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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 just remembered/realised i can make the snow change direction and speed with my mouse 
Wish it would snow in the real world but this is fun for now!!
(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!
Last week I had to move out of our house while two rooms were plastered. To stay would have meant being shut in one room with my partner (who would be trying to work from home and deal with the workmen) and the dog from 8am all day for at least three days. That would mean no bed (the sofa is not actually comfy to lie on for any length of time) and i cannot last a day without lying down, usually twice with at least an hour’s proper sleep… and that is when i have not woken up til about 10am, never mind before 8. Add to that the mess, noise and dust and you can imagine how relaxed that would be. It was not going to work. So i abandoned ship which helped my partner who then had one less thing to worry about/deal with.
A good friend of mine agreed to take me in and i went to stay with her. I took a big batch of veggie stew and microwave rice, microwave porridge, various snack foods etc so that i would not have to depend on her (she would be out at work all day and then busy with her baby anyway, so did not need to be looking after me too). I ended up staying from Sunday evening until Thursday afternoon and i really enjoyed the change of scenery.
I was mostly on my own and apart from the Monday just used my energy and time resting, having baths (daily due to itching issues, that will be another blog post, (maybe) coming soon!), making food etc. It was nice not to be at home where there are always more things to do. I felt more relaxed i think as I could not get caught up in little household chores or other stuff that tends to creep into a day at home. I was barely on the computer (i did not take mine) and watched no TV (there wasn’t one). It was nice and quiet.
The Monday I actually went into town and to THREE shops (and a cafe for a rest mid-way). Yes, what was i thinking? I rested in bed before and after the trip and expected it to be a bit traumatic, but actually it was a pretty good experience. It was something i had been really wanting to do for months but not feeling able. I really could have done with someone to help me carry my purchases as my arms/neck/shoulders get very tired carrying the smallest thing for any time and it was a struggle at times, but as i was very careful in the days before and afterwards i did not suffer too much for my exertion, just extra aches and pains really. I sat down when i could and asked for help as much as possible in the shops and people were very helpful. The great thing was actually being able to go and buy some undies for myself. There are a lot of things that are ok to have someone else buy for you, or to buy online, but clothes are tricky. I really wanted to go and choose my own vest tops and knickers, especially as my skin is so sensitive and itchy i wanted to feel them and see how scratchy/bulky the seams were, and so on.
I also bought a pair of jeans! They are not a perfect fit so i will need a belt with them (my hip to waist ratio is a little ridiculous so this is expected) but i am so pleased to have found some as who knows when i will next be able to go clothes shopping and my existing ones seem to be getting a bit thin in places (you only really need one pair of jeans when you live in PJs, but it is so distressing when your jeans rip and you have no replacement at the ready).
I really think it is about my third visit to a clothes shop this year, i cannot actually remember the last time so it may be even less. It has certainly been a while and it was nice to be out and about, “gal about town”, watching and seeing how life goes on usually without me seeing it. A lot had changed in the two streets i always go to and my memory of where things were was a bit wrong! I still feel like a visitor in this city after 8 or more years of living here. The last time i made it into town was the August Bank Holiday when i went to the art gallery, which was a great day and i am still remembering it fondly!
My friend lives nearer town than i do so it was really easy to get in and out and also she lives near some local shops so i went out briefly for some fresh air on other days and sat on a bench, went to a cafe and a shop as well and it was so much less effort to have it all right on the doorstep. It made me think about what things might be important in choosing where to live if we move house. It is interesting to try out other people’s houses!
Unfortunately on the Thursday afternoon once i got home i felt surprisingly ill and thought maybe i had overdone it more than i thought, so i spent the afternoon in bed. I got up for the evening but kept having bad dizzy spells even when just sitting quietly which is rare now that i am on medication for my POTS. I felt pretty bad but thought it was just the usual payback. I went to bed and slept a bit before waking up and feeling queasy. At 2.30am i started to be sick and this continued until there was nothing left in me at about 5am. There were breaks in between bouts but i felt so bad that i could barely move or lie down as i felt as if i could be imminently sick at all times. It was not a fun night. I eventually got a couple of hours sleep at about 8am but barely ate on friday (even drinking water was hard) and still had little appetite all weekend, though i gradually built up the amounts i ate and no longer felt that i would be sick.
