Blessing 53 – Trying to appear “normal” – Balancing Holidays From Home with my ME/CFS. February 22, 2012

I don’t really talk about my life with ME/CFS, it doesn’t seem relevant. That seems pretty dumb logic since the whole idea came from being ill. I do tell people how I came up with the virtual holidays, I have to, just to explain how the six years spent in bed gave rise to the idea of virtual holidays and parties. I gloss over the reality of how hard it was and how hard it still is, because I don’t feel like it’s important, at least not to Holidays From Home and does anybody really want to know anyway? I was worried that people might think I was using a sob-story about being ill for eighteen years, just to get attention, when that’s not it at all. I want to use those eighteen years to help other people going through similar things. I want to help them avoid some of the suffering, hurt and frustration that I’ve had to deal with. I’ve also been worried that Holidays From Home will be judged, seen as less than somehow because I’m not “normal” and I can’t do everything that everybody else can. I’ve seen my illness as a weakness and I assumed that other people would too. My illness is part of my other life, the part that people don’t see and up until now I have tried very hard to keep the two things very separate. People assume that I must be better now, that everything is back to normal and that’s my fault because I hide my illness. I don’t tell people that I can only spend an hour or two a day on Holidays From Home, because I feel like that says I’m not trying hard enough, or that I’m lazy, not that I physically can’t do more without making myself very ill. If people call in the afternoon, when I’m having my three hour sleep, that I need just to get through the day, then I get my Mum to tell them I’m out or in a meeting. Oh yes I work from home and still live with my Mum because I’m not well enough to look after myself. That just feels so embarrassing to admit. I work hard to appear “normal” because somehow appearing to be disabled seems like a crime, like admitting that I’m not as good as everyone else. Maybe that’s down to society, or even my own prejudices. The truth is I’m still pretty much housebound and life is a constant balancing act between what I can physically do and how much resting I need to do, to make sure that I don’t relapse. I have become very good at pacing, the skill of balancing out activity and rest periods, so that you don’t use up all your energy and make yourself ill. I don’t always get it right and sometimes I ignore the signs because there’s things I need or want to do. I pushed myself for the virtual Valentine’s Day and I’m now suffering the consequences, having to take some time off to rest and let my energy levels and body recover. I’m not complaining, I knew what I was doing and it’s worth being careful so that I start to feel better. I use the majority of my energy on Holidays From Home because I love it, it’s fun and rewarding and even if it is only for an hour, maybe two a day, it’s still worth the hours of resting and sleeping I need to do to be able to cope with it. The hardest part I find is accepting my limits, I wish I could be doing more on Holidays From Home, my to do list is long; but my dreams and ideas are so big that it’s really hard I push myself. It’s frustrating when I’m so fired up with ideas of what I would like to be doing for the virtual London holiday and the Diamond Jubilee celebrations I have planned. I get annoyed that my body can’t keep up with my mind. I don’t want to admit, even to myself that I’m not able to do everything that everyone else can; but I do know that I have strengths because of my illness, insights that make me and Holidays From Home stronger. My illness is not my choice, it’s not who I am; but it is a part of my life. If I could get rid of it I’d do it in a heartbeat; but until they find a cure then I need to stop pretending it doesn’t exist. I’ve been reading a lot about being who you really are, accepting it and not being ashamed, so I guess this is me putting it out there. My name’s Claire, I have ME and I won’t apologise for it anymore, even to myself.

Blessing 52 – Gradual Progress February 21, 2012

Today feels like a rather backwards blessing, because I haven’t been feeling great this week. I pushed myself to do the Valentine’s Day Party and I’m suffering with my ME now. It’s nothing new, nothing I haven’t lived with for years; but it is frustrating as I didn’t really do that much – not in the normal sense of things.

