Anxiety returns

I haven't written much about anxiety here on my blog. Thankfully these days it isn't a huge problem, well that was until last week.

My bodies favourite party trick is to pass out, mostly when there is something slightly squiffy going on with my stomach. It happened enough to get noticed when I was a kid and in very particular episodes since I've been an adult.

A few years ago I was quite unwell but had to walk my daughter to the end of the road to hand her over to someone else to take her to school. I made it almost all the way home before collapsing on the pavement. That episode sparked a year of pretty intense anxiety relating to leaving the house on my own.

Well, I've been feeling squiffy for a couple of weeks, nothing major, just stomach pain, nausea, and quite frankly I'm getting bored of it now. I roped in others to help with the school run when I actually felt like passing out was a possibility, but last Friday I felt alright, nauseous and in pain, but alright. That was until I really wasn't alright. I found myself laying on the floor at the school gate watching the other parents filter past me (I may have made that sound a little more dramatic than it was). Luckily a group of my friends were there and promptly got me a lift home and collected the kids. Sorted.

Except now, I'm still not right, still nauseous, generally not 100% and really rather anxious about the school gate.

I am a compulsively early person which means I often spend great chunks of time waiting at the school gate. This week I have tried very very hard to leave later and be "on time" but still found myself early. This afternoon I arrived 4 mins before the gate opened and it took every trick I know not to have a full blown panic attack. Which is utterly ridiculous.

I've come home tired, fed up of feeling ill and quite stressed about how this anxiety is escalating.

Anyway, there isn't really a point to this except to let people know where I am at so they can distract me when I undoubtedly continue to arrive early.

ME Awareness Day 2018

Today is ME Awareness day as I'm sure you are well aware from all the posts I've been sharing.

I've been wondering all week what my blog today was going to be about. I had a couple of false starts and this morning decided that I didn't HAVE to write a blog just because it is awareness day. But then I was chatting to a friend and it suddenly became clear what I should write.

I've been reading over the last week a whole load of #millionsmissing posts, which is a marvelous campaign and I hope the various demonstrations around the world today have opened eyes. What I've learnt (though really knew anyway) from reading these posts is that I am lucky.

I am not bedbound, I am not housebound, tubefed, paralysed, unable to face light, sound, company.

The diagnosis of ME covers such a broad spectrum of symptoms it is crazy that they can band it all under the same name.

My specialist used to get me to rate my health in terms of % and it is something that has stuck in my mind and can be a useful tool to mark progress. As some of you will know I've not had the best 2018 health-wise so far suffering a pretty major set back at the start of the year. I'd say I am currently hovering around 55% but have been as low 25%. (I have now been staring at those numbers for 10 mins wondering if they are right, hmm)

I have only in the last month or so began to feel like I am participating in 2018 and not just watching it roll on by.

So yes, I am lucky.

But then on the flip side.

I took my girls this morning to a local Kwik cricket club. This was the first time they have shown any interest in the game and I was quite excited. Being there made me realise how much I miss playing the game and teaching others the skills. It also made me realise that I haven't even taught my kids how to throw and catch a tennis ball. But after standing in a field for an hour I was completely floored and fully reminded of why I can't do it.

There are when I think about it so many things that I miss doing.

But life evolves, you adapt to what you can do and try not to dwell on what you can't.

So yes, I am lucky.

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

New Year - New You?

Tis the season for re-evaluating life, figuring out what is important and if/how things need to change.

I have just had possibly the busiest December since I stopped working pantomimes. Looking back it is mostly a blur and I now feel worse than I have in months.

To the extent that during December many old symptoms returned like over sensitivities - on one particular day I actually wanted to pull my hair out, so I shaved it off instead. My sleep patterns have become disturbed again, with night sweats, many many dreams and early hours waking. Not to mention some brand new symptoms. So it is definitely time now to rest and try and find my way back to a better place.

It was my birthday yesterday. As a rule I like birthdays, but I don't like having a birthday on January 3rd. The lull after Christmas is never fun, everyone getting back to work, bad weather. So first change, perhaps from now on I should celebrate my birthday in July?

Second change. I enjoy crafting, but I don't enjoy selling. I didn't much enjoy the craft fairs I did in December. I found them stressful to prepare for and to participate in. So perhaps this year all art and craft should be souly for myself. Which leaves me with the slight conundrum of what to do with the stock that didn't sell - but I see many random acts of kindness, abandoning projects in their future, which makes me happy.

I plan to revisit art journalling and give bullet journalling a go.

