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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…

Well, it’s 2010. Happy New Year to all of you! As most of you have health problems like my own i would like to wish you all a better year in your bodies than last. I am certainly wishing it for myself, as i don’t want to be negative but this last year has been bad on that front. A little improvement would go a long way and just make life a little easier for myself and those around me. I hope we can all see some personal progress and if not, then some medical/research progress would come a close second so we can see some hope of change a-coming…

Here is a candle flame i took a picture of last night, seeing in the new year:

So i woke up this morning to unexpected snow! My partner went out and brought back some beautiful photos:

I desperately wanted to go out and take some myself, but i resisted as i knew it was a bad plan. I took a picture of my redcurrant bush through the window, which looked nice:

There is more snow forecast so i am hoping to take some more another day and maybe leave the house, even if i don’t get far there might be something different to see. It will certainly make things look nicer than usual!

As i contemplate the New Year, my concerns and feelings are much the same as i expect they were last year… how to manage my time and energies to allow me to do things i enjoy and not get bogged down in essential daily activities and medical/health-related appointments (although to actually be able to go to them would be a change on recent form!); what to focus that “excess” energy on for the most benefit to my mental/physical wellbeing; how to express myself creatively; how to spend time with people; how to give my partner a break from my illness and the extra pressure it creates; how to give myself a sense of a break, when i cannot really have one; how to plan for the future when i don’t know whether to assume the best or the worst or something in between…

Most of all i just want to see a bit of improvement, to be able to do a little more, go out a little more, eat more varied foods, be in less pain, feel a little stronger and have some concrete basis for hope that the rest of my life will not be like this, or worse. I would hate to look back on this past year and say that compared to the next it was a good one, but i know it is possible. I am a little scared of that. All i can do is stay strong and as positive as i can and see what happens, i am willing it to be better, i don’t know if that will help but it is all i have got, so that is what i will do. Onwards…

I have started taking two new vitamins.

(I am no expert on these matters and am just trying to work out what is best to take with the information i can gather, at my own risk, so please do your own research/consult your doctor rather than copying what i am doing!)

I have got some sublingual B12 powder (you put under the tongue) which is meant to be better absorbed than tablets. My multivitamin has some B12 in it already but i am sure i would be deficient if i did not take it as my diet does not include any natural sources as far as i can tell (mushrooms and cheese have a bit?). I know of various pwME who take it and some who get regular injections of it which is meant to be even better than taking it orally. I think there have been studies that it can help with some symptoms of ME but i have not the energy to look that up right now, sorry for shabby posting without proper research evidence! Energy is low at the moment so if anyone has any handy info/links on this to hand, please do comment below!

I am also taking Vitamin D (in the form of D3). This is a bit more risky as it is a fat soluble vitamin. In theory you could take too much as the body may not get rid of any excess – it cannot just be processed and passed out in urine like, for example, any vitamin C that is not absorbed. I am only taking the RDA and seeing as i generally do not go outside or rarely even see the day through the window these days, i think that should be ok. (I read if you are getting vitamin D through sun exposure the body knows when it has made/stored enough so you don’t overdose, just in case you were worried!). There seems to be growing evidence that many of us are vitamin D deficient (i mean the population in general, not just pwME; particularly in northern climates where sun exposure is limited and people are very sun-cautious/covered up even when they are out in it) and that it can play a role in many illnesses (MS, cancers…). My osteopath said that he thought i should consider it and that a doctor friend of his had talked to him about it and suggested that the risk of cancer through sun exposure (not burning, just being exposed little and often) was much less than through vitamin D deficiency and that people needed to change their focus and attitudes to the sun. He also said that there seemed to be emerging evidence of deficiency having a role in many illnesses.

here is one article about it: http://www.fiikus.net/?vitamind

here is a long factsheet that is a bit scientifically written but that highlights some useful things: http://ods.od.nih.gov/factsheets/vitamind.asp. It mentions bone health for people who are inactive, the likely need for supplementation in people who are housebound and who are vegetarian (er, me on all 3 counts!), issues of toxicity and other possible health benefits and illnesses that can be affected by a lack of vitamin D. My grandmother has had osteoporosis since she was relatively young so i am also aware it may be something i am prone to, though i do not know if it runs strongly in families or not. Apparently when you don’t jump up and down much or walk strongly about, that lack of impact on the bones can lead to them being thinner. That jarring action leads them to build themselves up and be stronger for that kind of action in the future. As i creep/shuffle about gently in general i think i am not getting that impact.