The blessing is that I’ve realised I don’t normally feel this bad. I still have low energy and can’t do as much as I’d like. I still sleep for three hours in the afternoon and have to calculate how much energy I have for every little thing, always pacing; but I don’t have this background exhaustion the whole time anymore and that is pretty amazing. I’m pleased to realise that things are changing, even if it is incredibly slowly. It feels hopeful and like I’m moving in the right direction. So today I’m grateful for knowing I have been feeling better and that I will be feeling that way again, I just have to be ultra careful for a while. I’ve done it once, I can do it again!

By the way Happy Shrove Tuesday / Pancake Day! Also happy 2102 2102!

Also today’s Shaake was California Raisin – raisins, cherries and granola with strawberries instead of banana. It was so good!

 

Blessing 51 – Finding a place where you belong February 20, 2012

Tonight I went to my first meeting at a new Norwich Network – it’s a new version of the Wonderful Women group I was looking forward to joining earlier in the year. I was nervous; but excited too. I had high hopes, something about the group just felt right. I was not disappointed!

I was greeted by a group of lovely people, who were all warm, friendly and welcoming. I instantly felt relaxed and at home. The first meet up was just a social with an introduction; but I got so much just from that. People were so kind and enthusiastic about Holidays From Home, it was really encouraging. They had ideas of things I could do and suggestions on how I could use Twitter more. I was caught up in their excitement and it was lovely to hear about other people’s businesses too.

The next meet up will be on goal setting for 2012, which I think is going to be brilliant. I love the fact that everybody has a unique business; but they all have similarities and the different experiences and backgrounds of people works well together. I enjoy being in contact with people who are motivated, have passion and big ideas. I believe that you can achieve so much more with the support, encouragement and enthusiasm of others, than you can on your own.

The group is exactly what I’ve been looking for, with people I can see becoming good friends, not just contacts. I’m exhausted now; but so grateful that I found them!

Blessing 50 – A Shaake a day February 19, 2012

Wow, can’t believe a) I’m up to fifty blessings and b) we’re fifty days into the year. I feel like my blog post should be something deep and meaningful today; but I’d already decided I was going to blog about getting my first Shaake today as part of my competition prize. Mum and I popped into the city to get it.

I actually felt a bit embarrassed going in, I’m not used to getting something for nothing and always feel I have to earn everything I get, through hard work, sweat, tears and stress; but I think my amazing mentors would tell me that is a very stupid concept and one that I need to get rid of. If I expect everything to be hard before I see rewards then it will be. I think it’s time to appreciate that not everything has to be a struggle and things can come easily, it doesn’t mean I don’t deserve them or haven’t earned them, that’s just the way they come into my life, so I should be grateful. Oh my, there I was saying I wasn’t going to go deep!

I went into Shaake and was presented with a  little card with my name on it and a calendar of the next thirty days – each time I have a Shaake they’ll cross one off. I was really pleased and felt like a kid seeing my name on the card. Today I had a “Totally Posh” which had Lindt chocolates and Ferrero Roche in it – it was AMAZING! So good and a real treat.

Shaake Day 1 Totally Posh - slightly windswept!

Then Mum and I drove to this great look out which has an amazing view over the city, so we could relax and enjoy it. The weather was perfect, blue sky, puffy clouds, bright sunshine. Spring was definitely in the air. We shared the Shaake and just sat enjoying the view. It was brilliant, a great day.

View over Norwich

 

Blessing 49 – Cuddly Babies February 18, 2012

Tonight has been my monthly get together with my ME friends, which was lovely, if a little hectic. We had pancakes in honour of Shrove Tuesday next week. They were really yummy, one of my favourite things to eat and incredible considering they only have three ingredients in them. I traditonally have them as my birthday breakfast which I’m already looking forward to!

My friend brought her two children and I got to have a lovely long cuddle with her little boy Dexter, who is now five months and is starting to look like a proper little person, as opposed to the uniform cute baby look that all babies seem to have. He was so soft and warm, totally gorgeous. His smiles lit up the room and totally melted my heart.

I was happy to just sit with him on my lap. He was very chilled and contentedly sat while I turned a brightly coloured maze toy over and over, while he watched the balls tumble. I know he’s not always that easy and that he can be a real handful; but I thoroughly enjoyed being an aunty for the evening.

