Anxiety

Anxiety.

A year ago I didn't really know what anxiety was. Now I am all too aware.

It is getting worse and I don't know how to stop it.

I feel I am turning into a hermit.

It is not there all the time, but I feel it every time I have to leave the house under my own steam, or do something out of the ordinary.

Today I had to go into town. I had a cheque to bank and annoyingly my bank is not open on the weekends. Just thinking about this addition to my day was making me anxious. It took a great deal to pack my bag ready to leave the house and half way there I had an overwhelming urge to turn around and go home. But I kept telling myself "don't be stupid" "you can do this" "it is only a trip to the shops".

I made it into town 40mins before the bank opened. The coffee shop was open so I bought a mocha and a packet of pecan pies which I took to the beach. As a rule i don't have caffeine and highly restrict sugar, but felt I needed some courage. Of course the actual effect was a shaky high which probably didn't help.

I ran my errands came home and collapsed on the sofa where I don't want to move from any time soon. I watched what I thought was a kids film and cried.

I am pale as a sheet, dizzy and very glad I don't have to go out again today.

How do I make this anxiety go away? This is not me.

I used to love going out. I used to walk and walk and walk, always, I loved it. If I walk more than half a mile now the pain and fatigue are all encompassing.

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.

Confessions of a hairless ME

Well it has been one week since I took the plunge and shaved all my hair off!

In the week leading up to the event people kept stopping me and asking if I was nervous - I was not. Then people seemed keen to come and watch, so I opened it up to have people around to watch.

On the morning of the event I was exhausted and more nervous about having an audience then I was having my hair shaved off!

Half way through the cutting my eldest daughter (6) disappeared upstairs, when it was finished and I went to find her she was in her bed crying and she wouldn't look at me. She said she didn't like my new hair. I told her to remember that I was still me and what I look like makes no difference to who I am. She did eventually appear back downstairs (with a little hot chocolate bribery), and after not very long was wanting to take me out and show me off to everyone!

My husband who is hairless had warned me that it would be cold, but I wasn't quite prepared for the sensation of having no hair!

It has been a cold rainy week here, so mostly when leaving the house I have been in a hat. Not because I don't want to show off my new hair, but because I'm not quite ready to get a cold wet head!

I have managed 1 or 2 school runs without the hat which have only met with positive comments.

But here are my 'confessions'.

I couldn't look in a mirror until Wednesday without thinking "wow that's strange, what did I do!"

I can't stop running my hands threw it - it is a lovely feeling.

It is surprisingly cold and I have spent much time in the house wearing a hat!

I am amazed at how quickly it grows!

It does look better than I had feared it might, though I don't love it as much as I had hoped!

It has taken away the irritation that I often feel with my hair, but has left me with a new irritation, but I am hoping that will pass as it grows a little.

All in all I am thrilled with how much money I have made for the ME Association, very pleased I have finally gone through with it, and haven't experienced any negativity only a couple of odd looks and double takes.

Sponsored Head shave

I was first diagnosed with ME when I was 16. I was lucky enough to spend most of my 20s in good health, but unfortunately nearly 3 years ago this awful illness struck me down again.

Very little was known about ME when I was 16, and not much more is known about it now. Despite being a chronic, uncurable, debilitating illness which effects thousands of people around the world there is very little research done.

When I was 16 ME was just coming out of its darkest days of being known as yuppie flu and being laughed off and was just beginning to be treated like the serious illness that it is. 14 years later and it still feels like it is just emerging. There are many people like me who are battling to raise awareness amongst everyday folk. Social media has made it much easier to inform the masses and get the word out. But a lot of GPs are still stuck in those dark ages, wanting to laugh it off and not treat it seriously. This is why so much more research is needed, to give the GPs something solid to hold onto.

Many sufferers experience sensory overload, we become hugely sensitive to light, sound, smell, touch. You will very rarely see me outside the house without my sun glasses, even on a dull day. Others have to wear ear defenders, steer clear of strong smells, busy places.

One of my sensitivities is touch. I can no longer stand to wear jewellery, i often need to wear big baggy clothes which don't restrict me at all, and my hair really irritates me. This is one of the reasons this seemed the perfect fundraising for me, shaving my hair off is something I threaten on most bad days and now I will be able to see what it would really be like and at the same time raise some much needed money and awareness for the ME Association.

I asked my 6 year old daughter how she felt about me shaving my hair off and her first response was "nervous", so I asked her why nervous, she said "nervous of what other people will think".

I was shocked that my 6 year old already has preconceptions of conforming and worrying what other people think, this gave me all the more drive to go ahead and show her that it really doesn't matter what you look like, or what other people think, you are you and that's all that matters.

So on September 12th my husband will be shaving my head for me - and I can't wait!