I will take it all winter and maybe not so much in the summer if i can sit outside more regularly as i tried to do this year. I read somewhere (sorry, again i know not where – must try to be more organised!) that just ten – twenty minutes sitting outside in gentle sunshine with some skin exposed (face and arms or legs) is enough for your daily dose, which sounds easy, but in this country (the UK) the days when this is possible even during summer not as frequent as you would think. I tried to seize the moment as much as possible this summer and did grab some rays even when the day was generally cloudy due to my flexibility of being at home all day, but still did not manage more than one in three days during the height of summer. For people who work it is even harder i should think! Also if you have darker skin the production of vitamin D is slower than for paler skins, so dark-skinned people living in the northern hemisphere are even more likely to be deficient.

Obviously the best thing regarding all supplements would be to have thorough blood tests done to see which ones i really am deficient in, but as this seems to be unavailable on the NHS for most vitamins/minerals, we are left guessing. As my diet has been more restricted this year and my digestion has also not been functioning well before this due to very bad IBS symptoms i think i do need to take supplements. If i have no major deficiencies it is one less thing preventing my body from working as well as it could…

Many apologies for bad blogging – for not backing up my assertions with lots of links to research – i just wanted to get some blogging done but am not up to being on the computer long enough to do a proper job…

I was so pleased to read this letter in response to the goverment’s paltry and misleading/inaccurate response to an e-petition that i signed, asking that someone appropriate from the government attend the Invest in ME conference and, er, maybe learn something:

http://meagenda.wordpress.com/2009/07/06/invest-in-me-statement-and-letter-to-prime-minister-e-petition/

well put!

(but when will they start to listen…)

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.

(This is one of my “Blogging for ME Awareness Day” posts – see the rest of my posts for this event here, and what others are writing/doing here!)

I was reading this great blog (as part of Blogging Against Disablism Day (BADD) click link to read more!) and saw an excellent paragraph in it, which was actually taken from here:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

This really made me smile and pins down something i have been bothered about in the back of my mind for some time: Why does it annoy me so much when people say “You are looking well”, or “You sound good” or whatever. I always feel a bit guilty about feeling so prickled by it, when they simply want me to be feeling well and to be improving with all their hearts and are just expressing it… but it feels like it is just a conversation to make them feel better about it; to let them off the hook; to avoid facing the truths about my illness. When i try to explain that they have simply caught me at a good moment and that in general nothing has changed, i get this look, as if to say “Why are you denying improvement? Don’t you want to get well? Be grateful for what good times you have!”

(I must say i am more tolerant of this when it comes from people very close to me who do know largely what my life is like or who see/speak to me regularly, as maybe i do sound a bit better than the last time, but i am safe in the knowledge that they know this does not mean anything more than that, that right now i can speak, but afterwards i will be exhausted and i may not be able to…)

I may look well because i have spent all the day up to this point (and probably yesterday too) making an effort to be clean, have had my hair washed, to have sloughed all the unsightly dry flaky skin off my face and moisturised, to have got out my nice clothes, rested effectively and eaten sensibly and taken a sleeping tablet, a painkiller and all the other things that i need in order to ensure i can function for this occasion of seeing you. I may even feel quite good after all this planning and preparation and be enjoying myself in this rare foray into your world, but like Cinderella, the mirage will soon fade, and i will feel so ill and have so many extra symptoms over the next few days in “payback” that i really cannot just forget this and enjoy “looking so well”. It is not your fault, of course, but how i look at the moment is irrelevant to the bigger picture. “Looking well” can sometimes feel like a curse and a barrier to understanding.

