than at the peak of my problems and when i first started the dietary changes so maybe they have helped a bit.

I have been a little skeptical of the resistant starch idea, which my POTS specialist told me about (she also deals with ME patient issues in general) but it really does seem to be the case for me that i cannot digest them well (i explained all about resistant starches here). I can now eat white rice that has been reheated (i have not tried cold foods that have been cooked as this is meant to be worse than when they are warmed up again) but potato seems to be terrible (it is meant to be worse than rice). A few chips from a pub can cause trouble (mainly a lot of discomfort and wind) as they are partly cooked, cooled then reheated/cooked again later. Added to this potato problem is “modified starch” and “potato starch” which are in a LOT of foods and seemingly all gluten free bread/cake/biscuit alternatives. I tested out some gluten free bread recently as the potato flour/starch was quite far down the list and there was no maize flour in it (has the same effect) just to try to widen my diet and it caused all sorts of torture and a couple of nights of quite bad pain through my whole stomach and lower back. I had forgotten how painful my stomach used to be on a regular basis! Potatoes when freshly cooked are no problem at all and are a regular part of my diet but the starches and their digestibility apparently change during the cooling process and when reheated not all of them change back, so to speak.

Other things that are high in resistant starches apparently are beans, like kidney beans etc. I am a vegetarian and I really miss beans. I want some baked beans, preferably on toast, but with mashed potato and a bit of grated cheese would do… but after this week’s experiment i am feeling a bit more cautious. (I have reacted badly to peas and chick peas, though in very small amounts hot chick peas are usually ok. I have not tried other beans/pulses). The other night i felt really sick and my bowel was cramping badly after i had some of the bread with marmite (which was so nice but not worth feeling that bad). I was unsure if it was all a reaction to the bread (and the chips i had the evening before – yes i have been throwing caution to the wind – literally) or if it was also that my system is still not too strong after being so sick ten days ago. I am not usually queasy even when my IBS is bad and am rarely sick, nevertheless it was a definite reaction and it was the second time i ate it, bad reaction both times.

I really want to try to eat gluten and wheat products again as not eating them is so inconvenient more than anything else. I do crave and miss certain things, but mostly i just want to be able to eat out at the pub or a restaurant occasionally, or buy a sandwich… When you rarely go out and there is not much i can go out to “do”, sitting in a quiet place for some food for a short while is one thing that in theory i can do sometimes and something i can do with my partner for a treat but it has become nearly impossible for reasons other than energy and that is even more annoying! I am not sure when i will be able to test out eating gluten properly. I need to be feeling better than this as one reaction to it i have noticed but not tested consistently is that i feel more like a zombie after eating wheat. Hard to test that when i feel so bad all the time anyway. I think i do feel generally better for cutting out the stodgy wheaty foods, many of which (pastry, solid white bread things like pizza base) have long disagreed with me, but it would be nice to have the option sometimes!

I did have a theory that after a few weeks/months of calmer digestion that my system would heal and i would be able to reintroduce more variety of foods and all would largely be well, but after over 8 months (? i have not counted exactly) i do not feel much further along with that process. I have discovered i can eat certain vegetables with no obvious problems, i can reheat white rice, i can handle some spicy foods too, and nuts and seeds though raw and fibrous seem largely ok. I also can eat brown rice based pasta which is nice. All this is great but still quite limited! I need to test out some more but whenever i do it seems to cause a flare up and it never seems like a good time for that when i am struggling with so many other symptoms and am generally so low in energy.

It has taken me a long time to see patterns and believe in cause and effect of eating certain things, like the potato problem, as it is such a complicated issue. Often i eat those risky things when out of the house, then i am unsure if it is the potato (for example) causing the problem or if the exertion of going out has meant that my body did not have the energy/blood flow to digest properly and if i had eaten the same thing quietly at home it might have been ok… see what i mean?

Anyway, i am grateful i can keep it relatively under control day to day even if that means missing out on a lot of food fun and freedom!

Well, i went to Scarborough again, to stay at the lovely Fountain’s Court Holistic Health Hotel. I had a real mixed bag of experience, from euphoria to (brief) misery, but i think it was a LOT more good than bad so i have come home happy.

So firstly, the journeys: they went fine and the disabled assistance was good. I felt a bit wobbly at times but it was easier than previous trips and the two hours on the train went quickly. Even better, i managed to call my “personal chauffeur”, Malcolm (my fave taxi driver) to take me home from the station which was a nice end to the experience and we had a nice chat on the way.