To sponsor me visit www.justgiving.com/joME

Or Text JOME85 £5 (or any amount) to 70070

"It's Real, it's Physical, it's ME"

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.

Different types of tired

Through having M.E. I have come to learn that there are different types of tired.

In everyday life;
There's the satisfyingly tired where you've been busy, exercised, achieved things and are then worn out by the end of the day.
Then there's the frustratingly ill tired where you can't move no matter how much you want to get up and do things you just can't.

When you add M.E. into the mix it gets trickier. For when you are satisfyingly tired through having done something, perhaps too much, you're body aches and the chances of actually being able to sleep well are greatly reduced.
Then when you are ill tired, although now perhaps able to sleep no amount of sleep will fix this state of tiredness.

On a slightly related note, I bumped into a friend yesterday who I know has been feeling under the weather lately so I asked how she was feeling. She was about to answer then stopped herself and said she really can't moan to me about it. I realise I have been particularly active in advertising my M.E. (With last week being M.E. awareness week), but I believe everyone has a right to moan if they are feeling rubbish no matter what the circumstance.

Everyone is fighting their own battles and your level of hardship is still hard to you even if it feels insignificant next to someone else's.

Some of my M.E. friends have it a lot worse than me, they struggle day to day with severe M.E. are housebound apart from hospital appointments, but still offer unconditional support to me and others with my level of the illness even though we are significantly healthier.

Having M.E. doesn't make you uncaring for others with minor ailments, if anything it has made me even more mindful of looking out for others feeling rough, and offering them my care and attention, probably because I know only too well how lonely it is to be ill.

"People will forget what you did, people will forget what you said, but people will never forget how you made them feel" - Maya Angelou

Fighting

Today I am feeling very sorry for myself. Having been hit on Monday by a 12 hour tummy bug I still feel horrible.

Last year I had a mild tummy bug and it set me back months on my recovery. So today is filled with uncertainty on top of the wobbliness and exhaustion from doing the smallest of things.

There have been tears every time I think about the coming weeks or even days. Trying to figure out how to make what is usually doable happen now that it is not.

I hate this struggle. But I will fight on and I will win.

But it is not all doom and gloom. My nearly 4 year old has done a lot to make me laugh today. My friends on Facebook have also done well at making me laugh - my world would be very lonely without my virtual family, some of course are real family, some I have never met but are just as supportive.

A very short post today, but I've been trying and failing to write something for a week now!

Anxiety

To me anxiety = a nervous, scared feeling, extensive worry.

That was until I started reading Matt Haigs 'Reasons to stay alive' which is his personal story of depression & anxiety.

The way he describes anxiety made it take on a whole new meaning to me and brought into light some of the odd symptoms I sometimes feel.

In the early days of this relapse it was suggested I be driven to the nearest town, escorted into the opticians for a second opinion then driven home again. I couldn't even comprehend the idea of doing this. A normal activity, but it filled me with dread so much that I insisted it was not necessary and it didn't happen. This I knew was anxiety, it was a very clear irrational fear.

There have been other times in the last 2 years that have been less clear but I can now see were probably also anxiety and not just random M.E. symptoms.

I recall trips into town where every time I walked into a shop I felt dizzy and like there was not enough air. 

On another occasion I had to walk to get my daughter from school as my trike had broken and the world seemed to spin with every step, I had a kind of tunnel vision, everything was a bit blurry.

Sometimes when collecting my daughter from school I stand in an alley in a que, I often feel claustrophobic standing there again like there's not enough air, I try to make small talk with whoever is standing near by as it helps take my mind off this strange feeling.

I've also realised recently that making plans makes me anxious. Gives me far too much time to think about the event.

I have just yesterday made plans to meet with a friend without the kids for a cuppa and a catch up in town at the end of the week. I am thrilled, it will be the first time I've done that in over 6 years. But with that excitement comes so much anxiety.

Will I be well enough to go, will I be able to hold a conversation without sounding stupid (adult conversation is something I lack). 

I sometimes think short notice or spontaneous plans would be better for me because then I don't have any time to worry.

A friend the other day said they were passing but didn't want to pop in unannounced. I said next time please do! If I have no notice of guests then I don't spend far too many spoons trying to make myself and my house presentable. I know people tell me not to tidy on their account, but if I know someone is coming then I do rush around, partly because I am anxious about them coming!

But it is important not to confuse my anxiousness about people coming round and about making plans to go out as a desire not to do these things. I do actually love being social, going out, catching up with people.

In the last year I have learnt that anxiety, excitement, emotion if not kept in check are just as exhausting on the body as walking, talking and eating. 

Pacing takes on a whole new significance when you add these into the equation. 

How do you pace your emotions & excitement? I think that might be a question for another day.

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.

'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?

Being an M.E. mum in a busy world.

