No room for spontaneity

Well I did something really silly. I went out and had a few drinks... I thought that I could be 'normal' for the one night, you know the way that other people are after they finish work on a Friday and as I had been feeling somewhat better with my ME, I took a chance. Oh did I pay for it. I was completely wiped out on Saturday and the last few days my head has felt like it's stuffed with cotton wool, the dizziness returned and my temperature gauge has been completely erratic. So I've taken a few steps back again but I'm hoping that a return to pacing, lots of sleep and healthy eating will help me get back on course. I hope...

It's tough to think back to a great deal of my twenties when all my friends and colleagues were off having exciting adventures and going on fabulous nights out that I would either not go to at all or tag along knowing full well that i couldn't keep up with the pace (although I would try and pretend that I could) and would feel absolutely horrendous for days if not weeks afterwards.

Although I have a lot to be grateful for (in the main my ME has been fairly mild) it still robs you of your life. There are lots of things I would have liked to have done, places I wanted to go and stuff that I missed out on by being so consumed by my every symptom and the consequences of certain behaviour.

However I believe that without getting unwell, I wouldn't have pursued the career path I have chosen and shifted my thinking to look at life in the way I do now which, despite my rant above, is actually pretty positive!

I know myself that to be as well as I possibly can, I should live within my limits but surely sometimes you have to break out of that box....

Looking after little ones when you are more than just tired.

The last few days I've been feeling as though as I've been running on adrenaline. A lot of the general population suffer from this at bedtime but fellow ME sufferers will understand the 'tired but wired' feeling that we get during the day too. Work has also been extremely busy which has meant a few early starts to ensure I get everything finished. That's always the downside of working part time... 

Earlier in the week I was struggling a bit to keep my little boy busy and it reminded me that I had started writing a list of useful tips at the beginning of the year that I had never got round to finishing. Here's some ideas for looking after little ones when you are unwell. I would be interested to hear feedback on what I've suggested. 

During pregnancy, labour and the baby stage: check out http://www.mecfsparents.org.uk/articles.html

For toddlers/ older children:

Food

• Have a small supply of child friendly ready meals for days when it is too difficult to cook.  
• When you are cooking, make more and freeze the extras
• Pasta is a good option, just needs heating and you can add frozen/tinned veg.
• If you can, encourage children to eat fruit whole so that it doesn't need lots of prep i.e. cutting up apples or try and prep fruit and veg at a time when you can manage and pop in the fridge for later. 

General;

• Try and have a good routine - bedtime, meal times etc as this can help with sleep patterns and behaviour.
• If it is easier, then do bath-time in the mornings or at a time when you feel able to manage. (Bathtime is sometimes an easy way to play and keep children occupied as you can sit next to the bath while they splash around). 
• Ask friends who have kids/ grandparents/ other relatives if they can take your children to play at their house for a while
• Have a reward chart for helping i.e. staying in bed, putting clothes in the washing basket, getting dressed etc
• If you have the finances, then some time at nursery may help you to rest. Also ensure that they are signed up for a funded pre school place so they can attend their local learning centre for a few hours once they turn three.
• Classes that they can participate on their own like a gym class or swimming can give you 45 minutes or so to sit and rest. 
• Playgroups may also be helpful but there is usually a requirement that you supervise for a session every few weeks so you need to bare that in mind.
• Try and keep on top with the housework when you are feeling a bit better i.e. washing etc. so that if you have a bad spell, there are still clean clothes for everyone to wear!
• Get in touch with social services, they may be able to set up a carer or offer some support with childcare. However this does sometimes involve payment.

Play;

• Sticker books and reading can be done while laying on the sofa.
• When doing painting have a messy mat which you can roll out and roll away and then there is little clearing up to do...also good for things like play doh, where you can sit and watch and talk about it without having to do too much
• Have a good stock of child friendly films and if need be, have a tv in your room or take a laptop with headphones so that they can watch while you rest 
• Don't be afraid to have a few iphone/iPad apps. If you can make them educational then you will feel less guilty and you can restrict the time doing it.
• Make cakes but buy the kits which require little help from an adult.
• Find a good indoor soft play centre, so that they can run off steam and you can watch or read or just sit down. It is sometimes better to have another child or parent and child with you so they can occupy each other as otherwise you may find yourself drawn into the softplay...
• When they are school age, there may be a YMCA or good holiday club they can attend for a few hours a day. 
• Have things like Lego and puzzles where you can lay on the sofa while they sit on the floor and play and you can then talk to them about what they are doing.
• Have different colour coded boxes with activities/ toys in them for days when you have more energy than others i.e. green day could have more interactive/ energetic activities in it than say a red day. Children then begin to understand your limitations for that day.
• If you have a garden then let the children play outside with their toys while you sit on a chair and keep an eye on them (on cold days wrap up warm!)

Relaxation and a little bit of exercise

Well I had my appointment with the ME consultant who was very understanding and confirmed that yes my symptoms have been caused by ME for the last ten years. He's doing some checks for auto-immune diseases and I have a follow up appointment in October when I may be referred to the ME clinic, which consists of emotional support (CBT) and help with encouraging my body to do a bit more (graded activity). These two approaches are pretty controversial but I'm willing to give it a bash considering that my health has been a bit better and I would really like to start incorporating some exercise into my week.

