I've been away for a while because I have:
a. been busy
b. not felt like writing/blogging
c. not had the energy to do 'b' because of 'a'
I had an online friend come to stay for a couple of weeks from abroad. It was lovely to meet her and spend time getting to know her in person (we have talked A LOT online), but it was really difficult for me to host someone and I am still recovering. I was worried about this, but then I kinda threw caution to the wind, so to speak.
I have been really battling increased pain a lot recently. I am trying hard not to rely on painkillers and using other methods to help me. I also have been struggling to sleep well, which doesn't help. Anyway, here's my update:
Food Allergies and Intolerances
After I wrote my last post, I continued with the elmination diet. I found that in addition to reacting to the allium family (onion, garlic, leek, chives etc), I also can add broccoli, dark chocolate, and possibly lentils to my list. I need to retest lentils at some point. As I was a fan of broccoli, I was eating it a lot - and thus it was affecting a lot of my main meals. I am supposedly also sensitive to cauliflower (from previous testing), but I hardly eat it anyway so I guess it's one of those things you don't notice easily. With dark chocolate, I again avoid it, but if a wee bit is in something, I can get away with it.
The allium family are my main allegen. I think the problem was that although I knew this, I was not being careful enough about it. I was not avoiding garlic, as I believed onion issues were worse (which they were), but somehow I also seem to have become very reactive to the rest of that family. For example, I made a vegetable/vegan stew and used a tiny (and I mean tiny) amount of vegan stock powder in the overall dish. As soon as I ate it, I started reacting. No more veggie stock for me. Finding stock that does not have onion in it is so difficult...
Eating no onion and no garlic is a nightmare. When eating out or buying a ready made item from Marks and Spencer, everything has some of one of these things in it - even if no onion or garlic, sometimes people put chives in things or spring onion. I went around M&S with my mum and managed to find ONE ready made item I could eat - a salad with smoked mackerel in it. Everything else had onion or garlic in it! The result of this is that I have to eat very plainly and cook a lot from scratch. The problem with that is that I am not well enough to cook from scratch all the time. If I do spend my precious energy on cooking, then I can't get on with anything else as it takes all my energy for that day. As a result, I have found my business life is suffering. I need to use all my energy to focus on getting on with my work and setting up 2 businesses.
The gluten is also an issue for me, but not in an allergy way. It affects endometriosis symptoms I have - very badly. So I am still trialling gluten free to see if in the long term it helps me to control those symptoms. At the moment it's made them far more bearable, although I am still having to take medication and use a TENS machine to help me cope with them... before I was not even able to get them under control at all so to have this improvement feels amazing.
Mast Cell Issues
One of the things I have found incredibly useful from all my mast cell research is finding out that there is a children's liquid form of Benadryl. I know this might be obvious to some people, but as I don't have any little people in my life, I was unaware. The premise behind using it as an adult is that if you are exposed to an allergen you can quickly take it and it gets to work straight away as it is a liquid form. I bought two bottles and now keep one in my bag at all times when I go out. So far I have used it about 4 times. One example being: I was eating out at a restaurant and I started to feel the allergy rearing up, when I examined my food really carefully, I noticed what I thought was parsley stalk chopped up into tiny bits was actually chives! I immediately took a dose of Benadryl. Although I still don't feel great with taking the Benadryl (as it is drowsy inducing), it really dampens the response down so that I can still function enough without collapsing.
As part of Mast Cell Activation treatment one also can take Quercetin. I started to take it and have found that on the whole it makes a difference to how I feel. I read on Phoenix Rising that other people have taken it and some of them found it very helpful.
Mast Cell treatment seems to stem around blocking histamines 1 and 2 (h1 and h2) and stabilising the mast cells.
H1 can be blocked with an h1 receptor antagonist such as an antihistamine
H2 can be blocked with an h2 receptor antagonist - http://en.wikipedia.org/wiki/H2_antagonist - a popular one being Ranitidine, which is normally used to treat excess stomach acid/heartburn.
Mast Cell Stabiliser - Cromolyn Sodium (but some people use Quercetin or another natural product instead)
Plus -> Slow-release Vitamin C (increased degradation of histamine; inhibition of mast cell degranulation; not more than 750 mg/day)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/table/T5/
Earning Money With ME/CFS and Other Diseases
The above has been a constant problem for me. Since I got sick as a young child, my whole working life has been blighted by M.E. and then additional diseases that decided to jump along for the ride. It's really difficult to earn money or dare I say, have a career, when you are so ill all the time. The problem I have found is that in the past, if I improved a bit, I felt under a lot of pressure to go into the workforce. It's almost as if people forgot what's actually wrong with me and viewed me in the same light as everyone else - so I was being expected to do what healthy people do, when I was not healthy at all.
