Why should we ... ?

I used to wonder whether M.E. was a hint from mother nature that the human race is pushing itself too hard. If you think about it, it makes sense.We do not live the way we were designed to live.

Humans were not designed to eat the way we eat. Time and time again I hear of people with M.E. developing sensitivities to gluten, lactose, sugars, colourings, or any number of ingredients in our food. None of these are naturally part of our diet. If you look at what you eat you will find synthetics in nearly everything. I went through a phase a couple of years ago where by my body would only accept rice, meat, and vegetables. I know many people with M.E. resort to trying The Stone Age Diet. 

Looking at a stone age world, we would have woken with the sun and gone to sleep with the sun. We'd have had no reason to be awake through the night. We would have rested through the middle of the day when the sun was at it's pinnacle also. Of course, we are all very familiar with the fact that people with M.E. sleep a lot more than the average person. It is not natural for us to be awake "all the hours God sends". 

And yet we are expected to wake up when it is still dark, push ourselves all day, push ourselves all evening, sometimes even all night, and survive on minimal sleep. Meanwhile we fill our bodies with foods that we are not designed to eat, putting added stress on systems that are already overworked and over tired. How often do you see a colleague having another cup of coffee, or drinking one of those hyped up caffeine drinks, just so that they can push themselves to the next deadline? How often do YOU feel guilty that you're not meeting targets, even if they're targets in your own head rather than targets set by corporate bullies? Are we designed to meet targets? I don't think so. I think the only targets we're really designed to meet are those of filling our stomachs, with a possible side order of reproduction. Possibly some fighting off bears involved too.

My theory falls down when you consider the fact that most people with M.E. tend to be asleep all day, and awake all night. I let go of the theory when I started reading about the possible virus connections. I was reminded of it yesterday though when a friend of mine received a letter from Atos Healthcare. She has M.E.. She also has a number of phobias. She stated to them that she cannot use public transport, and cannot use the phone. They have assigned her a medical assessment in a borough that is not her nearest, given her an itinerary of public transport that includes buses, trains, and trams, and told her to phone them if she has a problem. It made me angry. If she fails to attend the assessment, she loses the very little money she lives on (she is claiming a lot less benefits than she could be), yet if she either attends or phones them to say she cannot attend it will be assumed that she has lied about something on her form ... and she will lose her benefit.

I do understand how society works. Some people don't work, so the rest of the people have to support them. The more people who don't work, the harder it is for those who support them to get by, as more and more of their income is going in support. There has to be balance. So, yes, I understand why the DWP and Atos Healthcare try to push us to work. But sometimes I just want to shout at them. What they are doing to us is not natural. It just bugs me so much that they work so hard to try and force everyone in to such an unnatural way of life. I'm ignoring the bullying tactics at the moment, their attempt at entrapment. I'm wishing that there were options in life for those who simply cannot live the way that society expects, to be accepted and willingly supported.

Confused

I am so confused. So, my duty today, is to share that confusion with you.

I'm just so sick and tired of being constantly ill. If it isn't one thing, it's another, and for the most part I can't even figure out which thing it is causing the symptoms, and therefore what to do about that which is going on with my body. 

What am I talking about? Well, this may not actually make sense, until you've read all of it ... possibly twice.

I have M.E., as we already know. I may have PMDD. I also may be gluten intolerance. (There are other things, but these are the ones confusing me presently).

If you're familiar with my blog, then you're already familiar with some of the ins and outs of M.E.. But what is PMDD? Pre-menstrual Dysphoric Disorder.

"The symptoms of PMDD are similar to those of PMS. However, they are generally more severe and debilitating and include at least one mood-related symptom"

This was first suggested to me as a problem early last year, by my counselor. I had come off anti depressants just before Christmas 2009. In the January I had what I can only refer to as a funny turn. It's very hard to describe, but I became extremely irrational, I lashed out at friends, and people I interacted with on a daily basis (ironically, not Ian). I thought I was losing the plot, but it went away after a few days. Then it happened a few weeks later. It was my counselor whom identified that it was happening prior to menstruation. It was extremely scary. I talked to one of the doctors at my surgery about it. The notion was dismissed. I had one more episode, and then it stopped happening. I haven't thought anything of it until the last few weeks.

A few months ago, during the extreme stress of the Atos medical assessment procedure, I completely lost awareness for about twenty minutes; when I regained awareness I found I'd been self harming, and apparently harming the carpet also. A few weeks ago I had another 'episode', and again, last week I turned on my friends. It's horrible. You don't know you're doing it; the feelings of irrationality and paranoia creep in so gradually, that it feels rational, it feels like what you're thinking is right. And then it suddenly stops, and your mind feels like it has been released from a clamp, and you feel so stupid, guilty, and sheepish.