We had another camping trip at the weekend. This time over to the west coast, just north of Stranraer. Not a part of the country I'm familiar with but it was very pretty and good fun. Campfires, marshmallow toasting, gentle walking and lots of reading; very relaxing! I'm not sure why but I do tend to relapse with the dreaded sugary and unhealthy snacks when I'm away so back on the wagon again today!

Keeping calm in a busy city

I've been pretty good with mindfulness and meditation over the last week. I downloaded an app which you can get some more info on from:  http://www.getsomeheadspace.com/  Basically its 10 minutes for 10 days. It's been very helpful. Also from today there is the new Deepak Chopra and Oprah 21 day meditation, this time focusing on relationships. I enjoyed the last one so am going to give this a bash. http://www.oprah.com/own/First-Look-Deepak-Chopras-21-Day-Meditation-Challenge-Video

Tomorrow I have an abdominal scan in relation to the haemachromatosis to check there is no organ damage. I'm sure it will be fine given that my iron levels are still low. The main worry is that I have no one to look after my little boy so I'm hoping he can occupy himself in the room for 30 minutes while the scan is done...

I have been doing pretty well on the healthy eating front. Last week, I made a few salads including smoked mackerel, apple and fennel with a yoghurt and lemon dressing which was very tasty. Yesterday I treated myself to a 'skinny' eggs benedict; muffin, a few asparagus spears, a poached egg with a drizzle of olive oil and some shavings of pecorino - yum!

At the moment the Edinburgh Festival is on so the city is extremely hectic for the next three weeks. Although at times it can be exhausting pushing through the crowds (especially when you are trying to get to work!) at the same time, it's great to get involved. This morning me and the boy are off to see Tiddler and other terrific tales. Apparently its sold out so I have high hopes for it!

Weekend away

So it turns out that although I have haemachromatosis, my iron count is fine at the moment so I can carry on eating red meat and basically enjoying life. It wont be until my later years that I may start to have problems but it will be closely monitored. Back to the drawing board.... My GP has now referred me to the 'ME specialist' so it will be interesting to hear what he has to say.

We have been away camping over the weekend to a lovely place in Fife called the Pillars of Hercules http://www.pillars.co.uk/ (an organic farm with a tasty cafe and a chilled out vibe).

We spent the day at St Andrews where my little boy ran wild on the beach and was even allowed to go out for a little while on a canoe - cue very excited 3 1/2 year old!

We also checked out the local ice cream shop which had a whole array of ice creams - spoilt for choice! We ended up choosing sky blue (marshamallow flavour) and butter pecan mmmmmm....

It's lovely to get away for a weekend, especially in the nice weather. It did feel like a proper rest.

 Just what the Doctor ordered! 

Taking control

For a few days my mood started to dip again. I think it was due to feeling so run down with fatigue and headaches caused by sinusitis and hayfever and these recurrent mouth ulcers I've been having for the last six months. What was annoying was that I've been very disciplined the last week; going to bed early, eating well, no alcohol and pacing better so it was rather frustrating. Then I decided yesterday that only me could get myself out of that negative head space and so I've been incorporating mindfulness into my day when I can. Leading on from the ten ways to make yourself happy in my last post, I've also been more considerate towards others; letting other people in front of me when I'm getting on the bus, letting cars out at junctions (which I tended to do anyway but sometimes was so distracted by my own feelings that I forgot). I have to say that it feels good and has helped to shift my thoughts into a more positive frame of mind. I realised the last few days, I was being quite self-pitying. I came across a post on another blog which really helped put things into perspective:

http://currankentucky.wordpress.com/2013/06/14/reluctant-acceptance/

The author talks about coming to terms with living with me/cfs and how although the condition has no cure (yet!)  the control lies with the individual i.e. if you're not looking after yourself then you are only going to feel worse. I believe it's really important to nurture both your physical and mental health as they are interconnected.

Funnily enough today has been a much better day....

Happy city living

So I'm now a city girl and so far I'm enjoying it. Maybe because I know it's time limited. It's great to be able to step outside and have lots of nice shops, delis and boutiques on my doorstep oh and it's a 20 minute commute by bus to work, which after my last hour and a bit commute is blissful! On the downside,  it's expensive living here and I miss the garden, plus the shorter commute means I don't get as much reading time to myself. However the flat is smaller so less cleaning and tidying to do and I have a size-able kitchen which I is amazing after the boxy kitchen in the last house. There's also a lot of green areas around. The photo below was taken after a fifteen minute walk from our flat. You can see over the whole of Edinburgh.

Health wise, I knew I would be struggling a bit after the move and so I've been resting more which thankfully seems to have paid off. I have my initial haematology appointment next week so feel a little apprehensive but am keeping positive. I continue to do meditation although for shorter times and usually before bed, which isn't always the most restful time to do it but I still feel it's beneficial. I've also been more aware of my thoughts and actions and practising mindfulness, something I would like to explore further.

I came across an interesting website http://www.actionforhappiness.org/10-keys-to-happier-living  which lists the ten ways that have been proven to make your life happier and more fulfilling and how you can incorporate these into your daily life. I'll let you know how it goes...