Food and M.E.

When I started this M.E.. relapse in February 2013 I was getting all sorts of symptoms I had never had before. Chronic heartburn, indigestion, and dizziness to name a few.

In June one of my friends suggested I try cutting out gluten. This was a challenge as bread and pasta have always been some of my favourite foods! But within a couple of weeks I was noticing some major changes. The chronic heartburn and indigestion had mostly gone, and after a couple of months the dizziness went away as well!

I was however still getting some stomach cramps and occasional heartburn. I went to the Drs and it was suggested I try going on the fodmap diet. This has hugely helped, but is very restrictive.

The more I have paid attention to how I feel verses what I eat the more I have had to cut out. Once a food has been removed from my diet it is very hard to reintroduce it. I think this is because I then expect to react to having eaten therefore I do react - I guess this is a negative placebo effect.

I saw a nutritionist a few months ago and underwent Vega testing - which I read up on after the testing and can see why medically it is seen as a joke. Even the lady testing me couldn't tell me how it worked. However there seems to have been a lot of truth in what this machine told me I should be avoiding. In fact I think there is only 1 food on the list which I have reintroduced with no ill effects. Though there are plenty I have problems with that weren't on the list!

Generally it seems with M.E. it is helpful to cut out caffeine, alcohol and sugar. Caffeine was easy to let go of (though I still have 1 real tea in the morning). 

Alcohol I still miss, but even half a glass of wine gives me a 2 day headache, so it's just not worth it.

Sugar on the other hand has been hard. I've tried baking with reduced amounts of sugar, different types of sugars and syrups, but the only thing which doesn't send me into a crash now is molasses syrup, specifically in flapjacks (which I now live on). Also fruit seems to be ok - of course excluding the high fodmap ones.

I do feel sad sometimes that I cannot eat the things I want to eat. Today I have a nasty cold and I would like nothing more than to have a nice bowl of soup out of a can with a stick of garlic bread, but there are so many things in that combination that I cannot have it is totally out of the question, the result would inevitably make me feel worse than I do already!

I hope one day that I will be able to eat at least some of these things again, but for now I am stuck in a land of plain meat, rice, and fruit and veg! 

So I can no longer have gluten, dairy, alcohol, caffeine, sugar or nuts - basically I'm no fun at a party, or I'm a very cheap date!

It's a small world

Having M.E is like living in a very small world.

Often with M.E. your whole world is your house. Anything outside it is scary and out of bounds. And even then a lot of things inside your house you cannot do. It is frustrating, you can see all of these things that you want to do, but know that you can't. 

It's hard looking at jobs knowing you could have achieved all of them in a day when you were well, but knowing it will take a month or longer to do the same jobs now.

If you are unlucky enough to have severe M.E then your whole world is very small, probably only as big as your room. 

At the moment my whole world is my house, and the school run. On a good day the beach might be a possibility and on a really good day, or knowing I need to but that there will be payback my local shops might get a visit. 

Even with my slightly expanded world I still find anything outside the house a little scary. 

I have had to find a way to look around the house and prioritise. There are always things that have to be done everyday, there are other jobs that can wait till tomorrow and there are hundreds more jobs waiting for some other time (or other person) to do them!

I am still getting better, but progress is slow. 1 step forwards 2 steps back is how it feels at the moment. But all I have to do is think back to a year ago to see that I AM getting better.

Me time

Today was my youngest daughters first day at preschool. It was the first time she has ever been without either me or her dad.
She was brave, took it in her stride and I am very proud of her.

So from now on I get 2 and a half days a week without either child. The first time for me I have had in 5 years!

It was very odd leaving her there today and walking around without her leading the way, I suppose I will get used to it, but it will take a while.

So, what am I going to do with this new found time?
Today was only 2 hours, and I didn't dare leave the grounds, so I sat in the children's centre making paracord keyrings & bracelets, and cutting out various bits and bobs the staff there sent my way (it was very busy in there today).
I picked up some forms while I was there with the idea of volunteering some Monday mornings, when I read the form it made me laugh. I need 2 references who are not friends or family... I haven't worked in 5 years. My last direct boss was my husband, though I may still be able to find someone at the company who would vouch for me. For my second reference I would have to go back 8 years. How on earth could any reference from either of these bosses be at all relevant to volunteering at a children's centre?
The staff at the centre have seen me pretty much every week for the last 5 years (with a little gap when we moved away), surely if they don't know me no one does?

So, tomorrow I have from 8.45am until 3.15pm with no children. It is going to be so strange.
I know I need to not do too much, but at the same time there is soooooo much that I could do! I have orders that need making, many projects that need starting. A house which needs organising, tidying, cleaning.

The thing I am most looking forward to doing is listening to some of my music, loud, and singing without being told to stop by one of the children, or dragged off to help with the toilet or to stop an argument.

I will try very hard not to do too much else. It will be so easy to overdo it and be useless for the rest of the week.

I AM getting better and this free time could give me just the rest I need to boost my recovery - well here's to hoping anyway!