I arrived on Wednesday late afternoon and had a rest and relax, and an acupressure thing called Shen Dao where i sat in a chair and it focussed on upper back neck and shoulders. It did not appear to do much as was very light touch, but it was like a 20 minute meditation really as the sun was shining into the room and i could hear the fountain in the garden and it was deeply relaxing. After eating and resting i felt pretty good and went for an evening walk to the park which is next to the hotel and watched the sun setting behind the trees from a bench. There were canada geese, a black swan, a tern, gulls, pigeons and some fluffy ducklings, as well as lots of people having an evening stroll to watch. It was very peaceful, and i was pleased to feel able to pop out after travelling that day.

Thursday i had a great day. I had a little lie down after breakfast then made myself go into town (i could have had a proper sleep but it was so sunny and i did not want to miss the lovely weather). I headed for the shops as i had yet to see the high street despite two previous visits. I have been in need of some pyjama bottoms for ages (as i do live in them!) but rarely get to shops and thought Scarborough might be good as the shops would be more compact as it is a small town. I went into Debenhams and got a pair that are perfect for just a tenner and it only took a few minutes to find them, try them on and purchase them! I sat on a bench with a sense of satisfaction and acheivement – one of my main aims for the holiday done. I also had a feeling of how unbelievably easy it was to “pop in” and get them, and how it was no big deal in the end (i didn’t feel too dizzy even when the shop assistant told me a long story about her boyfriend while i was paying)… such an easy everyday thing for most people, yet so rare for me for be able to do it. I felt lucky to be feeling well at that moment, but sad that such simple things can be so often impossible.

I had more of a wander along the street and popped into a couple more shops then rested on benches, and then i came to the cliff top and looked at the fantastic view over the sea. There was a lift there down the cliff to the beach, which i was not planning on going to, but the lift itself looked fun as it was really old-fashioned with a turnstyle entrance. Inside it was like a little tram and had long wooden benches.

tram beach

It was 60p and only lasted a few seconds but it was fun anyway. I crossed the road and sat on the beach for a while and watched the donkeys before calling a taxi to take me back to the hotel for lunch.
scarb34 Donk
I had to eat all my meals in the hotel as my diet is so limited there really is nothing i can buy and eat out apart from nut/seed snack bars (which i had with me for emergencies/travelling).

So i had some lunch then had a deep sleep before my reflexology. She has given me reflexology every time i have visited and said my feet seem much less clammy and cold than before and that i look/seem better in myself as well, though she said i look better as i have caught the sun a bit. It is nice that she can tell i am a bit better. My feet still get cold and clammy and it is summer but i do think it is better – the Midodrine must be helping my circulation to my feet. The walk around town probably got it going too!

I talked to other guests when we ate and spent the evening in my room. It was a good day and i felt good.

Friday
Did not sleep so well and had no bowel movement in the morning (the reason i am telling you this will become clear!). I had bad stomach pains and felt really like a zombie. I lay in bed all morning kind of half asleep, did not feel up to eating much so just had some soya yogurt for lunch then some rice cakes and honey later. Went back to bed again then made myself get up and got into the hot tub outside mid afternoon, which did make me feel a bit better/more alive and it was good to feel i was doing something. It had rained really heavily since the evening before and was just easing off to a drizzle which was refreshing while in the warm water. I had another lie down, then had a massage and felt a bit better and ate in the evening. The hotel owner washed all the oils out of my hair and i just rested for the evening, hoping that on my last day i would feel better.

Saturday i woke up and felt ok. I had breakfast and then had a very bad upset stomach and was on the toilet for a couple of hours in a lot of pain. I took some medication (i was prepared for such an event!) and it did stop but i felt absolutely drained of all life and energy. I drank lots of water and mint tea. The hotel owner could only make my lunch between 12.30 and 1pm and i was not ready to eat really but knew it was a long time until eating at 7pm and that i would not feel any better if i didn’t, so she made me a small jacket potato with some grilled halloumi cheese on top as that was what i fancied. It did make me feel a bit better, but i could hardly sit at the table to eat it and went right back to bed again.

I was very disappointed by this point as i felt there was little chance i would make it out of the hotel again. As great as my little walk in the park and Thursday’s trip into town were, i did not want them to be the only good points of the holiday.

