An Update: Food Allergies & Intolerances, Mast Cell Issues and Earning Money With ME/CFS and Other Diseases

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.

Things Have Been Difficult - The Juggling Game

As I alluded to in my last post, things were beginning to become a little challenging. In typical me (or M.E.) fashion, I started to relapse or crash or whatever you want to call it...I managed about 2 weeks of doing my extra course that required A LOT more effort, travel, carrying things, walking... and then it started...

Photo Taken by Me 

It's so disappointing. No matter how long I have been ill, I have still not managed to shake the disappointment resulting from yet another of my attempts at doing something, and then suffering for it.

I staggered on, missing one class of my language class, then managing one, then missing one and now it's the half-term break from both courses and I am sighing a big sigh of relief and trying to rest and relax and not focus on studying for a little bit. The good news is that while I enjoy my original language class, I actually only have one left after half-term, and for that I am grateful because I definitely would not manage to keep this non-sick friendly pace up any longer than that.

As a result of this whole situation, I did have a moment of self-doubt when I wondered: is LDN even doing anything?

On reflection, I realised that it seems to be working in a way I had not anticipated. Rather than being a miracle cure, which for me it is clearly not (and I didn't expect it to be), it actually seems to be preventing me from having progessive disease symptoms. I hadn't really thought about that before I took it and I hadn't really realised that it had happened. I had assumed LDN would just make me feel a lot better - not cured, but massively improved. In some ways it has made me feel better, although if I am honest it has been less than I had hoped. The biggest thing is that, for a long time before LDN, I was getting progressively worse, which was scary and very unwanted. Now, I am still sick in a big way, but it's sort of stagnant and stable. That is to say, I seem to be hovering in a 'range' of illness, rather than getting better or worse. The relapse fits within this range. It essentially feels the same as how I felt when I started taking LDN and was really struggling to cope with my body's reaction to the drug, so while it is still frustrating and a wee bit scary, it's not worse than before. If I obey the body and actually rest and pull back on activity a lot, I start to feel a bit better again... probably quicker than I did before taking LDN. So maybe it is fair to say my 'bounce back' factor is increased/faster?

I think it is useful to analyse in this way because I am definitely not going to stay on LDN if it is not doing a thing for me. I also think it can be easy to get used to how things are and forget how they were. At the moment, I have decided to order another batch of LDN, to gradually increase from 3.5 to 4.5, and try that for a while before making a decision over whether to continue it long-term.

Anyway, this whole experience coincided with me making a decision about whether to go ahead with hairdressing training in September. I basically had to make a decision within the next couple of months over whether to apply, and I was finding that a really stressful situation to be in. I think my difficulty was a mixture of me knowing that it would be a useful qualification for me to add (especially from an earning perspective) to my education, combined with me knowing how unwell I am, and how difficult I find it to even manage doing a few hours a week of studying... let alone a couple of days of physical activity, plus studying. I actually felt quite scared of the commitment and of signing up for something that I couldn't cope with, but felt compelled to stay on at because I am not a quitter and the financial commitment to such a course is massive and non-refundable. So rather than put myself through this, I have decied to postpone any attempts at achieving this goal, and to concentrate on my business and getting my health better.