What happened in the long run is that I then ended up adding another few diseases to my list - as if my body couldn't cope with the added pressure to manage getting up and out and working, so it just broke down a bit more. By the time I got to 2008/09 I was so ill that there seemed no hope of me ever working again. I think that one of my fears has always been, since then, that if I do go back to work, am I going to end up back at that point (or worse) again and so reliant on others. Realistically, as my parents are getting older, they are less able to help me when I am in need of care and they also do not want to be put in that position by me... which I totally understand, but have a hard time processing mentally. It's not like I ever intended to put them in that position, but now I think there is a feeling that if I push myself too much, the result will be worsening of my symptoms/ability level and as I am already quite ill, any worse means I need a lot of care. So, by default, it seems as if I am making myself intentionally sicker by putting myself at risk through attempting to work.
The upshot of all these years of being working age, but struggling to find any way to work, has been that I have had a lot of time to think and try to come up with money making schemes. Most of the people I know who are chronically sick have a better chance of earning money if they are their own boss. It's not that it's easier - because in many worse it's actually harder as you don't get a guaranteed income each month and have to find clients/customers or whoever it is that will be generating your income; however, being able to work from home/bed, working somewhat at your own pace and not having to explain yourself all the time is very liberating. I know that in my case, because I live in a rural area, I have to battle with not just getting myself up/dressed/fed ready to go to work, but also get myself to work and that involves long commutes. I used to find that by the time I arrived at work, it was as if I had done a full day's work already. Long term this is unsustainable. With running your own business, there are many of the things that are involved with working in an office or whatever, but you as the sole trader are able to decide how to approach them and when to do them. You can choose whether or not to take on a job or sell an item to someone. If you are feeling your best at 5pm then you can work then instead of working at 10 am. For me, the ability to harness my best moments of the day would be really helpful as they are too erratic to be predictable and yet, if I do harness them when they come, I find I get a lot done (probably just as much as someone who sits in an office for hours each day).
After much thought about the above, I decided that I wanted to experiment with trying to make life work for me - as in, to be able to generate income despite being sick. I realised that I could do with more skills/honing the skills I do have so that I might be able to use them in self-employment and this is what I have been doing the past year or so: working towards setting up and opening 2 or 3 businesses. I am still working on it - as seems to be the case with these types of thing, it has taken me a lot longer than I thought it would... things get pushed back and when I have been too ill to do anything, I have just had to let it sit while I recover enough to have another stab at it. I am hoping that eventually by this time next year I might have 2 or 3 things going and might be in a better place financially than I am now.
Glad you were able to meet your online friend at last, not glad you have been suffering since but then I guess that is to be expected! I really do worry about work and the future. Right now I am too ill to be doing anything but I hope I will one day get to a point health wise where I can do something, but what I could do is what causes me stress! It is a difficult one especially when everyday is different.
ReplyDeleteHi Hayley!
DeleteYes, it is so hard - the whole work/career thing. I think in the past I have deluded myself into thinking I can do what everyone else is doing... partly because of my nature: I am one of those people who refuses to give up and partly because we kinda need to be able to do something to earn money at some point in our lives... to move on... and so there's this half-half thing where I am trying, but at the back of my mind I know that's it's probably either unrealistic and/or downright damaging.
What I find difficult is that when I go onto Phoenix Rising and read about other people with M.E. (which I generally find really helpful, especially when researching treatment ideas). I seem them talking about work/career and coming to the same conclusions that I try to supress!! That working, in general, makes people with M.E. a lot worse and over time people who work tend to do what I have done, which is get progressively worse every time they have to give up work.
I think the tendency is that if one is able to get oneself better enough to think one can manage work, one then feels they should... when maybe we shouldn't... I just don't like being so dependent on other people to finance my existence and would like to be able to earn some money for myself.
So far from what I have seen you seem to be a creative soul like myself; if you get to the point where you are well enough to do something, try and do something from home or freelance... anything you can be your own boss/have some control. This means you can dictate when/where/how you work. Having worked in an office, even working part time is impossible for me now... I just don't have enough predictibility of how I will be, or energy, to be able to go into a job repeatedly... the most I can manage is an hour here and an hour there and I never know when that will be... I am running my 'empire' from my bed with a laptop and sometimes my good moment is late at night, which doesn't work with a normal job.
Thanks for reading, commenting and understanding. xx
I'm sorry about the onions and garlic! For 1.5 years, I've been trying to figure out if any eliminations help me and, so far, nothing has. I barely eat anything now, i never leave my house and am subsisting on plain rice and veg and oats and turkey. I'm experimenting with a low histamine diet because, of course, I won't take the drugs. What reaction do you have to alliums and gluten?
ReplyDeleteAnd I can't even talk about income. Pure terror. I'm waiting for my retirement savings to run out- can't get disability, can't work - then what do we do? How many people with ME are homeless on the streets? :(
It’s so hard isn’t it? I think it’s hard to sort it all out. I think there may still be some underlying reaction going on with me… possibly… I don’t know. I have to try lentils and broccoli again at some point – I was reacting to broccoli for sure, but I think I will test it maybe in the new year. I definitely have noticed a massive difference now I am being extremely diligent about my food.