I woke up gently and did feel a little stronger. I decided to get washed and dressed and see if that felt like too much effort or if i was ok. I did feel ok, though a little shaky, so i decided to go out again. I got a taxi to the Art Gallery, as i thought it would be small and have lots of seating (there was not so much seating but it was managable). It was a bit disappointing actually, so i decided to walk a little again.

Walking felt quite a lot more difficult than it had on Thursday but i had a few bench rests. I tried to look around a shop but there were no seats and i felt awful so i sat in a cafe and had another mint tea. The music was a bit loud but the seat was so good i stayed a while. When i felt a bit stronger i left and walked down a steep hill past an art gallery that i had seen on a previous visit when it was closed. This time it was open! I went in and had a look around – it was packed with interesting pottery, wood turning, jewellry, art and paintings. It included an exhibition by Yuki Snow, which i was impressed with. I bought some postcards of her work (a picture called Hope which obviously i was drawn to, as i am very interested in the concept, as regular readers will know! Also it features a bird, see my other blog for why that matters to me… click here to see the Hope picture!) and a present for my sister’s birthday, which i was very pleased to find as i was a bit stuck about what to get her. I had a long sit on a low seat, leaing on the counter while the gallery owner wrapped my things and wrote my receipt and that was very welcome! I continued down the hill and sat on the beach again. I stayed there for well over an hour, maybe two, and it was lovely. It was quite cloudy and overcast when i sat down and as i sat there it slowly cleared up and got warmer and warmer. By six thirty i had to leave to get back for my meal and i really didn’t want to as it was beautiful! I was out about 3 hours in total which is a lot for me, but sitting on the beach was so relaxing i though i may as well be there as lying in bed so i just stayed. On thursday i was only out for just over an hour so i was pleased to have been out for so long! I had taken an extra half of a midodrine tablet at 4pm as my previous dose was wearing off and it was just when i needed it, and i think that really helped.

I went back and ate, then went up to my room and packed and got my (new) pyjamas on and got into bed. It was 9pm and i felt better than i had all day, and had a really “itchy feet” restless feeling which i did not recognise from recent years – there was nothing on tv and i did not know what to do. I did not want to make myself feel bad for the journey the next day but also i felt that i would not sleep unless i did something as i actually felt that i had energy to burn! So odd, as i never feel like that… maybe it was the extra midodrine!

So, i got dressed again and went for a walk to the park. I wanted to climb the hill in the park to see the garden at the top which everyone says is beautiful, but the gate was closed. I continued walking and went to the beach!

It was a downhill walk and it felt so easy and natural; i cannot remember feeling that walking felt so normal for a very long time. I thought “this is a short walk” and i could see that this was a short walk for most people, and it felt short to me, despite having not being able to even consider it before.

When i turned the corner onto the beach i saw the cliffs with the castle on the top, bathed in a pink light of the sunset opposite, and it took my breath away. (This picture does not do it justice!)
scarb22
I was so happy that i had been spontaneous and had come down to the beach. The water was a beautiful metallic blue. I walked to the water line and rolled up my trousers as i was filled with the urge to paddle, but on putting a toe on the cold wet sand i thought again. I was concerned that i did not want to ruin feeling so good by freezing my lower legs when i had an uphill walk back again to go, so i played it safe and rolled my trousers down again! (felt a bit silly and hoped no-one was watching me!). I did not walk on the beach but just gently kept moving rather than standing still to keep my blood moving in my legs. I stayed a while until the light was fading and i set off back so that i was not walking through the park in the dark.

scarb28

The hotel owner had told me that there were bats in the park, and i had not seen any on the first evening, but it was darker this time. I could not see any as i walked, and paused on a bench for a minute just in case, as i thought that seeing some bats would really top off the holiday. As soon as i sat down i saw one! There was just one, but it was really big. I first thought it was a bird, but it moved in a batty way and when i looked closely i could see it’s outline more clearly. It was flying around for a while catching midges (i got bitten twice while i watched) then disappeared.

 park

I walked back to the hotel and i was on such a high, truly buzzing with happiness at the lovely evening and how good i felt walking. It was so amazing and i think all the more special as the day was looking so bad up until mid-afternoon: what a contrast! I never would have thought it was possible to feel so good after such a bad start to the day. I wanted to tell someone about it when i got back but everyone was in bed, so i rang my mum and we had a chat for a while, which was really nice. I took a sleeping tablet and although it took a while to kick in i did sleep well, although i woke up early, as as soon as i opened my eyes i remembered the great evening walk and was smiling and excited again and could not get back to sleep! I did go back to sleep for an hour after breakfast and felt ok on the journey which was a relief.