When Dexter’s like that he can lull you into the false belief that maybe you’re ready for children and I saw the broody look in two of my friends and probably in me too, if I’d looked in a mirror. Fortunately his big sister is full of beans, into everything and has more energy in her little finger than I do in a whole week. She kept my hormones in check and reminded me that I’m not yet ready for babies of my own; but with more cuddles, I’m definitely getting tempted.

Blessing 48 – Winning Competitions! February 17, 2012

I am the first to admit that I’m a lucky person, I take the time to enter competitions and while I don’t win regularly, I do win more than a lot of people – much to my brother’s disgust. I normally win something in a raffle – in fact it has got to the point where I’m careful where I buy tickets for because it can get a bit embarrassing, I didn’t get any when I visited the WI as I thought it wouldn’t look good to go in and win prizes intended for members. I went to the bingo once and won three times, I felt a bit guilty and everyone was glaring at me a bit!

I have also won a few bigger competitions in the past, a denim jacket from the film Corrina, Corrina, fruit baskets for a year, I even won tickets to the Brits with a night’s stay in a hotel which was the coolest and biggest prize I’ve won so far. I’m still aiming for an iPad and a luxury holiday abroad though!

Tonight I found out that I’ve won a month’s worth of milkshakes at my favourite place in Norwich. It’s called Shaake and does the most yummy shakes and smoothies I’ve ever had. They do fruity ones as well as chocolate ones and it’s a real treat to visit, so now I’m planning when I can go in. I won’t be able to make it every day (it’s one shake a day); but I’m hoping to make it in a few times. Even once or twice will be lovely. I’ve had my eye on their real chocolate hot chocolate, so I hope that counts too!

Not sure it really fits into my raw food ideas; but I had intended to have more juices and they do have protein powders you can add. I’ll try to be good and have the fruit only ones – well at least some of the time, since my ultimate favourite is strawberry and Snickers….. mmmmm!

I’m feeling very happy and smiley right now, it’s a lovely surprise and one I plan to enjoy!

Blessing 47 – Raw Food Revolution February 16, 2012

Everyone seems to be talking about raw foods. I’ve been hearing about it for a while, from a friend and various contacts; but it wasn’t something I was really sure about. How can raw food taste as good as cooked? How can you substitute all the things like butter and flour and still get something like a cake?

This evening my WI had a lady from a local cafe who do raw, vegetarian, vegan and organic food – things that I’d automatically avoid assuming it would all be beans and lentils, tasteless and cardboardy.

I have heard about the benefits of a raw or living diet; but I have to admit to being slightly sceptical, in the past I’ve done lots of exclusion diets to help my ME and none have made any difference, for better or worse. Diet has never affected my ME one way or the other, so I’ve stuck to a fairly balanced one; but know I could be better with more fruit and veg – I struggle to get up to five a day.

I went with an open mind and found the talk really interesting. I particularly liked the sound of making your own almond milk and having it in hot chocolate which sounded yummy! The lady also did a demonstration of a chocolate tart which contained avocado, dates and cocoa powder. The ladies on my table were as reserved as I was about the recipe; but we were all willing guinea pigs. It was actually really good, the filling was rich and creamy and could have been dairy. The fruit and nut crust was a little chewy and I must admit to thinking it would have been better in a nice shortcrust pastry! Not the point I know; but old habits…

The lady did say that she recommended people take it on gradually and that green smoothies/juices were her main recommendation. That was one of my resolutions this year which has sadly not happened – partly because the juicer was in the garage; but it’s out now, so there’s no more excuses. I’m going to try one this weekend and see how I get on.

It would be lovely if I could find foods that would give me a bit more energy. I don’t think I will ever be able to give up on the treats that I love; but I would happily add in some extra things into my diet. I’m off to Google Green Juice recipes without banana. I’ll let you know how I get on.