This time last year I wrote a bucket list, over the course of the year I ticked off kayaking, Segway at Leeds castle and made a start on my epic kickscoot the coast. I think I need to update the list with new ideas but I would like to tick a few more items off the list this year, perhaps rock climbing and snow tubing?

I would also like to get further in my scoot. So far I have covered 111 miles and have got to Bexhill-On-Sea.  The rest of the journey is going to be far slower progress the further away I get but I am very much looking forward to the challenge.

I discovered geocaching last year. I knew about before, but had never given it a try. I am still very much a beginner, but it has taken us as a family to places we wouldn't otherwise have visited and given us more time together and outside having fun. So this year my aim is to do more of this. There is a very social local group so I hope to join them for some get togethers too.

Accountability

A wise lady keeps reminding me that I need to be accountable for my health. I need to put my aims out there, tell the world, let people know what I am trying to achieve and who knows maybe others can then help me, spur me on, encourage the changes I need to make?

My health has come along way in the last year but there is so much more I could be doing to help myself. My diet has gone miles down hill since new shops opened a very short scoot from my house. More and more often I'm "treating" myself, rewarding myself for the trip to the shops, or for a job well done, or just because it's Monday...

This needs to change.

I would also like to incorporate some gentle exercise into my routine, but this is far trickier than managing my diet. I have to factor in pacing and recovery time. I used to love exercise. I used to walk everywhere. I still miss playing cricket and badminton. But aside from the logistics of getting back into sports it is also unrealistic.

So, things I can do to help myself;

• Meal plan,
• Stop "treating" myself,
• Walk a little more of the school run,
• Take the basketball to the court once a week,
• Make daily stretches part of my routine.

Right, that's it, that is me being accountable, let's see if it works!

**Edit**

Having thought a bit more about this through the night I realise all of the above are targets for physical health, but mental health is just as important so perhaps I need to set targets there as well.

I have a very quiet life during the week usually, and I really do not crave a busy life, but a little more interaction with the outside world which doesn't happen via my phone screen would be nice. The highlight of my social week is the school run and some days that can come and go with barely a word spoken.

So perhaps I need to put myself out there. Not be scared of other people's busy lives. Ask the people I want to spend time with if they are free. Who knows I might be surprised?

This is probably the hardest target of all those set above.

All of this has come about from a bad week mentally and physically. Funny how bad times give you the encouragement for change.

This is me.

This is me, take me or leave me.

I am a shy person who occasionally does bold things like dye my hair blue, or shave it all off.

I took GCSE drama, performed in the school choir, and love to dance, yet one of the things I hate most is getting up in front of people and being noticed.

I also hate talking on the telephone and do avoid it as much as possible (apologies to those who do try to phone me).

I like wearing unshapely comfy clothes, which yes mostly come from the men's section in the clothes store, and yes tend to make me look boyish - especially with the shaved head. This does not mean I wish I were a boy, I just like to be comfy and I value that more than being accepted.

I do not wear makeup. Once upon a time I did try. I didn't like it. I think people are beautiful as they are and there is no need to paint on a face for the world to see. However I can appreciate why people like it, and that some use it to hide behind. I hide behind my sunglasses, I feel slightly uneasy on really dark days or rainy days when I can't wear them.

Vanity is a stress I do not need in my life. 

I'm beginning to learn that wherever I am (my home excluded) I always feel a little out of place, that is just me. 

As an adult I'm still not sure how to make friends. When the kids were younger I'd instigate play dates, but how does it work when they are at school? I chat to people online all the time, that is easy, but in real life? I struggle... I feel awkward and chat does not flow. I guess this will get easier with practice.

I like doing nice things for people. I like giving gifts when they are unexpected or needed rather than when it is appropriate to. I have just joined a Happy Mail group which I hope will open my eyes to new ways in which I can make people happy.

I feel like I am writing to justify myself, which isn't needed, but I'm writing it anyway.

Scared

Earlier today I wrote a post about having my hair cut off, which is all very well and good and some may find interesting, but it has totally masked how I am actually feeling about life at the moment.

Last week my youngest started school. The school run generally I struggle with and on my bad weeks I have been known to be a tearful wreck by Friday. Last week I was a tearful wreck by Wednesday... I put this down to the added anxiety, stress of my youngest starting school. Although I wasn't worried, I knew she was going to love it and be fine.

My lovely monsters shared their back to school cold with me so that hasn't helped this week, and actually I managed a little better, I wasn't a tearful wreck until Thursday! And I managed to get my paints out Wednesday - which is a mega bonus.

But Thursday, Friday and now today I have been completely and utterly drained. On returning from taking the kids to school I have sat down and pretty much not moved until it was time to pick them up again. 