I have not felt great since getting home, my stomach issues have settled down a bit but were making me feel quite queasy the day after i got back, which is not something i feel much usually. I am starting to feel better today though (wednesday) which is pretty good and quick in terms of payback so i am happy about that too.

I think things are slowly changing for me – although it is very hit and miss. For a long time i was not having any times where i felt really good, even for a short time. I was not able to overdo it, as i had no reserves of stamina to draw on (or doing anything was overdoing it!). I feel that i have a bit more to work with these days, a bit more variation, which if carefully managed could really improve my life. I hope it is the Midodrine that has made these last few weeks easier (rather than a random blip) as that means things may continue to slowly continue to improve… I feel i am getting some Hope back.

August will be a busy month with visits from my Mum (my staycation!) and from a good friend who lives in Barcelona. I really hope to have some good energy at the right moments!

Photo677I bought some Kefir “grains” a while ago (see them pictured above). With them you can make a kind of cultured milk which is full of healthy bacteria (like probiotics) and is meant to be very good for you. As i have been having a lot of trouble with my digestive system i thought i would give it a go when someone else with ME told me about it…

I would say it has been a bit of a bumpy ride, but that i am gradually finding a good relationship with my Kefir (well it is a living thing!).

The first problem is that it was quite cold weather when i first got my Kefir grains, and they were small. They need a warm place in the house to be able to “grow” in the milk (it takes a lot longer at cooler temps). An airing cupboard is recommended – we don’t have one. I think the Kefir was not fully active when it first arrived and that with the cool temps meant that nothing much seemed to happen.

Secondly i don’t actually like milk. Not the cow variety anyway. Kefir lives in dairy milk but i don’t like the taste and have long consumed soya milk instead. I eat cheese and used to eat yogurts (have not reintroduced them yet since my strict IBS diet as soya yogurts are so nice!) but hate warm yogurty smells. Milk Kefir is slightly soured/cultured milk and so not to my taste. I have been using soya milk to make it but it does involve keeping it fed in dairy milk every other batch to allow the grains to grow/stay alive as they cannot thrive in soya milk and would eventually die if only used with it. So i have been throwing a lot of cultured cow’s milk away which i don’t really like to do but even when holding my nose i cannot force it down! (I did try).

Good news is that with all that cow’s milk the grains have grown in size and are now happily producing me soya milk kefir on a regular basis. This tastes fine usually (not a lot different to soya milk but it goes thicker a bit like a soya yogurt or pudding – a bit like slime but it slides down!). I do have to be careful not to leave it too long as it can go fizzy which makes it less palatable, although from what i have read it is still fine to consume. The time this takes depends on the temperature, the size of the grain and the amount of milk so it is hard to judge.

I don’t know if it is having any positive effects on me; my IBS symptoms have certainly improved with my dietary changes and i have also been taking other probiotics so who knows. If what i have read online is to be believed Kefir is very good for us so i will carry on for a while and see what happens.

It is a bit of a hassle and i do end up throwing a lot away (both the cow’s milk and any that gets too fizzy etc) but i am also consuming quite a lot with no obvious negative effects. It does create some washing up too but i don’t usually have to do my own so that’s ok!

I am not sure i would recommend Kefir yet, as i feel i have a bit more experimentation to do to get reliably nice Kefir – i feel i must be missing something as i only like the flavour if it is not too fermented – as soon as it starts to separate (the soya milk – i have not let the dairy kefir get that far!) it tastes horrible to me… but i am carrying on for a while longer to see.

When i read about the new urine test for ME in the article in the Telegraph  and saw it partly seems to be related to gut bacteria & probiotics http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html i thought well at least that backs up that Kefir is worth a try. I do not know if this is the “key” to ME as they are claiming, but it may be a factor – we shall see what further research and trials bring… here is what the ME Association say about it: http://www.meassociation.org.uk/content/view/875/161/ 

I have emailed the company to ask for a test, but have not heard back from them (expect they have run out by now!). I thought it may be interesting to know if those processes/problems were part of my illness and to “test the test” and see if it mirrors the severity of illness i think i have, with the result. Will let you know if i ever get my hands on one.