Blessing 46 – Celebrating Achievements February 15, 2012

Why are we so bad at appreciating our achievements? Why do we find it so hard to celebrate our successes and yet so easy to beat ourselves up with our failures and the things we haven’t done?

Whenever I achieve something I dismiss it. I think “Ok, so what? What’s next? There’s so much more to do.” I never sit back and think “Wow, I just did that. It really happened. All the hard work, all the stress, time and energy really did come together.”

I should be jumping with joy, cheering, celebrating; but instead I’m moving onwards, ever onwards. I guess it reinforces my post about not being in the moment always running to or from something. I can’t let myself stop, even for a second because all I can see is what’s still to be done. That’s sad. No, it’s downright tragic. I’ve had some incredible accomplishments in my life and I’ve not really appreciated them. Partly because it’s just not done, for fear of judgment by “Society”, because it’s implied if you celebrate your success you will become big-headed and arrogant – Horror of horrors! There has to be some middle ground, a place where you can be happy, grateful and pleased, without worrying what other people think or how it impacts on them – which it shouldn’t it’s not their achievement it’s yours. They weren’t the ones putting in all the time and work, you were. You’ve earned the right to feel happy about what you’ve created/made happen/achieved.

I was at a mentoring group today and we had a victory sheet to complete., of things we had achieved. Some people found it really hard to be able to think of anything and it actually needed people in the group to point out the things that they had done, for them to stop and realise the successes they have had, almost without realising it. Seeing their faces light up was beautiful.

Maybe that’s the secret, that you need supportive people around you to appreciate what you’ve done and to make you stop and take it all in. People who don’t judge you; but revel in your success with you. My aim is to build a supportive group like that, a place that we can turn to each other and recognise the amazing things that each one of us is doing and then celebrate with kind words, warm gestures and maybe a slice of cake or two.

Blessing 45 – Friendship Rules at the Virtual Valentine’s Day Party February 14, 2012

Today was the virtual Valentine’s Day party and it was fabulous. I woke up with a bit of a wobble, feeling like why am I doing this, I’m tired and I’ve kind of had enough, I wish I could just forget it was Valentine’s Day – the exact feelings I’d created the party to prevent other people from feeling.

I was greeted by a fab bag of presies from my Mum, including a heart mug, some jammie dodgers, heart sweets and a necklace. It was a lovely surprise and just having somebody show they cared meant a lot. The first sign that love comes in many forms.

I then threw myself into the virtual party and have had such a lovely time, it’s made all the hard work worthwhile. The best part has been the interactions online with the other party goers. The general consensus was that the Cupid style archery got the thumbs up for being both romantic and anti-romantic at the same time. The virtual rose garden was a hit with people posting their own photos of roses in their garden.

It was so good to be able to chat to people who understood, who appreciated what it was like to be home for Valentine’s Day and we talked about anything and everything from the virtual party, to life in general, hobbies, family, all the usual things you would talk about at a party. We may have been typing; but it felt like a real conversation, a proper meaningful interaction between people all over the world. I felt surrounded by old and new friends and that sense of loneliness, so common with being single and alone at Valentine’s Day, slipped away somewhere around 10.30 am this morning and never returned.

I feel happy and relaxed now after a day with friends. It’s the most fun I’ve ever had on Valentine’s Day and I am already looking forward to next year.

Blessing 44 – Epiphany Moments February 13, 2012

I love those moments where things you’ve been thinking about on and off suddenly all come together and make perfect sense. All the little details you’ve been mulling over, all the worries, the obstacles, the struggles fall away and you get an epiphany moment. I’ve had one of those today, with something I’ve been thinking about to do with Holidays From Home. I won’t bore you with the details; but basically someone pushed me to be clearer about what I was offering and I had my moment of illumination. It was as if the thoughts all came together, almost from a source outside of me.

It was magical and then I was left thinking that it was so obvious, why didn’t I realise it before; but you have to go on the journey, through the challenges to be able to understand it all and come to a conclusion.

I’ve had a couple of these moments and I’m truly grateful for them, because for a little while life feels much less complicated and definitely more hopeful.