Waiting for the crash

Crashes are strange things

Sometimes if I have a friend round for the afternoon I can feel myself getting more and more tired and by the time they go I can hardly move. I think of this as a mini crash as it doesn't seem to flow over into the following days (or not too badly anyway).

Other times I seem to be able to get away with doing much more but the crash is delayed. 

Take this week for example, I went on a mini holiday. 5 hours in the car there, 2 nights in a hotel, 7 hours in the car on the way home. That in itself is exhausting, but then add to that I was constantly surrounded by people, family, children, noise. During those 3 days we ventured to 2 parks, an animal petting farm, had a picnic, went to 2 cafes and went out for dinner. Also on the drive home we stopped at a shopping centre and got my 2 girls measured for new shoes.

I was very much expecting to wake Saturday morning and find myself in crash mode, but I didn't. All day I was waiting for it. I sorted all the holiday stuff and put it away, did the washing, still no crash... We went out to get the few bits of school uniform needed for next term, still nothing... I cooked a nice dinner, now quite tired but not what I would call crash.

So when will it come? 

I know it will come, but when? 

It's an odd sensation feeling well when you know you shouldn't. Kind of like living on borrowed time, or borrowed energy.

I know I need to take it easy for a few days now, because the energy I am feeling isn't real. If I keep going like I have been it will catch up with me and the crash will be far worse. But how do you stop yourself being busy when you do feel up to it? How do you do less than you feel capable of doing? 

These are questions I will never know the answer to, yet I will constantly ask.

Friendships

I have always been one of those people who gets on with everyone, who doesn't stand out from the crowd, doesn't voice opinions and spends a lot of time in my own company - with or without the ME.

Perhaps this is why when I was a teen I liked having my hair various shades of blue and purple. It made me stand out a bit and became something of a conversation starter.

I have always had trouble making friends. Perhaps I come across as odd, I don't know...

When in a group of people I tend to have trouble contributing to conversations, not because I don't have anything to say but because I can't find a way in. I usually try a couple of times and then give up and sit there smiling and nodding. Again this has always been the case with or without the ME.
The ME does make it harder as when I do talk I loose my train of thought easily, forget simple everyday words and muddle my words up, especially when I'm a bit tired.

I had some good friends when I was at school, but once I left at 16 I gradually lost touch with them. We are still in contact thanks to the joys of Facebook, but I wouldn't call them friends in the true sense. In that we don't talk regularly, we don't share our lives - more than just reading what the other is doing, and we can't depend on each other for support when needed.

I suppose though these days it isn't all that clear cut. I have good friends online who I can moan to if I'm a bit down or in need of support. I have friends locally who can help me out if I need something from the shops, or help with the kids.
What I miss is having a friend that comes round often for that cup of tea and a catch up.

Pacing

Pacing is the best thing you can do if you have M.E.

It means taking it easy, never doing more than you are capable of, in fact never doing as much as you are capable of.

My specialist (in my teens) said never do anything today that you wouldn't be able to do tomorrow. So if you're having a good day today and feel like doing a bit more than usual, don't!

He also recommended never doing anything for more than 15mins at a time. So you can watch your favourite TV show, but only for 15 minutes, then you have to go and do something else, something completely different like ironing (just an example never happens in this house!).

Pacing as a teenager was relatively easy as I had no commitments, no deadlines, no need to do anything. Having said that I was still pretty hopeless at it. If I was feeling up to it I would watch that whole film, read all of that book I was enjoying, generally not follow the rules.

Pacing with 2 small children underfoot is even harder.
The bare minimum; meals have to be chosen, shopped for (all be it online but with brain fog even this is tough), prepared, cooked. Clothes have to be washed, and the house kept in order. Children need to be delivered to and picked up from school not to mention entertained and refereed!

I am fairly stubborn and a parent, so often feel the bare minimum is not enough. Therefore when I am feeling good I forget all of the rules, we go to the beach, we go to the shops, or to the park, basically I go that extra mile, use up all of my energy to try and make my kids lives that little bit more fun.
This always backfires when I then crash which means even the bare minimum is too much...

Will I ever learn how important pacing is?

Every bug is scary

For most people catching a bug is inconvenient, and never very nice. 

For me catching a bug is one of the scariest things in the world.

To start with you don't know if its actually a bug or if it is a crash, a contamination of food, or just some lovely new symptoms to add to the list.

You try to carry on, plodding through the daily to do list until the bug takes hold and in my case this week leaves you passed out on the floor.

So then you take it easy and you hope it will pass quickly - just like any normal person would.

Now 4 days on I should be feeling better, but the overwhelming fatigue is still here. I cannot stand or do anything for very long, and I daren't even consider leaving the house under my own steam.

So then I start wondering is this just a bug or has it struck me back into relapse?

I feel today how I felt a year ago. 

I have worked so hard in the last year to get myself back to what almost resembles normality. To have all of that taken away by a small insignificant bug is just not fair.

I've written this to share my worries, now I shall go back to thinking positive. For one of the awful catch 22s of M.E is the more you worry and stress about it the longer the recovery will take.