The other common exclamation is “Isn’t it lovely weather, that must really help you!” It helps me in the same way it helps anyone else, and yes, it is nice now that spring has come that i can sit in the back yard and get some fresh air and sunshine (occasionally) and have a change of the usual four walls to some al fresco four walls with birdsong and the like, but it is said to me as if it will actually make me well… My illness is not caused by depression, i actually don’t think it is perpetuated by depression (it just makes it harder to live with). To suggest that all i need is some sunshine for my severe and chronic health condition to improve is really irritating, and again i feel so guilty for being grumpy about it and usually just say, “oh yes it is nice to have nice weather” (and think “but i feel as ill as ever)”.

So now you are reading this and thinking “well i didn’t mean anything by it, what the hell am i supposed to say then? Nothing?” No of course not, but please, just ASK how i am. If you must, you can ask if the sunshine helps me(but don’t expect a sunny answer to that one – my patience is wearing thinner and thinner on this issue).

When you do ask me how i am, of course, that opens up a whole new set of issues: Do you really what to know how i am? Do you want details? Do you want to understand what my life is actually like? Or do you want a “Fine thanks” or a “Not bad today” with no details? It is hard for me to know. Even if i know you really do care and want to engage with it, how can i explain how i am? How can i quantify my wellness or illness in a way you can understand? Sometimes i can say i am “better” but do you know what that means? Do you think i am on the way to getting properly better? Or do you know i mean a-tiny-bit-that-only-a-chronically-ill-person-would-notice-as-an-improvement-and-it-could-all-change-in-the-next-five-minutes-better?

I find when asked “how are you?” these days, i just say “i am ok right now thanks” or something along those lines, because, of course i have been better, and i have inevitably been a lot worse (well i am having a conversation, so evidently not SO bad) so everything else is just in between these two… how i am changes minute by minute, hour by hour and day by day but also not a lot really changes.

So i appreciate you asking, and that you do care, but know that these questions are so loaded for me, and there is a lot more going on behind my reply…

I am back from my week’s holiday and i can say it was a successful trip 🙂

sunset

We went to the Holy Island of Lindisfarne, which is right up in the far North East of England, just a few miles from the the Scottish Border. It is literally an island and is cut off from the mainland by the tide twice a day. It was nice to feel cut off from the rest of the world by the tide, and also by the lack of internet access. It felt like a retreat from my usual life and a chance to do things that i do not usually get to do.

Things i wanted from the week were:

  1. to spend more time outdoors and feel part of the landscape, not just be a “tourist” passing by in a car, as i often do these days
  2. to experience being outside at different times of day, as i usually only go out in the middle of the day (if at all!)
  3. to take some good photos
  4. to have some fun!
  5. to go on a pub crawl! (As there are at least three pubs in the very small village).
  6. to learn more about the Lindisfarne gospels by going to the Lindisfarne Centre on the island
  7. to do creative things (painting/drawing etc)

So, which ones did i manage?

Well, i did most of them…  i did not get to the Lindisfarne Centre, though i did read a bit about the Gospels and the history of the Island in books that were in the cottage we stayed in. I did not manage to do much creativity either – i wrote one haiku (see below), but there was not energy or time for other bigger creative activities after walking about the island a bit and going out for occasional pub meals, and a trip up to Scotland to a craft centre and tiny fishing village and sleeping and resting between each thing. Also i did not manage a “pub crawl” as such, though i did go into several different ones. Seeing as i don’t (can’t) drink alcohol it would not have been very authentic anyway…

I was really pleased to do some walking around the village and also along the shoreline and harbour. The shops and pubs were just metres from the cottage, which made little trips out to them manageable. I walked quite far on a couple of occasions and it was so nice to feel the ground under my feet, feel my body “working”, see the lovely views, take some photos and feel connected to the landscape, to be in it and part of it, in a way that only “walking it” can do for me.