This huge backwards leap in energy has me scared. Scared that I am not improving but in fact getting worse. This is of course unrealistic thinking. There are always set backs, especially when routine is changed, and I never remember how bad the bad days are after a spell of feeling a little better.

As I write this I'm getting a sense of de ja vu at having written something very similar before, which only emphasises the fact that you do almost immediately forget how bad it can get.

So please excuse my ramblings, I obviously needed to write this in order to help me remember that this is how it goes and it will get better again.

Holiday ramblings

The end of this week sees the beginning of the summer holidays for my children. This brings with it a range of emotions, pride, relief, sadness, frustration.

My eldest will be going up to year 2 and excitedly started her new class this morning.

My youngest will be starting year R in September. I am so proud of how she has come on in the last year. She has gone from a shy girl who would barely say 2 words to a confident, never stops talking whirl wind! She is going to love school.

But it also sees the end to me being a stay at home mum. I should be getting excited about looking for a job, going back to work. But I can't. I can't begin to describe the sadness and frustration at not being well enough to work.
A few people reading this will be thinking "oh I wish I didn't have to work", "you're so lucky being able to stay at home". But believe me when I say I am not. It is lonely being at home when everyone else is at work or school. It is frustrating not being able to bring any money into the family.
I should be looking on the bright side, think about all the extra rest time I will get that will aid my recovery, but it is hard always looking for the good points.

Holidays in themselves are hard. When the kids were little I would dread the summer holidays. 6 weeks without our usual routine of toddler groups. Now I find relief in them. Yes I will have 2 stir crazy children to entertain for 6 weeks, but I won't have to leave the house twice a day 5 days a week so I really can spend all my spoons on them!

I did recently have 2 and a half weeks of feeling great. We went on a family holiday and we walked, swam, scooted, disco'd and even climbed a light house! I managed to keep the momentum going for a while after we got back which was great, made me realize what life should be like. But then life happened, and I crashed. But I will get back there again.

I'm also struggling a bit with social media at the moment. I used to say that being a part of these sites meant I could live vicariously through my friends and family, but recently I've been finding it hard seeing people doing things that I wish I could be doing. So if I am a little quiet it is because I am avoiding my timeline. I am still looking at notifications though and posting the odd thing.
This is good really because I spend far too much time on the computer which is not good for my pacing and I will have far less time to look during the holidays.

I'm sure I will be back to my happy smiley self again soon. In the meantime bear with me.

Sorry for the ramblings, clearing my head.

'Just' M.E.

At some point in everyday I think this can't 'just' be M.E. 

It could be when I notice a new symptom, or an old one gets worse, or perhaps just during a low point in the day, but every day without fail this thought will cross my mind.

I don't know of it means I don't believe in M.E. and if I don't believe how could I possibly expect anyone else to, but M.E. is such an open ended diagnosis with so many different symptoms and possibilities. 

M.E. means something different to everyone who suffers from it, to everyone to cares for someone who suffers from it and to anyone else who just happens to hear the term.

I have had many people I've told say "oh yes that's what they used to call yuppie flu." Some sincerely because that's all they know about it, some jokingly obviously because that is how they think of it still.

I put some effort into raising awareness of M.E. I think it is important for everyone to have a vague idea of what it is, and if you know someone with it be able to look a little deeper into it. But the trouble is this illness effects so many people in so many different ways.

I will give an example of 2 people with the same broad diagnosis of M.E.

Person A: is completely bed bound, perhaps paralysed, cannot do anything for themselves, cannot even have bright light in the room.

Person B: works a fairly normal 40 hour week, but gets very tired and sore from this and perhaps then can't socialise and has to rest all weekend.

Both could have exactly the same diagnosis but lead very different lives, and there are an infinite number of variations between those two examples.

This illness needs research, research and more research. 

Everyday when I wonder is this 'just' M.E. it is scary. If I went running to the dr with every new scary symptom I would be labeled a hypochondriac but where do you draw that line? 

I wonder how many people with a diagnosis of M.E. stay clear of the doctors unless absolutely necessary only to find that actually there was something else and they should have gone in ages ago?

Sensitivities

Sensitivities are funny things, even funnier when you have M.E.

As far as I can remember nothing has ever really bothered me - oh apart from the smell of birds eye southern fried chicken when I was pregnant!

These days I suffer with a whole new world of sensitivities.
The common ones with M.E. are bright sunlight, loud noise, strong smells.

This means when it's bright out, or even when it's fairly dull sunglasses need to be worn. Not because our eyes will explode, or we will melt in the sun, but just because it's irritating, or painful to be out in the brightness without them.