Kefir Info:

This website has A LOT of Kefir info: http://users.chariot.net.au/~dna/kefir-faq.html#soymilk and is a little eccentric too! (kefir in space?)

http://crystalcultures.co.uk/live_cultures.htm describes Kefir:

Milk Kefir

Kefir is such a balanced and nourishing food that Regular use of Kefir can help relieve Most intestinal disorders, Easily digested and It cleanses the intestines Reduce flatulence and create a healthier digestive system it Provides beneficial bacteria and yeast Vitamins and minerals and complete proteins It contributes to a healthy immune system.
Kefir can also help eliminate unhealthy food cravings by making the body more nourished and balanced. Its excellent nutritional content offers healing and health-maintenance benefits to people in every type of condition.

Lactobacillus Caucasus, Leuconostoc, Acetobacter Streptococcus species.
Beneficial yeasts :
Saccharomyces Kefir Torula Kefir
These eliminate destructive pathogenic yeasts in the body by forming a Controlling Agent That Toughens the intestines. The body Then becomes Better at resisting such pathogens as E. coli Salmonella and intestinal parasites. Kefir’s active yeast and bacteria provide more nutritive value than yogurt by digesting some the foods that you eat and by keeping the colon environment clean and healthy. Its cleansing effect on the whole body helps to establish a balanced inner ecosystem for optimum health and longevity. Because the curd size of Kefir is smaller than yogurt, it is also easier to digest, which makes it a particularly excellent, nutritious food for babies, invalids and the elderly, as well as a remedy for digestive disorders.

Getting excited about next week now! I have been working hard preparing my blog for ME Awareness Day (/week/month) on 12th May and am really looking forward to reading what others will be writing. I may have to post a little early (spread the fun out, i say). I have been reading all the posts on the ME Awareness Blog about all the things people all over the world are getting involved in to mark the occasion and feeling the sense of collective action… I also contacted my local ME group who are organising tea parties to say i want to attend/help out at one (as i don’t think i can host one myself) and they said they will let me know if something suitable comes up – so maybe i will meet some new folk too!

My diet for my IBS is going well. Things have continued to be calm and free of drama, except for a blip last Friday, so a couple of days ago i ate some cheese, and today i introduced some wheat flour (pancakes!). So far so good, but don’t want to speak too soon. I know i cannot tolerate large quantities of bread, and pastry and things like pizza base often really upset me, also, oats seemed to cause 4 days of upset the other week… but i think if the pancakes don’t have a noticable reaction when i have been gluten free for some time, then maybe it’s not something i need to worry about too much and i can just carry on eating wheat/gluten in small amounts. I think the main reason things are so much better is the reduction of fibre, and not eating raw fruit & salads (which is also to the same end) but while i am on i thought i would try to find out if i was overly sensitive to likely culprits, I am hoping not!

I have also purchased some Kefir, which someone recommended to me. It is like growing your own yogurt culture, except it is meant to be even better for you than live yogurt or probiotic tablets… so will let you all know how that goes as well! Dr Sarah Myhill talks about it on her website.

I have not been feeling too great in general, i had three things i could have gone out to in the last week and could not go to any of them (not that i usually go to three things in a row!). I am finding the smallest things are really draining me, like when the cleaners came on wednesday and one was really stressed (someone had backed into her car that morning) and just five or ten minutes of listening to her tell me about it tipped me from feeling quite good, to feeling awful the rest of the day, despite going back to bed…

I have managed to raise my dose of Midodrine up to 5x 2.5mg day, where i was on 2x 2.5mg. It has not been too bad, and i am really pleased to have managed it this time, but i wonder if that is dragging me down a bit as my body adjusts… as always, who knows… maybe it’s all the blogs i have been working on – actually that makes sense 😉 let’s hope people read it!

I did manage to go to a local wood on May 3rd –  the bank holiday weekend –  and it was absolutely magic – bluebells, sunshine, birds singing – and it really was just what i needed – would like to go back as soon as i can as it was just lovely!

Here is a picture i took:
photo622

 

 

 

Ahhh – see how relaxing it looks! I wish i could live in there! A real “may day” spring feeling was had by all 🙂

Well, it seems there are several things going on so here’s a little update on each:

Haircut! I managed to go out on Saturday into town by taxi, to get my hair cut. It is so nice to have a proper cut as i have thick short hair it soon grows out of style into a mess, and i cannot be bothered/do not have energy to be styling it every time i get out of bed (two-three times a day!). It had been over 12 weeks since i last had it cut! I had a really nice friendly taxi driver and he took me both ways and my hairdresser was chatty too. This meant i had about two hours of conversation. I felt very lightheaded at times and knew i was overdoing it, but i REALLY enjoyed it, and being sociable 🙂 I coped ok in the salon with the noise, busy atmosphere, lights and music. I was nice to feel i was doing something in the “normal” way.