For me, the day that those feelings stop, they are replaced by a rush of OCD. I need to clean, tidy, obsess over something. So of course, I completely exhaust myself, and crash. Then I have period pain to deal with. I'm at the introductory period pain at the moment, which I've now had for three days. I'm expecting the extreme agony to kick in some time today or tomorrow. I have my kick-ass anti-inflammatories by my side awaiting their destiny as saviour of the month.

I finished the three month gluten free trial ten days ago. I gradually started introducing gluten to my diet again. The idea was to see whether I noticed any difference to my health with no gluten in my diet. I had failed the blood test for Coeliac Disease. I had thought that there was no difference to my health. I have now changed my mind.

I gradually introduced gluten back into my diet. I had Chinese pancakes the first day. A slice of bread the next day. Nothing much seemed to happen. I don't remember what I ate on the third day, but I spent most of the day flaked out exhausted and asleep; I thought this was simply an M.E. reaction to some of the activity from the previous day. I kept falling asleep wherever I sat or lay down.

So, I've eaten gluten fairly normally for about a week now. I didn't really think much was happening. I've been exhausted all week, but I put it down to an M.E. crash and stress. It was only yesterday when G came over and watched me fade extremely fast after I ate stuffing with my lunch, that I realised that I am reacting to gluten.

I had decided to not go over to his place for the weekend. I was feeling grumpy and exhausted when I made this decision. So here's my confusion...

Why was I grumpy? Was it because I am pre-menstrual? Was it because I am reacting to gluten? (One of the symptoms of gluten intolerance is lowered mood following gluten consumption). Was it because I am exhausted by M.E.?

Why am I so exhausted? Is it because I've been pushing myself too hard with M.E.? Have I been pushing myself too hard? Is it because of the stress of everything going on around me? Is there so much going on anyway, or is that just PMDD making it feel that way? Am I exhausted because of hormones preparing my body for menstruation? Or is it because I am reacting badly to eating gluten again?

How is my doctor ever supposed to work out what is going on with me, if I can't figure anything out to give him a lead to start with? This is just ridiculous. I am struggling so hard to cope at the moment.

What the frick is wrong with me??? 27-07-11

I woke up this morning with chronic tummy pain. This did not overly surprise me since I'd had the same experience yesterday. On Sunday G and I went down the road for a carvery lunch. I had forgotten that stuffing contained gluten, and tucked in happily. The good thing is that I enjoyed every mouthful of my lunch. The bad thing ... if I'm gluten intolerant then I just undid all the healing that would have been happening over the last few weeks. *If*. I figure, anyone who hasn't eaten gluten for weeks would probably react the same way after eating it again. We'll see at the end of the trial period.

So, I woke up, went to the bathroom, and was then so completely exhausted that I went straight back to sleep again. I woke up again a few hours later, but still felt drained, so read for a bit. Slept for a bit. Read for a bit. Slept again. Finally at just gone 3pm I felt awake and actually lucid, so I got out of bed. There was a letter waiting for me at the doctors that I was supposed to collect on Friday, so I went and collected it. I posted the corset to Nomi while I was out too.

Yesterday, Gand I had been talking about Counting Crows. I mentioned a song that he'd never heard of before. I decided to take the single with me in the car and listen to it. While I was out I had the bright idea to take the CD up to G. I thought it'd be nice to spend the evening with him. I looked at the time and realised that I'd get there a bit early. He finishes work at 5:30; I'd get there about 5.

I drove up there. Reached his place at 4:50, so decided I'd take the extra time to see what was further up the road (it heads out of the village; a direction I'd not been yet). So I drove for half an hour til the road ran out. Turned around. Headed back. It was gone 5:30 now, but he wasn't home yet. So I parked the car and went for a walk in the fields opposite his house. He texted me at just gone 6pm. I figured this meant he was leaving work. I sat on the hill overlooking his house to see when he got home. But he didn't. At 6:50 I finally phoned and asked him why he wasn't at home. He'd gone to the pub after work. He said he'd be home in half an hour. Since he'd not picked up on the fact that I was at his house I kept shtum and decided to head home instead .. forgetting that I'd already put the CD through his door.

I got home before him. He didn't notice the CD when he got home. So when he phoned me I was kind of skirting around trying to work out whether he realised I'd been there or not. I basically had to direct him to the CD. He was extremely touched that I'd driven up there, and then scolded me for not telling him I was there when I'd spoken to him at the pub. I could have gone and surprised him at the pub .. had I know where the pub was .. but I'm not exactly sparkly Nim today, and wouldn't want to meet his boss when I'm in this state.