Life for kids today can be so busy. School, after school clubs, dancing, sports, rainbows, swimming, parties. There seems to be an endless stream of activities that all the kids in my child's class are doing, but not mine.

I have M.E. because of this just getting my kids to and from school 5 days a week at the normal times is a challenge.

I have never sent my girls to dance classes or after school club, and never even considered any of the other options. Simply because I can't commit to being able to get them there and back every week.
I don't drive, I ride an electric tricycle, which has it's limits for distance, but also I would not want to ride it in the dark which in these winter months rules out anything after school.

It breaks my heart when my eldest receives a party invitation for a school night party as I always have to say no. When the invite comes in we talk about it together and I explain why she can't go, then often it is forgotten until the day, when she comes running out of school so excited saying; "Mum it's so and so's party today am I going" and I have to say no all over again.

My eldest is 5 and personally I feel like she gets enough from school. She is generally exhausted after a day at school and I wouldn't dream of sending her out to do additional courses. But because it's what everyone else does it makes me feel like I'm letting her down.

At home my kids watch a lot of tv. I wish they didn't, I wish I could be more active with them and initiate play, but I can't and I often find tv is the only way to instil order. Though it also makes them feel like they have a right to watch it all the time, which is a battle!

At the end of each weekend I often wonder if we have done enough. Other children go back to school Monday with exciting tales of outings, clubs, experiences. I often wonder what mine go back saying... I had a wonderful weekend, I helped to dust the house, washed daddy's car and watched Chitty chitty bang bang for the millionth time...
We do go out occasionally on the weekend, but usually only out of necessity, a trip to the shops or the library.

When school holidays come around I try to have a certain number of activities planned, often art and craft ones. If I enter the holidays with no plans then by the end of the first day both me and the children are tearing our hair out! There has to be a plan, no matter how basic. Sometimes these plans to awry. They can get through every activity planned for the day by 9am, or not show any interest in what I thought was a great idea.

But when you have M.E. Sometimes it doesn't matter how good the plan is, you just can't do it.

Anyway, I'm not entirely sure what I was trying to achieve with this post, other than pointing out the guilt I feel as a parent. Though I do know I should not feel guilty, I do my best for my kids and that is all they need.

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.

50 things I love...

Here in no particular order are 50 things that I love
- please note I haven't forgotten my family but think they would need a list of their own.

1. Chocolate (Cadbury or thorntons)
2. New socks
3, Toast with butter
4, snuggly jumpers
5. Cosy slippers
6. Pjs
7. Being connected to the world
8. Music
9. Making pretty things
10. Sleep
11. Cuddles
12. Ice cream
13. Walking (before I was ill)
14. Doodling
15. Giving gifts
16. Receiving gifts
17. Dancing
18. The beach/being near the sea
19. The sunshine
20. Warm but not too hot weather
21. Listening to the rain
22. Chapstick lipbalm
23. The smell of freshly cut grass
24. Keema with pilau rice & naan bread (without dietary restrictions)
25. Showers
26. Watching neighbours
27. An uncluttered house
28. The colour blue
29. The colour purple
30. My tablet computer
31. Audio books
32. Tombolas - even though I never win the thing I want
33. Parcels in the post
34. Scratch cards
35. Free prize draws (though I never win the big ones)
36. Helping people out - even when it's not the best thing for me
37. Bailey's with plenty of ice & perhaps a dash of cointrau
38. Soft slightly warmed hot cross buns
39. Actually having energy to do stuff without payback
40. Good feedback on my work
41. Holidays
42. My big spider tea cup
43. The right flavour teas at the right time of day.
44. Shopping for anything other than clothes
45. Finishing projects
46. Clean bedsheets fresh off the line
47. Randomly chatting with my online friends
48. People knowing what I want without me having to ask (I hate asking for things)
49. Looking at clouds
50. Pretty sun sets

Sometimes I think it is important to think about the things in your life that make you happy and make that list!

What would be on yours?

Birthday!

A lot of people don't like birthdays, some pretend they aren't happening, some get utterly miserable at the thought of being another year older. 

I like birthdays. It is proof that I have survived another year which I think is something to celebrate, especially with M.E. 

When every day is a struggle having a birthday is like getting a medal for getting through that year!

Being 30 is really no different from 29. This year I had my party back in November so as not to risk snow & post holiday blues from stopping people coming, I had all of my presents either back with the party or at Christmas, so today there are only a couple of cards to open, but I am happy, I have my family around me and I am a lot healthier than I was last January!

My grandfather turned 94 on Christmas Day. His take on old age is "Don't do it".

I can appreciate this. Getting old often isn't dignified, and for someone as independent and strong willed as him it must be incredibly frustrating.

- Much like having M.E. is at times.

Anyway enough of my chatter - must get back to my noisy children for extra birthday cuddles!