D-Ribose: RachelCreativeis back on her D-ribose, but after my three week trial i really cannot tell any definitive difference in my symptoms, although there is a lot of other things going on at the same time. I am stuck between wanting to be at my best for my sister’s wedding in 3-4 weeks so taking it just in case it helps even a little, and really not being bothered with it – particularly as i am experimenting with my diet so much. I would rather reintroduce a “new” food than introduce d-ribose and wait to see if it has any effect on my digestive system… so i think i am not going to take it for now.

Midodrine/POTS: It has been two weeks since i started to increase my dose of Midodrine. It has definitely been easier than last time i tried, with less nastly side effects. I think this is mainly due to the times i am taking it: more spaced out through the day… although i am going to try to continue upping the dose gradually a little more yet over the next few weeks. In general i think i am feeling a little stronger on this new dose as well, though my evening head and neck tension/pain has been worse. I hope this will ease off again. I may just be feeling stronger due to my digestive system improvements, who knows…

I am still getting some POTS symptoms, which i was reminded of yesterday when i was driven by my partner to a local small shop (5 minutes away in next village). I just fancied a little trip out of the house and felt ok. I walked up a couple of aisles and got what i wanted, then when standing at the till (there was a short delay as something went wrong with the items going through the till) i found myself really struggling to stand there. I sat on my walking stick seat which helped a little but just this small thing meant i had to go back to bed when i got home as i felt awful. It was partly due to “payback” from going out on Saturday to get my haircut, but still felt very much like the start of a POTS episode… there are definitely times now where i would be fine to go to a shop for ten minutes and pay at the till, but i still have to time it right and am often not as good as i imagine i will be when i actualy do it! It is easy to think i am SO much better when i am sitting at home, but in reality most things are still difficult. Baby steps…

IBS & the diet: The new diet is going well. After the fourth day of diarrhea after eating the oats, i took one Immodium (loperamide) tablet as i could not deal with it any longer and seemed to be losing weight fairly rapidly. After taking the tablet things have been much better and seem to have settled into a good pattern. My stomach is still achy and painful on occasion, but i think getting better every day. I am gradually introducing more things into my diet that “should” not cause any problems and so far so good.

I have eaten soya yogurt products, more ground nuts, fruit and seeds ground and cooked in my morning porridge, oh yes! gluten free porridge (rice and millet), avocado (my first raw fruit!), butternut squash soup, choc soya pudding, cornflakes, seed butter, rice pasta, a small piece of gluten free orange cake 🙂 …. and probably more new stuff… it has involved going to the supermarket and buying “special” products which can be pricier than the usual ones but i would not really have to do this if i was not going gluten free at the same time… after the oats i am being a bit careful about this issue, especially as my Mum finds she cannot eat gluten.

I have still not eaten any gluten since the “oats drama”, nor have i eaten any dairy products except a bit of egg in the cake. I am cooking rice and potato etc fresh and not allowing to cool (due to the potential resistant starch issues.) I am limiting very high fibre foods, or cooking small amounts of them well and mixing into the safe foods. I want to try some cheese at some point, but am not really missing the yogurt now that i am eating the soya version – just as nice.

I also want to try a bit of low fibre gluten/wheat products and see if i have a dramatic reaction like i did with the oats… i think i will wait a bit longer as things have only been going well for a few days. I need to try it out before my sister’s wedding weekend, but also with enough time to recover before going! Otherwise i may not be able to eat any of the wedding food! As a vegetarian, cheese sandwiches are staple fare at such times after all… finger’s crossed the oat thing was just a one-off, and not a sign that gluten in general is no good for me. We shall see…

Back exercise: I have been forgetting to do my back exercise recently, tut tut! I am still trying to do it though and will try harder! I think that because i am having more pain in other areas (shoulders, headaches) i am more focussed on that and don’t feel like lying on the floor and striking the pose… no excuses though!

Going out: I am going to try to go out on Friday early evening for a couple of hours to be sociable with a group of people in a cafe… cross your fingers for me to feel up to it?

ME/CFS Awareness

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