Loud noise I can cope with if it is in my control, i.e. my music, tv, etc. I can even cope with my loud children a lot of the time. What I struggle with is other people's music, or a collection of noise. So my kids playing the demo on their keyboard while both running around the house screaming at full volume, with other music playing on other devices at the same time I find a bit too much. (As would most sane people!)

Smells don't bother me too much, except for that southern fried chicken, which either makes me hungry, or feel sick!

But I have a few more odd sensitivities...

I've always favoured baggy t-shirts and shorts over anything more lady like anyway, but these days wearing anything tailored, fitted, restricted in any way I find - now here I'm not sure which word describes it best so I shall use - irritating. If you pop by my house at any time of the day the chances are I will be wearing pj bottoms and a baggy tshirt. This is not because I am lazy and can't be bothered to dress properly, this is just what I am comfortable wearing. I do don jeans when I have to go out, I know society seems to have gotten quite lax on pjs being worn in public, but I am not there yet.

Jewellery is also an odd one for me. In my teens for years I wore a cotton friendship band, never took it off. Then one day after being struck down with M.E. I just had to get that band off, right then, it had to go.
In my adult life I always wore earrings, 2 sets in each ear, never took them out, until this relapse. All of a sudden one night I just had to take them out or I wouldn't be able to sleep. I haven't been able to put them back in since. I can wear the odd item for a short while, for an occasion, but I am always conscious of them being there, and very happy when I can take them off again.

The last one I can think of is my hair. I have short boyish hair. Never got on with it being long. I used to have it cut regularly every month when I was younger. At the time I had it spiky and if it wasn't cut that often it wouldn't style right. These days I try to have it cut every 6 weeks, but this is more relaxed through the winter as it doesn't bother me so much. But this time it has been about 14 weeks since having it cut and it is driving me mad. I don't care what it looks like (though i've been told it looks good), but it just irritates me. I don't know why, which is why I put it down to yet another sensitivity. If I could pull off short clippered hair then that is what I would do. But I know without trying that it would not suit me, though I often threaten it! - and yes I do hold onto that tiny bit of vanity, despite all other appearances.

I think all of these sensitivities vary depending on how bad my M.E. is at the time. My hair has been bugging me a lot lately, and I have been particularly unwell, which in turn is one of the reasons I haven't been able to have it cut.

Music, dancing and me

As a kid I remember always having music.

My dad played double bass in a jazz band, some of my earliest memories are of going to gigs.

As I grew up I was always 'borrowing' my mums and my sisters cassette tapes and learning the words or making up a dance to go with them. I particularly remember borrowing a Roget Miller cassette from my mum. Then later Levellers and Carter USM from my sister.

I remember in primary school putting a band together with a friend of mine - though mostly we made up dances to songs on Now 23!

Going up through secondary school I enjoyed singing in the choir, I tried a few different instruments, had singing lessons. I enjoyed socialising with the alternative crowd, rock & metal night clubs, moshing - about the closest thing to dancing I did in my teens!

Every new album I got I would sit down and listen to over and over again trying to learn all the words. It still amazes me if I listen to an album from that time how well all the words have stuck.

I was always big on the words. Tried writing poems in my teens, very angsty, unrequited love type things, I still have them in a box somewhere.

I never got into mainstream nightclubbing, went a couple of times, but really wasn't my thing,

I spent a bit of time in my late teens working with a friend of mine on the door at the 100 club in London for the Sunday night swing cats club. I loved the music, the atmosphere and was amazed by the dancing! I always hoped that one day I would be able to go back there and dance like that. I still have two much loved CDs from that time, Ben Waters, Shakin' in the makin', which I still dance around the kitchen to regularly, and The Fat Cats, Keeping up with the Dow Joneses, which I must dig out and play again!

I was about 19 when I went to my first Ceroc (modern jive) night, and was amazed to find how easy it was! I loved it, quickly went from going one night a week to going as often as I could, sometimes 3 or 4 nights. I was hooked. I danced and I danced until I met my husband, who didn't like the idea of dancing... I still went once every now and then, but never regularly.

I've been maybe 5 times in the last 5 years (since we had our first child), and now with this relapse dancing feels just out of my grasp. But then 6 months ago going into town to run errands was just out of my grasp, so I can do this!

It is such a wonderful feeling being on that dance floor, being led by someone else, not worrying or caring about what you look like or if you're doing it wrong, but just going with the flow.
Now I think about it I could say the same thing about moshing in my teens, it had nothing to do with what it looked like, but everything to do with how it made you feel.