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

Kickscoot the Coast: Walmer - Capel-le-ferne

Walmer to Capel-le-ferne.

Well as you may have noticed I didn't quite make it to Folkstone!

That was the most physically, mechanically and mentally challenging route so far. Very hilly. Not well signposted.

Coming out of Kingsdown I asked a local which way the cycle route went as there were no signs, he told me which way it went, then gave me a nicer route to take along the cliffs, which was great, completely off road and some nice coastal views.

Next step was getting into Dover which I had been worried about, but actually this proved fairly straight forward too, well signposted choice of cycle routes. However getting out of Dover again proved difficult. All the signage stopped, looking at the map was telling me where the path should go, but I couldn't find it.

I ended up on a national trust coastal path up over the cliffs out of Dover. Which gave fabulous views, but was unrideable. Also at the far end of this path where I found the cycle path again (hoorah), there was a swing gate. No way could the scooter get through. I stood for quite a while on this deserted path wondering how best to proceed. I couldn't bear the thought of going back the way I had just come so I decided to find some super strength and lift the scooter over the fence and back onto the cycle path!

Next followed lots of very bumpy off road path ways, and a few more hills for good measure.

By this point I was pretty knackered from all the walking up hills and bumpy path ways and the scooters battery was reading empty so sadly I had to stop with Folkstone in sight.

There were points on today's ride that made me wonder if I am completely crazy for undertaking this trek. But also some fabulous views amongst the mist which is ever present on this part of the coast.

It will be a few weeks before I can try the next section due to birthdays and new bathrooms. I haven't been completely put off today just a little disheartened.

If you would like to you can sponsor me here.

Here are the links to the previous sections of this trek;

Whitstable - Broadstairs
Broadstairs - Walmer

ME Awareness 2017

It is that time of year again, ME Awareness week. In previous years I have been a princess, a superhero, "gone blue", and donated various handmade items to auctions and raffles. This year I am not doing any specific fundraising, apart from my on going "Kickscoot the coast".

This year I would like to talk to you about hope and improvement.

I am a great believer that when there is hope there is a way and that it is so important for those suffering with ME and their carers to always have hope and never to give up.

If you or your loved one has ME you have to be in it for the long haul. There is no quick fix. It is tough. It is brutal. Basically it sucks big time. But it is also a journey filled with ups and downs, highs and lows. Sometimes the downs feel bottomless and the highs short lived, but you must never give up.

I am lucky to find myself in a fairly good patch at the moment. Recently I have been looking back over the last day or week thinking I couldn't have done that a year ago. Which is such a tremendous boost!
I know this is a high and unlikely to be maintainable but I shall enjoy it while it lasts (and be thoroughly miserable when it ends!).

But even through the regular highs and lows I can see an ongoing improvement. The lows aren't as low or don't last as long, the highs are higher and higher. I wouldn't go as far to say an end is in sight, but improvement is there all the same.

The specialist I saw when I was first diagnosed (some 16 years ago) used to ask me to measure my health in %, 0 being bed bound and 100 being fit and able to work full time. I would say at the beginning of this relapse (4years ago) I was down as low as 20%, now in this particular high I think I'm around 70%. Which, written down like that is huge improvement!

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.

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.

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.

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!

Be the change you want to see in the world

This quote means so much. It is so true.
Everyone complains about the world today, about how people don't have the respect for each other that there used to be, about how everyone is looking out for themselves and not others. Yet at the same time a lot of the people complaining don't go out there and try to change things.

Granted one person can't change the world, but one person can show others how to change which in turn could change the world.

If you go out there today and smile at people, say nice things to them, donate something to a food bank, do a good deed, I guarantee you will feel good and you will have made others feel good. And perhaps just maybe the other people touched on your journey will also go out of their way to make a difference.

There are so many small, simple ways you can change the way you live which will help so many people. Being kind doesn't have to cost anything.

Being ill has made me realise just how lucky I am to be alive, to have a warm safe home for my family, to be able to get out of bed everyday and to know that I can feed my family.

I am a firm believer in random acts of kindness. I have been researching ideas of things to do with my kids through advent, 1 random act of kindness for each day to try to teach my children that giving isn't all about presents and that it can be just as rewarding as receiving. I don't think my 3 year old will understand, but I think it is a valuable lesson for my 5 year old and I hope to turn it into a yearly tradition.

All through this year I have sent out random parcels to people, all with the intention of raising a smile, some items needed, all were appreciated. I have more in the pipeline and hope that these too will be received with a smile.

Could you smile at someome today? Compliment them? Lend a shoulder if they look in need? Could you donate something to a food bank (they are even appealing for presents if you have anything you could re-gift)? Could you donate some old bits and bobs to a charity shop instead of putting them on eBay? Could you volunteer some time to help a neighbour?

So think about it, what could you do today that could change someone else's day or even life?

Party day!

I'm awake. It's 5.30am, this is pretty normal for me, in fact I've done well to sleep in this long, was awake from 3.30am yesterday.

I  am so excited that it's the day of my party. I have butterfly's in my tummy and everything. But today of all days I need to keep my emotions in check. With excitement comes stress, adrenalin, anxiety - all ridiculously draining emotions.

Today will be busy. Even if I just sit down and delegate tasks it will still be busy with people running around, lots of things to remember, and that's all before we get to the party.

I'm fighting a virus, yesterday I felt pretty rough, not helped by the 3.30am start. I had this nasty feeling like I had a scarf tied around my neck too tight and all day I kept forgetting words and was really struggling to put sentences together.

I hope today for he party at least my cognitive functions will pull themselves together and all this achy ill feeling will be put on pause.

I know already that I will look and behave like a normal well person, in fact I expect I will hear 'you're looking well' more than once today. But come 6pm when everyone has gone I will collapse into a heap and barely be able to speak.

It will be worth it, I will have a great time. I just hope the payback doesn't last too long...

Anyway, back to trying not to feel too excited. 

Wish me luck for today friends!

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.

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.