I am very confused as to quite what is going on with me at the moment. 

First of all when I was at G's ten days ago I had all the signs of being on my period, including the weird mucous stuff (sorry for TMI), but no actual period. Whilst driving to his place this afternoon I had period pain all the way there. But not on the way back, and not this evening. 

Secondly, this whole gluten thing is tiring me out. I'm confused. I was so sure. Every time I ate something with gluten in it I was crashing immediately afterwards. Then I took a week where I eliminated gluten from my diet; I immediately started to have an appetite, all the weird cravings went away, and I stopped crashing after I ate. But since I've been on the elimination trial for longer I've started to become fatigued after eating again. G read that this can be normal, but I'm still doubting myself. And then I ate gluten at the weekend, and have very obviously reacted. And whilst I can say that anyone would probably react to it, I have to also acknowledge that I've immediately started having weird cravings and lost my appetite again. It's so confusing.

And finally, when I was walking in the fields opposite G's I went through so many different emotions. I was feeling fine. I felt like I was not ill. I felt strong, as if I had energy, I felt vibrant. And then I started thinking about how much I actually want to be with G; how I want my life to begin now, as if I've been waiting forever to be with him, and I started crying. And then I started feeling sad again, as I had been yesterday; questioning why every time I try to do something nice for myself it always goes wrong. It was as if my brain had decided to go through a role-call of emotions to check that they were all there.

Friday 27th May 2011

Ok, it's Friday and I've not updated since Monday. I'm having problems. Not just with M.E., but with my computer too. I'll post about my computer separately though. My memory is just so soooo poor at the moment, that when it gets to the end of the day I honestly can't remember what has happened throughout the day. The intention of this blog was to give a blow by blow description of each day, for my reference, and for printing for the DWP in the future (for my appeal), but I really honestly can't think at the end of the day. 

I've actually had quite a busy week for me, which has left me drained and exhausted every single day. Don't ask me what I did Monday; it seems ages ago now. Tuesday though I had the blood test for gluten intolerance, followed by an appointment with Dr Clark. The blood test went ok. But then I had to wait 50 minutes to see the doctor (it was supposed to be straight after my blood test). With the music in the waiting room making me giddy, by the time I left the surgery I felt so ill that I came straight home; I had intended to go food shopping. Well, Doctor Clark has confirmed for me that I do not have any kind of lurgy in my groin, but may in fact be mosaic-ed (I thought only men could have mosaic-ism). She wrote my sick note for me too. It's the first time she's done it, so she was looking at the computer for reference. For some reason, last time I saw Doctor Niklaus he wrote on the screen that I'd be able to return to work soon. What the frell??? How? Holy clap. If only! I'd give anything to be able to work :(

Ummmm. Wednesday. What did I do Wednesday? Oh yes! Wednesday I had an appointment with Citizens Advice Bureau. I was hoping to seek their advice on finding a representative for my ESA appeal. I was told that they do not represent, and that M.E. is a non-existent illness anyway. So I came away exhausted, upset, frustrated, and went straight to bed. Wednesday evening I spent trying to update my step mothers art groups website.

Yesterday I did way more than I should have. I actually went into Lichfield. I've been struggling with my glasses. I bought two pairs last year, both from online vendors, but not the same one. On one of the the plastic nose piece thing came off months ago, so I've been wearing the other pair. This pair though has become so scratched that I constantly feel like I have something in my eye. So I decided to take the other pair to Specsavers yesterday to see if they could offer me any advice. Advice? No. Fix em? Yes! For free! Hoorah :) I also had four of my watches fixed at Timsons, and banked a cheque with HSBC. And then fell over in Gregs. Came home. Went back to bed.

I've been having severe problems sleeping recently. The pattern my body has been forcing me to live with was being awake til about 3am and then waking up at 11am (unless the cat woke me up earlier). I have tried everything I could to force myself to get to sleep earlier. I've gone to bed at 11:30pm and just laid there for hours. Goodness knows why. Last night I went to bed just after midnight, and I slept all the way through to 9am. Yay me!!!!

This morning I spent half an hour sorting out boxes in the garage. Someone from Freecycle was coming to pick up a load of stuff that neither Ian or I would have any use for. So, I sorted that and took a rest. After the lady came to pick it up I took our patio roses next door, so that Hazel can enjoy them for the summer :) The rest of today will be spent resting ... after another blog post anyway.