Flare

I appear to be having what I am going to call an ME flare. Which I would say is worse than a crash but not as bad as a relapse.

I did far too much through December. I ignored the odd symptom that reared it's head and I pushed through. I did this because I was having a glimpse of a "normal" life and I wanted it to be mine. And now I really wish I hadn't!

I started feeling the onset of this "flare" before Christmas but I continued to push on. It wasn't until the kids went back to school that it has really begun to take hold. Three weeks on and I still feel like I am getting worse not better, I am getting different symptoms coming back everyday.

I have had enough of feeling sorry for myself. I have been utterly miserable the last few weeks. Feeling this illness grab a hold of me again, I can't even begin to describe how that feels, having been doing so well.

I have been beating myself up about it over and over again (which of course only makes it worse). One of the ways in which I've been beating myself up has been pushing my friends and any help offered away. I've been deliberately not engaging in conversation, avoiding eye contact. Partly because any sympathy offered is likely to make me cry and I don't have the energy for that!

But as I said I have had enough of feeling sorry for myself! I need to regain my positivity. Remember how to pace from square one again, how to look after myself. And most of all how to BEAT THIS!

I CAN DO THIS!

Send me strength and spoons x

Health anxiety = Hypochondriac?

I've been wanting to go and see my doctor for a while. I've been putting it off a bit as I have been feeling so unwell and when I have felt up to it she hasn't been available.
Eventually made an appointment with a two week wait. Great, lots of time to prepare. So I make a list of all the symptoms that have been worrying me. Add to the list various supplement trials others I know of with m.e. are on and I'm all set to have my mind set at ease and possibly further investigations done.

Downside of having so much time to plan is the anxiety build up in anticipation of going at all. I don't go out much, and knowing I have to be in a set place at a set time and with it enough to achieve what I set out to achieve is rather daunting.

I've been feeling quite scared lately, scared that perhaps this time I won't get better and that I might get worse.

First thing she does is laugh at my long list and tell me that I should only ever make an appointment to discuss 1 or 2 symptoms.

After looking through my list she says she thinks I've developed "health anxiety", I think this is another way of calling me a hypochondriac. I thought I was being well prepared and informed, apparently not.

She then goes on to say that if anyone (without m.e. diagnosis) came in with my symptoms and they had 2 young children at home, she would say the symptoms were down to life with young children. But I don't see any other mums out there who don't leave the house except to deliver the kids to and from school and even sometimes struggle with that.
I don't see other mums who have to spend all weekend resting instead of enjoying their family and going on outings because otherwise they wouldn't be able to function for the following week.

She did say she wasn't dismissing my symptoms, though at the same time it sounded like that is exactly what she was doing.
She has agreed to send me for blood tests, but said she really didn't expect them to show anything.

I know I have a diagnosis of M.E. given to me 13 years ago, but I have spent 8 of those subsequent years in good health. When both my kids were small I was in good health, still very active, able to work and enjoy my kids.
I don't understand how they can be so relaxed about my symptoms now due to a diagnosis made so many years ago!

Sorry for the rant everyone, but I am feeling so frustrated and let down by the system today.

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.

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.

M.E. the relapse

In the early months of 2013 I was very stressed, I suffered a chest infection followed by an ear infection and just didn't pick up. 

My gp said that it was post viral fatigue and I would improve after a few weeks. My mum said it could be my m.e. coming back and I should start following the rules again. I should have listened to my mum!

It took me the best part of 6 months to come to terms with the idea that it was the m.e. back. I had to stop driving due to the dizziness and fatigue that had taken over my life.

We moved back to Whitstable in the October of 2013, which very much helped with the reduction of stress!

When we moved back the idea of having to get my eldest to and from school was scary. I knew I needed to take my youngest to toddler groups and that was daunting, and going into town to run errands was out of the question.

Now 7 months on I can manage the school run with out becoming a tearful wreck by Friday. I can go to the odd toddler group, although I do struggle with these due to the over stimulation, noise, people, heat. And amazingly I can even get into town using my electric tricycle and run errands! 

I am amazed with how far I have come, and I hope I will continue to improve and perhaps next time notice the warning signs.