I did not always feel great by the time i got back and i think i am still recovering from the longest walk i did on Thursday, and it is now Sunday! But it was so worth it and i had to seize the opportunity while i was in that beautiful place. It seems that, try as i might to change, the things that give me most joy are still the things i used to enjoy as a “well” person. It was a treat to be able to do it, but i wish i could find something to replace that with for it’s therapeutic & mood enhancing benefits, enjoyment and buzz that i could do almost every day, as i used to go for a walk all the time.

On that big walk i felt well and my body behaved itself and i did not feel any POTS symptoms really, despite being upright (with regular sitting rests on benches) for about an hour. I often stood still for taking pictures and it was so nice to feel good, reasonably strong and able. Although i have felt that i overdid it and am still recovering energy-wise, there would be no way i could have managed that without the POTS medication, as i was rarely able to walk for more than five minutes before and any movements were slow and so much effort. I now find that sometimes, if i pick the best time of day and have had enough rest etc etc, i can move in quite a normal way, get up from a chair quite quickly and walk at a reasonable speed, at least for a short time. That is really nice, and gives me some hope for having some nice wanders about this summer. I miss wandering!

viewfromhill

I climbed(!) a small hill to take this (and many other) pictures. All these photos are just using my phone as i have not got my films developed yet. I hope there will be some better ones to come!

One of the main highlights of the week for me was when we went out in the evening and sat on a bench overlooking the castle in the dark. We took the torch from the cottage which was useful as there was only one street light on the way! It was very cold so we wrapped up well. It was really quiet and there was no-one around. We sat on the bench and looked out to small lights on the water, out to sea and along the coastline. There was a bunch of flowers tied to the bench and the cellophane rustled in the breeze and we could hear the water lapping gently at the shore just a few feet in front of us (though we could not see it!). The best bit was the castle. We could not see it, but every minute or so it was lit up from behind by the light of a lighthouse which was out of sight behind the castle mound. The light was green and not very bright and we could just make out the outline of the castle before it disappeared back into the darkness. I wrote a Haiku about it:

Illuminated

Dark castle mound: back-lit by

Rotating green light

Obviously i could not take a picture of it, as it was far too dark but now the image is cemented into my mind. You will have to imagine it too!

After the success of the evening walk, a few days later we tried a dawn walk. I set my alarm for half past six and out we went back to the same area. My body was not quite so happy about that and the dawn was grey and not very inspiring! I was hoping for a glorious sunrise but you can’t win them all… here is one picture i took on my phone once it got light enough that morning just before going (crawling zombie-like) back to the cottage for some breakfast then back to bed.

holy-island

 It was often cloudy during the holiday, which was a disappointment, as it limited when i could take good pictures but the sun did come out on my big walk on Thursday so i can’t wait to get the films developed and see what comes out!

I feel really happy that i managed to do so much while away, and coped with the awful bed and unsupportive chairs and being away from all my other home comforts quite well too. It took a little while to relax into it but i really feel better for having a change of scenry and a break from the usual routines. Travelling anywhere is such a challenge and it doesn’t always work out very well, so i am so pleased this was a success!

Well, Happy New Year to everyone reading my blog!

It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!

Symptoms improved include:

Firstly and importantly, i  have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!

Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.

Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do 😉

Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)

Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.

Recovery period – i have been recovering more quickly than i would expect from such “big” things.

I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.

I often have more stamina for talking to people, going out, being online or reading etc.

Things i am not sure if improved yet:

Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).

Things i have been doing over Christmas and New Year…

Travelled for seven hours door to door to stay with my Mum: this was a trauma and i NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.

I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!

I went out for lunch with my uncle, mum and sister.

I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!

A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!

On New Year’s Eve we drove to the coast to a lighthouse and i walked a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.

Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop 😉

Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)

I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes  possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!

The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more in terms of a good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!

So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!

The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.