During that night i was obviously up and down to the bathroom and think i was having POTS symptoms as well. My heart was beating very fast and my arms and legs kept getting pins and needles. The next day i did not take my POTS medication until i had eaten something. I really did not want to put anything in my stomach in case it triggered more sickness. So on top of the weakness and dizziness of being so ill i also had POTS symptoms, all in all it was BAD. I should have taken my blood pressure just to see how bad it was, but was too ill to think about that until later!
So that’s what you get for going out into the world… exposure to viruses! I kind of expected it, i just hope it does not knock me back for too long. From experience this year these things seem to really take their toll long-term. I hope to have some energy by Christmas, if only to digest some seasonal foods! At least i have lost a few pounds through all this, so i don’t have to worry about eating myself out of my new jeans 
It is now Tuesday and i do feel much more back to my “normal”, if not very lively. I am still a bit achy (being sick uses a lot more muscles than you would think!) but pleased it only lasted as long as it did. After being away from home, then out of action i do feel i have various things to catch up on, not least the blogging i put off last week to save energy for my trip away from home! Ahh well, hardly that important… you may get some old news at some point!
…but so little energy that i cannot manage any of it.
People, we have a back log!
I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:
Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!
I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).
I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.
I also had a big dilemma about whether to take my walking stick…
I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.
Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.
It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!
I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?
Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?
Am i the only one who even thinks about this stuff?
The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.
I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!
To all my lovely friends and family,
As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative:
I would like to propose that instead of giving gifts we just exchange cards.
If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.
If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!
I hope this is ok with everyone, thanks for your understanding,
Ashy xx
My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid.
The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/ (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean.
ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)
I decided during the last couple of weeks i needed more than just massage to deal with my wreck of a body – the last couple of months i have had much more tense and more painful muscles all over and my upper back became so uncomfortable recently that i had to go to lie in bed in the day just to rest it, as there was no sitting position i could find that worked, and also i had to only lie on my back in bed as being on my sides was became too uncomfortable after just a few minutes… not very helpful when i already have enough problems being comfortable in bed and sleeping well.
I found an Osteopath online who was close enough that taxis would not cost too much, read his website and sent him an email. He sent a lovely one back and his charges were less than i feared, so i gave him a try today.
He was great. He says he doesn’t know if he can help me much at all as osteos rely on the body’s natural ability to heal in order to get better, once they remove whatever is blocking that. He says my regulating systems are so all over the place (the autonomic nervous system which causes so many of my more severe symptoms is very key to this) that he has no idea how it will respond. We are giving it a go anyway and i am sure he will tell me if there is no point.
He had really researched POTS and seemed to know a lot about ME and the autonomic nervous system and i was impressed by his attention to detail and enjoyed talking to him. I think i like him and will enjoy my visits which is important too.
We are focussing on making my back more comfortable/less painful, but he also says my lower back is BAD (i thought it was fine but he says the pain signals must have been switched off as it is soooo baaaad!) and that could be affecting my pelvic pain/bladder/ibs etc so he will try to help that too. My head apparently is all baaaad and solid as a rock, but i knew that, as it is always tense and painful. He spent 2 hours with me, despite me being late (taxi couldn’t find our house… again) and the appointment was only for 90 mins. I felt very spaced out and dreamy afterwards and my back does feel different, if still sore! He was very gentle – it was pure Cranial Osteopathy which is basically minute movements, mostly you can’t tell anything is happening, though he kept making discouraging noises like for him it was all very dramatic and he kept finding more bad things wrong with me! It was quite funny!
He has leant me a support pillow (memory foam?) to “try before i buy” as i was considering it but wanted to test to see if right for me before shelling out mega bucks - and i lay on it this afternoon and it was like a revelation! I could actually feel, when on my back or side, that my neck was perfectly straight and there was no pressure on it! i am sure it will help my neck and comfort levels when sleeping so he ain’t seeing it again I think the amount of time i spend in bed it could really be affecting my neck tension and may help. Hurray!
I will see how it is after i have actually slept on it, as this afternoon i collapsed into bed in a zombie state for three hours when i got home, but couldn’t sleep as such; it was a pleasant waking dream-like state. I actually felt like i was on drugs when in the taxi home; my speech was slowed and an effort but it seemed really funny to me! The taxi driver thought i was being very odd, i could tell, but i thought that was funny too! We had a surreal conversation about the weather…
The Osteopath also recommended a very expensive week-long probiotic treatment, which i will look up online, but may not jump at that quite so readily! Will see how things go…