DeleteFor some years I would eat and just really feel bad… but I didn’t realise it was food related because I thought it was just me feeling the usual exhaustion as one of the main times would be post-lunch (when people often report having a slump). I remember eating homemade coleslaw at a pub quite a number of times when I went out for work lunch with colleagues and going back to my desk and just wanting to die because I felt so awful and longing to lie on the ground… but I thought that was my M.E. because I was working at that time and had a lot of personal issues going on that were very stressful.
Eventually I identifed onion after I had my last meal to willingly contain raw onion and reacted in a quite dramatic way (see below). At that point I didn’t identify a strong reaction to garlic so I would have it sometimes in sauces and so on. Also my reaction in the early stages was severe to the raw form of onion/spring onion/chives etc, but I was not as cautious about the cooked form. I didn’t use it in cooking, but I also wasn’t checking every label of things like stock and so on. It was not until recently that I realised that every time I ate my main meals, I was feeling really unwell after and it was affecting my whole day in quite an extreme way. Then when I started to think about it, I realised I never felt ill in ‘that way’ after breakfast and breakfast never contains garlic or onion. Also, and this was a useful test, I felt much better when I ate NOTHING, than if I ate. I felt so much better that for a while I couldn’t bear to ingest anything and I started to find ‘safe’ foods that didn’t make me feel ill and kept eating those. One shouldn’t feel like that really… another lady I know who has a range of severe chronic health problems has the same response (better when not eating a thing) and she has MCAD since childhood. She actually is unable to eat anything and lives on a liquid medical food. She also has reactions to medicines and a whole host of other stuff.
DeleteI then started to look at everything I was eating and realised that I was getting minute amounts of garlic, and sometimes onion, in sauces and stocks and other things like pizza sauce and batters/rubs/seasonings. I had been looking out for chunks of onion or obvious onion in dishes and especially the raw or barely cooked versions of it (salad.stir fries etc) and avoiding that…. what I didn’t realise was I was constantly causing a low level allergic reaction.
My reaction to the allium is my eyelids swel and I feel like I am being poisoned. It literally feels as if I have swallowed some substance that is a poison and my body is shutting down. It’s so marked that if I eat something that does not obviously have allium in it, we can all tell that it has as I either go incredibly drowsy to the point where it looks like I am losing consciousness or else I pass out (this happens more with the raw version or trace of raw onion juice on say lettuce leaves in a restaurant). It’s really scary. At the same time I can feel my heart working really hard (I already struggle with tachycardia, but it also seems to beat really hard like a booming beat). I have read on an MCAD/Mastocytosis forum that some people suffering from that issue have the same response to triggering foods. I found that really interesting as it is hard to come by information relating to this sort of reaction, except I did find a tiny group of people on the Internet who also react to onion like that. Anyway, it made me wonder about a mast cell activation component to my disease process, especially when coupled with me having like over 70% of the symptoms listed on the Canadian Mastocytosis site. I do feel that since developing the AI thyroid disease this allergic response seems to have just gotten worse so that I am now super sensitive, whereas it started out far milder (e.g. I could get away with a little garlic in something). It’s almost as if my body thinks the alliums are a foreign invader or something so perhaps this is related to the AI issue rather than Mast Cell.
DeleteWith the gluten it is different, I think it promotes an inflamatory reaction. I suffer suspected endometriosis that affects my bladder, bowel and my uterus. With the gluten free diet I am not experiencing the severe pains in the uterus, but am still struggling with the bladder (really badly) and my bowel to some extent. As an aside, I noticed my brainfog is greatly improved with it – not all the cognitive issues, but the muzzy feeling I constantly had. Then when I had some gluten by mistake in some gravy when I ate out a while ago, I got a bad response… I was really ill the next day with a migraine, nausea, diarrhea, fever/sweating etc. So now I am really wondering what’s up with that! I am being ultra careful with gluten now and have done more research so I can hopefully avoid getting glutened again.
Hope this helps!
RE: income... I don't know!! I really wonder too. To be honest, I go on the M.E. forums like Phoenix Rising and some others I can't remember the name of and I see SO many people on there - adults - and I wonder... how are they living? On what? How do they survive? Not just the financial aspect, which puzzles me, but also the practical aspect... if alone, how do they manage to live. I can manage for a short time by myself, but by the time my parents return I am always worse and in a state as a result of doing things I don't normally do. It really saddens me to hear you are having to eat up your retirement savings. Do you think you would qualify for disability in the US? Here, it's nigh on impossible... and if I did get it, I wouldn't be able to do anything of my own like a little business... which if I can do it, I would rather do. So I am trying that first and will go from there. It's probably one of my biggest fears and worries.
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