The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…

Well, it seems as though i may have “POTS” (Postural Orthostatic Tachycardia Syndrome). There is a good website here that explains what it is, click on the links under “POTS place” on the left hand side…

I have been taking part in a research study about CFS/ME and Orthostatic Intolerance and have been to the hospital three times in the last month where i have been monitored (heart rate, blood flow, pressure etc) while lying down for ten minutes, then standing for two minutes. It seems that when i stand, my heart beats very fast to try to deal with becoming upright, which it seems my body does not do very well. The specialist asked me if i would be prepared to see her as a patient as there a number of drugs that she can try to manage the problem (it can’t be “fixed” as it is a problem of my autonomic nervous system, as CFS/ME is as well) and maybe (maybe) make me feel a bit better… which would be nice as i have been feeling pretty awful recently and it feels as if things have been just getting gradually worse and worse over the last couple of years or more that i have been off work.

I have been having problems with dizziness and feeling lightheaded and weak, particularly when i stand up, but at other times too (sometimes when sitting still), since i was still at work, and it has been a major problem for a long time. I find it very hard to stand for any length of time, which rules out things like waiting at a bus stop (even if there is a “seat” to perch on as you are still almost standing), i can’t queue in shops and even walking in general is pretty hard. If i bring on a “funny turn” in this way, i have to get home and to bed as soon as possible as i feel so awful, just lose all power and energy. Even when i don’t feel dizzy as such, i find it very tiring and hard work, and feel generally weak and lightheaded. I find it hard (and often impossible) to go anywhere or do anything much, basically. My doctor advised me to drink isotonic drinks and eat more salt, and said she didn’t think i needed to see a specialist as although my blood pressure drops a bit when i stand, she thought it was mild… “I just think your ME is quite bad at the moment”. Hmm yes… but why, Doc?

So that is partly why i signed up for the research study, and now i am glad i did, but i also feel that i should not have had to… apparently this condition is common in people with ME, so why has it taken so long for someone to notice? Maybe as it is difficult to treat and not life threatening they don’t bother… all the same it seems it can be very debilitating and any improvement that can be made would be most welcome. I don’t like taking medication and am a little concerned about what i will be taking, and if i will take it permanently, but life has been very limited and anything that can make everyday things a bit more possible or less exhausting would be nice. I am trying not to get my hopes up, of course…

In ten years of illness, this is the first time a physical test has come back as abnormal. I wish i had had this early on so that i would have had something to wave at the people who said it was all psychological (the insurance company, in particular, i am looking forward to telling them!). Maybe i am getting ahead of myself, i have no piece of paper to wave or even appointment with the specialist as yet! But in the couple of minutes she spent with me she seemed to be speaking as if she thinks i have it. Reading about it certainly rings true, especially now that i know what my heart is doing. She asked me if i ever noticed my heart beating fast when i stand up, i said no! It is not pounding away heavily or anything, just faster, and who knows what is normal without actually focussing on it. I have noticed it, but mostly when lying down, i think just because it is quiet, maybe the pressure on my pulse of the pillow etc etc. maybe it takes a while to calm down/recover to a normal rate after lying down…

Since i got home from the hospital, i stood up against the wall and took my pulse for 15 seconds after one minute of standing: 31 beats (124 beats/min), then i took it after 5 minutes and it was still 29 beats (116), so it obviously does not just happen when i first stand, but continues for a while… i rarely can stand for much longer than that anyway! Over 120 beats per minute is tachycardic apparently, so when i initially stand it is over that, over 100 beats per minute is still seen as abnormal.  Even though i knew there was something wrong, it was quite a shock to know that my heart is doing that. Now i know it is, it seems so obvious and i notice it a lot, although i am trying to ignore it!

I am a little confused about the diagnosis, as the symptoms, likely causes etc are so similar to ME, that there must be connections. Do i even have CFS/ME? I think so, as i am not sure that i have had POTS for the last ten years… it has maybe just developed over time or become bad enough to qualify as “POTS” but maybe have had issues in this department throughout the illness? Who knows. The lightheadedness and dizziness i think has never been as bad before as in the last couple of years, but has been present at times. This website speaks a bit about the connection…

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system’s regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

Well, who knows… i look forward to having some questions answered when i get my appointment through. I hope it is soon.

Maybe this “new evidence” will help my DLA appeal as well… fingers crossed!

ME/CFS Awareness

ME/CFS Awareness

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