Monday, 12 May 2014

M.E. Awareness Day & Week

Today is M.E. Awareness Day and this week is also M.E. Awareness Week, so I thought I'd come and write something here.

I've lived with M.E. for 23 years now and it just doesn't seem to get any better. I think it's partly the disease process and partly the lack of coordinated care/treatment plan by any medical professional. Instead of viewing me as a whole, issues are dealt with as they arise - allowing them to arise when perhaps some of them didn't need to. For the most part I've been left to cope and worsen by myself - with absolutely no medical help. Instead of the life I dreamt of: a husband, children, home, car (and ability to drive), a job and money, I've got a dog and 6 lovebirds, and I live with my parents. At age 33, I have no independence; I am totally reliant on others to facilitate anything I do: from the food I eat, to the places I go. In short, it's not a life, it's an existence.

Since I last wrote, things have been very difficult for me healthwise.

Towards the end of 2013, problems that had been developing for years started to come to a head. They weren't M.E. problems specifically, but having M.E. and autoimmune thyroid disease increases the chance of me having these issues (and vice versa). The upshot of this is that I have been busy visiting doctors, hospitals, and pharmacies since December last year.

The end result is that I am now on the waiting list for a laparoscopy. In the meantime, before I can have the surgery, I have to have an MRI of my pelvis, and specifically my bowel. At the moment I have a provisional diagnosis of endometriosis. When you combine the M.E., thyroid issues and endometriosis, you get a big ball of ****. Until 2 weeks ago, I was unable to sleep as I couldn't get the pain under control and had run out of  sleeping positions to try. After a change of meds, I am now able to get sleep, but I hate taking all these medications. It's a constant battle to be comfortable/not in excrutiating pain, and my ability to stand is even more impacted so I pretty much can't stand for more than a minute without suffering badly for it.

It seems as if I reached a point a year or two ago after which the endometriosis symptoms started to really 'run with momentum', like a snow ball rolling down a mountain gathering more snow and speed. I ignored it for a wee while as I just had no confidence in doctors. It had to get to crisis point before I was basically forced to go to the doctors by my family.

I'm also dealing with heart issues again. I have to see the doctor to discuss it. I'm dreading that. I find it difficult to advocate for myself - it's so draining. I just don't have faith in any of the doctors I see, so now I only seek help when I literally have no other option.

One of the things I feel M.E. has caused me is a progressive bodily breakdown. I have just added more and more things that are wrong with me to the mix. Every time I try to move forward with other areas of my life, something else goes wrong with my body. I feel as if I cannot catch a break. I might be good at planning ahead and pacing and knowing my limits, but I can't plan for these extra things.

I'm still taking the LDN - I cut the dose back to 3 mg as I was concerned about becoming used to 4.5 mg.

Anyway, I guess that's my awareness post - a fairly personal one.

Wednesday, 18 December 2013

An Update: Crafting and a Visit to the Doctor

Things have been up and down since I last wrote on here. I have been battling a fluey cold for a while; it really does not want to go away! It has been a bit disappointing as I really wanted to get things done for the holidays. That being said, just before I totally collapsed with this 'thing', I did manage to finish making 2 presents and get 6 handmade Christmas cards done.

Hand Made Christmas Cards
I am really proud of my creations.

The upside of doing this craft work, is that it has reignited my passion for crafting. It's been buried for a long while. I have dibbled and dabled at a little knitting, some drawing and so on, but I've just been so busy trying to figure out how to help myself medically, that it's taken precedence along with my business plans. Now, I am desperately striving for a better balance so that I can manage to do the crafting alongside the other things. One reason I really want to manage to continue doing it is because whilst it is exhausting, it is also really relaxing and therapeutic. That probably sounds a bit weird, but I just go into the 'zone' and get my mind focused on this one thing... and I am pulling ideas out of my brain... which means I can't think of anything else. I like that!

Personalised Hand Made Applique Dog Cushion
Anyway, the bad news is that I have finally had to face a fact. Something else is going on in my body... again. It's been developing for some years, but... I have not been able to get a doctor to take me seriously about it. So a few years ago, I just gave up. I thought: 'Well, if they won't help me or listen to me, or take me seriously, then I might as well just stop trying to get them to and just live with it (manage it as best I can).' This kinda worked in the sense that I was somewhat managing it and gritting my teeth and grinnning and bearing it, but then it was getting worse and worse each month, and the past few months (especially the last two) it got so bad that I can no longer cope anymore. The thing which finally made me give up and go to see the doctor is that I was in so much pain that if it got one bit worse I was going to have to go to the ER, and basically for me to go there means I am at an 11 on the 1-10 pain scale.

It's quite bizarre... I rang up the GP's surgery to be told there were no appointments this side of Christmas (this was last week). I explained the problem. The lady told me to call back two days later at 8 a.m. and they would book me a call from the doctor. So I did that and the doctor called me back and booked me an appointment to see her that morning. What a convoluted system!

I will explain more of what is actually wrong, when I find out. Suffice to say, it's now bad enough that I am being taken seriously. At the moment I am waiting for a scan appointment at the local hospital and pending the outcome of that, I will then know if I need to be referred to a consultant.

Monday, 25 November 2013

Seizures in Sleep?

For the last 4 years I have not slept next to somebody. What one doesn't realise is that not sleeping next to another person means you have pretty much no idea what you do while you sleep. Recently I was dragged away to visit my sister as my mum wanted the company. There was only a double room, so we ended up sharing a bed together. Oh my...

... apparently something very odd occurs during my sleep... I seem to have some kind of seizure. It happened two nights while I was asleep. I am completely unaware of the whole thing. I don't snore (which I knew as I have been recording myself during my sleep using a sleep app). Th funny thing is, the sleep app was recording me in the night for apparent snoring, but whenever I listened to the sound recordings, all I could hear was masses of rustling noises as if someone was moving around loads, which I never really could make sense of. Now I am thinking - is that me jerking around during these episodes I seem to be having? It would make sense of the sound recordings if it were. It would also make sense if I am doing this because I have been really struggling morning-wise for some years and the doctors agreed it's not normal; however, they never followed through on the sleep study which one doctor advised another doctor I should have. They thought I might have sleep apnea or something of that nature. I wake up feeling appalling - as if I have gone 10 rounds in the boxing ring, with migraines/headaches, lightheadedness and nausea etc. Now I am wondering, if I can tackle this issue, maybe I would feel a bit better during the day and also be able to function more normally in the morning (i.e. get up without this mammoth struggle and actually be present in the moment rather than off on another planet in a distant galaxy far over there - which is where my morning brain likes to reside).

Took this picture while away of: the beautiful Hampshire Downs
I started doing some research (as usual) and it seems that nocturnal seizures are known to occur in some people with M.E. Hmmm... who knew? Anyway, aside from taking a pharmaceutical (which I would have to find a doctor willing to prescribe), I can try taking L-Theanine. I was taking it before for a while, but when it ran out, I never bought any more. It's meant to be effective in helping prevent these seizure issues, so I shall have to try it again and see how I feel in the daytime.

Poor Millie (my dog)... I think I have probably been driving her insane at night with all this movement (she sleeps in really late these days and also seems tired all day). The irony being that my dog has epilepsy and has woken me in the night to have a seizure... so we're somewhat even.

Monday, 18 November 2013

Argh! Good and Bad

Things continue to be quite difficult. I seem to be going through some kind of personal hell, but there is light at the end of the tunnel...

To cut a long story short, I was suffering that much that I thought I would finally just up the LDN to the 4.5mg. The rationale being: seeing as I already felt so awful, the side effects of my dose increase would be lost in the general awfulness (no time like the present eh?). So I did it. I took about a week to get over the LDN herx (which I am surprised I still got this far along the dose increase), and I am now feeling the better effects of it.

The better effects are:

I managed to do a little sewing yesterday and this morning (on the sewing machine - pictured below). I managed to play Words with Friends (I gave up last week and resigned or whatever it is you do... as my brain was just stuck) and win (by a few points). My sleep has improved massively... in fact this is the biggest difference!!! It's exciting. The time I am getting to sleep has been swinging round quite dramatically (as in quickly) from 2-3 a.m. to 1 a.m.-ish. When I get to sleep, I am dreaming! Dreaming big dreams... that I remember some of the next morning. I also feel as if I am sleeping rather than being in this weird state of semi-consciousness that I call sleep and others would call dozing.

The not so good (room for improvement):

I have been spending every day in bed whereas normally I try to be downstairs for a big chunk and go back to bed around 5-ish. This started before LDN and I am hoping it might go away. Recently on the good days I have manged 1 to 2 hours spread out over the day downstairs eating my meals and doing a wee bit of something (can't even think/remember what), and on the bad days I haven't managed that and actually gave in (probably shouldn't put it that way) and just lay there. I think it's hard not to start to feel down and panicky when this happens. Part of my panick and depressive feelings have been hormonal and part have been just pure fed-up-ness. I sat in bed crying - something I never do - because I am so fed up with dealing with my body and the horrid pain and nausea. I have been really nauseous... and just when I think it's gone, it comes back. I have been through periods of chronic nausea before, so it's not a new thing... just it seems to come in episodes of weeks or months and then disappear for a long time. I don't really know what that is. It seems to happen when I feel worse and have a decreased ability level. Not that my body loses any weight... but that's a whole other issue.

Anyway, I have decided, seeing as this is how my body wants to be right now, I am not going to push it. I am reining back in and giving myself this extra bed time and not making any social commitments even though I promised quite a few people I would see them in November. Oops. I feel A LOT better horizontalish (legs up) than I do standing up or sitting up. It's almost like going back to Pacing 101. I do think this also probably has to do with the autonomic issues as my body's urge to faint/blackout seems to be on a high at the moment and of course when I am more horizontal it's not causing me that issue, which feels a relief.

Friday, 8 November 2013

I'm not going to lie, I've been quite ill...

I am loathe to write this, but at the same time, I feel I should.

While I have made progress in certain areas of my ill health, I am not going to lie... I am still not doing well overall... I am grateful for any gains and small mercies, but if I am honest, over the past few months I have been on-and-off quite unwell. I am not bedbound all the time, but I am having long periods of being bound to my bed and just getting up to go to the loo. Even after all these years I find it hard to always know why... sometimes it's obvious: I did this activity/thing, and the PEM is what occurs later... but sometimes it seems as if I am doing all the right things.pacing well and still suffering. It's hard to know what to do then... because you don't know why, so you can't formulate a plan of attack. I know it's bad when I start fantasising about mobility scooters and those wheely things that have a seat on them that mainly elderly people use.

I see now it's called a: Rollator. This image comes from:
Being excited by those things also depresses me as it's further away from my goals in life and I feel as if having to rely on them is going backwards towards the wheelchair. I want to be going forwards towards fitness!! I am also scared about deconditioning.

I know for a fact that winter does not suit me - lower light levels (and lower Vitamin D), the cold and damp, all have an impact. I try to remember to use the SAD light when I can tolerate it and I am taking high dose Vitamin D daily.  I have also added in a sublingual Vitamin B complex. The cold and damp I cannot really change except to try and keep warm and to wear my gloves when going into cold situations to stop my hands flaring up.

I also think I have been under quite a lot of stress and pressure over the past few months - for various reasons. Certainly setting up business #1, which as I mentioned before is taking ages, has been taking up energy and I think that I am not pacing myself well enough there. I am either doing it or doing nothing at all... at the moment I am in limbo because I need to get a workstation and the one I wanted suddenly went up in price by about £80! I feel guilty when I don't do work at my business as I need to develop my own income stream and become more independent. I also feel frustrated because I actually want to do it and get it going... I know I can be useful and good at something, but I am always fighting these limitations and sometimes on top I end up fighting viral/bacterial infections or the allergies... and that just makes everything 10 times harder/worse.

Overall, if I am honest with myself, I have been doing more this year and not really realising or properly allowing for it, so then I pay for it by being 'unable' or going backwards or progessively getting sicker. I think what frustrates me the most is that on the LDN, I have had some periods where I felt different - in a way that I haven't felt before... since being sick - and because of that, I took it as a sign I could do all these things... and overall that feeling has now gone. Being a glass half full person, I do acknowledge that at least the fact I could feel like that is a sign of hope... that my body could one day be somewhat better or even have some kind of miraculous 90% cure or 100% cure (I did read about this happening to someone who had been sick with M.E. for 19 years).

I have one more increase of LDN to do, so I am now thinking that I probably should do that, as if it does make me feel awful, then at least it goes along with my current awfulness and I probably won't notice it as much as I would if I were in a good patch. I am hoping this increase might kick start my system again. My concern being that if it does, if I am at the maximum what happens if this situation occurs again (which I suspect it might). I did read of a lady with M.E. who split her dose of LDN when this happened and it worked. So I am going to look into that more and see if that might be an option for me.

The gluten free diet is also having a major impact - now if I eat gluten, I am getting a clear (and nasty) reaction, which in one way is scary and unpleasant, but in another way makes me feel that at least sticking to this might bring about some gut healing and help me overall. It is quite hard to be GF when I do get to go out - and I was unwittingly glutened which made me really ill... so now I am figuring out how to be even more careful. It's far easier to cope with the food element at home (so there is some benefit to being stuck at home most of the time).

Tuesday, 29 October 2013

Canary in a Coal Mine, Jennifer Brea & a Great M.E. Article.

The other day a lady I met online, who also has chronic illnesses, alerted me to this:

So far, so good - they are raising money and I hope this film raises a lot of awareness and maybe actually instigates some change.

A view from when we took the boat out - it was the last really nice warm day of this year

Anyway, Jennifer Brea, who had the idea to create this film, was interviewed and helped to create the best article I have ever read on M.E.:

This is really a good article to read if you have M.E., and to get your nearest and dearest to read if they don't understand. Reading it made me feel release; sometimes being able to read someone else putting into words what you feel or think is so cathartic. I am finding it hard to write these days... which is ironic for someone who used to be a freelance writer! I just can't seem to get the thoughts out properly, so I shall sign off for now.

Before I go - we had a storm on Sunday/Monday and had no power for a long time... from early Monday morning through into Tuesday morning... so I am behind on work, but the good news is, I slept a lot and caught up on sleep where I'd been having insomnia. Yay!

Monday, 21 October 2013

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 - - 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)

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.